A living will is an important part of end of life care, particularly if you have strong feelings about certain medical treatments. If you’d like to be refused certain procedures or medication for personal or religious reasons, creating a living will is empowering. It means you get to make decisions about your treatment even if you lose the ability to communicate them.
A ‘living will’, now called an ‘advance decision’, sets out your wishes for refusing medical treatment should you lose the ability to make decisions later in life. The full legal name is an ‘advance decision to refuse treatment’. You may see it referred to as an ADRT.
In England and Wales, this document is legally binding under the Mental Capacity Act, provided that:
- You were aged 18 or over when you made it;
- You had the mental capacity to make the decisions when you created the document;
- Doctors can be confident your wishes won’t have changed since you made it (things like new treatments or changes to personal circumstances might affect this);
- The treatments you want to refuse and the circumstances you’d like to refuse them under are absolutely clear.
Your advance decision must meet all these criteria. If you made it before October 2007 (when the Mental Capacity Act came into force) you should check it just to make sure it meets the criteria, and make a new one if necessary.
If the document will be used to refuse life-sustaining treatment there are a few more criteria it must meet:
- It must be in writing
- It must be signed and witnessed
- You must state explicitly that it applies even if your life is at risk, or may be shortened, by the refusal of the treatment.
In Scotland and Northern Ireland, an advance decision goes under a different name – ‘advance directive’ – and it is not legally binding, although it will be taken into account when decisions are being made on your behalf.
How does an advance decision work?
In an advance decision you can list certain medical treatments that you don’t want to receive. You can also specify in which situations you’d like to not receive these treatments. The document will only be used if you lose the ability to communicate your wishes.
What’s the difference between an advance decision and a lasting power of attorney?
An advance decision and lasting power of attorney are similar in that both documents are designed to ensure your needs and wishes are met once you lose the mental capacity to make decisions.
However, a power of attorney hands over the right to make decisions on your behalf to another person, whilst an advance decision involves you making these decisions yourself, just before the situation arises.
Why create an advance decision?
There are many reasons people create advance decisions. For example, you might be terminally ill and don’t want medical staff to attempt resuscitation. You may also hold strong views on certain procedures, for example being fed through a tube, or you may wish to not have certain treatments for religious reasons.
What happens if you don’t create an advance decision?
If you don’t have an advance decision, healthcare professionals will make the decision on your behalf if the need arises. They will base it on your best interests, and it’s likely your friends, family and carers will be involved. It may also require a Court of Protection Deputyship.
What can or can’t you refuse?
An advance decision can be used to refuse future life-sustaining treatments such as:
- Resuscitation
- Life support machines
- Being fed artificially
However, it cannot be used to refuse:
- Pain relief or any other care that would make you more comfortable
- The offer of food or drink through the mouth
You also cannot use an advance decision to request help to end your life, or to ask for specific medical treatments in certain situations.
How to make an advance decision
Before you make an advance decision it’s a good idea to talk to a health professional, such as your GP. This is good for several reasons:
- They can help you to understand what treatment options there are, and what the consequences would be for refusing them.
- They may be able to provide clarity on what can and can't be refused.
- It might be possible for them to record your wishes in your medical notes.
- They can ensure your wishes are laid out in a sufficiently clear way.
- They can confirm that you had mental capacity to make the decisions at the time.
Whether or not you decide to talk to your GP beforehand, it’s important to make sure they have a copy of your advance decision once it’s complete.
Putting it in writing
Although it’s only a legal requirement to put your wishes in writing if you’re refusing life-sustaining treatment, it’s strongly recommended that you do so regardless. There are no official guidelines for an advance decision, but it’s suggested to include:
- Your full name, date of birth and address;
- The name of your GP and their contact details, as well as an indication of whether they are in possession of a copy of the document;
- A clear explanation of which treatments you’d like to refuse and under which circumstances. If your wishes are vague it’s unlikely they’ll be granted. A solicitor or a GP can help make sure your wishes are stated clearly enough;
- A statement that the document should be used if you lack the capacity to make decisions;
- A signature and the date the document was made;
- A signature from a witness (this is essential if you’re refusing life-sustaining treatment, as is a statement that the document applies even if the wishes laid out in it would shorten or risk your life).
How do I know my wishes will be followed?
There are many things you can do to make it more likely that the wishes laid out in your advance decision will be followed, such as:
- Tell people that you’ve made an advance decision, and tell them where you keep it. Key people to tell might be close relatives or friends. Giving a copy to carers and anyone else regularly involved in your care can also help.
- Update your advance decision regularly.
- Your GP might be able to help – filing a copy of your advance decision in your medical notes can help ensure it is followed, and your GP may also know of local schemes to inform medical professionals about your advance decision. Your GP could also record it in your Summary Care Record, which will alert health workers in an emergency.
- Carry a card with you in your wallet or purse, stating that you have an advance decision and saying where it is.
- There are schemes, such as the Message in a Bottle scheme, that can make your advance decision easier to find and therefore much more likely to be followed.
What if circumstances change?
You can update your will or withdraw your advance decision at any time, although there is no formal process for doing so. It’s recommended that you review it every two years, signing and dating it even if no changes were made. The more recently it was reviewed, the surer doctors can be that it still reflects your wishes.
Be sure to destroy any out-of-date versions. Keep a log of who has copies, so if you do change it you can take back the old copy and give them a new one.
The situations requiring an advance decision are not pleasant to contemplate, but creating one could be invaluable in making sure your needs and wishes are met.