Advance Decision To Refuse Treatment

Overview

An advance decision to refuse treatment (sometimes called a living will) is a legal document that lets you say in advance which medical treatments you would not want in the future. It is used only if you become unable to make or communicate decisions for yourself, for example if you are unconscious or have severe dementia. It helps doctors and family know your wishes and respect them.

It is not something everyone does, but many people with long-term conditions or older adults find it useful to plan ahead. In the UK, healthcare teams increasingly ask about advance care plans during routine care.

Anyone who wants to take control of their future medical care can make one. It is especially relevant for people with progressive conditions like dementia, serious lung or heart disease, or those who have strong feelings about certain treatments.

Symptoms

Common symptoms

• This is not a medical condition, so there are no symptoms. It is a planning document you create while you are well or while you still have mental capacity.

Symptoms in children

• Advance decisions are only for adults aged 18 and over. For children, parents and doctors usually make treatment decisions together.

Symptoms in older adults

• Older adults may think about making an advance decision after receiving a new diagnosis, moving into a care home, or experiencing a stay in hospital.

Causes

Main causes

• People write advance decisions because they want to avoid treatments they would find burdensome or undignified if they became seriously ill.
• They may have a terminal illness, a progressive brain condition, or simply want to plan ahead for unexpected events.
• Some people have religious or personal beliefs that affect which treatments they would accept.

Risk factors

• Getting older, having a chronic illness, or being diagnosed with a condition that might affect your ability to make decisions in the future.
• Living alone or having no close family members to speak for you.
• Having strong views about particular treatments, such as cardiopulmonary resuscitation (CPR) or artificial feeding.

When to see a doctor

See a doctor urgently if:

• If you are in the middle of a medical emergency, do not try to create or discuss an advance decision. Call emergency services.

Book a routine appointment if:

• Talk to your GP or healthcare team when you are thinking about making an advance decision. They can help you understand what it means and how to record it properly.
• Also discuss it with your family or anyone you trust, so they know your wishes.

Diagnosis

An advance decision is not diagnosed. It is a legal document you create yourself, usually with guidance from a healthcare professional or a recognised advance care planning service.

Tests that may be done

• No medical tests are needed.
• Your GP or healthcare team may ask you some questions to make sure you have mental capacity to make the decision.
• You may be asked to sign the document in the presence of a witness.

What to expect at your appointment

You will discuss your values and wishes with your GP or another healthcare professional. They can help you write down exactly which treatments you want to refuse. Once signed and witnessed, a copy should be kept in your medical records and given to family members or carers.

Treatment

An advance decision is not a medical treatment. It is a way to guide your future care. If you become unable to make decisions, doctors must follow a valid advance decision, especially if it refuses life-sustaining treatment. You can be specific about treatments you do not want, such as CPR, ventilation, or artificial hydration.

Self-care at home

• Talk to your family and loved ones about your wishes so they understand.
• Keep your advance decision in a safe place and make sure your GP has a copy.
• Review it regularly, especially if your health or preferences change.
• Tell someone you trust where the document is kept.

Medical treatments

No medications or procedures are used to treat an advance decision. The document simply records your treatment refusals. Your healthcare team will follow these wishes when appropriate and provide the care you do want, including symptom relief and comfort measures.

When is surgery considered?

This is not applicable to an advance decision. If you need surgery, your doctors will discuss the risks and benefits with you at that time, as long as you can make decisions. If you cannot, your advance decision would be taken into account for any life-sustaining treatments.

Living with this condition

Once you have made an advance decision, it does not change your daily life. It simply gives you peace of mind. Keep the document updated and make sure your medical team and family know about it.

Lifestyle tips

• Carry a card or note in your wallet saying you have an advance decision and where it is kept.
• Review your decision at least once a year or after major life events.
• Discuss your wishes with your GP when you have appointments.
• Give a copy to your next of kin or a trusted friend.

Diet and exercise

There are no special diet or exercise requirements related to an advance decision. Maintain a healthy lifestyle as you normally would, and speak to your GP if you have any health concerns.

Mental health and emotional wellbeing

Thinking about future illness and loss of capacity can be upsetting. It is normal to feel anxious or sad. Talking to family, friends, or a counsellor can help. If you feel very distressed, speak to your GP or local mental health service for support.

Prevention

You cannot prevent the possibility of becoming unable to make decisions in the future, but you can prepare for it. Making an advance decision is one way to ensure your wishes are known and respected.

Vaccines

There are no vaccines related to advance decisions. Stay up to date with recommended vaccinations for your general health.

Screening programmes

No screening is needed for an advance decision. However, routine health checks and screenings for conditions like high blood pressure or diabetes can help you stay well and plan ahead.

Complications

If left untreated

• This is not an illness, so 'untreated' does not apply. However, if you do not make an advance decision and later lose capacity, doctors may provide treatments you would not have wanted.
• Family members may disagree about what you would have chosen, causing stress and uncertainty.
• Emergency responders may perform CPR or other life-sustaining measures because they do not know your wishes.

Long-term outlook

Planning ahead can bring peace of mind to you and your family. A valid, well-written advance decision helps ensure your care respects your values. Even if you never need it, it is a meaningful step in taking control of your future healthcare.

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