Family Experiences of Witnessing Patients' Desire to Hasten Death in Japanese Palliative Care Units.

CONTEXT: Desire to hasten death commonly affects terminally ill cancer patients, yet family members' experiences remain poorly understood.

OBJECTIVES

To examine how families experienced patients' desire to hasten death, and explore factors potentially associated with related distress.

METHODS

Using data from a nationwide bereaved family survey in Japanese palliative care units, we analyzed 475 valid responses (of 904 distributed; 52.5%), focusing on the 114 respondents whose patients had expressed a desire to hasten death during the final month of life. Emotional responses were assessed using a 16-item instrument, and distress-associated factors were examined using univariable analyses.

RESULTS

A desire to hasten death was reported by 24% of respondents (114/475), 35% of whom involved an explicit request to hasten death (40/114). Physical symptoms were common reasons (80%), although existential distress was also frequently reported (65%). A total of 75.8% of respondents (72/95) reported being distressed or very distressed by hearing the desire. Approximately 70% of respondents considered the patient's desire understandable and supported alleviation of suffering, including sedation, whereas nearly 30% wished that the desire could be fulfilled. About half reported uncertainty regarding how to respond and feelings of helplessness. One-quarter reported unmet needs concerning emotional support and guidance. In univariable analyses, greater emotional distress was associated with a spousal relationship, desire rooted in existential suffering, coping difficulty, and emotional overwhelm.

CONCLUSION

A patient's desire to hasten death imposes a marked emotional burden on family members. Proactive emotional support is needed, as distress persists even when the desire is cognitively understood.