A Race to the End: Family Caregivers' Experience of Medical Assistance in Dying (MAiD)-a Qualitative Study.
assisted dying
caregiver distress
quality of care
Journal
Journal of general internal medicine
ISSN: 1525-1497
Titre abrégé: J Gen Intern Med
Pays: United States
ID NLM: 8605834
Informations de publication
Date de publication:
03 2022
03 2022
Historique:
received:
23
02
2021
accepted:
25
06
2021
pubmed:
22
7
2021
medline:
12
3
2022
entrez:
21
7
2021
Statut:
ppublish
Résumé
The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention. The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14. Caregiver experience was examined based on qualitative, semi-structured interviews. A total of 22 caregivers of patients who had requested MAiD were interviewed. Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology. The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles. The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.
Sections du résumé
BACKGROUND
The June 2016 legalization of medical assistance in dying (MAiD) provided an added layer of choice to end-of-life care in Canada. Family caregivers play an important role in patient end-of-life decision-making. They may experience unique psychological burden or distress associated with their role. However, we know little about the caregiver experience associated with patient MAiD requests and the nature of psychosocial supports caregivers require before, during, and following MAiD intervention.
OBJECTIVE
The objective of this study is to better understand the caregiver experience of MAiD within the Canadian legal landscape following Bill C-14.
DESIGN
Caregiver experience was examined based on qualitative, semi-structured interviews.
PARTICIPANTS
A total of 22 caregivers of patients who had requested MAiD were interviewed.
APPROACH
Transcripts were recorded, transcribed, and analyzed based on grounded theory methodology.
KEY RESULTS
The caregiver experience of MAiD within the legal framework was found to be understood as a "race to the end," with the ultimate goal of creating an ideal dying experience for the patient while balancing a threat to capacity that would undermine their access to MAiD. Caregivers can be described within the overarching framework as either co-runners or onlookers. Sources of caregiver distress were linked to these roles.
CONCLUSIONS
The "race to the end" theoretical model contributes new knowledge and understanding that can inform the development of tailored support services for caregivers, the impact of legislative changes on this population, and future research examining decision-making near end of life and the caregiver experience.
Identifiants
pubmed: 34287775
doi: 10.1007/s11606-021-07012-z
pii: 10.1007/s11606-021-07012-z
pmc: PMC8904693
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
809-815Informations de copyright
© 2021. Society of General Internal Medicine.
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