Context Decision making regarding the place of end-of-life (EOL) care is an important issue for patients with terminal cancer and their families. It often requires surrogate decision making, which can be a burden on families. Objectives To explore the burden on the family of patients dying from cancer related to the decisions they made about the place of EOL care and investigate the factors affecting this burden. Methods This was a cross-sectional mail survey using a self-administered questionnaire. Participants were 700 bereaved family members of patients with cancer from 133 palliative care units in Japan. The questionnaire covered decisional burdens, depression, grief, and the decision-making process. Results Participants experienced emotional pressure as the highest burden. Participants with a high decisional burden reported significantly higher scores for depression and grief (both P < 0.001). Multiple regression analyses revealed that higher burden was associated with selecting a place of EOL care that differed from that desired by participants (P < 0.001) and patients (P = 0.034), decision making without knowing the patient's wishes and values (P < 0.001) and without participants sharing their wishes and values with the patient's doctors and/or nurses (P = 0.022), and making the decision because of a due date for discharge from a former facility or hospital (P = 0.005). Conclusion Decision making regarding the place of EOL care was recalled as burdensome for family decision makers. An early decision-making process that incorporates sharing patients’ and family members’ values that are relevant to the desired place of EOL care is important.
ASJC Scopus subject areas
- Clinical Neurology
- Anesthesiology and Pain Medicine