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“I decide myself”- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning
BACKGROUND: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients’ treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asi...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8213132/ https://www.ncbi.nlm.nih.gov/pubmed/34143798 http://dx.doi.org/10.1371/journal.pone.0252598 |
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author | Lall, Priya Dutta, Oindrila Tan, Woan Shin Patinadan, Paul Victor Kang, Natalie Q. Y. Low, Chan Kee Car, Josip Ho, Andy Hau Yan |
author_facet | Lall, Priya Dutta, Oindrila Tan, Woan Shin Patinadan, Paul Victor Kang, Natalie Q. Y. Low, Chan Kee Car, Josip Ho, Andy Hau Yan |
author_sort | Lall, Priya |
collection | PubMed |
description | BACKGROUND: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients’ treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers’ experiences with the ACP programme. METHOD: We conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents’ experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach. RESULTS: Participants’ narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents’ acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents’ choice of care; c) Choice of PDM, considerations shaping respondents’ choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants’ decision-making processes. Respondents’ continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs. CONCLUSION: The directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death. |
format | Online Article Text |
id | pubmed-8213132 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
spelling | pubmed-82131322021-06-29 “I decide myself”- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning Lall, Priya Dutta, Oindrila Tan, Woan Shin Patinadan, Paul Victor Kang, Natalie Q. Y. Low, Chan Kee Car, Josip Ho, Andy Hau Yan PLoS One Research Article BACKGROUND: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients’ treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers’ experiences with the ACP programme. METHOD: We conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents’ experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach. RESULTS: Participants’ narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents’ acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents’ choice of care; c) Choice of PDM, considerations shaping respondents’ choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants’ decision-making processes. Respondents’ continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs. CONCLUSION: The directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death. Public Library of Science 2021-06-18 /pmc/articles/PMC8213132/ /pubmed/34143798 http://dx.doi.org/10.1371/journal.pone.0252598 Text en © 2021 Lall et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
spellingShingle | Research Article Lall, Priya Dutta, Oindrila Tan, Woan Shin Patinadan, Paul Victor Kang, Natalie Q. Y. Low, Chan Kee Car, Josip Ho, Andy Hau Yan “I decide myself”- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning |
title | “I decide myself”- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning |
title_full | “I decide myself”- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning |
title_fullStr | “I decide myself”- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning |
title_full_unstemmed | “I decide myself”- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning |
title_short | “I decide myself”- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning |
title_sort | “i decide myself”- a qualitative exploration of end of life decision making processes of patients and caregivers through advance care planning |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8213132/ https://www.ncbi.nlm.nih.gov/pubmed/34143798 http://dx.doi.org/10.1371/journal.pone.0252598 |
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