Addressing Palliative and End-of-Life Care Needs for People Living with Heart Failure: A Revised Framework for Integrated Care Systems

Overview

This specialist Guidelines summary 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. This summary is intended for use in a secondary care setting by cardiologists.

For the complete set of recommendations, refer to the full guideline. 

A Needs-Based Approach to Palliative and End-of-Life Care

• 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, many 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.

Ambitions Framework

1. Each Person is Seen as an Individual

• Using a needs-based, rather than a 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
  • 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. 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 (dependent child/partner/sibling), and will therefore also require this assessment. 

3. Maximising Comfort and Wellbeing

• Assessment of supportive and palliative care needs at diagnosis may reveal a wide range of needs, from those with minimal physical or psychological distress 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 Coordinated

• 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 coordinated, responsive, high-quality care and support irrespective of environment. Identifying a care coordinator 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 delivering coordinated 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 (MDT), 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 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, 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.

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 comorbidity, 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 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 reduces 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 coordination 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.