Planning for the end of life:: the views of older people about advance care statements

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Abstract

Advance statements about medical care have been heralded by some as a solution to the problem of end of life decision making for people not able to participate in discussions about their care. Since death is now most likely to occur at the end of a long life, it is important to understand the views and values which older people express in relation to these. This paper reports on a study which used focus groups to explore older people's views about advance statements and the role these might play in end of life care decisions. Participants were 32 older people or their representatives who belonged to six diverse community groups in Sheffield, UK. Advance statements were understood primarily in terms of their potential to aid personal integrity and to help the families of older people by reducing the perceived ‘burden’ of their decision making. However, concerns were expressed about the perceived link between advance care statements and euthanasia, their future applicability, and the possibility that preferences for care may change. Participants also reported worries and difficulties related to thinking about and discussing death and dying. Trust between doctor and patient, built up over time, was perceived to be important in creating an environment in which the communication necessary to underpin advance care planning could take place. Lastly, participants did not perceive that during dying they would be ready necessarily to adhere to an advance statement and ‘disengage’ from their lives. We conclude that, rather than emphasising the completion of advance statements, it may be preferable to conceptualise advance care planning as a process of discussion and review between clinicians, patients and families.

Introduction

One of the fields in which the social and personal implications of the availability of new health technologies are most clearly apparent is that of end-of-life care, for now it is possible to alter the manner, timing and place of dying that parallels preferences expressed by the dying person, the close family or professional carers. However, in spite of public demands for more openness around these issues (see for example Kirkwood, 2001), and the publication of guidelines suggesting that it is good practice to involve dying people and their family caregivers in care decisions (BMA, 2001; GMC, 2001), we know comparatively little about end of life preferences, nor do we fully understand the complexities and risks that are perceived to surround the doctor—patient or doctor—family relationship during end of life decision making. Since death, in the developed world, is now most likely to occur at the end of a long life, it is important to understand the views and values which older people express in relation to these issues. This paper reports findings from a UK study which explored this. It focuses on the discussions of 32 older participants in focus groups in which they explored advance care statements and the role these can play in end of life care and treatment decisions. Advance care statements were one of four aspects of end of life care discussed within the groups. The study, which took place in Sheffield, UK, incorporated some level of participation from groups of older people who are often excluded from research or who may be most at risk of exclusion from choices such as setting and type of care that they receive during dying: these are the very old and frail, and those from ethnic minority groups. (Morrow, 1997; Coppola, Bookwalla, & Ditto, 1999; Debate of the Age Health and Study Group, 1999).

Section snippets

Background

The management of end of life care for older people is surrounded frequently by diagnostic difficulties that make ‘dying’ difficult to predict. When it eventually becomes clear that dying is inevitable, rapidly hastening cognitive impairment and severe disability may make it impossible to ascertain with any accuracy any wishes and preferences that the dying older person may have about their care (Dunstan, 1996). Advance statements1

Methods

Eight focus group discussions were held with 32 participants recruited from six purposively selected community groups representing older people in Sheffield, UK. To ensure diversity of participation, eleven community groups were invited to take part. We followed the advice of an umbrella group ‘Better Government for Older People’ to help us to decide which groups to contact and also employed a snowballing technique to access ‘gatekeepers’ to particular groups. Invited groups fell broadly into

Discussion

The late-modern ‘ars moriendi’ (Ten Have, 2001, p. 408) places individual autonomy at centre stage and seeks mechanisms to preserve individual control in the face of what is perceived otherwise as the risk of a technologically determined and overly medicalised death. The principle of the advance statement, introduced in the last twenty five years in the USA and during the last decade in the UK, perhaps encapsulates most clearly the search for ways of preserving the influence of the individual

Conclusion

Advance statements are a technology of end of life decision-making based on particular cultural assumptions about the value of autonomy and of individual decision making. The findings presented here report discussions among a diverse sample of older people who prioritised a range of other issues in thinking about the role of advance statements in end of life care. The primary emphasis of their discussions was on the ways in which advance statements could help their families, and they tended to

Acknowledgements

We thank all the participants and community organisations for their generosity and interest in supporting this study and gratefully acknowledge funding from the Economic and Social Research Council, Grant no.: L218252047, and support from the Innovative Health Technologies Programme. An earlier version of this paper was presented to colleagues at meetings of the Association for Palliative Medicine and the Royal College of Nursing and we benefited from the comments we received at these.

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