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Advance Directives, Living Wills and Questions of Competence

Presentation to the NZ Hospitals Association Conference ' Chance or Choice - Staying Motivated in Aged Care'

7 March 1997

1. What is an advance directive or living will?

Right 7(5) of the Code of Health and Disability Services Consumers' Rights states that: "Every consumer may use an advance directive in accordance with the common law".

"Advance directive" is defined in the Code as meaning "a written or oral directive - (a) By which a consumer makes a choice about a possible future health care procedure; and (b) That is intended to be effective only when he or she is not competent". (The term "living will" is used by people as an alternative to "advance directive") Some advance directives fitting this definition are used in every day medical practice. The signed surgical consent form, the agreement between the midwife and the expectant mother as to what drugs are to be used in an emergency, or even the explicit instructions of a consumer to their caregiver or doctor can all be interpreted as advance directives. It is a mistake to think only of written advance refusals of treatment as the typical example of an advance directive.

However, we must acknowledge that advance refusals of life saving treatment raise the most difficult issues, because such decisions bring the fundamental right of consumers to refuse medical treatment under the NZ Bill of Rights Act into conflict with the statutory and ethical obligations on doctors to provide the necessaries of life.

2. Is the Directive Valid?

As an advance directive is simply the consumer's advance use of his or her right to make a health care choice, the issues surrounding such decisions are similar to those relating to the analysis of any consumer's consent to treatment. These issues can briefly be stated as:

1. Whether the consumer was competent to make the particular decision, when the decision was made; and
2. Whether the consumer made the decision free from undue influence; and
3. Whether the consumer was sufficiently informed to make the decision; and
4. Whether the consumer intended his or her directive or choice to apply to the present circumstances.

I believe that caregivers often have two roles to play in situations involving advance directives. Firstly, as front-line health care providers, caregivers can support a consumer when making and maintaining an advance directive, and thereby take steps to reduce the risks associated with the above issues.

Secondly, some caregivers will eventually be involved in a situation where medical staff are making decisions about complying with the terms of a consumer's advance directive. Those who provide continuing care to an aged consumer are likely to be in the position of having most recently spent time with that person. They may be therefore be the best source of information as to the consumer's ongoing expressed wishes since the time of formalising the advance directive.

3. Assisting a consumer to create and maintain an advance directive

Professional caregivers will increasingly be asked to advise consumers and to hold advance directives on their behalf. I would advise caregivers to encourage the consumer to involve the medical professional most familiar with the consumer - usually that person's GP - in this process. This will help ensure that such decisions are informed and workable. The time spent with a GP in preparing and maintaining an advance directive will provide:

(a) a witness as to the consumer's competency to make the decision;
(b) some protection from the possibility of undue influence;
(c) safeguards to ensure that the decision is made with the relevant medical information;
(d) a source of advice to other providers as to whether any new medical information would have affected the consumer's decision;
(e) a means of regularly reviewing and updating the decision;
(f) a witness as to the types of situation the consumer intended to cover; and
(g) a means of ensuring that the directive contains sufficiently accurate instructions for other providers.

Providing the medical information to assist in the making of an advance directive is a health service as defined in the Health and Disability Commissioner Act, and therefore the Code of Rights applies.

As emphasised in the Code, effective communication between the consumer and advisers is essential. If they have a good understanding of why the consumer wants an advance directive and what the consumer wants to achieve, then they will be able to provide the relevant information to enable the consumer to make an informed decision. I would also recommend that caregivers encourage the consumer to discuss this decision with close family or friends, and regularly review the content of the directive so that the decision is more likely to be viewed as consistent with current medical developments and the wishes of the consumer.

The involvement of friends or family will also reduce risk to providers who may have to implement the advance directive. In practice a provider can be placed in a difficult position when immediate family have not been informed of the advance directive by the consumer.

4. Consumer must be competent at the time of making the decision

Clearly the consumer must be competent at the time the directive is made. Often, by the time family, friends or caregivers become seriously concerned about the competence of the consumer, it is too late for the person to make an advance directive or to assign power of attorney in relation to personal care and welfare.

For this reason it is important that those caring for the aged, where there is reason to anticipate some future loss of competence, should raise these matters in a timely and considerate fashion.

If caregivers have reasonable grounds to question the competence of the consumer to make this particular decision, or to question whether the consumer is making this decision of his or her own free will, then these concerns should be respectfully raised with the consumer. If they are unable to satisfactorily resolve these issues with the consumer, then they could record their concerns and the reasons for them along with the consumer's advance directive. These notes may become crucial if the validity of the advance directive is later questioned by another provider or the courts.

However, caregivers must be careful not to draw conclusions about the consumer's capacity, or susceptibility to undue influence, based solely on personal feelings about the correctness of the consumer's choice. Right 7(2) of the Code 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.

Depending on the nature of the health care choice, diminished competency will not necessarily invalidate an advance directive. Certain choices may still be valid. For example an advance directive may instruct future providers not to administer any medication to the consumer, or to allow students to be present during any procedure. While it may later be shown that the consumer was not competent at the time to make decisions regarding medication, this does not mean that the consumer was not competent to make decisions regarding participation in teaching programmes. As Right 7(3) states:

Where a consumer has diminished competence, that consumer retains the right to make informed choices and give informed consent, to the extent appropriate to his or her level of competence.

5. The form of a valid advance directive

Because of the diversity of situations where a consumer could make an advance directive, it is difficult to pick a common thread or acceptable minimum form from the numerous Commonwealth court decisions that have recognised or discussed advance directives. There has been little New Zealand case law that has directly discussed advance directives. It was for these reasons that the Draft Code proposed the use of statutory declarations. However, the Minister decided that such an approach would unduly hinder the future development and recognition of advance directives. In her statement supporting her changes to the final Code, the Minister said that: " It is important that this right be expressed in a manner that is compatible with the common law on advance directives, and that does not inadvertently restrict the rights consumers already have to use advance directives." Accordingly, we can only discuss the general issues surrounding the use of advance directives, as the direction of future developments in the New Zealand courts is uncertain. Given this uncertainty, there are obvious practical advantages in having advance directives in writing to ensure as far as possible that the consumer's wishes are understood and followed.

6. The medical professional's obligation to comply with the terms of an advance directive

As stated previously, the validity of an advance directive will revolve around four key issues:

1. Whether the consumer was competent to make the particular decision, when the decision was made; and
2. Whether the consumer made the decision free from undue influence; and
3. Whether the consumer was sufficiently informed to make the decision; and
4. Whether the consumer intended his or her directive or choice to apply to the present circumstances.

When a provider personally agrees with the consumer's advance directive or choice, these questions are rarely raised. A subsequent claim by the consumer that the advance directive was not meant to be complied with would understandably be met by an argument that there were no reasonable grounds on which to question the directive's validity. The same argument must apply whether or not a provider personally agrees with the consumer's decision. Regardless of the professional's personal belief about the correctness of the consumer's choice contained in the advance directive, the professional cannot ignore the advance directive unless there are reasonable grounds to doubt one of these four factors. This is not to suggest that a medical professional called on to implement an advance directive must act contrary to his or her ethical beliefs. It simply means that they should not provide services in contradiction to an advance directive unless there are reasonable grounds to doubt the validity of the advance directive. If the advance directive requires or prohibits a procedure that the medical professional cannot perform or withhold because of moral or religious belief, then the care of the consumer should be passed to another provider.

7. Advance directives that exercise the right to refuse medical treatment

Right 7(7) of the Code states that "every consumer has the right to refuse services and to withdraw consent to services". This was included in the Code in recognition of section 11 of the New Zealand Bill of Rights Act 1990, which states that "everyone has the right to refuse to undergo any medical treatment". Therefore, the Code enables consumers to use advance directives to refuse medical treatment in the event that the consumer becomes incompetent or unconscious. Any unreasonable interference with the consumer's valid advance refusal of treatment will be a breach of the Code. When considering section 11 of the Bill of Rights Act, the New Zealand courts have said that a person has to be competent to exercise their right to refuse medical treatment . There is also some indication from the UK that, when deciding on the validity of an advance directive, courts will consider the medical information relied on by the consumer when making the directive, and whether there is new relevant information that would invalidate the consumer's previous decision.

When the situation involves the refusal of treatment or care necessary to save the consumer's life, the provider would be justified in carefully scrutinising the advance directive in light of the above four factors governing validity. In these situations it is advisable for the provider to take reasonable actions to consult with those persons who could provide information about the consumer's intention and reasoning when creating the advance directive. As stated previously, an advance directive that was made by a consumer who had regularly consulted with their GP or other adviser would be less open to dispute. It is important to have a good understanding of the consumer's reasons for making the advance directive. For example, a provider may find that a consumer was not aware of particular medical information when making the advance directive. However, consultation with the consumer's regular caregiver and family may reveal that the new information would have had no impact on the consumer's decision, as it may have been based on personal religious beliefs or choices relating to quality of life. If a provider wished to argue that a consumer's lack of specific medical information invalidated an advance directive, he or she would have to show that this information was likely to have been relevant to the consumer's decision. In situations where contact with persons who could advise on the consumer's intention is not possible, my previous comments concerning the provider's obligation to presume that the consumer was competent, and the need for reasonable grounds to doubt the validity of the advance directive, would apply.

I reiterate that under the Code of Health and Disability Services Consumers' Rights advance directives are a valid (and useful) tool for consumers who want to make future health care choices in anticipation of becoming incompetent or unconscious for extended periods of time. However, the workability of these directives will depend on the amount of consultation and assistance providers give to consumers who want to use this tool. Complying with an advance directive and ensuring its validity may sometimes require the provider to consult with the consumer's family, friends, GP or caregiver to obtain a better understanding of what the consumer would have wanted to happen in any specific situation. While I would encourage GPs' participation in the creation of an advance directive, I also recognise that such consultation will often place them in the position of being a source of later advice as to what the consumer would have wanted in a given situation. Many might argue that this is difficult for many GPs who may only see the consumer once or twice a year. The usefulness of GP advice may depend on how well the consumer is known to the GP and it may be preferable to rely on support persons, such as family and friends, in this process.

8. PPPR Act and enduring powers of attorney

Under the Protection of Personal and Property Rights Act 1988 (PPPR Act) people may appoint someone with an enduring power of attorney to make decisions on their behalf, in the event they become incompetent to make their own health care choices. This person would usually have a sufficiently close relationship with the consumer to enable him or her to reflect more accurately than a GP what the consumer would have wanted in a particular situation.

The PPPR Act allows for the appointment of an attorney for general or specific matters of personal care and welfare. Professional caregivers and GPs should recommend that the consumer seek independent legal advice prior to making such an appointment, as an extra safeguard against undue influence.

The exercise of an enduring power of attorney can become difficult when a person has some degree of competence but insufficient competence to make important decisions. For example, the situation where a relative with power of attorney consents to an unwilling but incompetent family member going into care.

At the same time, the provider or caregiver must recognise that the assignment of an enduring power of attorney does not effectively strip a person of all rights to make their own decisions. Even decisions with which relatives and caregivers may not agree or be comfortable may nevertheless be important choices for someone with a degree of diminished competence - for example the insistence on wearing shabby but comfortable clothes or the indulging of tastes which the provider or relatives may consider unhealthy or disagreeable but which are nevertheless legitimate choices. If these are decisions which the consumer is competent to make, such choices must be respected.

Despite the advantages inherent in the appointment of an enduring power of attorney, these powers are subject to one important limitation. The PPPR Act prohibits persons holding such powers from refusing any standard medical treatment or procedure intended to save the life of the consumer. These are exactly the type of decisions a consumer may want an attorney to make in the event that they become incompetent. Therefore the only means by which a consumer can exercise Right 7(7) of the Code to refuse lifesaving treatment in the event of future incompetence is by way of an advance directive in accordance with the common law.