Living wills and advance decisions: how to refuse treatment in advance

What is a living will?

A living will is a written or spoken decision, made in advance, to refuse a particular kind of medical treatment if you ever lose the capacity to make that choice yourself. The legal term in England and Wales is an advance decision to refuse treatment, and its rules sit in sections 24 to 26 of the Mental Capacity Act 2005, which say that you must be 18 or over and have capacity when you make it. The NHS guide to advance decisions uses the two names interchangeably, so a document headed "living will" is treated in the same way as one headed "advance decision" provided it meets the legal requirements.

The Mental Capacity Act Code of Practice explains in chapter 9 that people make one for different reasons, some whilst they are healthy because they want some say over what happens to them later, others after a diagnosis, and many decide not to make one at all and leave decisions to the professionals caring for them at the time. There is no obligation either way.

What can an advance decision refuse, and what can it not do?

An advance decision can refuse any specific treatment, including treatment needed to keep you alive, but it can only refuse, because the Code is clear that nobody has a legal right to demand a particular treatment, either at the time or in advance. NHS.uk gives ventilation, cardiopulmonary resuscitation (CPR) and antibiotics as examples of life-sustaining treatments a person might refuse, and the Code confirms that artificial nutrition and hydration counts as medical treatment that can be refused too. It cannot ask for anything that is against the law.

The decision has to say precisely which treatment you are refusing, since a general wish not to be treated is not enough, although you can use everyday language rather than medical terms and it helps to describe the circumstances in which the refusal should apply. It also cannot refuse what the Code calls basic or essential care, which means the things done to keep you comfortable, such as warmth, shelter, keeping you clean and offering food and water by mouth. Finally, it only comes into play if you lack capacity at the time, so whilst you can still decide for yourself, your own decision on the day is what counts.

How do you make an advance decision to refuse life-sustaining treatment?

A refusal of life-sustaining treatment only takes effect if it meets extra formalities, which section 25 of the Mental Capacity Act sets out. The decision must be in writing, it must be signed by you (or by someone else in your presence and at your direction), your signature must be made or acknowledged in front of a witness who then signs in your presence, and it must include a statement from you that the decision applies to that treatment even if your life is at risk. The Code adds that if this statement is made separately from the rest of the decision, it needs to be signed and witnessed in the same way.

The Act defines life-sustaining treatment as treatment that the person providing your care considers necessary to keep you alive, and the Code points out that this depends on the situation as well as on the treatment, since antibiotics, for example, can be life-sustaining in one case and routine in another. For any other refusal there are no particular formalities, and an advance decision can even be made verbally, although a written one is far easier to rely on. There is no set form, and the Code suggests including your full name, date of birth and address, your GP's details, a clear statement of the treatment refused and when, the date, and your signature.

The Code says it is very important to discuss a refusal of life-sustaining treatment with a healthcare professional, such as your GP, who can explain what the treatment involves and what refusing it would mean, although this is not compulsory. You do not need a solicitor, but the Code notes that some people choose legal advice to make sure the decision is clearly worded, and some charities and condition-specific organisations publish their own formats.

Is an advance decision legally binding?

A valid advance decision that applies to the treatment in question is legally binding, because section 26 gives it the same effect as a decision you made at the time with full capacity, and the Code says healthcare professionals who ignore one could face civil or criminal liability. It stops being valid if you withdraw it whilst you have capacity, if you later make a lasting power of attorney giving your attorney authority over the same treatment, or if you do something clearly inconsistent with it.

It also does not apply if the treatment proposed is not the one you described, if the circumstances you set out are absent, or if there are reasonable grounds to believe something has changed that you did not anticipate and that would have affected your decision, such as a new treatment becoming available. The Code therefore advises reviewing an advance decision regularly, because one made long ago is not automatically invalid but may raise doubts, and it suggests a new stage of an illness or a major change in your life as natural moments to look at it again. You can withdraw or change an advance decision at any time whilst you have capacity, and a withdrawal does not need to be in writing, although adding a refusal of life-sustaining treatment brings the written formalities back into play.

What is an advance statement, and how does it fit into an advance care plan?

An advance statement is a written record of your wishes, preferences, beliefs and values about future care, and unlike an advance decision it is not legally binding, although NHS.uk's page on advance statements says anyone making decisions about your care must take it into account. It can cover almost anything, from where you would prefer to be cared for and your religious or spiritual beliefs to how you like to spend the day or who would look after a pet, and the Mental Capacity Act requires anyone deciding what is in your best interests to consider any relevant written statement you made whilst you had capacity.

NHS.uk describes advance care planning as thinking and talking ahead about how you would like to be cared for towards the end of life, and it lists an advance statement, an advance decision, a lasting power of attorney and a ReSPECT plan for emergencies as ways of planning ahead, adding that there is no set way of doing it, so there is no single document that has to be completed. Wishes about your estate are a separate matter, and our guide to writing a letter of wishes explains the non-binding document people keep alongside a will.

Does a living will override a lasting power of attorney?

Whichever was made later generally takes precedence where both cover the same treatment, which is the rule chapter 9 of the Code sets out. A valid advance decision made after a health and welfare lasting power of attorney overrides your attorney on that treatment, so the attorney cannot consent to something you have refused, whereas a lasting power of attorney made after an advance decision makes the advance decision invalid if it gives your attorney authority over the same treatment. Section 11 of the Act also means an attorney can only consent to or refuse life-sustaining treatment on your behalf if the lasting power of attorney expressly gives them that power.

Some people choose an advance decision because they want a fixed answer on a particular treatment, whilst others prefer an attorney who can weigh up circumstances nobody foresaw, and many have both, in which case it is sensible to check that the two documents are consistent. Our guide to setting up a lasting power of attorney explains how a health and welfare LPA is made, and our guide to how much a lasting power of attorney costs covers the fee. Without either document, being next of kin does not give your family the right to consent to or refuse treatment for you, as our guide to next of kin explains.

Is a do not resuscitate form the same as an advance decision?

No, because a do not attempt cardiopulmonary resuscitation (DNACPR) decision is made by you and your doctor or healthcare team, or by the doctor alone, and recorded on a form, whereas an advance decision is your own legal refusal. NHS.uk's guide to DNACPR decisions says the doctor makes the final decision after asking about your wishes, that you must be told when a form will be or has been completed, that it covers CPR only so all other care continues, and that the form itself is not legally binding. If you want a refusal of CPR that doctors must follow, the same page points to an advance decision to refuse treatment.

Some areas record these conversations on a ReSPECT plan, which the Resuscitation Council UK describes as the Recommended Summary Plan for Emergency Care and Treatment. It is made through conversations between you, your family and the professionals caring for you, sets out recommendations for your care in a future emergency, with decisions about CPR considered as part of that, and is not legally binding, so it sits alongside an advance decision rather than replacing it.

How is it different in Scotland and Northern Ireland?

Scotland: The Mental Capacity Act rules do not apply, and NHS inform's guide to legal planning says advance directives are not legal documents in Scotland, although doctors can use one when making decisions about your treatment. The Adults with Incapacity (Scotland) Act 2000 requires anyone acting under it to take account of your present and past wishes, so a clear written directive can still carry weight, and a welfare power of attorney lets someone you choose make health decisions for you.

Northern Ireland: The Department of Health's advance care planning policy says an advance decision to refuse treatment is legally binding there if it is confirmed and applicable. Lasting powers of attorney are not yet available there, because the lasting power of attorney provisions of the Mental Capacity Act (Northern Ireland) 2016 are still shown as not in force on legislation.gov.uk, and the Department's policy, published in October 2022, says that at the moment nobody can consent to treatment on another adult's behalf, so decisions are otherwise made in the person's best interests.

What to do next when planning treatment in advance

1. Talk to your GP or the clinician treating you about the treatments you are thinking of refusing and what refusing them would mean.

2. Write the decision down, naming each treatment and the circumstances, and if it covers life-sustaining treatment, include the statement that it applies even if your life is at risk, then sign it in front of a witness who signs too.

3. Ask your GP to keep a copy in your medical records, and tell your family, carers and any attorney where the original is, perhaps carrying a card that says you have one.

4. Consider an advance statement for the wishes that are not refusals, and a health and welfare lasting power of attorney if you would like someone to decide the things you cannot foresee.

5. Review the decision when your health or circumstances change, and tell everyone who has a copy if you change or withdraw it.

These documents deal with your care whilst you are alive, and a lasting power of attorney ends when you die, as our guide to whether power of attorney ends at death explains, after which your family or executors have to find and tell every bank, utility, insurer and subscription you held, which is far easier if you have left a clear record of them. If that work does fall to your family, Legacy Trail's free notification service can contact the private-sector companies for them.