Advance care planning in a multi-cultural family-centric community : a qualitative study of healthcare professionals', patients' and caregivers' perspectives

Article

MENON, Sumytra | KARS, Marijke | MALHOTRA, Chetna | CAMPBELL, Alastair V. | VAN DELDEN, J. J. M.

CONTEXT: Advance care planning has been shown to improve end-of-life care but it was developed in the USA 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 advance care planning in a multi-cultural 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 healthcare settings across the country. RESULTS: The participants are genuinely anxious about the implementation of advance care planning. They had positive and negative expectations of advance care planning. Many were confused about the legal framework for healthcare decision-making and expected advance care planning to be of limited value because family members, rather than the patient, were usually the key decision-makers. CONCLUSION: A nuanced approach to advance care planning which considers the family network is required in multi-cultural 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 advance care planning to promote its acceptance in such communities.

http://dx.doi.org/10.1016/j.jpainsymman.2018.05.007

Voir la revue «JOURNAL OF PAIN AND SYMPTOM MANAGEMENT»

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