Any person over the age of 18 has the right to refuse medical treatment as long as they have capacity to make the decision. This is the case even if that refusal will result in their death.

Adults with capacity also have the legal right to refuse medical treatment in advance in an Advance Decision. This allows their wishes to be known about should they lose capacity to make or communicate decisions in the future. The right to refuse treatment in an Advance Decision was written into statutory law in the Mental Capacity Act 2005 (MCA), which came into force in October 2007.

How we can help

Compassion in Dying has produced a toolkit that aims to support healthcare professionals’ understanding of Advance Decisions. You can download a PDF version.

The Mental Capacity Act 2005

The MCA sets out in law a framework that must be followed when making decisions on behalf of someone who cannot make a decision for themselves. The MCA applies to everyone, including family members and friends as well as healthcare professionals.

The Act is based on five key principles. These principles must underpin everyone’s approach to decision-making:

  1. A person must be assumed to have capacity unless it is proven otherwise.
  2. People should be given all possible help and support to make their own decisions before anyone concludes that they lack capacity. This includes supporting people to communicate in different ways, such as making noises, or blinking, if they cannot use words to communicate.
  3. It is every adult’s right to make a decision that seems unwise or strange to someone else. If a person makes such a decision it does not necessarily mean that they lack capacity.
  4. Any decision that is made on behalf of a person who lacks capacity must be made in that person’s best interests.
  5. People who lack capacity should not have their basic rights and freedoms restricted unnecessarily. This means that whenever a decision is made on someone else’s behalf the person making the decision must consider if a different decision or action would interfere less with the person’s rights and freedoms.

What is ‘capacity’?

Capacity is the ability to make a decision. It is time and decision-specific. This means that whether or not a person has capacity depends on when the decision needs to be made and what the decision is. For example, a person may lack capacity to make a decision on one day but be able to make that decision at a later date. This might be if, for example, they have dementia and their capacity is fluctuating. A person might also have capacity to make some decisions but not others. For example, they could be able to decide what they want to eat but not have capacity to understand what will happen if they refuse life-sustaining treatment. So, a healthcare professional cannot make a blanket decision that a person ‘lacks capacity’ based solely on their behaviour or diagnosis.

The MCA states that a person has capacity if they can:

a) understand the information relevant to the decision;
b) retain that information;
c) use or weigh up that information as part of the process of making the decision; and
d) communicate the decision (whether by talking, using sign language or any other means).

If a person is unable to do one or more of these things then they are deemed to lack capacity to make that particular decision.

Other guidance that healthcare professionals can refer to includes:

GMC Guidance on Treatment and Care towards the End of Life

The GMC Guidance is designed as a framework to support healthcare professionals to address issues at the end of life in a way that helps the needs of individual patients. It acknowledges that the decision whether to withhold or withdraw treatment that may prolong a person’s life is one of the most challenging decisions faced by healthcare professionals and is based on long-established medical principles including respect for human life and care and respect for patients.

BMA Guidance on Advance Decisions

The BMA Medical Ethics Department has produced guidance on Advance Decisions including advice for healthcare professionals involved in the making of an Advance Decision, and in assessing their validity and applicability. The Guidance covers the reasons that patients may wish to make an Advance Decision and any practicalities that need to be considered.

MCA Code of Practice

The Code of Practice provides practical guidance on implementing the Mental Capacity Act for anyone that must have regard to its provisions including professionals and carers.