Competing interests: I have read and understood BMJ policy on declaration of interests and declare that I am closely involved in the development of guidance on this matter by the British Medical Association, the Royal College of Physicians, and the General Medical Council, but I am not a member of the working group. I attend the public meetings and comment on proposals put out for consultation. I am often asked to see patients with a prolonged loss of mental capacity and needing a decision on continuing gastrostomy feeding or other treatments, as a second opinion or as part of the legal process. Sometimes I am paid. I speak and teach on this clinical topic. I am developing (with many others) an application for funding to devise a method to assess awareness and responsiveness in people who are in a prolonged disorder of consciousness. Provenance and peer review: Not Commissioned; externally peer reviewed.