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. (shrink)

Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine physicians and ten nurses in (...) 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)