This is a PatientPlus article.

PatientPlus articles are written for doctors and so the language can be
technical, however some people find that they add depth to the patient information leaflets. You
may find the abbreviations record helpful.

Advance Directives (Living Wills)

Background
A will is a statement by an individual giving their directives on how, typically, property and money
should be dealt with after death. Other matters such as funeral and burial arrangements may be
incorporated.

Whereas ordinary wills have been used for centuries the concept of an 'advanced directives' is
relatively new. Concerns about mental capacity and consent for treatment have become more of an
issue with medical advancement and interventions such as cardiopulmonary resuscitation, artificial
ventilation and intravenous hydration and nutrition. Some people become concerned about having
treatment when incapable of refusing treatments or when they are unable to consent or incapable
of consenting. A person may make a will or advance directive to the effect that if such
circumstances should they would not wish to be subjected to futile medical intervention.

Problems can arise with the practical definition, application and implementation of such directives.
Often the request for such a directive to be put in place can provide a useful opportunity to discuss
current or future illness with the patient and their families. An empathic approach to the request
and a discussion about implementation of such directives can help allay fear and anxiety. It may be
important to explore the reasons behind such fear and anxiety.

The underlying concerns

When giving consent for treatment we do so generally after considering information about the
treatment and when able to understand and make decisions about such treatment. Difficulties can
arise when patients are unable to make decisions or give consent. Patients may have concerns, for
example, about:

• Specific illnesses or circumstances where capacity to consent may be impaired. For

example severe brain damage, perhaps from stroke, head injury or dementia.
• Specific procedures which they do not want. For example blood transfusion for a
Jehovah's Witness.
• Maintaining quality of life.
• Wanting to die with dignity and avoid futile medical intervention.
• Concerns about autonomy and human rights often perhaps in the face of medical
paternalism.

There may still be issues of "best interest" and clinical judgement.1

The law
Not all law results from Act of Parliament. Common Law represents custom and practice over many
years. For example, Parliament has never passed a law to state that murder is illegal. It always has
been so, and absence of parliamentary legislation is no defense. Sometimes the interpretation of
either Common Law or Act of Parliament is unclear and a ruling may be made according to Case
Law.

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Much of the law relating to advance directives is common law based on such issues as the validity of
wills and consent. Some comes from Human Rights legislation, much of which originates from the
EEC but is ratified by the British Parliament. Some clarification is found in the Mental Capacity
Act.2

Limitations of advanced directives

There is some difference of opinion as to the legal status of advance directives but the majority of
opinion is that such wills are binding under Common Law and now enforced by Act of Parliament in
the Mental Capacity Act. They are not as entrenched in custom and practice as ordinary wills but
with such a directive in place there is a pressure on the doctor, within the law, to comply with the
directive.1

An advanced directive may allow an individual to specify in advance, that under certain
circumstances he would withdraw consent for life supporting interventions.

A person is not permitted to state that under these circumstances he would wish to receive a lethal
injection to permit him to die in peace. This is euthanasia which is still murder and a request for an
illegal intervention is not valid. Whilst philosophers may argue about the ethical difference between
the withdrawal of life support and active intervention to end life, the law is clear that the former is
permissible where the prognosis is hopeless, but the latter is not.

Usually, advanced directives are seen as requesting the withdrawal of life support or the refusal of
artificial nutrition or antibiotics when the case looks hopeless. A person has the right to refuse
treatment but not the right to demand treatment that is deemed inappropriate.3 The case law that
is usually quoted is that of Burke. He was a patient with spinocerebellar ataxia, a condition that
would progress to complete physical incompetence, including loss of the ability to communicate
whilst higher faculties would be maintained. His counsel argued in court that the current GMC
guidance that allowed withdrawal of life support in such cases was contrary to his human rights and
the judge ruled in his favour. However the GMC overturned the case at appeal.

A directive may be invalid:

• If not signed
• If there is reason to doubt authenticity (for example if 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 advanced directive

For a directive to be enforced, it is first necessary that the clinical team are aware that such a
provision exists. In the USA there is a registry of such directives4 and it could become part of the
Connecting for Health database so that it would be readily available to clinicians. A person close to
the individual may hold the statement. It is useful if its presence is recorded in medical records,
along with where it is lodged.

Just as a will has an executor, so a directive may have a healthcare proxy. This person may also

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have lasting power of attorney.5 Such a provision is common when a person is no longer competent
to manage his own financial affairs. The role of the proxy is to see that the wishes of the individual
are carried out. He does not have the power to make decisions. The wishes of the patient may not
be over-ruled 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 to discuss it with family. The following check
list may help.

Matters to consider when planning an advance directive

Opinion about the Would prefer to Would probably Uncertain either Would probably Eager to stay
following situations die prefer to die way prefer to live 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

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After detailed consideration of the implications a directive may be drawn up as for example those
outlined below:

I, (name) of (address) wish the following to be considered in the event of my incapacity to give or withhold consent for medical
intervention.

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, before I die, any of my organs should 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, 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.
Anyone who cares greatly about the issues involved may wish to consider such a will.

If, as a doctor or healthcare professional, you are approached by someone who is considering such a
will there are several points to make:

• Think very carefully about the content of such a will 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 over-ruled 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 a will 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.

Document references

1. Samanta A, Samanta J; Advance directives, best interests and clinical judgement:

shifting sands at the end of life. Clin Med. 2006 May-Jun;6(3):274-8. [abstract]
2. OPSI; Explanatory notes to the Mental Capacity Act. 2005.
3. Mohindra R; Obligations to treat, personal autonomy, and artificial nutrition and
hydration. Clin Med. 2006 May-Jun;6(3):271-3. [abstract]
4. US registry of advanced directives - uslivingwillregistry.com
5. Shickle D; The Mental Capacity Act 2005. Clin Med. 2006 Mar-Apr;6(2):169-73.
[abstract]

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Internet and further reading

• Age Concern; Fact sheet on advance directives. Well recommended.

• Department of Constitutional Affairs; website on mental capacity, covers several
topics

Acknowledgements EMIS is grateful to Dr Richard Draper for writing this article. The final
copy has passed scrutiny by the independent Mentor GP reviewing team. ©EMIS 2008.
DocID: 1668
Document Version: 22
DocRef: bgp25325
Last Updated: 1 Oct 2008
Review Date: 1 Oct 2010