Whatever your current state of health, there may come a time when you are unable to make independent decisions about your medical treatment and welfare or express yourself clearly.
This article looks at how you can plan for that eventuality, and considers some of the questions you may have.
Who is this guide for?
What is an Advance Decision document?
An Advance Decision (otherwise referred to as an Advance Decision to Refuse Treatment ADRT or Living Will) allows you to make known what medical interventions and treatments you would not want to receive in the event that you are unable to communicate or make decisions because you lack mental capacity - even if this results in your death.
Advance Decision forms are freely available from healthcare institutions and websites (see Useful Resources below).
If you are planning well ahead, it's a good idea to check this document periodically as your views on what your end-of-life treatment should look like, and its impact on your circumstances, may change.
Consult a healthcare practitioner
You could also draw up an Advance Decision yourself, but you may want to consult your doctor and a solicitor to ensure you haven't overlooked something vitally important and that your wishes are clearly understood.
Why do I need an Advance Decision document?
An Advance Decision is a legal method for ensuring that your end-of-life care proceeds precisely as you want it to, even if you no longer have the mental capacity to make decisions about your treatment.
Is an Advance Decision document the same as an Advance Statement?
No. An Advance Decision is not the same as an Advance Statement.
An Advance Decision is your decision to refuse types of life-sustaining treatment, even if it means you might die.
An Advance Statement lets you set down your preferences for how you would like to be cared for when you no longer have the mental capacity to make decisions for yourself.
Advance Decision directions for your treatment
You need to be very clear about all the circumstances in which you wish to refuse treatment. That's why it's prudent to talk through possible scenarios and options with your doctor. For example, if your breathing stops, you can ask not to be resuscitated, but your decision may depend upon which medical conditions you are suffering at the time.
It's important to understand that an Advance Decision cannot be used to demand that your life be ended, even if your suffering is unbearable. Assisted dying is illegal in the UK.
Is an Advance Decision document legally binding?
Everyone involved in your care is legally bound by the Advance Decision, providing it:
The equivalent term for an Advance Decision in Scotland is known as an Advance Directive, and in Northern Ireland there are slightly different arrangements that cover the same situation.
The document will need to be signed and dated by you while you are still mentally capable and signed and dated by an adult witness who is also deemed mentally capable.
You can withdraw or change an Advance Decision at any time, providing you still have the capacity to do so.
Appointing an Advance Decision 'agent'
An 'agent' is someone who will act in accordance with your wishes. You will need to appoint a primary and also a secondary agent if the first person cannot be reached. This person should be aged 18 or over (16 or over in Scotland).
You should make them aware what your wishes are and confirm that they are fully accepting of them to avoid any issues later on. Your agent could be your next of kin, doctor, or healthcare practitioner. If you are under the care of a hospice, request a copy of their Advance Decision (or equivalent) document and ask them for help in completing it, if you need to.
What's the difference between an Advance Decision document and a Health & Welfare Lasting Power of Attorney?
An Advance Decision document outlines in detail the end-of-life treatment choices you have made for yourself, which may specify a variety of situations.
A Health & Welfare Lasting Power of Attorney (LPA) enables you to appoint one or more people you trust ("attorney") to make decisions for you and act in your best interests for your daily care and healthcare needs when you no longer have the capacity to do that for yourself.
Crucially, an LPA cannot override the legality of an Advance Decision. If a decision needs to be made about something that's not included in your Advance Decision, then your attorney will still be able to make decisions on your behalf.
Do I need an Advance Decision document if I have a Health & Welfare Lasting Power of Attorney?
Having both an Advance Decision document and a Health and Welfare Lasting Power of Attorney is sensible because they fulfil different purposes.
An Advance Decision is much more comprehensive than a Health & Welfare Lasting Power of Attorney. An Advance Decision document provides your health and welfare attorney with something in writing that they can use if they need to act on your behalf.