2.4 Explain what is involved in an ‘advance decision to refuse treatment’

This guide will help you answer 2.4 Explain what is involved in an ‘advance decision to refuse treatment’.

An advance decision to refuse treatment is a legal statement made by an adult in England or Wales to refuse specific medical treatments in the future. It is sometimes called an ADRT or living will. It is used when the person later loses the mental capacity to make or communicate their own medical decisions.

The decision must set out clearly what treatment is being refused, and the circumstances in which the refusal applies. This document respects a person’s right to decide in advance and gives health professionals clear instructions to follow.

Purpose of an Advance Decision

An advance decision allows people to stay in control of their medical treatment. It is often used by people with long-term conditions, terminal illnesses, or those at risk of losing mental capacity.

Without an ADRT, healthcare professionals may provide treatments that the person might not have wanted. With an ADRT in place, the person’s wishes guide care teams, even when the person is unconscious or unable to respond.

For families, it can remove the emotional stress of having to make urgent treatment decisions during a crisis.

Legal Framework in England and Wales

ADRTs are recognised under the Mental Capacity Act 2005. This Act gives adults the right to refuse medical treatment in advance, provided they meet certain legal requirements. The law says an advance decision is legally binding if:

• The person was 18 or over at the time of making it
• The person had mental capacity at the time
• The treatments being refused are clearly described
• The ADRT applies to the situation at hand
• For life-sustaining treatment refusals, extra rules are followed

In Scotland, a similar system exists under common law called an Advance Directive. In Northern Ireland, there is no formal law yet, but written statements may be considered as part of best interests decision-making.

Mental Capacity and Decision-Making

Mental capacity means the ability to make a decision. Under the Mental Capacity Act, a person has capacity if they can:

• Understand the information given about the decision
• Remember that information long enough to make a choice
• Weigh up the information to reach a decision
• Communicate the decision in any way, such as speaking, writing, or sign language

If the person does not have capacity when making an ADRT, it will not be valid.

Refusing Life-Sustaining Treatment

Life-sustaining treatment is treatment that is needed to keep a person alive. Examples include:

• Artificial ventilation
• Cardiopulmonary resuscitation (CPR)
• Clinically assisted nutrition and hydration
• Certain emergency operations

If refusing life-sustaining treatment, the ADRT must:

• Be in writing
• Be signed and dated by the person making it
• Be signed by a witness
• Clearly state that the refusal applies even if life is at risk or shortened as a result

These conditions are important because the refusal has serious and permanent effects.

What Can Be Refused

An ADRT can be specific to certain treatments in certain circumstances. Examples include:

• Refusing CPR in the event of cardiac arrest
• Refusing artificial feeding if irreversible brain damage occurs
• Refusing dialysis if kidneys fail
• Refusing antibiotics for severe infection in the advanced stages of illness

The refusal must be written in a way that leaves no doubt about its meaning. Vague wording can cause confusion, which may result in the decision not being followed.

Process of Making an ADRT

Making an ADRT can involve:

1. Thinking carefully about health priorities and what treatments might not be wanted.
2. Speaking with a doctor or nurse to understand what particular treatments involve.
3. Writing down the refusal in clear, precise language.
4. Adding all legal requirements if life-sustaining treatment is refused.
5. Signing and dating the document.
6. Having a witness sign, if needed.
7. Giving copies to key people such as the GP, hospital team, and close relatives.

Professional health advice during this process helps ensure the decision is based on accurate medical information.

When an ADRT Applies

An ADRT only comes into force when:

• The person has lost the capacity to make or communicate medical decisions
• The circumstances described in the ADRT match the situation
• The treatments being refused are the same as in the ADRT

If the person can still make decisions, they hold the right to decide at the time, even if it differs from the ADRT.

Reviewing and Updating the Decision

An ADRT should be reviewed regularly. People’s views and medical situations can change. Regular review dates written on the document help health professionals see that it is up to date.

If changes are made, the new document should be signed and dated again. Previous versions should be destroyed to prevent confusion.

Informing Relevant People

For an ADRT to be useful, people must know it exists. Copies should be kept with:

• The GP surgery
• Any consultants or specialists seeing the person
• The local hospital
• Care home or community nursing teams
• Close family and friends

Some people choose to carry a card in their purse or wallet, or wear a medical alert bracelet that refers to the ADRT.

Difference from Advance Statements and Lasting Powers of Attorney

An Advance Statement sets out preferences and wishes about care, but it is not legally binding. Health professionals consider it, but they do not have to follow it.

A Lasting Power of Attorney for health and welfare appoints a person to make decisions for you if you lose capacity. An ADRT is your own direct decision about refusing treatments, not a decision made by someone else.

If both an ADRT and a Lasting Power of Attorney exist, the most recent decision will usually apply.

How Health Professionals Check an ADRT

Before following an ADRT, health professionals will check:

• The person was 18 or over when it was made
• It was made with mental capacity
• It is clear and specific to the treatment and circumstances
• It is signed and dated (and witnessed if life-sustaining treatment refusal applies)
• The situation matches what is written in the ADRT
• There is no evidence the person has changed their mind

If all points are satisfied, the ADRT must be followed by law.

Situations Where It May Not Apply

An ADRT may not be applied if:

• The person currently has mental capacity and expresses a different wish
• The treatment or situation is different from what is written in the ADRT
• The ADRT has been withdrawn verbally or in writing
• There are signs the person changed their mind after making it

In these cases, healthcare staff use a best interests approach, in line with the Mental Capacity Act.

Benefits of Having an ADRT

Benefits include:

• Respecting personal choice about medical care
• Reducing stress for family members at difficult times
• Giving healthcare teams clear guidance to follow
• Reducing the risk of unwanted medical procedures
• Supporting dignified and person-centred care

For staff, it can make decisions faster and clearer during emergencies.

Supporting Someone to Make an ADRT

Health and social care workers may support someone to:

• Understand the treatments involved
• Think through the risks and benefits
• Write down decisions clearly
• Talk to healthcare professionals for medical details
• Store the ADRT in accessible places

Workers should remain neutral and allow the person to decide without pressure. This respects their legal right to make personal health choices.

Storing an ADRT

The ADRT should be stored in a way that it can be easily accessed when needed. This may mean having copies in medical records, giving a copy to the ambulance service, or keeping it in a visible place at home if receiving community care.

It should also be kept safe from accidental damage or loss.

Emotional Factors

Discussing and writing an ADRT can bring up strong emotions. People may think about the end of life or serious illness, which can feel uncomfortable. Support from care workers, family, and health professionals can help.

Some people feel reassurance knowing that their personal values will still guide treatment even if they cannot speak for themselves.

Ethical Considerations for Staff

Staff may face situations where others disagree with the ADRT, such as family members wanting treatment to continue. In these cases, the law protects the ADRT if it is valid. The person’s right to decide outweighs the wishes of others.

Clear communication, respect for autonomy, and following legal duties are key.

Final Thoughts

An advance decision to refuse treatment gives people the right to decide in advance about medical care they do not want. When written correctly, it is a legal requirement for health professionals to follow it.

For health and social care workers, understanding ADRTs is part of respecting human rights and delivering lawful, person-centred care. Supporting people to make informed choices, and making sure those choices are respected, is central to good practice. Having clear processes and open discussions helps ensure that the person’s voice is heard even in the most challenging times.