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Advance decisions and proxy decision-making in medical treatment and research

This guidance covers the law and ethical issues involved in competent individuals making advance decisions about their later medical treatment and proxy decisions about medical treatment made by other people on behalf of adults who lack mental capacity. When they are mentally competent, patients decide for themselves whether or not to accept the medical treatments recommended by health professionals. This guidance is about what happens when that mental ability to make a valid decision is lost.


Overview of the guidance

Part 1: assessing mental capacity

A key consideration for health professionals prior to focussing on whether there are valid advance or proxy decisions available is to assess whether the individual has indeed lost the mental capacity to decide for him or herself. Part 1 sets out the law on mental capacity and advice on how it should be assessed.


Part 2: advance decisions

When people can no longer make or communicate their decisions, medical choices have to be made which reflect their best interests. Some people may have previously indicated what they consider to be in their interests by making their own advance decision about the medical treatment they do or do not want in future. In ordinary practice, medical treatment decisions generally involve a series of steps as patients’ views and clinical conditions change. New medical techniques may emerge and each stage of treatment normally involves discussion between patients and health professionals.

Loss of mental capacity robs people of the opportunity to participate in a continuing dialogue or to re-assess their options. Advance decisions are an imperfect substitute, but for some they are the only means of expressing their wishes about what they want to happen. There are both benefits and potential dangers to making some treatment decisions in advance, not least due to the risk of error in evaluating possible future developments. Nevertheless, if the decisions made when they were competent comply with the legal criteria set out in Part 2, health professionals are legally bound to comply with them. Most of these binding decisions concern treatment refusal. As well as the law governing advance decisions, Part 2 also covers the practicalities of recording and implementing them and the safeguards if it appears that an advance decision is invalid or has been retracted.


Part 3: Proxy decision-making

Some people prefer to nominate someone they trust to decide for them in future or the courts may appoint someone to do that when the patient is mentally incapacitated. Until relatively recently in the UK, nobody could consent to medical treatment on behalf of a mentally incapacitated adult and that remains the legal position in Northern Ireland. In Scotland, however, such decisions can be made by a welfare attorney. From October 2007, treatment decisions can also be made by a welfare attorney in England and Wales. In the absence of such an attorney, or close family members or other appropriate decision-maker, an independent mental capacity advocate (IMCA) needs to be involved in serious decisions in England and Wales.

Part 3 outlines the legal provisions governing such decision-makers and advisers and looks at the scope of the decisions that they can make - not only about medical treatment but also the patient's participation in research.



Advance decisions and proxy decision-making in medical treatment and research (PDF)