Social science & medicine Dec 2007 (epub: 14 Sep 2007), vol. 65, no. 11

The role of the bioethicist in family meetings about end of life care.
p. 2328-41
Watkins-Liza-T, Sacajiu-Galit, Karasz-Alison.
Abstract
There has been little study of the content of bioethicists' communication during family meeting consultations about end of life care. In the literature, two roles for bioethicists are usually described: the consultant role, in which bioethicists define and support ethical principles such as those enshrined in the rational choice model; and the mediator role, which focuses on the enhancement of communication in order to reduce conflict. In this study, we use observational data to explore how bioethicists support the practice of decision making during family meetings about end of life care. In a study conducted in the Bronx, New York, USA, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves. Bioethics consultants were present during five of those meetings. Although bioethicists referred to the rational choice decision-making hierarchy, we did not see the systematic exploration described in the literature. Rather, our data show that bioethicists tended to employ elements of the rational model at particular turning points in the decision-making process in order to achieve pragmatic goals. As mediators, bioethicists worked to create consensus between family and staff and provided invaluable sympathy and comfort to distressed family members. We also found evidence of a context- dependent approach to mediation, with bioethicists' contributions generally supporting staff views about end of life care. Bioethicists' called to consult on family meetings about end of life care do not appear to adhere to a strict interpretation of the official guidelines. In order to negotiate the difficult terrain of end of life decision making, our data show that bioethicists often add a third role, persuader, to official roles of consultant and mediator.

A critical examination of home care: end of life care as an illustrative case.
p. 2317-27
Exley-Catherine, Allen-Davina.
University of Newcastle upon Tyne, Newcastle upon Tyne, UK. catherine.exley@ncl.ac.uk.
Abstract
Drawing on end of life care as an illustrative case, this paper critically examines the provision of care in the home, identifying a number of inherent tensions. For 60 years the hospital has been the preferred site of care. However, the UK caring division of labour is currently undergoing a process of (re)domestication and the provision of home care is increasingly regarded as a 'gold standard' for the organisation of care, in institutional and domestic contexts. In this paper we argue that while 'home care' policies serve a range of professional and political agendas, they contain unacknowledged contradictions and strains, creating challenges for both family and professional carers. The realities of home care are examined through reconceptualising qualitative data generated from three research projects concerned with dying in the community. We argue that, whilst previous work has highlighted the burdens the redomestication of care places upon carers, home care philosophies and policies have led to over-romanticised notions of care which privilege the value of caring relationships without acknowledging the dynamic interaction of such social relationships with the actual work of caring. Moreover, such policy trends have created a nexus of social expectations and obligations for which modern society is unprepared. With reference to both end of life care, and home care more widely, we argue that health care planners and professionals need to think more critically about the way care is delivered. Home is not merely about a physical space, but the social and emotional relationships therein. Good 'home care,' characterised by attention to patient-centred needs and flexible in design and scope, does not have to be located within the private sphere; relationships may actually be maintained and nurtured by enabling people to have a realistic choice of care in an institution.