British Heart Foundation heart failurepalliative care project
report: TheGlasgow and Clyde experienceBritish Heart Foundation
heart failurepalliative care project report:The Glasgow and Clyde
experienceFinal Report October 2010Author: Yvonne Millerick, BHF
heart failure palliative care specialist nurse,NHS
GG&CCo-authors: Jackie Wright, BHF heart failure palliative
care specialist nurse,NHS GG&C; Alison Freeman, Clinical
effectiveness co-ordinator, NHS GG&CAcknowledgementsThe authors
would like to thank:All health and social care professionals who
contributed to this project for their assistance andongoing
support, especially those people working across heart failure,
cardiology, medical, care of theelderly, specialist palliative
care, generalist palliative care, social, voluntary and primary
care settingswho took time out of their busy schedules to give
expert advice and consideration to particular issuesas they
emerged.Mr John Carson, Lead Nurse and the NHS, Greater Glasgow
& Clyde Heart failure specialist nurseservice for their ongoing
contribution, participation, general hard work and evaluation
throughout theproject.The NHS Greater Glasgow & Clydes GP Out
of Hours Service.Amy Bowen for her editorial input and to the
Research and Evaluation Group for the BHF/Marie CurieCancer Care
Caring Together Programme for commissioning and overseeing the
evaluation.Mrs Lynda Blue, BHF Healthcare Professional Project
Manager for writing the project bid during herrole as lead nurse
for the heart failure specialist nurse service in NHS Greater
Glasgow & Clyde, and tothe British Heart Foundation for
providing the funding which made this project work
possible.Evaluation of this projectThis evaluation was funded by
the Caring Together Programme. Caring Together is a
partnershipbetween Marie Curie Cancer Care, the British Heart
Foundation and NHS Greater Glasgow and Clyde.Caring Together aims
to develop an improved approach to the management of palliative
care forpatients in the advanced stages of heart failure and their
carers.ContentsExecutive summary 1Chapter 1 Background to the
project 31.1 Heart failure and prognostic uncertainty 31.2 Heart
failure services in Glasgow 41.3 Rationale for the heart failure
palliative care project 41.4 Preceding projects 51.5 Terminology
5Chapter 2 Project aims and objectives 62.1 Project description
62.2 Aims 72.3 Objectives 72.4 Key questions 82.5 Project personnel
8Chapter 3 Project design and delivery 93.1 Project approach 93.2
Patient identification 113.3 Referral 113.4 Assessment 123.5
Planning care 123.6 Joint visits and collaborative working 123.7
Ethical issues 12Chapter 4 Data collection 144.1 Method 144.2 Data
sources 144.3 Development of the heart failure palliative care
database 144.4 Data analysis methodology 14Chapter 5 Results -
Quantitative 155.1 Identification of group 3 patients 155.2
Demographics 165.3 Symptom burden 165.4 Hospital utilisation 185.5
Out of hours activity 195.6 Heart failure specialist nurse contact
195.7 Contacts with other professional services 205.8 Deaths
20Chapter 6 Results Qualitative 216.1 Carers understanding and
concerns 216.2 Patients understanding and concerns 216.3 Joint
working 21Chapter 7 Discussion 237.1 Main findings 237.2
Implications 267.3 Future direction 27Appendices: 281 Framework 282
Data tables 333 Carer analysis 404 Patient analysis 425 Staff
questionnaires 436 Joint working 507 Advanced communication bid 518
Database specification 569 References 72Heart failure palliative
care 1Executive summaryHeart failure is an increasingly common,
chronic, progressive and debilitating condition with asignificant
physical, social and psychological symptom burden. Despite advances
in the evidence basedmanagement of heart failure, mortality rates
remain high and heart failure is associated with a meanlife
expectancy of 3.1 years from diagnosis. Sudden death is a
significant feature of the syndrome, butequally, patients with
heart failure have high utilisation rates of both secondary care
outpatient andin-patient services.Since December 2006, the NHS
Greater Glasgow & Clyde Heart failure specialist nurse service
(HFSNS)has been involved in a three year British Heart Foundation
funded supportive palliative care project. Theproject aimed to
systematically define a set of patients identified by the heart
failure specialist nursesfrom their existing patient caseload who
would be appropriate for a supportive palliative care approach.A
framework was designed to identify, comprehensively assess and
implement realistic goals of care forthe patients and their
caregivers.A wholetime equivalent post was created to support the
project and was staffed jointly by a heart failurespecialist nurse
and a specialist palliative care nurse. This partnership approach
enabled the teamsto share skills and support the heart failure
specialist nurses (HFSNs) with joint visits and work-basedlearning
opportunities, using the skills and experiences from the two
specialties.The following report describes the project, its aims
and objectives and provides an analysis of the datagathered.
Overall, the project aimed to consider whether a supportive
palliative care approach can beencompassed within the existing
HFSNs role; whether patients can be identified appropriately in
viewof such an uncertain trajectory; and the extent to which the
supportive/palliative care needs of patientsand their care givers
is currently being met within the HFSNS.Key findings from the
projectThe project has highlighted that it is achievable to
integrate a supportive palliative care approacheffectively into the
existing HFSN role. Some HFSNs demonstrated they were able to
implement thisapproach effectively with minimal or no support,
whilst others required additional and continuedsupport, which was
exclusively available from within the project. The report shows
that it does requireadditional time from the nurses to take a more
holistic approach to care and to engage in some of thecomplex
conversations with patients and carers about priorities for care.
Without additional time andongoing support for some HFSNs it
remains unclear whether this is sustainable within the constraints
ofthe usual service.The inclusion criterion identified a
significant percentage of patients in the last months of life. A
numberof patients did not meet the inclusion criteria but
nonetheless died during the project, many of whomwere either still
being optimised on evidence-based therapy or died suddenly. Given
the uncertaintrajectory of heart failure, this was not surprising.
More work to develop robust and accurate inclusioncriteria and
increased HFSN experience in patient identification would be
welcome.Heart failure palliative care 2Meeting the supportive
palliative care needs of patients is most challenging where the
focus of care isplaced on the heart failure symptoms and
pharmacological regimes, with less attention paid to the
holisticneeds of patients. It may be that adapting the standard
assessment process to include considerationof holistic needs would
improve earlier identification of patients and also help increase
the skills andconfidence of the HFSNs in engaging patients in
discussions about their priorities for care.Multi-professional
working is a vital component of supporting patients with advancing
heart failure, andthere are examples within the project of the
value of discussions and co-ordinated approaches to patientsupport
that bring the HFSNs and specialist palliative care services
together.Education and training to support the HFSNS across care
settings is vital and should be sustained,including access to
advanced communication skills training. Further assessment of the
training needsof the HFSNs, and particularly for the wider
community of health and social care professionals who areinvolved
in the care of patients with advancing heart failure, is also
required.Executive summaryHeart failure palliative care 3Chapter 1
Background to the project1.1 Heart failure and prognostic
uncertaintyHeart failure is a common, chronic, progressive and
debilitating condition that leads to extensive
physical,psychological, social and spiritual problems.1 The
Scottish Intercollegiate Guidelines Network (2007) definechronic
heart failure as a complex clinical syndrome that can result from
any structural or functionalcardiac or non-cardiac disorder that
impairs the ability of the heart to respond to physiological
demandsfor increased cardiac output.2 Heart failure is not a
diagnosis; it is a syndrome that is characterisedclinically by
breathlessness, effort intolerance, fluid retention, and poor
survival.2 The commonest causeof heart failure is myocardial
dysfunction; with about two thirds of this related to coronary
heart disease(CHD), usually secondary to myocardial infarction.2
Heart failure is the only cardiovascular diseaseincreasing in
incidence.2 A combination of improved cardiological treatments and
risk factor trends arethought to be responsible for this.1 It is
estimated that 66,000 new cases of heart failure are diagnosedeach
year in the UK and that 912,000 of the population aged 45 years and
over have definite/probableheart failure. Life expectancy is
increasing and the incidence of heart failure in the 75-84 years
age groupis 7% and 15% in those aged 85 years and above.3 The
lifetime risk of heart failure is one in five for bothmen and
women. The high levels of morbidity associated with heart failure
are demonstrated by highutilisations of both secondary care
outpatient and in-patient services. NHS Greater Glasgow and
Clydefigures for 2008 recorded 1890 hospital discharges with a
primary diagnosis of heart failure. Thesegenerated a total of
24,230 bed days occupied giving a mean length of hospital stay of
12.8 days. Thesocietal costs of heart failure are also extremely
high and are estimated to be equivalent to 1.91% of thetotal NHS
expenditure, with the predominant cost being
hospitalisation.4Despite significant advances in the evidence based
management of heart failure, mortality rates remainhigh.4,5 Heart
failure is, in most cases, incurable, and with the notable
exception of lung cancer, heartfailure is as malignant as many
common cancers and is associated with a mean life expectancy of
3.1years from diagnosis.5 The British Heart Foundation (BHF)
estimates that 4% of deaths each year in theUK are attributable to
heart failure and that 40% of deaths occur within one year of
diagnosis with only25% of men and 36% of women surviving to five
years.1-5 Sudden death remains a significant feature;figures quoted
in the wider literature range from 25-50% and can occur at any
stage during the course ofthe heart failure disease trajectory. The
increasing use of automated implantable defibrillators
however,should positively impact on this risk.Heart failure is
characterised by an unpredictable decline with only a proportion of
patients havinga demonstrable deterioration. Many patients
experience acute symptomatic exacerbations thatrespond positively
to medical intervention. For others however, periods of decline can
be relentlessand interspersed with increasing symptoms that are
distressing, debilitating and difficult to treat.6
Thisunpredictable disease trajectory invariably leads to
uncertainty and subsequent prognostic paralysis.14,15Heart failure
very seldom comes in isolation and is often associated with
co-morbid conditions, cognitivedecline, polypharmacy and increasing
social need.27 Consequently, living with heart failure and
itsco-morbidity places a considerable burden on patients and their
care givers. It also presents severalchallenges for healthcare
professionals working across different care settings.Heart failure
palliative care 4Chapter 1: Background to the project1.2 Heart
failure services in GlasgowThe Glasgow heart failure specialist
nurse service (HFSNS) is nurse-led and was established followinga
randomised controlled trial carried out in Glasgow between
1997-1999. The trial showed significantreduction in hospital
re-admissions and hospital bed days related to heart failure due to
left ventricularsystolic dysfunction (LVSD). As a result of the
positive outcome of the trial the Health Board in Glasgowfunded the
nurse-led city wide service, which commenced operation in July 2000
and has beensuccessfully replicated throughout the UK.7At present,
patients in the service are referred either from cardiology
outpatient clinics or followinga hospital admission with symptoms
of heart failure decompensation secondary to LVSD,
normallyconfirmed using the gold standard of echocardiography.2 The
aim of the service is to providea combination of home visits and
nurse-led clinic review for the purpose of providing
ongoingeducation, skilful assessment and intensive monitoring
following implementation of evidence basedpharmacological and
non-pharmacological care in accordance with the service and
national guidelines.2,8The service covers eight acute hospital
sites across NHS Greater Glasgow & Clyde. This is the largest
HealthBoard in Scotland, serving 1.2 million patients, covering
almost a quarter of the entire population. Theoverall caseload of
the HFSNS is approximately 1400 patients and 1.5 whole time
equivalent (wte) heartfailure specialist nurses are located at each
of the acute hospital sites. Existing staffing levels are basedon
current levels of activity and service demand. This approach to
heart failure management is evenlydistributed throughout NHS
Greater Glasgow and Clyde and has now become the standard model
ofheart failure care throughout the UK.1.3 Rationale for the heart
failure palliative care projectThe National Council for Palliative
Care (2005) has asserted that patients dying from advanced
heartfailure remain disadvantaged compared to their peers suffering
from cancer, in terms of symptom controlmanagement, communication
and access to palliative care support networks.9 This view is
echoed bythe Scottish Partnership for Palliative Care (2008) and is
increasingly reflected in a range of UK policydocuments.10-13 Such
inequitable practice arises from the historical focus of palliative
care services beingdesigned for those patients on a cancer
trajectory, which is often associated with a quick and
predictablefunctional decline within the last six to 12 months of
life.14 By comparison, as described in Section 1.1,heart failure is
characterised by an unpredictable decline with only a proportion of
patients having ademonstrable deterioration.Several studies also
demonstrate high rates of unmet needs in areas of symptom
management,communication, decision making, emotional support and
co-ordination of supportive/palliative and endof life care.
Patients with heart failure have reported a poorer quality of life
than those with most otherchronic progressive disease.16-19 They
also lack knowledge about their condition and poor prognosiswhich
inevitably leads to inappropriate goals of care and results in
prolonged hospital re-admissions.18,19Much of the research
addressing the problem of heart failure tends to focus on the
disease itself withan emphasis on pharmacological regimes to
improve measurable outcomes. As a consequence, theexperience of
persons living with the disease is often neglected.17-19 The
subjective perspective of thosewho suffer the illness is often
dismissed by our pursuit for life prolonging medical
invention.There has begun to be a shift in attitude amongst leading
cardiologists and palliative care specialistsacross the UK with
respect to the supportive and palliative care needs of patients
with heart failure.15 Theneeds of these patients and their carers
for appropriately timed, clinically robust palliative care,
sensitiveto the prognostic uncertainty of heart failure yet still
taking account of the significant symptom burdenHeart failure
palliative care 5experienced by many patients, is now acknowledged,
at least in principle. Transferring this into everydayclinical
practice however, remains challenging, particularly in the absence
of additional clinical time,current knowledge gaps and the
availability of additional resources. This project was launched in
orderto address some of the practical issues in identifying
patients with heart failure who would benefit froma
supportive/palliative care approach, and the aim to develop an
approach to the delivery of that carewithin current service
configurations.1.4 Preceding projectsAn audit was conducted in 2005
by a local heart failure specialist nurse. The aim of this audit
was toidentify the number of patients from the heart failure nurses
existing case load that remained NYHA IIIor IV and who had ongoing
symptoms despite being on optimal tolerated evidence based heart
failuretherapy. The audit was conducted over a period of six months
across five heart failure sites in Glasgow.During the six month
audit period 73 patients were identified from a total patient
caseload of 766 (10%). Itwas concluded that these patients could
potentially benefit from a supportive palliative care approach.1.5
TerminologyHFSNS Heart failure specialist nurse serviceHFSNs Heart
failure specialist nursesLVSD Left ventricular systolic
dysfunctionNYHA New York Heart AssociationGroup 3 Patients are
regarded as group 3 following identification by the HFSNs for
inclusion intothe projectKey clinician A clinician who is well
known to the patient, for example the consultant
cardiologist,consultant physician and in a minority of occasions
the general practitioner (GP).Throughout the project the key
clinician was always a doctor.Chapter 1: Background to the
projectHeart failure palliative care 6Chapter 2 Project aims and
objectives2.1 Project descriptionSince December 2006, the NHS
Greater Glasgow & Clyde heart failure specialist nurse service
has beeninvolved in a three year BHF funded supportive palliative
care project. The project set out to define a setof patients who
could in the first instance be identified by the HFSNs from their
existing patient caseload.Following identification, discussions
would then take place with the key clinician to determine if
theyagreed that the patient was appropriate for a supportive
palliative care approach. Using a consistentlyapplied set of
inclusion criterion as described in section 3.3, the participating
patients were drawnfrom the existing HFSNS caseload. A framework
(Appendix 1) was specifically designed and developedto support the
HFSNs to identify, comprehensively assess and implement realistic
goals of care for thepatients and their caregivers throughout the
project term.Identification: The HFSNs used the table in (Appendix
1a) to categorise their existing patient case loadinto one of three
groups.l Group 1 were patients who were successfully optimised on
evidenced based heart failuretreatment and following a period of
stability were discharged from the HFSNS.l Group 2 were patients
who were still being optimised on evidenced based heart failure
therapy.Once these patients were optimised and they had a period of
stability they would also bedischarged from the HFSNS.l Group 3
were patients who were considered by the HFSNs to be on optimal
heart failuretreatment however despite this they continued to be
NYHA III or IV and had distressing anddebilitating symptoms that
were difficult for the HFSNs to manage. These patients were
lookedupon by the HFSNs as being at higher risk of living and dying
with their supportive and palliativecare needs not being
met.Discussion: following identification of a group 3 patient, the
HFSN would then initiate a discussion withthe patients key
clinician. The key clinician was either the consultant
cardiologist, consultant physicianand on very rare occasions the
patients general practitioner. The aim of this discussion was to
give the keyclinician the opportunity to comprehensively assess the
patient and to determine what the future goalsof care should be.
For some patients additional cardiological treatment to optimise
the patients evidencebased heart failure treatment was indicated
and therefore measures to implement this treatment werecommenced.
For others it was decided that they were already receiving optimal
cardiological treatmentand it was therefore agreed that these
patients could potentially benefit from a supportive palliative
careapproach (Appendix 1b).Assessment: Assessment of patient and
carer needs took many different forms and included
multiprofessionalworking with key people from all care settings. In
one HFSNS site the assessment wasconducted in the format of a
weekly multi-disciplinary team meeting. A collaborative clinic
style approachwas undertaken at a second site and for other sites
it was a one to one discussion approach betweenthe HFSN and wider
professionals working across the primary and secondary care
interface. Examples ofprofessionals who were frequently involved in
the patient and carer assessments included district
nurses,palliative care specialists, general practitioners,
occupational therapy, benefits and social work advisors.This list
was not exhaustive and changed in response to the patient and the
care givers requirements.Heart failure palliative care 7Chapter 2:
Project aims and objectivesTo support key areas of assessment, a
checklist (Appendix 1c) was created to support the HFSNs and thekey
clinician to co-ordinate the assessment discussion and decisions
regarding future goals of care.Documentation: From this discussion
and assessment a management plan highlighting the patientand carers
goals of care in relation to treatment status, advanced care
planning and priorities of care wascreated by the HFSN (Appendix
1d). This management plan was agreed and signed by the key
clinicianand then verified by all key professionals who were
involved in the discussion, assessment and ongoingdelivery of care.
A copy of this management plan was given to the patients GP who
then registeredthe patient on the Gold Standard Framework and sent
a copy of the management plan to the Out ofHours Emergency Care
Service. An additional copy was also kept in a safe place in the
patient and theircaregivers home.Fast track summary: In recognition
that hospital admission for this group of patients could not always
beavoided particularly in the absence of robust community diuretic
protocols, a fast track summary (Appendix1e) documenting the goals
of care was created in collaboration with key professionals. This
summaryinvolved an alert being registered against the patients name
on the hospital electronic system. Consequentlywhen the patient
presented to Accident and Emergency the alert would be highlighted
and the hospitalstaff would be encouraged to read the fast track
summary which would either appear on the electronichospital system
or would indicate the location within the Accident and Emergency
(A&E) departmentwhere the document was stored. The fast track
summary improved the opportunity to reduce the patientswaiting time
in A&E, offered the possibility of the patient being discharged
back home following review andappropriate treatment. In
circumstances where admission could not be avoided, it was hoped
that the fasttrack summary would hasten the patients transfer to
the ward area, inappropriate investigations could beavoided and
that the overall hospital length of stay would be reduced.This
approach to heart failure management is not commonly encompassed
within the existing heartfailure management programmes across the
UK. Similarly key aspects of assessment, discussion
anddocumentation specific to priorities of care are not regularly
encompassed within the HFSNs role inNHS Greater Glasgow and
Clyde.2.2 AimsUsing a defined cohort of patients the main aim of
this three year project was:To identify patients with advancing
heart failure disease earlier in their disease trajectory and to
develop aprofessional inclusive approach to the delivery of
supportive palliative care within the existing HFSNs role.2.3
Objectivesl To increase awareness amongst healthcare professionals,
improve access and equity of supportive,palliative and end of life
care for persons living with heart failure.l To decide if the
inclusion criterion as described in section 3.2 is sensitive enough
to identifyappropriate patients.l To encourage the integration of
the palliative care philosophy into everyday heart failure
clinicalpractice; recognising realistic goals of care at each stage
of the disease.l To support collaborative working amongst
professionals by sharing knowledge, skills and expertiseacross
different care settings.l To collect data relating to the patient,
their caregivers and the professional journey to underpinevidence
that could be used to inform future clinical practice and further
research.Heart failure palliative care 8Chapter 2: Project aims and
objectives2.4 Key questionsKey questions to be answered throughout
the project:l Can a supportive palliative care approach be
encompassed within the existing HFSNs role?l Can patients be
identified appropriately in view of such an uncertain trajectory?l
Are the supportive/palliative care needs of patients and their care
givers currently being met withinthe HFSNS?2.5 Project personnelOne
whole time equivalent nursing post was created for a period of
three years to lead the project, andinitially consisted of two part
time positions; one heart failure clinical nurse specialist
(0.5wte) and onepalliative care clinical nurse specialist (0.5
wte). However, due to changing employment circumstances,the
palliative care hours became vacant for a period of six months
until a replacement palliative carespecialist nurse joined the
project (0.3wte) for the remainder of the project term. Despite
this, the projectaims and objectives remained unchanged. A clinical
effectiveness co-ordinator was also involved withthe project and
supported the database design and extraction and analysis of
captured data. The HFSNswere actively involved in patient
recruitment and inputting data onto the specific database fields as
perproject criterion.Heart failure palliative care 9Chapter 3
Project design and delivery3.1 Project approachThe project was
funded by the British Heart Foundation for a period of three years
and began inDecember 2006. The original project bid was to
undertake the heart failure palliative care project acrossfive
heart failure sites in Glasgow. During 2007 however, Glasgow and
Clyde merged following a serviceredesign and it was agreed that the
project should encompass the three additional heart failure
siteslocated in Clyde to ensure service equity.Key project
milestonesKey milestonesJan 07Mar 07Apr 07Jun 07Jul 07Sep 07Oct
07Dec 07Jan 08Mar 08Apr 08Mar 08Jul 08Sep 08Oct 08Dec 08Jan 09Mar
09Apr 09Mar 09Jul 09Sep 09Oct 09Dec 09Jan 10Mar 10NetworkScoping
execiseDesign/developproject specificdata
baseDesign/developframework tosupport HFSNsImplementationof
database ateach siteSupport/guidance toHFSNs withdatabase
andframeworkPatientrecruitment1 Aug 31
JulyDevelopment/implementationof 2 pilotprojectsMay OctData
extraction/analysisWriting upprojectsfindingsYear 1 Jan 2007-Dec
2007Networking across NHS Greater Glasgow and Clyde to raise the
projects profile and to ensureprofessional engagement across all
care settings. This involved presenting at a variety of
meetings,educational forums and conferences.Scoping exercise to
explore existing frameworks that were being utilised elsewhere in
the heart failuremanagement programmes across the UK was conducted.
From this we were able to establish that therewas very limited
information available and developing a framework to support the
HFSNs in Glasgowwould not be duplication of work carried out
elsewhere.Heart failure palliative care 10Database: Designed and
developed the heart failure palliative care project specific
database inpartnership with the clinical effectiveness co-ordinator
for NHS Greater Glasgow & Clyde who has adesignated remit for
cardiology liaison within the acute sector.Framework: Designed and
developed a framework to support the HFSNs with patient
identification.This framework included patient inclusion criteria,
comprehensive assessment triggers, anticipatorymanagement plan
template and a fast track summary template for patients requiring
hospital admission(Appendices 1a-e).Year 2 Jan 2008 Dec
2008Networking continued and invitations to present at various
education forums and conferences increased.Database: The
development of the database and framework was completed, and
thereforeimplementation, guidance and support were conducted at
each of the eight HFSNS sites. Due to staffingdifficulties at one
of the smaller sites, it was agreed that this site would be exempt
from the data collectionprocess.Recruitment: The formal 12 month
patient recruitment into the project commenced August 2008Year 3
Jan 2009 Dec 2009HFSN support: Provision of ongoing support to each
of the HFSNs continued following patientidentification. This
support took many forms and included joint patient home visits,
collaborativediscussions with key clinicians to determine goals of
care. Meticulous data collection was supported andentered
throughout the 12 month project term and entered into the
appropriate database fields.Development of pilot sites: In keeping
with collaborative working, a six week programme wasdeveloped and
implemented in Clyde in May 2009. This programme was
collaboratively delivered andinvolved a variety of different health
and social care professionals. This provided support to the
patientand their caregiver and also supported the HFSN with ongoing
communication and goals of care.Following the success of this pilot
a second project was developed and implemented at a busier
HFSNSsite, and involved collaborative working with a cardiologist
who had a special interest in heart failure andpalliative care.
This pilot was jointly delivered in partnership with the palliative
care clinical nurse specialistand patients were referred for
comprehensive assessment and co-ordination of care following
projectidentification by the HFSNs. Both these programmes are still
operational to date. Patient recruitment intothe project stopped on
31 July.Data: Extraction and analysis of data was undertaken by the
heart failure palliative care project nurse andthe clinical
effectiveness co-ordinator. This began Sept 2009 and was completed
by Dec 2009.Jan 2010 Mar 2010Analysis and reporting of main
findings was conducted and formally written in a report
format.Chapter 3: Project design and deliveryHeart failure
palliative care 113.2 Patient identificationAll patients identified
throughout the project were known to the HFSNS, had a confirmed
diagnosis ofheart failure secondary to left ventricular systolic
dysfunction (LVSD) and were referred to the servicefollowing a
hospital admission.Patients were initially identified for inclusion
into the project by the HFSNs using the following
inclusioncriterion:l NYHA Classification III/IVl Regarded by the
HFSNs to be on optimal/target doses of evidence based heart failure
therapy as perthe local heart failure medical therapy guidelinesl
Had progressive symptoms that were distressing and/or debilitatingl
Required increased monitoring by the HFSNS eg home visits/clinic
contact and/or a hospitaladmissionl Required frequent medication
changes in response to difficult/resistant symptoms and/or change
intheir condition.Evidence based heart failure medicationPatients
identified by the HFSNs were regarded as being on optimal tolerated
doses of heart failureevidenced based therapy which included one or
all of the following:l Ace inhibitor 54%l Angiotensin receptor
blocker 16%l Combined Ace-I / ARB 3%l Betablocker 68%l Aldosterone
antagonist 40%l Loop diuretic 95%l Thiazide diuretic 33%l
Hydralazine 3%l Nitrates 16%A combination of the above therapy was
constantly tailored in response to individual patient needs
andchanging condition.NB: This data represents whether the
medication groups had ever been started, not necessarily whether or
notthey had been continued.3.3 ReferralPatients were recruited to
the project following initial identification by the HFSNs as group
3 and thenfollowing subsequent discussion and consent from the key
clinician as having met the full inclusioncriterion for the
project.Chapter 3: Project design and deliveryHeart failure
palliative care 12Chapter 3: Project design and delivery3.4
AssessmentAs described previously in section 2, patients identified
as meeting the criteria for group 3 were regardedas having
advancing heart failure. The ensuing comprehensive assessment of
these patients wasundertaken by the key clinician and HFSN at each
site to determine if additional cardiological treatmentwas required
to improve clinical outcomes. If further cardiological treatment or
device insertion wasclinically indicated, this was pursued and a
review date to assess the patients clinical response to
theadditional intervention was agreed. If no further therapeutic
interventions were thought to be indicated,the comprehensive
assessment encompassed discussions around care priorities such as
symptommanagement considerations, cardiopulmonary resuscitation
status, device deactivation and explorationof the patients
anticipated preferred place of care options. Hospital admission for
many patients withadvancing heart failure cannot be avoided.
Therefore it would be misleading to suggest to patients andtheir
carers that home directed care could be implemented and sustained
in all circumstances, particularlywhen the duration and specific
characteristics of the disease trajectory is so uncertain.3.5
Planning careFrom the assessment, key professionals were identified
to support the planning and delivery of care.Discussions regarding
planning care took many different forms across the HFSNS and ranged
from aweekly multi-disciplinary team approach, a collaborative
supportive palliative care clinic and one to oneprofessional
discussions involving a full variety of health and social care
professionals. The HFSNs wereencouraged to participate with joint
visiting both in the acute hospital and community
environmentinvolving the district nurses, palliative care
specialist nurses and professionals working with the
hospiceoutreach.3.6 Joint visits and collaborative workingThe
purpose of the joint visits was to provide professional support for
both the heart failure and palliativecare specialist nurses and
also to ensure that significant conversations around priorities of
care for thepatient and their caregiver were carried out in a
supportive environment. These discussions were viewedas part of a
process of planning care and never considered a one-off event. They
required skilful facilitationin response to patient and caregivers
questions, as well as the expertise and experience of both
heartfailure and palliative care professionals. It was hoped that
by engaging in a person-centred approach, akey principle of
palliative care, that it would encourage a shift away from a
disease-centred approach.Furthermore, it is hoped that
multi-disciplinary working would encourage an informal transfer
ofknowledge and skills and would increase confidence amongst the
professionals working with the patientand their caregivers.3.7
Ethical issuesThe project proposal was approved by leading service
providers across NHS Greater Glasgow & Clyde bywhom the project
nurse was employed. The project was regarded more as service
evaluation, and forthis reason was not classified as research.
There was no reference made to intervention groups as thecurrent
provision of care management within the HFSNS is designed around
the plethora of evidencedbased heart failure guidance (Greater
Glasgow & Clyde Medical Therapy Guidelines and SIGN). The
projectoutcomes will be aligned to the key project questions and
the recently launched supportive palliative careHeart failure
palliative care 13standard highlighted in the NHS Coronary Heart
Disease Quality Improvement Scotland 2010. Additionalconsent was
given by the lead consultant cardiologist and lead nurse for the
HFSNS who signed off theoriginal project bid application. As the
project nurse is currently working within the HFSNS across
NHSGreater Glasgow & Clyde, access to the patient sample was
approved. Confidentiality was regarded as acritical ethical issue
and disclosure of information was stored on an NHS password
protected computerdatabase which was secured in one of the HFSNS
locked offices. The HFSNs at each of the eight sitesacross NHS
Greater Glasgow & Clyde used strict inclusion criteria to
identify appropriate patients. Patientconsent was not required for
the project as all patients had previously given their consent upon
referral tothe HFSNS and existing standards of care delivery
remained unchanged. The project was conducted withthe highest level
of integrity throughout the three year project term.Chapter 3:
Project design and deliveryHeart failure palliative care 14Chapter
4 Data collection4.1 MethodData collection and data entry were
undertaken by HFSNS staff who were provided with a period
ofinduction and ongoing support by the project nurse. Unfortunately
duplication was required onto boththe existing heart failure
database (ATHENA) and the project database and it is important to
acknowledgethat it was difficult for the HFSNs to do this within
the time constraints of their workload. We are gratefulthat staff
were so supportive in facilitating such additional data collection
where possible.4.2 Data sourcesInterim analysis highlighted that
there were gaps in the level of information available across some
ofthe participating sites. To both augment and validate the data
collected within the ATHENA and projectdatabases, we accessed
additional information from a variety of sources:l PMS Systems: All
three independent patient management systems in use across the
acute sector ofNHS GG&C which included biochemistry,
haematology and admissions modulesl GP Out of Hours system: Access
was available to access the system used across NHS GG&C to
monitorpatient contact outside the regular working pattern of the
HFSNSl SMR01 Data: Scottish Morbidity Record for Inpatient
Admissions. This was requested from theDepartment of Information
Services at Health Board in order to review and validate admission
causeand length of stay.4.3 Development of the heart failure
palliative care databaseIn response to the limited data profile on
the existing heart failure database currently used across all
heartfailure sites in NHS GG&C, an additional project specific
palliative care database was designed by theproject nurse and
clinical effectiveness co-ordinator for the duration of the
project. It included the mainclinical sections already recorded on
ATHENA and was enhanced with the facility to also record:l Patient
and carer concernsl An extensive symptom assessment forml
Professional services logl Bereavement summaryThe database
specification is available as Appendix 8.4.4 Data analysis
methodologyData was uplifted from each participating site by the
clinical effectiveness co-ordinator. It was centrallymerged, then
analysed independently of both the HFSNS and the project nurses
using statistical software(SPSS v16.0). The raw data collected is
shown through a series of tables (Appendix 2).Heart failure
palliative care 15Chapter 5 Results - Quantitative5.1
Identification of group 3 patientsl The data collection period for
the project was for 12 months from 1 August 2008 to 31 July 2009.l
Total number of HFSNS caseload during this period (Service caseload
SC) = 1400.l Total number of patient deaths during this time period
from within the HFSNS (SD) = 278 (20% of SC).l Total number of
patients identified by the project (Patients identified PI) =126
(9% of SC).l Of the 126 patients identified by the project (PI),
number of deaths (PD) = 57 (45% of PI and 20%of SD).l Following a
review of all the HFSNS deaths (over the same period), a further 54
deceased patients werefound to have met the project inclusion
criteria but were missed by the HFSNs (Potential miss PM).Had these
patients been identified, the total number of potential patients
identified by the project(PPI) would have been (PPI) =(PM) + (PI)
or 180 patients.*l Of the 180 potential patients identified by the
project (PPI), a total of 111 died (PPID) = (PD) + (PM).This is 62%
of (PPI).l There were a remaining 167 patients who died who could
not have been identified by the projectbecause they died suddenly,
were still titrating at the time of death or died from other
causes,including malignancy or stroke.* As these patients were not
identified by the project, they are not included in any of the
project data analysis. Additionally, there may also have beensome
further patients who would have met the criteria but who did not
die during the time period. We know that this percentage is an
estimate of the real percentage given some may have died outside of
the time period and some who mayhave met criteria (but who were not
picked up) have not been picked up on review because they did not
die during the period.Deaths out with project scopeH1 H2 H3 H4 H5
H6 H7454035302520151050No of patientsSuddenOtherTitratingPotential
missHospital siteHeart failure palliative care 16It is difficult to
determine the number of still-active patients who would potentially
have met the group 3criteria without reviewing each patient record
individually, and for this reason, it is important to highlightthat
the number of group 3 patients could be significantly higher.5.2
Demographics5.2.1 SexMany more men (74%) than women had their care
defined within the supportive and palliative careproject. This
varies from observed recruitment to the HFSNS where the split has
been consistent at around60% male and 40% female (Appendix 2, Table
1).5.2.2 AgeThe age range is 18 years to 100 years with a median of
75 years which is similar to the annual age rangereported by the
HFSNS (Appendix 2, Table 2).5.2.3 DeprivationWithin the project,
40% of patients lived within areas of high deprivation in contrast
to the expected levelsof around 58% seen in the HFSNS annual
reports. However, it should be noted that these observations
arehistorical and are prior to the inclusion of Clyde sites
(Appendix 2, Table 3). This would support that overalldeprivation
within these Community Health & Care Partnerships is lower than
those in Greater Glasgowas highlighted by data from the Scottish
Neighbourhood Statistics Office (www.sns.gov.uk). PreviousHFSNS
reports have traditionally used the Carstairs Index (Deprivation
and Health in Scotland Carstairs V,Morris R; Health Bull
(Edinb.1990 Jul; 48 (4):162-75) to analyse patient demography and
it was also used forthe purpose of this report in order to
establish a robust comparison, rather than use data from the
mostrecently published Scottish Index of Multiple Deprivation
(2009).5.2.4 EthnicityThis has not been previously recorded within
the ATHENA database so there is no baseline data availableto
measure against, but within the project only 3% were of non-White
origin, all of whom were of Asiandescent (Appendix 2, Table
4).5.2.5 Social statusOf the 126 patients identified, only 33 (26%)
lived alone (Appendix 2, Table 5). Of the patients who did notlive
alone, 74% of them relied on their spouse to provide their care.
The remainder were supported bychildren, siblings or other
(Appendix 2, Table 6).5.3 Symptom burdenShortness of breath,
symptom and pain control have been highlighted as patients main
concerns at endof life 18,21 with the fear of death often being
associated with the onset of these symptoms.5,18,21The Edmonton
symptom assessment tool20 was used to create consistency with
symptom recognitionand scoring of patients within the project.
However, it must be recognised that the use of any tool isdependent
on the knowledge and skill of the healthcare professional, and it
can be extremely subjectiveChapter 5 Results - QuantitativeHeart
failure palliative care 17Admission episodes/Bed days for deceased
patientsfrom the patients perspective. Furthermore, throughout the
project, although this was recommendedas a desirable measure of the
patients symptom burden, only 82 patients (65%) had their
symptomsrecorded. From those patients who did have an Edmonton
Assessment carried out, dyspnoea, fatigue,weakness, insomnia,
cough, anorexia, PND and generalised pain excluding cardiac pain
were the mainsymptoms reported. Other symptoms routinely reported
are highlighted in Appendix 2, Table 11.Sadly, these findings
highlight the significant symptom burden often tolerated by this
patient group asreflected in the wider literature.1,5,18 Such
findings may support the use of a recognised tool to
promoteimproved symptom assessment and management in everyday
clinical practice. 26Baseline aetiology of heart failure was
largely ischaemic (75%) and the majority had severe LV
impairment(38%), 66% were NHYA III and all had a range of
co-morbidity, the most prevalent of which was renalimpairment (48%)
(Appendix 2, Tables 7-10).5.3.1 NYHA classificationThe measurement
of NYHA classification was recorded at each consultation for all
patients. Thisclassification selected for the purpose of the
project was the one which has been the most consistent overtime. As
expected, 66% of patients were recorded as being NYHA III. Of the
four patients whose NYHAclass was unrecorded on the Athena dataset,
information regarding their classification was captured fromthe
HFSN assessment documentation that was communicated to the GP in
the form of a letter followingeither a home visit or clinic
consultation. From this it was possible to establish that these
patients werealso either NYHA class III or IV (Appendix 2, Table
9).5.3.2 Co-morbidityAs heart failure seldom comes in isolation,
many of the project patients had one or more co-morbiddiseases such
as angina, asthma, chronic obstructive pulmonary disease, diabetes
and renal impairmentwhich was noted to be the most common (48%)
amongst this group (Appendix 2, Table 10).H1 H2 H3 H4 H5 H6
H770060050040030020010006050403020100Total bed daysTotal admission
episodesHospital siteTotal bed daysTotal admission episodesChapter
5 Results - QuantitativeHeart failure palliative care 185.4
Hospital utilisationHospital admissions were reviewed on two
levels; patients who were still alive at the end of the
datacollection period and those who died during this period. For
the 57 deceased patients, a full review of allhospitalisations in
the year prior to their death was completed.Length of stay data for
patients who were still alive was collected upto and including 31
July 2009.However, as some of them were still inpatients at this
date, it was not possible to capture the accuratenumber of hospital
bed days that each patient incurred beyond this date. For this
reason, such datashould be regarded as being taken from a snapshot
in time and the number of bed days incurred couldbe greater for
those reasons cited above.5.4.1 Hospital admission ratesSixty-nine
live patients generated 129 admissions ranging from one to eight
(median=2).Fifty-seven deceased patients generated 231 admissions
ranging from one to 10 (median=3) (Appendix 2,Tables 12, 13).5.4.2
Cause of admissionDuring the period of data collection, IT systems
across each of the eight participating sites were intransition and
three independent applications were operational at the time of
analysis. In the absence ofcomparative information, the use of
SMR01 data was identified as a means of validating admission
cause.The parameters interrogated ensured that heart failure was
identified as being a necessary requirementwithin the first four
diagnostic categories and these events were then mapped to patients
identifiedwithin the project database. Enhanced grouping of ICD-10
classification codes identified the following:l Cardiac cause 68%
(including MI, chest pain, angina, AF and HF)l Respiratory cause
12% (including COPD, pleural disease and pneumonia)l Renal failure
cause 4%l Malignant-related cause 2% (including both primary and
metastatic disease)l All other causes 14%Despite being indicative
of underlying heart failure, conditions such as oedema and dyspnoea
weregrouped to Other as there was no way of identifying whether or
not these specific episodes weredirectly related to the patients
pre-existing condition.5.4.3 Hospital length of staySixty-nine live
patients experienced a total of 1788 days in hospital ranging from
one to 255 days(median=23). Fifty-seven deceased patients generated
a total of 2870 days in hospital, ranging from oneto 266 days
(median=43) (Appendix 2, Tables 12, 13).Chapter 5 Results -
QuantitativeHeart failure palliative care 195.5 Out of hours
activityIn an attempt to measure the levels of contact that these
patients meeting group 3 criteria generatedoutside of the HFSNS,
access to the ADASTRA database held by NHS Greater Glasgow &
Clydes GP Outof Hours Service (OOH) enabled review of all deceased
patients in order to give as complete a picture aspossible on the
contact levels with OOH for the year prior to death.Thirty-eight of
the 57 deceased patients identified within the project (67%) had at
least one contact withOOH ranging from one to 10 (median=2) and 81
of these contacts (89%) took place out with the regularhours of the
HFSNS. (Appendix 2, Table 14)l The majority of OOH contacts
resulted in a home visit (51%)l A total of 29 admissions were made
following OOH contact (32% of all outcomes)l Six patients had their
deaths confirmed by OOH staff at a home visit (11%)There were a
vast range of diagnoses recorded but the main categories were:l
Respiratory 32%l Chest pain 15%l Medication issues 9%Furthermore,
of the additional 54 potential group 3 patients, 31 of them (57%)
generated a total of 69contacts with the OOH service. As these
cases were unconfirmed within the project, review of their
OOHactivity was not carried out in any more detail.5.6 Heart
failure specialist nurse contactThe main HFSNS contacts such as
home visits and nurse-led clinic appointments are
well-documentedwithin ATHENA. However many of the softer contacts
such as telephone calls to other healthcareprofessionals etc. are
not routinely recorded and are therefore much less accurate.
(Appendix 2, Tables 15a,15b)l A total of 885 home visits were made
to 85 patients during the period of data collection, ranging
fromone to 30 (median=7).l A total of 337 nurse-led clinic
appointments were carried out for 57 patients, ranging from one to
30(median=3).l A total of 211 contacts with palliative care
involvement were made for 38 patients, ranging from oneto 21
(median=5).Chapter 5 Results - QuantitativeHeart failure palliative
care 205.7 Contacts with other professional servicesThe majority of
heart failure patients will require increased support from a range
of other healthcareprofessionals as their condition continues to
deteriorate. Findings from the project show that such
multidisciplinaryactivity is not well recorded at present. From the
limited data available, we were able toidentify that the three most
common areas of additional input came from:l District nurses 25%l
Social work 24%l Occupational therapists 17%It is a concern to
acknowledge that only a quarter of the patients identified by the
project were likely tohave received additional support to enhance
living with a disease that is already characterised by
severesymptom burden and reduced functional decline.5.8
DeathsDuring the data collection period a total of 278 deaths
occurred within the HFSNS from a total activecaseload of 1400
patients (20%), 57 of whom were identified within the project (45%
of the observedcohort) (Appendix 2, Table 16).As previously stated,
the project nurse and the clinical effectiveness co-ordinator
reviewed all deathsthat occurred during the project period and
using group 3 criteria found a further potential 54 patientswho
could have been included in the project numbers. If we add these
patient deaths to the 57 deathsthat were identified within the
project, this gives a total of 111 group 3 deaths, or 40% of the
total servicedeaths. Additionally, if we add the 54 patients to the
total of 126 group 3 patients that were included inthe project this
gives us 180-111 deaths = 62% of the group 3 patients died during
the project term.The remaining 167 deaths in the HFSNS were
patients who were excluded from the project for thefollowing
reasons:l Patients still being optimised with evidence-based HF
therapy (42%)l Sudden death (19%)l Death occurred for other reasons
not associated with HF (14%)5.8.1 Preferred place of deathFor those
who died during the period of data collection, 11 (19%) had no
preferred place of deathrecorded (Appendix 2, Table 17).
Anecdotally, this figure is comparable with other specialities and
for thisreason has been highlighted as a priority by National
Education for Scotland and The Living & Dying WellAction Plan
(2009).5.8.2 Actual place of deathFor those patients who did have a
preferred place of death recorded, 18 of them (39%) passed away in
theplace of their choice (Appendix 2, Table 18).Chapter 5 Results -
QuantitativeHeart failure palliative care 21Chapter 6 Results
Qualitative6.1 Carers understanding and concernsAlthough there is a
dearth of supporting documentation around carers concerns, the
followinginformation was captured during patient and carer
consultations. These consultations took place in avariety of clinic
and home care settings and were carried out in a timely and
sensitive manner. The keythemes highlighted are further supported
throughout the wider literature.21,23l Carer understanding of
prognosis and disease progression varied from having a poor
understandingto fully aware of condition and decline.l Carer
concerns centred on their ability to cope day to day and being able
to do the right thing for theirloved one. Others felt unhappy about
their loved one knowing the full extent of their
deterioratingcondition.l Challenging issues included their ability
to cope and sustainability of coping mechanisms particularlywithin
complex domestic circumstances, such as drugs and alcohol (Appendix
3).6.2 Patients understanding and concernsThe following key themes
have been captured in relation to patients understanding of their
illness andchanging condition.Patient understanding of prognosis
and disease progression varied from poor understanding (11%)
tobeing fully aware of the potential decline associated with their
heart failure condition (21%) (Appendix 4).Patients concerns in
relation to their condition changing centred on reduced function
and mobility, lossof independence, relationships and appetite.
Increased symptom burden included dyspnoea, fatigue,weakness and
oedema. Other concerns included loss of confidence, increasing
dependence on othersfor support, worry about the effect their
dependency would have on their caregivers and becominghousebound or
requiring hospital admission.Challenging issues ranged from; being
the main carer for their spouse, managing stairs, reduced
function,ability to cope with everyday activities, acceptance of
failing condition and associated symptom burdenparticularly
increasing dyspnoea, insomnia and oedema. Equally challenging was
accepting additionalsupport and the loss of spontaneity such as
going on holiday etc (Appendix 4). These themes are endorsedin the
wider literature.18,216.3 Joint workingOne of the key elements of
this project has been the opportunity for the HFSNS to work jointly
with theproject palliative care clinical nurse specialist and also
wider collaborative working with other health, socialand palliative
care services across different care settings within NHS GG&C.
Using a variety of evaluationmethods such as staff questionnaires,
reflective narratives and professional accounts (Appendix 5),
thefollowing recurring themes have emerged as potential key areas
that require additional and ongoingsupport:Heart failure palliative
care 22l Advanced communicationl Different ethos of carel Time and
competing prioritiesl Education and training gapsl Informal
transfer of knowledge and skillsThe palliative care clinical nurse
specialist has been seconded (0.3wte) for the last 12 months of
theproject term, and although uptake of joint patient visits was
initially slow, this resource has now provedinvaluable for
supporting the HFSNS and for the informal transfer of knowledge and
skills between twospecialities (Appendix 6).Chapter 6 Results
QualitativeHeart failure palliative care 23Chapter 7 Discussion7.1
Main findings1. Can a supportive palliative care approach to care
be encompassedwithin the existing HFSNs role?Although some HFSNs
across NHS GG&C demonstrated that it is achievable to integrate
a supportiveand palliative care approach effectively into the
existing HFSN role, others have found this to be moredifficult. The
supplementary information that was required for the database
focused more on the personsexperience of living with the disease
and less on the actual disease itself, resulting in longer patient
andcarer consultations. This naturally caused some concerns amongst
the HFSN team particularly in relationto the additional time
required for the patient and a carer consultation, that very often
on averagewas one to 1.5 hours as identified in a time log
(Appendix 5). This is compared to existing heart failurepatient
clinic consultations of 15 minutes and approximately 20 to 30
minutes for a regular home visitconsultation. The ensuing
communication with wider health and social care professionals is
also initiallyvery time-consuming (Appendix 5).In addition, as
highlighted in the staff questionnaire and the learning needs
assessment focus groupcarried out by the NHS GG&C lead nurse
for non-malignant disease and the palliative care nurseconsultant
(Appendix 5), specific training and educational needs were
identified by the HFSNS.One of the key elements of this project has
been the opportunity for the HFSNS to work jointly with theproject
palliative care clinical nurse specialist and also wider
collaborative working with other health,social and palliative care
services across different care settings within NHS GG&C. If the
HFSNS is toencompass a supportive palliative care approach into the
existing role, greater collaborative workingwith key professionals
across all care settings needs to be encouraged. Although this may
initially be timeconsuming and impact on the HFSNs time, it should
in the longer term, increase both confidence andefficiency of the
HFSNs interactions with patients as they improve their skills and
experience.2. Can patients be identified earlier despite an
uncertain andunpredictable disease trajectory?Prior to this
project, patients were often only identified as nearing the end of
life when they were in thelast few days or hours of life. The
project has demonstrated that using the specific inclusion
criterion, itis possible to identify a significant percentage of
patients who are months, rather than days away fromdeath. What it
also highlights however, is that a significant number of patients
who did not meet theinclusion criteria died outside the project
without their supportive and palliative care needs being
met.Furthermore, although a small number of patients did not
require hospitalisation in the 12 monthsprior to their death, a
significant number of patients did. It is crucial, therefore, that
hospital admission/readmission is considered, along with an
increased need for home visits as a prognostic
indicatorparticularly if the patients are being managed by a HFSN.
More work to develop more robust andaccurate inclusion criteria and
improved HFSN skills in patient identification would be
welcome.Heart failure palliative care 243. Are the supportive
palliative care needs of patients and their caregivers being met
within the existing HFSNS?The project clearly highlights that
unfortunately many patients within the HFSNS continue to live and
diewith their supportive and palliative care needs being unmet.
Accurate identification of patients who areapproaching the end of
life remains challenging, and further work on biometric and
clinician-assessedprognostic indicators that would help the HFSNs
accurately identify the appropriate patients would bewelcome.The
holistic approach that encompasses physical, social, spiritual and
psychological aspects of care islargely absent from the current
HFSNs assessment. For reasons already cited above, more emphasisis
placed on the heart failure symptoms and pharmacological regimes.
It may be, that adapting theassessment process to include a more
holistic assessment would improve earlier identification of
patientsand also help increase the skills and confidence of the
HFSNs in engaging patients in discussions abouttheir priorities for
care.Providing a more holistic approach to care will inevitably
take more time and this poses particularchallenges for an already
heavily-committed service. The HFSNs currently work within
relativelyshort consultation times (15-20 mins) and it is difficult
to engage in the often lengthy and complexdiscussions about care
toward the end of life without an increase in visit length. It may
be, though,that by incorporating some of the principles of a
supportive palliative care approach into the standardassessment,
the additional time requirement will be distributed more evenly
over the patients time in theHFSNS and avoid the significant peaks
in time commitment that were required during this project.Project
achievementsData collection: The data collection process that has
taken place over the seven HFSNS sites has, ingeneral, been
successful and it is hoped that key areas highlighted will be used
to underpin enhancedclinical practice and the undertaking of future
research proposals.Joint working: One of the key elements of this
project has been the opportunity for the HFSNS to workjointly with
the project palliative care clinical nurse specialist and also
wider collaborative working withother health, social and palliative
care services across different care settings within NHS GG&C.
Thisinformal transfer of knowledge and skills has increased
awareness of the extensive needs of people livingwith heart failure
and has proved invaluable to a number of different service
providers and in particularthe HFSNS. Further evaluation on the key
aspects of joint working will follow in a separate report.The
framework to support the HFSNS to identify high risk patients
meeting the criteria of group 3 is nowbeing used routinely as a
trigger to have more formal discussions with the key clinician. The
outcomesof these discussions are used to inform the future goals of
care in relation to either further cardiologicaltreatment or
continuation of a supportive/palliative ethos of care that
realistically incorporates thepriorities of care for the people
living with advancing disease. 19Anticipatory care planning (ACP)
is a key element of the Living and Dying Well Action Plan
(2008).TheACP process involves ongoing discussion between the
patient and their care providers and focuses ontheir future care
preferences. This sounds ideal in theory, however from the
experience of the project thishas been very difficult to facilitate
in clinical practice without additional allocation of
time/resources. Todate, 17 ACPs have been implemented across NHS
GG&C with varying degrees of success. Evaluation ofthe ACPs and
their effectiveness is not within the remit of this project,
however the following observationshave been noted. Hospital
admission could not always be avoided; but knowledge that the
patient hadadvancing disease and did not wish to be hospitalised
meant that this was only ever considered as a lastChapter 7
DiscussionHeart failure palliative care 25resort. There is
potential to reduce the number of hospital bed days with the
support of an ACP and thisarea in itself merits more robust
exploration. Enhanced communication across different care settings
andin particular with GPs and the OOH service was achieved. And
finally, there was a general sense of relief/peace from families
who felt informed and knew what to reasonably expect from their
loved one butmore importantly the health and social care
professionals caring for them.Supportive palliative care clinic: In
response to many of the difficulties cited throughout this report,
itwas agreed that a six month supportive palliative care clinic
pilot would be established at one of the HFSNsites. The purpose of
this clinic was to review the high risk patients meeting group 3
criteria identifiedby the HFSN. Following a comprehensive
assessment by the cardiologist and HFPCSN the patient andtheir
caregivers needs and preferences for care are then facilitated by
the HFSN in collaboration withother multi-professionals. This pilot
was two-fold primarily to provide improved care for persons
livingwith advancing disease and secondly to provide an opportunity
for the HFSNs to use as an educationalresource to increase their
knowledge and communication skills by observing and participating
in adifferent ethos of care.Multi-professional working: A second
pilot is operating at one of the other HFSNS sites and includesa
weekly multi-professional team meeting, led by the lead
cardiologist and palliative care consultant.The HFSNs identify high
risk patients meeting group 3 criteria who are to be discussed at
this meetingand their preferences of care are identified and
facilitated accordingly. The HFSN remains the key workerthroughout.
Patients and their caregivers who have agreed that the emphasis of
care should be morepalliative, are given the opportunity to attend
a six week programme offered by the local hospice.This programme
includes; discussions around changing condition, symptom
management, social,psychological and spiritual care needs, and a
representative from all of these specialities attends at leastone
session. Additional follow-up is tailored to suit individual
patient and caregivers needs and mayinclude alternative therapies
to improve both patient and caregivers quality of life. This
multi-professionalworking encourages an informal transfer of
knowledge and skills.Education and training has been highlighted as
a key area for development throughout this projectand in particular
the need for further training in communication. Following a
successful bid application(Appendix 6), 10,000 was awarded to the
NHS GG&C Cardiology Directorate to enable 30
healthcareprofessionals to attend a two day advanced communication
course and a further 10 healthcareprofessionals to attend a dignity
and respect training day. Evaluation following attendance at these
dayswill inform future training events.An educational module has
been specifically developed at Glasgow Caledonian University by the
projectnurse in partnership with cardiology and palliative care
professionals from across NHS GG&C to support allprofessionals
with the management of persons living with advancing heart failure
disease. The module isavailable at both degree and Masters level
study and is delivered twice per year.In collaboration with all the
hospices across NHS GG&C it has been agreed that the HFSNS will
be invitedto attend and participate in the regular study events
that are currently offered to the palliative careprofessionals. It
is hoped that this will sustain knowledge acquisition and long term
collaborative working.The project nurse has devoted much resource
to networking, learning and education across Glasgow,Scotland and
the UK. Although this has taken many forms it has mainly centred on
the delivery ofpresentations and discussion forums totalling
approximately 145 over the three year project term.Chapter 7
DiscussionHeart failure palliative care 267.2 ImplicationsKey
recommendations for practiceThe NHS Quality Improvement Scotland
Clinical Standards for Heart Disease waslaunched April
2010.Standard Statement 18Patients with heart disease who remain
symptomatic despite optimal treatment have access to supportiveand
palliative care according to their needs.The essential criteria
highlights that patients should be identified, assessed and an
individualmanagement plan covering all aspects of care, including
advanced planning around device deactivation,should be created,
documented and communicated to all relevant services including the
OOH. This planis to be reviewed quarterly.For this standard to be
met within the HFSNS, the following key recommendations need to be
consideredand implemented at each of the HFSNS sites.Recommendation
1: Holistic assessment using evidence based assessment tools that
encompass social,physical, spiritual and psychological aspects of
care should routinely be employed and documentedfor each patient
within the HFSNS. The project highlighted that it is conceivable to
identify patientswho could benefit from a heart failure palliative
care approach using the inclusion criteria. It equallydemonstrated
that patients who did not meet the inclusion criteria, and died
whilst still being optimised,could also have benefited from this
approach to care.Recommendation 2: Proactive identification of
group 3 patients who meet the project criteria within thedefined
heart failure caseload should continue and the inclusion of
significant conversations to identifypriorities of care should
become integral to the HFSN role.Recommendation 3: The HFSN should
be the key worker/co-ordinator for high risk patients meetinggroup
3 criteria particularly as there will be a greater need for
multi-professional working and coordinationof care as the people
living with heart failure condition and circumstances
change.Recommendation 4: Information gathering should include
disease specific details and supplementaryinformation around the
holistic assessment, significant conversation, priorities of care
and personspecific information in relation to patient and carer
concerns. These additional fields are already beingconsidered for
inclusion in the developing heart failure database. This change
will support the requireddocumentation and communication that is
essential for the creation of anticipatory care
planning.Recommendation 5: Continued multi-professional working
across all care settings should be supportedand facilitated
wherever possible for all patients within the HFSNS.Recommendation
6: Although patients meeting group 3 criteria may be considered at
higher risk ofdying with unmet needs, consideration must also be
given to all heart failure patients who are potentiallyat risk of
dying whilst still being optimised on evidence based heart failure
therapy, or who may diesuddenly. For this reason, all heart failure
patients and their care givers deserve a patient centred approachto
care that encompasses assessment of their needs and is responsive
to condition change and/or socialcircumstances as they
develop.Recommendation 7: An ongoing system of education and
training to support the HFSNS and palliativecare professionals
across care settings needs to continue to ensure that the enhanced
knowledge,acquisition of skills and collaborative working that is
already taking place is regularly encompassed withinthe HFSNs role.
Further robust research addressing training needs of the HFSNs and
the wider health andsocial care professionals is required.Chapter 7
DiscussionHeart failure palliative care 27Recommendation 8: Systems
that encourage comprehensive assessment and open and
honestdiscussions are required to be implemented. Particularly,
within the acute care settings to ensure thatinappropriate goals of
care and subsequent prolonged hospital admissions as highlighted in
this projectare avoided for this patient group.7.3 Future
directionThis project aimed to determine whether patients with
heart failure requiring supportive and palliativecare could be
identified and their needs met within the current HFSNS resources.
A systematic approachwas developed and implemented to identify
patients and meet their care needs. The HFSNs introducedthe lessons
and processes from palliative care into their practice. Although
extending palliative careto non-malignant conditions features
significantly on the political health and social care agenda,
theevidence as to how we deliver this change in clinical practice
is still in its early stages. However, there hasbeen a very
positive shift in attitude across all care settings over the last
12 months. It is for this reason thatoptimism and enthusiasm
prevail.The findings within this report support this change and
although the philosophy of cure still pervadeswithin heart failure
generally. It is apparent that advances are being made, albeit
slowly, to understandand appreciate that a different ethos of care
which recognises the persons experience of living withadvancing
disease, is as important as the measurable clinical outcomes
themselves. Time will always beour enemy and additional finance and
resources is not always the answer. If we can fully embrace
theconcept of holistic assessment and multi-professional working,
then we can begin to focus on a personcentred approach to care
instead of the disease specific approach currently utilised.This
project provides the foundations for further quantitative and
qualitative research in this area. Thesmall sample size recruited
is likely to be an underestimate of the actual number of patients
who couldpotentially fulfil the inclusion criteria. This number,
however, will not become evident until healthcareprofessionals who
are currently working in heart failure develop the confidence,
skills and knowledge toimplement an ethos of care that encompasses
the wider impact that heart failure has on the people livingwith
the condition. Further research on prognostic indicators is also
required.Chapter 7 DiscussionHeart failure palliative care
28Appendix 1 FrameworkAppendix 1aHFSNS Caseload Patient
Classification ToolAll patients meeting the high risk group 3
criteria were identified by the HFSNS using the following:l
Regarded by the heart failure specialist nurse service (HFSNS) to
be on optimal/target doses ofevidence based heart failure therapy
as per the local heart failure medical therapy guidelines
andremained NYHA III/IV.l Had progressive symptoms that - were
distressing and/or debilitating.l Required increased monitoring by
the HFSNS e.g. home visits/clinic contact and/or a
hospitaladmission.l Required frequent medication changes in
response to difficult/resistant symptoms and/or change intheir
condition.Gro up 2Symptomatic duringoptimisation processSymptom
palliationOptimal/target doses ofheart failure therapyGro up
1OptimisedAsymptomaticDischargedGro up 3OptimisedProgressively
symptomaticComprehensive assessmentAsymptomatic SymptomaticHeart
failure palliative care 29Appendix 1bPatient is on optimal/target
dose of heart failure therapyComprehensive assessment, discussion
and documentationClarity on treatment and future goals of
careContinue with a supportivepalliative care approachencompassing
end of lifecare planning.Continue with a supportivepalliative care
approachencompassing additionalinvestigations and treatmentto
optimise cardiologicalmanagement.YesYesYesYesNYHA
III/IVSymptomaticIncreased monitoring/hospital admissionRequiring
regular medication adjustment in response
todebilitating/distressing symptomsGroup 3 PatientAppendix 1
FrameworkHeart failure palliative care 30Appendix 1cComprehensive
assessment discussion triggersStage 1Patient Treatment Status
Assessment Yes (4) No (4) DatePatient OptimisedNYHA Class
III/IVUnstable for > 3 monthsECG: QRS Prolongation (> 120ms?
> 150ms)HbFurther Investigation/Intervention IndicatedPrognosis
PoorPalliative Care and Comfort Measures OnlyStage 2Advanced
Planning Yes (4) No (4) DatePatient Treatment Status
Clarified/DocumentedEffective CPR: Is it likely to be
successfulDNAR Status Clarified/DocumentedDevice InsituType of
Device: ICD/CRT/CRT-DDevice Deactivation PlannedDevice
DeactivatedReason for device not being deactivatedStage 3Priorities
of Care Yes (4) No (4) DatePreferred Place of CareSymptom
Management ConsiderationsMedication ReviewSocial Care
Review(Care/Benefits DS 1500 etc)Carer ReviewPatient and Carer
Aware of DNAR StatusGold Standards Framework RegisterFast Track
Summary for (A&E) Dept/OOhrsLiverpool Care Pathway (as
appropriately indicated)This comprehensive discussion trigger
document can be used to support professionals to
generateanticipatory care plans.Appendix 1 FrameworkHeart failure
palliative care 31Appendix 1dAnticipatory management plan
templateRecent clinical summarySince October 2008, Mr Bloggs has
had three separate admissions to hospital with symptoms
ofdeteriorating heart failure. Sadly since these admissions his
general condition is relatively poor and hecontinues to have
refractory symptoms of dyspnoea and peripheral oedema affecting
both legs to midcalf level. In response to this progressive
deterioration, the following care priorities have been
identifiedand agreed by all key clinicians involved in Mr Bloggs
management.Cardiological Assessment - it has been agreed that Mr
Bloggs is on optimal cardiac therapy and thereare no indications
for further therapeutic interventions to improve
outcomes.Resuscitation Status - following discussion it has been
agreed cardio-pulmonary resuscitation would notbe effective and for
this reason should not be initiated. Following careful and
sensitive discussion Mr andMrs Bloggs are fully aware of this
decision.Priorities of Care - Preferred place of careMr Bloggs has
expressed a wish that every effo rt should be made to manage and
support his care athome however in the event that his condition
becomes too difficult to manage at home he has statedthat he would
prefer a short hospital admission. Hospice directed care has been
explored and declined onthis occasion.Symptom Considerations: In
the event of Mr Bloggs developing symptoms of dyspnoea please
considerthe following treatment strategiesAccident Emergency Fast
TrackIf Mr Bloggs requires admission to the hospital a fast track
alert has been placed in accident emergencyto avoid unnecessary
waiting time and inappropriate investigations. This fast track
process should ensurerapid assessment, appropriate treatment and
transfer to a suitable area within the hospital. The aim of
thisshould always be to ensure a short hospital stay.Emergency
Contact Telephone Numbers:District Nursing TeamHospiceHFSNSOut of
Hours Emergency Care ServiceThe above anticipatory management plan
has been agreed with all key clinicians listed below:Dr xxxxx
(Consultant Cardiologist)Dr xxxxx (General Practitioner)Sr xxxxx
(Heart Failure Specialist Nurse)A copy of this anticipatory
management plan has been given to all of the above including
MrBloggs, Out Of Hours Emergency Care Services and the District
Nursing Service.Appendix 1 FrameworkHeart failure palliative care
32Appendix 1eFast Track Summary Report For Out Of Hours - End of
Life Heart FailureShould this patient present to (A & E) with
end stage heart failure symptoms please assess and
manageappropriately and ensure that home discharge is always
considered in the first instance to avoidinappropriate hospital
admission.Decision Status: Palliative Care and Comfort Measures
OnlyDecision Rationale: End stage heart failure with poor
prognosisDate of Decision:Professionals Responsible for
Decision:Professional DetailsContact Details:GP or HFLN or Out of
Hrs (name & contact number)Consultant CardiologistCare of
Elderly ConsultantDistrict Nursing TeamPalliative Care TeamPrimary
Treatment PlanContact HF CNS - If office hours available via
mobilePatient not for invasive or investigative measuresEnd of life
discussion has taken place with patient and familyFull social
support is in place for this patientIf there are clinical signs of
fluid retention administer:Consider IV frusemideConsider immediate
release morphine 4 hourlyIncrease dose depending on response and
side effectsIf unable to take drugs orally, use SC route or IV
route as indicatedOxygen therapy if indicatedIf there are no
obvious signs of fluid retention but patient is dyspnoeic and
anxious consider:Opiate and diuretic as aboveLorazepam 0.5 mg
sublingually can help in acute situationDiazepam 2 mg orally and
titrate depending on responseAppendix 1 FrameworkHeart failure
palliative care 33Appendix 2 TablesTable 1Sex
H1n=35H2n=13H3n=25H4n=10H5n=16H6n=17H7n=10Totaln=126Female 5 3 8 4
4 8 1 33 (26%)Male 30 10 17 6 12 9 9 93 (74%)Table 2Age
H1n=35H2n=13H3n=25H4n=10H5n=16H6n=17H7n=10Totaln=12650 - 59 3 0 0 0
3 0 1 7 (6%)60 - 69 9 1 5 2 1 3 1 22 (17%)70 - 79 18 4 13 6 9 6 5
61 (48%)80 - 89 4 7 6 0 3 6 3 29 (23%)90 and over 1 0 0 1 0 2 0 4
(3%)Under 50 0 1 1 1 0 0 0 3 (2%)Table 3DepCat
H1n=35H2n=13H3n=25H4n=10H5n=16H6n=17H7n=10Totaln=126High 24 3 5 5 5
5 3 50 (40%)Low 0 1 3 1 7 4 5 21 (17%)Medium 11 9 17 4 4 8 2 55
(43%)Table 4Ethnicity
H1n=35H2n=13H3n=25H4n=10H5n=16H6n=17H7n=10Totaln=126White 34 13 25
9 16 15 10 122 (97%)Asian 1 - - 1 - 2 - 4 (3%)Table 5Lives alone
H1n=35H2n=13H3n=25H4n=10H5n=16H6n=17H7n=10Totaln=126No 30 8 19 6 11
13 6 93 (74%)Yes 5 5 6 4 5 4 4 33 (26%)Heart failure palliative
care 34Table 6Main carer
H1n=35H2n=13H3n=25H4n=10H5n=16H6n=17H7n=10Totaln=126Child 2 4 4 4 1
5 0 20 (16%)Friend 0 2 0 1 0 0 2 5 (4%)Not recorded 10 0 5 0 3 2 0
20 (16%)Other 0 0 2 1 1 2 3 9 (7%)Sibling 0 0 0 1 1 0 0 2
(2%)Spouse 23 6 14 3 10 8 5 69 (55%)Stepfather 0 1 0 0 0 0 0 1
(