Witham, Gary and Galvani, Sarah and Peacock, Marian (2019) End of life care for people who use alcohol and other drugs: findings from a Rapid Evidence Assessment. Health and Social Care in the Community, 5. pp. 637-650. ISSN 0966-0410 Downloaded from: Version: Published Version Publisher: Wiley DOI: https://doi.org/10.1111/hsc.12807 Usage rights: Creative Commons: Attribution 4.0 Please cite the published version
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Witham Gary and Galvani Sarah and Peacock Marian (2019) End of lifecare for people who use alcohol and other drugs findings from a RapidEvidence Assessment Health and Social Care in the Community 5 pp637-650 ISSN 0966-0410
Downloaded from httpse-spacemmuacuk623142
Version Published Version
Publisher Wiley
DOI httpsdoiorg101111hsc12807
Usage rights Creative Commons Attribution 40
Please cite the published version
httpse-spacemmuacuk
Health Soc Care Community 2019001ndash14 emsp|emsp1wileyonlinelibrarycomjournalhsc
AbstractPeoplewhousealcoholandotherdrugs(hereafterldquosubstancesrdquo)andwhoareovertheageof40arenowmore likely todieofanon‐drugrelatedcausethanpeoplewhousesubstancesundertheageof40ThispopulationwillthereforepotentiallyneedgreateraccesstopalliativeandendoflifecareservicesInitiallythepurposeofthisrapidevidenceassessment(REA)conductedAugust2016ndashAugust2017wastoexplorethepeer‐reviewedevidencebaseinrelationtoendoflifecareforpeoplewithproblematicsubstanceuseThefollowingdatabasesweresearchedusingdateparametersof1January2004ndash1August2016AmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocialCareOnlineWebofKnowledgeWebofScienceSSCISamshaNIAAADatawereextractedusingapredefinedprotocolincorporat‐inginclusionandexclusioncriteriaGiventhedearthofevidenceemergingoninter‐ventionsandpracticeresponsestoproblematicsubstanceusetheinclusioncriteriawere broadened to include any peer‐reviewed literature focussing on substanceusespecificallyandendof lifecareTherewere60papers thatmet the inclusioncriteriaThesewerequalityassessedUsingatextualthematicapproachtocatego‐risefindingspapersfellintothreebroadgroups(a)painmanagement(b)homelessandmarginalised groups and (c) alcohol‐related papers In general this small anddiverseliteraturelackeddepthandqualityThepaperssuggesttherearechallengesforhealthandsocialcareprofessionals inmeetingtheendof lifeneedsofpeoplewhouse substancesAddressing issues like safeprescribing forpainmanagementbecomesmorechallenginginthepresenceofsubstanceuseandrequiresflexibleser‐viceprovisionfrombothalcoholdrugservicesandendoflifecareprovidersWorkisneededtodevelopmodelsofgoodpracticeinworkingwithco‐existingsubstanceuseandendoflifeconditionsaswellasprevalencestudiestoprovideawidercontextforpolicydevelopment
In the last 20 years there have been numerous changes evidentamong the populationwho use substances whether this be alco‐hol or other drugs Themost important changes appear to be anincrease in the number of older drugs users a subsequent rise inrates of death from non‐drug related conditions (Beynon 2010)anincreaseinalcohol‐relatedmorbidityamongolderusers(Kaplanetal2012)and theburgeoningofNewPsychoactiveSubstances(NPS) use The increase in older drug users may be associatedwith changes to the treatmentmanagement for illicit opiateusersin the1990rsquos (McKeganey2006) and inparticular theexpansionandgreateravailabilityofmethadoneprescription (Clausen2008ClausenWaalThoresenampGossop2009)Thisincreasedavailabil‐itymeansthatincreasingnumbersofpeoplewithcurrentandprevi‐oussubstanceusehavebettersurvivalratesandaremorelikelytodiefromthesamechronicconditionsthataffectthegeneralpopu‐lation(Corkery2008Beynonetal2010)Itmaybethatsomeofthispopulationareusingsubstancesforlongerorcommencingdruguselaterinlifebutwhateverthecausetherehasbeenanincreasein older drug users accessing drug treatment services in the UK(Beynon2010Beynonetal2010)
Beforemethadonetreatmentprogrammeswereintroducedpeo‐plewhousedsubstanceshadagreaterriskofdyingfromoverdoses(deliberateoraccidental)aswellasaccidentsviolenceanddiseaseThesecouldberelatedtothesubstanceitselforitsrouteofadmin‐istrationsuchasliverdiseaseHIV(HumanImmunodeficiencyVirus)and bacterial infections (Gibson et al 2008)The adoption of evi‐dence‐basedinterventionslikesupervisedinjectingfacilitiesneedleexchangeprogrammesandoutreachprogrammesforillicitdrugusersisconsideredtobeaneffectiveoverarchingpolicyapproachforre‐ducingharm(RitterampCameron2006)Harmreductionpoliciesandrelatedtreatmentapproacheshaveledtooldersubstanceusers(overthe age of 40) nowbeingmore likely to die of a non‐drug relatedcausethanpeopleusingsubstancesundertheageof40(Benyonetal2010Stenbackaetal2008)Howeverpeopleusingsubstancesarestillmorelikelytodieatanearlieragethanthegeneralpopulationandhavepatternsofdiseaseandmorbidity that reflect the impactof substanceuseor the traumatic lifeexperiencesmore frequentlyencountered in this group (BeynonRoeDuffyampPickering 2009Beynonetal2010) Inaddition therearehigher ratesofalcohol‐relatedmorbidity andmortality associatedwith chronic and acutealcohol problems (Chang KreisWong Simpson amp Guymer 2008Shield Parry amp Rehm 2014Taylor et al 2010) This highlights amorenuancedpictureof alcohol‐relatedharmgiven that thehigh‐est consumption is amongmore affluent groups of the population(OfficeforNationalStatistics2017)butthehighestratesofalcohol‐relatedproblemsareamongtheleastaffluent(ErskineMaheswaranPearsonampGleeson2010)
ThefinalsetofchangesistheincreaseintheuseofNPSSomeofthemoreimmediateconsequencesofNPSuseareevidentintheprisons system and in admissions to hospital accident and emer‐gencydepartmentsforacuteintoxication(LiakoniDolderRentsch
ampLiechti 2016RalphsWilliamsAshewampNorton2017) Theseharmfulconsequencesareparticularlyassociatedwithpeoplewhoare homeless (Henshall et al 2018) The impact of NPS use onmortalityandmorbiditybothmediumandlong‐termhasyettobeevaluated
While there has been an improvement in life expectancywithinthegeneralpopulation ithasbeenassociatedwithmoreyearslivingwithpoorhealthordisabilityattheendoflife(BellampMarmot2017)Thishassubsequently increasedtheanticipatednumberofdeathsthatarelikelytoneedpalliativeandendoflifecare (Etkindet al 2017) There appears tobeonly fragmentedevidencerelatingto (a) theextentandnatureof thecareneedsby people using substances and (b) the challenges serviceswillfaceinsupportingpeoplewithproblematicsubstanceuseattheendof lifeThisRapidEvidenceAssessment (REA)aimed toex‐plorewhatisalreadyknownaboutresponsestoendof lifecareneedforpeopleusingsubstanceandidentifygapsintheevidencebaseItformsonepartofawiderprogrammeofresearchonendof lifecare forpeoplewithproblematic substanceuse (GalvaniTetleyetal2016)
11emsp|emspConceptual framework
Within the current literature discrete definitions of palliative asopposed to end of life care are ambiguous and indistinctwith au‐thorsofteninterchangingbetweenthetwotermsForthisREAweexplored the existing theoretical literature and sought advice fromexperts in the fieldWebased thedefinitionofpalliative care on a combination of World Health Organisation (WHO) guidelines andpart of a definition used by the EuropeanAssociation of PalliativeCare(EAPC)
What is known about this topicbull There isan increase inolder substanceuserswhowillrequireendoflifecare
bull Problematic substance users often present with com‐plex social andmedical problems thatmake accessingformalised end of life care services more difficult tonavigatethanotherpopulations
What this paper addsbull This paper identifies and documents the limited evi‐dencebasethatexistsonendoflifecareforpeoplewithsubstanceproblems
bull It identifiesgaps in theevidence relating to focusandmethodology
Palliative care is an approach that improves thequality of life of patients and service users facingthe problems associated with life‐threatening ill‐ness through the prevention and relief of sufferingbymeansofearlyidentificationandassessmentandtreatmentofpainandotherproblemsphysicalpsy‐chosocialandspiritualItalsoprovidescaretofamilymembers friendsandcarersofpatientsandserviceuserstorecognisetheirneedforsupportintheirownrightandaswellastosupportthemtocarefortheirrelativeor lovedonePalliativecareaffirms lifeandregardsdyingasanormalprocessitneitherhastensnorpostponesdeathItsetsouttopreservethebestpossiblequalityoflifeuntildeath
End of life caredefinitionscanhavelimitedclinicalutilitysincerecognisingdyingisdifficulttoassessorpredictwithmanychronicconditionsForthisREAourendof lifedefinitionremainssimilartothepalliativecaredefinitionbutthetimescaleisreducedtothelast12monthsoflife(GeneralMedicalCouncil2010)ForthisREAweexcludedtobaccoandcaffeineDrugsreferstoillicitdrugsandthemisuse of prescriptionmedication Substance usewe initiallydefined as current or previous problematic alcohol or other druguse(prescribedorillicit)whilereceivingpalliativeorendoflifecareHoweverthedearthofliteratureresultedinthedefinitionchangingtoincludeanyalcoholordruguseratherthanproblematicuseex‐ceptweretainedproblematicprescriptiondrugusetoensureman‐ageabilityoftheevidence
2emsp |emspMETHODS
21emsp|emspAims
Thequestiontobeaddressedwaswhatdoestheexistinginterna‐tionalresearchandwiderliteraturetellusaboutcurrentresponsestoendoflifecareforpeoplewithsubstanceproblemsThequestionfocussed initially on care responses andwas broken down furtherintothefollowingaims
1 Toexploreanddocumenttheevidencebasethatalreadyexistson responses to end of life care for people with substanceproblems
ARapidEvidenceAssessment (REA)methodologywas identifiedas themostappropriate research tool touse toenablea speedyidentification of key pieces of evidence This would inform ourwiderstudyandprovideareferencedocumenttounderpinfurtherworkon this topic in policy or practiceREAs canbedefined asproviding
lsquohellipamorestructuredandrigoroussearchandqualityassessmentof theevidencethana literaturereviewrsquobutonecritique is that ithasnarrowerparametersandisnotldquoasexhaustiveasasystematicreviewrdquo (Department for InternationalDevelopment (DFID) 2017online) REAs therefore stem fromSystematic Reviewmethodol‐ogythathistoricallyfocusoninterventionsandtheireffectivenessusingexperimentalorquasi‐experimentalresearchdesignBycon‐trastREAsareusedtogainanoverviewoftheprevalenceandqual‐ity of evidence focusing on topic areas to support commissioningorprogrammingdecisions and identifyingevidencegaps requiringfurtherresearch (DFID2017online)AnREAisconductedwithinashorter timeframethanaSystematicReviewbut retains thekeycharacteristicsofsystematicreviewtransparencyreplicabilityandcomprehensiveness (Government Social Research (GSR) and EPPICentre2009GalvaniampForrester2011GSR2013)
Ourinitialgoalwasestablishingiftherewereanyinterventionsfor this group As the review proceeded the lack of a cohesivebody of evidence to answer the research questions indicated be‐cameclearThereforeacombinationofaREAandsystematicmap‐ping methodology (Clapton Rutter amp Sharif 2009) was adoptedSystematicmapsaimtodescribetheexistingliteratureandgapsinthe literature in a broad topic area and the literature quality andcontentcanbeanalysedindepthormoresuperficiallyasappropri‐ate to individualprojects (Claptonet al 2009p11)The reviewthereforewasconductedwiththerigourofplanningandapproachofanREAHoweverasa resultofourexperienceconducting theREAandthediversityofthe literaturefound italsoencompassedsystematicmappingofthereviewsfindings
23emsp|emspSearch methods
ThisREAwasan iterative review the findingsofwhich sought tosupportthewiderprogrammeofresearchofwhichitwaspartToensureitdidsofiveseparateprotocolsweredevelopedfortheini‐tial searches that spokedirectly to the focusof theother strandsoftheresearchThefirstprotocolexaminedtheprevalence and in‐cidenceofpalliativeendoflifecareandco‐existingsubstanceuseproblematic substance use The second reviewed interventions forpeopleusingalcoholorotherdrugswithco‐existingendoflifecon‐ditions and their families carers friends The third examined thepersonalfamilysocial experienceschallengesandopportunities forpeopleusingalcoholorotherdrugswithco‐existingendoflifecareconditions The fourth and fifth searches focused on bothprofes‐sionalclinicalpractice challengesconcernsforpractitionerssupport‐ing thoseusingalcoholorotherdrugswithco‐existingendof life
careconditionsandgood practice modelsandcarepathwaysinrela‐tiontothispopulation
TheseoriginalprotocolsforthereviewwereadaptedastheREAproceededduetothevery limitedrelevantdatageneratedbythemThisstrategyallowedustorefinethequestionsandthefocusoftheresearch once the reviewwas being conducted Subsequently thesearchtermswerebroadenedtocapturealltheliteraturewithinthisfieldwithinoursearchparameters(seeTable1below)
ThisstrategyisoneofthefeaturesofaniterativeasopposedtoanapriorireviewTwobroadgroupsofevidencewererelevantexistingresearch on palliative and end of life care and existing research onsubstanceuseThesearchprotocolneededtoensurethesebodiesofevidencewereincludedCommontoallfivesearcheswerethedata‐basesAmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocial Care Online Web of Knowledge (including Social ScienceCitationsIndex)WebofScienceSSCISamshaNIAAA
Studiesreviewedwerepublishedinpeer‐reviewedjournalsbe‐tween 1 January 2004 and 1 August 2016 The rationale for thestartingdateparameterof2004wasthepublicationofkeyreportsconcerningendoflifeandpalliativecarethatyear(DepartmentofHealth2004National Institute forClinicalExcellence2004)Anadditional limiterwas that thepaperswerewritten inEnglishWeexcludedtobacco‐relatedstudiesExcludedpaperswerecodedA‐E(seecodingtablebelowinTable2)
24emsp|emspData extraction and synthesis
Given the dearth of intervention studies and the limited literaturefound through the initial searching a systematicmapping approachwasadoptedThisfacilitatesavisualmapoftheexistingliteratureonthebroadtopicofsubstanceuseandendoflifecareItalsoallowedcategorisationof theexistingevidence inanumberofways includ‐ing its methodology focus and country of origin Textual narrativesynthesis (Barnett‐Page ampThomas 2009)was used to explore anysimilaritiesdifferencesandrelationshipsbetweenpapersThetextualnarrativeapproachinvolvesacommentarydescribingstudycharacter‐isticscontextqualityandfindingsThiswasfacilitatedbyathree‐stepprocess(LucasBairdAraiLawampRoberts2007)including(a)studygroupinginwhichstudiesbelongingtoeachofthesub‐groupsforex‐amplepainmanagementoralcoholwereidentifiedwithtworesearch‐ers independently categorising and theming the papers (b)Themesproducedbyeachresearcherwerecomparedandaconsolidatedlist
produced(c)sub‐groupsynthesiswerethendevelopedIftherewereanydisagreementa third researcherwould reviewthepaperStudycommentarieswereproducedinanexcelfiletosummarisekeyaspectsofthepapersinrelationtothesub‐groupwithinwhichtheywerein‐cludedThisincludedbothkeyfindingsandorrecommendationsthatspeaktotheaimsofthisREAIntermsofqualitycontroleachcom‐mentarywasreviewedbyasecondresearcherindependentlytoassessthesummaryinrelationtotheoriginalpaper
25emsp|emspQuality appraisal
The quality of the individual studieswas assessed based on sixprinciplesderivedfromDFIDguidanceeachofwhichhaveanum‐berofqualityrelatedquestionswithintheprinciples(DFID2014)Thekeyprinciples are (a)Conceptual framing (b)Transparency(c) Appropriateness (d) Cultural sensitivity (e) Validity and (f)Cogency
Therewere60papersgeneratedfromoursearchafterapplyingtheinclusionandexclusioncriteriaTheywerehoweverextremelydiverse inmethodology focus and audience The systematicmap(Figure 2) illustrates the range of evidence found among the 60papers
C Isnotrelatedtopalliativeorendoflifecareorsubstanceuse
D Notaboutpracticeorpathwaysprofessionalpracticeconcernsfamilyandsocialnetworks
E Doesnotmeettheabovebutisofinterestandrelevance(setaside)
emspensp emsp | emsp5WITHAM eT Al
31emsp|emspThematic groups
Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology
32emsp|emspPain management
Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015
Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)
In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician
F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits
n = 4384
First screening of tles Total removed
n = 4232
Second screening of abstracts
Total removedn = 82
Not about sub use n = 25Not about EOL care n = 36
Neither about sub use or EOL n = 21
Full text readingTotal removed
n = 10
Not about sub use n = 6Not about EOL care n = 2
Neither about sub use or EOL n = 2
Final sample for inclusionn = 60
Not about sub use or EOL n = 4232
6emsp |emsp emspensp WITHAM eT Al
33emsp|emspHomeless and marginalised groups
Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)
34emsp|emspHomeless populations
The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006
Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)
F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare
Case study (n =10) 357Description of practice (n =8) 285
Literature review (n = 5) 178Systematic review (n=3) 107
Book chapter (n=2) 71
emspensp emsp | emsp7WITHAM eT Al
MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons
35emsp|emspMental Health HIV and miscellaneous groups
MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof
mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication
36emsp|emspAlcohol
Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)
Study quality Symbol Type of study Number of all studies
High(14ndash18) uarr Primary Secondary
9 281
Moderate(10ndash13) rarr Primary Secondary
18 562
Low(6ndash9) darr Primary Secondary
5 156
Total 32 100
TA B L E 3 emspQualityratingsofempiricalliterature
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
Health Soc Care Community 2019001ndash14 emsp|emsp1wileyonlinelibrarycomjournalhsc
AbstractPeoplewhousealcoholandotherdrugs(hereafterldquosubstancesrdquo)andwhoareovertheageof40arenowmore likely todieofanon‐drugrelatedcausethanpeoplewhousesubstancesundertheageof40ThispopulationwillthereforepotentiallyneedgreateraccesstopalliativeandendoflifecareservicesInitiallythepurposeofthisrapidevidenceassessment(REA)conductedAugust2016ndashAugust2017wastoexplorethepeer‐reviewedevidencebaseinrelationtoendoflifecareforpeoplewithproblematicsubstanceuseThefollowingdatabasesweresearchedusingdateparametersof1January2004ndash1August2016AmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocialCareOnlineWebofKnowledgeWebofScienceSSCISamshaNIAAADatawereextractedusingapredefinedprotocolincorporat‐inginclusionandexclusioncriteriaGiventhedearthofevidenceemergingoninter‐ventionsandpracticeresponsestoproblematicsubstanceusetheinclusioncriteriawere broadened to include any peer‐reviewed literature focussing on substanceusespecificallyandendof lifecareTherewere60papers thatmet the inclusioncriteriaThesewerequalityassessedUsingatextualthematicapproachtocatego‐risefindingspapersfellintothreebroadgroups(a)painmanagement(b)homelessandmarginalised groups and (c) alcohol‐related papers In general this small anddiverseliteraturelackeddepthandqualityThepaperssuggesttherearechallengesforhealthandsocialcareprofessionals inmeetingtheendof lifeneedsofpeoplewhouse substancesAddressing issues like safeprescribing forpainmanagementbecomesmorechallenginginthepresenceofsubstanceuseandrequiresflexibleser‐viceprovisionfrombothalcoholdrugservicesandendoflifecareprovidersWorkisneededtodevelopmodelsofgoodpracticeinworkingwithco‐existingsubstanceuseandendoflifeconditionsaswellasprevalencestudiestoprovideawidercontextforpolicydevelopment
In the last 20 years there have been numerous changes evidentamong the populationwho use substances whether this be alco‐hol or other drugs Themost important changes appear to be anincrease in the number of older drugs users a subsequent rise inrates of death from non‐drug related conditions (Beynon 2010)anincreaseinalcohol‐relatedmorbidityamongolderusers(Kaplanetal2012)and theburgeoningofNewPsychoactiveSubstances(NPS) use The increase in older drug users may be associatedwith changes to the treatmentmanagement for illicit opiateusersin the1990rsquos (McKeganey2006) and inparticular theexpansionandgreateravailabilityofmethadoneprescription (Clausen2008ClausenWaalThoresenampGossop2009)Thisincreasedavailabil‐itymeansthatincreasingnumbersofpeoplewithcurrentandprevi‐oussubstanceusehavebettersurvivalratesandaremorelikelytodiefromthesamechronicconditionsthataffectthegeneralpopu‐lation(Corkery2008Beynonetal2010)Itmaybethatsomeofthispopulationareusingsubstancesforlongerorcommencingdruguselaterinlifebutwhateverthecausetherehasbeenanincreasein older drug users accessing drug treatment services in the UK(Beynon2010Beynonetal2010)
Beforemethadonetreatmentprogrammeswereintroducedpeo‐plewhousedsubstanceshadagreaterriskofdyingfromoverdoses(deliberateoraccidental)aswellasaccidentsviolenceanddiseaseThesecouldberelatedtothesubstanceitselforitsrouteofadmin‐istrationsuchasliverdiseaseHIV(HumanImmunodeficiencyVirus)and bacterial infections (Gibson et al 2008)The adoption of evi‐dence‐basedinterventionslikesupervisedinjectingfacilitiesneedleexchangeprogrammesandoutreachprogrammesforillicitdrugusersisconsideredtobeaneffectiveoverarchingpolicyapproachforre‐ducingharm(RitterampCameron2006)Harmreductionpoliciesandrelatedtreatmentapproacheshaveledtooldersubstanceusers(overthe age of 40) nowbeingmore likely to die of a non‐drug relatedcausethanpeopleusingsubstancesundertheageof40(Benyonetal2010Stenbackaetal2008)Howeverpeopleusingsubstancesarestillmorelikelytodieatanearlieragethanthegeneralpopulationandhavepatternsofdiseaseandmorbidity that reflect the impactof substanceuseor the traumatic lifeexperiencesmore frequentlyencountered in this group (BeynonRoeDuffyampPickering 2009Beynonetal2010) Inaddition therearehigher ratesofalcohol‐relatedmorbidity andmortality associatedwith chronic and acutealcohol problems (Chang KreisWong Simpson amp Guymer 2008Shield Parry amp Rehm 2014Taylor et al 2010) This highlights amorenuancedpictureof alcohol‐relatedharmgiven that thehigh‐est consumption is amongmore affluent groups of the population(OfficeforNationalStatistics2017)butthehighestratesofalcohol‐relatedproblemsareamongtheleastaffluent(ErskineMaheswaranPearsonampGleeson2010)
ThefinalsetofchangesistheincreaseintheuseofNPSSomeofthemoreimmediateconsequencesofNPSuseareevidentintheprisons system and in admissions to hospital accident and emer‐gencydepartmentsforacuteintoxication(LiakoniDolderRentsch
ampLiechti 2016RalphsWilliamsAshewampNorton2017) Theseharmfulconsequencesareparticularlyassociatedwithpeoplewhoare homeless (Henshall et al 2018) The impact of NPS use onmortalityandmorbiditybothmediumandlong‐termhasyettobeevaluated
While there has been an improvement in life expectancywithinthegeneralpopulation ithasbeenassociatedwithmoreyearslivingwithpoorhealthordisabilityattheendoflife(BellampMarmot2017)Thishassubsequently increasedtheanticipatednumberofdeathsthatarelikelytoneedpalliativeandendoflifecare (Etkindet al 2017) There appears tobeonly fragmentedevidencerelatingto (a) theextentandnatureof thecareneedsby people using substances and (b) the challenges serviceswillfaceinsupportingpeoplewithproblematicsubstanceuseattheendof lifeThisRapidEvidenceAssessment (REA)aimed toex‐plorewhatisalreadyknownaboutresponsestoendof lifecareneedforpeopleusingsubstanceandidentifygapsintheevidencebaseItformsonepartofawiderprogrammeofresearchonendof lifecare forpeoplewithproblematic substanceuse (GalvaniTetleyetal2016)
11emsp|emspConceptual framework
Within the current literature discrete definitions of palliative asopposed to end of life care are ambiguous and indistinctwith au‐thorsofteninterchangingbetweenthetwotermsForthisREAweexplored the existing theoretical literature and sought advice fromexperts in the fieldWebased thedefinitionofpalliative care on a combination of World Health Organisation (WHO) guidelines andpart of a definition used by the EuropeanAssociation of PalliativeCare(EAPC)
What is known about this topicbull There isan increase inolder substanceuserswhowillrequireendoflifecare
bull Problematic substance users often present with com‐plex social andmedical problems thatmake accessingformalised end of life care services more difficult tonavigatethanotherpopulations
What this paper addsbull This paper identifies and documents the limited evi‐dencebasethatexistsonendoflifecareforpeoplewithsubstanceproblems
bull It identifiesgaps in theevidence relating to focusandmethodology
Palliative care is an approach that improves thequality of life of patients and service users facingthe problems associated with life‐threatening ill‐ness through the prevention and relief of sufferingbymeansofearlyidentificationandassessmentandtreatmentofpainandotherproblemsphysicalpsy‐chosocialandspiritualItalsoprovidescaretofamilymembers friendsandcarersofpatientsandserviceuserstorecognisetheirneedforsupportintheirownrightandaswellastosupportthemtocarefortheirrelativeor lovedonePalliativecareaffirms lifeandregardsdyingasanormalprocessitneitherhastensnorpostponesdeathItsetsouttopreservethebestpossiblequalityoflifeuntildeath
End of life caredefinitionscanhavelimitedclinicalutilitysincerecognisingdyingisdifficulttoassessorpredictwithmanychronicconditionsForthisREAourendof lifedefinitionremainssimilartothepalliativecaredefinitionbutthetimescaleisreducedtothelast12monthsoflife(GeneralMedicalCouncil2010)ForthisREAweexcludedtobaccoandcaffeineDrugsreferstoillicitdrugsandthemisuse of prescriptionmedication Substance usewe initiallydefined as current or previous problematic alcohol or other druguse(prescribedorillicit)whilereceivingpalliativeorendoflifecareHoweverthedearthofliteratureresultedinthedefinitionchangingtoincludeanyalcoholordruguseratherthanproblematicuseex‐ceptweretainedproblematicprescriptiondrugusetoensureman‐ageabilityoftheevidence
2emsp |emspMETHODS
21emsp|emspAims
Thequestiontobeaddressedwaswhatdoestheexistinginterna‐tionalresearchandwiderliteraturetellusaboutcurrentresponsestoendoflifecareforpeoplewithsubstanceproblemsThequestionfocussed initially on care responses andwas broken down furtherintothefollowingaims
1 Toexploreanddocumenttheevidencebasethatalreadyexistson responses to end of life care for people with substanceproblems
ARapidEvidenceAssessment (REA)methodologywas identifiedas themostappropriate research tool touse toenablea speedyidentification of key pieces of evidence This would inform ourwiderstudyandprovideareferencedocumenttounderpinfurtherworkon this topic in policy or practiceREAs canbedefined asproviding
lsquohellipamorestructuredandrigoroussearchandqualityassessmentof theevidencethana literaturereviewrsquobutonecritique is that ithasnarrowerparametersandisnotldquoasexhaustiveasasystematicreviewrdquo (Department for InternationalDevelopment (DFID) 2017online) REAs therefore stem fromSystematic Reviewmethodol‐ogythathistoricallyfocusoninterventionsandtheireffectivenessusingexperimentalorquasi‐experimentalresearchdesignBycon‐trastREAsareusedtogainanoverviewoftheprevalenceandqual‐ity of evidence focusing on topic areas to support commissioningorprogrammingdecisions and identifyingevidencegaps requiringfurtherresearch (DFID2017online)AnREAisconductedwithinashorter timeframethanaSystematicReviewbut retains thekeycharacteristicsofsystematicreviewtransparencyreplicabilityandcomprehensiveness (Government Social Research (GSR) and EPPICentre2009GalvaniampForrester2011GSR2013)
Ourinitialgoalwasestablishingiftherewereanyinterventionsfor this group As the review proceeded the lack of a cohesivebody of evidence to answer the research questions indicated be‐cameclearThereforeacombinationofaREAandsystematicmap‐ping methodology (Clapton Rutter amp Sharif 2009) was adoptedSystematicmapsaimtodescribetheexistingliteratureandgapsinthe literature in a broad topic area and the literature quality andcontentcanbeanalysedindepthormoresuperficiallyasappropri‐ate to individualprojects (Claptonet al 2009p11)The reviewthereforewasconductedwiththerigourofplanningandapproachofanREAHoweverasa resultofourexperienceconducting theREAandthediversityofthe literaturefound italsoencompassedsystematicmappingofthereviewsfindings
23emsp|emspSearch methods
ThisREAwasan iterative review the findingsofwhich sought tosupportthewiderprogrammeofresearchofwhichitwaspartToensureitdidsofiveseparateprotocolsweredevelopedfortheini‐tial searches that spokedirectly to the focusof theother strandsoftheresearchThefirstprotocolexaminedtheprevalence and in‐cidenceofpalliativeendoflifecareandco‐existingsubstanceuseproblematic substance use The second reviewed interventions forpeopleusingalcoholorotherdrugswithco‐existingendoflifecon‐ditions and their families carers friends The third examined thepersonalfamilysocial experienceschallengesandopportunities forpeopleusingalcoholorotherdrugswithco‐existingendoflifecareconditions The fourth and fifth searches focused on bothprofes‐sionalclinicalpractice challengesconcernsforpractitionerssupport‐ing thoseusingalcoholorotherdrugswithco‐existingendof life
careconditionsandgood practice modelsandcarepathwaysinrela‐tiontothispopulation
TheseoriginalprotocolsforthereviewwereadaptedastheREAproceededduetothevery limitedrelevantdatageneratedbythemThisstrategyallowedustorefinethequestionsandthefocusoftheresearch once the reviewwas being conducted Subsequently thesearchtermswerebroadenedtocapturealltheliteraturewithinthisfieldwithinoursearchparameters(seeTable1below)
ThisstrategyisoneofthefeaturesofaniterativeasopposedtoanapriorireviewTwobroadgroupsofevidencewererelevantexistingresearch on palliative and end of life care and existing research onsubstanceuseThesearchprotocolneededtoensurethesebodiesofevidencewereincludedCommontoallfivesearcheswerethedata‐basesAmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocial Care Online Web of Knowledge (including Social ScienceCitationsIndex)WebofScienceSSCISamshaNIAAA
Studiesreviewedwerepublishedinpeer‐reviewedjournalsbe‐tween 1 January 2004 and 1 August 2016 The rationale for thestartingdateparameterof2004wasthepublicationofkeyreportsconcerningendoflifeandpalliativecarethatyear(DepartmentofHealth2004National Institute forClinicalExcellence2004)Anadditional limiterwas that thepaperswerewritten inEnglishWeexcludedtobacco‐relatedstudiesExcludedpaperswerecodedA‐E(seecodingtablebelowinTable2)
24emsp|emspData extraction and synthesis
Given the dearth of intervention studies and the limited literaturefound through the initial searching a systematicmapping approachwasadoptedThisfacilitatesavisualmapoftheexistingliteratureonthebroadtopicofsubstanceuseandendoflifecareItalsoallowedcategorisationof theexistingevidence inanumberofways includ‐ing its methodology focus and country of origin Textual narrativesynthesis (Barnett‐Page ampThomas 2009)was used to explore anysimilaritiesdifferencesandrelationshipsbetweenpapersThetextualnarrativeapproachinvolvesacommentarydescribingstudycharacter‐isticscontextqualityandfindingsThiswasfacilitatedbyathree‐stepprocess(LucasBairdAraiLawampRoberts2007)including(a)studygroupinginwhichstudiesbelongingtoeachofthesub‐groupsforex‐amplepainmanagementoralcoholwereidentifiedwithtworesearch‐ers independently categorising and theming the papers (b)Themesproducedbyeachresearcherwerecomparedandaconsolidatedlist
produced(c)sub‐groupsynthesiswerethendevelopedIftherewereanydisagreementa third researcherwould reviewthepaperStudycommentarieswereproducedinanexcelfiletosummarisekeyaspectsofthepapersinrelationtothesub‐groupwithinwhichtheywerein‐cludedThisincludedbothkeyfindingsandorrecommendationsthatspeaktotheaimsofthisREAIntermsofqualitycontroleachcom‐mentarywasreviewedbyasecondresearcherindependentlytoassessthesummaryinrelationtotheoriginalpaper
25emsp|emspQuality appraisal
The quality of the individual studieswas assessed based on sixprinciplesderivedfromDFIDguidanceeachofwhichhaveanum‐berofqualityrelatedquestionswithintheprinciples(DFID2014)Thekeyprinciples are (a)Conceptual framing (b)Transparency(c) Appropriateness (d) Cultural sensitivity (e) Validity and (f)Cogency
Therewere60papersgeneratedfromoursearchafterapplyingtheinclusionandexclusioncriteriaTheywerehoweverextremelydiverse inmethodology focus and audience The systematicmap(Figure 2) illustrates the range of evidence found among the 60papers
C Isnotrelatedtopalliativeorendoflifecareorsubstanceuse
D Notaboutpracticeorpathwaysprofessionalpracticeconcernsfamilyandsocialnetworks
E Doesnotmeettheabovebutisofinterestandrelevance(setaside)
emspensp emsp | emsp5WITHAM eT Al
31emsp|emspThematic groups
Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology
32emsp|emspPain management
Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015
Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)
In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician
F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits
n = 4384
First screening of tles Total removed
n = 4232
Second screening of abstracts
Total removedn = 82
Not about sub use n = 25Not about EOL care n = 36
Neither about sub use or EOL n = 21
Full text readingTotal removed
n = 10
Not about sub use n = 6Not about EOL care n = 2
Neither about sub use or EOL n = 2
Final sample for inclusionn = 60
Not about sub use or EOL n = 4232
6emsp |emsp emspensp WITHAM eT Al
33emsp|emspHomeless and marginalised groups
Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)
34emsp|emspHomeless populations
The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006
Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)
F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare
Case study (n =10) 357Description of practice (n =8) 285
Literature review (n = 5) 178Systematic review (n=3) 107
Book chapter (n=2) 71
emspensp emsp | emsp7WITHAM eT Al
MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons
35emsp|emspMental Health HIV and miscellaneous groups
MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof
mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication
36emsp|emspAlcohol
Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)
Study quality Symbol Type of study Number of all studies
High(14ndash18) uarr Primary Secondary
9 281
Moderate(10ndash13) rarr Primary Secondary
18 562
Low(6ndash9) darr Primary Secondary
5 156
Total 32 100
TA B L E 3 emspQualityratingsofempiricalliterature
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
2emsp |emsp emspensp WITHAM eT Al
1emsp |emspBACKGROUND
In the last 20 years there have been numerous changes evidentamong the populationwho use substances whether this be alco‐hol or other drugs Themost important changes appear to be anincrease in the number of older drugs users a subsequent rise inrates of death from non‐drug related conditions (Beynon 2010)anincreaseinalcohol‐relatedmorbidityamongolderusers(Kaplanetal2012)and theburgeoningofNewPsychoactiveSubstances(NPS) use The increase in older drug users may be associatedwith changes to the treatmentmanagement for illicit opiateusersin the1990rsquos (McKeganey2006) and inparticular theexpansionandgreateravailabilityofmethadoneprescription (Clausen2008ClausenWaalThoresenampGossop2009)Thisincreasedavailabil‐itymeansthatincreasingnumbersofpeoplewithcurrentandprevi‐oussubstanceusehavebettersurvivalratesandaremorelikelytodiefromthesamechronicconditionsthataffectthegeneralpopu‐lation(Corkery2008Beynonetal2010)Itmaybethatsomeofthispopulationareusingsubstancesforlongerorcommencingdruguselaterinlifebutwhateverthecausetherehasbeenanincreasein older drug users accessing drug treatment services in the UK(Beynon2010Beynonetal2010)
Beforemethadonetreatmentprogrammeswereintroducedpeo‐plewhousedsubstanceshadagreaterriskofdyingfromoverdoses(deliberateoraccidental)aswellasaccidentsviolenceanddiseaseThesecouldberelatedtothesubstanceitselforitsrouteofadmin‐istrationsuchasliverdiseaseHIV(HumanImmunodeficiencyVirus)and bacterial infections (Gibson et al 2008)The adoption of evi‐dence‐basedinterventionslikesupervisedinjectingfacilitiesneedleexchangeprogrammesandoutreachprogrammesforillicitdrugusersisconsideredtobeaneffectiveoverarchingpolicyapproachforre‐ducingharm(RitterampCameron2006)Harmreductionpoliciesandrelatedtreatmentapproacheshaveledtooldersubstanceusers(overthe age of 40) nowbeingmore likely to die of a non‐drug relatedcausethanpeopleusingsubstancesundertheageof40(Benyonetal2010Stenbackaetal2008)Howeverpeopleusingsubstancesarestillmorelikelytodieatanearlieragethanthegeneralpopulationandhavepatternsofdiseaseandmorbidity that reflect the impactof substanceuseor the traumatic lifeexperiencesmore frequentlyencountered in this group (BeynonRoeDuffyampPickering 2009Beynonetal2010) Inaddition therearehigher ratesofalcohol‐relatedmorbidity andmortality associatedwith chronic and acutealcohol problems (Chang KreisWong Simpson amp Guymer 2008Shield Parry amp Rehm 2014Taylor et al 2010) This highlights amorenuancedpictureof alcohol‐relatedharmgiven that thehigh‐est consumption is amongmore affluent groups of the population(OfficeforNationalStatistics2017)butthehighestratesofalcohol‐relatedproblemsareamongtheleastaffluent(ErskineMaheswaranPearsonampGleeson2010)
ThefinalsetofchangesistheincreaseintheuseofNPSSomeofthemoreimmediateconsequencesofNPSuseareevidentintheprisons system and in admissions to hospital accident and emer‐gencydepartmentsforacuteintoxication(LiakoniDolderRentsch
ampLiechti 2016RalphsWilliamsAshewampNorton2017) Theseharmfulconsequencesareparticularlyassociatedwithpeoplewhoare homeless (Henshall et al 2018) The impact of NPS use onmortalityandmorbiditybothmediumandlong‐termhasyettobeevaluated
While there has been an improvement in life expectancywithinthegeneralpopulation ithasbeenassociatedwithmoreyearslivingwithpoorhealthordisabilityattheendoflife(BellampMarmot2017)Thishassubsequently increasedtheanticipatednumberofdeathsthatarelikelytoneedpalliativeandendoflifecare (Etkindet al 2017) There appears tobeonly fragmentedevidencerelatingto (a) theextentandnatureof thecareneedsby people using substances and (b) the challenges serviceswillfaceinsupportingpeoplewithproblematicsubstanceuseattheendof lifeThisRapidEvidenceAssessment (REA)aimed toex‐plorewhatisalreadyknownaboutresponsestoendof lifecareneedforpeopleusingsubstanceandidentifygapsintheevidencebaseItformsonepartofawiderprogrammeofresearchonendof lifecare forpeoplewithproblematic substanceuse (GalvaniTetleyetal2016)
11emsp|emspConceptual framework
Within the current literature discrete definitions of palliative asopposed to end of life care are ambiguous and indistinctwith au‐thorsofteninterchangingbetweenthetwotermsForthisREAweexplored the existing theoretical literature and sought advice fromexperts in the fieldWebased thedefinitionofpalliative care on a combination of World Health Organisation (WHO) guidelines andpart of a definition used by the EuropeanAssociation of PalliativeCare(EAPC)
What is known about this topicbull There isan increase inolder substanceuserswhowillrequireendoflifecare
bull Problematic substance users often present with com‐plex social andmedical problems thatmake accessingformalised end of life care services more difficult tonavigatethanotherpopulations
What this paper addsbull This paper identifies and documents the limited evi‐dencebasethatexistsonendoflifecareforpeoplewithsubstanceproblems
bull It identifiesgaps in theevidence relating to focusandmethodology
Palliative care is an approach that improves thequality of life of patients and service users facingthe problems associated with life‐threatening ill‐ness through the prevention and relief of sufferingbymeansofearlyidentificationandassessmentandtreatmentofpainandotherproblemsphysicalpsy‐chosocialandspiritualItalsoprovidescaretofamilymembers friendsandcarersofpatientsandserviceuserstorecognisetheirneedforsupportintheirownrightandaswellastosupportthemtocarefortheirrelativeor lovedonePalliativecareaffirms lifeandregardsdyingasanormalprocessitneitherhastensnorpostponesdeathItsetsouttopreservethebestpossiblequalityoflifeuntildeath
End of life caredefinitionscanhavelimitedclinicalutilitysincerecognisingdyingisdifficulttoassessorpredictwithmanychronicconditionsForthisREAourendof lifedefinitionremainssimilartothepalliativecaredefinitionbutthetimescaleisreducedtothelast12monthsoflife(GeneralMedicalCouncil2010)ForthisREAweexcludedtobaccoandcaffeineDrugsreferstoillicitdrugsandthemisuse of prescriptionmedication Substance usewe initiallydefined as current or previous problematic alcohol or other druguse(prescribedorillicit)whilereceivingpalliativeorendoflifecareHoweverthedearthofliteratureresultedinthedefinitionchangingtoincludeanyalcoholordruguseratherthanproblematicuseex‐ceptweretainedproblematicprescriptiondrugusetoensureman‐ageabilityoftheevidence
2emsp |emspMETHODS
21emsp|emspAims
Thequestiontobeaddressedwaswhatdoestheexistinginterna‐tionalresearchandwiderliteraturetellusaboutcurrentresponsestoendoflifecareforpeoplewithsubstanceproblemsThequestionfocussed initially on care responses andwas broken down furtherintothefollowingaims
1 Toexploreanddocumenttheevidencebasethatalreadyexistson responses to end of life care for people with substanceproblems
ARapidEvidenceAssessment (REA)methodologywas identifiedas themostappropriate research tool touse toenablea speedyidentification of key pieces of evidence This would inform ourwiderstudyandprovideareferencedocumenttounderpinfurtherworkon this topic in policy or practiceREAs canbedefined asproviding
lsquohellipamorestructuredandrigoroussearchandqualityassessmentof theevidencethana literaturereviewrsquobutonecritique is that ithasnarrowerparametersandisnotldquoasexhaustiveasasystematicreviewrdquo (Department for InternationalDevelopment (DFID) 2017online) REAs therefore stem fromSystematic Reviewmethodol‐ogythathistoricallyfocusoninterventionsandtheireffectivenessusingexperimentalorquasi‐experimentalresearchdesignBycon‐trastREAsareusedtogainanoverviewoftheprevalenceandqual‐ity of evidence focusing on topic areas to support commissioningorprogrammingdecisions and identifyingevidencegaps requiringfurtherresearch (DFID2017online)AnREAisconductedwithinashorter timeframethanaSystematicReviewbut retains thekeycharacteristicsofsystematicreviewtransparencyreplicabilityandcomprehensiveness (Government Social Research (GSR) and EPPICentre2009GalvaniampForrester2011GSR2013)
Ourinitialgoalwasestablishingiftherewereanyinterventionsfor this group As the review proceeded the lack of a cohesivebody of evidence to answer the research questions indicated be‐cameclearThereforeacombinationofaREAandsystematicmap‐ping methodology (Clapton Rutter amp Sharif 2009) was adoptedSystematicmapsaimtodescribetheexistingliteratureandgapsinthe literature in a broad topic area and the literature quality andcontentcanbeanalysedindepthormoresuperficiallyasappropri‐ate to individualprojects (Claptonet al 2009p11)The reviewthereforewasconductedwiththerigourofplanningandapproachofanREAHoweverasa resultofourexperienceconducting theREAandthediversityofthe literaturefound italsoencompassedsystematicmappingofthereviewsfindings
23emsp|emspSearch methods
ThisREAwasan iterative review the findingsofwhich sought tosupportthewiderprogrammeofresearchofwhichitwaspartToensureitdidsofiveseparateprotocolsweredevelopedfortheini‐tial searches that spokedirectly to the focusof theother strandsoftheresearchThefirstprotocolexaminedtheprevalence and in‐cidenceofpalliativeendoflifecareandco‐existingsubstanceuseproblematic substance use The second reviewed interventions forpeopleusingalcoholorotherdrugswithco‐existingendoflifecon‐ditions and their families carers friends The third examined thepersonalfamilysocial experienceschallengesandopportunities forpeopleusingalcoholorotherdrugswithco‐existingendoflifecareconditions The fourth and fifth searches focused on bothprofes‐sionalclinicalpractice challengesconcernsforpractitionerssupport‐ing thoseusingalcoholorotherdrugswithco‐existingendof life
careconditionsandgood practice modelsandcarepathwaysinrela‐tiontothispopulation
TheseoriginalprotocolsforthereviewwereadaptedastheREAproceededduetothevery limitedrelevantdatageneratedbythemThisstrategyallowedustorefinethequestionsandthefocusoftheresearch once the reviewwas being conducted Subsequently thesearchtermswerebroadenedtocapturealltheliteraturewithinthisfieldwithinoursearchparameters(seeTable1below)
ThisstrategyisoneofthefeaturesofaniterativeasopposedtoanapriorireviewTwobroadgroupsofevidencewererelevantexistingresearch on palliative and end of life care and existing research onsubstanceuseThesearchprotocolneededtoensurethesebodiesofevidencewereincludedCommontoallfivesearcheswerethedata‐basesAmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocial Care Online Web of Knowledge (including Social ScienceCitationsIndex)WebofScienceSSCISamshaNIAAA
Studiesreviewedwerepublishedinpeer‐reviewedjournalsbe‐tween 1 January 2004 and 1 August 2016 The rationale for thestartingdateparameterof2004wasthepublicationofkeyreportsconcerningendoflifeandpalliativecarethatyear(DepartmentofHealth2004National Institute forClinicalExcellence2004)Anadditional limiterwas that thepaperswerewritten inEnglishWeexcludedtobacco‐relatedstudiesExcludedpaperswerecodedA‐E(seecodingtablebelowinTable2)
24emsp|emspData extraction and synthesis
Given the dearth of intervention studies and the limited literaturefound through the initial searching a systematicmapping approachwasadoptedThisfacilitatesavisualmapoftheexistingliteratureonthebroadtopicofsubstanceuseandendoflifecareItalsoallowedcategorisationof theexistingevidence inanumberofways includ‐ing its methodology focus and country of origin Textual narrativesynthesis (Barnett‐Page ampThomas 2009)was used to explore anysimilaritiesdifferencesandrelationshipsbetweenpapersThetextualnarrativeapproachinvolvesacommentarydescribingstudycharacter‐isticscontextqualityandfindingsThiswasfacilitatedbyathree‐stepprocess(LucasBairdAraiLawampRoberts2007)including(a)studygroupinginwhichstudiesbelongingtoeachofthesub‐groupsforex‐amplepainmanagementoralcoholwereidentifiedwithtworesearch‐ers independently categorising and theming the papers (b)Themesproducedbyeachresearcherwerecomparedandaconsolidatedlist
produced(c)sub‐groupsynthesiswerethendevelopedIftherewereanydisagreementa third researcherwould reviewthepaperStudycommentarieswereproducedinanexcelfiletosummarisekeyaspectsofthepapersinrelationtothesub‐groupwithinwhichtheywerein‐cludedThisincludedbothkeyfindingsandorrecommendationsthatspeaktotheaimsofthisREAIntermsofqualitycontroleachcom‐mentarywasreviewedbyasecondresearcherindependentlytoassessthesummaryinrelationtotheoriginalpaper
25emsp|emspQuality appraisal
The quality of the individual studieswas assessed based on sixprinciplesderivedfromDFIDguidanceeachofwhichhaveanum‐berofqualityrelatedquestionswithintheprinciples(DFID2014)Thekeyprinciples are (a)Conceptual framing (b)Transparency(c) Appropriateness (d) Cultural sensitivity (e) Validity and (f)Cogency
Therewere60papersgeneratedfromoursearchafterapplyingtheinclusionandexclusioncriteriaTheywerehoweverextremelydiverse inmethodology focus and audience The systematicmap(Figure 2) illustrates the range of evidence found among the 60papers
C Isnotrelatedtopalliativeorendoflifecareorsubstanceuse
D Notaboutpracticeorpathwaysprofessionalpracticeconcernsfamilyandsocialnetworks
E Doesnotmeettheabovebutisofinterestandrelevance(setaside)
emspensp emsp | emsp5WITHAM eT Al
31emsp|emspThematic groups
Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology
32emsp|emspPain management
Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015
Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)
In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician
F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits
n = 4384
First screening of tles Total removed
n = 4232
Second screening of abstracts
Total removedn = 82
Not about sub use n = 25Not about EOL care n = 36
Neither about sub use or EOL n = 21
Full text readingTotal removed
n = 10
Not about sub use n = 6Not about EOL care n = 2
Neither about sub use or EOL n = 2
Final sample for inclusionn = 60
Not about sub use or EOL n = 4232
6emsp |emsp emspensp WITHAM eT Al
33emsp|emspHomeless and marginalised groups
Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)
34emsp|emspHomeless populations
The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006
Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)
F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare
Case study (n =10) 357Description of practice (n =8) 285
Literature review (n = 5) 178Systematic review (n=3) 107
Book chapter (n=2) 71
emspensp emsp | emsp7WITHAM eT Al
MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons
35emsp|emspMental Health HIV and miscellaneous groups
MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof
mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication
36emsp|emspAlcohol
Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)
Study quality Symbol Type of study Number of all studies
High(14ndash18) uarr Primary Secondary
9 281
Moderate(10ndash13) rarr Primary Secondary
18 562
Low(6ndash9) darr Primary Secondary
5 156
Total 32 100
TA B L E 3 emspQualityratingsofempiricalliterature
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
emspensp emsp | emsp3WITHAM eT Al
Palliative care is an approach that improves thequality of life of patients and service users facingthe problems associated with life‐threatening ill‐ness through the prevention and relief of sufferingbymeansofearlyidentificationandassessmentandtreatmentofpainandotherproblemsphysicalpsy‐chosocialandspiritualItalsoprovidescaretofamilymembers friendsandcarersofpatientsandserviceuserstorecognisetheirneedforsupportintheirownrightandaswellastosupportthemtocarefortheirrelativeor lovedonePalliativecareaffirms lifeandregardsdyingasanormalprocessitneitherhastensnorpostponesdeathItsetsouttopreservethebestpossiblequalityoflifeuntildeath
End of life caredefinitionscanhavelimitedclinicalutilitysincerecognisingdyingisdifficulttoassessorpredictwithmanychronicconditionsForthisREAourendof lifedefinitionremainssimilartothepalliativecaredefinitionbutthetimescaleisreducedtothelast12monthsoflife(GeneralMedicalCouncil2010)ForthisREAweexcludedtobaccoandcaffeineDrugsreferstoillicitdrugsandthemisuse of prescriptionmedication Substance usewe initiallydefined as current or previous problematic alcohol or other druguse(prescribedorillicit)whilereceivingpalliativeorendoflifecareHoweverthedearthofliteratureresultedinthedefinitionchangingtoincludeanyalcoholordruguseratherthanproblematicuseex‐ceptweretainedproblematicprescriptiondrugusetoensureman‐ageabilityoftheevidence
2emsp |emspMETHODS
21emsp|emspAims
Thequestiontobeaddressedwaswhatdoestheexistinginterna‐tionalresearchandwiderliteraturetellusaboutcurrentresponsestoendoflifecareforpeoplewithsubstanceproblemsThequestionfocussed initially on care responses andwas broken down furtherintothefollowingaims
1 Toexploreanddocumenttheevidencebasethatalreadyexistson responses to end of life care for people with substanceproblems
ARapidEvidenceAssessment (REA)methodologywas identifiedas themostappropriate research tool touse toenablea speedyidentification of key pieces of evidence This would inform ourwiderstudyandprovideareferencedocumenttounderpinfurtherworkon this topic in policy or practiceREAs canbedefined asproviding
lsquohellipamorestructuredandrigoroussearchandqualityassessmentof theevidencethana literaturereviewrsquobutonecritique is that ithasnarrowerparametersandisnotldquoasexhaustiveasasystematicreviewrdquo (Department for InternationalDevelopment (DFID) 2017online) REAs therefore stem fromSystematic Reviewmethodol‐ogythathistoricallyfocusoninterventionsandtheireffectivenessusingexperimentalorquasi‐experimentalresearchdesignBycon‐trastREAsareusedtogainanoverviewoftheprevalenceandqual‐ity of evidence focusing on topic areas to support commissioningorprogrammingdecisions and identifyingevidencegaps requiringfurtherresearch (DFID2017online)AnREAisconductedwithinashorter timeframethanaSystematicReviewbut retains thekeycharacteristicsofsystematicreviewtransparencyreplicabilityandcomprehensiveness (Government Social Research (GSR) and EPPICentre2009GalvaniampForrester2011GSR2013)
Ourinitialgoalwasestablishingiftherewereanyinterventionsfor this group As the review proceeded the lack of a cohesivebody of evidence to answer the research questions indicated be‐cameclearThereforeacombinationofaREAandsystematicmap‐ping methodology (Clapton Rutter amp Sharif 2009) was adoptedSystematicmapsaimtodescribetheexistingliteratureandgapsinthe literature in a broad topic area and the literature quality andcontentcanbeanalysedindepthormoresuperficiallyasappropri‐ate to individualprojects (Claptonet al 2009p11)The reviewthereforewasconductedwiththerigourofplanningandapproachofanREAHoweverasa resultofourexperienceconducting theREAandthediversityofthe literaturefound italsoencompassedsystematicmappingofthereviewsfindings
23emsp|emspSearch methods
ThisREAwasan iterative review the findingsofwhich sought tosupportthewiderprogrammeofresearchofwhichitwaspartToensureitdidsofiveseparateprotocolsweredevelopedfortheini‐tial searches that spokedirectly to the focusof theother strandsoftheresearchThefirstprotocolexaminedtheprevalence and in‐cidenceofpalliativeendoflifecareandco‐existingsubstanceuseproblematic substance use The second reviewed interventions forpeopleusingalcoholorotherdrugswithco‐existingendoflifecon‐ditions and their families carers friends The third examined thepersonalfamilysocial experienceschallengesandopportunities forpeopleusingalcoholorotherdrugswithco‐existingendoflifecareconditions The fourth and fifth searches focused on bothprofes‐sionalclinicalpractice challengesconcernsforpractitionerssupport‐ing thoseusingalcoholorotherdrugswithco‐existingendof life
careconditionsandgood practice modelsandcarepathwaysinrela‐tiontothispopulation
TheseoriginalprotocolsforthereviewwereadaptedastheREAproceededduetothevery limitedrelevantdatageneratedbythemThisstrategyallowedustorefinethequestionsandthefocusoftheresearch once the reviewwas being conducted Subsequently thesearchtermswerebroadenedtocapturealltheliteraturewithinthisfieldwithinoursearchparameters(seeTable1below)
ThisstrategyisoneofthefeaturesofaniterativeasopposedtoanapriorireviewTwobroadgroupsofevidencewererelevantexistingresearch on palliative and end of life care and existing research onsubstanceuseThesearchprotocolneededtoensurethesebodiesofevidencewereincludedCommontoallfivesearcheswerethedata‐basesAmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocial Care Online Web of Knowledge (including Social ScienceCitationsIndex)WebofScienceSSCISamshaNIAAA
Studiesreviewedwerepublishedinpeer‐reviewedjournalsbe‐tween 1 January 2004 and 1 August 2016 The rationale for thestartingdateparameterof2004wasthepublicationofkeyreportsconcerningendoflifeandpalliativecarethatyear(DepartmentofHealth2004National Institute forClinicalExcellence2004)Anadditional limiterwas that thepaperswerewritten inEnglishWeexcludedtobacco‐relatedstudiesExcludedpaperswerecodedA‐E(seecodingtablebelowinTable2)
24emsp|emspData extraction and synthesis
Given the dearth of intervention studies and the limited literaturefound through the initial searching a systematicmapping approachwasadoptedThisfacilitatesavisualmapoftheexistingliteratureonthebroadtopicofsubstanceuseandendoflifecareItalsoallowedcategorisationof theexistingevidence inanumberofways includ‐ing its methodology focus and country of origin Textual narrativesynthesis (Barnett‐Page ampThomas 2009)was used to explore anysimilaritiesdifferencesandrelationshipsbetweenpapersThetextualnarrativeapproachinvolvesacommentarydescribingstudycharacter‐isticscontextqualityandfindingsThiswasfacilitatedbyathree‐stepprocess(LucasBairdAraiLawampRoberts2007)including(a)studygroupinginwhichstudiesbelongingtoeachofthesub‐groupsforex‐amplepainmanagementoralcoholwereidentifiedwithtworesearch‐ers independently categorising and theming the papers (b)Themesproducedbyeachresearcherwerecomparedandaconsolidatedlist
produced(c)sub‐groupsynthesiswerethendevelopedIftherewereanydisagreementa third researcherwould reviewthepaperStudycommentarieswereproducedinanexcelfiletosummarisekeyaspectsofthepapersinrelationtothesub‐groupwithinwhichtheywerein‐cludedThisincludedbothkeyfindingsandorrecommendationsthatspeaktotheaimsofthisREAIntermsofqualitycontroleachcom‐mentarywasreviewedbyasecondresearcherindependentlytoassessthesummaryinrelationtotheoriginalpaper
25emsp|emspQuality appraisal
The quality of the individual studieswas assessed based on sixprinciplesderivedfromDFIDguidanceeachofwhichhaveanum‐berofqualityrelatedquestionswithintheprinciples(DFID2014)Thekeyprinciples are (a)Conceptual framing (b)Transparency(c) Appropriateness (d) Cultural sensitivity (e) Validity and (f)Cogency
Therewere60papersgeneratedfromoursearchafterapplyingtheinclusionandexclusioncriteriaTheywerehoweverextremelydiverse inmethodology focus and audience The systematicmap(Figure 2) illustrates the range of evidence found among the 60papers
C Isnotrelatedtopalliativeorendoflifecareorsubstanceuse
D Notaboutpracticeorpathwaysprofessionalpracticeconcernsfamilyandsocialnetworks
E Doesnotmeettheabovebutisofinterestandrelevance(setaside)
emspensp emsp | emsp5WITHAM eT Al
31emsp|emspThematic groups
Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology
32emsp|emspPain management
Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015
Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)
In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician
F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits
n = 4384
First screening of tles Total removed
n = 4232
Second screening of abstracts
Total removedn = 82
Not about sub use n = 25Not about EOL care n = 36
Neither about sub use or EOL n = 21
Full text readingTotal removed
n = 10
Not about sub use n = 6Not about EOL care n = 2
Neither about sub use or EOL n = 2
Final sample for inclusionn = 60
Not about sub use or EOL n = 4232
6emsp |emsp emspensp WITHAM eT Al
33emsp|emspHomeless and marginalised groups
Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)
34emsp|emspHomeless populations
The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006
Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)
F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare
Case study (n =10) 357Description of practice (n =8) 285
Literature review (n = 5) 178Systematic review (n=3) 107
Book chapter (n=2) 71
emspensp emsp | emsp7WITHAM eT Al
MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons
35emsp|emspMental Health HIV and miscellaneous groups
MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof
mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication
36emsp|emspAlcohol
Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)
Study quality Symbol Type of study Number of all studies
High(14ndash18) uarr Primary Secondary
9 281
Moderate(10ndash13) rarr Primary Secondary
18 562
Low(6ndash9) darr Primary Secondary
5 156
Total 32 100
TA B L E 3 emspQualityratingsofempiricalliterature
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
4emsp |emsp emspensp WITHAM eT Al
careconditionsandgood practice modelsandcarepathwaysinrela‐tiontothispopulation
TheseoriginalprotocolsforthereviewwereadaptedastheREAproceededduetothevery limitedrelevantdatageneratedbythemThisstrategyallowedustorefinethequestionsandthefocusoftheresearch once the reviewwas being conducted Subsequently thesearchtermswerebroadenedtocapturealltheliteraturewithinthisfieldwithinoursearchparameters(seeTable1below)
ThisstrategyisoneofthefeaturesofaniterativeasopposedtoanapriorireviewTwobroadgroupsofevidencewererelevantexistingresearch on palliative and end of life care and existing research onsubstanceuseThesearchprotocolneededtoensurethesebodiesofevidencewereincludedCommontoallfivesearcheswerethedata‐basesAmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocial Care Online Web of Knowledge (including Social ScienceCitationsIndex)WebofScienceSSCISamshaNIAAA
Studiesreviewedwerepublishedinpeer‐reviewedjournalsbe‐tween 1 January 2004 and 1 August 2016 The rationale for thestartingdateparameterof2004wasthepublicationofkeyreportsconcerningendoflifeandpalliativecarethatyear(DepartmentofHealth2004National Institute forClinicalExcellence2004)Anadditional limiterwas that thepaperswerewritten inEnglishWeexcludedtobacco‐relatedstudiesExcludedpaperswerecodedA‐E(seecodingtablebelowinTable2)
24emsp|emspData extraction and synthesis
Given the dearth of intervention studies and the limited literaturefound through the initial searching a systematicmapping approachwasadoptedThisfacilitatesavisualmapoftheexistingliteratureonthebroadtopicofsubstanceuseandendoflifecareItalsoallowedcategorisationof theexistingevidence inanumberofways includ‐ing its methodology focus and country of origin Textual narrativesynthesis (Barnett‐Page ampThomas 2009)was used to explore anysimilaritiesdifferencesandrelationshipsbetweenpapersThetextualnarrativeapproachinvolvesacommentarydescribingstudycharacter‐isticscontextqualityandfindingsThiswasfacilitatedbyathree‐stepprocess(LucasBairdAraiLawampRoberts2007)including(a)studygroupinginwhichstudiesbelongingtoeachofthesub‐groupsforex‐amplepainmanagementoralcoholwereidentifiedwithtworesearch‐ers independently categorising and theming the papers (b)Themesproducedbyeachresearcherwerecomparedandaconsolidatedlist
produced(c)sub‐groupsynthesiswerethendevelopedIftherewereanydisagreementa third researcherwould reviewthepaperStudycommentarieswereproducedinanexcelfiletosummarisekeyaspectsofthepapersinrelationtothesub‐groupwithinwhichtheywerein‐cludedThisincludedbothkeyfindingsandorrecommendationsthatspeaktotheaimsofthisREAIntermsofqualitycontroleachcom‐mentarywasreviewedbyasecondresearcherindependentlytoassessthesummaryinrelationtotheoriginalpaper
25emsp|emspQuality appraisal
The quality of the individual studieswas assessed based on sixprinciplesderivedfromDFIDguidanceeachofwhichhaveanum‐berofqualityrelatedquestionswithintheprinciples(DFID2014)Thekeyprinciples are (a)Conceptual framing (b)Transparency(c) Appropriateness (d) Cultural sensitivity (e) Validity and (f)Cogency
Therewere60papersgeneratedfromoursearchafterapplyingtheinclusionandexclusioncriteriaTheywerehoweverextremelydiverse inmethodology focus and audience The systematicmap(Figure 2) illustrates the range of evidence found among the 60papers
C Isnotrelatedtopalliativeorendoflifecareorsubstanceuse
D Notaboutpracticeorpathwaysprofessionalpracticeconcernsfamilyandsocialnetworks
E Doesnotmeettheabovebutisofinterestandrelevance(setaside)
emspensp emsp | emsp5WITHAM eT Al
31emsp|emspThematic groups
Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology
32emsp|emspPain management
Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015
Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)
In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician
F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits
n = 4384
First screening of tles Total removed
n = 4232
Second screening of abstracts
Total removedn = 82
Not about sub use n = 25Not about EOL care n = 36
Neither about sub use or EOL n = 21
Full text readingTotal removed
n = 10
Not about sub use n = 6Not about EOL care n = 2
Neither about sub use or EOL n = 2
Final sample for inclusionn = 60
Not about sub use or EOL n = 4232
6emsp |emsp emspensp WITHAM eT Al
33emsp|emspHomeless and marginalised groups
Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)
34emsp|emspHomeless populations
The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006
Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)
F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare
Case study (n =10) 357Description of practice (n =8) 285
Literature review (n = 5) 178Systematic review (n=3) 107
Book chapter (n=2) 71
emspensp emsp | emsp7WITHAM eT Al
MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons
35emsp|emspMental Health HIV and miscellaneous groups
MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof
mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication
36emsp|emspAlcohol
Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)
Study quality Symbol Type of study Number of all studies
High(14ndash18) uarr Primary Secondary
9 281
Moderate(10ndash13) rarr Primary Secondary
18 562
Low(6ndash9) darr Primary Secondary
5 156
Total 32 100
TA B L E 3 emspQualityratingsofempiricalliterature
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
emspensp emsp | emsp5WITHAM eT Al
31emsp|emspThematic groups
Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology
32emsp|emspPain management
Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015
Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)
In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician
F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits
n = 4384
First screening of tles Total removed
n = 4232
Second screening of abstracts
Total removedn = 82
Not about sub use n = 25Not about EOL care n = 36
Neither about sub use or EOL n = 21
Full text readingTotal removed
n = 10
Not about sub use n = 6Not about EOL care n = 2
Neither about sub use or EOL n = 2
Final sample for inclusionn = 60
Not about sub use or EOL n = 4232
6emsp |emsp emspensp WITHAM eT Al
33emsp|emspHomeless and marginalised groups
Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)
34emsp|emspHomeless populations
The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006
Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)
F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare
Case study (n =10) 357Description of practice (n =8) 285
Literature review (n = 5) 178Systematic review (n=3) 107
Book chapter (n=2) 71
emspensp emsp | emsp7WITHAM eT Al
MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons
35emsp|emspMental Health HIV and miscellaneous groups
MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof
mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication
36emsp|emspAlcohol
Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)
Study quality Symbol Type of study Number of all studies
High(14ndash18) uarr Primary Secondary
9 281
Moderate(10ndash13) rarr Primary Secondary
18 562
Low(6ndash9) darr Primary Secondary
5 156
Total 32 100
TA B L E 3 emspQualityratingsofempiricalliterature
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
6emsp |emsp emspensp WITHAM eT Al
33emsp|emspHomeless and marginalised groups
Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)
34emsp|emspHomeless populations
The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006
Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)
F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare
Case study (n =10) 357Description of practice (n =8) 285
Literature review (n = 5) 178Systematic review (n=3) 107
Book chapter (n=2) 71
emspensp emsp | emsp7WITHAM eT Al
MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons
35emsp|emspMental Health HIV and miscellaneous groups
MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof
mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication
36emsp|emspAlcohol
Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)
Study quality Symbol Type of study Number of all studies
High(14ndash18) uarr Primary Secondary
9 281
Moderate(10ndash13) rarr Primary Secondary
18 562
Low(6ndash9) darr Primary Secondary
5 156
Total 32 100
TA B L E 3 emspQualityratingsofempiricalliterature
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
emspensp emsp | emsp7WITHAM eT Al
MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons
35emsp|emspMental Health HIV and miscellaneous groups
MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof
mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication
36emsp|emspAlcohol
Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)
Study quality Symbol Type of study Number of all studies
High(14ndash18) uarr Primary Secondary
9 281
Moderate(10ndash13) rarr Primary Secondary
18 562
Low(6ndash9) darr Primary Secondary
5 156
Total 32 100
TA B L E 3 emspQualityratingsofempiricalliterature
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
8emsp |emsp emspensp WITHAM eT Al
TA B L E 4 emspFinalincludedpapers
FINAL PAPERS (n = 60) Quality indicator Country of Origin
ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335
Non‐empirical USA
BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6
15 USA
BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012
9 UK
BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710
Non‐empirical UK
BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263
8 USA
Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125
Non‐empirical Canada
CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409
Non‐empirical USA
ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009
12 USA
ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445
14 USA
ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009
Non‐empirical USA
CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756
DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370
Non‐empirical Canada
Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352
15 USA
FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
emspensp emsp | emsp9WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010
Non‐empirical Australia
KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838
KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404
KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915
KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006
KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344
MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283
6 Australia
McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177
McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312
14 Canada
McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855
12 Canada
TA B L E 4 emsp (Continued)
(Continues)
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
10emsp |emsp emspensp WITHAM eT Al
FINAL PAPERS (n = 60) Quality indicator Country of Origin
MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005
MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544
Non‐empirical USA
Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148
Non‐empirical UK
PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111
11 Canada
PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036
Non‐empirical USA
PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357
Non‐empirical USA
PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451
ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630
Non‐empirical USA
RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x
12 UK
RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897
8 USA
SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8
13 USA
SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7
12 USA
StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x
12 Sweden
SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231
Non‐empirical Australia
TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
emspensp emsp | emsp11WITHAM eT Al
37emsp|emspMiscellaneous
Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife
isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)
TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)
Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)
Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their
FINAL PAPERS (n = 60) Quality indicator Country of Origin
WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19
Non‐empirical USA
WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236
WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160
12 USA
TA B L E 4 emsp (Continued)
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
12emsp |emsp emspensp WITHAM eT Al
effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel
Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)
41emsp|emspLimitations
REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth
5emsp |emspCONCLUSION
ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision
ORCID
Gary Witham httpsorcidorg0000‐0002‐8575‐7533
R E FE R E N C E S
Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X
Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59
Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress
Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45
BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012
Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea
Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
emspensp emsp | emsp13WITHAM eT Al
age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005
ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003
Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x
CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25
Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf
Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments
DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH
Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99
GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom
GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch
Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423
GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf
GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment
HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44
Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581
Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7
LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4
LuchenskiSMaguireNAldridgeRWHaywardAStoryAPerriPhellipHewettN(2018)WhatworksininclusionhealthOverviewforeffective interventions formarginalised and excludedpopulationsLancet391266ndash280
McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369
Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020
NationalInstituteforHealthandClinicalExcellence(2004)Guidance on cancer services Improving supportive and palliative care for adults with cancerNICELondon
OfficeforNationalStatisticsandNHSDigital(2017)Statistics on alco‐hol England 2017 Retrieved from httpsdigitalnhsukcataloguePUB23940
Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x
RalphsRWilliamsLAshewRampNortonA(2017)AddingspacetothePorridgeThedevelopmentofasyntheticCannabinoidmarketinanEnglishPrisonInternational Journal of Drug Policy4057ndash69httpsdoiorg101016jdrugpo201610003
Ritter A amp Cameron J (2006) A review of the efficacy and effec‐tiveness of harm reduction strategies for alcohol tobacco andIllicit drugsDrugs and Alcohol Review 25(6) 611ndash624 httpsdoiorg10108009595230600944529
RolfeDERamsdenVRBannerDampGraham ID (2018)UsingqualitativeHealthResearchMethods to improvepatient andpub‐licinvolvementampengagementinresearchResearch Involvement and Engagement449httpsdoiorg101186540900‐018‐0129‐8
TaylorBIrvingHMKanteresFRoomRBorgenGCherpitelChellipRehmJ (2010)Themoreyoudrink theharderyou fallAsys‐tematic review andmeta‐analysis of how acute alcohol consump‐tion and injury or collision risk increase together Drug amp Alcohol
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807
WilsonPMathieEKeenanJMcNeillyEGoodmanCHoweAhellipPeckhamS(2015)ResearchwithpatientandpublicinvolvementA realist evaluation ndash the RAPPORT studyHealth Service Delivery Research31ndash176httpsdoiorg103310hsdr03380
WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf
How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807