What is an Advance Decision & Why Do You Need One?

The last couple of posts have focused on Wills and Lasting Powers of Attorney so today we’re completing this legal trifecta by talking about Advance Decisions. Specifically, we’ll be looking to answer, What is an Advance Decision?’, ‘Why do you need one?’, and, How do you make one?’

What is an Advance Decision?

An Advance Decision, or to give it it’s longer and proper title, ‘Advanced Decision to Refuse Treatment’ is a legal document in England and Wales.

It states treatments you do not want to be administered to you should you lose capacity and/or be unable to communicate your wishes.

When discussing Powers of Attorney in the previous post, we talked about how they enabled you to legally transfer the ability to give someone else permission to speak for you and in your best interests, if for some reason you were unable to speak for yourself.

An Advance Decision is similar in that it sets out the clinical interventions you wish to refuse, should a situation occur that results in you not being able to speak for yourself.

An Advance Decision acts as a guide, signposting to others that you do not wish to receive specific treatments but it is more than that; as a legal document, once the medical profession is aware of it, whatever it states must be adhered to.

Examples of the kinds of treatments that you may wish to refuse are things like ventilation, antibiotics or clinically assisted nutrition and hydration.

It’s really important to point out that when it comes to your clinical care, you cannot demand treatment. You cannot say, ‘If this situation occurs in my life, then I absolutely want you to do this, this and this. I want you to administer this treatment, these drugs’, and so on. That’s not allowed.

But what you can do is state the treatments you do not want. You can refuse treatment. And that’s where an Advance Decision comes into play. It contains your words, your wishes.

Essentially you are speaking on behalf of a future self that for whatever reason is unable to do so.

Why do you need an Advance Decision?

It would probably be fair to say that the word ‘need’ is incorrect in its usage here. You don’t ‘need’ an Advance Decision.

Most people don’t have one. Only four percent of people in the UK actually have an Advance Decision. That maybe because they’re unaware that such a thing exists, or it may be that they are aware of it, but feel it’s not right for them.

Not everyone is comfortable with the idea of refusing treatment. Many people, if they find themselves in a situation where they have lost capacity or can no longer communicate their wishes, would want the clinical profession to do absolutely everything possible to try to restore capacity and make them as well as possible. They wouldn’t want any treatments refused to them.

But for some people, an Advance Decision allows them an extra element of having a say in their care. If they are aware that in a given situation they really wouldn’t want a particular intervention, and perhaps they don’t have a Lasting Power of Attorney so nobody else has the legal right to speak on their behalf, then an Advance Decision can be used to inform the treatment they do receive.

For others, an Advance Decision enables them to take more active ownership of their future health and care and state their wishes in a written document, should circumstance dictate that they are unable to do so verbally at the time.

Therefore, it’s not so much that you ‘need’ an Advance Decision but more about raising awareness that this option exists if you would like to utilise it. It’s definitely something I would encourage everyone to consider, especially if they’ve never heard of it before.

So, do you need an Advance Decision? Only you can answer that but it’s certainly something you may want to think about if you haven’t previously done so.

How do you make your Advance Decision?

It’s important to know that an Advance Decision in no way negates a Lasting Power of Attorney. The two documents work in sync together and one isn’t more important than the other. It’s likely that if you have one, you probably should consider the other as they can work synergistically.

Making an Advance Decision is actually pretty simple, especially considering it is a legal document. Whilst it will vary from person-to-person, most Advanced Decisions are 1 or 2 pages long, setting out the treatments that you wish to refuse in the future should you be unable to communicate your wishes at the point.

There are three criteria that must be met to ensure that your Advance Decision is legal:

Criteria 1:

The first criteria in order for your Advance Decision to be legal is that it must be written down. Tattooing ‘I do not wish to be resuscitated’ on your chest is not a legal document! It can be handwritten or typed but you do need an actual written, physical document.

Criteria 2:

You also need to ensure the document is signed, dated and witnessed. Anyone can witness it but ideally, someone unrelated to you and has no personal, or vested, interest in your decision is best if possible.

Criteria 3:

The third, and probably the most important criteria to ensure your Advance Decision is legal, is that it must include a specific phrase. Having listed the treatments you wish to refuse, this must be followed with the words: ‘I maintain this refusal, even if my life is shortened as a result’. 

It is the combination of these three things:

it being written down;

• signed, dated and witnessed;
• the specific phrase, ‘I maintain this refusal, even if my life is shortened as a result’
• that makes an Advance Decision a legal document.

Advanced Statement

An Advance Statement is a document that is written in conjunction with the Advance Decision. It is not a legal document but provides the context for making one. The Advance Statement can be anything from a couple of paragraphs to a couple of pages of text, outlining your thinking and reasons for making an Advance Decision.

It is written in your own words, in your own style so that should it ever be required, the people around you – your loved ones as well as the clinicians that are caring for you – can receive some insight into how you would most likely wish to be treated in that situation. It helps them to understanding what you would want for your care at that time.

So, the Advance Decision is the legal document and the Advance Statement is an accompanying document. You put the two together and then…

… you make sure people know about it!

You can do this in a number of ways but the key is to ensure you have multiple copies. For example, one copy of your Advance Decision (complete with Advance Statement) should be given to your doctor and/or GP.

Your loved ones, close family and friends, the people you’re living with – the people that are closest to you – should all either have a copy and/or know that it exists and be able to access it quickly and easily.

There are also things you can do to make your Advance Decision ‘visible’ such as the Lions Club ‘Message in a bottle’ initiative.

You carry your Advance Decision and Statement in your bag. You have a copy in the car. You have one in the fridge for people to find. You leave it in as many places as possible so that should something happen to you, it’s very evident very quickly that it exists and people can act on it.

If you are looking to make your Advanced Decision do this, then there are organisations and websites that have templates and are really helpful in offering personalised individual support, if you need it.

Two in particular are: Advance Decision Assistance and Compassion in Dying

One last, important thing to mention, is that an Advance Decision can be amended, or revoked, at any time so it is always possible to change your mind if you later decide you no longer want one.

If you are interested in learning more about Advance Decisions, what’s involved and how to make one, then either of these organisations will definitely provide you with a great starting point to do so.

Final Thoughts

As mentioned, an Advance Decision in no way conflicts with having a Lasting Power of Attorney. This is true, but something to be aware of is that, generally speaking, whichever document was made most recently takes precedence.

Recognising that everyone’s individual circumstances will vary, my recommendation is that if are clear on wanting an Advance Decision, make your Powers of Attorney first and then make your Advance Decision. It would then be the document most recently created and therefore it would be your words that would take precedence over somebody else’s.

An Advance Decision is an important and powerful document, but it is not particularly well known. Whilst it may not be right for everyone, it is important to raise awareness that it exists so that those who feel they would benefit from it have the confidence and information they need to go ahead with making one.

It is only right to understand and respect that not everybody will want to complete an Advance Decision. But it is only possible to act on things that we know about.

Hopefully, this article has helped you to feel a little more confident in understanding what an Advance Decision is, why you may want one, and how to make one.

Until next time, take care.