Living with and dying from heart failure: the role of palliative care

he aim of palliative care is to improve the quality of life in the broadest sense for patients with incurable disease. It also aims to improve the quality of dying (to achieve a “good” death) and to ameliorate the devastating effect of dying on the family and carers. Specialist palliative care is a young speciality in the UK. Many of the modern concepts were put in place by Dame Cicely Saunders when she opened St Christopher’s Hospice in 1967, creating not only inpatient hospice beds but a large multi-professional home care outreach service HEART FAILURE Living with and dying from heart failure The work of John Hinton in 1963 recognised the physical and mental distress of dying in the wards of a London teaching hospital. He described high levels of physical and mental distress which were more pronounced in patients dying from heart or renal failure than with cancer. 1 He showed that considerable suffering remained unrelieved and observed that the symptom of breathlessness was more difficult to manage than that of pain. Most of the contemporary evidence for the experience of living with and dying from heart failure comes from two major studies. The first study to investigate symptoms in terminal heart disease in the UK was the regional study of care for the dying (RSCD). This was a population based retrospective survey of a random sample of people dying in 20 English health districts during 1990. This study included 675 patients dying from heart disease of all causes. Heart failure was not analysed separate from other cardiac causes of death. The study to understand prognoses and preferences for outcomes and risks of treatment (SUPPORT) was a prospective study undertaken in the USA at five academic medical centres. This study included nine diagnostic groups of hospitalised patients with an aggregate mortality rate of 50% within six months. Out of a total of 9105 patients 1404 had heart failure. The RSCD found that people who died from heart disease were reported to have experienced a wide range of symptoms, which were frequently distressing and often lasted for more than six months. 2

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