Advance Decisions and Living Wills in the UK

Imagine waking up after a stroke unable to communicate, or developing dementia and losing your sense of self. In those moments, you can't tell doctors what you want. An advance decision lets you make that choice now, while you're able to think clearly about it.

This is different from a will, which deals with your property and money after death. An advance decision is about your medical care whilst you're alive but unable to make decisions. It's one of the most personal documents you might create, because it's entirely about your own values, fears, and what quality of life matters to you.

An advance decision is a document in which you refuse specific medical treatments. Think of it as saying: "If X condition happens and I can't decide, then no to treatment Y."

The legal status varies across the UK. In England and Wales, a valid advance decision to refuse treatment (ADRT) is legally binding. In Scotland, advance directives are recognised in clinical practice and at common law, but they are not formal legal documents in the same way. In Northern Ireland, advance decisions are binding at common law, though there is no detailed statutory framework yet in force.

The key word is refuse. You cannot demand treatment in an advance decision, only refuse it. So you might refuse resuscitation, or refuse artificial feeding, or refuse specific medications. But you cannot use an advance decision to insist that doctors give you a particular treatment. Requests for treatment made in advance are considered as part of assessing your best interests, but they cannot force a healthcare professional to provide treatment they think would be harmful or futile.

There's an important distinction here, because it's easy to confuse the two.

An advance decision is a legally binding refusal of specific medical treatment. If valid and applicable, doctors must follow it.

An advance statement is a document expressing your general wishes, preferences, and values about your future care. It isn't legally binding, but healthcare professionals should still make practical effort to follow your wishes. For example, you might write in an advance statement that you value independence, or that you want to remain at home, or that you want pain relief to be a priority even if it shortens your life. These are useful, but they don't have the legal force of an advance decision.

You can have both documents. Many people do. The advance statement captures your broader values; the advance decision makes the hard legal call on specific refusals.

The Mental Capacity Act 2005 is the key statute. It says that if you make a valid advance decision to refuse treatment, healthcare professionals must respect it, even if they think it would be in your best interests to have the treatment, and even if it might cost you your life.

An advance decision is valid if:

• You made it when you had capacity (the mental ability to understand the decision you were making)
• You made it voluntarily, without pressure from anyone else
• You didn't subsequently withdraw it
• You haven't done anything since that suggests you've changed your mind

An advance decision is applicable if:

• The medical situation matches what you described in the document
• You would currently lack capacity to make a decision about that treatment

For an advance decision to refuse life-sustaining treatment, there are stricter requirements. "Life-sustaining treatment" means treatment without which you would die (for example, artificial nutrition and hydration, ventilation, or cardiopulmonary resuscitation).

To make a valid advance decision refusing life-sustaining treatment, you must:

• Put it in writing
• Sign it yourself in front of a witness
• Include a clear statement saying that it applies even if your life is at risk
• Have the witness sign it in your presence

For refusals of treatment that isn't life-sustaining, you can make an advance decision without these formalities, though writing it down is a very good idea.

Scotland has a different legal framework. There's no specific statutory "advance decision" regime in the way England and Wales has one. Instead, advance statements are recognised at common law and in clinical practice. This is an important distinction.

The Adults with Incapacity (Scotland) Act 2000 sets out how decisions are made for people who lack capacity, but it does not create a formal legal mechanism for advance decisions like the Mental Capacity Act does south of the border. Instead, Scottish law treats advance statements as "potentially binding" in the sense that clinicians are expected to respect them, but they don't have the same absolute legal status as an advance decision in England and Wales.

That said, the common law position is that healthcare professionals in Scotland should respect a valid advance statement about refusal of treatment. But this is more of a professional and ethical obligation than a strict legal requirement in the same way it is in England and Wales. In practice, a well-documented advance statement is usually respected by Scottish healthcare professionals.

The Scottish courts have recognised that autonomous decisions made while a person had capacity should normally be respected even after capacity is lost, but case law continues to develop on this point.

Some people in Scotland choose to also create a welfare power of attorney, which allows you to appoint someone to make health and care decisions on your behalf. This can cover decisions about treatment refusal and is recognised in statute. You can use both an advance statement and a welfare power of attorney.

The Mental Capacity Act (Northern Ireland) 2016 is the relevant statute, though it is only partially commenced and not yet fully in force. Advance decisions are not codified in the Act itself. Instead, they are governed by common law, meaning the law as developed through court cases rather than through legislation.

Under common law in Northern Ireland, advance decisions to refuse treatment must be complied with if they are valid and applicable. So in practical terms, the position is similar to England and Wales, but with less statutory detail.

The Act required the Department of Health to conduct a review of the law relating to advance decisions, and that review was published in 2019. Advance decision law in Northern Ireland remains an evolving area that may eventually be covered more formally in statute as further provisions of the Act are commenced.

One important difference from England and Wales: Northern Ireland does not have health-and-welfare lasting powers of attorney. The current system in Northern Ireland uses Enduring Powers of Attorney, which cover property and financial affairs, not health decisions. If you want someone to make health decisions on your behalf in Northern Ireland, an advance decision is your main tool.

For now, if you live in Northern Ireland, it is sensible to treat an advance decision in much the same way as you would in England and Wales: put it in writing, be specific about what you are refusing, and have it witnessed if you are refusing life-sustaining treatment.

You can refuse almost any medical treatment: surgery, medication, blood transfusions, artificial feeding, ventilation, dialysis, resuscitation, antibiotics, chemotherapy, and so on.

You cannot refuse basic care such as warmth, shelter, hygiene, or comfort measures like pain relief. Advance decisions don't affect the duty of healthcare professionals to keep you comfortable.

You also cannot refuse treatment for a mental health condition if you're detained under the Mental Health Act 1983 in England and Wales. If you're detained, the hospital can override your advance decision on mental health treatment (this is specific to mental health, not physical health treatment).

In Scotland and Northern Ireland, the position on mental health treatment and advance decisions differs; seek legal advice specific to your jurisdiction if this is a concern.

This can be confusing, so let's be clear.

In England and Wales, a lasting power of attorney (LPA) for health and welfare allows you to appoint someone called an attorney to make decisions on your behalf if you lose capacity. That attorney can consent to or refuse medical treatment. (Note: this type of LPA is available in England and Wales. Northern Ireland does not currently have health-and-welfare LPAs; see the Northern Ireland section above.)

Here's the key interaction: if you've made an advance decision refusing a treatment, an attorney appointed under an LPA cannot override that advance decision unless the LPA was made after the advance decision and specifically gave the attorney authority to consent to or refuse that particular treatment.

In other words, if you made an advance decision in 2020 refusing artificial feeding, and then made an LPA for health and welfare in 2024, your attorney could potentially override that refusal, but only if the LPA specifically gives the attorney authority over that treatment. A later LPA with general health authority does not automatically override an earlier advance decision. If the LPA came first, it does not override the later advance decision.

This is why it's important to think about both documents together and, if you're using both, to make sure they work in harmony.

In Scotland, a welfare power of attorney serves a similar function to an LPA. The same principle applies: an advance statement made earlier won't be automatically overridden by a later welfare power of attorney unless the power of attorney specifically authorises it.

You don't need a lawyer to create an advance decision, but because it's legally binding, getting it right matters.

Step 1: Choose what to refuse

Think about specific treatments and specific situations. Don't be vague. "No extraordinary measures" is not specific enough. Instead: "I do not wish to be resuscitated if I suffer a cardiac arrest" or "I refuse artificial nutrition and hydration if I develop advanced dementia and can no longer swallow safely."

Be as detailed as you can. What conditions matter to you? What outcomes would make life not worth living, in your view?

Step 2: Write it down

Put your advance decision in writing. Include:

• Your full name, date of birth, and the date you're making the decision
• A clear description of the treatment(s) you're refusing
• The circumstances in which you're refusing them
• If you're refusing life-sustaining treatment, an explicit statement that your decision applies even if your life is at risk
• A statement that you understand what the refusal means

You can use your own words. There's no magic formula. Something like: "If I am diagnosed with advanced dementia and reach a stage where I cannot swallow safely, I refuse artificial nutrition and hydration. I understand that this may shorten my life."

Step 3: Sign and have it witnessed (for life-sustaining treatment)

If you're refusing life-sustaining treatment, you must:

• Sign the document yourself
• Do so in front of a witness
• Have the witness sign it in your presence

The witness can be anyone aged 18 or over, but ideally not someone with an interest in your estate or your medical care. A friend, colleague, or neighbour is fine.

Step 4: Tell people

An advance decision locked in a drawer is useless. Tell your GP, your family, and anyone involved in your care. Give copies to:

• Your GP surgery
• Your hospital consultants if you have any
• Your family
• Your attorney if you've made an LPA
• Anyone else who might be involved in your care

Some people keep a copy in their wallet, or register it with an advance decision registry (a few exist in the UK, though they're not mandatory).

Step 5: Review it regularly

Review your advance decision every few years, or if your circumstances change significantly. If you change your mind, withdraw the old one and make a new one. Keep the new one in the same places.

• "An advance decision is like a living will, so it's only for the end of life." Not quite. An advance decision can apply at any point in your life when you lose capacity, and it doesn't have to be about dying. You might refuse a particular medication if you develop a mental health condition, or refuse a certain surgery if you have an accident. It's not limited to terminal illness.
• "My advance decision means doctors will stop treating me." Only if you've specifically refused the treatments they would offer. An advance decision doesn't mean "do nothing". It means "don't do X in situation Y." Doctors will still treat you, but they'll respect your refusal.
• "Once I make an advance decision, it's permanent." You can change your mind at any time. Withdraw the old one, make a new one, and tell everyone. You can also change your mind verbally if you regain capacity: a contemporaneous decision by someone with capacity overrides an advance decision made when they lacked capacity.
• "I can demand a particular treatment in an advance decision." No. Advance decisions only refuse treatment. They can't demand it. You can make an advance statement expressing a preference for certain treatments, but a healthcare professional doesn't have to provide treatment they think would be harmful or futile.
• "My advance decision applies everywhere." This is mostly true in England and Wales, where an advance decision that's valid is binding on any healthcare professional treating you. In Scotland and Northern Ireland, the position is slightly less certain, though in practice advance statements are widely respected. Check with your healthcare provider if you're concerned.
• "Everyone should have an advance decision." Not necessarily. If you're happy for doctors to make decisions in your best interests based on what they know about you and your family, you don't need one. But if you have strong feelings about certain treatments, or if you're worried you might lose capacity, it's worth having.

You should review your advance decision:

• Every 3–5 years as a matter of routine
• If your health changes significantly
• If your values or priorities change
• If you're diagnosed with a new condition
• Before you make a lasting power of attorney (to make sure they work together)
• If major changes happen in your family
• If medical treatments change (new options might matter to you)

If you decide to update it, make a new document. Don't annotate the old one.

Keep the original or a clearly marked copy in a safe place at home. Make additional copies for:

• Your GP practice
• Your hospital if you're under specialist care
• Your family or people close to you
• Your attorney if you've appointed one
• Anyone involved in your care

Some NHS trusts have advance decision registries on their systems. Ask your GP whether your local NHS service uses one and whether you can register your document there.

The NHS advises making sure your family, carers, and healthcare professionals know about your advance decision and where to find it. You can ask your GP to keep a copy in your medical records.

If you lose capacity and you haven't made an advance decision, healthcare professionals will make decisions in your best interests. This is called the "best interests" test under the Mental Capacity Act. They'll consult with family, carers, and anyone you've appointed as an attorney, but ultimately doctors decide.

This is why an advance decision matters if you have specific wishes.

You don't need to pay anyone to make an advance decision. There is no charge to create one yourself.

However, some people find it helpful to discuss their wishes with a healthcare professional first, perhaps their GP, to make sure they're making informed choices. That conversation is covered by the NHS at no charge.

Some solicitors will help you draft an advance decision for a fee. This is entirely optional. A DIY advance decision made carefully and sincerely is just as legally valid as one drafted by a solicitor. That said, if you have complex medical history, or you're refusing something complex, a solicitor's input might give you peace of mind.

Expect to pay somewhere between £100–£300 if you use a solicitor, though it varies. Many solicitors offer flat fees for advance decisions.

In England and Wales

• Advance decisions are legally binding if valid and applicable
• You need a written document, signature, and witness for life-sustaining treatment
• The Mental Capacity Act 2005 is your legal framework

In Scotland

• Advance statements are recognised at common law and in practice
• They're not formally "binding" in statute, but clinicians are expected to respect them
• A welfare power of attorney can cover health decisions
• The Adults with Incapacity (Scotland) Act 2000 applies to decision-making for people who lack capacity

In Northern Ireland

• Advance decisions are binding at common law if valid and applicable
• The Mental Capacity Act (Northern Ireland) 2016 is only partially commenced
• The statutory review of advance decision law was published in 2019; further reform may follow as the Act is commenced
• Northern Ireland does not have health-and-welfare LPAs; Enduring Powers of Attorney cover property and financial affairs only
• Treat advance decisions similarly to England and Wales for practical purposes