Explanatory information and form
This factsheet explains what an advance decision is, and what it can and cannot do.
People who have dementia, or who are worried that they may develop it in future, are often concerned about how decisions about their medical treatment would be made if they lost the ability to decide for themselves. They may fear that they would be forced to receive life-sustaining or life-prolonging treatments long after they were able to achieve an acceptable or tolerable level of recovery, length of life or quality of life.
The Mental Capacity Act 2005 gives people in England and Wales a statutory right to refuse treatment, through an 'advance decision'. An advance decision allows a person to state what forms of treatment they would or would not like should they become unable to decide for themselves in the future.
You can download a PDF form to help you draft an advance decision from alzheimers.org.uk/advancedecisionform
Definitions of terms
An advance decision is intended to be a binding refusal of certain kinds of treatment as specified by the person making the advance decision.
An advance statement is a statement of general beliefs and aspects of life that a person values. It may reflect individual aspirations and preferences, and is sometimes called a 'personal values history'. The statement can be used to help health professionals and others, such as family members, to decide what sort of treatment the person would want if they were unable to communicate their wishes. However, an advance statement would not bind healthcare professionals to a particular course of action if it conflicted with their professional judgement.
An analgesic is a remedy that relieves or allays pain.
Capacity or competence is defined as the ability to understand the implications of a decision. A person is deemed to have capacity or competence if he or she:
- can understand and retain information relevant to the decision in question (the definition of 'to retain information' has to be assessed on an individual basis)
- can reflect on that information to arrive at a choice and use that information as part of the decision-making process
- can then express or otherwise communicate that choice.
A person diagnosed with dementia does not necessarily lack capacity. However, for people with dementia the loss of the ability to make informed decisions may be a gradual process, so the point at which they are no longer able to make a decision is quite difficult to pinpoint. Also, at some times a person may be quite capable of making their own decisions while at others their dementia can significantly affect their capacity and abilities. If a person's capacity fluctuates or is temporary, an assessment of the person's capacity must be made at the time the decision has to be made.
Cardiopulmonary resuscitation is a method of artificially restarting a person's heart.
A health and welfare attorney appointed under a Lasting Power of Attorney is an individual nominated and registered to make decisions on behalf of another person should that person lose capacity (see Factsheet 472, Enduring Power of Attorney and Lasting Powers of Attorney).
What are the advantages of deciding in advance?
Creating an advance decision and/or advance statement can bring some reassurance to a person worried about their future healthcare. When healthcare professionals are faced with difficult decisions about what treatment or care to give, an advance decision or advance statement will provide the best possible guide, and will help to ensure that the person's wishes are taken into account.
Preparing an advance decision or advance statement can open up a dialogue with doctors and nurses that might otherwise be delayed until it is too late. The process can also stimulate conversation with family and close friends, relieving them of some of the burden of decision-making at what can be a distressing time.
Alzheimer's Society supports the idea of advance decisions, because they enable people with dementia to have a say in their future care. The British Medical Association supports the principle of advance decisions, and recognises that healthcare professionals may be legally liable if they disregard the contents of a valid advance decision.
Are advance decisions legally enforceable?
As long as an advance decision is valid and applicable, it is legally enforceable in England and Wales:
- Valid − The person who drew up the advance decision must have had mental capacity to do so at the time.
- Applicable − The wording of the advance decision has to be relevant to the medical circumstances. If the wording is vague or there is a concern that the person was not referring to medical conditions and/or practices that they 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 the person was over the age of 18 years, had sufficient mental capacity and been fully informed about the consequences of refusal of treatment, including the fact that it may hasten death
- have been intended to apply in the situation which has arisen
- not have been drawn up under the influence of other people.
If a health and welfare attorney has been appointed under a Lasting Power of Attorney, the health and welfare attorney should also be involved in discussions about the person's treatment, and healthcare professionals should take information provided by him or her into account. An advance decision overrides a Lasting Power of Attorney, unless a Lasting Power of Attorney prepared after the advance decision specifically confers authority on the attorney (See again Factsheet 472, Enduring Power of Attorney and Lasting Powers of Attorney).
What an advance decision cannot do
An advance decision cannot be used to:
- refuse treatment if the person has capacity to give or refuse consent to it
- refuse basic nursing care essential to keep a person comfortable, such as washing, bathing and mouth care
- refuse the offer of food or drink by mouth
- refuse the use of measures solely designed to maintain comfort − for example, painkillers
- demand treatment that a healthcare team considers inappropriate
- refuse treatment for mental disorder if the person is or is liable to be detained under the Mental Health Act 1983
- ask for anything that is against the law such as euthanasia or assisting someone in taking their own life.
How to draw up 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 statement to be. You can draft an advance decision yourself using your own words, or you can use the form at the end of this sheet. If the form does not cover everything you want to say, you can use it as a guide and add extra wording to ensure it includes all your views and wishes. Unless it relates to life sustaining treatment, an advance decision can be made verbally. 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
Because an advance decision concerns healthcare, we strongly recommend 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. He or she 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 end-of-life care 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
- the name, address and telephone number of your GP
- whether you sought advice from a healthcare professional
- the date
- your signature
- the dated signature of at least one witness over the age of 18. It is recommended that your witness should not be a partner, spouse, relative, anyone who stands to benefit under your will, or your attorney under a Lasting Power of Attorney
- a clear statement of your wishes and values
- the name, address and phone number of whoever you have nominated to be consulted about treatment decisions (your health and welfare 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, you must include a statement to verify that the decision applies to that treatment even if it might put your life at risk.
You should include 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 or artificial feeding and hydration.
It is advisable for the advance decision to include a statement to acknowledge 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 health and welfare attorney under a Lasting Power of Attorney (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 − perhaps every six months. 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 the form again to confirm the changes. Whether the original form is revised or a new form completed you must ensure an independent witness also signs the new version. Make sure you give copies of the revised version to all the holders of the original version.
You can download a pdf form to help you draft an advance decision from alzheimers.org.uk/advancedecisionform
Frequently asked questions
Is my advance decision legally enforceable?
Yes. It is valid in England and Wales as long as it was drawn up when you were over 18 and had the required mental capacity, as long as it is clear, is relevant to the medical circumstances that arise and at the time you do not have capacity to consent or refuse the treatment.
Is there equivalent legislation for people in Northern Ireland?
The Mental Capacity Act 2005 does not apply to people living in Northern Ireland. There is currently no legislation in Northern Ireland covering the use of advance decisions. See 'Useful organisations', below, for organisations that can advise further.
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 every six months to ensure that it continues to reflect your views. However, failure to do this will not invalidate it. If you do revise your advance decision, remember to sign and date it with the current date. 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?
This is not necessary, but it is useful. If you discuss your advance decision with your GP and ask him or her to sign it, he or she will better understand your wishes, and can also be called upon if necessary to confirm that you had capacity at the time you made these decisions. 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 lasting power of attorney to appoint a health and welfare attorney after the advance decision, and have given authority to the attorney to accept or refuse treatment to which the advance decision relates
- you revoke the advance decision yourself 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.
The UK's leading care and research charity for people with dementia and those who care for them.
Office of the Public Guardian (OPG)
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 Power of Attorney and receivership.
Last updated: August 2011
Last reviewed: July 2010
Next review due: July 2012
Reviewed by Luke Warren, Information Officer (Legal and Welfare Rights), Alzheimer's Society and Lynn Aglionby, Solicitor, Trowers & Hamlins LLP
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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