Angie Rogers

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

Care of the dying stroke patient in the acute setting

Stroke is the third most common cause of death in England and Wales, accounting for 11% of all deaths. Predictors of early mortality following stroke have been known for over a century and include a history of stroke, age, disorientation to time and place and level of consciousness. To date, hospices and specialist palliative care services have focused on caring for terminally ill cancer patients, with 95% of their patients in 2000–2001 having cancer. However it has been acknowledged since its inception that the practices and principles of palliative care may be relevant to those dying from other conditions. Recently there has been a growing interest in palliative care for non-cancer diagnosis and increasing recognition that palliative care should be provided on the basis of need rather than diagnosis. Despite the high levels of mortality following stroke, to date, little has been published about dying from stroke. In this study we report on a prospective qualitative study of the nursing and medical care received by dying stroke patients.

Dying for care: the experiences of terminally ill cancer patients in hospital in an inner city health district

Nearly half of terminally ill cancer patients in the UK die in acute hospitals.1 Some receive excellent care, but reports over the past 30 years have documented the poor care received by others,2–4 although efforts have been made to improve care. The Calman–Hine report emphasized the importance of palliative care in caring for patients with cancer, and recommended that the palliative care team be integrated ‘in a seamless way with all cancer treatment services to provide the best possible quality of life for the patient and family’.5 There are now well over 300 hospital palliative care teams.6 However, this paper reports results from a survey of cancer deaths in an inner city health district which suggest that patient care is unlikely to be improved by developments in palliative care alone.