TY - JOUR
T1 - Advance Care Planning in a Multicultural Family Centric Community
T2 - A Qualitative Study of Health Care Professionals’ Patients’ and Caregivers’ Perspectives
AU - Menon, Sumytra
AU - Kars, Marijke C.
AU - Malhotra, Chetna
AU - Campbell, Alastair V.
AU - van Delden, Johannes J.M.
N1 - Publisher Copyright:
© 2018 American Academy of Hospice and Palliative Medicine
PY - 2018/8/1
Y1 - 2018/8/1
N2 - 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.
AB - 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.
KW - Advance care planning
KW - advance directives
KW - decision-making
KW - terminal care
UR - http://www.scopus.com/inward/record.url?scp=85048750813&partnerID=8YFLogxK
U2 - 10.1016/j.jpainsymman.2018.05.007
DO - 10.1016/j.jpainsymman.2018.05.007
M3 - Article
C2 - 29775694
SN - 0885-3924
VL - 56
SP - 213-221.e4
JO - Journal of Pain and Symptom Management
JF - Journal of Pain and Symptom Management
IS - 2
ER -