ABSTRACT
BACKGROUND: Instances of surrogate decision-making are expected to increase with the rise in hospitalised older adults in Japan. Few large-scale studies have comprehensively examined the entire surrogate decision-making process. This study aimed to gather information to assess the current state of surrogate decision-making in Japan. METHODS: A cross-sectional survey was conducted using online questionnaires. A total of 1000 surrogate decision-makers responded to the questionnaire. We examined the characteristics of surrogate decision-makers and patients, content of surrogate decision-making meeting regarding life-sustaining treatment between the doctors and surrogate decision-makers, extent of involvement of the various parties in the surrogate decision-making process, judgement grounds for surrogate decision-making, and frequency of involvement in the surrogate decision-making process. RESULTS: Of the participants, 70.5% were male and 48.3% were eldest sons. Only 7.6% of the patients had left a written record of their preferences and 48.8% of the surrogates reported no knowledge of the patient having expressed their prior intentions regarding medical care in any form. Respondents indicated that their family meetings with healthcare professionals mostly included the information recommended by guidelines in a surrogate decision-making meeting in Japan. Most participants reported a good understanding of the meeting content. Although many participants based their decisions on multiple grounds, surrogates' considerations may not adequately reflect respect for patient autonomy in Japan. Specifically, the eldest son considered his own preference more frequently than that of the other surrogate decision-makers. In 26.1% of the cases, either zero or one family meeting with healthcare professionals was held. In these cases, significantly fewer decisions involved the participation of healthcare professionals other than the doctor compared to cases with multiple meetings. CONCLUSIONS: Surrogate decisions in Japan are most commonly made by eldest sons and may not frequently consider the perspectives of other surrogates. The finding that patient preferences were rarely known suggests a role for increased advance care planning.
