Heart failure module 6: end-of-life care for people with heart failure

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Introduction

People with heart failure have a lower quality of life than the general population at any stage of their condition.1,2 They also have a significant symptom burden which worsens as the disease progresses.3 A collection of consensus and policy statements recognise the need for people with heart failure (HF) to be managed with a palliative approach and to access supportive and palliative care services as the need arises, and call for integrated team working between primary, secondary HF services, and specialist palliative care (SPC).4–7  

“Palliative care is an approach that improves the quality of life of patients and their families”
“Palliative care is an approach that improves the quality of life of patients and their families”

However, the provision of both a palliative approach to care in primary or secondary care and of access to SPC services is still patchy both nationally and internationally.8 Barriers to access are well described and include the unpredictable disease trajectory and poor communication between teams, for example between primary and secondary care about the appropriate ceiling of medical therapy.3 Clinicians avoid the difficult conversations due to concerns about destroying hope, compounded by healthcare services being poorly set up for these interventions in terms of time, environment and a focus on the acute problem.

Table 1. World Health Organisation definition of palliative care(9) (click to enlarge)
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What is palliative care?

Palliative care is an approach that improves the quality of life of patients and their families facing the problems 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.

Despite more than a decade since the World Health Organisation definition (see table 19) was written, important misunderstandings about palliative care persist. These include:

– a belief that palliative care is only applicable to patients for whom there is clearly apparent irreversible deterioration with death expected within weeks to months

– requires a “handing over” of the patient to the palliative care team

– only relates to physical symptom control in the dying patient and can only be provided once all other therapeutic options are exhausted.

Table 2 dispels some common myths about palliative care.

Palliative care is about the assessment of and response to the concerns affecting the quality of life for patients and their families to enable them to live as well as possible with serious illness. It is provided by the multi-professional team members involved in the patient’s care, with access to specialist palliative care, and other relevant services for persistent or complex needs.

Table 2. Myth busters about palliative care (click to enlarge)
Table 2

Problem-based integrated approach

A palliative care approach can and should run in parallel with conventional HF management. Regular assessments that include holistic symptom control, carers’ needs, education and communication, including decision-making about future medical care, should take place.4–6 The level of palliative care intervention at different stages in a patient’s disease process will vary from patient to patient dependent on their individual need. Most patients will have their palliative care needs met in primary care and by their usual secondary care teams, but some will require access to specialist palliative care services. This integrated strategy permits continued optimisation of HF therapy with palliative care intervention or referral to an integrated HF and palliative care service based on need rather than the often uncertain prognosis.12,13