Advance Directives (Living Wills)

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.

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

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.

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

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)

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 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.

Before such a document is produced, it is important to discuss it with family. The following check list may help.

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

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.