An Advance Decision to Refuse Treatment (ADRT) is a binding document comprising a clear set of instructions, on the declining, withholding or withdrawing of treatment in the future. These are given whilst a person 18 years and over who still has mental capacity and in contemplation of the loss of such faculties in the future.

It enables them to refuse specified medical treatment for a time in the future when they may lack the capacity to consent or refuse that treatment.

What is Mental Capacity?

In a day-to-day context, mental capacity means the ability to make decisions or take actions affecting daily life.

Is an ADRT Legally Binding

Yes. If an ADRT exists and is valid and applicable, it has to be followed by everyone, as it is a legal document.

When Does An ADRT Become Active

The ADRT will become active at the point of the patient losing capacity. A person who has capacity continues to make their own decisions and the ADRT they have made is inactive.

An ADRT must be valid and applicable to the circumstances when the ADRT becomes active. If it is, it has the same effect as a current decision that is made by a person with capacity: healthcare professionals must follow the decision

The main reason why a patient would have Advanced Decisions drawn up is for reassurance that if a time comes when the patient cannot make the crucial choices and decisions about potential treatment and care, there is an official record of their decision.

This article explains the legal status of an advance decision to refuse treatment under the Mental Capacity Act 2005.

This information is applicable in England and Wales only. There are different rules in Northern Ireland and Scotland.

How Does A CFR Identify An ADRT As Valid?

An ADRT must be registered with the Office of the Public Guardian in order to be valid. It must be signed by the applicant, a witness, the nominated attorney(s) and also a signatory who confirms current capacity. The latter can be a health professional but may also be anybody who has known the applicant for at least two years.
The Mental Capacity Act 2005

The Mental Capacity Act 2005 was set up to provide legal rights to empower and protect people who, on a permanent or temporary basis may not have the capacity to make specific decisions for themselves at any given time.

It is geared to ensure the process that doctors and other healthcare staff as well as the patient’s family and professional carers must follow when they are called to make decisions or act on behalf of the patient.

The Mental Capacity Act Code of Practice provides the necessary guidance on how the Act should work in everyday situations.

One of the extremely important aspects is that it explains how to assess whether an individual lacks the capacity to make a particular decision.

Points of reference

Mental capacity to make treatment decisions

When a person is ill, they may be able to discuss treatment options with their doctor so that between GP and patient they can reach a decision about future care.

What happens if a person is first on the scene when the patient is unconscious or unable, on a temporary or permanent basis, to make treatment decisions or communicate their wishes?

The patient may have a learning disability, or the patient may be unconscious as a result of a sudden illness, a car accident or a stroke or even Alzheimer’s disease? It may be that the patient ‘lacks mental capacity’ to make an informed decision and/or communicate their wishes.

If an advance decision is prepared according to the requirements of the Mental Capacity Act 200 and is presented to the first responder as valid and applies to the current circumstances of the patient, the first on scene and medical professionals are bound to follow those wishes.

Whether or not the doctors believe it is in the patient’s best interests at that moment I time, it was the choice at the time of making a decision

Legally the advance decision does not have to be in writing however if the patient wants to refuse life-saving treatment, it must be in writing, it must also be signed and witnessed, and state clearly wishes that are applicable, despite the risk of life.

The first on the scene should always report the situation to control for advice and instructions

What an advance decision cannot do

It gets a tad complicated because an advance decision cannot be used to refuse treatment when the patient still has the capacity to make the decision but in that case, they don’t need the paperwork!

A patent cannot demand specific medical treatment, in fact, nobody can at that time or even in an advance decision insist on being given medical treatment that healthcare professionals would consider clinically unnecessary, futile or inappropriate.
An advanced decision cannot be used to refuse treatment for a mental disorder should the patient be detained under the Mental Health Act 1983.

Also, it cannot be used to refuse basic care that is essential to keep the patient comfortable, such as hygiene. Nor refuse the offer of food or drink by mouth. However, they can refuse food or fluid by tube…this is referred to as artificial nutrition and hydration, thus, is a form of medical treatment

The patient cannot refuse intervention such as pain relief that is aimed at keeping them comfortable.

They cannot ask for anything that is against the law such as euthanasia or assistance in taking their own life.

Is a GP forced to follow an advance decision?

Yes, all healthcare professionals must follow an advance decision if they are aware of it however it must be valid and applicable to the current situation.

What does ‘Valid’ mean? – this means the patient must have been over 18 and had the mental capacity to make the advance decision at the time it was made.

Healthcare professionals should also be certain that since the patient made it, they have not also made a Lasting Power of Attorney (health and welfare) because this gives their solicitor or legal representative the power to make the same treatment decisions described in their advance decision, this makes things very difficult.

What does ‘Applicable’ mean? – this means an advance decision must apply to the situation in question and in the current circumstances.

What is an advance statement?

An advance statement allows the patient to make more general statements describing their wishes and preferences about future treatment and care.

This could reflect their religious or other beliefs or any aspects of their life that they value.

Note: An advance statement is not legally binding but staff should take it into account if they need to make a ‘best interests’ decision on your behalf when the patient is unable to tell them what they would like.

Example of an advance statement could describe where you would prefer to live and how you would like to be supported if unable to care for yourself.

Think of creature comforts such as the type of clothes they wish to wear, food preferences, even music, TV or film preferences, whether they prefer a bath to a shower.

If they did create a Lasting Power of Attorney (LPA) health and welfare, they may have stated that they already prepared an advance statement. Then their legal representatives must take the advance statement into account when deciding what is in the patient’s best interests.

They may hold strong views about a particular situation that might arise in the future – this could relate to the need to have a limb amputated, or medical treatment that they would not wish to be given for religious or other reasons, for example, a blood transfusion

Does an advance decision need to be in writing?

No, an advance decision does not have to be in writing, unless it is a decision to refuse life-sustaining treatment.

There is no dedicated form for making an advance decision because contents will vary depending on an individual’s wishes and situation. The Mental Capacity Act Code of Practice says it is helpful to include the following:

Full name, date of birth and address;

The name, address and phone number of their GP and whether they have a copy of the document;

Include a statement that the document should be used if they ever lack the capacity to make treatment decision themselves;

A clear statement of the decision, the treatment to be refused and circumstances in which it will apply, giving as much detail as possible;

The date the document was written (or reviewed);

Their signature or that of someone they directed to sign it in the presence of the patient and on their behalf;

The signature of a person who witnessed that signature.

Advance decisions made before 1 October 2007

The part of the Mental Capacity Act relating to advance decisions came into force on 1 October 2007. An advance decision made before then (often called an advance directive or living will) will be valid if it meets requirements set out in the Act, as described in section 6. If it includes a wish to refuse life-sustaining treatment, it must include a statement that it is to apply even if your life is at risk.

The normal requirements regarding validity and applicability must be met.

Lasting powers of attorney

The Mental Capacity Act 2005 brought in a new system of Lasting Powers of Attorney (replacing the Enduring Power of Attorney that could only relate to your financial affairs).

It introduced two types of Lasting Powers of Attorney (LPA) – an LPA property and affairs, and an LPA personal welfare.

If the patient set up an LPA personal welfare, they can choose who should make decisions about their care or treatment if they are not able to do so themselves. There is a section in the personal welfare LPA document where they can specify if they want their attorney(s) to have the power to make decisions about life-sustaining treatment