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An Advance Decision to Refuse Treatment is a set of instructions from you to your medical team. It's a way of making sure that everyone knows how far you want treatment to go when you can’t make decisions for yourself.
The ways people can plan ahead vary across the four nations of the UK (England, Scotland, Wales and Northern Ireland) and there are also some legal differences. This booklet is about the ways people can plan ahead if they live in England and Wales. If you live in Scotland or Northern Ireland you should ask a healthcare or legal professional to give you information that’s relevant to that country.
An Advance Decision to Refuse Treatment is a set of instructions from you to your medical team. It sets out specific circumstances when you would:
For example, you may decide that if you became seriously ill with a life-threatening condition, you wouldn’t want to be kept alive by being fed or given fluids artificially (feeding tubes and drips). Or, you may not want to continue being fed or given fluids artificially if your condition were to worsen to a particular point. Another example is that you may not want to be given antibiotics for an infection if you’re only expected to live for a few days (see below for written examples of advance decisions to refuse treatment).
An Advance Decision to Refuse Treatment can’t include a request for treatment or to have life ended. You can request treatment in your Preferred Priorities for Care document| if you wish.
An Advance Decision is a way of making sure that everyone knows how far you want treatment to go when you can’t make decisions for yourself. It will only be used if, at some time in the future, you’re unable to make your own decisions about your treatment.
It’s important to be as clear as possible about:
This is to make it clear to anyone reading the document what your wishes are. It will also help them decide whether your Advance Decision to Refuse Treatment meets all the legal requirements of the Mental Capacity Act 2005|.
If you make an Advance Decision to refuse a particular treatment, this doesn’t mean that you won’t still be given the best possible care, support, comfort and medicines to control your symptoms.
An Advance Decision to Refuse Treatment is legally binding if it meets the criteria of the Mental Capacity Act 2005. This means it must be respected by your doctors and those involved in your care.
It can only be made by someone aged 18 or over who has the mental capacity to make the decision.
Before making an Advance Decision to Refuse Treatment, it’s important to discuss the decisions you’d like to make with one of the healthcare professionals involved in your care. This may be your GP, a doctor or nurse specialist who’s looking after you at the hospital. They will be able to tell you what the likely effects of stopping a treatment are and will make sure your Advance Decision meets legal requirements.
Although an Advance Decision can be made verbally (spoken), it’s better to write it down. This helps avoid confusion later on.
There are certain situations where the law says an Advance Decision must be in writing. For example, an Advance Decision that refuses treatment to keep you alive (life-sustaining treatment, such as resuscitation or being put on a ventilator - breathing machine), must be written, signed by you or someone else in your presence and witnessed. It must indicate exactly what treatment you want to refuse and in which situation. For example, you may want to refuse a treatment in a particular situation but not in another. It must also contain a statement such as, ‘I refuse this treatment even if my life is at risk as a result’ to make it legal.
There’s nothing in law that says what must be included in an Advance Decision to Refuse Treatment - unless it relates to life-sustaining treatment. However, it’s advisable to include the following:
Occasionally, a person may wish to refuse a specific treatment in all circumstances rather than identifying specific circumstances. For example, you may want to refuse a specific medication in all circumstances if you have an allergy or a religious objection to it.
If you want to make a statement about refusing a treatment in all circumstances you should talk this through with a healthcare professional first. They will make sure that your Advance Decision to Refuse Treatment will be clear to any health professional who may need to use it in the future.
You can write your own Advance Decision, but you may find it easier to use one that comes in a set format. There are various organisations that have created forms for people to use. Hospitals and hospices often have written information and forms that people can use to prepare their own Advance Decision to Refuse Treatment. We also have an Advance Decision to Refuse Treatment document that has been adapted from the National End of Life Care Programme. You can download the Advance Decision to Refuse Treatment document [PDF, 141kb]|.
Remember to review your Advance Decision regularly so you can be sure it’s up-to-date and reflects your current wishes.
An Advance Decision to Refuse Treatment may become invalid if you’ve created a Lasting Power of Attorney| after making an Advance Decision and given your attorney the authority to accept or refuse treatment on your behalf. You should let all the relevant people know if you’re in this position. It’s important to keep written records of when you made decisions and what they were. Make sure that everyone who may need to make decisions for you in the future knows where to find all your documents.
If you wish to refuse a treatment that is or may be life-sustaining you must state in the box: 'I am refusing this treatment even if my life is at risk as a result.'
- I refuse cardiopulmonary resuscitation if my hear and lungs stop functioning, even if my life is at risk as a result.
If I have terminal cancer and my heart and lungs stop functioning in a way that allows me to breathe spontaneously.
- I refuse artificial feeding or hydration even if my life is at risk as a result.
If I have terminal cancer, become unconscious - and am unable to swallow fluids or food unabled.
An Advance Decision refusing life-sustaining treatment must be signed by you (or by another person in your presence and by your direction) and witnessed by someone else.
You may hear doctors or nurses talk about a DNACPR request. These may also be referred to as DNARs. A DNACPR is a written statement to not give CPR (cardiopulmonary resuscitation) if someone has a cardiac arrest.
A cardiac arrest is when the heart stops beating. If the breathing stops, it is called a respiratory arrest. They commonly occur together, which is known as a cardiopulmonary arrest. Cardiopulmonary resuscitation (CPR) is a way of trying to restart the heart and breathing when they have stopped.
You may have already made a decision about not wanting to be resuscitated in a specific situation and included this in your Advance Decision to Refuse Treatment. However, if you haven’t made a decision about CPR and you want to, you should discuss this with your medical team, or specialist nurse. You may also want to talk this through with your family, a close friend or a spiritual carer such as a chaplain. Your medical team will be able to tell you how successful CPR is likely to be in different situations. They will take into account any other health problems you have.
You can also read our information about cardiopulmonary resuscitation for people with cancer|.
A senior healthcare professional may occasionally ask if you want CPR to be attempted if you were to have a cardiac arrest. This may happen if the doctor believes that you might arrest and resuscitation could be successful. For example, you may have an incurable cancer but be expected to live with the condition for a long time, sometimes even years. In this situation, the doctor will make sure that you have all the information you need to make an informed decision. They will let you know the likely outcome of CPR, how this might extend your life and what your quality of life might be.
If, after discussion with your medical team, you make the decision not to have CPR attempted, this is written as a DNACPR or not for CPR (NFCPR) order. It will be made, written and signed by a senior doctor or senior nurse who has responsibility for your care, following consultation with you. They may be a hospital consultant, a palliative care doctor, a specialist or consultant nurse, or a GP. The decision will be clearly written in your medical and nursing notes.
If you’re at home, you’ll be asked to keep a written record of your DNACPR where it can easily be accessed. This is so emergency services, such as out-of-hours ambulance services and doctors, will know your wishes.
Any decision that you make about CPR won’t affect any other care or treatment that you receive. You’re also able to change your mind at any time about whether CPR should be attempted. If you do change your mind, it’s important to tell a member of your healthcare team and discuss it with them. They will discuss their views on your changed decision with you. If they agree with your changed decision about CPR, they will make sure this is recorded in your medical notes. Remember to also tell your family or carer as this will help to avoid any confusion.
Content last reviewed: 1 September 2012
Next planned review: 2014
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