Advance decisions and advance statements
Advance decisions and advance statements ensure that your wishes are taken into account in the future. This factsheet explains how advance decisions and advance statements work, and what they can and cannot do. It also provides practical advice and a form to help you to draft an advance decision.
There are a number of things that you can do to plan for your care in the future. These are often referred to collectively as 'advance care planning'. The purpose is to enable you to make choices and decisions about your future care, in case there is a time when you cannot make these decisions for yourself, for example in the later stages of dementia. This can ensure that you are not given treatment that you do not wish to receive, or that your family have power to act on your behalf if you wish them to.
Advance decisions and advance statements are just one aspect of planning ahead. For example, you can decide if you would like to choose someone to manage your finances on your behalf if you are unable to in the future, or make decisions relating to your health and welfare. For more information see factsheet 472, Lasting Power of Attorney.
Other things you may wish to think about are putting your finances in order and getting a will, or updating any previous will. This allows you to state who you want to inherit your estate. For more information, see factsheet 467, Financial and legal affairs.
The information in this factsheet is for people living in England and Wales, and is not intended for those living in Northern Ireland, where the laws governing advance decisions do not apply. For information about the laws that relate to Northern Ireland, see factsheet NI467, Financial and legal tips.
What is an advance decision?
An advance decision gives you the opportunity to make decisions now about specific treatments that you may not want to receive in the future. The purpose is to ensure that, if you are not able to make decisions about treatment or consent yourself in the future, you are not forced to receive treatment that you would not want.
Treatment that can be refused includes life-sustaining treatment. For example, some people may write an advance decision to refuse a blood transfusion for religious or spiritual reasons, even if this will hasten their own death.
Advance decisions are legally binding as long as they fulfil certain requirements, and this means that they must be followed by doctors and other medical professionals. This factsheet details these requirements so that you can ensure that any advance decision you make will be valid.
What is an advance statement?
Advance statements are similar to advance decisions, but they are not the same thing. It is important to note that you can make both an advance statement and an advance decision.
An advance statement can be made verbally, or you can choose to write it down, which can be better because it is a permanent record. An advance statement gives you the chance to make more general statements about your wishes and views for the future, whereas an advance decision is about refusing certain treatments. Often an advance statement is referred to as a 'statement of wishes and care preferences'.
You could use an advance statement to express your wishes on future care options, such as where you wish to live, or the type of care and support you wish to receive.
An advance statement can also be used to express other wishes and preferences not directly related to care. Examples include stating food preferences, such as being vegetarian or not eating seafood, or your preference for having a bath over a shower. If you have particular religious or spiritual views, an advance statement provides an opportunity to ensure that any relevant values that you hold are taken into account by the people who make decisions for you.
You could also include a list of people, such as your partner, family or friends, who you wish to be consulted by health and social care professionals who are making decisions about your care.
Advance statements are not legally binding.
Why should I consider making an advance decision or advance statement?
There are a number of reasons why you may wish to make an advance decision or advance statement:
- It can be reassuring to know that, if you are unable to make a decision about your care in the future, you will not be given treatment that you do not want.
- They are a way of ensuring that your views and wishes are taken into account in the future.
- Creating an advance decision and/or advance statement can help to start conversations with doctors and nurses that you may not otherwise start.
- They can also help to prompt discussions with your family about your wishes, and making an advance decision and/or statement can take the burden away from your family, who otherwise may be asked to make these decisions for you.
Will my doctor have to follow my advance statement?
An advance statement - unlike an advance decision - is not legally binding, so doctors and medical professionals do not have to follow it. However, it should still be taken into account by health and social care professionals when making decisions about care and treatment.
Will my doctor have to follow my advance decision?
All medical professionals, including doctors, will have to follow your advance decision. However, this is only when your advance decision is 'valid' and also 'applicable'.
- Valid - In order to be valid, an advance decision must have been made at a time when you were able to make this decision. This is referred to as having mental capacity. For more information see factsheet 460, Mental Capacity Act 2005.
- Applicable - In order for the advance decision to be applicable, the wording has to be specific and relevant to the medical circumstances. If the wording is vague or there is a concern that it does not refer to medical conditions and/or practices that you are actually experiencing, then the advance decision may not influence the doctors' decisions at all.
The advance decision must also:
- be clear and unambiguous
- have been made when you were over the age of 18, and fully informed about the consequences of refusal of treatment, including the fact that it may hasten death
- not have been made under the influence of other people
- be written down and be signed and witnessed if it relates to refusing lifesaving treatment.
What an advance decision cannot do
An advance decision cannot be used to:
- refuse treatment at a time when you still have capacity to give or refuse consent
- refuse basic care essential to keep you comfortable, such as washing or bathing
- refuse the offer of food or drink by mouth (but it can be used to refuse feeding by tube, for example)
- refuse the use of measures solely designed to maintain comfort - for example, painkillers (which relieve pain but do not treat the condition)
- demand specific treatment
- refuse treatment for a mental disorder in the event that you are detained under the Mental Health Act 1983
- ask for anything that is against the law, such as euthanasia or assisting you in taking your own life.
How to make an advance decision
The content of an advance decision can be as simple or as complex as you wish. It is up to you to decide how detailed you wish your decision to be. You can draft an advance decision yourself using your own words, or you can use the form linked from the end of this factsheet. If the form does not cover everything you want to say, you can use it as a guide and delete or add extra wording to ensure it includes all and only your views and wishes.
Unless it relates to life-sustaining treatment, an advance decision can be made verbally. There is no set format for making a verbal advance decision, as it would depend entirely on the circumstances, but there are a few things that you can do to ensure that it is still valid. Ideally, a verbal advance decision would still be recorded in your medical records by a medical professional as this can help avoid confusion later. The record should include:
- a clear note of the treatment(s) to be refused if you know that you will later lack capacity to make the decision yourself
- details about the witness to your decision
- whether the health professional heard your decision themselves.
However, it is advisable to make your advance decision in writing to ensure that the medical professionals are aware of your wishes and that they are understood correctly.
Talk to your GP
As an advance decision concerns healthcare, it is strongly recommended that you discuss it with your GP before drafting it. As well as providing information on how your illness is likely to affect you as it progresses, your GP can help you understand the advantages and disadvantages of choosing or refusing medical procedures in advance. They can advise on some of the problems that may arise from an unclear statement, and will also be able to confirm that you had sufficient mental capacity at the time that you drafted your advance decision.
Consider talking to a solicitor
You may also choose to talk to a solicitor. You do not need to consult a solicitor to draw up an advance decision, but if you are uncertain, a suitably qualified solicitor can help you to ensure that your views are clearly expressed. However, do be aware that a solicitor cannot necessarily advise you on how your illness will progress and the medical interventions that may be available.
Important information to include
If you choose to draft your own advance decision, this is the minimum information you must include:
- your full name
- your address
- your date of birth
- any distinguishing features (eg tattoos, birthmarks)
- the name, address and telephone number of your GP
- the date
- your signature
- the dated signature of at least one witness over the age of 18 - ideally not a partner, spouse, relative, anyone who stands to benefit under your will, or your attorney under a Lasting Power of Attorney
- the name, address and phone number of whoever you have nominated to be consulted about treatment decisions (eg your attorney under a Lasting Power of Attorney for health and welfare), if you have done so
- where relevant, the date that you reviewed - and, if necessary, revised - your advance decision, accompanied by your signature
- if the advance decision is applicable to life-sustaining treatment, a clear, specific written statement that the advance decision applies to the specific treatment even if life is at risk.
The following are not strictly required, but it is strongly recommended that you include them as well:
- There should be a statement to identify the circumstances under which the advance decision would come into effect. For example, it may specify that it would come into effect only in the case of terminal illness, and where you are unable to make a decision for yourself.
- You should state any specific treatments that you wish to refuse, such as cardiopulmonary resuscitation (CPR) or artificial feeding and hydration. For more information on medical terms that you could include, and what they mean, you may wish to speak to your GP.
- It is advisable to include a statement in your advance decision to say that it was drawn up without influence or pressure from other people.
Make copies of your advance decision
As well as keeping a copy of the document for yourself, you should make several copies of your advance decision and give it to the following people:
- your GP, to keep with your medical records
- your hospital team, to place in your case notes
- a close relative or friend
- your attorney under a Lasting Power of Attorney for health and welfare (if you have one).
Review your advance decision regularly
You are advised to review and, if you so wish, revise your advance decision or advance statement regularly. If you want to make changes, you can either start afresh and complete a new form or amend your existing document, making sure you sign and date it again to confirm the changes. Whether the original form is revised or a new form completed, you must ensure an independent witness also signs and dates the new version. Make sure you give copies of the revised version to all the holders of the original version.
You can find a form to help you draft an advance decision linked from the end of this factsheet.
Frequently asked questions
How long is my advance decision valid for, and do I have to renew it?
Your advance decision will be valid from the date you sign it. It is advisable to review and, if necessary, revise it to ensure that it continues to reflect your views. However, your advance decision will continue to be valid even if you don't review it. If you do revise your advance decision, remember to sign and date it with the current date and get it witnessed again. Make sure you know who has copies of your advance decision so that you can give them the revised version.
Do I have to give my advance decision form to my solicitor?
No. An advance decision is entirely separate from other legal documents such as your will. However, you may want your solicitor to hold it for safekeeping.
Does my GP have to sign the advance decision form?
No, this is not necessary, but it is useful. If you discuss your advance decision with your GP and ask them to sign it, they will understand your wishes better, and can also be called upon if necessary to confirm that you had capacity at the time you made the decision. It is also important to make sure that a copy of your advance decision is placed with your medical records and to ensure that the relevant people know that it is there.
Can my family overturn an advance decision?
No. An advance decision is a statement of your wishes, and cannot be overturned by anyone, unless:
- you have signed a personal welfare Lasting Power of Attorney after the advance decision, and have given authority to the attorney to accept or refuse treatment to which the advance decision relates
- you decide for yourself not to follow the advance decision at a time when you have the required mental capacity
- you made your advance decision at a time when you did not have the required mental capacity
- you were unduly influenced by others to make the advance decision.
I have already written a living will. Is this still valid under the new act?
Living wills written before the Mental Capacity Act 2005 came into force in 2007 may continue to be valid, provided they meet the new rules. If your living will includes a refusal of life-sustaining treatment, it needs to be in writing and to contain the important information described above.
For details of Alzheimer's Society services in your area, visit alzheimers.org.uk/localinfo
For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets
To download a form to help you draft an advance decision, visit alzheimers.org.uk/advancedecisionform
Other useful organisations
Office of the Public Guardian (OPG)
PO Box 16185
Birmingham B2 2WH
The OPG supports and promotes decision-making for those who lack capacity or would like to plan for their future, within the framework of the Mental Capacity Act 2005. It provides free booklets on Enduring and Lasting Powers of Attorney and Deputyship.
Last reviewed: January 2013
Last updated: November 2014
Next review due: January 2016
Reviewed by: Natalie Melling, Approved Mental Health Professional (Mental Health Act), Independent Social Worker, Best Interests Assessor (Mental Capacity Act); Irene Chenery, Partner, Chenery Maher Solicitors, member of Solicitors for the Elderly
This factsheet has also been reviewed by people affected by dementia.
A list of sources is available on request.
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If you have any questions about the information on this factsheet, or require further information, please contact the Alzheimer’s Society helpline.
0300 222 11 22
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