Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

Journal of Applied Research in Intellectual Disabilities : JARID
Roger J StancliffeJosephine M Clayton

Abstract

Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings. Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly. This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.

References

Jan 2, 2003·Death Studies·David Lester, Ahmed Abdel-Khalek
Apr 2, 2003·The British Journal of Psychiatry : the Journal of Mental Science·Fiona M CuthillSally-Anne Cooper
Jan 29, 2008·Journal of Intellectual Disability Research : JIDR·P DoddJ Hillery
Aug 2, 2011·Journal of Intellectual Disability Research : JIDR·J McEvoyE Tierney
Oct 12, 2012·Journal of Applied Research in Intellectual Disabilities : JARID·Michele WieseAngela Dew
Apr 13, 2013·Journal of Applied Research in Intellectual Disabilities : JARID·Stuart Todd
Apr 13, 2013·Journal of Applied Research in Intellectual Disabilities : JARID·Irene Tuffrey-WijneJane Bernal
Apr 13, 2013·Journal of Applied Research in Intellectual Disabilities : JARID·Rachel Forrester-Jones
Oct 21, 2014·JAMA Internal Medicine·Rachelle E BernackiUNKNOWN American College of Physicians High Value Care Task Force
Dec 3, 2014·Applied Nursing Research : ANR·Teresa A SavageKaren L Kavanaugh
Dec 15, 2015·Research in Developmental Disabilities·Roger J StancliffeJosephine M Clayton
Jul 28, 2016·Journal of Applied Research in Intellectual Disabilities : JARID·Abbie KirkendallSaritha Farris
Nov 20, 2016·Journal of Intellectual Disability Research : JIDR·J McEvoyJ Quigley
Apr 6, 2017·Journal of Applied Research in Intellectual Disabilities : JARID·Nicola McKenzieSharon Brandford
May 26, 2017·Journal of Applied Research in Intellectual Disabilities : JARID·R J StancliffeJ M Clayton
Jul 13, 2017·Journal of Applied Research in Intellectual Disabilities : JARID·Ailsa J LordIan C Smith

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