Advance decisions and dementia

An advance decision allows you to make decisions about refusing treatments in the future.

Some people call an advance decision a ‘living will’ or ‘advance directive’. 'Advance decision’ and ‘advance decision to refuse treatment’ are the terms used in the Mental Capacity Act 2005.

When do they apply?

Advance decisions only apply when you don’t have mental capacity to make the treatment decision for yourself.

They act as your own ‘voice’ at that time. As long as they are correctly made, your treatment refusal cannot be challenged or changed by doctors or others.

By allowing you to make an advance decision, the Mental Capacity Act 2005 gives you the same right when you don’t have mental capacity to refuse the treatment.

What treatments can you refuse?

Treatments that you can refuse include life-sustaining treatment. For example, some people may make an advance decision to refuse a blood transfusion for religious reasons.

Other examples of treatments that can be refused are:

• cardiopulmonary resuscitation (CPR),
• artificial feeding or hydration (being fed food or water through a tube)
• antibiotics.

You can do this even if your refusal of the treatment leads to a natural deterioration in your health, or even your death.

In what circumstances can you refuse treatments?

In an advance decision, you have to be specific about the circumstances in which you would refuse a specific treatment.

The circumstances in which you say that you want to refuse particular treatments are very personal to you. Everyone will say different things.

For example, a person might say they refuse artificial feeding and hydration if they have severe and permanent swallowing difficulty.

Another example might be to refuse CPR if they have a heart attack, or refuse intravenous antibiotics if they have pneumonia. 

Can you refuse a treatment in all circumstances?

You can refuse a particular treatment in all circumstances, but you must make that clear in your advance decision.

You might do this if don't want to have the treatment for religious or spiritual reasons.

There are a number of reasons why you might make an advance decision:

• If you have strong views about treatments that you don’t want, it can be reassuring to know that you have done what you can to make sure that you will not be given those treatments in the future.
• If you would prefer not to leave certain decisions about treatments you receive to healthcare professionals or to your attorney(s), if you have made a Lasting power of attorney.
• It can prompt conversations about your future care with doctors and nurses that you may not have otherwise.
• It may also prompt discussions with friends and family about what you want to happen in the future.
• It can take difficult decisions away from those close to you, who otherwise may be asked by doctors for information about what you would want to happen.

Advance decisions, when they meet certain requirements, are legally binding. This means all medical professionals, including doctors, have to follow them if they are aware of them.

Your advance decision must:

• have been made when you were aged 18 or over
• have been made when you had mental capacity to make it
• not have been made under pressure from other people
• be written down, be signed and witnessed and include a statement that it applies even if your life is at risk (if it relates to refusing life-saving treatment).

If your advance decision is not made correctly, medical professionals will not have to (or be able to) follow it. 

How can I make sure my advance decision meets the requirements?

You advance decision must be both ‘valid’ and ‘applicable to the treatment’:

• To be valid, your advance decision must not have been withdrawn by you at any time when you had mental capacity to do so, and:
• you mustn’t have done anything clearly inconsistent with it which suggests you have changed your mind. For example, if you have agreed to a blood transfusion, after making an advance decision saying you would want to refuse one in all circumstances
• the advance decision has been made after you have made an LPA for health and welfare. If you make an advance decision after appointing an attorney for health and welfare, and the two documents cover the same decision, then your attorney must follow the advance decision.

Making a successful advance decision (that can’t be challenged) is hard. It's difficult to predict every situation and treatment that might happen, and to cover all of them in an advance decision.

This is why you may want to also write an advance statement of wishes. When used together, they may give others making decisions on your behalf a better sense of what you would want.

When an advance decision won't apply

Your advance decision will not be applicable to the treatment, if:

• you have not specifically mentioned the treatment in your advance decision, or
• the circumstances you have specified do not exist. If you specify more than one circumstance under which you would refuse a specific treatment, all the circumstances you have specified must be happening at the time. Or
• there are reasonable grounds for believing that something has happened that you didn’t anticipate when you made the advance decision, and that would have affected your decision. For example, if there have been medical developments since you made the decision that would have affected your decision if you had known about them at the time. Or
• you have mental capacity to agree to or refuse the treatment at the time.

This means that you have to choose what you say carefully. The wording of an advance decision cannot be vague, and must be specific about treatments and the circumstances. 

There are some limits to the kinds of treatments and situations an advance decision can cover. It cannot be used to:

• refuse treatment if you still have the capacity to give or refuse consent n refuse basic care that is essential to keep you comfortable, such as washing or bathing
• refuse food or drink by mouth, although it can be used to refuse being fed or hydrated through a tube (artificial feeding or hydration)
• refuse things that are designed solely to keep you comfortable – for example, painkillers (which relieve pain but do not treat the underlying condition)
• demand specific treatment
• refuse treatment for a mental disorder in the event that you are detained under the Mental Health Act 1983 (with the exception of electro-convulsive therapy (ECT) which you can use an advance decision to refuse). Your rights are no different than if you had capacity to refuse medical treatment. Under the Mental Health Act 1983 you can, in some circumstances, be treated against your will. 
• request something that is against the law, such as euthanasia or assisting you in taking your own life
• refuse a particular place of care, such as a care home – it is only about treatments.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders

It is easy to confuse advance decisions with ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) orders because resuscitation is something that can be refused in particular circumstances in an advance decision. However they are different things.

A DNACPR order is made by medical professionals, and an advance decision is made by you. Medical professionals must talk to you, unless this is inappropriate or not possible. They must talk to anyone close to you if you request this, or do not have the capacity to be consulted on this before putting a DNACPR order on your medical file. You can discuss DNACPRs with your doctor if you wish.

There is no standard way that DNACPR orders are made and recorded nationally, so the process may be different in different areas.