PatientPlus articles are written by UK doctors and are based on research evidence, UK and European Guidelines. They are designed for health professionals to use, so you may find the language more technical than the condition leaflets.
The term advance directive (increasingly being replaced by the term advance decision) means a statement explaining what medical treatment the individual would not want in the future, should that individual 'lack capacity' as defined by the Mental Capacity Act 2005. The term 'living will', whilst helping people to understand the concept, is somewhat misleading in that, unlike a will, it does not deal with money or property. Moreover, it can relate to all future treatment, not just that which may be immediately life-saving. An advance directive is legally binding in England and Wales. Except in the case where the individual decides to refuse life-saving treatment, it does not have to be written down, although most are and a written document is less likely to be challenged.
Whilst the patient has capacity their word overrides anything contained in their advance directive or anything their legal representative may say.
If doctors have doubts about the validity of an advance decision they should consult early with their indemnity organisation and they may be able to apply to the Court of Protection to overrule it.
In Scotland and Northern Ireland the situation is somewhat different. Advance decisions are governed by common law rather than legislation. However, providing the decision was made by an adult with capacity and clearly sets out the person's intentions, it is highly likely that a court would consider it legally binding.
The term advance statement is sometimes used. This is an expression of the individual's desires and may refer to personal values, principles and religious beliefs. It is not legally binding but may act as a guide to a doctor who has to make a decision on behalf of a patient who lacks capacity.
The advantages of an advance directive
An advance directive enables an individual to think about what they would like to happen to them in the event that they lose the capacity to take informed decisions about their care. Examples of such decisions include:
- The use of intravenous fluids and parenteral nutrition.
- The use of cardiopulmonary resuscitation.
- The use of life-saving treatment (whether existing or yet to be developed) in specific illnesses where capacity or consent may be impaired - for example, brain damage, perhaps from stroke, head injury or dementia.
- Specific procedures such as blood transfusion for a Jehovah's Witness.
Even if a directive is not eventually issued, the topic may motivate the individual to discuss future arrangements with their doctor, family and friends.
An advance directive is legally binding in the sense that a doctor, who gave a patient life-saving treatment against their wishes expressed in a directive, faces legal action. However, as the use of advance directives becomes more commonplace, controversies are bound to arise (eg the rights of pregnant terminally ill women) and the legal issues continue to be the subject of debate.
Limitations of an advance directive
An advance directive cannot be used to:
- Ask for specific medical treatment.
- Request something that is illegal (eg assisted suicide).
- Choose someone to make decisions for you, unless that person is given 'lasting power of attorney'.
- Refuse treatment for a mental health condition (doctors are empowered to treat such conditions under Part 4 of the Mental Health Act).
A doctor may decide not follow an advance directive if:
- The individual makes changes which invalidate the directive (eg a change to a religion which prohibits the refusal of treatment).
- There have been advances in treatment which may have affected the initial treatment (unless the individual specified in the directive that such advances would be declined).
- There is ambiguity in the wording of the directive (eg the wording is not relevant to the current medical condition).
A directive may be invalid:
- If it is not signed.
- If there is reason to doubt authenticity (for example, if it was not witnessed).
- If it is felt that there was duress.
- if there is doubt as to the person's state of mind (at the time of signing).
Management of an advance directive
For a directive to be enforced, it is first necessary that the clinical team be aware that such a provision exists. It could be recorded in the individual's computerised or manual notes and a form for the purpose is available from the National End of Life Care Programme website.
Just as a will has an executor, so a directive may have a healthcare proxy. This person may also have 'lasting power of attorney'. Such a provision is common when a person is no longer competent to manage his or her own financial affairs. The role of the proxy is to see that the wishes of the individual are carried out. He or she does not have the power to make decisions. The wishes of the patient may not be overruled by relatives.
An advance directive does not have to be drawn up by a solicitor but neither does a will. However, in both cases, the involvement of such a professional should substantially reduce the chance of an oversight that would result in failure of the will to be observed. A will usually has to be signed by the author and co-signed by two independent witnesses who are not beneficiaries of the will. It is sometimes said that only one witness is required for an advance directive but to replicate a will, two may be safer and they should be people who do not stand to benefit from the estate.
An advance directive can be rescinded or updated at any time but, at the time that it is implemented, the individual is in no position to offer an opinion. If the contents are changed, all old wills should be destroyed.
Drawing up a directive
Before such a document is produced, it is important for the individual to discuss it with their family. The following checklist may help:
|Matters to consider when planning an advance directive|
|Opinion about the following situations||Would prefer to die||Would probably prefer to die||Uncertain either way||Would probably prefer to live||Eager to stay alive|
|Permanently paralysed but able to relate to others.|
|Totally dependent on others. Needs to be fed.|
|Aware but unable to communicate.|
|Confused and very poor memory.|
|Constant uncontrolled pain.|
|Brain damage. In coma. If regained consciousness, markedly impaired.|
|Terminal illness, not necessariy cancer.|
After detailed consideration of the implications, a directive may be drawn up as, for example, those outlined below:
If ever I am unable to communicate and have an irreversible condition and I am expected to die in a matter of days or weeks, or if I am in a coma and not expected to regain consciousness or if I have brain damage of disease that makes me unlikely ever to recognise or relate to people then I want treatment only to provide comfort and relieve distress, even if this may shorten my life. I do not want treatment that can only prolong dying.
I consent to any acts or omissions undertaken in accordance with my wishes and I am grateful to those who respect my free choice. I reserve the right to revoke or vary these conditions but otherwise they remain in force.
If I am certified brain dead, should any of my organs be of value to others, I give consent to their removal for the purpose of transplantation.
State where copies may be lodged. The person must sign and date the document.
Beneath this may be two signatories, also with dates below a statement to the effect that the above signed in their presence and was, to the best of their knowledge under no duress and of sound mind. They also believe that they will not benefit from the estate.
Who should make an advance directive?
An advance directive can be made by anyone who is over 18 years old (16 in Scotland), is of sound mind and cares about the issues involved. Some people may be especially likely to choose the option, including those with incurable cancer, those with a progressive neurological disease and those with mild memory loss, as they are still of reasonably sound mind but at risk of progressing to dementia.
If, as a doctor or healthcare professional, you are approached by someone who is considering an advance directive there are several points to make:
- Think very carefully about the content of such a directive before committing yourself.
- Discuss it with those close to you and try to cover all eventualities.
- It is a valid legal document that cannot be overruled by family.
- It is not possible to request illegal action such as euthanasia.
- It is not possible to request interventions that the medical team regard as excessive and inappropriate.
- It can be changed or revoked at any time if you are competent to do so.
- It must be signed, dated and witnessed.
- It is not essential to make it via a solicitor but there may be some safeguards in doing so.
- Doctors and family should know that such an advance decision exists and where it is lodged.
- Make sure that you also have an up-to-date ordinary will. About a third of people die intestate.
Further reading & references
- Your right to refuse future medical treatment, Directgov, 2010
- Advance Directives, Medical Protection Society (2011)
- Lemmens C; End of life decisions and pregnant women: do pregnant women have the right to Eur J Health Law. 2010 Dec;17(5):485-505.
- Shaw D; A DIRECT ADVANCE ON ADVANCE DIRECTIVES. Bioethics. 2010 Dec 7. doi: 10.1111/j.1467-8519.2010.01853.x.
- Muzaffar S; 'To treat or not to treat'. Kerrie Wooltorton, lessons to learn. Emerg Med J. 2010 Oct 5.
- Advance decisions to refuse treatment: a guide for health and social care professionals, NHS End of Life Care Programme and the National Council for Palliative Care (2008)
- Shickle D; The Mental Capacity Act 2005. Clin Med. 2006 Mar-Apr;6(2):169-73.
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. EMIS has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.
Dr Richard Draper
Dr Laurence Knott
Dr Paul Scott