• Palliative medicine · Oct 2023

    Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.

    • Megumi Kishino, Jonathan Koffman, Hiroaki Nagatomi, Misuzu Yuasa, and Clare Ellis-Smith.
    • Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.
    • Palliat Med. 2023 Oct 1; 37 (9): 143414461434-1446.

    BackgroundFamily members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear.AimTo explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan.DesignQualitative study incorporating semi-structured in-depth interviews with thematic analysis informed by Family Systems Theory.Setting/ParticipantsMedical oncology departments at two tertiary hospitals in Japan. A purposive sample of 13 advanced cancer patients, 10 family members and 9 healthcare professionals who cared for them.ResultsTwenty-five interviews were conducted, comprising 7 dyads of patients and their family members and 18 individual interviews. Four themes were identified: characteristics of patients and family members and their views on illness and advance care planning; family context and communication; interactions with healthcare professionals and societal and cultural influences; and family members' acceptance, preparation and confidence. Family involvement was observed as being variable at an individual level and also across generations. Family members provided patients with the instrumental and emotional support that facilitated the advance care planning process. Family involvement enabled family members to better prepare for realising patients' wishes. It increased family members' confidence in surrogate decision-making.ConclusionsTwo mechanisms of how family involvement may enable goal-concordant care were identified: family members' support provision and their preparation for realising patients' wishes. Healthcare professionals should assess family's readiness to engage in advance care planning, and the time required to prepare them for the process.

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