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Bashir Jiwani, PhD
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EthicsandResourceAllocation:
HowtoRespectHumanDignityintheMakingof
ToughChoices
Hospice&Pallia-veCareManitoba19thAnnualProvincialConference
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Bashir Jiwani, PhD
Ethicist & Director
Fraser Health Ethics Services
Whoshouldgetadmissiontoinpa-enthospice/pallia-vecarebeds?
pa%ent age Lengthof%mewai%ng
An%cipatedlengthofstay
Acuityofphysicalpain
Acuityofpsychosocialdistress
Familycopingwell
Currentplace
Nursingcareneeds
James 50 Twoweeks
Ac-vedeteriora-on
high medium no Acutecare
high
Tina 75 3months
Longertermstay
medium high Nofamily
Assistedliving
medium
Akbar 80 1month
Hasapproachedac-vedeteriora-on,thenimprovedsohardtosay
medium low Stretched,butnotincrisis
home high
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Bashir Jiwani, PhD
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Howdoyourespond–tothesystem?
• Youarealeader.
• Ahomecarenursecallsyou.• Sheisgoingtovisitapa-enttoday,whosefamilyisdoingthebest
theycantosupporttheirfatherwhoisdying.
• Sheknowsthatheandtheywanttostayathome,butmayhaveques-onsorneedsupport.
• HowdotheyaccesssupportaSerthebusinessdayisover?
• Youseethisasabroaderissue.Youareverysensi-vetothecomplexi-esofhealthcaredecision‐makingandthechallengesfacingleadersandprac--onersatalllevels,butfeeltheneedtoadvocateforbeVercareforthispopula-on.
• Howdoyouengagethesystemaboutit?
Whoshouldgetyour-me?
• Youareahomecarenurse.
• YouarriveatworkonMondaymorningandseetherosterofpa-entsawai-ngyoursupport.
• Thereare20pa-entsandfamiliesonthelist.
• Ifyouweretogiveeveryonethe-metheyneeded,itwouldtake80hours.
• Youhaveonly30hourstoallocate.
• Whoshouldgetyour-me?
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Bashir Jiwani, PhD
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1. Ethics,values&budgets
2. EthicsDimensionsofresource
alloca%on
3. ThreePartsofresourcealloca%on
policy
4. Tools/keysforengaging
ETHICS AS JUDGMENT
God-Squad Ethics Police
Unhelpful understandings
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Bashir Jiwani, PhD
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ETHICS AS COMPLIANCE
Unhelpful understandings
Ethics as living with integrity
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Bashir Jiwani, PhD
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Budgetscommunicatevalues
Yourdecisions,ac-onsandaYtudesareallbasedonyourvaluesandbeliefs
Yourbudgetisasummaryofwhatisimportanttoyouandhowyouwillgetthere
Valuesconcern theactualdecisionyoumake(content)
Howyoumakethedecision(process)
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Respect
Uncondi-onalposi-veregard
Empathe-cunderstanding
Meaningfulengagementofideas
Inafiduciaryrela-onship: guidingdecisionsbasedon
truster’svaluesandbeliefs
Inarela-onshipofin-matepartners: Collabora-on
Inarela-onshipof(whatshouldbe)publicequals: Transparentdecisionsbased
oninformed,inclusive,recursive,reflexivedelibera-on
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SubstantiveValues:ModelsofDistributiveJustice
Whatisourunderstandingofjus-ce? Trea-ngeveryoneequally?
Trea-ngeveryoneequitably?
Maximizingoverallhappiness?
Buildingcommunitysolidarity?
Respec-ngindividualliberty?
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Differencesinhealth
Jus-fied(thoughunequal) Overallhealthbetween
youngandold
Prostatecancerratesbetweenmenandwomen
Unjus-fied(unequalandinequitable) Nutri-onalstatus
betweengirlsandboys
Immuniza-onstatusbetweengirlsandboys
Accesstocarebasedonrace
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Bashir Jiwani, PhD
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InequityinHealth
Inequali-esinhealththatareunjust/unfair
Unjust/unfairifsystema-callyputgroupsofpeoplealreadysociallydisadvantagedatfurtherdisadvantage
Systema-cinequalityinhealthbetweenmoreandlessadvantagedgroupsinsociety
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GroupsatriskinCanada
Poor
Homeless
Aboriginalcommuni-es
Immigrant&refugeepopula-on
Peoplewithphysicalandmentaldisabili-es
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Meritocracyandvulnerablepopulations
Peoplewithdemen-a...“havenoknowledgeleStoconveytotheirchildren,theynolongerareintertwinedwiththecommunitybutratherhavelostthememoryofrela-onships;andtheyarethereforeeasilytransgressedandabandoned.”(Post,1995)
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Allocation levels: forward and back
MACRO
MESO
MICRO
MEGA ALLOCATION!
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Bashir Jiwani, PhD
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IsequityaCanadianvalue?
Ifso,thishasimplica-ons Withinindividualcareprograms
Withinthehealthsystem
Withinmacrogovernmentalpolicy
Forouroutlookonforeignaffairs
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2.Salientethicsdimensionsofdecisions…
Mandateofandrela-onshipsbetweendecision‐makers
Consulta-onofothers Experts
Thoseimpacted
Decisionitself
Decisionfollow‐up
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Howadecisionismade
Whospeaks?
Howisdifferencedealtwith?
Howaredecisionsmade?
Whatstandardswillbeusedtodecidewhatcountsasevidence?
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Theprocessofdecision‐making
Implicitra-oning Discre-onofprofessionals
Subjec-ve
Sensi-vetopa-entneeds?
Focusonthequalityofthestory
Moresensi-vetocultureoffacilitythanindividualpa-entneeds?
Explicitra-oning Useofformalcriteria
Transparent
Accountable
Fair?
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Decision‐makinginademocracy
Theroleandauthorityof… Elites
thoseinposi-onsofpower Butinademocracy
Experts Clinicalexperts Expertsabouttheirownlives
Publics Thecommuni-esthatthedecisionsaremeanttoserve
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Respectfulsystem‐leveldecision‐making
Uncondi-onalposi-veregard
Empathe-cunderstanding
Meaningfulengagementofideas
Inarela-onshipof(whatshouldbe)publicequals: Transparentdecisions basedondelibera-onthatis
informed, inclusive, recursive, reflexive
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Bashir Jiwani, PhD
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WhatdecisionismadeCriteriaforadmission
• Age
• Deservingness
• Seniority–howlongwai-ng
• Acuityofpain,symptomseverity,needforsymptomcontrol
• Psychosocialcare/crisis
• Risktophysicalsafety
• Poli-calsignificance
• Pa-entbestinterests
• Probablelongertermstay
• Terminalcare–ac-vedeteriora-on
• Respitecare‐Risktofamilystress
• Con-nuingcare
• Rehab
• Clinician’spersonalknowledgeofpa-ent
• Dependencylevel
• Nursingcareneeds
Howarepeoplesupported?
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3.3partsofaresourceallocationpolicy
Thecriteriaused
Whousesthecriteria
Theprocessbywhichthecriteriaareused
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Geoff, Tony, and Betty Ann agree to go on a holiday
Geoff: family castle in Italy Tony: Montana Betty Ann: Hawaii
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How about these criteria?
Definite option Maybe Not an option
Where does this take us?
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Ok, how about this criterion… Have a good time…
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Bashir Jiwani, PhD
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OK, it’s important that…
Access to fine wine Email access Access to family Within budget Good business facilities Access to mountain biking Exposure to new culture
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Prioritized, it’s important that…
Most important Access to fine wine Access to mountain biking Access to family Within budget
Imortant Email access Good business facilities Exposure to new culture
ITALY, it is!
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Bashir Jiwani, PhD
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But wait…
Geoff always gets his way! NOT Italy!
4.Stepsforward
Theskillsofethics
Understandingourownvaluesandbeliefs
Listeningtootherstounderstandtheperspec-vestheyarecomingfrom
Engagingindelibera-onrespecoully
Ar-cula-ngthera-onalebehinddecisions
Ac-ngondecisions,evenwhendifficult
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Bashir Jiwani, PhD
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Forleaders
Makedecisionstransparent
Usesystema-cprocesses
Createacultureofappropriateconsulta-on&engagement
Supportthoseimpacted
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Stepsahead–forallofus
Usesystema-cprocessesforanalyzingissues
Useavailableethicsresources
Pushauthoritywhereappropriate
LookaSeryourselves
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Bashir Jiwani, PhD
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Makingethicsrealatthe
systemlevel
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Weareguidedbyvalues,whetherwerecognizeitornot
Tothinkaboutandactonthevalueswehavereasontocherish,asopposedtovaluesthathavebeensubtlyinculcatedinusistotakecontrolofourlives‐tobefree
EthicsasFreedom