Elsevier

Social Science & Medicine

Volume 47, Issue 5, 1 September 1998, Pages 565-579
Social Science & Medicine

Place of death and access to home care services: are certain patient groups at a disadvantage?

https://doi.org/10.1016/S0277-9536(98)00115-4Get rights and content

Abstract

Research indicates that fewer people are able to die at home than would wish to do so. Furthermore the ability to die at home is unequally distributed depending on patient characteristics. Unless factors associated with home deaths are identified and interventions are targeted accordingly, further general improvements in care support may only help those already at an advantage. This paper reviews research investigating the relation between patient characteristics and home deaths and considers whether these variables influence place of death because they are associated with differential access to services, focusing on access to palliative home care. Patients with informal carer support were both more likely to die at home and to access palliative home care. Provision of home care did not remove the dependence on informal carers in achieving home death, however. An important target in improving home death rates is therefore better support for informal carers overall. Older patients were both less likely to die at home and to access home care. Once in home care they no longer were less likely to die at home. Although age related needs require consideration, improved access to home care is therefore likely to increase home deaths for older people. Women were less likely to die at home than men, yet younger women may be more likely to access home care. There is some evidence to suggest that men were less efficient as carers, which may help explain why women were less likely to achieve home deaths, while making their referral to home care more likely. While home care may help redress the gender imbalance, men may also need to be encouraged and enabled to take on the carer role. Cancer patients in higher socioeconomic groups were both more likely to die at home and to access home care. Hence home deaths may increase by improving access for lower socioeconomic groups to the services available.

Introduction

Approximately 25% of people in the U.K. currently die at home (Seale and Cartwright, 1994) and lower percentages have been cited for cancer deaths in U.S.A. and Australia (Hunt and McCaul, 1996). However, research suggests that death at home is preferred by one half or more of terminally ill patients (Dunlop et al., 1989; Townsend et al., 1990), by a majority of the general public (Charlton, 1991; Toscani et al., 1991; Ashby and Wakefield, 1993) and primary care professionals (Cartwright, 1991). Bereaved informal carers are also more likely to state that the place of death was right (Ward, 1987; Addington-Hall et al., 1991) and suffer less distress (Catalan-Fernandez et al., 1991) if the patient died at home rather than in hospital. There is therefore an imbalance between what primary care support is able to provide and what patients, carers, health professionals and the public want. However, access to palliative home care services and ability to die at home is unequally distributed and further general increases in palliative care support may mainly help those who are already at an advantage. This paper summarises what is known about differences in death at home and access to palliative home care in order to identify target groups for further research and intervention.

The paper reviews research relating to home deaths and access to palliative home care for adults. Studies were identified through the databases Medline Express 1968–1997 and SERLINE on SilverPlatter 1997 and by manually following up references cited in identified papers. The search terms used were “place” or “location of death” and “terminal” or “palliative” “home care” or “domiciliary care”. The review was limited to English language papers and therefore mainly contains research conducted in the U.K., the U.S.A. and Australia. However, papers from Canada, Italy, Sweden, Israel and Switzerland are included. The results are therefore restricted to the historico-cultural context of Europe, North America and Australia in recent decades. Aries (1981)paints quite different pictures of death during the development of western civilisation, and death in other cultures today may also be quite different in form and meaning to the “hidden death” of the late twentieth century “European” model. The review excluded studies conducted on patients identified through hospital specialist oncology services as these patients probably represent a selective subset of the cancer population, the particular characteristics of which were difficult to determine. For instance, only 38% of lung cancer patients in a U.K. region had been in contact with oncology services (Sanderson et al., 1992). All other studies which consider patient or carer variables associated with death at home or access to palliative home care were included, regardless of study methodology.

The paper first identifies characteristics of patients dying at home for the population in general and cancer patients in particular. It then considers characteristics of cancer patients referred to palliative home care teams and place of death for cancer patients under home care, with the aim of assessing whether cancer patients with certain characteristics tend to die at home because they have better access to palliative home care, rather than because of their characteristics per se. Similar literature on home care for non-cancer patients was not found using our search strategy. The home setting is compared to other care settings overall, but data relating to differences in proportions of deaths in different inpatient settings are not considered. Table 1, Table 2, Table 3, Table 4 include all variables investigated in the studies relating to palliative home care access and home deaths.

Section snippets

Studies investigating place of death both for cancer and non-cancer patients

Studies identified (Table 1) suggest the importance of informal carer support in facilitating home deaths. Patients who lived with someone, were married or had a partner were more likely to die at home than those who did not (Cartwright et al., 1973; Clifford et al., 1991; Hunt et al., 1991; Seale and Cartwright, 1994). Only one study found that divorced patients were more likely to die at home than others (Polissar et al., 1987). The identity of the informal carer mattered. If the wife was the

Studies investigating cancer patients' place of death

Seale (1991)notes that cancer patients are different from other disease groups. They tend to die younger and are therefore more likely to have a living spouse and other living relatives. Age related symptoms such as mental confusion and long term disability are less common. Furthermore, the incidence, duration, intensity and type of symptoms follow a different course and a terminal phase can be more easily distinguished. The variables related to place of death for cancer patients may therefore

The effect of services on place of death

Referral to palliative home care services is likely to be a contributory factor towards home death. Indeed, users of home care services are more likely to die at home than other patients (Zimmer et al., 1984; Greer et al., 1986; Gray et al., 1987; Komesaroff et al., 1989; Moinpour and Polissar, 1989; Dunphy and Amesbury, 1990; Costantini et al., 1993; Sessa et al., 1996). However, the type of home care matters. Patients receiving home care attached to an inpatient service are considerably less

Studies investigating cancer patients' likelihood of being referred to palliative home care

The studies reviewed make one of three types of comparison (Table 3): patients referred to hospices which provide home care only are compared with patients referred to hospices with beds (which may also provide some home care), patients referred to the home care branch of a hospice are compared with those referred to its inpatient branch, or patients referred to home care are compared with some or all of the remaining terminal cancer population. Results from these comparisons will all be

Studies investigating place of death for cancer patients under palliative home care

As the same variables often predict referral to home care and dying at home, it may be admission to palliative home care rather than these variables per se which affects place of death. This section considers place of death of patients who have been admitted to home care, to investigate whether these variables still have an impact on place of death or appear to be cancelled out by home care. Gender showed no relationship or an opposite relationship with home care admission compared with place

Summary and discussion

Research reviewed in this paper shows that both the likelihood of dying at home and of being admitted to palliative home care depend on patient characteristics. Some of these characteristics relate to clinical variables and support requirements and may justify differential treatment. However, other variables suggest that the opportunity to access home care and achieving home death are unevenly distributed.

During this century there has been a decrease in the proportion of deaths occurring at

Acknowledgements

The work undertaken for this review was made possible through funding from the Elizabeth Clark Charitable Trust and the NHS R&D Programme Primary/Secondary Care Interface, although the views expressed are the authors' and may not be those of either organisation.

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