Advance Directives (Living Wills)

The concept of a will has been accepted in law for many centuries. A will is a statement by an individual, outlining how he wishes his property and money to be allocated after his death and possibly such other matters as funeral and burial arrangements.

A person who is beyond the age of consent and of sound mind is allowed to consent to medical treatment or to refuse it. We may feel that the refusal is totally illogical, as when a Jehovah's Witness refuses a life-saving blood transfusion, but they have the right to make that decision and the implementation of a section of the Mental Health Act to enforce treatment is not appropriate. The problem of consent or its refusal arises if the person is no longer in a position to give valid consent. This may arise because of severe brain damage, perhaps from a stroke or a head injury or there may be dementia. A person may make a will or advance directive to the effect that if such circumstances should arise that he would not wish medical interventions to keep him alive for a life of very dubious quality. Some people would call this dying with dignity.

Whereas ordinary wills have been used for centuries, as dying has always been inevitable, the concept of advanced directives is new. This is because the issue has arisen only with medical advancement and interventions such as cardiopulmonary resuscitation, artificial ventilation and intravenous hydration and nutrition. These may be started at an early stage when the prognosis is unclear but if it becomes apparent that there is no realistic chance of recovery, when should these expensive but futile interventions be withdrawn? In addition, there has been a marked change in attitude towards patient's autonomy in recent years. Human rights are also now enshrined in law and the concept of the benevolent, paternalistic doctor making all the decisions on behalf of the patient is largely a relic of the past. There may still be issues of "best interest" and clinical judgement.¹

Not all law results from Act of Parliament. Some is called Common Law and 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 and absence of parliamentary legislation is no defence. Sometimes the interpretation of either Common Law or Act of Parliament is unclear and a judge makes a ruling after a period of deliberation. This is called Case Law. It can be overturned at a later date, especially by a higher court and sometimes plaintiffs in important matters are encouraged to go to the Court of Appeal or even the House of Lords for a definitive ruling. Any such ruling may be quoted by a barrister in arguing his case, usually with such words as "their lordships, in their wisdom, ruled that..."

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 Act² that received Royal Assent in April 2005 but will not become law until 2007.

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 will remain so until April 2007 when they will be enforced by Act of Parliament in the Mental Capacity Act. They are not as entrenched in custom and practice as are standard wills but the presence of such a directive is a strong pressure on the doctor to comply.¹ The doctor may complain that the directive is contrary to his conscience and he cannot and must not do anything that is illegal.

An advanced directive may allow an individual to specify in advance, that under certain circumstances he would withdraw consent for life support interventions. It would be sensible to allow such interventions at an early stage when accurate diagnosis and prognosis are unclear but if it becomes obvious that there is no realistic chance of recovery to a reasonable quality of life, that he would withdraw consent for such interventions so as to allow him to die.

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. However, some people may wish all energy to be expended in every conceivable life support mechanism and under no circumstances may it be withdrawn until death has occurred. 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 here 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. The GMC took this to the court of appeal and won.

Had the GMC not won, we may have seen a significant number of intensive care beds being occupied by those whose prognosis was hopeless but they could spend weeks or months receiving ventilation and artificial nutrition and hydration. This would be extremely expensive and as the NHS has a finite budget, it would consume valuable resources that may otherwise be used for those with much greater chance of benefit.

A directive may be invalid if it is not signed, if there is reason to doubt authenticity such as not being witnessed, if it is felt that there was duress or if there is doubt as to the person's state of mind at the time.

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 give the matter considerable thought, preferably discussing it with loved ones. It is important to read around it and to be realistic about how one might feel if the situation were not hypothetical but for real. The following check list may help to indicate how an individual feels about possible outcomes.

After detailed consideration of the implications a directive may be drawn up along the following lines:

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. However, anyone may suffer a serious injury or have a sudden stroke and so it is impossible to predict who might need it. Anyone who cares greatly about the issues involved should make 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. Think the unthinkable.
• It is a valid legal document that cannot be over-ruled by family, provided that it is correctly, legally made.
• 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. They often think that their wishes are known or the outcome is clear. Often it is not and even if it is, probate is much easier and swifter if a valid will has been made.