Heart failure module 7: end-of-life care for people with heart failure

Released 7 May 2020     Expires: 07 May 2022      Programme:

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“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”


At any stage of the disease, patients with heart failure have poorer quality of life than the general population1,2 largely due to the significant symptom burden which worsens as the disease progresses.3

There are very few data on the benefits of palliative care in patients with heart failure. A recent meta-analysis of all randomised controlled trial data involving 921 patients with heart failure found that palliative care interventions were associated with an improvement in quality of life and symptom burden and reduced hospitalisations compared to usual care.4

European Society of Cardiology (ESC) and National Institute of Health and Care Excellence (NICE) heart failure guidelines recognise the need for supportive and palliative care services for patients with end-stage heart failure.5,6

Integrated working between primary care, heart failure services and specialist palliative care is essential but a palliative approach to care and access to palliative care services is patchy both nationally and internationally.7

Barriers to effective palliative care in patients with heart failure include:

  • unpredictable disease trajectory
  • poor communication between members of the multidisciplinary team (MDT) – for example, a lack of clarity about the appropriate ceiling of medical therapy
  • reluctance of clinical staff to have the difficult conversations around the end of life due to concerns about destroying hope
  • healthcare services are poorly set up for timely and effective palliative interventions
  • lack of access for non-cancer patients to palliative care services.

What is palliative care?

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Table 1. World Health Organisation definition of palliative care7 (click to enlarge)

Palliative care (table 1) aims to improve the quality of life of patients with chronic or terminal illness and help their families face the problems associated with life-threatening illness. The primary goal is the prevention and relief of suffering by early identification, assessment and treatment of pain and/or psychological distress, as well as addressing spiritual needs.

There are several common misunderstandings about palliative care (table 2). 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.

Ultimately, palliative care is about enabling patients and their families to live as well as possible with serious illness.

Palliative care for patients with heart failure is provided by an MDT with a palliative care specialist in conjunction with a heart failure specialist, with access other relevant services for persistent or complex needs. It involves a problem-based integrated approach to advanced care planning, communication and symptom control. We shall address each aspect in turn.

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

Problem-based integrated approach

A palliative care approach should run in parallel with conventional heart failure management. A holistic approach is required, taking into consideration the patient’s symptoms, the carers’ needs, and the plans and expectations that all involved have.

Educating the patient, carers and families about the condition allows for informed joint decision making. This should be an ongoing process across every clinical encounter; the unpredictable trajectory of heart failure means constant reassessment of a patient’s risk of adverse outcome and, therefore, potential need for palliative care services, is essential.

The level of palliative care intervention at different stages in a patient’s disease will vary from patient to patient, dependent on their needs. Most patients can be cared for in primary care and by their usual secondary care teams, but some require access to specialist palliative care services. The integrated approach allows patients to receive palliative care depending upon need rather than prognosis.8,9

Advance care planning

Advance care planning is defined by the General Medical Council as “the process of discussing the type of treatment and care that a patient would or would not wish to receive in the event that they lose capacity to decide or are unable to express a preference.”10

Advanced care planning is important to many patients. It increases the likelihood of end-of-life wishes being carried out, and improves the quality of care for both patients and their carers.11–14


One aspect of advanced care planning is decision-making about preferred place of care. In the UK, there is a gross disparity between preferred place of care for cancer patients and heart failure patients. Palliative care services tend to be structured to meet the needs of patients with cancer, many of whom have a predictable disease trajectory; as a consequence, most patients will die at home or in a hospice. In contrast, patients dying from cardiovascular diseases, including heart failure, are much more likely to die in hospital (59%) with fewer than 1% dying in a hospice.15,16

Discussions about the appropriate “ceiling of care” are essential to avoid unnecessary hospital admissions or futile treatment – both of which ultimately may cause harm to the patient. For example, decisions regarding deactivation of an implantable cardioverter defibrillator (ICD) in a patient predicted to be in the last few weeks of life can be particularly difficult but are an essential aspect of care: if an ICD is not re-programmed to pacemaker mode only, dying may be complicated by repeated shocks.17


Guidance and training have been developed to help physicians and the many patients with heart failure who want to discuss end-of-life issues.18,19 Patients are involved in decisions about their future care despite uncertain disease trajectories by “hoping for the best, and preparing for the worst.”20-25

Such discussions should be ongoing through the natural history of disease and not reserved for when a patient displays clear signs of end-stage disease.

Regarding ICDs, it is good practice to inform the patient that the time may come at which treatment with an ICD is no longer appropriate as part of counselling before implantation.

Symptom control

Heart failure learning module 7 - Figure 1
Figure 1. Breathlessness is a particularly distressing symptom for patients with heart failure and their carers (click to enlarge)

Breathlessness (figure 1) is the dominant symptom of end-stage heart failure. Decisions on investigations and treatment must be taken in the context of the patient’s wishes and stage of the disease.

For example, aggressive treatment of pulmonary oedema with diuretics and vasodilators may not be appropriate for someone in the last few days of life whose primary wish is to be kept comfortable.

Palliative management of breathlessness may involve:

  • assessment and treatment of reversible causes dependent upon the patient’s wishes and stage of illness
  • subcutaneous furosemide infusion, which may be as effective as intravenous treatment for venous congestion and may prevent admission in patients with advanced heart failure21,22
  • cardiac exercise programmes which also address patient education and psycho-social support are available even for severely limited patients23
  • handheld fans which may ease the sensation of dyspnoea24
  • low-dose opioids which may improve symptoms of breathlessness in patients with heart failure.25 However, the largest trial to date was closed early due to poor recruitment, and the data in support of long-term opiate for breathlessness in patients with heart failure remain scant.26
  • benzodiazepines, although there is very little evidence to support their use. They should be used only as second-line agents.27

Despite its widespread use, there is no evidence to support the use of home oxygen as a treatment for breathlessness.28 Home oxygen therapy for patients with New York Heart Association (NYHA) III or IV class symptoms has no impact on quality of life measures.29

Pragmatic approach to heart failure treatment

Many medications used to treat heart failure lower blood pressure or heart rate yet confer prognostic benefit. Postural hypotension is common among elderly patients,30 and is associated with an increased risk of falls and injury.31 In patients with heart failure who are approaching the end of their lives, who often require high dose oral diuretic, continuing high-dose medications such as beta blockers, angiotensin-converting enzyme inhibitors and mineralocorticoid receptor antagonists may cause more harm than long term benefit.

How do we know a patient with heart failure is nearing the end of their life?

The natural history of heart failure is defined by periods of relative stability punctuated by periods of unpredictable and often sudden decline from which the patient may, or may not, recover. Thus, distinguishing patients whose condition is salvageable from those who are entering the last few weeks of life is difficult. The ESC list five criteria, the presence of one or more of which ought to prompt consideration of end-of-life care for patients in whom advanced treatment, such as with heart transplantation or left ventricular assist devices, has been deemed futile:4

  • progressive functional decline and increasing dependence with activities of daily living
  • severe symptoms and poor quality of life despite optimal heart failure management
  • frequent hospital admissions or other severe decompensation episodes despite optimal medical management
  • cardiac cachexia
  • clinically judged to be end-of-life for another reason such as severe infection or advanced cancer.


Incorporation of a palliative care approach in response to patient need rather than estimated prognosis will result in better care for patients with advanced heart failure. Interventions to support the patient and family with symptom control and improvement in quality of life can be used alongside optimal heart failure management. Palliative care should be provided by the usual clinical teams in primary and secondary care, with access to specialist palliative care services when needed for persistent or complex problems.

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  2. Hobbs FDR, Kenkre JE, Roalfe AK, Davis RC, Hare R, Davies MK. Impact of heart failure and left ventricular systolic dysfunction on quality of life. A cross-sectional study comparing common chronic cardiac and medical disorders and a representative adult population. Euro Heart J 2002;23:1867–76. http://dx.doi.org/10.1053/euhj.2002.3255
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  10. General Medical Council. Treatment and care towards the end of life: good practice in decision-making, 2010. Available from: http://www.gmc uk.org/guidance/ethical_guidance/end_of_life_care.asp
  11. Auerbach S. Should patients have control over their own health care?: Empirical evidence and research issues. Ann Behav Med 2000;22:246–59. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4118537/
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  29. Clark AL, Johnson M, Fairhurst C et al. Does home oxygen therapy (HOT) in addition to standard care reduce disease severity and improve symptoms in people with chronic heart failure? A randomised trial of home oxygen therapy for patients with chronic heart failure. Health Technol Assess 2015;19(75):1-120. https://dx.doi.org/10.3310/hta19750
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