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

Palliat Support Care. 2020 Aug;18(4):425-430. doi: 10.1017/S1478951519000865.

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 planning; Cross-cultural comparison; Focus groups; Health personnel; Qualitative research.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Advance Care Planning / statistics & numerical data
  • Asian People
  • Attitude of Health Personnel
  • Female
  • Focus Groups / methods*
  • Focus Groups / statistics & numerical data
  • Health Personnel / psychology*
  • Health Personnel / statistics & numerical data
  • Humans
  • Male
  • Patient Participation / methods
  • Patient Participation / psychology*
  • Patient Participation / statistics & numerical data
  • Personal Autonomy*
  • Qualitative Research
  • Singapore
  • Terminal Care / methods
  • Terminal Care / psychology
  • Terminal Care / standards