Family member perspectives of deceased relatives' end-of-life options on admission to a palliative care unit in Japan

Abstract

Purpose: Our goal was to better facilitate the desire of terminally ill patients to die in a favorite place, which may not always be the case for patients admitted to palliative care units. Our aims were to assess the perspectives of bereaved family members about (1) available and preferred places of care when their ill loved one was admitted to a palliative care unit and (2) why patients preferred to live at home but could not.

Methods: A questionnaire was answered by 407 of 663 bereaved family members of cancer patients who were admitted to 95 inpatient palliative care units in Japan.

Results: Seventy-three percent of respondents answered that a palliative care unit was the only available option. Patients lacking other places for care preferred their home (49%), a hospital (26%), or a long-term care facility (28%). Only 9% retrospectively considered that living at home was feasible for the following reasons: anxiety about the patient's deteriorating physical condition (85%), insufficient care at home compared to a hospital (84%), imminent hospitalization (63%), and the patient's concern about being burdensome (60%).

Conclusion: Seventy-three percent of terminally ill cancer patients admitted to palliative care units had no other options for care. Improving outpatient treatment at palliative care units and establishing a palliative care system in patients' homes would greatly benefit patients and their families.