What is an advance decision to refuse treatment?
An advance decision – also often known as a living will – is a legally binding way to tell people about specific medical treatments that you don’t want to receive in the future. It will be used if you’re unable to make decisions for yourself or communicate them to others – in other words, if you lose your mental capacity.
This is known legally as making an advance decision to refuse treatment (ADRT). While it's often referred to as a living will, that is not a legally recognised term.
In Scotland, it's known as an advance directive.
There are different reasons why you might consider creating an advance decision. It could be that you have a terminal or incurable illness and want to make sure your wishes are known. For example, there may be circumstances in which you don’t want medical staff to attempt cardiopulmonary resuscitation (CPR). Or you may hold strong views or beliefs about certain medical treatments, such as being fed by tube or receiving a blood transfusion.
For others, an advance decision can form one part of wider plans for end of life care. It can also help an appointed representative, known as an attorney, to make decisions on your behalf.
What can you put in an advance decision or living will?
You can use an advance decision to refuse specific medical treatments in the future. This includes life-sustaining treatments, such as:
- using a life support machine to help you breathe
- being resuscitated if your heart stops
- being fed artificially, for example through a tube into the stomach.
You can’t use an advance decision to:
- refuse care that will make you comfortable, such as pain relief
- refuse the offer of food or drink by mouth
- ask for specific medical treatments – you can’t insist on a treatment that your doctors believe to be unnecessary, futile or inappropriate
- nominate someone to make decisions on your behalf – you can only do this through a Lasting Power of Attorney for health and welfare
- request help to end your life.
Is an advance decision legally binding?
An advance decision is legally binding under the Mental Capacity Act in England and Wales, as long as it meets certain conditions. These include that:
- you were aged 18 or over when you made it
- you had mental capacity when you made it
- doctors are confident that you haven’t changed your mind since making your decision
- it clearly states what treatments you want to refuse – you need to be specific about these
- it explains the circumstances where you’re refusing treatment. For example, you could state that you wish to refuse certain treatment if you have a stroke or heart attack.
If you’re using your advance decision to refuse life-sustaining treatment, it must also:
- be in writing
- state that it applies even if your life is at risk or shortened as a result of refusing treatment
- be signed and witnessed.
In Scotland and Northern Ireland an advance decision is not covered by an act of law. But it should be taken into account when decisions are being made on your behalf.
A living will is the old name for an advance decision. If you made a living will before October 2007, when the Mental Capacity Act came into force (see below), then it may not meet the current criteria to be legally binding. If that’s the case, you should make a new advance decision.
Discussing your choices with a medical professional
It’s a good idea to talk to your GP or other health professionals before you write an advance decision. They can help you understand what it will mean to refuse certain treatments. They will also help you phrase your wishes in a way that’s clear to healthcare professionals, and they may be able to record your wishes in your medical notes. A GP can also verify that you had mental capacity when you wrote your decision.
Even if you don’t want to talk to your doctor, it’s important to give them a copy of your advance decision so that they are aware of your wishes.
How is an advance decision made?
Legally, you don’t have to put your advance decision in writing, unless you’re refusing life-sustaining treatment. But the NHS strongly recommends that you do make a written document. This is important because it helps everyone to be clear about your preferences and makes it more likely that your wishes will be followed.
There are no standard forms for an advance decision, but guidelines suggest you should:
- include your full name, date of birth and address
- provide the name and contact details of your GP and indicate whether they have a copy of the document
- explain clearly what treatment(s) you are refusing and in what circumstances – general statements about not wanting to be treated are not enough
- state that the advance decision should be used if you lack the capacity to make your own decisions
- sign and date the document
- get a witness to sign it – you are legally required to do this if you’re refusing life-sustaining treatment.
You may also find it helpful to talk to a solicitor. They can help you explain your wishes clearly so that there is no confusion about what you mean.
Which? Wills offers a dedicated service to help you create a living will.
How do I know my advance decision will be followed?
It’s important to make sure that relevant people involved in your care are aware of your advance decision. There are various steps you can take to ensure this.
- Tell relatives, carers or friends that you have made an advance decision and where you keep it. They are likely to be contacted in the event of an emergency.
- Ask your GP to put a copy with your medical notes. Also ask your GP if there are any schemes in your area to inform medical professionals about your advance decision. These vary across the country.
- Ask your GP to have it recorded in your Summary Care Record (an electronic record of patient information), if you have one. This will alert health workers in an emergency that you have an advance decision in place.
- Carry a card in your purse or wallet that says you have one and where it is.
- Give a copy to anyone regularly involved in your care – a consultant or carer, for example.
- Use a scheme such as the Message in a Bottle scheme, sponsored by the Lions Club, to record details of your advance decision. With this scheme, you can record personal and medical information and store it in a distinctive green-and-white bottle that's kept in your fridge. It can then be easily discovered by any medical staff or emergency services who are called to your home in an emergency.
Before following your instructions, a doctor will need to be confident that your advance decision is relevant to the current situation and that you now lack the capacity to make decisions about your treatment. They will also consider whether there are any new developments that you weren’t aware of at the time that might have affected your decision, such as new forms of treatment or a change in your personal circumstances.
Can I update or withdraw an advance decision?
There’s no formal process for updating or withdrawing a decision, but you can do this at any time. It’s a good idea to review your advance decision every two years, or if there is any change in your circumstances. If you review it regularly doctors will be more confident that the decision remains ‘valid’.
If you don’t want to make any changes you should still re-sign and date it. Make sure you share the latest copy with everyone who had an earlier one and destroy any previous versions.
What happens if I don’t have an advance decision?
If a time comes when you lack mental capacity and you don’t have an advance decision, healthcare professionals will make decisions based on your ‘best interests’. That should involve talking to your family, friends and carers to find out about your beliefs and wishes.
If you’d like your loved ones to make those decisions on your behalf you need to set up a Lasting Power of Attorney for health and welfare. This needs to include specific authority for the attorney to make decisions to consent to or refuse life‐sustaining treatment.
Advance decisions and emergency care plans: what’s the difference?
If you have complex health needs, a life-limiting condition or an illness that may suddenly deteriorate, your health team may have talked to you about an emergency care plan (ECP). These are drawn up by health professionals in conversation with you, unlike advance decisions, which you draft yourself. They provide an easily accessible summary of treatment recommendations for use in an emergency.
If an ECP has been created for you, make sure it includes details of your advance decision.
The Mental Capacity Act
Mental capacity refers to your ability to understand complex choices and make important decisions. The Mental Capacity Act is designed to protect people in England and Wales who have lost mental capacity. It defines when someone is deemed to have lost mental capacity and explains:
- who can make decisions on an individual’s behalf
- under which situations they can make these decisions
- how they should go about making them.
For more information on what it covers and the equivalent legislation in other parts of the UK, read our article on the Mental Capacity Act.
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