Original photo by Heather Mount via Unsplash

Roundtable: End-Of-Life-Care and Limits of Patient Agency

Tue 5 May 2020

ONLINE, Twitter

This roundtable will be conducted on Twitter #HMAeolc @CRASSHlive

Summary:
In a context of bodily decline at the end of life, formalising patient wishes provides a way to continue to enact and preserve patient agency. But is facilitating choice so easy? In this roundtable we draw from sociology and anthropology to explore the limits of patient agency in end-of-life care, focusing on the role of the individual patient choices in a context of relational decision-making and moral claims as to the value of life with dementia.

Abstracts:
Erica Borgstrom (Open University)
'Choice in End-Of-Life Care: How Much Choice Do Patients Have?'

Choice in end-of-life care policy is widely lauded and tightly bound. Some topics are excluded from patient decision-making, others so prescribed as to make decisions irrelevant, and yet others so priortised they discount pertinent patient wishes. Choice is also often unhelpfully cast as individual patient decision-making, missing the relational aspects of care delivery and the priorities of the individual outside of their patient role. Drawing on ethnographic observations of UK end-of-life care practice and policy, Erica explores the problem of choice at the end of life.

Natashe Lemos Dekker (University of Amsterdam)
'Moral Frames for Lives Worth Living: Managing the End of Life With Dementia'

In this presentation, I pay attention to the voices of people with dementia and their family members who consider the end of life with dementia undignified and who may seek possibilities for allowing death to be hastened, or, as I address, to be welcomed. This reflects broader negative representations of the end of life with dementia that carry moral claims as to the value of life with dementia. Drawing from ethnographic fieldwork in nursing homes in The Netherlands, I demonstrate how such moral framing may form the background against which decisions are made. As family members are often the ones who need to make decisions regarding the end of life, I explore how they welcomed the death of a loved one with dementia. I argue that welcoming death is not an act of indifference but can be seen as a form of care.

Cost: free