Elsevier

Social Science & Medicine

Volume 67, Issue 7, October 2008, Pages 1113-1121
Social Science & Medicine

Older people's views of a good death in heart failure: Implications for palliative care provision

https://doi.org/10.1016/j.socscimed.2008.05.024Get rights and content

Abstract

Palliative care in the UK has been developed to meet the needs of predominantly middle aged and younger old people with cancer. Few data are available regarding the extent to which services respond to the specific needs of an older group of people with other illnesses. This paper draws on in-depth interviews conducted with 40 people (median age 77) with advanced heart failure and poor prognosis to explore the extent to which older people's views and concerns about dying are consistent with the prevalent model of the ‘good death’ underpinning palliative care delivery. That prevalent model is identified as the “revivalist” good death. Our findings indicate that older people's views of a ‘good death’ often conflict with the values upon which palliative care is predicated. For example, in line with previous research, many participants did not want an open awareness of death preceded by acknowledgement of the potential imminence of dying. Similarly, concepts of autonomy and individuality appeared alien to most. Indeed, whilst there was evidence that palliative care could help improve the end of life experiences of older people, for example in initiating discussions around death and dying, the translation of other aspects of specialist palliative care philosophy appear more problematic. Ultimately, the study identified that improving the end of life experiences of older people must involve addressing the problematised nature of ageing and old age within contemporary society, whilst recognising the cohort and cultural effects that influence attitudes to death and dying.

Section snippets

Background

Whilst death in the West now, typically, occurs in old age, little has been written either theoretically or empirically in the academic literature about the relationship between ageing and dying. Death fits uneasily with the focus on successful ageing that dominates social gerontology and research on end of life issues has primarily been conducted within a specialist palliative care context, where patients who receive treatment predominantly have cancer and are best categorised as “younger old”

Palliative care and the “revivalist” good death

A commonly proposed solution to address deficiencies in end of life care is the expansion of specialist palliative care outside its traditional remit of cancer care to address the needs of people dying from other conditions. This has particular relevance to older people because the majority of those dying from chronic degenerative diseases other than cancer are aged 65 years and older (National Statistics, 2003). Such an expansion would create demands on staffing mix and skill levels as these

Methods

More detailed information about the methods employed in this study and strategies to involve ill older people in research can be found in another publication (Barnes et al., 2005). To summarize, the overall aim of the study was to explore the palliative care needs of older people with heart failure. To this end, 542 people aged >60 years were recruited from 16 General Practice (GP) surgeries from two urban settings (in the North of the country) and two more rural locations (in the South).

Ethical issues

Ethical approval for this study was obtained from Cardiff Multi-Centre Research Ethics Committee. We were aware that discussions of death and dying had to be handled sensitively as they are not topics that some older people feel comfortable to discuss (Seymour et al., 2005). Moreover, as identified earlier, knowledge of prognosis is limited amongst people with heart failure, meaning that the introduction of issues related to death and dying in the interviews had to be very carefully managed.

Analysis

With the consent of the interviewee, interviews were tape-recorded and transcribed verbatim. Two researchers read the transcripts individually (MG and SB), and independently noted down the core themes that emerged. Notes were cross-compared and any discrepancies decided by consensus. Each researcher then took the lead to identify sub-themes (MG analysed themes discussed in this paper). The data analysis programme NUDIST was used to assist this process. The coding frame developed was grounded in

Findings: views of the ‘good death’

The findings are summarised below in relation to revivalist ideals of a ‘good death’ (Clark, 2002: 907).

Discussion

We will structure this discussion around the key elements of the revivalist good death.

Study limitations

Certain limitations of this study must be acknowledged. Firstly and perhaps most significantly, not all participants discussed death and dying, limiting the amount of data available. However, this was viewed as a finding in itself and it was not considered ethical to ask about such issues directly for reasons outlined above. For similar reasons, discussions around these topics were relatively unstructured, responding to the direction in which the participant took the interview. Therefore, it

Conclusion

This study of older people with heart failure has identified that the translation of aspects of specialist palliative care philosophy, and in particular of the revivalist good death, are problematic for this group of people. Many participants did not want an open awareness of death preceded by acknowledgement of the potential imminence of dying. Similarly, concepts of autonomy and individuality, so crucial to the revivalist ‘good death’, appeared alien to most.

This research underlines the

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    We would like to thank all interview participants for their time and the practices from which we recruited patients for their assistance.

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