Living Wills

Nadja Tollemache OBE
Issue 8, November 2002

Over the last few decades there has been increasing emphasis on self-determination (also labelled individual autonomy) in regard to a person's right to choose their medical treatment.

However, some difficult problems arise in cases where rational, legally competent individuals want to make provision for what is to happen in case they should ever become incapable at a later date through unconsciousness, coma, or mental incapacity. The question is whether such a provision made now is binding at a later date on health professionals, caregivers or members of the family. Such a declaration of wishes for the future is known as an "advance directive" and may be either in the form of a "Living Will" or in the form of an enduring power of attorney for personal care.

Information on living wills in New Zealand is not easy to track down, whereas there is a mass of information as to the law and practice in the USA. It is proposed to give a short background on the American situation, which has caused the Catholic Church in the USA to clarify its position, and then to describe the law and practice in New Zealand.

The American background

A brief outline of the history of the developing use of living wills in the USA is provided by Friday (1996 p.245) who points out that they were "first formulated in 1967 by the Euthanasia Educational Society" and "perceived by many as a means of preparing society for eventual direct active euthanasia". As such, the living will was seen as unacceptable by many Catholics and other Christians, and it was argued that such a will was unnecessary because people already had the right to refuse useless treatment. On the other hand a number of Catholic theologians who have written about the "consistent ethic of life" have pointed out that medicine's use of technology has resulted in a situation where people are afraid not of death, but of the long-drawn-out process of dying. We are now able to maintain patients in a persistent vegetative state for years by using nasogastric tubes or gastrostomy tubes, but does that mean we ought to do so? It is because many people fear that this might happen to them that they want to give clear instructions that no extraordinary means should be used on them, and may specify ventilators/respirators or tube hydration/nutrition or other life support systems as being technology they do not want to be subjected to.

In Catholic circles in the USA there has been clarification of the position that, given the Church's traditional teaching about the right to refuse "extraordinary means" to prolong life, it is acceptable to use a living will. Indeed many religious communities in the USA are apparently encouraging their members to use them. (Friday, 1996, p.245)

The following format for a living will was suggested by the US Catholic Hospital Association in 1974:

"I request that, if possible, I be consulted concerning the medical procedures which might be used to prolong my life as death approaches. If I can no longer take part in decisions concerning my own future and there is no reasonable expectation of my recovery from physical or mental disability, I request that no extraordinary means be used to prolong my life."

The New Zealand position

The situation in New Zealand differs in one particularly important way from the American one: Accident Compensation legislation, as administered by the Accident Compensation Corporation (ACC), has virtually eliminated medical malpractice litigation. Litigation has been one of the drivers behind the increasing emphasis in the USA on patient self-determination and the legal recognition of advance directives as a mechanism by which health providers can avoid liability by carrying out the wishes of the patient. Canada and the United Kingdom have also developed this branch of the law through litigation. In New Zealand, development through judicial decisions was not available. The importance of self-determination and informed consent to treatment has been developed through the Cartwright Report recommendation which led to the setting up of the office of Health and Disability Commissioner, whose first task was to draft a Code of Patients Rights.

That Code is incorporated in law as a Regulation, which makes it subordinate to statute, but legally enforceable. However, the Code is framed in the form of patient's rights, and patients do not have to exercise those rights, or rather they have the freedom to exercise those rights in accordance with their own conscience.

The Code of Health and Disability Services Consumers' Rights (the Code) makes the following provision:

Right 7: Right to make an informed choice and give informed consent:

(5) Every consumer may use an advance directive in accordance with the common law.

Under point 4 Definitions the Code provides:

... Unless the context otherwise requires, "Advance directive" means a written or oral directive:

By which a consumer makes a choice about a possible future health care procedure; and
That is intended to be effective only when he or she is not competent.

"Choice" means a decision:

To receive services;
To refuse services;
To withdraw consent to services

The other relevant piece of legislation is the New Zealand Bill of Rights Act 1990 which states:

s11 Right to refuse to undergo medical treatment

Everyone has the right to refuse to undergo any medical treatment.

Against this legal background, two types of Advance Directives need to be considered: the Enduring Power of Attorney in relation to personal care and welfare and the "Living Will."

1. The Enduring Power of Attorney (EPOA)

A power of attorney is a legal way of giving another person the power to make a decision on ones behalf. More specifically, an enduring power of attorney does not come into force until the person giving the power becomes mentally incompetent, and then it continues in force (ie. "endures"). Under the Protection of Personal and Property Rights Act 1988 (PPPRA) a person can be appointed to take health care decisions on behalf of the person giving the power of attorney, for the time when that person is no longer competent.

There is still a degree of misunderstanding about the enduring power of attorney in that some relatives attempt to obtain it after the person has become incapacitated. It is absolutely essential that the EPOA must be given before a person becomes incapacitated, and is at least capable of understanding the nature and effect of the power: Re "Tony" (1990) 5 NZFLR 609; Re K (1988) 2WLR 781. Because of problems that had arisen, the Law Commission issued a report in 2001, Misuse of Enduring Powers of Attorney (No 71) in which it recommended that there should be a certificate from a registered medical practitioner regarding mental capacity, and that the donor should have received independent legal advice.

From the point of view of the person wishing to make it clear what treatment is wanted or not wanted in the future, the drawback of the EPOA is that under s18(c) of the PPPRA there are limits to what an attorney can do, even if the patient gave clear instructions while still competent. However, what is "standard" treatment is not clear, and evolves over time and may not be the same as "ordinary means" as understood in the Catholic tradition (McCabe, 2001). The EPOA does not give authority to unplug life support systems even if the patient had given clear instructions while still competent that he/she did not want to be on life support machinery.

2. The "Living Will"

Because of concern expressed by clients as to the above limitations to the powers of an attorney under the EPOA, the Public Trust has developed a form of "living will" adapted from an American document; it is personalised to meet an individual's requirements, including listing the circumstances which would bring the will into operation. The document is prepared in triplicate (one for the General Practitioner, one for the family and possibly one for the donor's lawyer) and signed by two witnesses who declare that they know of no pressure being brought on the person to make the directive and that they are not aware that they stand to gain by the person's death. It should be made clear, however, that these formalities while well thought out and sensible, are not a legal requirement. Other lawyers can also draw up "living wills" but none of these documents have been tested in New Zealand courts.

Validity of Advance Directives

Five issues arise if there is any question about the validity of an advance directive:

That competence must exist at the time the directive was made has already been mentioned above. It should, however, be noted that the Code under Right 7(2) states that: "Every consumer must be presumed competent to make an informed choice and give informed consent, unless there are reasonable grounds for believing that the consumer is not competent." If the consumer was not competent to make the directive, then it is not valid.
Whether the decision was made freely, that is, without undue influence from anyone, needs to be evidenced by the witnesses and/or the person who assisted in drawing up the directive.
Perhaps more difficult is the question of whether the person was sufficiently informed to make the decision, which would include an understanding of the medical treatment that is being asked for or refused. If the standard treatment for certain conditions covered by the directive changes over time, there may well be doubt as to whether the patient took into consideration these new treatments; it is therefore important that advance directives be regularly reviewed and updated if necessary. It is important that family and close friends be kept informed of the wishes of the person, so they can assist any caregiver who has doubts about the understanding or intentions expressed in the directive.
Whether the circumstances envisaged in the advance directive have arisen may present a problem. So, for example, if Joan's "living will" names Alzheimer's as a circumstance that will bring the will into effect, because of bad experience of what happened with her parent who had the condition, but Joan though now clearly incompetent seems to be happy and contented, a clear instruction that no antibiotics should be administered in case of pneumonia or other similar illness might be questioned as not being intended to relate to the circumstances that now exist.
The great difficulty may arise that the patient's right to refuse treatment under s11 New Zealand Bill of Rights Act 1990 and Right 7 (7) of the Code may be seen to clash with the health professional's duty to provide medical treatment that could cure, alleviate or prevent a deterioration in health, and also with the duty to provide "necessaries of life" under s151 of the Crimes Act. Take the instruction that no blood products should be administered under any circumstances. Many would see blood transfusion as "standard treatment"or "ordinary means". However there are patients with religious beliefs, such as Jehovah's Witnesses, for whom blood transfusion is unacceptable.The July 2002 Issue 4 of Blood Issues (the newsletter of the NZ Blood Service) states that "a properly executed living will should be honoured."

However a number of United Kingdom cases since the US Quinlan case 355 A 2d 647, particularly Airedale NHS Trust v Bland (1993) AC 789 have made it clear that a competent adult has the right to refuse treatment, even if the health professionals consider it to be "in the patient's best interests" and even if the result will be the patient's death. In Re B (Adult: Refusal of Medical Treatment) (2002) 2 All ER 449 a patient who was not dying from a terminal condition but was permanently on a ventilator, which she wished to have switched off, had her right to make that choice recognised. Imposing the treatment in the face of the patient's refusal would be a criminal assault and the patient in Re B was granted a small award of damages to emphasise the finding of unlawful trespass to her by the unwanted treatment.

Are advance directives binding on caregivers?

This question is slightly different from the question of validity. It takes the matter further by asking whether, if the advance directive met the above criteria for validity, the caregiver is bound by the directive. It would seem that failure to follow the directive by giving treatment that was clearly refused would be a breach of the code. However, s3 "Provider compliance" says that the provider who has taken reasonable actions in the circumstances to give effect to the rights is not in breach of the Code. A provider might well (and "reasonably") throw doubt on the applicability of the advance directive by questioning the medical information on which the patient based the directive. This factor makes it important for the "living will" to state quite unambiguously the reason for the choice made, so that it may be clear that new medical information would not have affected the decision. In the absence of judicial decisions on the effectiveness of living wills, it would be premature to state that a living will is binding. Nor are the UK cases mentioned above definitive, since they were concerned with patients who were competent, not with advance directives of patients who were incompetent at the time of treatment.

Whatever the legal position, there are still ethical dilemmas left for the health professionals involved or other carers and for the person considering making an advance directive. No doubt as medical technology develops, the Church teaching will take into account new circumstances. For the present, the statement in Evangelium Vitae No. 65 is relevant:

Euthanasia must be distinguished from the decision to forgo so-called 'aggressive medical treatment', in other words, medical procedures which no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and the patient's family...

It is also important to realise that a patient is entitled to choose to use extraordinary means even if they are experimental and risky and may "interrupt" those means where the results fall short of expectations". (Grimm, 2001 p.3) Grimm quotes the Ethical Directives and Religious Directives for Catholic Health Care, (National Conference of Catholic Bishops,1995) which state:

While every person is obliged to use ordinary means to preserve his or her health, no person should be obliged to submit to a health care procedure that the person has judged, with a free and informed conscience, not to provide a reasonable hope of benefit without imposing excessive risks and burdens on the patient or excessive expense to family or the community (no.32).

Finally, it is clear that it is both legal (see Re B) and ethical to provide effective pain relief as part of palliative care, even if the unwanted side effect of the medication is to hasten death. (See Manning op cit in acknowledegments especially fn 42.)

Acknowledgements:

For helpful discussions, generosity with materials and assistance with library sources, sincere thanks to Eugenie Laracy; Sylvia Bell from the Human Rights Commission; Janet Strong from the Public Trust; Ron Paterson, Health & Disability Commissioner; Joanna Manning, for allowing me to see the page proofs of her article "Autonomy and sthe Competent Patient's Right to refuse Life-prolonging Medical Treatment-Again" for the Journal of Law and Medicine, November 2002; Margaret Grigg, Librarian, Eugene O'Sullivan Theological Library at Newman Hall.

References:

Friday, R. (19--). New Catholic Encyclopedia (Vol. 19, p.245).

Grimm, J. (2001). Living Wills and Health Care Proxies. Ethics & Medics, 26(3), 3.

McCabe, M. (2001). Ordinary Means – Extraordinary Means: A Valid Distinction? The Nathaniel Report, (4), 5-6.

A list of further reading on this subject is available by contacting The Nathaniel Centre.

Nadja Tollemache OBE is a member of the Panel of Advisors of The Nathaniel Centre.