Dying from heart failure: lessons from palliative care

Increasing interest and research into the care of the dying over the past 25 years have resulted in better symptom control, psychological support, and choice for people dying from cancer and their families.¹ Little attention has been paid, however, to patients with other life threatening diseases, such as AIDS, neurological conditions, respiratory failure, and heart failure. Palliative care, with its emphasis on the care of patients whose prognosis is limited, on quality (not quantity) of life, and on a multidisciplinary approach, may benefit patients other than those with cancer. One such group is patients dying from heart failure.

Heart failure is the only major cardiovascular disease with increasing prevalence, incidence, and mortality. Incidence and prevalence both increase dramatically over the age of 75 years—up to 43.5 and 190 per 1000 population respectively.² With age adjusted mortality from cardiovascular disease declining and the size of the elderly population growing, the absolute number of individuals living with compromised cardiac function is expected to increase dramatically over the next few decades.³ Modern treatments for heart failure slow but do not arrest progression of the disease. Despite the wealth of therapeutic advances, quality of life in chronic heart failure is poor⁴ and discomfort and distress often worse than in cancer.⁵

In the United Kingdom only one study has investigated symptoms in terminal heart disease: the regional study of care for the dying.⁶ This was a population based retrospective survey of a random sample of people dying in 20 English health districts in 1990. People who died from heart disease, including heart failure, had experienced a wide range of symptoms, often distressing and often lasting more than six months.⁷ In addition to dyspnoea, pain, nausea, constipation, and low mood were common and poorly controlled. At least one in six had symptoms as severe as those in patients with cancer managed in hospices or by palliative care services. Although many were thought to have known that they were dying, open communication with health professionals was rare.⁸

In the United States the SUPPORT study included 263 patients with heart failure.⁹ It showed severe symptoms in the last three days of life in patients with heart failure: 65% were breathless and 42% had severe pain. Forty percent of these patients received a major treatment intervention in the last three days of life, suggesting that doctors had not recognised the closeness of death. A salutary finding was that intervention by specially trained nurses to enhance decision making and improve patient care had no impact on symptom control or other outcome measures.

In heart failure, as in most diseases, the first step towards symptom control is optimisation of treatment of the underlying disease. The regional study of care of the dying suggests that this is not enough. The need for improved symptom control and greater emphasis on quality of life has been recognised,¹⁰,¹¹ but research into and provision of services for care of patients with end stage heart disease have been neglected.¹² Nurse practitioners have been advocated to help with patient management and may be effective.¹² Several trials are underway, but these may be premature since the needs of these patients have not been defined. Cost effective, appropriate, and acceptable services for these patients cannot be developed in the absence of good information on what their needs are and when to intervene to improve their lives.

The findings of the SUPPORT study suggest that the use of resources for the care of patients with heart failure will need to be imaginative to be effective. Anecdotal evidence exists that palliative care teams have managed patients with heart failure successfully using the same approach that helps cancer sufferers, but conventional hospice and specialist palliative care services could be overwhelmed by heart disease. Indeed, different models of care may be needed since patients with heart failure are more prone to sudden death than patients with cancer and do not necessarily have a clearly defined terminal phase. Specialist heart failure nurses may founder if they work in isolation. Palliative care is recognising the need to take stock of other terminal illnesses. Now is the time to collaborate and accelerate this change.