"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning

Priya Lall; Oindrila Dutta; Woan Shin Tan; Paul Victor Patinadan; Natalie Q Y Kang; Chan Kee Low; Josip Car; Andy Hau Yan Ho

doi:10.1371/journal.pone.0252598

"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning

PLoS One. 2021 Jun 18;16(6):e0252598. doi: 10.1371/journal.pone.0252598. eCollection 2021.

Authors

Priya Lall^{1

2}, Oindrila Dutta³, Woan Shin Tan^{4

5}, Paul Victor Patinadan³, Natalie Q Y Kang³, Chan Kee Low⁶, Josip Car^{7

8}, Andy Hau Yan Ho^{3

7

9}

Affiliations

¹ Lincoln International Institute for Rural Health, College of Social Science, University of Lincoln, Lincoln, United Kingdom.
² London Interdisciplinary School, London, United Kingdom.
³ Psychology Programme, School of Social Sciences, Nanyang Technological University, Singapore, Singapore.
⁴ NTU Institute for Health Technologies, Interdisciplinary Graduate School, Nanyang Technological University, Singapore, Singapore.
⁵ Health Services and Outcomes Research Department, National Healthcare Group, Singapore, Singapore.
⁶ Economics Programme, School of Social Sciences, Nanyang Technological University, Singapore, Singapore.
⁷ Centre of Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore.
⁸ Global eHealth Unit, Department of Primary Care and Public Health, School of Public Health, Imperial College London, London, United Kingdom.
⁹ Palliative Care Centre for Excellence in Research and Education, Singapore, Singapore.

Abstract

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Advance Care Planning*
Aged
Aged, 80 and over
Caregivers / psychology*
Chronic Disease / psychology
Decision Making*
Female
Humans
Interviews as Topic
Male
Middle Aged
Patients / psychology*
Terminal Care
Young Adult

Grants and funding

Research for this paper was supported by the Agency for Integrated Care Singapore, which receives public funding from the Ministry of Health of the Singaporean Government. The funder has played no role in the study design; collection, analysis or interpretation of data, or preparation of the manuscript.