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Placing the preferences of people with profound intellectual and multiple disabilities at the center of end-of-life decision making through storytelling

journal contribution
posted on 01.01.2019, 00:00 authored by Joanne WatsonJoanne Watson, H Voss, Melissa BloomerMelissa Bloomer
With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. In response to this challenge, this article draws on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people’s expressions of preferences to be acknowledged and acted upon at the end-of-life. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of end-of-life planning.

History

Journal

Research and practice for persons with severe disabilities

Volume

44

Issue

4

Pagination

267 - 279

Publisher

SAGE Publications

Location

London, Eng.

ISSN

1540-7969

eISSN

2169-2408

Language

eng

Publication classification

C1 Refereed article in a scholarly journal