Autonomy at the end of life: life-prolonging treatment in nursing homes—relatives’ role in the decision-making process

BACKGROUND: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff's protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. OBJECTIVES: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. DESIGN: A qualitative descriptive design with analysis of the contents of transcribed in-depth interviews with relatives. PARTICIPANTS: Fifteen relatives of 20 patients in 10 nursing homes in Norway. RESULTS AND INTERPRETATIONS: The main findings reveal deficient procedures for including relatives in decision-making processes. Relatives have poor knowledge about the end of life, and there is little discussion about their role as substitute decision-makers for patients who are not competent to give consent. Few relatives understand the concept of patient autonomy. In Norway the treating physician is responsible for patient treatment. When relatives are included in discussions on treatment, they perceive themselves as responsible for the decision, which is a burden for them afterwards. This qualitative study describes relatives' experiences, thus providing important information on the improvement potential with the main objective of safeguarding patient autonomy and caring for relatives. CONCLUSION: The study reveals failing procedures and thus a great potential for improvement. Both ethical and legal aspects must be addressed when considering patient autonomy.