What is an advance decision?

An advance decision is a statement of instructions about what medical and healthcare treatment you want to refuse in the future, in case you lose the capacity to make these decisions. For example, you could use it to say you do not wish to be resuscitated if you develop certain medical conditions in the future.

You can only make an advance decision if:

• You have the capacity to make those decisions now
• You are an adult (at least 18 years old).

Do health professionals have to follow my advance decision?

Generally, yes. An advance decision will be legally binding, and must be followed by health professionals, if you have made a clear and valid advance decision and you have followed the procedures set out in the Mental Capacity Act. It must be in writing, signed and witnessed. It must state clearly that the decision applies even if life is at risk.

If you are an informal patient, health professionals should follow your advance decision, even if you are being treated in hospital. However, treatment may be given to you in an emergency, especially if it is not clear if your advance decision covers the particular treatment the professionals want to give you to deal with the immediate situation.

What are the exceptions?

There are some situations where a doctor or healthcare professional would not need to follow your advance decision:

• If you have asked for a certain type of medical treatment. When you ask for a certain type of medical treatment, as opposed to refusing one, you can put these preferences down in a document, and it should be taken into account. However, it will not be legally binding so a doctor or professional does not have to follow it.
• If it is not clear what type of treatment you wish to refuse in your advance decision.
• If you have cancelled your advance decision since making it.
• If you have named an attorney under a Lasting Power of Attorney and given them the power to make the same decisions or refusals you have mentioned in your advance decision, since making it.
• If you have become capable of making the decisions yourself that you mention in your advance decision, at the time that treatment is offered to you.
• If there has been a change of circumstances since you made your advance decision, so that it is doubtful whether you would make the same decision now. This might include recent advances in medical treatment and improvements in medication.

How do I make an advance decision?

We can assist with preparing your advance decision. This should be in writing and should be shared with relevant health professionals, or by having a note made in your hospital or GP medical notes.

You should make your advance decision in writing because:

• Your instructions will be clearer and easier to understand – this is especially important if your instructions are complex
• It will be easier to get advice about your instructions
• If your instructions include a refusal of future possible life-saving treatment you must set them down in writing and include the information listed below.

Can I refuse treatment that saves or prolongs my life?

• Yes, but certain treatment can still be given to you if it is necessary to save or prolong your life. Health professionals can give you this treatment lawfully without your consent if you lack the capacity to make this kind of decision.
• If your advance decision is likely to be complicated or involve refusing life-saving treatment, you should get legal advice on what to say (the Law Society provides details of solicitors you can get in touch with) or get someone else to help you with it, such as an advocate or healthcare professional.

Can I refuse future treatment that I could be made to have if I am sectioned?

• You cannot generally use an advance decision to refuse treatment that might be given in the future for your mental health problems if you are sectioned under the Mental Health Act 1983 at that time. For example, you cannot refuse mental health medication in this way for when you are sectioned in the future.
• The exception is with electroconvulsive therapy (ECT). You can use an advance decision to refuse ECT in the future, even if you are sectioned at the time when it could be given.
• The only situation where your advance decision can be not followed is in an emergency, and emergencies that need treatment with ECT are unlikely to happen.

Can I make an advance decision if I am sectioned?

• Yes, you can make an advance decision even if you are sectioned and in hospital under the Mental Health Act.
• Remember that you still need the capacity to make decisions about your treatment at the time you are writing your advance decision – that is, you should try to make sure your capacity to make decisions about your treatment is not affected by:
  • your mental health condition, or
  • any medication you may be taking.

Can I use an advance decision to appoint a healthcare attorney?

• No, there is a standard way of appointing a healthcare attorney, and official forms that you must use.
• If you have made an advance decision, you should be careful about appointing an attorney afterwards.
• If you give your healthcare attorney power to make the same type of decisions you have made in your advance decision, this could make your advance decision invalid or partly invalid. This is because the law says that you have acted inconsistently with your advance decision and presumes that you want your attorney to take over the power to make these decisions instead.
• However, there is no reason why you cannot make an advance decision and a lasting power of attorney covering financial and property decisions at the same time, because an advance decision will not cover financial and property matters.

Can I change my advance decision?

• Yes – you can change your advance decision at any time, and the Mental Capacity Act does not have a particular way for you to do it.
• You may need to change your advance decision because your circumstances have changed since you made it. For example, you may have:
  • Got married or entered a civil partnership
  • Become a parent
  • Changed your family relationships in other ways.
• You need to look at your advance decision regularly to make sure it still represents what you want.

If you want to change your advance decision, you should do the following:

• Do it in writing.
• Cancel and destroy your old advance decision and make a new one if you can. This helps to avoid any confusion as to which advance decision applies.
• Tell other people such as your family or close friends, GP, carer or relevant healthcare professionals that you have made a new advance decision and that you wish to destroy the old one.
• If your advance decision includes a refusal of life-saving treatment, you must change your advance decision in writing. If you want to cancel your refusal of life-saving treatment, and are unable to do it in writing at the time, you should tell healthcare professionals who are treating you and anyone close to you as soon as possible, and try to get it put in your medical notes. Then change your advance decision in writing or make a new one as soon as you can.

It is important to make any changes to your advance decision as clear as possible because:

• by the time you have lost capacity and health professionals are trying to follow your advance decision, you will probably not be able to answer questions about it
• it will be difficult to follow your advance decision if there is confusion around it or if it is not clear whether you have altered it.

What happens if there is disagreement over the meaning of my advance decision?

• If there is any doubt about the meaning of your advance decision, the Court of Protection can decide what it means.
• This might happen, for example, if health professionals think your advance decision says one thing, but your family or close friends think it says another.

Can I set out my preferences for the future in any other way?

Yes, you can make an advance statement.

An advance statement:

• Is a written document that sets out your preferences – and not refusals of treatment. You can ask a professional to follow this document if you ever lose capacity to make these decisions yourself.
• Is not legally binding. This means that professionals and others who may be carrying out your instructions in the future will not normally be acting unlawfully if they do not follow your instructions.
• Should be looked at when thinking about your best interests. If you lose capacity to make decisions, any decisions made on your behalf should be made in your best interests. So, whoever is looking after your affairs after you have lost capacity should refer to your advance statement if you have left one.

Differences between an advance decision and advance statement

There are some important differences between an advance decision and an advance statement.

An advance decision is a written document or spoken statement that sets out your refusals of treatment. It is legally binding as long as you follow the procedures in the Mental Capacity Act and could be enforced in a court if necessary. It must be followed by professionals whenever decisions are made about your healthcare treatment after you have lost capacity.

An advance statement is a statement of your general wishes and care preferences. For example your wishes on where you would like to live, or the type of care and support you want to receive. It is not legally binding, though it should be referred to when decisions are being made in your best interests.

You can make both an advance decision and an advance statement.