Elsevier

Social Science & Medicine

Volume 46, Issue 9, 1 May 1998, Pages 1111-1120
Social Science & Medicine

Special not different: general practitioners' accounts of their care of dying people

https://doi.org/10.1016/S0277-9536(97)10041-7Get rights and content

Abstract

In modern Britain the majority of terminal care occurs in people's own homes and many dying people and their carers would prefer the death itself to occur in the home. The quality of terminal care in the home and the possibility of a home death depend to a great extent upon the care provided by GPs and community nurses. This paper reports on GPs' experiences of caring for dying people and their attitudes towards such work. It is based on unstructured interviews with 25 GPs who graduated from the 1979 entry cohort to the University of Leicester medical school. The respondents were recruited via a questionnaire following up previous research with this cohort on `fear of death'. Although self-selecting, interviewees were not significantly different from those who did not volunteer for interview in any of the statistical analyses of the questionnaire data. There were a number of similarities in their accounts of their care of dying people. Common themes were that the care of dying people was important, rewarding and satisfying; that the GPs saw themselves as part of a team of carers, frequently as team co-ordinators; good working relationships with district nurses but less satisfactory relationships with hospitals and social workers; that patient and family were both recipients of care; and honesty in communication with dying people, albeit tempered. Three issues of contemporary relevance were: tensions over the role of hospice and specialist terminal care services; care of people with chronic terminal illnesses other than cancer; and the role of GPs in the social construction of bereavement.

Introduction

Although most deaths in modern Britain occur in institutional settings most terminal care1 occurs in the person's own home (Field and James, 1993; Thorpe, 1993) where general practitioners can make a significant contribution to the ease and quality of dying. The roles and attitudes of general practitioners may also be significant in realising the frequently expressed wish of patients and their “lay carers” to die in their own home. However, despite the importance of GP contributions to the care of people who are dying, there have been surprisingly few recent studies of the views and attitudes of GPs themselves towards their care of dying people, although their have been a number of studies of the views of patients and their carers (Addington-Hall et al., 1991; Fakhoury et al., 1996; Higginson et al., 1990; Hinton, 1994; Jones et al., 1993; Reilly and Patten, 1981; Seale and Cartwright, 1994; Spiller and Alexander, 1993; Sykes et al., 1992). In their influential article Rosser and Maguire (1982)argued that both the conceptual frameworks used by GPs and their structural position within health care affected their care of cancer patients. While much has changed since that time, both observations remain true and provide a rationale for the present study. Conceptually, in the U.K. in the 1990s a more “holistic” and palliative approach is likely to be taken by GPs towards the treatment of dying cancer patients, but not with other types of dying patients, where the more traditional “bio-medical” model remains dominant. Structurally, the position of GPs as the normal first point of entry to and liaison with other, more specialist, services has become more important with the increased emphasis upon community care and primary care in the British health services of the 1990s.

A number of studies have looked at how GPs viewed various aspects of their work with dying patients. Still and Todd (1986), Todd and Still (1993)paid particular attention to communication about terminal prognoses. Reflecting the practices of that period they found few GPs in their sample reporting that they tried to disclose such prognoses and some making strenuous efforts to avoid disclosure. More recent research suggests that disclosure has become more commonly accepted as preferred practice (Field, 1996; Hinton, 1994; Seale and Cartwright, 1994). A questionnaire study of London GPs (Haines and Booroff, 1986) found a significant minority reported difficulties in controlling pain of their terminally ill patients (32%) and in coping with the emotional distress of patients and relatives (45%). Between 20 and 30% reported frequent problems with support services, hospital specialists and admitting terminally ill patients to hospital. Similar problems were reported in a more comprehensive study of GPs in South Australia (Wakefield et al., 1993). In a study of rural general practice in Britain, Herd (1990)found that symptom control was the most common medical reason for hospital admission. Seale and Cartwright (1994)in their 1987 national study found that 43% of their GP respondents felt they needed more time to give to dying patients. Around a third of them had difficulty coping with their own emotional responses, and these GPs seemed most likely to have difficulty communicating with patients who were dying and their relatives and in responding to their needs. In common with other studies (Jeffrey, 1994; Lloyd-Williams and Lloyd-Williams, 1996; Macleod and Nash, 1991) they found upwards of half of the GPs wanted more training in various aspects of terminal care. Where information has been collected from both general practitioners and their patients/patients' relatives (Blyth, 1990; Kurti and O'Dowd, 1995; Reilly and Patten, 1981; Seale and Cartwright, 1994) communication and symptom control again emerge as areas of concern for clients. Blyth (1990)suggests that bereavement follow-up is also an area for concern, despite reporting that bereaved relatives did not generally regard it so. Given the concerns to extend specialist palliative care services beyond cancer patients (NCHSPCS, 1997; SMAC/SNAC, 1993) it is of interest that Kurti and O'Dowd (1995)report that 25% of the GPs in their study did not recognise such patients as requiring palliative care and that GPs had difficulty identifying palliative care needs for such patients, with negative consequences for their lay carers.

This paper reports some of the findings of a qualitative interview study of 25 GPs ten years after their graduation from medical school. It provides a broad view of their work attempting to cover issues previously addressed in the literature as well as conveying the centrality of their care of dying people to these GPs. After briefly describing the sample and methods, the GPs descriptions of their care of dying people is presented. The paper then considers three aspects of the interviews which have particular contemporary interest: the role of specialists in palliative care, the care of people dying from chronic conditions other than cancer and the GPs' “construction” of bereavement.

Section snippets

Methods

The interviews with GPs upon which this paper is based are part of a larger study. In April and June 1994 all doctors graduating from the University of Leicester medical school who had entered the school in 1979 and who could be traced and identified as practising in Britain were contacted as part of a study of their experiences in dealing with dying people since their graduation. Of the entry class of 92 students, two had failed to complete the course, one had transferred to another medical

The main elements of care

The main way in which care of patients who were dying by GPs differed from their hospital experiences was in the continuity of patient contact. Respondents stressed that they were caring for people with whom they were likely to have built up a relationship prior to the onset of the terminal illness. Furthermore, their care was embedded in family and community relationships (even in urban practices) and the patient and their family were the recipients of care, not simply the patient. The

Contemporary issues

Having provided the general context of the GPs' work with dying patients and their families, this section considers three areas of contemporary interest and debate in the U.K. and elsewhere:

  • the role of hospice and specialist palliative care services

  • the care of people with chronic terminal illnesses other than cancer

  • the role of GPs in the social construction of bereavement.

Summary

Care for people who are dying is an inevitable, if small, part of the work of medical general practitioners. The accounts of this group of GPs also suggests that although it comprised only a small proportion of their time it was nevertheless an important and integral part of their work as GPs which, for most, contributed significantly to their job satisfaction. Although dying patients were not seen as essentially different from other patients they were, nevertheless, special patients the care

Acknowledgements

Particular thanks go to the 25 General Practitioners who agreed to be interviewed both for their willingness to talk and for their co-operation in enabling the interviews to be completed in the short period of time available to me during the summer of 1994. I would also like to thank all members of the 1979 cohort who took part in the wider study and in particular Cathy Duncan and Caroline Rabbitt for their help in locating members of the year who were not listed in the Medical Register. The

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