End-of-Life Decision-Making By Primary Family Caregivers of Patients with Terminal Cancer: A Qualitative Exploration In China

Background and Purpose: Family caregivers play a vital role in end-of-life decision-making for patients with terminal illness in China. One study found that 97.2% of 436 patients authorized family members to make medical decisions on their behalf (Gu et al., 2016), highlighting the cultural and practical reliance on families in medical decision-making. Despite this significant responsibility, little research has explored how family caregivers experience the responsibility of making end-of-life decisions for patients with terminal illnesses.

This study was conducted in a hospice care unit, one of the first national pilot sites for hospice and palliative care in China. It addresses two questions: (1) what process do primary family caregivers go through when deciding whether to “hold on” or “let go”? and (2) What challenges do they experience during this decision-making process?

Methods: An exploratory qualitative descriptive design was employed to capture caregivers’ perspective and interpretations of their experiences. Using purposive sampling, 10 primary family caregivers were recruited. Inclusion criteria were: (1) aged 18 or older, (2) having cared for a patient with terminal cancer for at least three months, and (3) recognized by the patient and family as the primary decision-maker.

Among the participants, two were spouses and eight were adult children of the patients. Ten individual semi-structured interviews were conducted between December 2023 and January 2024, either in the hospital’s family support room (six interviews) or in the hospice care unit (four interviews). Interviews lasted approximately 50 minutes on average. All interviews were audio-recorded, transcribed verbatim, and analyzed using the constant comparative method.

Findings: End-of-life decision-making by primary family caregivers emerged as a dynamic, emotional, and socially influenced process. As the patients’ conditions evolve, caregivers moved through several interrelated processes, including: (1) trying everything possible to hold on, (2) weighing quality of life against length of life, (3) wrestling with the significance of their caregiving and the meaning of their loved one’s life, and (4) learning to let go.

During this process, four significant challenges were identified and experienced by caregivers: (1) intense emotional conflict between medical realities and attachment to the patient, (2) tension between fulfilling their caregiving responsibility and managing practical burdens, (3) fear, uncertainty, and anxiety about whether they were making the right decisions, and (4) lingering doubts about whether their decisions truly honored the patient’s wishes.

Conclusions and Implications: These intertwined processes and challenges illustrate how primary family caregivers experience the profound responsibility of making end-of-life decisions, highlighting both the emotional and ethical complexity of their role. A better understanding of these experiences can help caregivers to navigate their responsibility more effectively. Healthcare professionals can use these insights to provide tailored support aimed at helping caregivers manage emotional burden and decisional tensions, such as emotional counseling, grief support, and guidance in advance care decision-making.

Given that family involvement and consensus-building are central to decision-making in China, future research should incorporate the perspectives of patients and healthcare professionals. This could provide more insight into end-of-life decision-making and inform the development of family-based, culturally sensitive interventions.