Choice and place of death: individual preferences, uncertainty, and the availability of care

Never before have people been faced with such levels of choice as now enjoyed by those living in affluent societies. Increases in technological possibilities and relatively high levels of disposable income have enabled large numbers of citizens to exercise choice in a wide variety of areas, from contraception to managing their infertility, from deciding where to educate children to which career to follow, which TV/DVD/computer to buy, where to holiday, etc. However, when it comes to deciding about death, choice is a more contentious notion. As the comedian Woody Allen once said ‘I am not afraid of death, I just don't want to be there when it happens.’ While individuals can influence their health and illness through lifestyle choices, most have relatively little choice with respect to the time, manner and place of their death.1 With recent moves to legalize euthanasia and physician-assisted suicide in some countries, choice regarding place and time of death has been extended. However, even where such choice is available, it tends to be utilized by relatively few people. Less than four percent of deaths in the Netherlands are reported to be by euthanasia.2 Although most people say that they would prefer to die at home, there has been a persistent fall in the proportion of people doing so. This trend has continued, with only 22% of cancer deaths in the UK in 2003 occurring there.3 The reasons for this are undoubtedly complex, involving many aspects of health-care practice and provision as well as social changes.4 The trend in falling home death rate has continued despite the rise in community palliative care services in the UK over the last 20 years. In line with the all-pervading choice agenda, health care professionals are increasingly expected to ascertain a patient's choice about preferred place of death, record it and aim to deliver it. Little is known about how health-care professionals elicit patients' preferences and the extent to which eliciting such views enables them to facilitate their realization. In this paper we present an overview of the UK policy context and the published literature on preferred place of death, and examine key issues which arise for health-care professionals in exploring preferred place of death with patients. The purpose is to inform debate about the role health-care professionals play in helping patients make this most important of choices, and in enabling their preferences regarding preferred place of death to be respected.