Informal caregivers of elderly patients in France: their behavior and knowledge as trusted person

Background. When elderly patients lose decision-making capacity at the end of life, physicians rely on relatives to convey their wishes. French law allows patients to appoint a "trusted person" in writing, whose testimony prevails over that of other relatives and who also accompanies and advises the patient. Informal caregivers often perform these tasks without formal designation. Objective. To assess informal caregivers' knowledge of the trusted person scheme, how often they act as trusted persons without designation, and the determinants of formal designation. Methods. An online survey was conducted in May 2022 among 137 informal caregivers of patients aged over 65 in metropolitan France. We built a knowledge scale and classified caregivers into four categories: legally valid trusted persons, de facto trusted persons, withdrawn trusted persons, and simple caregivers. Multinomial probit and probit models were estimated. Results. Caregivers knew the main missions but confused the scheme with legal protection measures and misunderstood the written requirement. Formally designated trusted persons were not more knowledgeable, whereas hospital-informed caregivers were. Most caregivers performed trusted person duties, mostly without formal designation. Legal knowledge did not predict formalization, whereas help with daily activities, de facto performance of duties and nursing home placement did. Chronic conditions and intensive informal care increased the likelihood of assuming trusted person duties. Conclusion. Official designation rates underestimate the number of people acting as trusted persons, questioning the relevance of the current legal framework. Keywords: informal care; trusted person; elderly patients; end of life; France