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

Abstract

Background 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. Methods 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. Results 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. Conclusions 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.

Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities

“…17 Like the general population, increased anxiety and distress can be experienced by the person with ID when information is withheld, even if well-intentioned. 18 Caregivers and family members may underestimate or overestimate people with ID's conceptual understanding of death and not fully appreciate behavioral expressions due to issues such as grief. 19,20 PC clinicians possess many of the skills necessary to facilitate difficult conversations.…”

“…HCPs, families, and caregivers may, often in well-meaning attempts to protect, avoid discussing illness or EOL with people with ID for fear of psychological harm or inability to comprehend. 18 Such misconceptions can have dire outcomes, including over and undertreatment in healthcare settings and exclusion from advance care planning. 18,39 In addition, unclear communication, and overreliance on surrogate decision-makers put individuals with ID at risk of having EOL decisions made for them rather than with them.…”

“…18 Such misconceptions can have dire outcomes, including over and undertreatment in healthcare settings and exclusion from advance care planning. 18,39 In addition, unclear communication, and overreliance on surrogate decision-makers put individuals with ID at risk of having EOL decisions made for them rather than with them. 40 When people with ID are not informed about the illness or death of a person with whom they have a close relationship, they can be denied the opportunity to prepare, have meaningful interactions, and say goodbye.…”

“…41 Research has demonstrated that when supported properly, talking about EOL does not cause psychological harm and can decrease anxiety for people with ID. 18 Those seeking to protect the person with ID from 'bad news' must first recognize their own discomfort to move beyond fear of unknown reactions. How to Break Bad News to People with Intellectual Disabilities: A guide for carers and professionals is a book from Professor Irene Tuffrey-Wijne 41 that offers practical information on how to improve difficult conversations with people with ID.…”

Specialist palliative care staff’s varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews

“…59 Protectionism and incorrect assumptions about the person's capacity can have the unintended effect of excluding people with intellectual disability from their own end-of-life care, a harmful 24 and counterproductive outcome. 21 Current evidence suggests that having these conversations with people with intellectual disability does not lead to any adverse and enduring distress 60 and may instead be beneficial. 18,20,21 The moral tension between the need to prevent harm and the person's right to autonomy 61 can be complex.…”