Making an advance decision to refuse treatment: a living will
Creating a living will
When someone has a serious illness or a terminal diagnosis, there are a number of important decisions to be made, and documents usually need to be drawn up to reflect these decisions. One important document that should be considered in these cases is an Advance Decision to Refuse Treatment (‘ADRT’), more commonly known as a Living Will.
In this article, we will consider:
- Why an ADRT is important
- What it means for the person who creates an ADRT
- Is an ADRT legally binding
- When you may need one
- How to make one
- When it becomes valid and applicable
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What is an Advance Decision To Refuse Treatment/Living Will?
An ADRT is sometimes referred to as a Living Will, and this is a document a person can create to make clear which medical treatments they do not want to receive in the future. This means that while a person has the mental capacity to make decisions about their care, they can clearly state in a legal document that, if in future they become unable to make their own health decisions and their life is at risk, they would prefer to opt out of certain medical treatments and procedures.
In a similar way that an Advance Statement for Care allows someone to make advanced decisions about the care they wish to receive, an ADRT allows them to make an advanced decision on whether or not they will receive certain medical treatments that could prolong their life, for example they might express they do not wish to be put on a ventilator, if they are not able to breathe without help.
Who is it for?
This type of document is often put in place for someone who has been diagnosed with a serious or terminal illness, but there are a number of reasons a person might choose to create this, such as:
- If they do not want their life to be prolonged using artificial methods
- If they have seen a loved one have a difficult death due to their life being artificially prolonged, and do not want to have the same experience
- If they want to make their passing easier on their loved ones
- If they are getting older and want to be prepared for the future
How is this different from the End of Life Care Plan, Power of Attorney, and Advance Statement for Care?
When someone is living with a serious illness, there are a few documents they need to know about. Each are important in their own way, but here is an overview of what they do:
Advance Decision to Refuse Treatment (sometimes known as a Living Will): Relevant for those dealing with a serious illness that could lead to end-of-life care. This states what the person does not want to happen in the event they can no longer make decisions – such as life-sustaining treatment – and names the person who should manage their care if they are ever in a position where they can no longer make decisions for themselves.
Advance Statement for Care: Relevant for those dealing with a serious illness that could lead to end-of-life care. This states the person’s care preferences and personal wishes, and allows a named loved one to take charge of their care if they are ever in a position where they can no longer share their preferences.
End of Life Care Plan: Relevant for those with a terminal diagnosis that will require end-of-life care. This states the person’s care preferences and personal wishes, and can be continually updated as long as the person is able to contribute to the decision-making around their care needs.
Power of Attorney: Relevant for anyone dealing with a serious illness who would like to ensure a trusted loved one can make important decisions on their behalf regarding their health, wellbeing and financial matters (depending on the type of Power of Attorney put in place). This simply states the person that will be in charge of acting in their best interests when they can no longer make decisions themselves.
Is an ADRT a legally binding document?
As long as it is created in the correct way, complies with the Mental Capacity Act and witnessed (see below), then an ADRT is legally binding in England, Wales and Northern Ireland.
In Scotland, the legal status of this document can differ, so if you live in Scotland check with your GP what you need to do – in some cases the document may be given to medical professionals as guidance of your wishes, but they may not be legally bound by this.
In the rest of the UK, by creating this document you are letting medical professionals and others know that you do not want certain measures to be taken to improve your health or save your life, which is a statement of acknowledgement that you may pass away as a result of these actions not being taken. When this statement is in place, medical professionals (who know about the document) must take your wishes into account when administering any medical treatments.
When should I consider creating an Advance Decision to Refuse Treatment?
It can be difficult to know when the best time is to create one of these documents, but there are a few circumstances in which this becomes more important, such as if someone has been diagnosed with a terminal illness, or has a serious medical condition that has left them in extremely poor health, and they do not want to prolong their life artificially.
Also, if someone is getting older and does not want to prolong their life artificially if they end up in hospital or another treatment centre. You might perhaps be in palliative care but not end of life yet, and want to ensure your life is not prolonged artificially when that stage is reached.
An Advance Decision to Refuse Treatment is not a document to be taken lightly, but for some older people or those with life-limiting conditions, they may decide that if a time comes when they require extensive treatments to stay alive (but risk having an altered quality of life as a result) they would prefer to refuse such treatments.
It is important to remember you can only draft an ADRT if you have the capacity to make a decision yourself.
You do not have to tell your loved ones about your Advance Decision to Refuse Treatment, but it is highly recommended so they are not surprised by this decision if it comes up later. It is always best to let loved ones know about this, and explain why you have chosen to do this.
When does it become applicable?
An Advance Decision to Refuse Treatment is a serious document, so it makes clear that this should onlybe used in the event that you lose the ability to make your own decisions about the treatment you receive. Even if your communication is affected, if you still have the mental capacity to make your own decisions, these will be respected.
The Advance Decision to Refuse Treatment takes priority over any decisions made about your care by your loved ones, so if you also have a Power of Attorney in place for health decisions, your PoA cannot overrule your Advance Decision to Refuse Treatment if they want you to undergo any treatments you have expressly refused to receive.
If you have multiple important documents in place (such as an Advance Decision To Refuse Treatment, a Power of Attorney, and an Advance Statement for Care) with different requests in each, it may be best to involve a solicitor to make sure the appropriate wishes will be taken into account, as it may depend on which order these were created in.
What sort of things are included in an Advance Decision to Refuse Treatment?
An ADRT can cover a lot of different treatments and procedures, and it is important to be extensive, detailed and clear about the treatments you do not want. Every treatment you do not want must be named, and if a treatment is not mentioned in your ADRT, you may still be given this if medical professionals feel you need it. If you want to refuse a certain treatment in some circumstances but not others, you need to make this very clear.
Keep in mind that this document cannot be used to request any particular treatments – this will be up to the medical professionals in charge of your care – but you can choose to refuse others. It is also important to acknowledge this document cannot be used as a request for your life to be ended. Assisted dying is not currently legal in the UK, and the ADRT can only be used to say what measures you do not want taken to prolong your life if you fall ill or have an accident.
Some examples of the type of treatments you may wish to refuse are:
- Ventilation – this may be used if you cannot breathe by yourself
- Clinically assisted nutrition and hydration – this may be used if you lose the ability to eat and drink
- Antibiotics – these can help your body fight infection
Important: An ADRT is not the same as a DNR (do not resuscitate), which is a form completed by a doctor to state that someone has requested not to be given CPR (cardiopulmonary resuscitation) to prolong their life.
You can include this in your ADRT, but you should also speak to your doctor about this.
How do I make an Advance Decision to Refuse Treatment?
Like the Advance Statement for Care, an ADRT can be created by the individual themselves, or a trusted loved one if they need help doing so, and witnessed by a separate individual.
You should put your statements in writing and ensure the appropriate people have a copy, such as loved ones, your GP, and anyone else you believe may be involved in this type of care. It is a good idea to have your ADRT in a place where paramedics may find it if you end up in an emergency situation, such as in your handbag.
When creating an ADRT, it can be beneficial to include:
- Basic details such as your full name, address, and date of birth
- Your GP surgery information
- Your NHS number (if you have this)
- Any distinguishing features on your body for emergency identification purposes (scars, tattoos, etc.)
- The circumstances in which you would like your Advance Decision to Refuse Treatment to be consulted (i.e. if you can no longer make your own health decisions)
- Any and all treatments you would like to refuse – remember every treatment you do not want must be named
- The circumstances in which each of these treatments should be refused (or not)
- Some words to state that the document was written with no pressure from other people
- The date you wrote out your Advance Decision to Refuse Treatment
- Your signature, or the signature of someone who is signing on your behalf (this should be stated on the document)
- The signature of a witness – ideally someone who does not stand to benefit in your will
Where can I find more resources to create an Advance Decision to Refuse Treatment?
You can write out your ADRT in whatever way you would like, but there are templates available online to help you do this, such as this template living will form from Compassion In Dying.
If you would like further advice on creating your ADRT, you can seek help from Compassion In Dying by calling 0800 999 2434 or emailing [email protected].
There is also a wealth of information on the NHS website about the ADRT, as well as at Alzheimers.org.uk, and Macmillan.org.uk.
Home Instead is an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful at any stage of life, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.