The management of chronic heart failure (CHF) has improved considerably in recent years but there still remains a significant number of people who will die from this chronic disease. Many of those could benefit from palliative care. However, acknowledgement that heart failure deserves specialised palliative care services is still not universally the case in the UK, even in secondary care.
The National Service Framework (NSF) for coronary heart disease and the National Institute for Health and Clinical Excellence (NICE) have identified the need for palliative care. Around 40% will die within a year of diagnosis and the quality of life may well be poorer than with other illnesses. There is a heavy burden of symptoms, a lack of communication and many psychological and social needs that are not being met. Much of what has been learned from cancer care is not being applied to the care of end-stage heart failure.
- Around 750,000 people in the UK are thought to suffer from heart failure.
- Chronic heart failure (CHF) has an overall population prevalence of approximately 1-3%, rising to around 10% in the very elderly.
- Incidence and prevalence both increase dramatically over the age of 75 years, reaching to 43.5 and 190 per 1,000 population respectively.
- Following a first hospital admission for heart failure, patients have a 5-year mortality of 75%. This survival rate is worse than that for most forms of cancer.
- Men are affected rather more than women.
- Hospital admissions for CHF have increased markedly over the past two decades.
- CHF accounts for about 5% of all medical admissions and approximately 2% of total healthcare expenditure.
- Despite improvements in medical management, undertreatment is common. Because of the increase in survival after acute myocardial infarction (MI) and ageing of the population, the number of patients with CHF will increase rapidly in most industrialised countries. CHF will still pose one of the greatest healthcare challenges of the 21st century.
- A recent analysis in the USA found that, whilst the incidence of heart failure had declined somewhat in the last decade, modest survival gains had resulted in an increased number of patients living with heart failure.
- Add notes to any clinical page and create a reflective diary
- Automatically track and log every page you have viewed
- Print and export a summary to use in your appraisal
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 they deal with all forms of terminal care. Specially trained nurses can improve the management of patients with heart failure in hospital and there is already 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.
Chronic heart failure (CHF) produces a wide range of symptoms, not all of them recognised or treated adequately.
- 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 has much to commend it. 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.
- Diamorphine may confer some additional benefits.
- 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.
A survey of 600 carers of people who had died from CHF around 10 months previously reported great cause for concern. Pain, dyspnoea and low mood were reported to have been experienced by more than half the patients in their last year of life. Anxiety, constipation, nausea or vomiting, urinary incontinence and faecal incontinence, were experienced by a minority but caused much distress. Symptom control in hospital was reported to be limited. Little or no symptom relief was reported for 35% of patients with pain, 31% with constipation, 24% with dyspnoea and 24% with nausea or vomiting.
Chronic heart failure (CHF) patients are still being ignored despite all that has been learned from communicating with cancer patients:
- 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. The separate article Dyspnoea in Palliative Care is recommended; it 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. Alcohol can be a very useful means of improving appetite, taking in calories, and improving mood and general self-esteem.
- Despite advances in therapy, the life expectancy for patients with chronic heart failure (CHF) is worse than for any of the common cancers (except lung cancer) and is associated with a comparable number of expected life-years lost. In Scotland the five-year survival rate is approximately 25% for both sexes.
- In one American study, 54% of those who were expected to live for another 6 months died within 3 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 has 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 chronic heart failure (CHF).
Further reading & references
- Acute and Chronic Heart Failure, European Society of Cardiology (2012)
- Stewart S, McMurray JJ; Palliative care for heart failure.;BMJ. 2002 Oct 26;325(7370):915-6.[full text]
- Survival with common cancers and heart conditions, Bandolier, January 2002
- Gibbs LM, Khatri AK, Gibbs JS; Survey of specialist palliative care and heart failure: September 2004. Palliat Med. 2006 Sep;20(6):603-9.
- Coronary heart disease, National service frameworks and strategies, NHS Choices
- Chronic heart failure, NICE Clinical Guideline (August 2010)
- McCarthy M, Hall JA, Ley M; Communication and choice in dying from heart disease. J R Soc Med. 1997 Mar;90(3):128-31.
- Stewart S, MacIntyre K, Capewell S, et al; Heart failure and the aging population: an increasing burden in the 21st century? Heart. 2003 Jan;89(1):49-53.
- Curtis LH, Whellan DJ, Hammill BG, et al; Incidence and prevalence of heart failure in elderly persons, 1994-2003. Arch Intern Med. 2008 Feb 25;168(4):418-24.
- Gott M, Seymour J, Bellamy G, et al; Older people's views about home as a place of care at the end of life.; Palliat Med. 2004 Jul;18(5):460-7.
- Blue L, Lang E, McMurray JJ, et al; Randomised controlled trial of specialist nurse intervention in heart failure. BMJ. 2001 Sep 29;323(7315):715-8.
- Leslie SJ, McKee SP, Imray EA, et al; Management of chronic heart failure: perceived needs of general practitioners in light of the new general medical services contract. Postgrad Med J. 2005 May;81(955):321-6.
- Grange J; The role of nurses in the management of heart failure. Heart. 2005 May;91 Suppl 2:ii39-42; discussion ii43-8.
- Walke LM, Byers AL, Tinetti ME, et al; Range and severity of symptoms over time among older adults with chronic obstructive pulmonary disease and heart failure. Arch Intern Med. 2007 Dec 10;167(22):2503-8.
- Booth S, Wade R, Johnson M, et al; The use of oxygen in the palliation of breathlessness. A report of the expert working group of the Scientific Committee of the Association of Palliative Medicine. Respir Med. 2004 Jan;98(1):66-77.
- Clemens KE, Klaschik E; Symptomatic therapy of dyspnea with strong opioids and its effect on ventilation in palliative care patients. J Pain Symptom Manage. 2007 Apr;33(4):473-81.
- Williams SG, Wright DJ, Marshall P, et al; Safety and potential benefits of low dose diamorphine during exercise in patients with chronic heart failure. Heart. 2003 Sep;89(9):1085-6.
- ABC of heart failure - Clinical features and complications. Student BMJ 2000;08:45-88.
- 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-Apr;21(2):123-9.
- McCarthy M, Lay M, Addington-Hall J; Dying from heart disease. J R Coll Physicians Lond. 1996 Jul-Aug;30(4):325-8.
- Heart failure - chronic, Prodigy (November 2010)
- Caldwell PH, Arthur HM, Demers C; Preferences of patients with heart failure for prognosis communication. Can J Cardiol. 2007 Aug;23(10):791-6.
- Rogers AE, Addington-Hall JM, Abery AJ, et al; Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. BMJ. 2000 Sep 9;321(7261):605-7.
- Stewart S, MacIntyre K, Hole DJ, et al; More 'malignant' than cancer? Five-year survival following a first admission for heart failure. Eur J Heart Fail. 2001 Jun;3(3):315-22.
- Management of chronic heart failure, Scottish Intercollegiate Guidelines Network - SIGN (2007)
- Levenson JW, McCarthy EP, Lynn J, et al; The last six months of life for patients with congestive heart failure. J Am Geriatr Soc. 2000 May;48(5 Suppl):S101-9.
- Fonarow GC; Epidemiology and risk stratification in acute heart failure. Am Heart J. 2008 Feb;155(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 Aug;93(8):963-7. Epub 2007 Feb 19.
|Original Author: Dr Laurence Knott||Current Version: Dr Hayley Willacy||Peer Reviewer: Dr Hannah Gronow|
|Last Checked: 19/07/2012||Document ID: 2566 Version: 23||© EMIS|
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. EMIS has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.