Palliative Care of Heart Failure

The management of heart failure has improved considerably in recent years but there still remains a significant number of people who will die from this chronic disease and who will benefit from palliative care. We tend to associate palliative care with cancer but it is applicable to any chronic and fatal disease, including respiratory failure, neurological disease, AIDS and congestive heart failure (CHF). There is considerable knowledge and experience of looking after patients with cancer and it is possible to transfer this knowledge to all forms of palliative care. CHF impairs quality of life more than almost any other chronic medical problem.

The NSF for coronary heart disease identified the need for palliative care.¹ 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.² 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.
• CHF has an overall population prevalence of approximately 1 to 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 1000 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 health care expenditure.
• Despite improvements in medical management, under-treatment is common. Because of the increase in survival after acute myocardial infarction 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 health care challenges of the 21st century.
• A recent analysis in the United States 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.⁴

The most appropriate place of care is not dependent upon the aetiology of the terminal condition. Most people would prefer dying at home if there is sufficient support in all ways. The hospice movement has made a great impact and they deal with all forms of terminal care.

• Chronic heart failure produces a wide range of symptoms, not all of them recognised or treated adequately.⁶ The most common limiting and distressing complaint is of fatigue and breathlessness. All should be done to manage the heart failure as effectively as possible. The position of the patient needs attention. Oxygen may well be helpful.⁷ If dyspnoea remains a problem then morphine has much to commend it.⁸ 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.⁹ Dyspnoea in Palliative Care is discussed more fully elsewhere.
• Depression may occur in about a third of patients and is often overlooked. It should be sought and treated if found. In cancer the tricyclic antidepressants have much to commend them but in heart failure they are best avoided.
• Pain is very common, especially in the terminal stages. One common cause is stretching of the capsule of the liver.¹⁰ It should be managed in the usual way for palliative care except that non-steroidal anti-inflammatories 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.¹¹
• 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% patients with pain, 31% with constipation, 24% with dyspnoea and 24% with nausea or vomiting.¹²

• Despite all that has been learned about communication with cancer patients, patients with CHF are still being ignored. 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.¹⁴ 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.¹⁵
• Ascertain 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. Again the article on dyspnoea in palliative care is recommended as covering a considerable amount of ground, including coping with the patient who is in panic and very distressed.
• Getting 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, getting in calories, improving mood and general self esteem. Sometimes people are reluctant to permit alcohol in a regimen of many drugs. If the beneficial effects of morphine are permitted, why not alcohol?
• Specially trained nurses can improve the management of patients with heart failure in hospital and there is already outreach to the community.^16,17 The recognition that heart failure is deserving of specialised palliative care services is however still not universally recognised in the UK, even in secondary care.¹⁸

The life expectancy for patients with 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.¹⁹ This situation prevails, despite advances in therapy.²⁰ Predicting death can be very difficult and in one American study, 54% of those who were expected to live for another 6 months died within 3 days.²¹ Various risk stratification methods, based on patient profiles and clinical features, are being developed to make the assessment of life expectancy more accurate.²²

Despite the great improvements in management of CHF it remains a common, serious and increasing problem in terms of the need for palliative care. The many lessons that have been learned about palliative care for cancer patients are not being transposed to CHF patients. Talking to the patients, managing pain, nausea and distress and the many facets of good terminal care are not receiving the attention they deserve. By and large, this is an area in which there is much room for improvement. In a study from 1997,2 54% of patients died in hospital, 30% in their own home, 11% in a nursing or residential home, and 4% in other places.
As a result of a survey of patients, carers and clinicians, the Department of Policy, Care and Rehabilitation at King's College Hospital, London devised the following recommendations:²³

• 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 CHF.