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Sherratt, Emma --- "Are we forgetting something? Advance directives in the context of Alzheimer's disease" [2013] NZLawStuJl 3; (2013) 3 NZLSJ 1

Last Updated: 29 May 2014




One of the many challenges faced by those diagnosed with Alzheimer’s disease is the loss of capacity to make decisions about medical treatment. As a society, we place a high value on autonomy and the right to refuse healthcare services.1 Using an advance directive is a way to exercise this right to self-determination. But are advance directives an effective legal avenue for those with Alzheimer’s disease to maintain control of their medical treatment once competence has been lost? This article outlines the law on advance directives in New Zealand by exploring the common law derived from the United Kingdom and Australia. It will define the nature of Alzheimer’s disease and highlight the advantages of Alzheimer’s patients using advance directives. This article will then address the issues that may arise including the possibility that an advance directive is not followed or is invalid. It will be argued that New Zealand should promote the use of advance

directives to the elderly and create legislation to avoid the problems

LLB(Hons)/BSc (in progress), The University of Auckland. I wish to thank Jo Manning for her valuable guidance and supervision. Also thanks to Elizabeth Ogle, Hamish and Eleanor McQueen for their proofing, and my family for their support.

1 New Zealand Bill of Rights Act 1990, s 11.

arising from minimal guidance. A statute formalising the law on advance directives would provide much needed direction to health professionals and consumers.

A. Advance Directives

1. Definition and description

An advance directive, also known as a living will, is a statement made by a competent person indicating consent or refusal of consent to medical treatment once they have lost competence.2 It is an “embodiment of the patient’s autonomy and right of self- determination.”3 In New Zealand, the Code of Patients’ Rights specifies that “every consumer may use an advance directive in accordance with the common law”,4 and it can be made orally or in writing.5 This includes the ability to refuse services or withdraw consent.6 It does not entitle a person to receive the exact treatments they would prefer, but wishes may be expressed and these will be met where practical.7

Advance directives may also be overridden by legislation.8

2 Robin Jacoby “Ethical and Legal Aspects of Dementia” (2004) 3

Psychiatry 33 at 34.

3 HE v A Hospital NHS Trust [2003] EWHC 1017, 2 FLR 408 (Fam) at


4 Code of Patient’s Rights, Right 7(5).

5 Part 4.

6 Right 7(7).

7 Right 7(8).

8 Pauline Wareham, Antoinette McCallin and Kate Diesfield “Advance

Directives: The New Zealand Context” (2005) 12 Nursing Ethics 349 at


The common law relevant to the creation and implementation of an advance directive is found predominantly in the United Kingdom and Australia.9 In addition to case law, the United Kingdom has recently introduced legislation guiding the use of advance directives. The Mental Capacity Act 2005 (UK) sets out the formalities required for an “advance decision”, including that it must be in writing and signed by a witness.10

There are, however, no specific or formal requirements for the creation or revocation of an advance directive in New Zealand, so witnesses or particular formats are not needed.11 Instead, overseas authority likely to be applied in New Zealand indicates an advance directive is valid and legally binding when four key elements are satisfied: 12

(1) The individual was competent to make the particular


(2) They were free from undue influence when they made their decisions;

(3) They were sufficiently informed to make the decision; and

(4) They intended the directive to apply to the present circumstances.

Re T confirmed these conditions for the validity of an advance directive and stated that if the refusal of treatment is vitiated by an “overbearing [of] the patient’s independent will,” the advance directive

9 Sam McMullan “Advance Directives” (2010) 6 NZFLJ 359 at 359.

10 Mental Capacity Act, ss 24-26.

11 PDG Skegg and Ron Paterson (eds) Medical Law in New Zealand

(Brookers, Wellington, 2006) at 233.

12 Phillipa Malpas “Advance directives and older people: ethical challenges in the promotion of advance directives in New Zealand” (2011) 37 J Med Ethics 285 at 286.

will not be valid.13 This framework has been codified in the United

Kingdom by the Mental Capacity Act.14

Not only does an advance directive make lawful the failure to provide treatment where there would otherwise have been a duty,15 it can make the treatment unlawful if consent was refused in the advance directive.16 Advance directives are considered to be a fundamental part of respecting a person’s autonomy and this right to refuse medical treatment was discussed at length in the English case Airedale NHS Trust v Bland: 17

... if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so ... To this extent the principle of the sanctity of human life must yield to the principle of self-determination.

This statement was, however, qualified by the requirement that “all necessary steps have been taken to be sure that this is what he or she really desires.”18 Auckland Area Health Board confirms that in New Zealand the right to refuse medical treatment allows a patient to

“require support systems be discontinued.”19

13 Re T [1992] EWCA Civ 18; [1992] 3 WLR 782, [1993] Fam 95 (CA) at 116.

14 Mental Capacity Act 2005 (UK), s 3(1).

15 Skegg and Paterson, above n 11, at 233.

16 At 233.

17 Airedale NHS Trust v Bland [1992] UKHL 5; [1993] AC 789 (HL) at 864.

18 At 892.

19 Auckland Area Health Board v Attorney-General [1993] 1 NZLR 235 at


B. Advance Directives in the Context of Alzheimer’s Disease

1. Definition and description of Alzheimer’s Disease

Approximately 40,000 New Zealanders suffer from dementia,20 of which Alzheimer’s disease is the most common form.21 Although not exclusively found in elderly people, Alzheimer’s is predominantly found in those over 70 years old.22 Alzheimer’s disease results in a gradual deterioration of intellectual functions, including an inability to learn new things, understand language, perform daily tasks, and the progressive loss of memory.23 This cognitive impairment is caused by the deterioration of brain cells, which happens for an unknown reason.24

2. Advantages of Alzheimer’s patients using advance directives

Alzheimer’s disease generally has a gradual onset,25 allowing a patient time to think and consider their preferences for treatment and make an advance directive before they lose competence. Patients are likely to make advance directives anticipating cognitive decline with the knowledge of the end-of-life issues they may face, so they can plan accordingly. From this perspective, advance directives will be beneficial for patients with early stage Alzheimer’s disease to extend their

autonomy beyond loss of competence.

20 Malpas, above n 12, at 286.

21 Mental Health Foundation of New Zealand “Dementia” (booklet, 2002)

at 6.

22 Malpas, above n 12, at 286.

23 Mental Health Foundation of New Zealand, above n 21, at 6.

24 Alzheimer’s Society “What is Alzheimer’s Disease?” (factsheet, March

2012) at 3.

25 Mental Health Foundation of New Zealand, above n 21, at 6.

The foreseeability of Alzheimer’s also means that family members and doctors can be made aware of the presence of the advance directive. This avoids an advance directive not being followed due to healthcare providers being unaware of its existence. It is also useful for ensuring that the advance directive is carefully considered and made with the awareness of all possible consequences of the expressed choices.

Significantly, advance directives promote autonomy and informed decision making, encouraging patients to look at all treatment options.26

This model of healthcare challenges the traditional notion of

paternalistic medicine where a patient is told what is best for their treatment or quality of life without dialogue or consideration of the consumer’s opinion. Honouring advance directives can help healthcare providers perform their duties, particularly to give effect to the autonomy rights of their patient.27 Advance directives can also be used as a guide for treatment, shedding light on patients’ values and ideals which can influence what a doctor might determine as the patient’s best interests.28

Additionally, the use of advance directives is helpful for families. Watching a loved one gradually deteriorate as a result of Alzheimer’s disease can be a painful and emotional experience for friends and family members. One advantage of an advance directive is that it can reduce the burden of decision making or other concerns during end-of-life treatment. For example, a decision that has already been made in the form of an advance directive means that families are not left with the

difficult decision whether to withdraw life support. The family is able to

26 Wareham, McCallin and Diesfield, above n 8, at 357.

27 At 357.

28 At 357.

reassure themselves that the patient is receiving the healthcare they wanted and specifically asked for while competent, reducing the likelihood of distress for family members in a traumatic situation.29

3. Use and promotion of advance directives

Because of these advantages, recommending advance directive creation should be an important part of treating or caring for an Alzheimer’s patient. There is little knowledge of advance directives and their use or endorsement in New Zealand,30 but statistics from the United States indicate completion rates of advance directives sit at only ten percent of healthy Americans.31 This suggests that New Zealand should consider educating the public and promoting the use of advance directives, particularly to the elderly and those who care for them.

Currently, advance directives are promoted by several organisations including Alzheimer’s New Zealand Incorporated and The Voluntary Euthanasia Society of New Zealand. Among other societies, these organisations promote writing down preferences for medical treatment as the best way to create an advance directive.32 However, when hospitals in Canada and the United States have tried to encourage patients to write advance directives, “the take-up rate has been low”.33

Perhaps this can be attributed to a society that prefers not to think

29 KM Detering and others “The impact of advance care planning on end

of life care in elderly patients: randomised controlled trial” (2010) 340

BMJ 1345 at 1345.

30 Wareham, McCallin and Diesfield, above n 8, at 356.

31 Senza Fazel, Tony Hope and Robin Jacoby “Assessment of competence to complete advance directives: validation of a patient centred approach” (1999) 318 BMJ 493 at 493.

32 Malpas, above n 12, at 286.

33 Jacoby, above n 2, at 34.

about or plan for death. The cultural norm can be seen as fear or denial of death, and so the concept of advance directives is generally not appealing. Arguably, education about end-of-life issues and planning is necessary to alter society’s perceptions, and therefore make extension of autonomy a possibility for everyone.

Health providers are “ideally placed to educate consumers about advance directives.”34 Ron Paterson, former Health and Disability Commissioner, advised general practitioners (GPs) and others caring for the elderly to encourage and be involved in the creation of an advance directive.35 He stressed the importance of healthcare provider involvement in order to make sure a patient is informed, and to enable advance directives to be easily followed and understood in end-of-life treatment. This communication can be useful to garner a general understanding of a patient’s wishes or values. It is also a requirement set out in the Code of Patients’ Rights.36 If a GP is involved in the creation of an advance directive it is likely that there will be less contention surrounding the preferences of a patient.

Phillipa Malpas, however, argues that the constraints within the general practice setting, particularly on consultation time, mean it is difficult for GPs to promote living wills.37 The end-of-life discussion requires a holistic assessment of the patient’s values, potential future medical

34 Sue Johnson (ed) Health Care and the Law (3rd ed, Brookers, Wellington,

2004) at 102.

35 Ron Paterson, Health and Disability Commissioner “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).

36 Code of Patient’s Rights, Right 6(1).

37 Malpas, above n 12, at 287.

issues, and outcomes of treatment. Many GPs also may not have the skills or support to execute such a consultation accurately. Therefore, although GPs are the best placed to promote and assist with the creation of an advance directive, several consultations are likely to be required and GPs need to be “adequately skilled at communicating with older persons about end-of-life issues.”38 This requirement is likely to create a cost and therefore an access issue.

Malpas also points out that “caution should be exercised in promoting advance directives to older people” with areas of concern including ageist attitudes and stereotypes.39 Considering that many advance directives are aimed at refusal of treatment, they could be used as a way to cut costs on the extremely expensive healthcare required in chronic illnesses, where it could be seen that treatment merely prolongs the dying process. The ageing population in New Zealand, combined with requirements for extended treatment, are arguably a burden on limited resources.40

However, promoting the use of advance directives in order to solve financial constraints, or even family burdens, limits the integrity of an important medium which should be promoting the right to autonomy. For this reason, Malpas argues that advance directives could be viewed by elderly as a way for doctors to justify redirecting funds elsewhere,

instead of being concerned with the patient’s treatment preferences.41

38 At 287.

39 At 285.

40 John Bryant and others “Population ageing and health expenditure in

New Zealand, 1951-2051” (Ministry of Health, Wellington, 2004).

41 At 286.

Determining the validity and possible implementation of advance directives creates an opportunity for health professionals and family to make value judgments about the worth of an individual’s life, in direct opposition to the principle of sanctity of life. It may not even be an intended or conscious judgment about the rationing of funds, but this would still be contrary to the right to life. For example, among nurses the general attitude was found to be that old people are “bed-blockers” who focus limited resources away from those who have the potential to live longer with a greater quality of life.42

Concerning moral principles, ageist attitudes influencing rationing should not be assisted by advance directives being used for the wrong reasons. To combat this problem, it is suggested that advance directives are promoted in conjunction with relevant training of health professionals, and guidelines for both doctors and patients. Further, care should be taken in how advance directives are offered. Living wills should not be forced on people but instead promoted as an option to be explored and used if they wish. Assurances should be provided to patients that advance directives are not used to redirect funds or ration healthcare, and are instead important for extending their autonomy beyond loss of competence.

4. Advance directives not followed or consulted

One significant issue limiting the usefulness of advance directives for those with Alzheimer’s is that they may not be adhered to. “The principle of autonomy all too often succumbs to society’s interest in preserving life.”43 One study showed that doctors are more likely to

make subjective value judgments concerning quality of life rather than

42 At 286.

43 Sam McMullan, above n 9, at 360.

follow an advance directive created by the patient,44 while another found that in most cases involving emergency medicine, advance directives are not even consulted.45 The disregard for previously expressed wishes is also evident at the wider level of healthcare providers. Two New Zealand District Health Boards have expressed in their guidelines that “a cautious approach to advance directives should be taken.”46 A hospital or aged care facility with a policy that their medical professionals should not be guided by advance directives is creating an unnecessary barrier to the implementation of living wills and should be addressed.47

The nature of an advance directive is that it requires a doctor “with statutory and ethical obligations ... to provide the necessaries of life” to instead follow directions not to treat – in accordance with the right to refuse medical treatment.48 The natural instinct of a health professional, and the general requirement we place on our doctors, is to save lives to the best of their ability. The overarching duty of a doctor is to act in the best interests of the patient, yet obeying an advance directive may fly in the face of this central principle. Omitting to provide treatment, even if the non-action is requested, goes against the obligations and nature of

the healthcare profession. Additionally, health professionals who are

  1. Trevor Thompson, Rosaline Barbour and Lisa Schwartz "Adherence to advance directives in critical care decision making: vignette study" (2003)

327 BMJ 1 at 1.

  1. Danis Southerland and others "A Prospective study of advance directives for life-sustaining care" (1991) 25 J Med Ethics 22.

46 McMullan, above n 9, at 360.

  1. Lindy Willmott “Advance directives and the promotion of autonomy: A Comparative Australian statutory analysis” (2010) 17 JLM 556 at 564.

48 Paterson, above n 35.

both highly skilled and more knowledgeable than patients on issues of treatment do not like having their work dictated to them by the patient.

As a result of loss of control and the potential ethical dilemmas, advance directives may be disregarded by health professionals who are swayed by factors such as family opinion, implementation difficulty, fear of the legal consequences of omitting treatment, or an advance directive that is non-specific. It is easy to see how a doctor may choose to interpret an advance directive in accordance with what they or the family are most comfortable with, rather than truly considering the wishes of their patient. In contrast, if a healthcare provider agrees with the decisions expressed by a patient in an advance directive, it will rarely be questioned.49

A different observation was made in a study looking at whether advance directives were followed in rest homes in the US.50 It found that advance directives were treated seriously and preferences regarding feeding tubes in end-of-life treatment were honoured ninety-three percent of the time. It also found that residents in nursing homes were more likely to have created an advance directive than those cared for at home or in hospitals. Advance directives were a key part of the decisions made for treatment by staff, resulting from a culture of open dialogue and information, where the creation of advance directives in the context of holistic care meant autonomy was promoted to a high standard. Considering the value New Zealand places on the right to bodily integrity, this kind of environment is one to strive for in end-of-

life care.

49 Paterson, above n 35.

50 Cheryl Monturo “Advance Directives at End-of-Life: Nursing Home

Preferences for Artificial Nutrition” (2007) 8 J Am Med Dir Assoc 224.

Studies addressing healthcare professionals’ compliance with patients’ wishes as articulated in advance directives revealed that the greater the level of information concerning patients’ wishes, the higher the compliance with those requests.51 These findings encourage the use of disease-specific advance directives, which are more likely to describe in detail patients’ precise treatment choices. This method of selecting medical intervention preferences could be seen to provide the greatest level of control over treatment possible for someone who has lost their capacity to communicate. Others suggest that the best advance directives are those specifying the quality of life the patient would like to have, or their values that might influence a treatment decision instead of disease-specific choices.52 These are also considered to be more palatable to doctors. Such living wills could include preferences such as: not being left incontinent, objection to receiving intrusive treatment, or not wanting to be in pain.

Specific treatment directions may be detrimental because the unpredictable nature of medical events could mean that refusal of consent will be applied even if the situation is not what the competent creator intended.53 Additionally, new treatments improving quality of life may exist that were not known when the advance directive was made. Expressing values, rather than imposing specific treatment refusals, arguably has greater potential to be followed by healthcare

professionals. Such advance directives do not intrude on the treatment

51 Natalie Evans and others “A critical review of advance directives in Germany: Attitudes, use and healthcare professionals’ compliance” (2012) 87 Patient Education and Counselling 277 at 277.

52 Simon Towler and others “A National Framework for Advance Care

Directives” (Australian Health Minister’s Advisory Council, Australia,

2001) at 33.

53 At 33.

decisions of doctors, instead allowing the experts to use their knowledge and experience to do what is best for the patient within the preferences communicated through the advance directive. Arguably, leaving the actual treatment decisions in the hands of the doctors provides the patient with a real ability to address at the most basic level what they would object to regarding treatment of their body, as well as avoiding issues of ambiguity if the directions are written by someone with little medical knowledge.

Therefore, Alzheimer’s patients should give clear and specific instructions, make their advance directive with informed advice from their doctor, and if possible write it down because “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.”54 It is recommended that the content contains values and quality of life preferences rather than dictating specific treatment refusals. However, it could be best for some patients to create an advance directive containing both values and specific treatment refusals. For example, the living will could indicate the patient would like a certain quality of life, but definitely does not want one specific treatment.

Doctors should endeavour to remain objective when deciding to implement advance directives, and focus on the four legal requirements for a valid advance directive mentioned in the definition section above. Ron Paterson suggests that if a doctor is unable to carry out the wishes expressed in an advance directive for ethical or moral reasons, responsibility for care could be transferred to another provider.55

Medical professionals should remember that to not carry out an

54 Paterson, above n 35.

55 Paterson, above n 35.

advance directive is to deny someone their rights to bodily autonomy and self-determination.

Perhaps the tendency to err on the side of treatment rather than follow a living will is also a response to the “lack of legislative clarity and inaccessible law” about advance directives.56 It may seem much harder to take on the responsibility for stopping treatment than simply initiating or continuing the cascade of treatment. If the law, and professional guidelines, were clearer on the ways doctors should approach and respond to advance directives, it would be much easier for doctors to follow the expressed preferences. Additionally, guidelines surrounding advance directives would be very helpful to those facing the daunting task of creating a living will. If Alzheimer’s patients were informed about the best ways to extend their autonomy and how their preferences should be expressed, it is more likely the directions they leave will be followed.

5. Issues with the validity of an advance directive

In New Zealand there are few formal requirements regarding the legal validity of an advance directive, and the ways a patient can make an advance directive are diverse. However, doctors must be careful when the advance directive is delivered by a friend or family member; they should determine if the wishes legitimately came from the patient.57

Care must also be taken where the wishes of an Alzheimer’s patient were expressed informally.58 Remarks about preferences for cessation of treatment without serious consideration of consequences are often

made by competent people, but these are unlikely to be held as valid.

56 McMullan, above n 9, at 360.

57 Willmott, above n 47, at 563.

58 Skegg and Paterson, above n 11, at 547-548.

This is particularly due to the change in view many have when they lose capacity but find they still value their life, or discover that the quality of life they want to refuse treatment for is still worth living.

Peter Skegg argues that once someone has become severely incapacitated their views or oral remarks, which previously would not be valid, are more significant because they have an understanding of the quality of life experienced while in their circumstances.59 This view arguably extends to those suffering the initial stages of Alzheimer’s as long as they are still sufficiently competent. These patients will be confronted with what it is like to live with Alzheimer’s and perhaps will have enough understanding of the degenerative process to have their views given more weight.

A health practitioner cannot contradict an advance directive unless the validity of the document is in question.60 It may be invalid if it does not represent the most recent preferences of the patient, if it is too vague or if the patient was misinformed. In the context of a quadriplegic refusing artificial feeding, which would result in death, the Supreme Court of Western Australia held that for an advance directive to be valid, a patient must be fully informed of the consequences of any refusal of treatment decisions.61 Any kind of misinformation or inadequate discussion with health professionals could result in a patient’s living will being invalid.

The advance directive can also be held to be invalid if there has been a

change in the patient’s circumstances unanticipated at the time of

59 At 548.

60 Wareham, McCallin and Diesfield, above n 8, at 354.

61 Brightwater Care Group v Rossiter [2009] WASC 229, [2011] ALMD 431.

advance directive creation.62 This can be seen in the case of HE v A Hospital NHS Trust where a patient had signed an advance directive indicating refusal of any blood transfusions because she was a Jehovah’s Witness.63 There was, however, evidence that since the creation of the advance directive she had rejected the faith and become a Muslim. This was enough to indicate a change in the patient’s circumstances to invalidate the advance directive. This concept of changed circumstances could be extremely broad and has the potential to be used inappropriately as an excuse for not enforcing an advance directive.

In HE, Munby J also observed that if the validity of an advance directive is called into question in a situation where “irreparable damage to the patient’s health is to be anticipated,” then it is in the public interest for the health providers to seek a court’s declaration to determine whether treatment in opposition to the advance directive would be lawful.64 Because it is often the life of a patient at stake, the court will need to establish “the continuing validity and applicability of the advance directive ... by convincing and inherently reliable evidence.”65 On this approach, a doctor is justified in continuing to provide treatment until a decision is reached.66

To stop these issues preventing implementation of an advance directive, a specific time for renewal or revocation should be indicated at the time of its creation so that patients can always be sure their directions stay valid and represent their current values and ideals for

62 Skegg and Paterson, above n 11, at 233.

63 HE v A Hospital NHS Trust, above n 3.

64 At [53].

65 At [24].

66 Hunter and New England Area Health Service v A [2009] NSWSC 761, (2009)

[2009] NSWSC 761; 74 NSWLR 88.

medical treatment.67 This supports the argument that an advance directive should only be valid if it was “made fairly recently, and ... applies to the consumer’s current condition.”68

It is possible to look to the family or carers of an Alzheimer’s patient who have spent time with them after the advance directive’s creation in order to help interpret the wishes expressed in the advance directive or update preferences.69 The opinions of family or friends should, however, “rarely if ever be regarded as a sufficient reason (“lawful excuse”) for ceasing treatment that would otherwise have been provided.”70 In particular, care should be taken to ensure a living will is not invalidated due to undue influence in its creation. The Australian case of Hunter and New England Health Area Service v A stressed that if the advance directive is not an independent exercise of the person’s will, it will not be valid.71

There can also be issues of validity if the capacity of the patient at the time of creation of the advance directive is in question.72 In Hunter, it was determined that a patient’s preferences for treatment should be respected unless there is evidence to rebut the presumption of capacity. It is therefore important for Alzheimer’s patients to consult their medical professional and ensure they have the requisite capacity to

make a valid advance directive.

67 Wareham, McCallin and Diesfield, above n 8, at 355.

68 At 352.

69 Paterson, above n 35.

70 Skegg and Paterson, above n 11, at 548.

71 Hunter and New England Area Health Service v A, above n 66.

72 Willmott, above n 47, at 563.

In contrast, an advance directive is not invalid if it seems irrational or foolish to the treating health professionals. As long as all other requirements for validity are present, doctors must keep in mind that they do not have to find the living will reasonable to implement it. The United Kingdom addresses this issue in recent legislation, stating that “a person is not to be treated as unable to make a decision merely because he makes an unwise decision.”73 In the English case Re E, even though the advance directive was ultimately considered invalid due to incompetence at the time of creation, the seemingly irrational living will was not “less real” for it; it had the possibility of being enforced.74 It also does affect validity where the advance directive is based on “religious, social or moral grounds.”75

Along the same line of reasoning an advance directive will still be valid in the absence of terminal illness, or if the person is not in a persistent vegetative state.76 Although these situations might be seen as typical cases for advance directive use, there is no requirement for a certain level of illness and it is up to the competent Alzheimer’s patient to determine the quality of life at which they consider it appropriate to refuse medical treatment.

C. The Possibility of Legislative Change

The problems discussed show that the law in New Zealand on advance directives needs updating. Current legislation merely indicates that consumers have a right to create an advance directive “in accordance

73 Mental Capacity Act, s 1(4).

74 Re E (Medical Treatment: Anorexia) [2012] EWHC 1639 (COP) at [127].

75 Hunter and New England Area Health Service v A, above n 66, at 98.

76 H Ltd v J [2010] SASC 176.

with the common law.”77 As well as enshrining the common law in statute like this, guidelines should be set out for determining the capacity of those wishing to make advance directives. Guidelines on a legally binding form for living wills should also be created. This might be in the shape of a written document signed by a witness, as required in the United Kingdom’s Mental Capacity Act.78 A signed document could give health professionals confidence that the advance directive is authentic, valid and should be followed. A more formal advance directive also leaves less opportunity for abuse or fraud.79 Additionally, a legislative framework should inhibit medical practitioners from ignoring valid advance directives.80

Ron Paterson opposed formal requirements for the creation of advance directives on the basis that “such an approach would unduly hinder the future development and recognition of advance directives.”81

Particularly important is ensuring that no limitation or restriction is

placed on a patient’s ability to exercise their rights.

Lindy Willmott uses the consequences of recent Australian legislation to show how statutory regimes specifying the way advance directives should be made have “eroded rather than promoted the principle of autonomy.”82 She claims that regulating the circumstances in which an advance directive will operate undermines the right to bodily autonomy, and therefore legislation intending to facilitate the use of advance

directives should not contain inflexible restrictions as to form or

77 Code of Patient’s Rights, Right 7(5).

78 Mental Capacity Act, s 25(6).

79 Malpas, above n 12, at 288.

80 Willmott, above n 47, at 564.

81 Paterson, above n 35.

82 Willmott, above n 47, at 556.

operation.83 “Given that the common law was shaped by the principle of autonomy ... it should follow that the legislation also safeguards and promotes the autonomy of competent individuals” to refuse medical treatment.84 The aim of formality requirements is to promote autonomy and ensure that a patient’s views are not misrepresented or unduly influenced. Therefore the effect of legislation should not be in opposition to these ideals.

It is suggested that New Zealand compromises between these principles of sanctity of life and self-determination by leaving the possibility of oral advance directives open, while still giving health professionals and consumers more guidance. Ensuring that formal requirements are not too onerous means that those in situations where a patient cannot write an advance directive or has limited time are still left with a way to extend their right to autonomy beyond loss of competence. Low-level requirements as to form and operation should cater to these consumers, while also solving issues of validity or non- compliance.

D. Conclusion

This article has demonstrated that New Zealand is doing its healthcare consumers and medical practitioners a disservice by having minimal guidance and legislation on advance directives. It would be useful for all involved to have more direction in the legislation surrounding advance directives. This does not necessarily mean that advance directives need to require a particular form to be legally binding. Instead, Parliament

should set out the best requirements for determining capacity for those

83 At 557.

84 At 577.

with cognitive impairment like Alzheimer’s disease, and give guidance as to how these living wills are to be treated by healthcare professionals. Advance directives will then be followed more often, have fewer validity issues, and the prevalence of use should increase to the benefit of both patients and carers. New legislation should look similar to the United Kingdom’s Mental Capacity Act 2005. The best case scenario for an Alzheimer’s patient would be to write a detailed and informed advance directive after initial diagnosis and while still competent. The patient should obtain definite confirmation of capacity in conjunction with a health practitioner to ensure the latter’s awareness of the decisions the patient is making and knowledge of the consequences of these decisions. Obtaining legal advice throughout these processes will ensure that undue influence and invalidity are avoided.

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