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End-of-life decision making in critical illness: Perspectives of Asian parents

Published online by Cambridge University Press:  04 May 2021

Kristy Xinghan Fu Open the ORCID record for Kristy Xinghan Fu [Opens in a new window] ,
Yee Keow Chiong  and
Nicola Ngiam
Kristy Xinghan Fu*
Affiliation:
Khoo Teck Puat – National University Children's Medical Institute, National University Health System, Singapore, Singapore Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
Yee Keow Chiong
Affiliation:
Khoo Teck Puat – National University Children's Medical Institute, National University Health System, Singapore, Singapore Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
Nicola Ngiam
Affiliation:
Khoo Teck Puat – National University Children's Medical Institute, National University Health System, Singapore, Singapore Centre for Healthcare Simulation, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
*
Author for correspondence: Kristy Xinghan Fu, Department of Paediatrics, Khoo Teck Puat – National University Children's Medical Institute, NUHS, Tower Block Level 12, 1E Kent Ridge Road, Singapore 119228, Singapore. E-mail: [email protected]
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Abstract

Objective

To explore parents’ perspectives regarding end-of-life (EOL) decisions, factors and possible barriers that influence the EOL decision making process, and to understand parental preferences for communication about EOL care in an Asian population.

Method

A prospective questionnaire cohort study conducted in a university-based tertiary care hospital. 30 parents of children who had been admitted to general pediatric wards for acute ailments and/or were being followed up in general pediatric outpatient clinics after inpatient admissions or emergency department visits completed 30 interviewer-administered questionnaires. With the first 10 completed questionnaires, we sought feedback on the design of the four case vignettes and related questions. Responses to specific questions related to each case vignette were rated on a Likert scale.

Results

The majority of parents were able to comprehend and identify with the issues in the case vignettes, which allowed them to respond appropriately. Parents tended to avoid active withdrawal or withholding of life-sustaining treatment. The top three priorities for parents making EOL decisions for their children were: the chance of improvement, the presence of pain or discomfort, and information provided by healthcare staff. Parents reported that they would prefer to know immediately if their child is at risk of dying; they also preferred to get as much information as possible from the healthcare team and thought that meeting with the healthcare team before making EOL decisions was pivotal.

Significance of results

Parents place highest priorities on their child's likelihood of improvement, perception of their child's pain, and information provided by healthcare professionals in making EOL decisions.

Keywords

End-of-life careEnd-of-life decisionPalliative careParental perspectivesPediatric intensive care unit
Type
Original Article
Information
Palliative & Supportive Care , Volume 20 , Issue 2 , April 2022 , pp. 233 - 242
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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