Foreword

Heart failure is a progressive and life limiting condition affecting almost a million people in the UK at any one time. Early identification and honest communication enable parallel planning and support for the individual and those important to them. Active treatment for heart failure alongside symptom management allows optimisation of their quality of life.

Inequity must be addressed. There remains wide variation in access to palliative and end of life care in people with heart failure compared to those with cancer. Even within the heart failure community, those with heart failure with preserved ejection fraction are less likely to access palliative and end of life care than those with reduced ejection fraction.

The Health and Care Act 2022 sets out the legal requirement for Integrated Care Boards to commission health services that meet their population needs. This part of the Act includes an explicit reference to their responsibility for ensuring the provision of palliative care services.

This document sets out what good palliative and end of life care looks like in the context of people with heart failure. It includes the core components of cardiac supportive palliative care and aligns this with the Ambitions for Palliative and End of Life Care. It also sets out the requisites for achieving all this and proposes metrics that could assist in driving improvements. As such, we recommend this as a guide to support commissioners and clinicians in their efforts to improve the design and provision of palliative and end of life care services for their population.

Prof. Bee Wee, National Clinical Director for Palliative and End of Life Care, NHS England (2013-2023)
Prof. Nick Linker, National Clinical Director for Heart Disease, NHS England

Comment by Stephen Kirkham, person with lived experience

Cardiomyopathy UK, as a patient-led charity which both campaigns for and supports patients and their families, has been heavily involved with clinical colleagues in initiatives to highlight best practice in the care of cardiomyopathy patients with heart failure. Priorities for resources are debated and decided at regional and local level, and too often our surveys reveal that a postcode lottery exists when it comes to resourcing best practice in heart failure.

This framework, for use by integrated care boards, is an important part of the way ahead, identifying and making the case for palliative care provision in heart failure across England. We endorse it as both important and timely.

In 2015 I discovered I was very close to the end of my life. This was the conclusion of a gradual 10-year decline with dilated cardiomyopathy and severe heart failure. Having a heart transplant in 2015 gave me the pretty rare experience of living through nine months of advanced and then end-stage heart failure with extreme frailty, and which included four blue light admissions to A&E. During this time, I didn’t receive any targeted help to cope emotionally or practically, nor with tough physical symptoms beyond some ineffective fiddling with my diuretics. My quality of life, and that of my wife who was caring for me at home, was wretched.

When I was eventually sent to the heart transplant centre I wasn’t told why, and it was left to them to tell me I was dying. They added that the likelihood was I had weeks to live. While on the urgent list there I proved them right by having a cardiac arrest, and I needed mechanical support for my heart before happily my donor’s heart was offered and I was fortunate to come through the transplant surgery.

Unsurprisingly, I have a keen interest in effective palliative care for all advanced heart failure patients, including those for whom transplant may be possible.

Summary

• The Health and Care Act 2022 places a legal duty on integrated care boards (ICBs) to commission palliative care services for their local population. This includes access to specialist palliative care services.
  • This duty is to ensure the palliative and end of life care needs of people of all ages, with progressive illness or those nearing the end of their lives, plus their loved ones and carers, receive the care and support they need to live and to die well.
• There is unwarranted variation in access to palliative care for people living with heart failure. This is often due to a lack of timely identification of need and holistic assessment, leaving many with unmet needs.
• It is exacerbated by:
  • the unpredictable trajectory of heart failure making prognostication difficult with no clear markers for people entering the last year of life – a major barrier if prognosis-based definitions are used
  • general public and healthcare professional perceptions that palliative care is synonymous with dying.
• It can be improved by:
  • assessing palliative and end of life care needs from diagnosis of heart failure onwards, using personalised care support planning, including advanced care planning
  • including people living with all heart failure regardless of ejection fraction.
• This document will guide ICB commissioners to ensure that people living with heart failure experience improved quality of life and a dignified death in accordance with their wishes:
  • this will reduce demand on health and care systems
  • there is a need to address workforce issues and ensure education and development are supported.

Context

The Health and Care Act 2022 specifically includes palliative care in the services that integrated care boards (ICBs) have a legal duty to commission for their local population.

Heart failure is the final common pathway for almost every cardiovascular disease, irrespective of age. It affects 1% to 2% of the UK population, with prevalence increasing to around 20% in those over 80 years of age. Prevalence and unplanned admissions are also disproportionately higher for those who are socio-economically disadvantaged.

The National Confidential Enquiry into Patient Outcome and Death showed that only 12.5% of people diagnosed with heart failure were known to specialist palliative care services before death. The reviewers considered that 30% of final admissions could have been avoided if patients had received palliative care.

There are no clear markers for people with heart failure entering the last year of life. Compared to people living with cancer, those with heart failure are less likely to have their palliative and end of life care needs identified and managed much before the last few weeks of life, or to be referred to specialist palliative care services in a timely fashion. This is irrespective of whether they are managed in secondary or primary care.

Healthcare professionals’ limited disease-specific knowledge – or reluctance to engage in palliative conversations for fear of removing hope or being seen to give up – hinder care. However, most people with heart failure prefer honesty, want their clinician to raise the topic and are willing to discuss end of life issues even at the time of diagnosis. Definitions of palliative and end of life care are illustrated in Appendix 1.

Progression to advanced heart failure is associated with a high symptom burden, poor quality of life¹⁹, multiple preventable unplanned admissions and a one-year mortality of 39%²⁰Admissions for advanced heart failure are costly and often involve invasive treatments that are futile or even harmful in the last phases of life, which may be several months, weeks or hours. Focus on disease-specific or invasive treatments may overshadow appropriate symptom-based support and palliative and end of life care, adding to distress, unrealistic expectations for patients and carers and inappropriate use of resources.

Lack of an integrated personalised care and support plan developed at an early stage may lead to uncoordinated care delivery, particularly at times of crisis. This can be compounded by geographical variation in service provision or lack of joined-up care across settings.

People living with heart failure with preserved left ventricular ejection fraction (HFpEF) are typically elderly, often with co-existent frailty and multiple comorbidities. They are frequently ineligible for heart failure specialist nurse support, while access to other services – such as long-term condition nurse specialists and community matrons – may be unavailable. These factors contribute to increased hospital admissions in the last year of life while making it even less likely people access palliative care.  

All these experiences of poor care are amplified for those from underserved populations, who are already disproportionately impacted by cardiovascular disease.

Consequently, people with advanced heart failure who receive palliative care have better outcomes including better symptom control, improved quality of life and fewer hospital admissions³⁰. Providing people with heart failure with the right care, at the right time, in the right setting will improve patient and carer experience, reduce harm and increase efficiency.

What does good palliative and end of life care look like for people with heart failure? A needs-based approach

Regardless of setting, early and continuous assessment of need by a collaborative and skilled workforce across both cardiac and specialist level palliative care (SLPC) and primary care is vital if people with heart failure are to receive high quality palliative and end of life care (PEoLC). Tailored heart failure and palliative care should be integrated to address the patient and unpaid carers’ needs from diagnosis, using a needs-based rather than a prognosis-based approach.

Although there may be some flexibility to reconfigure existing heart failure, SLPC and primary care resources within the healthcare system, may need to be prioritised to address gaps with person-centred assessment, advance care planning and cohesive working. The aim is to achieve better outcomes for better value. Evidence suggests this can be achieved using the significant cost savings from reduced ambulance conveyances, emergency department wait times and hospital admissions, and provide a gateway to heart failure or frailty virtual wards.

Considerations for commissioning palliative and end of life care for people with heart failure

Ambitions framework

Ambitions for Palliative and End of Life Care: a national framework for local action 2021-2026 describes what high quality palliative and end of life care looks like and how to implement it locally. As per the Palliative and End of Life Care Statutory Guidance for Integrated Care Boards (ICBs), every ICB should consider the Ambitions Framework when commissioning palliative and end of life care services, particularly how it applies to people with heart failure, as described below.

1. Each person is seen as an individual 

Using a needs-based rather than prognosis-based approach will help people living with heart failure to have their current unmet needs addressed, discuss future preferences and formulate plans. For this to be enacted:

• Prognostic uncertainty from diagnosis onwards should be embraced, openly discussed and be a trigger for important conversations, not a barrier. This approach is endorsed in professional guidelines and emphasises the right care, in the right place and at the right time. An explanation of why palliative care needs should be assessed at diagnosis is outlined in Appendix 2.
• High quality personalised care and support planning, including advance care planning aligned to the universal principles, is essential throughout the uncertain illness trajectory. This will enable cultural influences and responses to disease, death and dying to be respected and consistent with the values and preferences of widely diverse populations.

2. Each person gets fair access to care

People living with heart failure and their unpaid carers should have fair access to palliative and end of life care at a level equal to that of any other person living with a life-limiting illness. To achieve this:

• Following a diagnosis of heart failure, patients should be assessed comprehensively, using validated assessment tools, to identify evolving unmet needs (Appendix 3 highlights examples of palliative needs tools). This will identify any need for onward referral to or discussion with the wider professional team to ensure fair access to partner services.
• Assessment of need should be conducted systematically, and be proactive, not relying only on the patient or carer volunteering concerns.
• Unpaid carers’ needs should be included in the comprehensive assessment. A person living with heart failure could be the main unpaid carer for a family member (e.g., dependent child / partner / sibling) and will therefore also require this assessment.
• ICBs must aggregate data from national and their own local heart failure, palliative care and primary care services to understand and remedy any gaps, particularly for underserved populations disproportionately affected by high levels of cardiovascular disease.

3. Maximising comfort and wellbeing 

Assessment of supportive and palliative care needs at diagnosis may reveal a wide range of need, from those with minimal physical or psychological distress through to others who are severely symptomatic at the time of presentation. A quarter of people admitted to hospital with heart failure have severe or persistent and/or complex palliative care needs that are likely to need SLPC input. To ensure and enable all healthcare professionals can, and do, identify needs early and triage action:  

• Specialist and generalist professionals require skills to undertake comprehensive assessment to determine evolving unmet needs.
• Access to the wider professional team (including SLPC) throughout the illness is crucial and should be based on level of need rather than prognosis.
• Collaborative and integrated working with the wider professional teams may encourage realistic care goals and preferences throughout the uncertain heart failure illness trajectory and approaching end of life.

4. Care is co-ordinated 

Not all patients will need referral to SLPC. Most supportive and palliative care needs can be addressed by primary care, heart failure or hospital teams with the support of the SLPC team if needed. To achieve this:

• A system-wide response requires a contemporaneous register, cohesive working and communication, to ensure co-ordinated, responsive, high quality care and support irrespective of environment. Identifying a care co-ordinator and consistent use of coding metrics help with this.
• Communicating and sharing key information, using digital shared records within and across care settings involved in the delivery of care 24/7, including emergency services is crucial. Consider social care integration as part of this.

5. All staff are prepared to care 

Integrated, personalised care should be supported by a multidisciplinary team which includes SLPC healthcare professionals. This combined approach as part of standard care will help address patient and unpaid carer misapprehensions and support realistic expectations. An important message for professionals and patients/unpaid carers alike is that integrating palliative care does not mean stopping active heart failure treatments. This can be enabled by:

• Adopting flexible learning and development approaches in the clinical environment, which provides opportunities for sharing knowledge, skills and expertise, particularly between heart failure and SLPC teams. This may take place in different formats such as multidisciplinary team (MDT) meetings and joint reviews, which encourage trust and relationship building and foster long-term resilience.
• Accessing heart failure palliative and end of life care information and training resources, many of which are available electronically.

6. Each community is prepared to help 

Education about death, dying and bereavement, and what palliative and end of life care has to offer earlier in the heart failure trajectory, is essential for changing perceptions that currently inhibit concurrent heart failure and palliative care integration. Resources for patients and unpaid carers are available through voluntary, community and social enterprise organisations.

Supporting unpaid carers early helps to develop their role as the ‘expert-carer’, manage expectations, reduce anxiety and allow them to integrate within the care team. This is important as about 40% of patients with heart failure have some cognitive impairment, relying on their unpaid carers to help with decision-making – which increases the unpaid carers’ burden. Unpaid carers can only contribute fully if their vulnerabilities and needs are recognised and addressed. This enables patients to live well, experience a dignified death and leave behind a positive legacy; it also reduces the risk of their unpaid carers having a complicated and unsupported bereavement.

Cardiac supportive palliative care guidance

The components of early identification of a needs-based approach, as provided by the Cardiac Supportive Palliative Care Core Components (see Figure 1 below), include:

• person-centred meaningful conversations
• comprehensive assessment
• advance care planning
• cohesive multidisciplinary working across health and social care providers
• integrated audit and ongoing evaluation.

These are measurable, enabling commissioners to view their local services from a different perspective to that of the Ambitions Framework above, to ensure they implement a comprehensive approach.

Figure 1: Cardiac supportive palliative care core components

Source: Millerick Y, Barton C, Welstand J. [2022] Cardiac supportive palliative care guidance (CS-PCG): professional resource. Available at: https://www.bsh.org.uk/patient-information.

Requisites and measures

Requisites for achieving palliative and end of life care for people living with heart failure.

1. Up-to-date palliative care needs assessment and co-designed care plans for everybody with heart failure, soon after diagnosis and regardless of left ventricular ejection fraction. Updates may be at routine review in primary or secondary care, or after triggers such as hospital admission, emergency department attendance for medical concerns, contact with out-of-hours services, reduced tolerance of target heart failure treatments, persistent/progressive renal failure, declining performance status, frailty, associated co-morbidity, etc. Care plans should be shared across the system. Assessment should be proactive and not rely solely on concerns volunteered by patients and carers.
2. Advance care planning integral to personalised care and support planning, created in partnership with the person and unpaid carers (to the extent the person wishes); shared as part of digital shared records across care settings and services, including emergency services. Advance care planning should be initiated by usual cardiology teams and primary care teams, rather than waiting for SLPC services to complete these, thereby disadvantaging those otherwise not needing SLPC.
3. Unpaid carers regarded as partners in decision-making with the person’s consent. Empowering, assessing and addressing unpaid carers’ evolving unmet needs reduce the risk of complex grief and bereavement.
4. Recognition of need for palliative care approach, and advance care planning for people with advanced heart failure accepted as the responsibility of primary, community and secondary care.
5. Agreed processes for timely referral to SLPC for patients with complex needs – for example, persistent symptoms and unmet other concerns (psychological, social, financial, and practical issues, as well as worries about family) – and not delayed until deterioration is considered irreversible. Referrals to SLPC should be based on need irrespective of estimated prognosis, or option of further cardiac treatment. Emphasis placed on co-ordination across all care settings as required.
6. Access to heart failure and/or cardiology and/or elderly care MDT for all patients with heart failure in secondary care, regardless of ejection fraction. Core membership of the MDT must include a specialist in palliative care.
7. Training and education of workforce involved in delivering heart failure and palliative care services to ensure people experience professionalism and compassion. Professionals should be trained, competent, confident and supported with resilience strategies including bereavement training.
8. System approach – an integrated system project group to benchmark locality provision of palliative and end of life care for people with heart failure and to identify and address gaps, informed by patient and carers’ outcome and experience.

Suggestions for useful metrics:

• Proportion of people with heart failure who have documented needs assessments /personalised plan in clinical records
• Proportion of people with New York Heart Association (NYHA) Functional Classification III/IV who have an advance care plan in their clinical record and evidence of this being shared
• Evidence of unpaid carers’ needs assessment
• Evidence of agreed local SLPC referral process including eligibility criteria
• Proportion of people with heart failure referred to SLPC who have evidence of needs assessment
• Proportion of people on GP practice heart failure register who died in previous year who were also on palliative register
• Proportion of people discussed at practice-based palliative MDT meetings who have heart failure as primary diagnosis
• Proportion of cardiology or care of elderly MDT meetings with attendance by SLPC healthcare professional
• Evidence of collaborative MDT palliative and cardiology education/training activity and resources (for example, programme, local training needs analysis), with proportion of MDT members in attendance
• Evidence of heart failure palliative end of life care service provision as an agenda item at ICB meetings
• Evidence of hearing patient stories about their experiences of living with advanced heart failure at ICB meetings
• Evidence of patients and unpaid carers being included in co-design of service developments
• Evidence of agreed coding metrics included in standard patient communication between services

Next steps

Next steps are:

1. Prioritise heart failure palliative care as an ICB project. This needs to be identified in both the ICB overall PEoLC strategic plan and the cardiovascular disease strategic plan.
2. Establish an integrated care system project group including, but not exclusively, primary care, heart failure and palliative care specialist nurses, cardiologists, palliative care physicians, pharmacists, allied healthcare professionals and rehabilitation specialists, ageing well team, virtual ward team and patient and unpaid carers representatives, bereavement, pastoral and spiritual specialist providers – all of whom can assist in developing and engaging links with appropriate networks, compassionate communities and social care.
3. Liaise with both your cardiac clinical network and PEoLC network and understand their current work programmes, workforce agenda and any resource implications. Consider whether this might be across more than a single ICS footprint.
4. Assess baseline with cardiac and PEoLC commissioning groups and networks by mapping the existing systems against the six ambitions framework statements for heart failure detailed above and using the self-assessment framework available on FutureNHS. To request access, contact england.palliativeandendoflife@nhs.net.  
5. Define your current performance using the metrics above as a minimum dataset, as well as comparing outcomes to those with cancer. Use local and national data resources and tools to support and build a system-wide view.
6. Develop a service improvement/quality improvement action plan to improve outcomes and care experience for people with heart failure, their unpaid carers and those important to them.

Appendix 1: definitions

Heart failure happens when the heart is unable to pump enough blood around the body. It is a long-term condition that can get worse over time. There are many causes including coronary artery disease, heart valve disease, heart rhythm abnormalities, cardiomyopathies, congenital heart disease, viral infections, hypertension.

Left ventricular ejection fraction (LVEF) is a measurement of contractile performance of the heart’s main pumping chamber (left ventricle). LVEF is the proportion of blood that the left ventricle pumps out (ejects) in one beat. This measurement is expressed as a percentage. A normal LVEF is 55-60%. Heart failure can be classified by LVEF into one of three groups to guide treatment and management.

All heart failure, includes the following:

• HFrEF – Heart failure with reduced LV ejection fraction
• HFmrEF – Heart failure with mildly reduced LV ejection fraction
• HFpEF – Heart failure with preserved LV ejection fraction

The most commonly used classification system, the New York Heart Association (NYHA) Functional Classification, places patients in one of four categories based on limitations of physical activity:

• Class I – No limitation of physical activity. Ordinary physical activity does not cause undue fatigue, palpitation or shortness of breath.
• Class II – Slight limitation of physical activity. Comfortable at rest. Ordinary physical activity results in fatigue, palpitation, shortness of breath or chest pain.
• Class III – Marked limitation of physical activity. Comfortable at rest. Less than ordinary activity causes fatigue, palpitation, shortness of breath or chest pain.
• Class IV – Symptoms of heart failure at rest. Any physical activity causes further discomfort.

End of life and palliative care are defined by the Palliative End of Life Partnership in the One Chance to Get it Right report, produced in June 2014 by the Leadership Alliance for the Care of Dying People:

End of life

Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with: a) advanced, progressive, incurable conditions; b) general frailty and co-existing conditions that mean they are expected to die within 12 months; c) existing conditions if they are at risk of dying from a sudden acute crisis in their condition; d) life-threatening acute conditions caused by sudden catastrophic events. In General Medical Council guidance, the term ‘approaching the end of life’ also applies to those extremely premature neonates whose prospects for survival are known to be very poor, and to patients who are diagnosed as being in a persistent vegetative state (PVS) for whom a decision to withdraw treatment may lead to their death.

Palliative care

The World Health Organisation has defined palliative care as follows: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient’s illness and in their own bereavement; uses a team approach to address the needs of patients and their families; enhances quality of life and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, and includes those investigations needed to better understand and manage clinical complications. Palliative care can be provided by a range of health and social care staff and may be done alongside treatment intended to reverse particular conditions.

Appendix 2: why should a palliative care needs assessment start at diagnosis?

Heart failure is a life-limiting illness not limited to an ageing population but highly prevalent in it. There is a tendency to think of palliative care as ‘end of life care’, instead of support for and palliation of symptoms and other concerns alongside heart failure directed care.

Comprehensive assessment provides an opportunity to identify need which may include palliative care, from diagnosis onwards. Starting at diagnosis not only identifies any current needs but enables person-centred conversations to begin about living with heart failure and planning future care.

The End-of-Life Care Think Tank, a group of independent charities, research organisations and health and social care bodies, developed a ‘What matters when it matters’ programme and charter, to encourage lifelong conversations about what matters for the future. This ‘what matters’ approach is endorsed by the Royal College of General Practitioners as part of the Daffodil Standards, developed in partnership with Marie Curie as an evidence-based framework to help practices self-assess and offer the best palliative and bereavement care.

Assessing from diagnosis onwards supports:

• The opportunity for honest conversations at the patient’s pace. A ‘what matters’ approach allows space for reflection and formulation of questions that matter to the individual. This embraces a patient-centred approach which values diversity of cultural and spiritual beliefs and supports how questions, concerns and uncertainty develop. This encourages a conversational rather than a tick box approach and eradicates the need for professionals to find the right time to initiate these conversations.
• Using validated tools enables a broader assessment of needs that might be missed. This includes a wider selection of symptoms or other physical problems, or if there are practical, financial, legal, ethical, cultural, emotional, spiritual, religious or existential problems or concerns. The identification of an issue might warrant a more in-depth assessment, a referral to another healthcare professional or agency, signposting to a resource or a conversation at an MDT meeting for advice about potential management solutions/options.
• Assessment of unpaid carers’ needs or concerns is essential, as it provides evidence of their willingness and capacity to meet current or future needs.
• Assessing evolving care needs using validated assessment tools can evidence change associated with improvement and/or deterioration.
• The information and conversation will support the creation of personal care plans and advance care plans, which reflect realistic goals of care and care preferences.

Appendix 3: examples of validated palliative care assessment tools

This list provides a sample of palliative care assessment tools validated for use in clinical practice; they are not recommendations and there are many others. Palliative care assessment tools should be used with other validated tools, such as frailty, nutrition, unpaid carers strain etc, considered necessary to complete individualised comprehensive assessment.

• Palliative Care Outcome Scale (POS) – Kane PM, Daveson BA, Ryan K, Ellis-Smith CI, Mahon NG, McAdam B, et al. Feasibility and acceptability of a patient- reported outcome intervention in chronic heart failure. BMJ Support Palliat Care. 2017;7(4):470–9. 
• Supportive and Palliative Care Indicators Tool (SPICT) – Highet G, Crawford D, Murray SA, Boyd K (2014) Development and evaluation of the supportive and palliative care indicators tool (SPICT): a mixed-methods study. BMJ Support Palliat Care 4(3): 285–290. 
• Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) – Waller A, Girgis A, Davidson PM, Newton PJ, Lecathelinais C, MacDonald PS et al (2013). Facilitating needs-based support and palliative care for people with chronic heart failure: preliminary evidence for the acceptability, inter-rater reliability, and validity of a needs assessment tool. J Pain Symptom Manag 45(5):912–925. 
• Kansas City Cardiomyopathy Questionnaire (KCCQ) – Green CP, Porter CB, Bresnahan DR, Spertus JA. Development and evaluation of the Kansas City Cardiomyopathy Questionnaire: a new health status measure for heart failure. J Am Coll Cardiol. 2000 Apr;35(5):1245-55. [PMID: 10758967].
• Carer Support Needs Assessment Tool (CSNAT) – The Carer Support Needs Assessment Tool Intervention (CSNAT-I). [internet] 2022 [cited 16 Feb 2023].
• Phase of Illness Assessment – Witt J, Murtagh F E M, de Wolf-Linder S, Higginson IJ, Daveson B A. Introducing the Outcome Assessment and Complexity Collaborative (OACC) suite of measures: a brief introduction. London: Cicely Saunders Institute; 2014.

Appendix 4: acknowledgements

Project team

• Anita Hayes, Head of Clinical Leadership Hospice UK
• Dr Jenny Welstand, Palliative Heart Failure Nurse Specialist Freelance Associate Hospice UK, Lead Author
• Dr Raj Thakkar, GP, Bourne End and Wooburn Green Medical Centre, Clinical Commissioning Director (Planned Care), Buckinghamshire, Oxfordshire and Berkshire West Integrated Care System, Primary Care Cardiology Lead, Oxford Academic Health Science Network, President Elect and Chronic Kidney Disease Lead, Primary Care Cardiovascular Society, National Primary Care Workstream Co-lead, Cardiac Transformation Programme, NHS England
• Dr Stephen Pettit, Consultant Cardiologist, Royal Papworth Hospital
• Julia Russell, Senior Clinical and Quality Improvement Manager Hospice UK
• Nick Hartshorne-Evans: Chief Executive Officer/Founder Pumping Marvellous Foundation, the UK’s patient-led heart failure charity
• Professor Ahmet Fuat: GP with Special Interest in Cardiology Carmel Medical Practice, Darlington and Honorary Professor of Primary Care Cardiology at Durham University, Member of National Expert Advisory Group on Heart Failure and Heart Valve Disease
• Professor Miriam Johnson: Professor of Palliative Medicine, Hull York Medical School and Associate Director of the Wolfson Palliative Care Research Centre
• Stephen Kirkham, Transplant recipient, diagnosed with dilated cardiomyopathy and severe heart failure in 2005, was on mechanical support and very close to death in 2015 and a trustee of Cardiomyopathy UK and an active patient advocate.
• Yvonne Millerick, Heart Failure Palliative Care Nurse Consultant Senior Lecturer, Glasgow Caledonian University

With grateful acknowledgment of support from Amber Morgan and Melanie Hodson Hospice UK

Stakeholders

We would like to thank these stakeholders who kindly gave their time and expertise to review early drafts of this publication; their knowledge and opinion helped to shape the final version.

• Dr Alicja Jasinska-Piadlo, Specialist Registrar in Cardiology, Northern Ireland Medical and Dental Training Agency and PhD Research Fellow in Heart Failure Data Analytics, Southern Health and Social Care Trust, Ulster University
• Dr Diane Laverty, Macmillan Nurse Consultant: Palliative and End of Life Care, London Ambulance Service
• Dr James M Beattie, Visiting Senior Lecturer, School of Cardiovascular Medicine and Sciences, and Cicely Saunders Institute, King’s College London
• Dr John Baxter, Consultant Geriatrician, British Society for Heart Failure
• Dr Joy Ross, Lead Palliative Care Consultant, St Christopher’s Hospice, London
• Dr Karen Chumbley, Clinical Lead for End of Life Care, Suffolk and North East Essex Integrated Care System Visiting Senior and Fellow in End of Life Care, Integrated Care Academy, University of Suffolk
• Dr Karen Hogg, Consultant Cardiologist, Glasgow Royal Infirmary NHS GGC
• Dr Lisa Anderson, Consultant Cardiologist, St Georges Hospital, London and British Society for Heart Failure
• Dr Martin Ashby, Consultant, East Surrey Hospital
• Dr Rebecca Lane, Consultant Cardiologist, Royal Brompton and Harefield
• Dr Sarah Zaidi, Clinical Director, South East Essex Alliance and Clinical Ageing Well Steward, Essex Partnership University Trust
• Dr Tracey McConnell, Senior Research Fellow, School of Nursing and Midwifery, Marie Curie
• Emma McMullan, Heart Failure Advanced Nurse Practitioner, Ulster Hospital, South Eastern Health and Social Care Trust, British Society for Heart Failure and Northern Ireland Heart Failure Nurse Forum
• Gail Precious, Programme Manager, Childhood Bereavement Network and National Bereavement Alliance
• Hayley Rose, Heart Failure Nurse Specialist, British Society for Heart Failure
• Jane Eades, Deputy Director Nursing and Quality, Marie Curie
• Janine Beezer, Advanced Clinical Pharmacist – Heart Failure, South Tyneside and Sunderland Foundation Trust and Co-Chair, Heart Failure committee, UK Clinical Pharmacy Association – Heart Failure
• Jayne Masters, Heart Failure Nurse Consultant, British Society for Heart Failure
• Jill Nicholls, Advanced Heart Failure Specialist Nurse, Scottish Heart Failure Nurse Forum and British Society for Heart Failure
• Jo Bateman, Lead Cardiology Pharmacist/Heart Failure Service Lead, Countess of Chester Hospital and Co-Chair Heart Failure committee, UK Clinical Pharmacy Association – Heart Failure
• Jonathan Ellis, Director of Policy, Advocacy and Clinical Programmes, Hospice UK
• Karen McCammon, Health and Care Lead, British Heart Foundation
• Kate Heaps, Chief Executive Officer, Greenwich and Bexley Community Hospice
• Poppy Brooks, Heart Failure Nurse Specialist, Royal Devon University Healthcare NHS Foundation Trust and Chair, British Society for Heart Failure Nurse Forum
• Professor Jackie Taylor, Consultant Geriatrician, Glasgow Royal Infirmary
• Professor Max Watson, Project Extension of Community Healthcare Outcomes Programme Director, Hospice UK
• Rachel Goode, Heart Failure/Complex Device Lead Specialist Nurse, Liverpool Heart and Chest Hospital and British Society for Heart Failure
• Rachel Warren, Senior Policy and Research Manager, Marie Curie
• Rebecca Chapanga, Project lead End stage Heart Failure, Clinical Nurse Specialist in palliative care, Greenwich and Bexley Community Hospice
• Rebecca Tibirini, Rehabilitative Palliative Care Consultant
• The Revd Susan van Beveren, Head of Chaplaincy, Pastoral and Spiritual Support Services, Kingston Hospital NHS Foundation Trust

Publication reference: PRN00291