Family members' experiences of surrogate decision-making in hospice care: A systematic review of qualitative studies

Background: Surrogate decision-makers play a key role in determining whether end-of-life patients receive hospice care. There is a need to better understand families' experiences of surrogate decision-making in hospice care for end-of-life patients to provide a basis for developing targeted interventions, such as decision support tools or counseling, to help family members navigate the decision-making process.

Aim: The aim was to analyze and synthesize global qualitative data on family members' experiences of surrogate decision-making regarding whether to receive hospice care for end-of-life patients.

Design: This was a systematic review of qualitative studies.

Data sources: The PubMed, Web of Science, Cochrane Library, Embase, Cumulated Index to Nursing and Allied Health Literature, Chinese Biomedical Literature Service System, China National Knowledge Infrastructure, WanFang and China Science and Technology Journal databases were searched from inception to September 2024. Studies related to family members making surrogate decisions about whether to receive hospice care for end-of-life patients were included.

Review methods: This review was guided by the Joanna Briggs Institute Manual for Systematic reviews of qualitative evidence. Two reviewers independently screened the studies and extracted the data. The eligible studies were assessed via the Joanna Briggs Institute critical appraisal instrument for qualitative research. Thematic synthesis was guided by the method developed by Thomas and Harden.

Results: A total of nine studies were included. The synthesis of qualitative data resulted in three themes: (1) Decision motivation between rationality and emotion. The reasons surrogate decision-makers considered hospice care for patients involved multiple aspects and were a result of both objective and subjective factors. (2) Decision preparation stemmed from knowledge and experience. A knowledge-based foundation and experiential grounding were needed to ensure that surrogate decision-makers make informed decision. (3) Decision reflection through looking back and forward. Surrogate decision-makers expressed satisfaction with the decision to choose hospice care for patients, coupled with serious consideration of personal future end-of-life decisions.

Conclusion: Determining whether patients receive hospice care at end of life is complex for family members. This process begins with the coexistence of rational and emotional motives for decision-making, involves preparation for decision-making through the acquisition of knowledge and experience about hospice care, and culminates in reflection on the entire decision-making process. These findings underscore the importance of providing sufficient informational and emotional support to family decision-makers, which can improve decision-making and promote more compassionate end-of-life care. Future research should focus on developing effective strategies to strengthen these support systems.

Study registration: A protocol was registered on the PROSPERO (CRD42024526197).