The Case for Advance Care Directives


Strap - There has been a good deal of publicity on the topic recently following publication of the Law Reform Commission’s September 2009 report on Bioethics: Advance Care Directives. Louise O’Rourke of Hayes Solicitors looks at where and how they apply to the current regime.

The Law Reform Commission’s (LRC) recent report on Advance Care Directives forms part of a push for wider reform of the law on mental capacity and follows an earlier report which prompted the Mental Capacity Bill 2008. The LRC has prepared a draft Bill on Advance Care Directives in the hope that it will be easily incorporated into the existing Mental Capacity Bill.

The current position is that there are two main legal mechanisms when dealing with persons lacking capacity - wardship and the Enduring Power of Attorney (EPA) – both of which provide for the appointment of substitute decision-makers.

Wardship is an unwieldy, expensive and unsatisfactory procedure in the High Court and in part the purpose of the Mental Capacity Bill is to create a new substitute decision-making process for protecting vulnerable adults, involving a new Court for Care and Protection and the appointment of a Personal Guardian. The Bill allows for the making of health care decisions but will not as drafted allow a power to a Personal Guardian to refuse life-sustaining treatment.

An EPA is designed to provide for the appointment of an individual as an attorney who can make certain decisions over property, financial and business affairs and personal care decision in the event of future loss of decision-making capacity. Under the current legislation those personal care decisions do not include healthcare decisions and the Mental Capacity Bill envisages extending that, specifically excluding decisions involving refusal to consent to artificial life-extending treatment, consent to organ donation or to non-therapeutic sterilisation.

People are increasingly enquiring about making Advance Care directives when they come into solicitor’s offices to prepare wills - often at the same time as execution of an EPA - due to a wider awareness about end of life care and planning for the unknown.

The essence of an advance care directive is that it is a document prepared by a person of full capacity intended to be activated in the event of future incapacity and leaving instructions as to how they are to be treated in certain defined situations. As there is no right to dictate treatment decisions, instructions tend to be expressed in terms of what treatment may not be given. Any such advance directive is overridden by a later competent contemporaneous decision. The term is generally associated with decisions concerning end of life care and particularly withdrawal of life-sustaining treatment, but applies equally to other situations eg) blood transfusions and organ donation. The LRC suggests that the maker should be able to appoint a “healthcare proxy” who will interpret, or in specific situations, state the maker’s instructions.

Advance care directives have had legal status for some time in other jurisdictions and the Council of Europe in June issued a draft statement which noted that in legal systems where such measures are available that people make increasing use of them and recommended that Member states should promote self determination for adults in the event of their future incapacity.

Despite that fact that doctors are increasingly coming across directives in practice and a number of institutions have published guidelines, it is surprising that there is no legal framework here to assist those making, drafting and interpreting them. The general view is that they will be upheld by the Courts and the fact that the maker had the foresight to document his or her wishes indicates that he or she held strong views which health professionals will strive to take into account.

Health professionals have a legal, as well as ethical, duty to protect life under Article 2 of the European Human Rights Convention. A failure to correctly interpret an advance directive could lead to a civil claim in negligence or for assault and battery. An example occurred in the UK where a patient recovered damages against her healthcare providers after a life-saving transfusion was performed despite that fact that she was carrying a “no blood” card.

The Bill drafted by the LRC makes no changes to existing civil and criminal law and so, for example, the maker of an advance care directive cannot validly direct euthanasia as a course of action. The Commission’s view is that the regulatory bodies are best placed to inquire into the conduct of a health care professional who fails to comply with an advance care directive. There is specific provision made for a “good faith defence” in later proceedings or enquiries. It recommends that a code of practice (to include specific guidance on DNR orders) be prepared under the auspices of a multi-disciplinary working group.

Two of the major issues touched on by the Commision are how to deal with later material advances in treatment and the approach to be followed if the directive appears invalid or has been revoked. The overriding principle recommended by the LRC is that in cases of doubt any such doubt must be interpreted in favour of preserving life.

An important point for healthcare professionals is that a person may not validly “opt out” of basic and palliative care but may validly refuse artificial life-sustaining treatment - only if the directive is in writing and ideally witnessed by at least one person. In other circumstances a directive may be unwritten.

So what should one do if faced with a written or verbal directive from a now incompetent patient? Taking direction from the draft Bill the factors that ought to be considered include:

• Satisfy yourself that there is no reason to believe that patient was incompetent when deciding, that he fully understood the consequences and that there is no question of undue influence.

• Assess whether the current situation matches that envisaged by the patient. For example a patient with a degenerative condition may have decided to refuse life sustaining treatment in event of later incapacity, but what if he is unconscious following a car crash at some remove before the condition causes incapacity?

• Consider is there is any evidence of a change of heart or doubt. The Bill renders a verbal revocation effective at any time but are there other indicators? If possible the GP/next of kin/close friend should be consulted.

• Consider whether between the making of the decision and its activation have there have been medical developments which might have swayed the maker? Outdated decisions can cause confusion and lead to unintentional results.

Advice should be sought from colleagues or if necessary the ethics committee, indemnity organisation or the institution’s legal advisers. The ultimate arbiter remains the High Court.

Facsimile of an article that appeared in the IHCA SCOPE magazine in November 2009