The place of death of cancer patients: can qualitative data add to known factors?

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Abstract

Research on the distribution of cancer deaths by setting—hospital, hospice, home, other—is longstanding, but has been given fresh impetus in the UK by policy commitments to increase the proportion of deaths occurring in patients’ homes. Studies of factors associated with the location of cancer deaths fall into two main categories: geo-epidemiological interrogations of routinely collected death registration data, and prospective and retrospective cohort studies of terminally ill cancer patients. This paper summarises the findings of these studies and considers the place of death factors that are generated in semi-structured interviews with 15 palliative care service providers working in the Morecambe Bay area of north-west England. These qualitative data are found not only to confirm and considerably enrich understanding of known factors, but also to bring new factors into view. New factors can be grouped under the headings: service infrastructure, patient and carer attitudes, and cultures of practice. Such an approach provides useful information for policy makers and practitioners in palliative care.

Introduction

In the UK, the National Health Service (NHS) Cancer Plan (Department of Health (DoH), 2000) brought a new impetus to academic research on the place of death of cancer patients. While research on the distribution of cancer deaths by setting—hospital, hospice, home, other—is longstanding, the policy directives and extra investment currently percolating through cancer and palliative care services has given it greater relevance (DoH, 2001). There is a policy commitment to increase the proportion of deaths occurring in home settings, presently standing at just under a quarter of all cancer deaths (Ellershaw & Ward, 2003). This is deemed important because evidence suggests that over 50% of cancer patients would prefer to die at home (Higginson & Sen–Gupta, 2000). These developments occur in the context of a long-term secular trend away from home death in the UK (Clark & Seymour, 1999).

Research on the ‘actual place of death’ of cancer patients has sought to identify the factors associated with, and predictive of, its location, with predictors of home deaths a particular focus. Much literature on this topic is quantitative in character and this paper considers what qualitative data might add. It suggests that qualitative data can enrich our understanding, by confirming known factors and by bringing into view an additional set of factors associated with place of death. This holds a promise of the enrichment of the policy and practice evidence base in palliative care.

The type of qualitative data brought to bear in this discussion is new to place of death research because it analyses palliative care professionals’ reflections on their work in general. The findings reported here were generated as one element in a two-year (2000–2002) longitudinal observational study, funded by the NHS, on the place of death of cancer patients in the Morecambe Bay (MB) area—a former Health Authority (HA) district in north-west England. The data were generated in semi-structured interviews with 15 individuals involved in palliative care services in the MB area (referred to as ‘interviews with professionals’ for brevity). All had a close understanding of palliative care services in their locality, and 13 possessed extensive experience of working directly with terminally ill cancer patients and their informal carers. While the sample is small and confined to a single geographical area, the interviews produced a rich and internally consistent account of the factors that influence place of death.

Section snippets

The literature on actual place of death among cancer patients

In the UK and USA, interest in predictors of place of death has grown in the context of long-term trends away from home towards institutionally located deaths. Between 1967 and 1987, the proportion of cancer deaths in hospitals in England increased from 45% to 50%, and from 5% to 18% in hospices and other institutions (Cartwright, 1991). The increase in hospice deaths is testimony to the rapid expansion and diversification of hospice services in the UK in the years following the opening of the

Methods

To describe the nature and development of specialist palliative care services in the study area, and thus to disclose the place of death options currently available, semi-structured interviews were conducted with a purposive sample of 14 professionals closely associated with palliative care services and one hospice voluntary worker. Other elements in the study, reported elsewhere, involved: (i) an interview series with terminally ill cancer patients (n=41) and their informal carers (n=18), and

Findings: factors arising from palliative care professionals’ perspectives on actual place of death among cancer patients

The professionals interviewed volunteered all of the factors associated with place of death identified in the research literature reviewed above. However, the experiential knowledge they possessed meant that their accounts went beyond being merely confirmatory. Their narratives added depth and novel dimensions to known factors and brought entirely new factors to light. Table 1 summarises the factor groupings found both in the literature and in this study, and indicates the directionality of

Discussion

Whether as front-line care providers, service managers or a volunteer, interviewees have confirmed known predictors, directed attention to fresh dimensions of these known factors, and brought to light new factors. There was a high degree of internal consistency in the professionals’ accounts. The new factors that have surfaced reflect the perspectives of key social actors in cancer death scenarios. These professionals, especially those with care delivery roles, are individuals whose daily

Conclusion

In the context of UK palliative care policy commitments to increase the proportion of cancer deaths occurring in patients’ homes, this paper has examined factors associated with the location of such deaths. The research literature on place of cancer death predictors, a predominantly quantitative research tradition, was found to comprise of two types of study: geo-epidemiological interrogations of routinely collected death registration data, and prospective and retrospective cohort studies of

Acknowledgements

Thanks are extended to the palliative care professionals who agreed to be interviewed, and to Sara Morris, the project's Research Associate, for conducting the interviews with considerable skill. The Research and Development Department, NHS Directorate of Health and Social Care North, is thanked for generously funding this research (Grant Ref: RDO/28/3/10). The author is grateful to Tony Gatrell and David Clark for their feedback on an earlier draft, and to this journal's referees for their

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