Placing the Preferences of People with Profound Intellectual and Multiple Disabilities At the Center of End-of-Life Decision Making Through Storytelling
File version
Version of Record (VoR)
Author(s)
Voss, H
Bloomer, MJ
Griffith University Author(s)
Primary Supervisor
Other Supervisors
Editor(s)
Date
Size
File type(s)
Location
Abstract
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.
Journal Title
Research and Practice for Persons with Severe Disabilities
Conference Title
Book Title
Edition
Volume
44
Issue
4
Thesis Type
Degree Program
School
Publisher link
Patent number
Funder(s)
Grant identifier(s)
Rights Statement
Rights Statement
© The Author(s) 2019. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License, which permits unrestricted, non-commercial use, distribution and reproduction in any medium, providing that the work is properly cited.
Item Access Status
Note
Access the data
Related item(s)
Subject
Clinical sciences
Social work
Persistent link to this record
Citation
Watson, J; Voss, H; Bloomer, MJ, Placing the Preferences of People with Profound Intellectual and Multiple Disabilities At the Center of End-of-Life Decision Making Through Storytelling, Research and Practice for Persons with Severe Disabilities, 2019, 44 (4), pp. 267-279