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 (