Sumytra Menon1, Marijke C Kars2, Chetna Malhotra3, Alastair V Campbell4, Johannes J M van Delden2. 1. Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore. Electronic address: sumy.menon@nus.edu.sg. 2. Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands. 3. Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore, Singapore. 4. Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
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.
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.
Authors: Cheng-Pei Lin; Jen-Kuei Peng; Ping-Jen Chen; Hsien-Liang Huang; Su-Hsuan Hsu; Shao-Yi Cheng Journal: Int J Environ Res Public Health Date: 2020-10-29 Impact factor: 3.390
Authors: Diah Martina; Olaf P Geerse; Cheng-Pei Lin; Martina S Kristanti; Wichor M Bramer; Masanori Mori; Ida J Korfage; Agnes van der Heide; Judith Ac Rietjens; Carin Cd van der Rijt Journal: Palliat Med Date: 2021-09-06 Impact factor: 4.762