Preferences on the Timing of Initiating Advance Care Planning and Withdrawing Life-Sustaining Treatment between Terminally-Ill Cancer Patients and Their Main Family Caregivers: A Prospective Study.

Cheng-Pei Lin,Ping-Jen Chen,Shao-Yi Cheng,Hsien-Liang Huang,Jen-Kuei Peng,Su-Hsuan Hsu

doi:10.3390/ijerph17217954

Abstract

Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan. Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis. Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients’ frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress. Conclusion: Patient dyads’ preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people’s medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia–Pacific region.

Highlights

Advance care planning is a voluntary process of discussion to facilitate terminally-ill patients’goal-concordant care when they cannot speak for themselves at some point in the future.Such discussions involve all related stakeholders to encourage person-centered decision-making based on the patient’s values and preferences, and record the decisions in an advance directive to guide future care [1,2]
Given the evidence supporting family-led advance care planning discussions in Asia [6,10], we hypothesized that inconsistencies may be found between terminally-ill cancer patients and their family caregivers’ in the timing of initiating advance care planning and withdrawing life-sustaining treatments
CPR: cardiopulmonary resuscitation; ACP: advance care planning; N/A: not applicable. This is a novel study comparing the preferred timing of advance care planning initiatives and life-sustaining treatment withdrawal for terminally-ill cancer patients from the perspectives of patient and family caregiver dyads, a situation which has received little attention in Taiwan previously

Summary

Introduction

Goal-concordant care when they cannot speak for themselves at some point in the future Such discussions involve all related stakeholders (i.e., patients, family caregivers and healthcare staff) to encourage person-centered decision-making based on the patient’s values and preferences, and record the decisions in an advance directive to guide future care [1,2]. The clinical trial conducted by Tang et al [13] in Taiwan reported that family members could override the cancer patient’s right of self-determination on medical treatments, resulting in a failure of patient’s goal-concordant care provision. The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan. Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15

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