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End of life care

Advance decision (living will)

You can read this whole page or go directly to the relevant section by clicking on the links below:

What is an advance decision?

Who makes an advance decision?

Is an advance decision legally binding?

How does an advance decision help?

Does it need to be signed and witnessed?

Who should see my advance decision?

What is an advance decision?

An advance decision (sometimes known as an advance decision to refuse treatment, an ADRT, or a living will) is a decision you can make now to refuse a specific type of treatment at some time in the future.

It lets your family, carers and health professionals know whether you want to refuse specific treatments in the future. This means they will know your wishes if you are unable to make or communicate those decisions yourself.

The treatments you are deciding to refuse must all be named in the advance decision.

You may want to refuse a treatment in some situations, but not others. If this is the case, you need to be clear about all the circumstances in which you want to refuse this treatment.

You can refuse a treatment that could potentially keep you alive (known as life-sustaining treatment). This includes treatments such as ventilation and cardio pulmonary resuscitation (CPR), which may be used if you cannot breathe by yourself or if your heart stops. You may want to discuss this with a doctor or nurse who knows about your medical history before you make up your mind.

An advance decision is not the same as an advance statement. Read about advance statements.

Deciding to refuse a treatment is not the same as asking someone to end your life or to help you end your life. Euthanasia and assisted suicide are illegal under English law.

Who makes an advance decision?

You make the advance decision, as long as you have the mental capacity to make such decisions. You may want to make an advance decision with the support of a clinician.

If you decide to refuse life-sustaining treatment in the future, your advance decision needs to be:

  • written down
  • signed by you
  • signed by a witness

Life-sustaining treatment is treatment that replaces or supports ailing bodily functions. For example, a mechanical ventilator can help you to breathe, or taking antibiotics can help your body fight infection.

If you wish to refuse life-sustaining treatments in circumstances where you might die as a result, you need to state this clearly in your advance decision. Life-sustaining treatment is sometimes called life-saving treatment.

You may find it helpful to talk to a doctor or nurse about the kinds of treatments you might be offered in the future, and what it might mean if you choose not to have them.

Is an advance decision legally binding?

Yes it is, as long as it:

If your advance decision is binding, it takes the place of decisions made in your best interest by other people. An advance decision may only be considered valid if:

  • you are aged 18 or over and had the capacity to make, understand and communicate your decision when you made it
  • you specify clearly which treatments you wish to refuse
  • you explain the circumstances in which you wish to refuse them
  • it is signed by you and by a witness if you want to refuse life-sustaining treatment
  • you have made the advance decision of your own accord, without any harassment by anyone else
  • you haven't said or done anything that would contradict the advance decision since you made it (for example, saying that you have changed your mind)

How does an advance decision help?

As long as it is valid and applies to your situation, an advance decision gives your health and social care team clinical and legal instructions about your treatment choices.

An advance decision will only be used if, at some time in the future, you are not able to make your own decisions about your treatment.

Does it need to be signed and witnessed?

Yes it does, if you are choosing to refuse life-sustaining treatment – in which case, the advance decision must be written down, and both you and a witness must sign it. You must also include a statement that the advance decision applies even if your life is at risk.

Who should see it?

You have the final say on who sees it, but you should make sure that your family, carers, or health and social care professionals know about it, and know where to find it. You can keep a copy in your medical records.

More information

Healthtalk.org has videos and written interviews of people talking about advance decisions to refuse treatment.

NHS Choices has more information on your right to refuse future medical treatment.

You can read Macmillan's information on making an advance decision.

The Dying Matters website includes information on legal and ethical issues around advance care planning, including advance decisions.

Page last reviewed: 09/09/2014

Next review due: 09/09/2016

Comments

The 2 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Michel Stone said on 10 September 2012

'Sometimes you may want to refuse a treatment in some situations but not others. If this is the case, you need to be clear about all the circumstances in which you want to refuse this treatment. '

That is the exact wording used in some recent guidance about Advance Decisions (Planning for your future care: a guide, published by the National End of Life Care Programme, ISBN: 978 1 908874 01 6, publication date: Feb 2012)., and I surveyed a number of people about whether that meant you could just say 'I refuse 'treatment X'' or if you always needed to also specify 'circumstances'. Among experienced nurses, including nurse lecturers, some say 'if you don't mention circumstances, then the refusal is not dependent on the circumstances' and others say 'you must always specify circumstances'.

From reading the sentence
'Sometimes you may want to refuse a treatment in some circumstances but not others. If so, you must specify all the circumstances in which you want to refuse this particular treatment.'

I perceive it to mean there are the two options:
of EITHER simply saying 'I refuse treatment X', OR of saying 'I refuse treatment X if ..... is the situation' .

Thanks
Jo
Nurse/Healthcare lecturer

Hi Mike,
I have been a Nurse, Care manager, and am now a full time college lecturer in Health and Social Care.
I interpret the wording as ' you must ALWAYS specify BOTH the treatment being refused, and also the circumstances in which your refusal is to apply'.

Kind regards
Ali

I understand this as, it is necessary to state the circumstances in which you will be refusing specific treatment.

Kind regards
Sara XXXXX
Assistant Chief Nurse/Head of School

This issue over whether or not circumstances must be stated, needs urgently sorting out (Mike Stone stating) and if the guidance would be clearer - and state that an ADRT is a refusal, and the circumstances are only necessary if you intend to qualify your refusal in some way - then ADRTs might work !

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Michel Stone said on 14 August 2012

On this page:

http://www.nhs.uk/chq/pages/899.aspx?categoryid=68&subcategoryid=156

it says that an Advance Decision (ADRT) can state what treatments you would accept. This is clearly legally wrong - the MCA is very explicit, that an ADRT is an extension (into anticipated mental incapacity) of the legal right to refuse treatments.

There are also some serious issues about whether an Advance Decision must mention 'circumstances' (the Act uses the word 'may' for the specifying of circumstances, and 'must' for the specifying of the treatment being refused), and the meaning of circumstances (and the Act doesn't say circumstances need be clinical - 'I'm refusing CPR as soon as a Will of mine dated after 2/4/2003 has been signed and witnessed' appears to be a perfectly good 'qualifying circumstance').

And various Regions have decided that 'A valid and applicable ADRT refusing CPR is legally binding, but a verbal refusal of CPR is not legally binding'. This is an over simplification of the MCA - the Act allows for an ADRT to be expressed in lay language, and an ADRT ceases to exist if its author has done anything inconsistent with the ADRT.

So if I'm discussing CPR with my clinicians at 8-00 pm, at 8-15 pm I verbally tell them I'm refusing CPR, and I arrest at 9-00 pm, it does not matter whether or not I also write an ADRT. If I wrote an ADRT, I would of course check that the clinicians understood my wording - then the clinicians would perforce be guided by my verbal explanation of the wording on the ADRT (the other possibility, of the wording being different from my instruction, would render the Advance Decision invalid {you cannot be over-ruled by your own ADRT}).

I am deeply 'miffed' by this - current clinically-authored guidance about ADRTs (and especially about the situation of an arrest directly from mental capacity) is seriously flawed.

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