Objective: Decision-making regarding end-of-life care (EOLC) place causes psychological burden on families and 70% of bereaved families have regrets. Healthcare professionals need to support families to prevent regrets. This study aims to clarify the relationship between the factors related to the decision-making methods used to choose a place of care for terminal cancer patients and the regret experienced by bereaved families.
Methods: Participants were 1110 bereaved family members of patients with cancer. The questionnaire items were as follows: the agreement between patients and their families regarding their preferred place of EOLC, decision-making methods, satisfaction with the factors involved in the decision-making processes, experience regarding communication with medical personnel, and regret experienced by the bereaved families.
Results: This analysis included 332 valid responses from 343 respondents. The regret score was significantly lower for the group wherein patients and their caregivers/families had similar preferences regarding the EOLC place (P < 0.001). Regret scores were significantly higher in the physician-led decision-making group (vs. positive role group P = 0.004, vs. shared role group P = 0.014). The regret scores for the bereaved family members were negatively correlated with the satisfaction scores for "friend support," "relationship with doctor," "information," "explanation by doctor," "thought as oneself," and "participation in the decision" (ρ = -0.207-0.400, P ≤ 0.001).
Conclusions: To reduce bereaved families' regret, family members should know the patients' preferred place of EOLC, and patients and their families should be supported by physicians and nurses to understand their options and participate in the decision-making process.
Keywords: Bereaved family; Decision-making; End-of-Life; Japan; Regret.
© 2022 The Author(s).