Professional Reference articles are designed for health professionals to use. They are written by UK doctors and based on research evidence, UK and European Guidelines. You may find the Congestive Heart Failure article more useful, or one of our other health articles.
Treatment of almost all medical conditions has been affected by the COVID-19 pandemic. NICE has issued rapid update guidelines in relation to many of these. This guidance is changing frequently. Please visit https://www.nice.org.uk/covid-19 to see if there is temporary guidance issued by NICE in relation to the management of this condition, which may vary from the information given below.
The management of heart failure has improved considerably in recent years but people with heart failure and their families experience stress and suffering from a variety of sources. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of life and alleviates suffering for those living with any serious illness, regardless of prognosis.
Available evidence suggests that home and team-based palliative interventions for heart failure patients improves patient-centered outcomes, including hospital readmission, and documentation of preferences.[2, 3]
Regarding heart failure in the UK, 1, 5 and 10-year survival rates increased by 6.6% (from 74.2% in 2000 to 80.8% in 2016), 7.2% (from 41.0% in 2000 to 48.2% in 2012), and 6.4% (from 19.8% in 2000 to 26.2% in 2007). Improvement in survival was on average 2.4 years greater for patients not requiring admission to hospital around the time of diagnosis (5.3 vs 2.9 years).
The last six months of life for a heart failure patient are often characterised by frequent hospital admissions, procedures and intensive care use, often culminating in a hospital death. The unpredictable course and life-limiting nature of heart failure suggest patients with heart failure would benefit from palliative care.
Historically, heart failure palliative care referrals were initiated when the patient was felt to have a life expectancy six months or less. This model proved ineffective, as many clinicians would defer or delay palliative care referral until they were certain a patient was dying.
The National Institute for Health and Care Excellence (NICE) has identified the need for palliative care for people with advanced chronic heart failure.
Place of care
The most appropriate place of care does not depend on the aetiology of the terminal condition. Most people would prefer dying at home if there is sufficient support. The hospice movement has made a great impact and deals with all forms of terminal care. Specially trained nurses can improve the management of patients with heart failure in hospital and there is also outreach to the community. Nurse-led community management can provide support with:
- Regular follow-up and assessment, including blood chemistry, to detect early clinical deterioration.
- Continued adjustment and optimisation of therapy according to agreed protocols.
- Promotion and support of self-management, including daily monitoring of weight.
- Education: covering both pharmacological and non-pharmacological aspects of care, including exercise and nutrition advice.
- Acting as an intermediary between the patient and other professionals - eg, cardiologists and the primary healthcare team.
- Provision of support for patients and their carers.
Heart failure produces a wide range of symptoms.
- Fatigue and breathlessness (see below) are the most common limiting and distressing complaints:
- The position of the patient (supine/prone) should be considered.
- Oxygen may well be helpful.
- If dyspnoea remains a problem then morphine is often effective. It does not cause undue suppression of the respiratory drive but it does help to relieve distress and can have a pharmacological action to improve left ventricular failure.
- Depression may occur in about a third of patients and is often overlooked:
- It should be sought and treated if found.
- Tricyclic antidepressants are best avoided in heart failure.
- Pain is very common, especially in the terminal stages:
- One common cause is stretching of the capsule of the liver.
- It should be managed in the usual way for palliative care except that non-steroidal anti-inflammatory drugs should be avoided.
- Morphine or diamorphine may be of value for both pain and dyspnoea.
- Nausea and decreased appetite are common problems and may result in such low nutritional intake that health is impaired:
- Factors include decreased hunger sensations, diet restrictions, fatigue, shortness of breath, nausea, anxiety and sadness.
- In the elderly, early satiety, decreased taste and smell, and eating alone also contribute.
See also the article on Heart Failure Management.
Heart failure patients are still being ignored despite all that has been learned from communicating with cancer patients. Advanced care planning has been shown to improve quality of life, patient satisfaction with end-of-life care, and the quality of end-of-life communication for patients suffering from heart failure.
- Talk to the patient. Spend some unhurried time. Find out what they know. Breaking bad news is not easy but it must be done.
- Patients want to learn about their prognosis at a time when they have optimum cerebral function. They want an honest discussion about treatment options and prognosis but do not want to be left bereft of hope.
- Poor cerebral blood flow is likely to lead to confusion and memory problems. Therefore, it may be necessary to repeat information that has already been given.
- Poor imparting of information and disease-specific barriers to effective communication, such as short-term memory loss, confusion and fatigue, should be addressed.
Make sure that maximum tolerated doses of drugs are used to control the heart failure. Dyspnoea can be extremely distressing and a much-feared way to die. See the separate Dyspnoea in Palliative Care article which covers many aspects of care, including coping with the patient who is panicking and distressed.
Maintaining adequate nutrition is important and difficult. Small, frequent, easily digested and appetising meals are required.
- Despite advances in therapy, the life expectancy for patients with heart failure is worse than for any of the common cancers and is associated with a comparable number of expected life-years lost.
- In Scotland, as in many other countries, despite progressive heart failure therapeutic strategies, the prognosis has remained poor compared to many cancers. After first hospitalisation with heart failure 50% of men and women have died by 2.3 years and 1.7 years respectively.
- In one American study, 54% of those who were expected to live for another six months died within three days.
- Various risk stratification methods, based on patient profiles and clinical features, are being developed to make the assessment of life expectancy more accurate.
Talking to the patients, managing pain, nausea and distress, and the many facets of good terminal care are not receiving the attention they deserve.
The Department of Policy, Care and Rehabilitation at King's College Hospital, London devised the following recommendations:
- Sensitive provision of information and discussion of end-of-life issues with patients and families.
- Mutual education of cardiology and palliative care staff.
- Mutually agreed palliative care referral criteria and care pathways for patients with heart failure.
Further reading and references
Diagnosing and managing acute heart failure in adults; NICE Clinical Guidelines (Oct 2014 - updated Nov 2021)
2021 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: Developed by the Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC) With the special contribution of the Heart Failure Association (HFA) of the ESC
Heidenreich PA, Bozkurt B, Aguilar D, et al; 2022 AHA/ACC/HFSA Guideline for the Management of Heart Failure: A Report of the American College of Cardiology/American Heart Association Joint Committee on Clinical Practice Guidelines. Circulation. 2022 May 3145(18):e895-e1032. doi: 10.1161/CIR.0000000000001063. Epub 2022 Apr 1.
Truby LK, Rogers JG; Advanced Heart Failure: Epidemiology, Diagnosis, and Therapeutic Approaches. JACC Heart Fail. 2020 Jul8(7):523-536. doi: 10.1016/j.jchf.2020.01.014. Epub 2020 Jun 10.
Kavalieratos D, Gelfman LP, Tycon LE, et al; Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities. J Am Coll Cardiol. 2017 Oct 1070(15):1919-1930. doi: 10.1016/j.jacc.2017.08.036.
Diop MS, Rudolph JL, Zimmerman KM, et al; Palliative Care Interventions for Patients with Heart Failure: A Systematic Review and Meta-Analysis. J Palliat Med. 2017 Jan20(1):84-92. doi: 10.1089/jpm.2016.0330. Epub 2016 Dec 2.
Xu Z, Chen L, Jin S, et al; Effect of Palliative Care for Patients with Heart Failure. Int Heart J. 2018 May 3059(3):503-509. doi: 10.1536/ihj.17-289. Epub 2018 May 20.
Maciver J, Ross HJ; A palliative approach for heart failure end-of-life care. Curr Opin Cardiol. 2018 Mar33(2):202-207. doi: 10.1097/HCO.0000000000000484.
Chronic heart failure in adults - diagnosis and management; NICE Guidance (Sept 2018)
Takeda A, Taylor SJ, Taylor RS, et al; Clinical service organisation for heart failure. Cochrane Database Syst Rev. 2012 Sep 129:CD002752. doi: 10.1002/14651858.CD002752.pub3.
Heart failure - chronic; NICE CKS, September 2022 (UK access only)
Lennie TA, Moser DK, Heo S, et al; Factors influencing food intake in patients with heart failure: a comparison with healthy elders. J Cardiovasc Nurs. 2006 Mar-Apr21(2):123-9.
Management of chronic heart failure; Scottish Intercollegiate Guidelines Network - SIGN (2016)
Schichtel M, Wee B, Perera R, et al; The Effect of Advance Care Planning on Heart Failure: a Systematic Review and Meta-analysis. J Gen Intern Med. 2020 Mar35(3):874-884. doi: 10.1007/s11606-019-05482-w. Epub 2019 Nov 12.
Caldwell PH, Arthur HM, Demers C; Preferences of patients with heart failure for prognosis communication. Can J Cardiol. 2007 Aug23(10):791-6.
Fonarow GC; Epidemiology and risk stratification in acute heart failure. Am Heart J. 2008 Feb155(2):200-7. Epub 2007 Nov 26.
Selman L, Harding R, Beynon T, et al; Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't". Heart. 2007 Aug93(8):963-7. Epub 2007 Feb 19.