Caregivers' perspectives on surrogate engagement in advance care planning: A mixed-methods study

Abstract

Background: Family involvement in advance care planning is important to achieve patients' wishes and reduce the surrogate burden, particularly in family-centric cultures. Informal caregivers play an important role in helping patients with cancer plan their current and future care, and they serve as surrogate decision makers when patients are unable to make decisions themselves. Objectives: To assess surrogate engagement levels in advance care planning and to identify the challenges for surrogate engagement in advance care planning. Design: A mixed-method design was adopted in which quantitative data collection was followed by qualitative interviews. Setting/participants: Cancer caregivers nominated as potential surrogate decision makers were recruited via convenience sampling from a single cancer centre in Guangzhou, China. In total, 170 participants completed the survey, 25 of whom were interviewed individually. Methods: Surrogate-reported engagement levels were assessed quantitatively using in-person surveys. A subset of the participants underwent semi-structured in-depth interviews to share their healthcare experiences and perspectives on advance care planning. Quantitative data were analysed using descriptive statistics and univariate analyses, whereas qualitative data were thematically analysed and interpreted in the context of the quantitative findings. Results: During their prior experience, 95.3 % of the participants were involved in cancer patients' medical care discussions, whereas 27.6 % actively engaged in advance care planning. Concerningly, most of them had insufficient knowledge and lacked self-efficacy, contemplation, and readiness regarding the surrogate role and end-of-life issues. Three key challenges influencing surrogate engagement in advance care planning were identified: (1) limited awareness of advance care planning, (2) ambivalent motivation arising from surrogate experiences and responsibilities, and (3) lack of support for surrogates' needs. Conclusion: This study revealed that cancer caregivers serving as potential surrogates reported limited engagement in advance care planning, with three key challenges: lack of awareness, motivation, and support. To overcome these challenges, early engagement strategies should focus on clarifying the concepts and potential benefits of advance care planning, resolving surrogate ambivalence, and facilitating access to support.