Advance Care Planning in a Multicultural Family Centric Community: A Qualitative Study of Health Care Professionals’ Patients’ and Caregivers’ Perspectives

Abstract

Context: Advance care planning (ACP) has been shown to improve end-of-life care, but it was developed in the U.S., and most research has been conducted in western communities. Objectives: We aimed to study the attitudes and perceptions of patients with life-limiting illnesses, informal caregivers, doctors, nurses, and medical social workers regarding ACP in a multicultural family centric community. Methods: We conducted an explorative qualitative study, using focus groups and individual in-depth interviews. We used purposive sampling techniques to recruit 61 adults (15 doctors, 13 nurses, 5 medical social workers, 15 patients, and 13 caregivers) from multiple health care settings across the country. Results: The participants are genuinely anxious about the implementation of ACP. They had positive and negative expectations of ACP. Many were confused about the legal framework for health care decision-making and expected ACP to be of limited value because family members, rather than the patient, were usually the key decision makers. Conclusion: A nuanced approach to ACP that considers the family network is required in multicultural family centric communities. Policies should be reconciled to create a more consistent message that respects patients, the family, and is legally coherent. Further research could focus on adaptations of ACP to promote its acceptance in such communities.