Cargando…

The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital

BACKGROUND: The COVID-19 pandemic and its containment measures have drastically impacted end-of-life and grief experiences globally, including those related to medical assistance in dying (MAiD). No known qualitative studies to date have examined the MAiD experience during the pandemic. This qualita...

Descripción completa

Detalles Bibliográficos
Autores principales: Tong, Eryn, Nissim, Rinat, Selby, Debbie, Bean, Sally, Isenberg-Grzeda, Elie, Thangarasa, Tharshika, Rodin, Gary, Li, Madeline, Hales, Sarah
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10261826/
https://www.ncbi.nlm.nih.gov/pubmed/37312178
http://dx.doi.org/10.1186/s12904-023-01191-8
_version_ 1785057951898140672
author Tong, Eryn
Nissim, Rinat
Selby, Debbie
Bean, Sally
Isenberg-Grzeda, Elie
Thangarasa, Tharshika
Rodin, Gary
Li, Madeline
Hales, Sarah
author_facet Tong, Eryn
Nissim, Rinat
Selby, Debbie
Bean, Sally
Isenberg-Grzeda, Elie
Thangarasa, Tharshika
Rodin, Gary
Li, Madeline
Hales, Sarah
author_sort Tong, Eryn
collection PubMed
description BACKGROUND: The COVID-19 pandemic and its containment measures have drastically impacted end-of-life and grief experiences globally, including those related to medical assistance in dying (MAiD). No known qualitative studies to date have examined the MAiD experience during the pandemic. This qualitative study aimed to understand how the pandemic impacted the MAiD experience in hospital of persons requesting MAiD (patients) and their loved ones (caregivers) in Canada. METHODS: Semi-structured interviews were conducted with patients who requested MAiD and their caregivers between April 2020 and May 2021. Participants were recruited during the first year of the pandemic from the University Health Network and Sunnybrook Health Sciences Centre in Toronto, Canada. Patients and caregivers were interviewed about their experience following the MAiD request. Six months following patient death, bereaved caregivers were interviewed to explore their bereavement experience. Interviews were audio-recorded, transcribed verbatim, and de-identified. Transcripts were analyzed using reflexive thematic analysis. RESULTS: Interviews were conducted with 7 patients (mean [SD] age, 73 [12] years; 5 [63%] women) and 23 caregivers (mean [SD] age, 59 [11] years; 14 [61%] women). Fourteen caregivers were interviewed at the time of MAiD request and 13 bereaved caregivers were interviewed post-MAiD. Four themes were generated with respect to the impact of COVID-19 and its containment measures on the MAiD experience in hospital: (1) accelerating the MAiD decision; (2) compromising family understanding and coping; (3) disrupting MAiD delivery; and (4) appreciating rule flexibility. CONCLUSIONS: Findings highlight the tension between respecting pandemic restrictions and prioritizing control over the dying circumstances central to MAiD, and the resulting impact on patient and family suffering. There is a need for healthcare institutions to recognize the relational dimensions of the MAiD experience, particularly in the isolating context of the pandemic. Findings may inform strategies to better support those requesting MAiD and their families during the pandemic and beyond. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-023-01191-8.
format Online
Article
Text
id pubmed-10261826
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher BioMed Central
record_format MEDLINE/PubMed
spelling pubmed-102618262023-06-14 The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital Tong, Eryn Nissim, Rinat Selby, Debbie Bean, Sally Isenberg-Grzeda, Elie Thangarasa, Tharshika Rodin, Gary Li, Madeline Hales, Sarah BMC Palliat Care Research BACKGROUND: The COVID-19 pandemic and its containment measures have drastically impacted end-of-life and grief experiences globally, including those related to medical assistance in dying (MAiD). No known qualitative studies to date have examined the MAiD experience during the pandemic. This qualitative study aimed to understand how the pandemic impacted the MAiD experience in hospital of persons requesting MAiD (patients) and their loved ones (caregivers) in Canada. METHODS: Semi-structured interviews were conducted with patients who requested MAiD and their caregivers between April 2020 and May 2021. Participants were recruited during the first year of the pandemic from the University Health Network and Sunnybrook Health Sciences Centre in Toronto, Canada. Patients and caregivers were interviewed about their experience following the MAiD request. Six months following patient death, bereaved caregivers were interviewed to explore their bereavement experience. Interviews were audio-recorded, transcribed verbatim, and de-identified. Transcripts were analyzed using reflexive thematic analysis. RESULTS: Interviews were conducted with 7 patients (mean [SD] age, 73 [12] years; 5 [63%] women) and 23 caregivers (mean [SD] age, 59 [11] years; 14 [61%] women). Fourteen caregivers were interviewed at the time of MAiD request and 13 bereaved caregivers were interviewed post-MAiD. Four themes were generated with respect to the impact of COVID-19 and its containment measures on the MAiD experience in hospital: (1) accelerating the MAiD decision; (2) compromising family understanding and coping; (3) disrupting MAiD delivery; and (4) appreciating rule flexibility. CONCLUSIONS: Findings highlight the tension between respecting pandemic restrictions and prioritizing control over the dying circumstances central to MAiD, and the resulting impact on patient and family suffering. There is a need for healthcare institutions to recognize the relational dimensions of the MAiD experience, particularly in the isolating context of the pandemic. Findings may inform strategies to better support those requesting MAiD and their families during the pandemic and beyond. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-023-01191-8. BioMed Central 2023-06-13 /pmc/articles/PMC10261826/ /pubmed/37312178 http://dx.doi.org/10.1186/s12904-023-01191-8 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Tong, Eryn
Nissim, Rinat
Selby, Debbie
Bean, Sally
Isenberg-Grzeda, Elie
Thangarasa, Tharshika
Rodin, Gary
Li, Madeline
Hales, Sarah
The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital
title The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital
title_full The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital
title_fullStr The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital
title_full_unstemmed The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital
title_short The impact of COVID-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital
title_sort impact of covid-19 on the experiences of patients and their family caregivers with medical assistance in dying in hospital
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10261826/
https://www.ncbi.nlm.nih.gov/pubmed/37312178
http://dx.doi.org/10.1186/s12904-023-01191-8
work_keys_str_mv AT tongeryn theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT nissimrinat theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT selbydebbie theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT beansally theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT isenberggrzedaelie theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT thangarasatharshika theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT rodingary theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT limadeline theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT halessarah theimpactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT tongeryn impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT nissimrinat impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT selbydebbie impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT beansally impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT isenberggrzedaelie impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT thangarasatharshika impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT rodingary impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT limadeline impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital
AT halessarah impactofcovid19ontheexperiencesofpatientsandtheirfamilycaregiverswithmedicalassistanceindyinginhospital