The first National Forum on Advance Care Planning was held in Auckland last week. As much as autonomy is a cornerstone of the New Zealand Health Care system, Advance Care Planning is being taken up rather slowly. Perhaps this is because talking about a patient’s end-of-life expectations and choices can be challenging, but I think there is at least one other reason.
Advance Care Planning involves the recording of a patient’s treatment preferences, future choices in case he/she is no longer able to make decisions. The Code of Rights establishes that a person may use advance directives for this purpose. However, there is a bothersome legal uncertainty around advance directives. As it stands, no-one is quite sure how to tell if an advance directive is valid, and what if an advance directive is not quite in line with established medical practice. There is, perhaps, a certain resistance from health care providers toward advance directives because they are uncomfortable about the ethical and legal issues that may raise.
Unfortunately, advance directives are often depicted as legal instruments with binding force on health care providers, with reference to Right 7(5) of the Code of Rights, which is not helpful. Granted, a legally valid advance directive does have binding force in the same way as a competent person’s informed choice, but in practice it is far less certain how to secure or determine the validity of an advance directive. My suggestion is that it would better to treat advance directions purely as evidence of a person’s wishes regarding treatment decisions. Instead of focusing on validity as a threshold issue, it would be better to apply a holistic view and give advance directives appropriate weight in the decision-making process as evidence of the individual’s personal views and preferences.
Below is an essay I wrote to argue that the key provision for correctly applying advance directives is Right 7(4) of the Code of Rights. This is a detailed section on the provision of health care services to non-competent persons, which can be employed to give guidance as to the true role of advance directives. The advantages of utilising this provision are that it is easy to understand while not lacking in legal force, and it is specific to the New Zealand medico-legal environment.
The Role of Advance Directives in Health Related Decision-Making
Undoubtedly, advance directives can be valuable, however, there are many practical difficulties surrounding their use. Part of the problem is that New Zealand courts have not yet dealt with advance directives in any detail. This is particularly important in this area of law since, in light of New Zealand’s unique medico-legal environment, the adoption of the law of other jurisdictions is not straight-forward.
When a person becomes incompetent to make health related decisions, health care providers can be required to make those decisions for them. It would be reasonable to expect that advance directions simplify such decision-making for the provider. However, this cannot be the case if there are no clear guidelines as to how to deal with advance directions. Providers may have to anticipate that following or declining to follow an advance directive may lead to litigation or other complications. Under the circumstances, health care providers cannot be expected to be comfortable with advance directives, rather, they will to turn to the courts for declarations, using time and money in the process, both of which are scarce commodities in health care.
Advance directives in the Code of Rights
The only reference to advance directives on the New Zealand statute books is in the Code of Rights. It reaffirms the right to use an advance directive,[1] and clarifies the meaning of the term for the purposes of the Code of Rights.[2] It is worth noting that the Code of Rights only applies in the context of health care services, [3] and breach of the Code may only attract professional liability.[4]
Right 7(5)
Right 7(5) of the Code says that “[e]very consumer may use an advance directive in accordance with the common law.” The effect of this provision is that non-compliance with a valid advance directive is a breach of the Code as well as the common law. In other words, it expressly brings advance directives within the jurisdiction of the Health and Disability Commissioner. However, it does not give any guidance as to validity of advance directives or how to approach them. It does not purport to legislate or to clarify the law, it merely refers to the common law as it stands.
This is problematic, firstly, because New Zealand courts have not laid down detailed rules that govern advance directives. In the case of All Means All the High Court confirmed that an advance directive refusing consent to a future treatment given by a competent person is valid and provides a legal excuse for not providing that treatment.[5] It is worth noting that having a lawful excuse to not provide treatment is not the same as having an order not to provide it. However, although not expressly considered, it is implicit in the decision that disregarding the advance directive would be inconsistent with the Code of Rights[6] and, importantly, with the right to refuse to undergo medical treatment.[7] This decision is important in terms of the legal status of advance directives and the impact of the New Zealand Bill of Rights.[8] However, the validity of the direction was not in issue in the case, since the health care provider and the person giving the direction were in agreement.
Secondly, the wording of Right 7(5) is slightly misleading. The reference to the common law rules as external source has led academic commentators, officials and policy makers who considered this question to propose, at least impliedly, that the rules of dealing with advance directives are entirely outside the Code itself.[9] Quite apart from the fundamental uncertainties surrounding common law rules, there is nothing in the Code to suggest that the Code itself cannot bear on the determination of validity and applicability of advance directives.
Also implicit in this approach is that Right 7(5) is accepted as one of the exceptions from the basic rule that the provision of health services is contingent on the informed choice of the consumer.[10] According to this view a valid advance directive can replace the informed choice of the person, when he or she is not competent to make a choice. In such cases validity in legal terms is decisive, rendering the application of advance directives a threshold issue. This can give disproportionate weight to technicalities so that one may lose sight of the underlying question as to whether the person would consent to the treatment if he or she were competent. The application of the law as it stands leaves room for substantial ethical debate.[11]
Considering that the Code explicitly deals with the situation where a person is not competent to make an informed choice,[12] it is not necessary to separate cases where there is an advance directive from other cases where there is not one, merely because Right 7(5) says that a person has the right to have one. It is submitted that Right 7(4) remains valid in a case where a person is not competent to make a choice regardless of whether he or she has an advance directive.
Clause 4, definition of advance directive
The brief explanation of the meaning of advance directive in the Definitions clause is consistent with the traditional common law principles. The common law in relation to advance directives will be discussed in more detail below. According to the definition, in keeping with the case law, there is no requirement as to form.[13] Advance directives may relate to a broad range of instances, collectively referred to as health care procedures.[14] It seems that some aspects of personal care, such as nutrition and hydration also fall under these procedures through the inclusion of health services, the meaning of which includes “services to prevent […] ill health” and “nursing services”.[15] This, however, sheds little light on how to approach an advance directive.
Advance directives in the common law
The law
So far, New Zealand courts have not been required to spell out the law governing advance directives. Declaratory litigation in comparable jurisdictions such as the United Kingdom, Australia and Canada may provide some guidance as to how advance directives will be dealt with, should they come before the New Zealand courts. While the courts will almost certainly look at overseas decisions, it must be borne in mind that the New Zealand medico-legal landscape has some unique features that distinguish it from other jurisdictions. Also, several Canadian provinces and Australian states have legislative framework governing advance directives, therefore case law may not be applicable to cases arising in New Zealand.
English courts have had the opportunity to lie down the common law rules of validity and applicability of advance directives.[16] The Health and Disability Commissioner summarised these rules and adopted them for the purposes of the Code of Rights.[17] The common law requires that the person was competent at the time of making the advance directive;[18] the person was not unduly influenced in making the decision;[19] the advance directive must be applicable to the actual circumstances.[20] The Commissioner also included the requirement that the person must have been sufficiently informed to make a decision.[21] In the context of refusal to undergo medical treatment this last requirement must be understood to mean that the person must have been provided sufficient information to appreciate the consequences of his or her choice, but the exercise of the right, as enshrined in s 11 of the New Zealand Bill of Rights, should not depend on whether the decision seems to be well-informed or rational.
The common law rules leave a number of questions open. It is debated whether advance directives can lapse, and whether change in circumstances or developments in the facts should be allowed to render them ineffective. The level of specificity required is also not settled. It is impossible to foresee the exact circumstances in which a person may find him or herself non-competent. Therefore, the wording of a directive must be sufficiently flexible to remain valid in a range of circumstances, while it must not be too vague as that can also present difficulties. It is difficult to find the right balance and there is a risk that the weaknesses in the wording will only come to light when the matter goes to court and the actual words used in the direction come under scrutiny. This can lead to technical debate as to the meaning of the words such as whether a feeding tube is a “life-saving machine”, potentially distracting the decision-maker from considering the real issue.[22]
Ethical issues
Ethical considerations are also insufficiently dealt with by the common law. Concerns have been expressed as to a person’s right to bind him or her future self, particularly in the context of diseases that tend to change one’s personality.[23] Philosophical arguments go both ways. In one view there is continuity and one remains substantially the same person despite any changes to his or her personality in the course of the disease, therefore one must be allowed to make an advance decision based on his or her fundamental interests and beliefs in life, while still able to appreciate them, and bind him or her future self to that decision.[24] Others argue that one’s best interests may trump any advance directions, as the values on which those directions were based lose their meaning for the person who has developed a new personality.[25]
These ethical issues, troubling as they are, cannot be dealt with by the courts when considering the application of the common law. It is not as though, as a matter of law, one can become a new person by the passing of time or by the progression of a disease. No court will, for example, agree to absolve a person from contractual obligations based on such philosophical arguments. Nevertheless, this does not diminish the gravity of the problem, and it is desirable to have a legally sound approach that, unlike the common law, does address the ethical side of the issue.
Application in practice
The right to life and society’s interest in the preservation of life are such fundamental principles that any ambiguity or uncertainty can render an advance directive legally inapplicable, particularly, if it purports to go against those principles. In keeping with this, the common law provides a number of legitimate excuses for health care providers for non-compliance with advance directives.[26] Therefore, if the common law method is followed where advance directives operate on an all-or-nothing basis, the person issuing the direction can hardly be certain that his or her wishes will be honoured.
Evidential issues
In advancing the fundamental principle of autonomy, the courts have consistently refused to prescribe any formal requirements for advance directives. While it is desirable that there be no unjustifiable fetters on an individual’s ability to exercise his or her right to refuse medical treatment, the general lack of requirements can lead to a false sense of assurance that health care providers and the courts will take a robust and flexible approach to the interpretation of advance directives. However, it is clear from the cases that, in the context of advance directives that purport to refuse consent to medical procedures, the evidential foundation of the directive is a critical issue and “if there is doubt that doubt falls to be resolved in favour of the preservation of life.”[27]
The burden of proof is on the person who wishes to invoke the advance directive to establish its existence and validity.[28] When life is at stake, health care providers and courts alike will take a cautious approach and have to be satisfied that the advance directive indeed exists, its exact content can be ascertained and its validity can be confirmed. This can be particularly problematic if the direction is not in writing. Consequently, the first possible reason why an advance directive may not be followed by a health care provider is simply that its content or its very existence may be uncertain.
Specificity
Another critical issue that may arise is whether the direction was intended to cover the particular situation.[29] Even if the direction has been put in writing, if no legal or medical advice had been sought in its preparation, the wording may well prove to be too vague or ambiguous to be upheld. General reference to one’s values and beliefs will be of no use, for “if the individual is to override the public interest [in the preservation of life], he must do so in clear terms.”[30]
On the other hand, if the wording is too specific, its scope of application of the directive may become too narrow. A person may be required to draw up directions for a multitude of possible eventualities. Indeed, the current advance care planning guidelines suggest that a person should make a list of “particular conditions or states that they would find unacceptable.”[31] However, this approach can be quite onerous and possibly discourage people from making advance directives.
Change in circumstances
Another ground on which non-compliance with an advance directive may be justified is where unforeseen changes in circumstances occur between the time of the issuing of the direction and the time when its execution is considered.[32] The availability of new treatment options, fundamental change of values, beliefs and interests have all been considered as potentially vitiating the validity of an advance directive, provided that the change is of such importance that might have caused the person to change or revoke the direction.[33]
Misinformation or incorrect assumptions
As mentioned above, refusal of treatment is a fundamental right, the exercise of which depends solely on whether the person is competent to exercise it, not on the reasons for which it is exercised.[34] It is reasonable to suggest, however, that if it can be positively shown that an advance decision to refuse medical treatment is based on misinformation or incorrect assumptions, there will be a strong argument in favour of non-compliance.[35]
Naturally, health care providers will not be comfortable with a direction that seems to be ill-informed or where the maker does not seem to have appreciated the consequences of the direction. The concern, again, is that society’s interest in the preservation of life is so strong, and the health care provider’s duty of care is so compelling that, if there is any doubt, the principle of autonomy will have to yield.
An alternative approach
The common law approach to advance directives focuses narrowly on the direction itself and the circumstances of its making in order to determine whether it meets the threshold to be binding. This is an all-or-nothing approach that, considering the discussion above, leans heavily towards allowing non-compliance due to the weight given to the societal interest in the preservation of life. From the health care provider’s perspective the real issue is that it is difficult, if not impossible, to predict a court decision on whether a given advance directive has crossed the threshold. The provider is simply unable to build advance directives into its decision-making procedure if it is treated on an all-or-nothing basis.
The alternative method proposed in this essay looks at the fundamental question of whether the person wants the treatment or not. This patient-centred approach is based on Right 7(4) that deals with treatment of a non-competent person. The inquiry concentrates on the person, and takes into account all the available information, including advance directives, to answer the question, as paraphrased from the wording of the provision, “[Would] the provision of the services [be] consistent with the informed choice the consumer would make if he or she were competent”?[36]
Autonomy
It is fundamental in the New Zealand health care system that, save for exceptional circumstances, the provision of health services is subject to the informed consent of the consumer. A person subjecting him or herself to any treatment does so voluntarily.[37] The Code of Rights, in large part, revolves around the promotion of the consumer’s autonomy.[38] The Code of Rights also builds on common law principles and, importantly, on the New Zealand Bill of Rights[39] in this respect.
Undoubtedly, it can be difficult to ascertain whether a person would agree to a certain procedure if he or she is not competent. However, this does not mean that issue of consent can be disregarded. The Code of Rights is clear on this point, answer must be had, and it must be in the affirmative, before treatment can be provided.[40]
Right 7(4)
It is submitted that, taking into consideration all the unique features of New Zealand’s medico-legal landscape, Right 7(4) of the Code of Rights clearly expresses, in robust terms, the correct approach to determining whether consent to treatment exists when the person him or herself is unable to express it, including the case where an advance directive has been issued.
The method
Firstly, the wording of the provision is broad. It applies “[w]here a consumer is not competent to make an informed choice and give informed consent”.[41] It must be noted that the only exception is where there is a “person entitled to consent on behalf of the consumer”, but there is no exception for advance directives per se.[42]
Secondly, where the provider is seeking to provide services under this provision, it must do so in the best interests of the person, and must take “[r]easonable steps […] to ascertain the views of the consumer.”[43] It is reasonable to expect that the provider will access the person’s medical records, and that it will make an effort to communicate with next-of-kin, family and whanau, or other closely related persons. Also, any relevant information and documents that have been brought to the provider’s attention should be used by the provider to ascertain the views of the person. This clearly includes an advance care plan and any advance directives included or otherwise presented.
Thirdly, once the views of the person have been ascertained, the provider must consider those views and form an opinion, on reasonable grounds, as to whether the person would consent to the proposed treatment if he or she were competent.[44] The reasonable-grounds requirement along with the expectation that individual autonomy and the individual’s right not to undergo treatment against his or her will, be respected, the provider has to consider all the information it has about the views of the person. Each individual piece of information has to be treated as evidence and given due weight according to its reliability and applicability in the circumstances.
The provider has to carefully assign an appropriate weight to each piece of information. An advance directive has to be scrutinised as to reliability, clarity and applicability. However, in the health care setting, this exercise does not have to be complicated with a legal assessment as to the validity of the directive. It is expected that if the advance directive is recorded according to best practice, as detailed in the Advance Care Planning Guidelines[45] and, perhaps, it is supported by other evidence, such as relevant medical records or the opinion of the relatives and carers, will carry enough weight for a provider to be able to come to the conclusion that the person would like his or her advance directive to be honoured, even if it means for the provider that it must withhold life-saving treatment.
Difference from the common law method
In contrast to the common law approach, in this exercise general expressions of beliefs and values are of real importance as evidence of the person’s views as to whether a certain procedure would be acceptable. Uncertainties or ambiguities are not fatal to advance directives as, even though not binding, they remain of evidential importance providing valuable information in the decision-making process.
Rather than having to inquire into the legal validity of an advance directive, the provider is asked to inquire into questions it is more familiar with, such as capacity of the person at a certain time, changes in circumstances, clarity and applicability of the directive. During this inquiry the provider is concentrating on the person in their care, which gives focus and meaning to such an inquiry. Here the provider is not required to answer an abstract legal question, which it is not equipped to do.
Ethical issues
In response to the ethical issues discussed above, the following should be considered. The wording of Right 7(4) suggests that it is the law in New Zealand that the provider must consider the needs and views of the person in the present. Therefore, the weight of an advance directive must be adjusted according to extent to which the person in the present would still agree with that direction, were he or she able to express his or her views. It is suggested, that this should affect the way the common law is to be developed.
Criminal liability
It must be acknowledged that adhering to the Code of Rights may absolve from professional liability, however it does not directly affect criminal liability, therefore there is an argument that fear from criminal charges will prevent providers from making the decision not to provide life-saving treatment relying on a method that is based on the Code of Rights. On the other hand, New Zealand courts have not dealt with this issue, and it is submitted that it would be quite unfortunate if the courts developed a body of law that is inconsistent with existing health regulation and its interpretation. Adherence to the Code of Rights in good faith should be sufficient for a provider to minimise, if not to exclude, the possibility of being found liable at a criminal court.
Conclusion
The provisions of the Code of Rights are more suitable for a health care provider to apply in its decision-making processes, than the common law. In an area where, on the one hand, the common law is uncertain, while, on the one other, there is a clearly expressed provision in the Code of Rights that is applicable, the latter should be put to use. Given that the New Zealand courts have not expressed their views on the law governing advance directives, and it is difficult to predict how it might develop, the guidance provided by the Code of Rights is most valuable.
The method to deal with advance directives, proposed in this essay, has the advantage that it involves an inquiry under Right 7(4), the elements of which are familiar to health care providers. Thus, the issue is presented in a light that providers are more comfortable with, which ensures that advance directives are given appropriate consideration in the decision-making procedure. Moreover, if providers have readily accessible law to guide them, the chances of bias towards the preservation of life that arises out of fear of getting the law wrong, are significantly reduced.
[1] Code of Rights, cl 2, Right 7(5).
[2] Code of Rights, cl 4.
[3] Code of Rights cl 1; and see Health and Disability Commissioner Act 1994, s 3.
[4] Health and Disability Commissioner Act 1994, s 45.
[5] Department of Corrections v All Means All [2014] 3 NZLR 404 at [72].
[6] Ibid at [60].
[7] New Zealand Bill of Rights Act 1990, s 11.
[8] Ibid.
[9] See for example Sam McMullan “Advance Directive” (2010) 6 NZFLJ 359; Iris Reuvecamp “Advancing individual autonomy in healthcare decision making — the role of advance directives” [2015] NZLJ 79; and Health and Disability Commissioner “Advance Directives, Living Wills and Questions of Competence: Presentation to the New Zealand Hospitals Association Conference ‘Chance or Choice – Staying Motivated in Aged Care” (7 March 1997) Health and Disability Commissioner’s Website <www.hdc.org.nz>.
[10] See Code of Rights, cl2, Right 7(1).
[11] See for example McMullan, above n 12, at 360-1.
[12] Code of Rights, cl 2, Right 7(4).
[13] HE v A Hospital NHS Trust [2003] 2 FLR 408 at 417.
[14] “Health care procedure” is given a broad definition under s 2 of the Health and Disability Commissioner Act 1994.
[15] Health and Disability Commissioner Act 1994, s 2. This is important in the context of Bentley v Maplewood 2014 BCSC 165, where advance directives were not applicable to “personal care” services.
[16] Re T (An Adult: Consent to Medical Treatment) [1992] 2 FLR 458; NHS Trust v T (Adult Patient: Refusal of Medical Treatment) [2004] EWHC 1279 (Fam).
[17] Presentation of the Health and Disability Commissioner, above n 9.
[18] Re T, NHS Trust, above n 16.
[19] Re T, above n 16.
[20] Ibid.
[21] Presentation of the Health and Disability Commissioner, above n 9.
[22] W Healthcare NHS Trust v H [2005] 1 WLR 83.
[23] D Parfit “Personal Identity” (1971) 80 The Philosophical Review 3.
[24] Ronald Dworkin, “Autonomy and the demented self” (1986) 64 Milbank 4.
[25] Rebecca Dresser “Missing persons- legal perceptions of incompetent patients” (1994) 46 Rutgers LR 609.
[26] See L Willmott, BP White, and MT Howard “Refusing Advance Refusals: Advance Directives and Life-Sustaining Medical Treatment” (2006) 30 MULR 211.
[27] NHS Trust, above n 16 at [23]-[24]
[28] Ibid at [23]
[29] Refusing Advance Refusals, above n 26 at 10; Re: T, above n 13.
[30] Re T (Adult: Refusal of Treatment) [1992] 4 All ER 649 at 661.
[31] Advance Care Planning – A guide for the New Zealand health care workforce (August 2011) Ministry of Health <www.moh.govt.nz> at 17.
[32] S Michalowski “Advance Refusals of Life-Sustaining Medical Treatment: The Relativity of an Absolute Right” (2005) 68 Mod L Rev 958 at 969.
[33] Ibid.
[34] See All Means All, above n 5, at [19] and [44].
[35] Re T above n 30, at 663 and 668.
[36] Code of Rights, cl 2, Right 7(4)(c)(i)
[37] Although there are some exceptions e.g. under Part 2 of the Mental Health (Compulsory Assessment and Treatment) Act 1992.
[38] Code of Rights cl 2, Rights 3, 5, 6, 7, and, arguably, Rights 1, 2 and 8 as well promote different aspects of or prerequisites to the consumer’s autonomy.
[39] New Zealand Bill of Rights Act 1990, s 11.
[40] Code of Rights, cl 2, Right 7(4)
[41] Ibid
[42] Ibid
[43] Code of Rights, cl 2, Right 7(4)(a) and (b).
[44] Code of Rights, cl 2, Right 7(4)(c)(i).
[45] ACP guidelines, above n 31.
