Impact of Patients' Expressed Wishes on Their Surrogate Decision Makers' Preferred Decision-Making Roles in Japan

Home medical care (HMC) patients and their families are expected to prepare for end-of-life decision making.

We investigated the decision readiness of HMC patients and their family surrogates.

Cross-sectional survey.

We collected data from dyads, consisting of a HMC patient aged 65 years or older and a family member of the patient, recruited at four Japanese primary care clinics from January 2016 to November 2016.

Surrogates completed a questionnaire on their sociodemographic and health status and their decision readiness. Primary HMC physicians provided information on their patients.

A total of 337 dyads were screened, and 159 were included. The mean age of patients and surrogates was 86 and 64 years, respectively, and 29% of patients were cognitively impaired. Only 1.9% of the patients left written advance directives, and 32% were entrusting all decision making to the doctor or their families. Regarding the surrogate's preferred decision-making role, 21.9% of the surrogates preferred doctors to assume decision-making responsibility. A multivariate analysis revealed that no discussion of care goals (odds ratio [OR] 2.88, 95% confidence interval [CI] 1.02-8.17) and patients having expressed their wishes verbally, including entrusting decision making to others (OR 2.51, 95% CI 1.07-5.89), were associated with surrogates' preference for doctors to have decision-making responsibility.

Many patients preferred to entrust the end-of-life decisions to others rather than utilizing advance directives, which made surrogates more dependent on doctors for decision making. Qualified advance care planning is required to promote familial discussion and surrogates' decision readiness.