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Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals

Published online by Cambridge University Press:  08 November 2019

Oindrila Dutta Open the ORCID record for Oindrila Dutta [Opens in a new window] ,
Priya Lall Open the ORCID record for Priya Lall [Opens in a new window] ,
Paul Victor Patinadan Open the ORCID record for Paul Victor Patinadan [Opens in a new window] ,
Josip Car Open the ORCID record for Josip Car [Opens in a new window] ,
Chan Kee Low ,
Woan Shin Tan Open the ORCID record for Woan Shin Tan [Opens in a new window]  and
Andy Hau Yan Ho Open the ORCID record for Andy Hau Yan Ho [Opens in a new window]
Oindrila Dutta
Affiliation:
Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore
Priya Lall
Affiliation:
School of Geography, Queen Mary University of London, London, UK
Paul Victor Patinadan
Affiliation:
Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore
Josip Car
Affiliation:
Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore
Chan Kee Low
Affiliation:
Economics Program, School of Social Sciences, Nanyang Technological University, Singapore
Woan Shin Tan
Affiliation:
Health Services & Outcomes Research Department, National Healthcare Group, Singapore
Andy Hau Yan Ho*
Affiliation:
Psychology Program, School of Social Sciences, Nanyang Technological University, Singapore Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore The Palliative Care Centre for Excellence in Education and Research (PalC), Singapore
*
Author for correspondence: Andy Hau Yan Ho, 14 Nanyang Drive, HSS-04-03, Nanyang Technological University, Singapore637332. E-mail: andyhyho@ntu.edu.sg
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Abstract

Objectives

Asia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients’ autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled.

Methods

Guided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals’ attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis.

Results

The extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices.

Significance of results

Healthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

Keywords

Advance care planningCross-cultural comparisonFocus groupsHealth personnelQualitative research
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Special Issue 4: Palliative and Supportive Care During The COVID-19 Pandemic , August 2020 , pp. 425 - 430
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Copyright
Copyright © Cambridge University Press 2019

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