Place of death: preferences among cancer patients and their carers

Abstract

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining. The study design involved an in-depth qualitative interview with each patient soon after referral to the study, followed by an interview some 4 weeks later and subsequent tracking interviews by telephone at 2–4 week intervals until death occurred. Interviews were also conducted with main coresident carers soon after patient referral to the study and again in the post-bereavement period. Thirteen factors were identified as shaping the place of death preference of patients and carers. These are organised into four thematic domains: the informal care resource, management of the body, experience of services, and existential perspectives. In documenting these factors, this paper adds significantly to current knowledge on the factors that shape place of death preference, a field of enquiry acknowledged to be underdeveloped (J. Palliative Med. 3 (2000) 287). More importantly, it uncovers some of the reasons that underpin these preferences. Our research revealed a much stronger preference for deaths in a hospice than had been anticipated, leading us to take a qualified stance on the current policy drive in favour of home deaths by those charged with delivering UK cancer and palliative care services.

Introduction

Where would you prefer to die—at home, in hospital, in a hospice, or elsewhere? Posing such a question presents us all with difficulties, however aware we might be that death is close at hand. Cultural mores discourage such a direct question, and the sequestration of death in contemporary society such that it is routinely hidden from view and medicalised (Giddens, 1991), means that we are ill prepared to consider the when and where of dying. If we have the luxury of good health and the prospect of many years left to live, the probability is that, if pressed, we would express a preference to die at home, attended to by those who love us (Higginson & Sen-Gupta, 2000). In the face of serious and especially terminal illness, we would be likely to pay closer attention to where we would like to end our days, but also to be more cognisant of the circumstances that might play a role in determining the outcome. In that context, would dying at home as opposed to dying in hospital or in a hospice continue to be our preference? If not, why not?

This paper seeks to address such matters by reporting the findings of a recent study undertaken in the Morecambe Bay (MB) area in north-west England on the factors that shaped preference for place of death among 41 terminally ill cancer patients and 18 of their carers. In this research, matters of preference for place of death were explored sensitively through interviews with patients and their carers, involving discussion of the illness, care arrangements, and preparations for the future. All patients had an ‘open awareness’ (Seale, Addington-Hall, & McCarthy, 1997) of their terminally ill state. This qualitative engagement with people struggling with end of life concerns has brought to light a range of factors that shape place of death preference. In documenting these factors, this paper adds significantly to understanding about not just the ‘what’ but also the ‘why’ of preferences—something missing from the literature on place of death.

The study was undertaken at a time when greater impetus was given to a long-term UK health-care policy goal of increasing the proportion of cancer deaths that could occur at home (Clark & Seymour, 1999). This policy is presented as a matter of meeting patient choice rather than as anything to do with other considerations such as reducing service costs. For example, the NHS Cancer Plan (Department of Health, 2000), while focusing on cancer treatment services, acknowledged that although most patients with advanced cancer would prefer to die at home only about a quarter are able to do so. The plan pledged an extra £50 million investment a year by 2004 in hospices and specialist palliative care, with an explicit emphasis on improving the capacity of services to support end of life care in the community. In 2001, the Department of Health announced the investment of an extra £2 million to educate and support district and community nurses in providing care to enable more patients with advanced cancer to remain at home, if that was their wish (DoH, 2001). Subsequent official announcements on the funding of specialist palliative care services have underlined this intention. These developments have occurred in the context of a broader health service policy commitment to listening to the views of service users, with repeated political promises to be responsive to the expressed needs of patients and their families (Department of Health (1997), Department of Health (1998); Small & Rhodes, 2000).

Against this background, the idea that ‘home is the best place to die’ has taken a firm hold in the minds of many service providers and practitioners (Seale et al., 1997). From this perspective it follows that services should be reconfigured to boost the provision of specialist palliative care in community settings. Our research project grew out of these concerns among service commissioners and providers in the MB locality in the late 1990s. A service-instigated review of place of death patterns for cancer patients in the geographical patch covered by the former Morecambe Bay Health Authority had revealed that compared with averages for England and Wales the locality had a high proportion of deaths in hospice, a low proportion of deaths in hospital, and a similarly low proportion of deaths at home.¹ The question was posed: should there be a shift of specialist palliative care resources from the hospice sector to the community in the light of national research evidence that most cancer patients would prefer to die at home? To the credit of local health services, it was decided not to take precipitate action but to await the findings of our NHS funded research project on patient and carer preferences for place of death (Thomas, Morris, & Gatrell, 2003).