Parents' views on medical decisions related to life and death for their ageing child with profound intellectual and multiple disabilities: A qualitative study.
Disabilities
End-of-life decisions
Medical decisions
PIMD
Quality of life
Surrogate decision-makers
Journal
Research in developmental disabilities
ISSN: 1873-3379
Titre abrégé: Res Dev Disabil
Pays: United States
ID NLM: 8709782
Informations de publication
Date de publication:
Feb 2022
Feb 2022
Historique:
received:
17
09
2021
revised:
15
12
2021
accepted:
17
12
2021
pubmed:
27
12
2021
medline:
12
1
2022
entrez:
26
12
2021
Statut:
ppublish
Résumé
The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However, little is known about how parents make such decisions for their ageing child. Explore parents' views on medical decisions related to life and death for their ageing child with PIMD. We interviewed 27 parents of persons with PIMD (≥ 15 years) and analyzed the data thematically. Parents who were convinced that their ageing child's quality of life (QoL) was good, stated that their child "deserved the same treatment as any other person". Others rejected life-prolonging treatments for their child because they believed such treatment would diminish their child's QoL. Some of the parents who thought their child's QoL was poor, mentioned that withholding treatment is only an option in a crisis situation and contemplated other options to shorten their child's life. Parents feel equipped to take on a central role in medical decisions related to life and death for their ageing child with PIMD, and desire understanding from medical professionals for their views on their child's interests, which sometimes includes physician-assisted death.
Sections du résumé
BACKGROUND
BACKGROUND
The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However, little is known about how parents make such decisions for their ageing child.
AIM
OBJECTIVE
Explore parents' views on medical decisions related to life and death for their ageing child with PIMD.
METHODS
METHODS
We interviewed 27 parents of persons with PIMD (≥ 15 years) and analyzed the data thematically.
RESULTS
RESULTS
Parents who were convinced that their ageing child's quality of life (QoL) was good, stated that their child "deserved the same treatment as any other person". Others rejected life-prolonging treatments for their child because they believed such treatment would diminish their child's QoL. Some of the parents who thought their child's QoL was poor, mentioned that withholding treatment is only an option in a crisis situation and contemplated other options to shorten their child's life.
CONCLUSIONS
CONCLUSIONS
Parents feel equipped to take on a central role in medical decisions related to life and death for their ageing child with PIMD, and desire understanding from medical professionals for their views on their child's interests, which sometimes includes physician-assisted death.
Identifiants
pubmed: 34954670
pii: S0891-4222(21)00303-6
doi: 10.1016/j.ridd.2021.104154
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
104154Informations de copyright
Copyright © 2021 The Author(s). Published by Elsevier Ltd.. All rights reserved.