Chapter 14 - The Proper Practice and Law relating to decision-making about Treatment and Care at the End of Life

Contributed by Nick O’Neill with input from Carmelle Peisah, current to 30 April 2021.

14.1 Introduction

Dying is the final act of living. Despite the many advances in medical knowledge, treatment and technology, every person born will die. Many will live long lives, some will have tragically short lives, others will be cut off in their prime, but all will die. These statements may seem obvious but these very advances in medical care have changed societal expectations about the ability to forestall death, which is both unrealistic and at odds with finite medical resources and an ageing population with increasingly complex medical comorbidities. At the same time, when patients, families and many doctors think about the “end of life” they are usually thinking about death, not about death and dying, rendering patients, families and health care professionals alike reluctant to discuss, and make decisions about, death and dying.

As we discuss in this chapter, decisions about the end of life are more than discussions about death, and best interests include best interests around a “good death”. These muddied and turbulent waters have created a perfect storm for conflict within families, and between families and health professionals, culminating in legal actions where the law is asked to decide about death and dying. However, doctors’ knowledge of end of life law is scant. (1). This is problematic because most conflict around the end of life is around too much treatment, with potential consequences of liability for assault where treatment is provided without consent; or not enough treatment, with potential criminal responsibility for murder or manslaughter where treatment is withheld or withdrawn unlawfully.(2).We, in this chapter, and other comprehensive Australian resources dealing with end of life laws aim to redress these gaps in understanding.(3)

Chapter 11 dealt with developments in the common law in relation to the medical treatment of people who lack capacity, an issue particularly salient at the end of life. These developments have emerged as a necessary response to advances in medical expertise and technology which allow life to be sustained for long periods when without that technology, treatment and nursing expertise the person would soon die. Chapter 13 dealt with the development of advance directives in Australia.

This chapter deals with the evolution of ethical and clinical practices and the Australian common law and legislation relevant to decision-making about treatment and care when a person’s life is coming to an end. However, first it is useful to have an idea of the scope of the issue.

14.2 Background issues relevant to decision-making about treatment and care at the end of life

14.2.1 In what contexts is such decision-making required.

Although not considered part of everyday medical practice by most doctors other than palliative care and intensive care physicians, it remains a fact that most doctors are involved, or at least should be involved, in end of life decision- making. Traditionally, when doctors are asked about their involvement in end of life decisions, they only considered medical decisions made just prior to death. For example, in 1997, a postal survey of 800 Australian doctors showed that the nature and proportion of all Australian deaths that involved a medical end-of-life decision were: euthanasia, 1.8%, administration of drugs with the explicit intention of ending the patient's life, without a concurrent, explicit request by the patient, 3.5%; withholding or withdrawing of potentially life-prolonging treatment, 28.6%; and alleviation of pain with opioids in doses large enough that there was a probable life-shortening effect, 30.9%.(4) This study was conducted at a time when euthanasia was available in Australia in the Northern Territory brought about by the Rights of the Terminally Ill Act 1995 (NT), which was repealed by intervention of the Commonwealth Parliament when, in 1977, in the exercise of its “Territories” power in 1977, when it passed the Euthanasia Laws Act 1997 (Cth).(5) Euthanasia is a term that is deeply disputed, but is considered a distinct concept from voluntary assisted dying which is prescription or supply of a lethal drug that a competent patient self-administers, and is now available in Australia.(6) A discussion of the distinction between euthanasia and voluntary assisted dying is contained in the Position Statement of the Royal Australian College of Physicians. (7)

This 1997 study focused on doctors attending deaths and their decisions around the provision of life- prolonging, or life-shortening treatment. This has been the traditional focus of medicine. However, when survival or not is the only focus of discussions around end of life, it distorts discussions distracting from equally important issues such as quality of life and quality of dying, rendering conflict between health professionals and patients and families likely. This focus on survival or not has led to the misuse of the terms “ceilings of care” and “treatment limitations,” often perceived by patients and families as abandonment. In fact, while there may be limitations to the provision of life-sustaining treatment specifically, there are never limitations to care and treatment. To inform patients and families unilaterally that “we are now withdrawing care or treatment” is provocative and will inevitably lead to conflict, unless there is open dialogue about the risks and benefits of treatment options available and the reasoning behind clinical recommendations that takes into account patient and family wishes, preferences and relationships.

This issue was recognized some time ago by intensivists. For example, in 1984 Dunstan noted:

The success of intensive care is not, therefore, to be measured only by the statistics of survival, as though each death were a medical failure. It is to be measured by the quality of lives preserved or restored; and by the quality of the dying of those in whose interest it is to die; and by the quality of human relationships involved in each death (8).

This broadening of the concept of success at the end of life, otherwise known as outcomes in medical culture, to quality of life, quality of dying and human relationships, was, and remains, profoundly insightful in a medical culture otherwise pre-occupied with measurable outcomes such as Mortality and Morbidity figures, none of which include these perceived “soft” measures of success (9)The salience of death and dying in Intensive Care has long-been recognized by the UK Faculty of Intensive Care Medicine and the Australian and New Zealand Intensive Care Society (ANZICS) in their respective statements on care and decision-making at the end of life for the critically ill. (10) Importantly, these Statements very clearly articulate ethical and legal frameworks for end of life care, as well as advance care planning and consensus building, communication and documentation.

Beyond these more obvious acute care contexts, end of life decision-making is equally important in many chronic care settings yet has been often neglected. Increasingly, there have been pushes to encourage decision making and early discussions of death and dying into routine management of chronic respiratory disease, chronic heart failure, and chronic renal disease. (11)

Perhaps the area where this has most been recognized is residential care, where frailty, complex medical co-morbidities and dementia confer an increased risk of mortality. (12) A Dutch End of Life in Dementia study (2007-2011) which surveyed physicians about the last phase of life in 330 residents with dementia in aged care facilities, demonstrated the nature and frequency of end of life decisions in this setting. In just under half (42%) of the residents, decisions were made to not start potentially life-sustaining treatment (e.g. hospital transfer, artificial hydration and nutrition) while in 54% decisions were made to withdraw such treatment. No differences were observed in treatment decisions for residents with advanced and less advanced dementia, although the latter more frequently received antibiotics.(13). Follow-up of nursing home residents with dementia has shown that incident problems with intake (occurring in about 34%) and pneumonia (occurring in about 28%) are common and strongly associated with mortality, and not just in those with advanced dementia, mandating a need for end of life decision making and planning.(14)

One context for end-of life decisions sparsely dealt with in the literature but which is a clinical and practical reality for doctors, carers and families alike, is end-of-life decisions involving institutionalized, intellectually disabled people. In a study from the Netherlands, 89 doctors reported 222 deaths of intellectually disabled people for which an end of life decision was taken in 97 cases (44%); in 75 the decision was to withdraw or withhold treatment, and in 22 it was to relieve pain or symptoms with opiates in dosages that may have shortened life. In the 67 most recent cases with an end of life decision the patients were mostly incompetent (63) and under 65 years old (51). Only two patients explicitly asked to die, but in 23 cases there had been some communication with the patient. In 60 cases the doctors discussed the decision with nursing staff and in 46 with a colleague. The authors made the point that the proportion of such decisions in the total number of deaths is similar to that in other specialties, although the discussion of such decisions is far less open in the care of intellectual disability than in other specialties.(15) There is no evidence that things have changed since this study was conducted in 1997. Yet the value and potential of involving people with intellectual disability in end of life decision making has been increasingly recognized,(16). Bekkema et al, based on interviews with 33 people with mild intellectual disability, identified two key themes around end of life decision-making around care relationships, namely the often unfulfilled need to respect autonomy by ascertaining, recording and honouring wishes; and, “being there” for the person.(17)

People with mental illness similarly aspire and have the right to autonomy and control over the dying process and levels of intervention provided. Yet these rights and goals of care are often not respected. Moreover, behavioural and communication problems may hinder identification of needs, including pain, and hinder treatment by medical staff who are unfamiliar with treating people with mental illness. Communication, advance care planning and palliative care provision all need to be adapted to accommodate different levels of ability, communication, symptoms and living situations – including homelessness – of people with mental illness.(18)

14.2.2 What sort of decisions need to be made?

14.2.2.1 Do not resuscitate and do not hospitalise orders

Not for resuscitation orders (NFRs) are a necessary aspect of medical practice and have received currency both locally and internationally. Such orders are regularly used in the acute care setting. Over ten years ago, a cross-sectional postal survey of 157 Australian hospitals showed that 54% had NFR policies and 39% had standardised order forms for documenting such decisions. Of interest was that while 89% of hospital policies stated that competent patients should be involved in discussions relating to the decision not to resuscitate, only 38% stated that the patient must be informed of the decision and only 16% stated that the competent patient’s wishes had to be considered.(19) Since that survey, the initiative to encourage discussions between patients and doctors about end of life care and the push for doctors to complete acute Resuscitation Orders or Plans - described in Chapter 13.(20) has led to NFR policies (now more commonly called Resuscitation Plans in Australia) now being mandatory in all public hospitals.(21)

At the same time, there has been increasing recognition that such decisions need to be planned in advance in the residential care setting. As discussed in Chapter 13, an Australian study demonstrated the benefits of advance planning for nursing home residents in terms of emergency hospital transfers, stays and mortality as well as increased satisfaction for staff and families.(22) Frequent transitions back and forth between the nursing home and hospital are burdensome for patients and do not promote their health and well-being,(23) The deleterious effect of acute inpatient care on nursing home residents, particularly those with dementia, is well recognized.(24) Moreover, the majority of hospitalizations of nursing home residents with advanced dementia are due to infection, most commonly respiratory infection. These are often treatable in the nursing home, so avoiding hospitalisation.(25)

Notwithstanding their demonstrated benefits in avoiding unnecessary and potentially harmful hospitalization for people with dementia, do not hospitalise (DNH) orders remain less used than NFR orders. A study from Colorado showed that 32% of residents in US nursing homes had “do not resuscitate” directives, whereas less than 2% had “do not hospitalise” directives. Factors associated with having a do not hospitalise or do not resuscitate directive at the resident level included older age, cognitive impairment, functional dependence, and Caucasian ethnicity. Ethnic minorities were less likely to have do not hospitalise and do not resuscitate directives even after controlling for disease status, demographic, facility, and geographic characteristics.(26)

NFR orders may act as indirect DNH orders. In a study of 36 nursing homes (almost 4,000 residents) in central and eastern Missouri in the US, DNR orders independently reduced the risk of hospitalization for lower respiratory tract infections. The authors postulated that NFR orders may function as a marker for undocumented care limitations or as a mandate to limit care.(27)

One of the problematic aspects of discussions about resuscitation is the pervasiveness of the assumption that the decision about whether or not to initiate resuscitation is usually dichotomised as a choice between life and death, a choice that does not exist because resuscitation is rarely successful especially in certain populations. The dichotomised and reductionistic position of “resuscitate or not” avoids more pertinent and useful discussions around treatment options, including benefits and burdens of such at the end of life. Instead, it requires decision makers to make moral judgements about the value of the patient’s life, including their relationships with significant others (Elliott J. and Oliver, I. (2008) Choosing between life and death: patient and family perceptions of the decision not to resuscitate the terminally ill cancer patient 22 (3):179–189).

Clearly, decision-making around the end of life is more than “resuscitate or not”.

14.2.2.2 Artificial feeding and hydration

The loss of desire or ability to feed or hydrate oneself may be a feature of several end-stage diseases. For example, the skills to feed oneself, to use eating and drinking utensils, and to consume items recognized as food or drink thereby maintaining nutrition and hydration, may be lost as dementia progresses(28). Difficulties eating and drinking are so common in end stage dementia that they are considered a ubiquitous feature of this stage. Being totally disinterested in food or allowing food to fall out of the mouth is often a sign that the person may be entering the last weeks or days of life.(29)

Swallowing and nutrition are also frequently impaired in Parkinson’s disease and cancer involving the upper gastrointestinal tract. While cancer is sine qua non for talking about death, increasingly it is being recognised that such discussions need to occur with other diseases such as dementia and Parkinson’s disease. Over the last decade there has been growing recognition of the need to discuss prognosis and advance care planning in regards to Parkinson’s disease.(30) Each disease is different and requires different planning and decision-making for the end of life.

Notwithstanding these variations, the UK National Gold Standards Framework (GSF) Centre in End of Life Care has developed the GSF Prognostic Indicator Guidance to support earlier recognition of patients nearing the end of life. Triggers that suggest that patients are nearing the end of their life can be elicited by:

1. The “surprise question”: Would you be surprised if this patient were to die in the next few months, weeks, days?
2. “General Indicators” including decline in functional performance, comorbidity of other conditions, being bed or chair bound, and most importantly, progressive weight loss more than 10% in the past six months; and
3. As stated above, and emphasized in the GSF triggers, reduced oral intake is a specific important trigger in dementia.(31).

Clearly, gradual reduction and eventual cessation of oral intake is a normal part of and a signal of the dying process,(32) yet the decision whether or not to intervene when this happens is one which still arouses much controversy and is sometimes the precipitant for legal intervention. The act of feeding in particular is often equated with the provision of love and care, and bystanders often find it difficult to accept or allow food refusal at the terminal stages of diseases such as dementia, without intervention.(33) There is much fear among families that failure to institute artificial feeding or hydration or removal of these leads to people being "starved" to death or dying in discomfort from thirst. Yet, in palliative care units (and home care) food and drink, as well as assistance with eating and drinking, are always available to satisfy a patient’s thirst and hunger, and mouth care to relieve a dry mouth or lips.

More aggressive “medical” treatments for dealing with these symptoms include artificial feeding, administered via a percutaneous endoscopic gastrostomy tube (PEG), and hydration, administered via a subcutaneous line (a small needle inserted under the skin). The benefits of either of these treatments remain unproven in the palliative care setting, particularly for people with advanced dementia. Multiple studies have shown that feeding tubes are seldom effective in improving nutrition or increasing weight, maintaining skin integrity or preventing pressure ulcers by increased protein intake, preventing aspiration pneumonia, minimizing suffering, improving functional status, or extending life.(34)(35)(36). There is also no evidence that medically administered nutrition and hydration enhances comfort or dignity during the dying process. While there is evidence that terminally ill patients have biochemical dehydration, a relationship between hydration or biochemical status and symptoms has not been established and thus there is very little evidence at present to show that rehydration relieves symptoms. Rather, arguments have been made that fluid infusion might lead to fluid overload, and reduce comfort.(37)

As a result, specific inclusion of artificial nutrition and hydration as a part of advance care planning has taken on growing importance particularly in the care of patients with advanced dementia.(38) The primary issue in patients with dementia may be autonomy and the right of an individual to decide whether or not a tube should be placed at all. However, much of case law is derived from cases of patients who were in a persistent coma .(39)

The clinician considering such issues must take into account advance directives, ethical considerations, legal and financial concerns, emotional factors, cultural background, religious beliefs, and the need for a family meeting incorporating all of these principles.(40)

14.2.3 The decision makers

14.2.3.1 The patient

Ideally, patients are able to determine their own decisions for end-of-life care. The 21^st century has very much heralded an age of self-determination when it comes to end-of-life decisions, or at least that is the ideal and increasingly, the community expectation of such. As has been seen in Chapter 13, this has been borne out by people being encouraged to make advance directives or to at least express their views about how they would like to be cared for at the end of life. Notwithstanding this, despite international pushes to encourage the making of these, they are rarely made and physician communication with patients about goals of care and resuscitation decisions have not measurably changed in the past 20 years.(41)

Notwithstanding this, legislation has been crafted to encourage the making and use of advance directives. Note in particular the Advance Care Directives Act 2013 (SA) and the subsequent Advance Personal Planning Act (NT). The provisions of both these Acts are designed to ensure that the advance decisions made by the makers of advance care directives in South Australia and advance personal plans in the Northern Territory about how they want to be treated and cared for at the end of life are given effect to as far as possible. For example, the South Australian Act gives the Supreme Court jurisdiction to review decisions of substitute decision-makers appointed under advance care directives and to conduct those reviews as expeditiously as possible. These reviews are limited to ensuring that the substitute decision-maker's decision is in accordance with the advance care directive and limitations and requirements set out in the Act. Furthermore, the Court cannot undertake such a review in relation a decision to withdraw or withhold health care if the giver of the advance care directive is in the advanced stages of an illness without any real prospect of recovery and the effect of the health care would be merely to prolong the person's life.(42) See generally Chapter 13. 5. 3 for South Australia and Chapter 13. 5. 2 for the Northern Territory.

However, patients often lose decision-making capacity before their wishes regarding end of life care have been made known. In those situations the treating team and family need to plan the care that both consider to be in the patient’s best interests, that reflects the person’s wishes and values as much as possible and avoids inappropriate under and over-treatment. The common law and appropriate practice for the consensus approach for making end-of life decisions for incapable persons will be discussed further in this chapter.

14.2.3.2 Decision-making by treating doctors

There is probably no other decision that so taxes a doctor’s moral, ethical and religious beliefs or generates such stress than that related to end-of life care. Despite the push to encourage end of life care discussions and planning, many doctors remain reluctant to discuss death and dying not only with patients and families, but with each other. Both nursing staff and specialist trainees bear the brunt of this. Perceived powerlessness in the face of poor communication and hierarchical decision-making in health care culminates in high levels of moral distress over end of life decision-making.(43).

A study of staff with experience caring for dying patients in England, found a culture of avoiding death and dying in acute hospitals. Difficulties and avoidance in diagnosing dying led to late diagnosis of dying, partly due to prognostic uncertainty but compounded by a culture that did not acknowledge death as a possible outcome until death was imminent.(44) There is further avoidance in subspecialties such as psychiatry (although less so in old age psychiatry, especially with dementia care) where death is not expected and some consider that “death is not our business.”(45).

Much of medical decision-making around end of life is subjectively based. As discussed in Chapter 6 (6.11.3.9) probably the most subjective and therefore variable concept in contemporary medical end-of -life decision making is the concept of futility.(46) While there is some agreement amongst doctors that futile treatment implies treatment with a low chance of improving quality of life, or of prolonging life of acceptable quality, or of bringing benefits that outweighed burdens of treatment, these are of themselves very subjective constructs and provide fertile ground for disagreement with family perceptions of futility, as a 2016 study shows.(47).What is heartening from this 2016 study is that futility of treatment was considered more broadly, beyond futility preventing death, a dichotomisation which is both alienating and abandoning of patients as discussed above in 14.2.1. Notably, in a 2013 United Kingdom Supreme Court case, the concept was considered more broadly, namely whether the proposed treatments would be futile in the sense of being ineffective or being of no benefit to the patient.(48) Further to our arguments regarding a broader conceptualisation of best interests, the goals of treatment and the decisions to be made at the end of life, the Supreme Court noted that the assessment of the medical effects of the treatment was only part of the equation. Sometimes the treatments in question could be very burdensome; but those burdens had to be weighed against the benefits of a continued existence. Further, regard had to be had to the patient’s welfare in the widest sense, and [in this case] great weight to be given to Mr James’ family life which was “of the closest and most meaningful kind”.(49)

The English case law shows the attempts to develop a to define what is in the best interests of a patient by a single test, applicable in all circumstances. In the Burke Case, the English Court of Appeal said that this was not possible and went on to note that the Guidance issued by the General Medical Council [of the United Kingdom] “Withholding and Withdrawing Life-prolonging Treatment: Good Practice in Decision-making (2002)” expressly warned against treating the life of a disabled patient as being of less value than the life of a patient without disability, and was right to do so. (50)

Despite these indications from the Supreme Court of the United Kingdom and the England and Wales Court of Appeal which, however, are not binding on Australian courts, the problem remains, who is to judge benefit, or whether a life is worth living? The difficulty arises when the person believes that life is worth living even when if it is associated with severe pain or disability, and this is not shared by the doctor.(51).This was at the core of the Burke Case, which we have already referred to and which was finalised in the England Wales Court of Appeal. It involved a 45 year old man with spino-cerebellar ataxia (a neurodegenerative condition) who was fearful that at the end of his life artificial hydration and nutrition (ANH) would be withdrawn, and he “did not want a decision to be taken by doctors that his life is no longer worth living.” (52). The Court equated best wishes with the wishes of a competent patient, which this man was, and with respect to our earlier comments in the introduction of this chapter, of the consequences of not honouring such:

We have indicated that, where a competent patient indicates his or her wish to be kept alive by the provision of ANH any doctor who deliberately brings that patient’s life to an end by discontinuing the supply of ANH will not merely be in breach of duty but guilty of murder. Where life depends upon the continued provision of ANH there can be no question of the supply of ANH not being clinically indicated unless a clinical decision has been taken that the life in question should come to an end. That is not a decision that can lawfully be taken in the case of a competent patient who expresses the wish to remain alive.

However, the England and Wales Court of Appeal continued:

There is one situation where the provision of ANH will not be clinically indicated that is not relevant to Mr Burke's concern but which received a disproportionate amount of attention in this case. In the last stage of life the provision of ANH not only may not prolong life, but may even hasten death. Unchallenged evidence from Professor Higginson illustrated the latter proposition. At this stage, whether to administer ANH will be a clinical decision which is likely to turn on whether or not it has a palliative effect or is likely to produce adverse reactions. It is only in this situation that, assuming the patient remains competent, a patient's expressed wish that ANH be continued might conflict with the doctor's view that this is not clinically indicated.

As we understand Munby J's judgment, he considered that in this situation the patient's wish to receive ANH must be determinative. We do not agree. Clearly the doctor would need to have regard to any distress that might be caused as a result of either upholding or overriding the expressed wish of the patient. Ultimately, however, a patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient's clinical needs. (53)

Whatever doctors mean by futility, and alternatives such as “inappropriate treatment” may serve no better. Medical contributions to end of life decision-making must be clear, transparent and justified (54)

As Lady Hale, then Deputy President of the Supreme Court of the United Kingdom noted in the Aintree Case, an Appeal from the England and Wales Court of Appeal, in 2013:

It was accepted in the Burke Case (as it had been earlier) that where the patient is close to death, the aim may properly be to make his dying as comfortable and as dignified as possible, rather than to take invasive steps to prolong his life for a short while (see paras 62-63). But where a patient is suffering from an incurable illness, disease or disability, it is not very helpful to talk of recovering a state of "good health". The patient's life may still be very well worth living. Resuming a quality of life which the patient would regard as worthwhile is more readily applicable, particularly in the case of a patient with permanent disabilities. As was emphasised in Re J (1991), it is not for others to say that a life which the patient would regard as worthwhile is not worth living.(55)

Otherwise, we rely on medical decision-making that is often variable and inconsistent. A postal survey from 1996 of 2172 Australian doctors prompted treatment responses to four very typical hypothetical case scenarios including an 80-year-old “incompetent” woman with life-threatening and acute illnesses with and without an advance directive; a 33-year-old competent woman with terminal and acute illnesses insisting on intensive care and a 56-year-old competent man with motor neurone disease who requested “physician-assisted death”. The study showed that treatment decisions by doctors are not consistent and vary more with the individual sociodemographic characteristics of the doctor (such as gender, religion and where they trained) than the nature of the medical problem. {Waddell C, Clarnette RM, Smith M, Oldham L, Kellehear A. “Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia” Med J Aust. 1996 165(10):540-4}}.Although the study was undertaken when euthanasia was available in Australia (see footnote in 14.2.1), while advance care planning was hardly discussed in Australia, it remains very relevant. There is nothing to suggest that doctors are any more consistent in their decision-making and honouring of patient wishes, now over twenty years later, even in the presence of more interest in advance planning. A study from the Netherlands of nursing home physicians, relatives and nurses showed that relatives attach more importance to advance directives than physicians, and have more permissive attitudes towards hastening death (56).

Doctors still consider the medical condition of the patient, the wishes of the family, and the interpretations of the patient’s quality of life by their care providers to be more important than advance directives and policy agreements. In a study of ten wards in two nursing homes in the Netherlands, involving 35 patients with dementia, eight doctors, 43 nurses and 32 families, doctors' decisions about withholding the artificial administration of fluids and food from elderly patients with dementia were influenced more by the clinical course of the illness, the presumed quality of life of the patient, and the patient's medical condition than they were by advanced planning of care. The authors made the point that in an attempt to understand the wishes of the patient, doctors try to create the broadest possible basis for the decision-making process and its outcome, mainly by involving the family.(57)

This study has recently been echoed in Australia. A majority of 867 respondents to a cross-sectional postal survey of specialists most likely to be involved in end-of-life care in the acute setting (emergency medicine, geriatric medicine, intensive care, medical oncology, palliative medicine, renal medicine and respiratory medicine) said that they would provide treatment in a hypothetical scenario, despite an advance directive refusing it. Patient-related clinical and ethical considerations were more determinative of medical decision-making than the law, regardless of which state the doctors worked in. (58)

In this regard, we note that in South Australia health practitioners are required to comply with a relevant binding provision of the advance care directive. Also they should, as far as is reasonably practicable, comply with the non-binding provisions of the advance care directive. In addition, they must, as far as is reasonably practicable, seek to avoid any outcome or intervention that the person who gave the advance care directive would wish to be avoided (whether such wish is expressed or implied). Contravention of these obligations amounts to unprofessional conduct and may expose the health practitioner to the disciplinary provisions of the legislation relating to their registration as a health practitioner. (59)

The matter is put a little differently in the Advance Personal Planning Act (NT), but to the same effect. Under that Act health care providers in the Northern Territory are required to take health care action (give treatment) in accordance with a relevant advance consent decision contained in an advance personal plan made by the person to be given the treatment. In the absence of such an advance consent decision, those who may make substitute decisions about the proposed health care action are the Northern Territory Civil and Administrative Tribunal (NTCAT), the decision maker appointed under the advance personal plan or a guardian appointed for the person by NTCAT and given authority to consent to health care action. There are detailed provisions about this matter that are set out in Chapter 13. 5. 2. However the key issue for here is that if a health care provider takes health care action in relation to the person other than in reliance on the consent provisions, their action constitutes unprofessional conduct and may expose the health practitioner to the disciplinary provisions of the legislation relating to their registration as a health practitioner.(60)

Ultimately, we would suggest that the concept of “medical end-of-life decision making” is an anachronism. Notwithstanding the exception that no doctor can be compelled to give intrusive or burdensome treatment not in the patient’s best interests (which per se is subjective), we suggest that the doctor’s perception of the benefits of treatment and the patient’s quality of life is only relevant as information to aid decision-making by the patient or their proxy. We would suggest that the doctor’s role is to provide the information about the risks, nature and benefits of the treatment to the patient, with adequate support for decision-making, or in the absence of patient participation, to the proxy decision-maker, to decide about quality of life, benefits, and best interests at the end of life. We have moved on in the contemporary health environment from the doctor as decision-maker, or the arbiter of best interests, to the doctor as the source of information to inform that decision, unless the effect of that decision will be to cause harm by distress or burden to the patient, in which case the doctor cannot be compelled to give treatment. The law gives precedence to the voice of a competent patient expressing their wishes in a valid and applicable advance directive. We re-iterate that to ignore such may have professional consequences at minimum and potentially legal liability for manslaughter where treatment is withheld unlawfully, or for assault where treatment is provided without consent.

14.2.3.3 Decision-making by family members

Functioning as a substitute decision-maker (for example person responsible, guardian or statutory health attorney) typically places great moral, emotional, and cognitive demands on that person. Surrogates (substitute decision-makers) can experience long-term physical and psychological outcomes from being decision-makers.(61) However, particularly in dementia, forewarned is forearmed. These difficulties can be avoided by earlier discussions and planning to enhance family expectations and understanding of the progression of the disease.(62)

Decision-making by substitute decision makers who are family members is particularly fraught when the decision is about artificial hydration and nutrition at the end of life.(63) Using “substituted judgment” to guess what a loved one “would have wanted” in a given situation is extremely difficult. In studies world-wide using hypothetical scenarios to compare patients' choices and surrogates' predictions of those choices, surrogates demonstrated only low to moderate predictive accuracy.(64)(65)(66)(67)Neither patient designation of surrogates nor prior discussion of patients' treatment preferences improved surrogates' predictive accuracy. Patient-designated and family surrogates incorrectly predicted patients' end-of-life treatment preferences in one third of cases. These data undermine the claim that reliance on surrogates is justified by their ability to predict incapacitated patients' treatment preferences. Further, family caregivers often have a significantly more aggressive attitude toward each examined life-sustaining treatment for their ill family members than the patients' own stated preferences.(68)

The substituted judgment standard is not the only standard used by proxies to make decisions. Several factors such as patient preferences, perceptions of the patient’s quality of life and severity of caregiver burden are taken into account by caregivers when making decisions.(69) It is interesting to note that caregivers of patients with dementia report lower scores on quality of life than patients themselves, partly because of the patient’s response shift and partly because of caregiver’s bias as a result of their care burden: the higher the care burden the lower they rate the patient’s quality of life.(70)(71) Caregivers often have difficulty distinguishing between their own wishes and the opinions and wishes formerly held by the patient(72)

Further variation in the nature and quality of proxy decision making is conferred by the amount of information given to the proxy decision-maker. The crucial “information step” which we refer to throughout this text, is equally important for proxy decision makers whose decisions about end of life are only as good as the amount of information they receive about prognosis, and advantages and disadvantage of various treatment options (and comfort care is still treatment). In turn, it is known that proxies who are adequately informed are much less likely to authorize burdensome interventions.(73)

In societies, such as in Asian countries, where physicians' respect for patient autonomy is frequently subordinate to the power of the family. Disagreements between a patient and family about end-of-life care may result in the patient's preferences being overridden at the end of life.(74). In Chinese society, while a patient may want to know about and discuss their illness and prognosis, family members or medical professionals may conceal such information from them. Wen et al have noted:

In Chinese society, informing bad news is not only a shocking event in traditional culture, but also related to major issues for the family. Moreover, families do not want to let patients know about the terminal conditions because they do not know how to deal with the attendant emotions, and even medical teams often do not know how to handle such families (75)

This is important for health care professionals to understand. While Australian health culture, as the hegemonic culture, may uphold certain ethical principles, patients and families bring with them a wide range of different cultural values which need to be understood when supporting and treating patients at the end of life. Additionally, pursuit of aggressive Western autonomy or indeed a “reductionist checklist approach to autonomy” (particularly that driven by institutional policy and procedure) may blindside clinicians at the expense of equally important best interests judgments (76)

In Australia, the over-riding ethical and legal responsibility of the health care professional is to the patient.(77) As discussed above, this has recently been embodied in Northern Territory and South Australian legislation. If the person’s prior expressed wishes regarding treatment or its limitation are known, then these wishes take priority over those of the family, although there needs to be a strong commitment at such times to resolve any disagreement by discussion and facilitation of the family’s acceptance of the person’s wishes.(78) Physicians and families frequently report conflicts when making end of life decisions.(79) Dealing with demands for what is perceived by health care providers as inappropriate treatment frequently causes substantial emotional and moral dilemma for health care workers and at times culminate in legal action. Conversely, inappropriate requests by families to abandon appropriate treatment cause equal turmoil although are less likely to culminate in legal action. When in doubt and in the absence of expressed patient wishes, “standards of best interests” and “appropriate care”- treatment that falls within the bounds of standard medical practice or interventions used by at least a “respectable minority” of expert practitioners – are best adopted.(80)

Thus on the basis of standard care alone, and without appeal to medical futility, clinicians have a sound basis for refusing to provide ineffective, experimental or outdated treatment.(81)

Notwithstanding that, when disagreement among health care professionals, the patient and their family persists, the clinician needs to understand the misunderstandings, emotional anguish and disagreements about fundamental values that may lie at the heart of such conflict and seek some sort of negotiated solution.(82)(83)(84) The quality of communication by health care providers significantly influenced family satisfaction with decision-making and end of life care(85)

End-of-life decisions may also precipitate intra-familial conflict such that group or consensual decision-making involving multiple family members is preferred over individual surrogate decision-making.(86). We know that family discord per se is associated with stronger preferences for life-prolonging treatments and weaker preferences for palliative care. (87)Not surprisingly, the end of life provides a fertile ground for the acting out of family conflict and fragile intrafamilial relationships, where family members play out rivalries by purporting to represent either the precedent wishes, or the best interests, of the now incapable person. Sometimes such issues provide a focus for children to play out issues of sibling rivalry or competitions to be the “best child”. Blended families, where there may be conflict between children of the first marriage and the current partner can be particularly vulnerable to this. For example, Williams DCJ noted in the opening statement in D Lane v Northern NSW Local Health District stated:

Where do family relationships go so wrong as to be the cause of so much damage and cost to themselves and to the wider community? This is a case study of such a problem and a problem that is becoming increasingly prevalent in our legal system, involving the commencement and continuation of litigation that should really not have been allowed to go on as long as it has.(88)

14.2.3.4 Reconciling disparate views of patient, family members and professional staff

Even when physicians, nurses and relatives are guided by a best interests principle, it seems that differences in religious beliefs, perspective of the patient, and responsibility can lead to different attitudes towards end-of-life decisions. Factors rated as important at the end of life or intrinsic to a “good death” include being in control, mentally aware, free from pain, and at peace with God, knowing when death is coming and what to expect, being shown dignity and given privacy, choosing where death occurs, having time to say goodbye and access to expertise. As variable as these are, they are differentially ranked as important by patients, doctors, families, and care providers.(89)

Consequently, as we discuss above, the best-case scenario is that end-of life decision making is self-determined. Ideally this is provided by a competent patient directly or in the form of an advance directive. In the absence of such, when the patient has lost capacity this would involve a shared decision based on supported input from the patient, with input from the doctor and the substitute decision-maker using their shared understanding of the patient’s goals, values and preferences, as well as the potential burdens and benefits of the clinically indicated treatment options, to make a decision about what treatments should take place. The goal is to reach a shared decision that reflects the best understanding of the patient’s prognosis and of the patient's wishes in the current clinical circumstances.(90)

Clearly issues about when, where and how a person should die create a potential for human conflict, yet most of the time these decisions are able to be made through consultation and a degree of consensus between the doctor and staff, the patient and the family. However, in the absence of consensus or when uncertainty arises as to the “right” decision to be made, courts, sometimes tribunals and sometimes Public Guardians/Advocates are called upon to make these decisions.

14.3 The Australian practice and law

14.3.1 The Australian common law

The Supreme Courts of the States and Territories have wide-ranging jurisdictions including the prerogative jurisdiction that developed in the common law often called the parens patriae jurisdiction.(91) This jurisdiction arms the courts with jurisdiction to meet new situations that sometimes need to be resolved by court intervention and decision-making. In those States in which the parens patriae jurisdiction is used in relation to issues and disputes about medical treatment, it is seen as protective in nature.(92)

In a case brought to the Supreme Court of New South Wales by the sister of a man who was unconscious and in relation to whom his treating doctors intended to withdraw life-sustaining treatment, O’Keefe J said:

The parens patriae jurisdiction of the Supreme Court extends to the protection of the life and bodily integrity of persons who are unable to do so for themselves because of various exigencies, one of which is unconsciousness.

In exercising its parens patriae jurisdiction in the area of present concern the paramount consideration is to preserve the life of or safeguard, secure or promote, or prevent the deterioration in the physical or mental health of the person the subject of the exercise of the jurisdiction. Any operative or medical procedure that is carried out must be undertaken "to save their lives, or to ensure improvement or prevent deterioration in their physical or mental health". This conclusion has also been supported by reference to the principle of necessity, with the consequence that treatment or other procedures undertaken must be in the best interests of preserving the life, health or welfare of the person concerned.(93)

He went on to note that:

The law in Australia is well settled that it is lawful for, and the duty of, a hospital which or doctor who has undertaken the care of a patient who is unconscious, to carry out such treatment as is necessary and appropriate to safeguard the life, health and welfare of that patient, even though such patient is in no position to give or refuse consent to the course taken.(94)

O’Keefe J went on to state that:

There is undoubted jurisdiction in the Supreme Court of New South Wales to act to protect the right of an unconscious person to receive ordinary reasonable and appropriate (as opposed to extra-ordinary, excessively burdensome, intrusive or futile) medical treatment, sustenance and support. In this day and age ordinary reasonable and appropriate treatment, for a person of the age and condition of [the patient], would extend to the administration of antibiotics and appropriate feeding. The court also has jurisdiction to prevent the withdrawal of such treatment, support and sustenance where the withdrawal may put in jeopardy the life, good health or welfare of such unconscious individual. What constitutes appropriate medical treatment in a given case is a medical matter in the first instance. However, where there is doubt or serious dispute in this regard the court has the power to act to protect the life and welfare of the unconscious person.(95)

The doctors agreed to continue artificial nutrition and hydration pending the hearing and O’Keefe J ordered that the patient “be provided with necessary and appropriate medical treatment directed towards the preserving of his life and the promoting of his good health and welfare” and that no Not for Resuscitation Order be made in respect of him without prior leave of the court.(96)

However, the courts will not always require the continuation of treatment. In a 2004 case, the Supreme Court of New South Wales refused to intervene to stop the withdrawal of treatment from a man who was unconscious and in a deep coma, because it was not satisfied that the withdrawal of [the patient’s] present treatment is not in the patient’s best interest and welfare.(97)

In that case, the patient was admitted to a hospital after an asystolic cardiac arrest. His heart had stopped beating completely depriving his body, including his brain, of oxygen. As a result the patient had been unconscious and apparently in a deep coma. His treating doctor considered that active treatment should cease and that he be placed under palliative care. This would have the effect of reducing his life expectancy from possibly weeks to possibly days. The application was brought by members of the patient’s family in order to restrain his treating doctor and other medical staff at the hospital from altering the patient’s treatment. Family members believed that, contrary to medical opinion, there were some slight signs of improvement in the patient’s condition and that, if the current treatment regime continued the patient’s condition might improve.

However, the judge was satisfied that there was no medical evidence suggesting that there was any real prospect of improvement if active treatment were to be continued for any significant period of time. Except for extending the patient’s life for some relatively brief period, the active treatment was futile. Also it was burdensome and intrusive.(98)

In 2005 Skene reviewed those decisions as well as decisions of the Supreme Court of Victoria, VCAT and the Queensland Guardianship and Administrative Tribunal and was confident that, consistent with decisions in the USA and the UK, it is lawful in Australia to withhold or withdraw treatment where the commencement or continuation of it would be futile and not in the incapable person’s best interests.(99) Consistent with the guidelines issued in 2005 by the NSW Department of Health and discussed in the next section below, Skene suggested a process for dealing with for end-of-life cases in Victoria at least. A diagnosis should be made and confirmed over time and in consultation with the family. If there was consensus on the issue that continued treatment was futile, then the treatment could be withdrawn, with or without a court order.(100)

She noted that if the now incapable and dying person had “expressed in advance a wish that supports the withdrawal of treatment” an application could be made to the VCAT to appoint a guardian to refuse the treatment. However, she did not believe that such a course of action was necessary because she accepted the view of Lord Goff of Chieveley that a patient’s wishes could not be relevant if they had no awareness of their condition because they were in, for example, a “persistent vegetative state”.(101)

Skene also noted that, because substitute decision-makers, family members or others do not have a legal right to require treatment to be continued against medical advice, the only course for those wanting continuation of the treatment was to challenge the diagnosis by applying to the Supreme Court. In such a case, the only issue would be the patient’s condition and prognosis, and not the desire of either the patient or their substitute decision-makers, family members or others to have the treatment continued. She concluded that if the court was satisfied, on the basis of the evidence, that it was futile to continue the treatment, then the court could make a declaration authorising the withdrawal of the treatment and that was the end of the matter.(102)

It is suggested that the 2009 case Hunter and New England Area Health Service v A has clarified the matter at least in relation to those who have made advance directives in New South Wales and those who have made advance directives under the common law elsewhere in Australia.(103) If an advance directive is made by a capable adult, and is clear and unambiguous, and extends to the situation at hand, it must be respected and given effect to.(104)

In 2010 Kourakis J of the Supreme Court of South Australia dealt with a case in which J was a resident in a high care unit of a residential aged care unit run by H Ltd. J, who was 74 when the case was decided, contracted polio as a child. She overcame that condition and went on to train and work as a teacher. She married and had a daughter and a son. However, she suffered from post-polio syndrome and Type 1 diabetes for which she regularly took insulin. Her situation in 2010 was that, without regular doses of insulin, she would lapse into a diabetic coma. Her health had deteriorated greatly in recent years and by 2010 she had no use of her right sided limbs. She also using her left limbs painful, and their movement was extremely limited. She spent all her waking hours in a wheelchair. When in bed she was unable to move or change position. There was no prospect of any improvement in her condition. J required assistance for all of her basic toileting and hygiene needs.(105)

In January 2010, J wrote to H Ltd advising it that she intended to end her life by ceasing to take any food, water and insulin. She wrote of a despair which she could no longer endure. In March 2010 J made an anticipatory direction under the legislation then in force in South Australia. As Kourakis J noted, that anticipatory direction had statutory force if ever J were in the terminal phase of a terminal illness or in “a persistent vegetative state”. The anticipatory direction instructed medical practitioners not to provide hydration and nutrition to J and requested that she be given only palliative care even though that care may shorten her life.(106)

After a consideration of a number of technical issues, Kourakis J decided that he was able to deal with this matter because it was part of the jurisdiction the Supreme Court of South Australia had inherited from the English courts.(107)

After considering the case law, Kourakis J held that there was no general common law duty on providers of high care residential services to provide sustenance to a resident who refused it.(108)

He followed the view of McDougall J of the Supreme Court of New South Wales that it was in general clear that, whenever there is a conflict between a capable adult's exercise of the right of self-determination and the State's interest in preserving life, the right of the individual must prevail.(109)

However, Kourakis J noted that the right of personal autonomy and self-determination was subject to some limitations and referred to the special case where the right of an unborn child might conflict with the right of self-determination of his or her mother.(110) Mc Dougall J had earlier raised the possibility of the right of personal autonomy and self-determination being set aside in a situation where the State took drastic action to deal with a widespread and dangerous threat to the health of its citizens at large.(111)

Kourakis J did not accept the argument that self-starvation was suicide; and set out his reasons for that opinion.(112) He also noted that it was generally accepted as a matter of community standards, and in law, that a competent adult was not under a duty to take life sustaining medication and that a refusal to do so was therefore not suicide.(113) He went on to hold that the refusal of sustenance and medication is not suicide within the common law meaning of that term.(114)

Kourakis also took the view that respecting a person’s right to personal autonomy recognised by the law could not be treated as an offence of aiding, abetting or counselling another to commit suicide.(115) He was also of the view that the failure to provide sustenance would constitute an offence … only where there is a duty to provide it. In his view, if J were to give a direction not to provide sustenance to her, H Ltd would have a lawful excuse not to provide her with it. This lawful excuse was not founded in J’s consent to the harm, but because H Ltd would have no duty to provide sustenance where J had directed it not to do so.(116)

Kourakis J made a series of declarations and orders. The main ones were to the effect that if J directed H Ltd to cease to provide and administer hydration, nutrition and insulin to her, H Ltd:

1. was under no duty and had no lawful justification to feed or provide nutrition to J even if there were likely to be consequences to her life or health;
2. was under no duty, and had no lawful justification to act to hydrate J, except for such incidental hydration as may be indicated in connection with oral hygiene or the use of mouth swabs to palliate pain and discomfort, even if there were likely to be consequences to her life or health;
3. was under no duty, and had no lawful justification, to act to administer insulin, even if there were likely to be consequences to J’s life or health.(117)

JS had been a quadriplegic since he was 7. In 2014, he was 27 and receiving a variety of medical services from a hospital, including what may be generally described as life sustaining treatment that included artificial ventilation. The evidence was that in absence of that treatment, JS would almost certainly die. The evidence also showed that his health was slowly deteriorating.

JS decided that he no longer wanted to receive that life sustaining treatment and expressed a wish that it cease on his 28^th birthday. He had provided a signed request to that effect. The hospital filed a summons in the New South Wales Supreme Court seeking declarations first to the effect that the responsible medical practitioners may lawfully discontinue all life sustaining treatment and medical support measures for JS including by withdrawing ventilation; and second a declaration that was not granted.(118)

The evidence established that for at least a year, JS had been discussing openly with some family members and medical staff the possibility of withdrawal of life sustaining treatment and in particular the mechanical ventilation. In the light of the evidence, Darke J concluded that JS had the capacity to make a decision to refuse the continuation of the mechanical ventilation, and that his decision in that regard was freely given and based on adequate information.(119)

Because of those conclusions about JS' capacity and the validity of his decision, Darke J was satisfied that no provisions of the Crimes Act 1900 (NSW) could have any application; particularly those concerning aiding and abetting the suicide or attempted suicide of another person. He also quoted Basten JA of the New South Wales Court of Appeal:

The legal concept of suicide, being the intentional taking of one's own life, is not engaged in a case where medical assistance is refused, even in the knowledge of certain death.(120)

Darke J declared that the medical practitioners and staff of the hospital with responsibility for the care of JS would be acting lawfully if they acted in accordance with his request that he be disconnected from the mechanical ventilation then in place, provided that such request was not withdrawn or modified by JS.(121)

These cases show the recent development of the common law in relation to the lawfulness of the withdrawal of life sustaining treatment in appropriate circumstances, and particularly at the request of a patient with the capacity to make that decision and request; It is clear that the competent refusal of life sustaining treatment in such circumstances does not represent suicide, but that in that in the current absence of euthanasia legislation, killing a person, even at their request, even at the end of life and regardless of the sympathetic nature of the circumstances, remains a form of homicide in Australia, usually either murder or manslaughter.(122)

14.3.1.1 Treating people at the end if their lives – the common law and appropriate practice – a summary

As has been seen elsewhere in this book, health care planning is being encouraged as a matter of policy; and in South Australia and the Northern Territory as a matter of legislative reform.(123) As part of that policy, people are being encouraged to make advance directives or to at least express their views about the medical care and treatment they wish to receive when their level of functioning is declining and they need life-sustaining medical technology, such as ventilators, and other interventions by health professionals, such as cardio-pulmonary resuscitation, to keep them alive.

It is also now appreciated that an essential element of health care planning and dealing with the care and treatment of an incapable person at the end of their life is to involve their substitute decision-makers, family members and significant others in the decision-making processes about that treatment, and to proceed through informed, consensus decision-making wherever possible. However, where consensus decision-making fails:

1. The incapable person’s treating doctors may withhold or withdraw treatment where they consider that the commencement or continuation of that treatment would be futile and not in the incapable person’s best interests.
2. Neither the incapable person, through an advance directive, nor their substitute decision-makers, family members or significant others can require such treatment to be given.
3. If the incapable person’s substitute decision-makers, family members or significant others want that treatment to be given, they must obtain an order to that effect from the relevant Supreme Court.

For a good summary of the relevant common law in England, see N, Re [2015] EWCOP 76 and O, Re (Withdrawal of medical treatment) [2016] EXCOP.24, [17]-[18].

14.4 The operation of the common law in some of the States and the interaction between it and the statute law

14.4.1 New South Wales

As has already been noted in 14.3.1 above, advance directives that are clear and nambiguous, and extend to the situation at hand must be respected and given effect to in New South Wales. In circumstances in which a person who is now incapable of making health related decisions for themselves and has not made such an advance directive, the Supreme Court may exercise its parens patriae jurisdiction to deal with disputes about end-of-life decision-making in New South Wales. However, there are other important approaches to this difficult matter in place. In 2005, the former NSW Department of Health (now NSW Ministry of Health) issued a set of guidelines for end-of-life care and decision-making which set out a process for reaching end-of-life decisions. (124) This was followed in 2013, by the Action Plan 2013-2018 for Advance Planning for Quality Care at End of Life. (125) While these guidelines promote advance planning where patients are able to determine their own decisions for end-of-life care, they also address the situation where patients lose decision-making capacity before they have expressed wishes about life sustaining treatment. The guidelines proceed on the basis that, in those situations, the treating team, the multidisciplinary team of health professionals involved in the patient’s management and care, together with the family need to plan care that takes account of the patient’s best interest, reflects their wishes and values and avoids both over-treatment and under-treatment. The guidelines promote a consensus-building approach. They also note that dying patients are cared for in many settings including intensive care units, hospital wards, hospice facilities, aged care facilities and at home.

The guidelines are based on a number of principles which include the following:

1. A primary goal of medical care is the preservation of life, but that when life cannot be preserved, the goal is to provide comfort and dignity to the dying person, and to support others in doing so.
2. All those receiving healthcare have a right to be informed about their condition and their treatment options. They have a right to receive or refuse life-prolonging treatment. Discussions about end of life need to start early. Caregivers have an ethical and legal obligation to acknowledge and honour these stated choices and preferences.
3. End-of-life care should intend to provide the best possible treatment for an individual at that time. If the goals of care shift to accommodate primarily comfort and dignity, then withholding or withdrawal of life-sustaining medical interventions may be permissible in the best interests of the dying patient.
4. Families and healthcare professionals have an obligation to work together to make compassionate decisions for patients who lack decision-making capacity, taking account of previously expressed wishes of the patient where these are known.(126).

The guidelines encourage planning in advance through the making of advance directives. They note that decision-making capacity is often lost as serious illness or death approaches. Consequently, it is more likely that the appropriate decisions about end-of-life care will be made in a more timely manner if those close to the patient understand the patient’s wishes in advance. If an advance directive has been made, or at least discussion with the patient as to their wishes has taken place, their preferences and values can used to inform decision-making as circumstances change during the time leading to the patient’s death.

The guidelines note that, in NSW, people can plan in advance for end-of-life care by:

1. Developing an advance care plan in conjunction with their health care professionals while being treated in a hospital, aged care facility or other place of treatment or care.
2. Discussing their preferences for life-sustaining treatment with their family before they are acutely ill.
3. Formally appointing an enduring guardian giving them lawful directions about the treatment they wished to receive at the end of life.(127)
4. Writing an advance care directive.

The guidelines point out that the critical aspect of effective advance care planning is discussion between the patient and those close to them while the patient still has decision-making capacity.(128)

The guidelines note that planning end-of-life care is a process that has as its elements, assessment, disclosure, discussion and consensus building with the patient or their family and the treatment team. This process can take place over a short period, such as hours, where the patient suddenly or unexpectedly deteriorates, but also it can extend over weeks or months, but ideally it begins early and continues throughout the management of chronic life-limiting illness.(129) The guidelines discuss assessment and the note that disclosure involves the provision of honest information in non-technical language so that the patient and their family may participate meaningfully in decisions about end-of-life care. Any uncertainty about the prognosis or the likely response to treatment should be communicated to the patient and their family. The patient and their family should be engaged in open communication about possible outcomes early in treatment, especially where the patient is seriously or critically ill, in order to prevent unrealistic expectations about what can be achieved with treatment. Early, honest and regular communication can also help create the trust needed for shared decision-making and to defuse tension.

Discussions with the patient and their family about treatment limitation should, if possible, occur in stages over a period of time and, preferably, while the patient can still determine the appropriateness of treatment or its cessation. The treating team may wish to take the opportunity to initiate or revisit discussion about end-of-life care if the patient is hospitalised with severe, progressive illness or has had repeated recent admissions or where there have been inquiries from the patient or their family about palliative or hospice care or where the patient has expressed a wish to die.(130)

The guidelines acknowledge that sometimes there will be disagreements between the treating team and the patient and their family about the care and treatment that should be provided. Indeed, the 2013-2018 Action Plan for Advance Planning for Quality Care at End of Life was informed by the NSW Health Conflict Resolution in End of Life Settings Project 2010, to which we refer throughout this Chapter.(131) The guidelines suggest that a number of approaches are available to resolve these disagreements. These include where it is possible, having further discussions with the family and giving them time to come to terms with the impending death of the patient. Offering a second opinion may be appropriate if the family members have anxieties or uncertainties about the diagnosis or prognosis. A time limited trial of treatment, provided the trial is in the patient’s best interests, may help clarify uncertainty or resolve disagreement about prognosis of the patient. Involving a third party may assist in clarifying and addressing the concerns of the patient or family members, or in finding agreement where an impasse has occurred between the family and the treating team.

If none of these steps resolve the situation, the practicality of transferring the care of the patient to another institution or another suitable treating clinician within the same institution may have to be investigated with those involved.

The final two suggestions for dealing with disagreements involve going to the Supreme Court or the Guardianship Division of NCAT. The powers of the Supreme Court have already been considered, but the role of NCAT, persons responsible and guardians, whether an enduring guardian appointed by the patient or by NCAT or the Supreme Court, if it chooses to exercise latent jurisdiction, in relation decision-making about medical treatment at the end of life must now be considered.

14.4.1.1 Substitute decision-making about medical treatment for a person incapable of making decisions about their own treatment at the end of their life

While the consensus approach set out in the Guidelines is the appropriate way to deal with the medical treatment and care of an incapable person at the end of their life, it is important to know who is the incapable person’s substitute decision-maker, what their role is, and how that relates to the work of the incapable person’s treating doctors at this time of the person’s life.

The legislative scheme for substitute decision-making in relation to the medical (and dental) treatment proposed for people unable to give a valid consent to medical treatment is found in Part 5 of the Guardianship Act 1987 (NSW). Although it was developed to apply generally for those unable to consent to medical (and dental) treatment , it continues to be relevant in relation to medical treatment at the end of life; but there are other factors which we will deal with, along with the legislative scheme, in the paragraphs below. It should be noted that the operation of Part 5 of the Guardianship Act 1987 (NSW) is discussed in detail in Chapter 12. 4. 5 and 12. 4. 6.

Who is the substitute decision-maker, and the nature and extent of their role depends, to a significant degree, on the factual circumstances of each case. Significant factors are whether or not the person being treated has appointed an enduring guardian or NCAT has appointed guardian for them, or they have made an advance directive or whether they have done none of those things so that their person responsible will be the one to give consent, or refuse consent medical treatment proposed for them by their treating doctor(s). Another key factor is the purpose of the treatment proposed. In setting out the “who’s who” of this matter, it is convenient to start with the situation in which the person being treated at the end of their life has not appointed their own enduring guardian, does not have an NCAT appointed guardian and has not made an advance care directive; but does have a person responsible.(132)

The “person responsible” – their role and its responsibilities
While the person responsible is substitute decision-maker for major and minor medical (and dental) treatment, under the legislative scheme that gives them authority to act, the process is for them to respond to requests for consent to medical treatment made to them by others.(133) They cannot demand treatment; but, as a matter how things might be done "in the real world", they may suggest treatment to treating doctors to consider. The process for consent being provided (or a refusal given) may well take place in a conversation between the treating doctor(s), the person responsible, other family members and relevant and significant others. The treating doctor has to explain the proposed treatment, its benefits and disadvantages, alternative treatments, if any.(134) When dealing with requests for consent, persons responsible must have regard to the views of the person in making their decision in relation to the request.(135) They must also have regard to the objects of the objects of Part 5 of the Act. Object (b) of the _Act is to ensure that any medical treatment is carried out for the purpose of promoting and maintaining health and well-being of the person to be treated.(136) As persons responsible are exercising functions under the Act, they must observe the principles set out in s. 4 of the _Act, the primary one being 4(a) which requires them to give paramount consideration to the welfare and interests of the person they are person responsible for. (The person/patient will be a person with a disability, possibly only temporarily, by operation of the Act)

If the person has made an advance care directive that clearly applies to the clinical circumstances that exist, and the advance directive is current, the advance directive is binding on the person responsible and the treating doctor.(137)

Enduring guardian appointed by the person to be treated
If the person to be treated has appointed their own enduring guardian, in circumstances in which the person to be treated cannot give a valid consent to treatment proposed for them, the appointment will have effect (be in operation) and the enduring guardian will automatically have person responsible responsibilities as well as the health care function, unless the maker of their appointment as enduring guardian has limited or excluded those functions in the instrument (document) appointing them.(138)Because enduring guardians are exercising functions under the _Act, they too must observe the principles set out in s. 4 of the Act, as well as meet the requirements of ss. 32(b) and 40(30(c).

Again, if the person has made an advance care directive that clearly applies to the clinical circumstances that exist, and the advance directive is current, the advance directive is binding on the person responsible and the treating doctor.(139)

Guardian appointed in a guardianship order made by NCAT
NCAT appointed guardians usually have the medical and dental consent and the health care functions included in the Tribunal's orders appointing them as guardians; but not always. Most guardianship orders are limited orders, which must specify the functions that the guardians have.(140) NCAT appointed guardians have the same obligation to observe principles in and to meet the requirements of the _Act as do enduring guardians.

Again, if the person has made an advance care directive that clearly applies to the clinical circumstances that exist, and the advance directive is current, the advance directive is binding on the person responsible and the treating doctor.(141)

While what has been set out above is the current situation in New South Wales, the situation has not always been clear. On 2 February 1998 the provisions of the Guardianship Amendment Act 1997 (NSW) providing the legal machinery by which adults could appoint their own (enduring) guardians in New South Wales came into force. Since that date, enduring guardians were vested with the function of deciding, from the time their appointment came into effect, what health care the appointor was to receive. This was because, from that time on, all appointed enduring guardians have had that and certain other functions, including giving consent to the carrying out of medical treatment on the appointor, unless the person appointing them limited or excluded that function from the scope of their authority as enduring guardian in their appointment as enduring guardian.(142)

Another issue arose too, namely could an appointed guardian or an enduring guardian with the health care and medical and dental consent functions consent to the withdrawal of life sustaining medical treatment when a person was dying? In a 2006 case reviewing a decision of the Public Guardian, the General Division of the then NSW Administrative Decisions Tribunal took the view that a guardian could not make a decision to withdraw life sustaining medical treatment because this was not a decision carried out for the purpose of promoting and maintaining the health and well-being of a person. Consequently while the Public Guardian may consent to treatment which will prolong the life of a person, there was no power to consent to the withdrawal of treatment that will result in a person’s death.(143)

In 2007 the then Guardianship Tribunal concluded that a general health care function was not sufficient authority to allow a guardian to make end of life health care decisions, including advance care planning. However, the Tribunal considered that it was able to give a guardian an end of life health care function, if it was satisfied that the incapable person was in an 'end of life' situation.(144)The Tribunal stated that the objects of the medical and dental treatment part of the Act had to be considered, see s.32(b). It noted that consent to proposed treatment was only appropriate if the purpose of the treatment was to promote and maintain the patient’s health and well-being. However, it raised the question could the non-provision of treatment at the end of life promote and maintain health and well-being?(145)The Tribunal answered its own question by stating that the non-provision of treatment for a person who is dying from an underlying medical condition is a very different situation and although in these circumstances lack of treatment may bring forward the person’s time of death, it is not lack of treatment per se which causes that death.(146) Additionally, the Tribunal noted that health and well-being should not be given a rigid or inflexible meaning, and that health and well-being at the end of life will involve very different considerations to the promotion of health and well-being for a person with a curable condition.(147)

The Tribunal went on to note that in many decisions the courts had recognised that in circumstances where treatment was futile, burdensome and intrusive, treatment limitation can be consistent with a person’s best interests. It pointed out that not only in Australia, the United Kingdom and the United States, but also in Ireland, New Zealand, Canada and other jurisdictions the courts have acknowledged that considerations of a person’s welfare and best interests can justify treatment limitation at the end of life.(148)In the next case we refer to O’Connor DCJ referred to the same cases.(149)

The 2006 and 2007 cases involved consideration of the whether enduring guardians and Tribunal appointed guardians with health care and medical and dental treatment consent functions could, under Part 5 of the Guardianship Act 1987 (NSW), consent to the withdrawal of medical treatment in circumstances in which the effect of the withdrawal of that treatment was likely to bring forward the death of the person being treated.

In 2008 in a case before the President of the then NSW Administrative Decisions Tribunal, O’Connor DCJ the question was whether the Public Guardian, as an appointed guardian, with health care and medical and dental consent functions had the power to approve an advance care plan or palliative care plan for a person under guardianship that permits life-sustaining treatment to be withdrawn from that person.(150)

O’Connor DCJ noted the submission of the Public Guardian that Part 5 of the Act dealing with medical and dental treatment was not relevant to what he had to decide. This was because the substitute consent to medical and dental treatment regime set out in Part 5 was concerned only with the performance of medical (or dental) procedures which involved proactive intrusions into the bodily integrity of the patient. It was not concerned with the making of choices not to give treatment or to cease treatment. Those matters were to be addressed by reference to the general authority vested in the guardian by the guardianship order and the law under which those orders are made. There is no need to address them, in addition, by reference to Part 5.(151)

O’Connor DCJ noted that no attempt had been made in the Act to define the ‘functions of a guardian’; and that those words should be given a breadth of interpretation consistent with the general (common) law’s historical understanding of the scope and role of the guardian. The object of guardianship was to enable the making of decisions that the person the subject of a guardianship order would have been able to make had they had legal capacity to do so.(152)

He went on to note that, in relation to unconscious or incompetent patients, the duties imposed on medical practitioners to provide treatment (including life-sustaining treatment) rested on consideration of what was in the patient’s best interests for the purpose of preservation of life. However, the [common] law recognised that clinical judgments were involved, and that there was no need to continue treatments that were therapeutically ineffective, or were extraordinary, excessively burdensome, intrusive or futile. The [common] law did not assume that a patient’s best interests were served by extending the patient’s life by whatever means were available and for as long as possible.(153)

O’Connor J went on to point out that it was now established that it was a permissible exercise of the ‘parens patriae’ jurisdiction, which is part of the inherent jurisdiction of the Supreme Courts of the Australian States and Territories, to authorise care choices which may extend to the withdrawal of treatment under certain conditions.(154) This led him to comment:

It would, in my view, be a strange outcome if the order-making powers of the Guardianship Tribunal were to be read down, as compared to the powers available to the Supreme Court in the protective jurisdiction, so as to prevent guardians as substitute decision makers to be involved in the making of care decisions that have elements that involve the cessation of medical treatment. The Supreme Court’s inherent protective jurisdiction and the Guardianship Tribunal’s statutory jurisdiction are both seeking to serve the same end.(155)

His consideration of the both the common law and the legislation led O’Connor DCJ to the view that there was no obstacle in the Act preventing a guardian from making health care decisions consistent with the principles that had been developed by the common law. In his view the current common law recognised that a guardian’s functions could properly extend to the making of decisions in connection with health care that include decisions to withdraw life-sustaining treatment. He went on to point out that the fundamental consideration was what was in the best interests of the person in the circumstances they were in. The judgment about what was in the person’s best interests needed to have regard to whatever was known about the likely wishes of the person, reasonable medical opinion as to what was appropriate, and the views of the family. (He used the term ‘family’ in a “generous sense to include best friends and the like”.)(156)

Because of the nature of the application before him, O’Connor DCJ did not consider the question of the impact of the person’s advance directive in such a situation As we have noted already twice in this section, if the person has made an advance care directive that clearly applies to the clinical circumstances that exist, and the advance directive is current, the advance directive is binding on the person responsible and the treating doctor.(157)

CD v EF [2018] NSWSC 848, referred to in Chapter 6.3.1, was case of a dispute between two daughters of AB, an elderly woman with severe dementia but not recognised as actively dying, over her accommodation and whether the Public Guardian should be her committee (guardian). Slattery J noted that AB did not have an advance care plan and indicated that it would be "highly desirable that both [siblings] ...agree upon this issue" [at 90]. As a result, in response to Slattery J’s request and during the course of the hearing, an advance care plan was agreed upon and produced as an Exhibit by the daughters.

What is the appropriate treatment and care of a person at the end of their life is constantly changing. Sometimes a particular treatment can be appropriate for weeks or even months. Sometimes the need to change treatments, or at least to reconsider what is the most appropriate form of treatment occurs over a short period, even hours, where the person suddenly or unexpectedly deteriorates and more active treatment can no longer be said to be promoting or even maintaining the incapable person’s health and well-being.

As previously discussed, it is clear from both clinical practice and the decisions of the courts that there is a distinction between promoting and maintaining health and well-being and delaying death with active interventions. This point has been made in the decided cases. As already noted, the Supreme Court of New South Wales has pointed out the distinction between ordinary reasonable and appropriate medical treatment, sustenance and support as opposed to that which is extra-ordinary, excessively burdensome, intrusive or futile.(158)

As noted earlier in this chapter, numerous studies have shown that PEG feeding tubes are seldom effective in minimizing suffering, improving functional status or extending life in terminal illness. While PEG tubes can play a role in promoting and maintaining health and well-being, there is also evidence to show that there are situations in which treating an incapable person by commencing to provide them with nutrition and hydration through a PEG tube is burdensome and inconsistent with good clinical practice.(159) At other times continuing with such treatment is inconsistent with good clinical practice.(160)

Nevertheless, it is now clear that the health care function is adequate to support decisions by guardians (both self-appointed Enduring Guardians and Tribunal-appointed Guardians) relating to the withdrawal of medical treatment provided that guardians made such decisions consistently with the principles set out in the legislation and the case law.(161) Consequently, the Guardianship Tribunal (and now NCAT) occasionally appoints guardians with the function of making end of life health care decisions, including advance care planning decisions.(162)

The cases below are examples of the range of issues that can arise when considering who can or what body can give consent to medical treatment or the withdrawal of medical treatment when a person’s life is coming to an end, or will probably come to an end if particular medical treatment is not consented to. The range of issues is increased by, and complicated by, such matters as who is the substitute decision-maker, has the person made an advance directive that is relevant, has the person expressed views about what they wanted done or not done when certain circumstances arose, and they have now arisen? Below are some examples of how the tribunal with guardianship jurisdiction has dealt with those matters in the past.

NCAT is occasionally called upon to give consent to the amputation of a gangrenous leg of a person incapable of giving a valid consent to their own treatment, but who is objecting to the treatment. Usually the choice is between the amputation and its risks and consequences and a slow and painful death. NCAT usually gives consent in these circumstances, overriding the objection of the incapable person, unless death is imminent and the amputation unlikely to promote the health and well-being of the incapable person.(163)

Nevertheless, NCAT and its predecessor the Guardianship Tribunal have always operated on the basis that both they, and any guardians appointed by them, can make medical decisions according to the objects and other provisions of Part 5 and not to prolong life no matter what. In 1994 the Tribunal noted that it did “not expect heroic efforts to prolong life in all circumstances” and that it recognised that death could be preceded by a dying process and that people should be allowed to die with dignity.(164)

In that case the mother of a young woman with a severe intellectual disability was appointed her guardian with a special condition on her medical consent function of ensuring that the level of nutrition provided to her daughter was as determined by a specialist doctor.(165)

In 1996 the tribunal appointed a daughter, who was a nurse, as guardian to where there were differences in view between an incapable person’s family and her treating doctors as to what was the appropriate treatment for her. The Guardianship Board (as the Guardianship Tribunal was then still known) noted that the nurse daughter was appointed guardian because she:

[W]as able to give an informed view as to the treatments that would be necessary for her mother taking into account both the medical and the other considerations of promoting her mother’s well-being and not providing treatments which could be considered burdensome. The Board therefore considers that s 32 … is clearly to ensure that a guardian appointed acts in accordance with the objects of [Part 5].(166)

The Tribunal has also appointed the Public Guardian as guardian for a person clearly at the end of their life where there is strong disputation in the family as to the treatment the elderly incapable person should receive.(167) MB was a 74 year old woman in hospital in a “persistent vegetative state” as a result of a devastating brain stem stroke. The medical evidence was that it was most unlikely that she would ever recover her capacities. Three of her adult children and her brother wanted her treated conservatively while two of her adult sons wanted aggressive medical treatment; one of them wanted this treatment indefinitely. The Tribunal accepted that MB had expressed “a solemn view” that she did not want to be maintained by life support systems were she in a state of extreme dependency.(168) The Tribunal rejected submissions that the provision of palliative care was tantamount to initiating or hastening MB’s death and noted that:

[P]alliative care is an appropriate treatment option for people who are terminally ill and people in a situation such as [MB] where there is almost no prospect of regaining consciousness or significant quality of life.(169)

The Tribunal appointed the Public Guardian because MB’s children were unlikely to be able to agree on an appropriate course of treatment for their mother, but in circumstances in which palliative rather than life-prolonging treatment may be consented to by the Public Guardian, after consideration of the views of MB’s treating doctors and those of her family members.(170)

In a 2017 case in which a dying man’s wife felt that her husband could recover including by going overseas for treatment, NCAT appointed the Public Guardian as the man’s guardian with clear authority both to consent to active treatment and to make broader health care decisions and decisions about the man’s accommodation. This was done to ensure that the man’s wife could not make medical treatment decisions about him. The context was that the man was being provided with palliative care. He had indicated that he wished to die and knew he was receiving palliative care, which was the treatment recommended by his treating doctor. The man’s daughter and son knew what their father wanted and agreed with his treating doctor. In its reasons for decision the panel of NCAT hearing the case referred to the broad discretion they had; “to make a guardianship order” and cited IF v IG & Others [2004] NSWADTAP 3.(171)

Consistent with the developments in the common law, the Tribunal has refused to intervene to override a decision of a wife, as person responsible, not to reinstate nutrition for her 55 year old husband after he suffered severe hypoxic brain damage as a result of a heart attack.(172) NA had been receiving hydration, except for one week, and no nutrition for the 10 weeks following his heart attack. The application to the Tribunal was for its consent to the reintroduction of nutrition through either a naso-gastric or PEG tube overriding his wife’s refusal to agree to that course of treatment.

NA was not unconscious, but his level of consciousness was very impaired and had not changed. He could do nothing for himself. His prognosis for recovery was very guarded or very poor and he was being managed as a palliative care patient. His wife, sister-in-law and adult children all gave evidence of NA stating, on different occasions to each of them in different ways, that he did not wish to live if he suffered serious brain injury. The Tribunal refused to give consent to the proposed treatment, leaving NA’s wife in her role as person responsible. The Tribunal did this knowing that NA would not be resuscitated if he had another heart attack, nor would he be treated with antibiotics if he developed pneumonia or other infections, but rather conservatively to keep him comfortable and pain-free.

In another case in 2002, the Tribunal was asked to make guardianship and financial management orders for NB and to give consent to medical treatment on his behalf.(173) In July 1995 he was diagnosed as having a large brain stem arterial venous malformation. After operations to excise this malformation and other procedures by November 1996, NB’s diagnosis was that of, “locked-in syndrome post repair of arterio-venous malformation and haemorrhage of mid brain”. By 2002 he had needed full assistance with all activities of daily living for some time. He could communicate only by indicating “yes” or “no” or by spelling out words on as very slowly on a board. He was fed through a PEG tube, but this fell out in April 2002 and NB refused to have it reinserted.

This led to the applications for a guardianship order and consent to medical treatment, as well as for a financial management order. The Tribunal made the financial management order because, while NB could express views, he was totally reliant on others to manage his financial affairs for him. However, the Tribunal made neither the guardianship order nor the medical consent order sought. This was because it was satisfied that NB had not lost the capacity to make and communicate personal, including medical treatment, decisions about himself. NB understood the consequences for him of the PEG tube not being reinserted.

As already noted, another obligation imposed by Part 5 on substitute decision-makers, whether they be persons responsible or NCAT, is to have regard to the views of the incapable person, if they have any.(174) In the case NCAT, it must also consider the views of the person and persons responsible.(175)

Returning again to the Hunter and New England Area Health Service Case the case in which McDougall J of the NSW Supreme Court noted that:

A person may make an “advance care directive”: a statement that the person does not wish to receive medical treatment, or medical treatment of specified kinds. If an advance care directive is made by a capable adult, and is clear and unambiguous, and extends to the situation at hand, it must be respected. It would be a battery to administer medical treatment to the person of a kind prohibited by the advance care directive.(176)

We suggest that it is now clear that both persons responsible and NCAT would be bound by such an advance directive and would have to give effect to its terms. In the absence of such an advance directive we suggest that while persons responsible and NCAT must have regard to the views of the incapable person, they are not bound by them and have a discretion to take other matters into account when determining what is the most appropriate treatment for promoting and maintaining the health and well-being of the incapable person.(177) The religious views of the incapable person, for example, can be relevant in determining what is the most appropriate treatment for them to receive at a particular time in order to promote and maintain their health and well-being.

It is suggested that the cases referred to above apply to the interpretation of the relevant Tasmanian provisions.

14.4.2 Victoria

While Morris J was in no doubt that the Supreme Court of Victoria has parens patriae jurisdiction, he held that it does not apply in the areas covered by Victoria’s guardianship legislation and the Medical Treatment Act 1988 (Vic). In Gardner re BWV he said:

Although the parens patriae jurisdiction of the Court is of considerable historical interest, I doubt if it should play any current role in the day to day administration of guardianship matters. Victoria has comprehensive laws in relation to guardianship and administration matters. These laws have established the statutory office of Public Advocate, with roles and responsibilities somewhat akin to those which might once have been adopted by the Court. A wide jurisdiction is also vested in the Victorian Civil and Administrative Tribunal to resolve disputes concerning guardianship matters and to consider applications where there is some perceived threat to the integrity of the guardianship system. The Medical Treatment Act sets out parliament's intent in relation to the procedure whereby a person may refuse medical treatment; and, further, the procedure whereby an agent may make a decision about medical treatment on behalf of an incompetent person.

In my opinion, the Court would be failing to give effect to the will of parliament if it refused to make the declarations sought by the Public Advocate in this case by reference to some discretionary consideration. The fact that a type of reserve power exists provides no logical justification for bypassing the Guardianship and Administration Act and the Medical Treatment Act.(178)

In Morris J’s view the Victorian parliament has set in place a statutory scheme, namely the Medical Treatment Act 1988 (Vic), to deal with the withholding or withdrawal of a life-sustaining treatment from a now incompetent person. Under that Act, an agent appointed under an enduring power of attorney (medical treatment) by a now incapable person or a guardian appointed for them by the Victorian Civil and Administrative Tribunal (VCAT) could refuse either particular medical treatment or all medical treatment for them. However, the agent or guardian may do this only by way of a form of substituted judgment. First the treatment must be such that would cause unreasonable distress to the patient and second there has to be reasonable grounds for believing that, if competent, the patient would, after giving serious consideration to their health and well-being, consider the treatment unwarranted. The agent or guardian must then make a certificate to that effect.(179)

Significantly, but also consistently with decisions of courts in England, Ireland and the US, Morris J held that the provision of nutrition and hydration via a PEG tube constitutes medical treatment within the meaning of the Medical Treatment Act 1988 (Vic).(180) He also held that refusal of further nutrition and hydration, administered via a PEG tube, constitutes refusal of medical treatment, rather than refusal of palliative care under the Act.(181) Palliative care includes “reasonable provision of food and water”, which Morris J interpreted as reference to “ordinary feeding by mouth”, carried out by the patient or non-medical personnel. Morris J noted that the purpose of the legislation was to ensure provision of food and water if desired, but not to force the consumption of food and water onto dying patients.(182)

The decision by Morris J that the provision of nutrition and hydration via a PEG tube constitutes medical treatment is consistent with the definition of medical treatment in the Guardianship Act 1987 (NSW) and would appear to apply to the Guardianship and Management of Property Act 1991 (ACT).(183)

In 2003, through the use of the Medical Treatment Act 1988 (Vic) and the Guardianship and Administration Act 1986 (Vic), the wife of a man who was unable to communicate and who was receiving nutrition and hydration through a PEG tube and who had no prospect of recovery was appointed his guardian so that she could make a decision to refuse antibiotics in the event of him developing a chest infection.(184) As a result of traffic accident in 1999 when he was 40 and had a wife and young children, Mr RCS became a quadriplegic with substantial cognitive impairment, no ability to communicate, dysphagia and double incontinence. He was receiving nutrition and hydration through a PEG tube. There was no prospect that his condition would improve.

His wife wanted to be appointed as his guardian so that, by applying the Medical Treatment Act 1988 (Vic), she could make a decision to refuse antibiotics in the event of him developing a chest infection. Morris J sitting as President of VCAT was willing to appoint her as her husband’s joint guardian, with her husband’s brother. In appointing them, Morris J noted that:

It is true that if (Mr RCS’s wife and brother) are appointed as guardians they may decide, in accordance with section 5B of the Medical Treatment Act, to refuse medical treatment, with the consequence that Mr RCS dies. But it does not follow that the appointment would not be in Mr RCS’s best interests. The contrary argument is predicated upon the proposition that it is always in a person's best interests to live on. I cannot accept this. Death is an inevitable consequence of life on this earth. When death stares one in the face, or when life is futile, the person concerned, or the trusted agent or guardian of that person, may conclude that it is in the best interests of the person to refuse medical treatment and to allow the person to pass away.(185)

Morris J also noted:

Mr RCS’s wife has given evidence that, prior to Mr RCS's accident, he had generally indicated that if he was in a position such that he was now in he would not want to be kept alive by the application of medical science. Understandably, the details of such discussions are vague. However I have no hesitation in finding that such general discussions did take place and that Mr RCS did make statements to that general effect. This finding is supported by evidence from Mr RCS's brother and also from his mother.

But even if such discussions had not taken place, I am satisfied that the circumstances Mr RCS now finds himself in are such that his guardian could reasonably conclude that if Mr RCS was competent, and after giving serious consideration to his health and well-being, he would consider that certain medical treatment was unwarranted.(186)

In all the States and in the ACT, it often falls to the lot of the Public Guardian (NSW, Tas and Qld) and the Public Advocate (Vic, SA, WA and the ACT) to make decisions about the care and treatment an incapable person should receive at the end of their lives. This responsibility usually arises because they have been appointed the person’s guardian, but the Public Guardian of Queensland can be invested with this responsibility as the ultimate statutory health attorney.(187)

In Victoria, the Public Advocate has been appointed an incapable person’s guardian in circumstances where decisions would have to be made as to whether to continue to provide medical treatment to the person under guardianship. In the 2003 case, Gardner; re BWV, VCAT appointed the Public Advocate as Mrs BWV’s guardian with powers limited to making decisions about her medical treatment.(188)

Mrs BWV, who was then 68, suffered from a progressive and fatal form of dementia. She had neither appeared conscious nor to have had any cortical activity, for approximately three years. She appeared to have no cognitive capacity at all and had no bodily functions, other than those which are reflexive. She received hydration and nutrition through a PEG tube and this kept her alive. She was doubly incontinent and required full nursing care. Although her brain stem of continued to function normally, the damage to her cortex is irreparable. There was no prospect of any recovery, or improvement of any kind in her condition.

The Public Advocate went to the Supreme Court seeking declarations that the provision of nutrition and hydration via a PEG tube constituted "medical treatment" within the meaning of the term in the Medical Treatment Act 1988 (Vic) and that refusal of further nutrition and hydration administered via a PEG tube constituted a refusal of "medical treatment", rather than refusal of "palliative care", within the meaning of the Medical Treatment Act 1988 (Vic).

The evidence of the three medical witnesses who examined Mrs BWV was that the provision of nutrition and hydration via the PEG tube was futile, in that there was no prospect whatever of that treatment improving her condition. Morris J made the findings noted above and granted the declarations.

Another case involved the murder of Mrs Maria Korp. On 13 February 2005, she was admitted to hospital after being found unconscious in the boot of a car. She had been there for four days. Mrs Korp was diagnosed with a severe hypoxic brain injury. She never regained consciousness. In hospital Mrs Korp received artificial nutrition and hydration via a PEG tube. She did not respond to visual stimulation, nor did she blink with visual threat. She showed no detectable response to verbal command and did not turn towards an auditory stimulus. She showed no evidence of a cognitive interaction with others or the environment. Her husband and his lover were charged with a number of serious criminal offences relating to how Mrs Korp acquired her brain injury.

An application was made to VCAT for the Public Advocate to be appointed as her guardian. VCAT received evidence that if the artificial hydration and nutrition were withdrawn, Mrs Korp would die within several weeks. VCAT was satisfied that Mrs Korp was “in a persistent vegetative state” as a consequence of anoxic cerebral injury, which also resulted in widespread cortical and deeper subcortical damage and, in April 2005, appointed the Public Advocate as Mrs Korp’s with powers and duties limited to making decisions concerning accommodation, access by persons and medical treatment.(189)

The Public Advocate then had to decide what to do. Extensive inquiries were made to discover if she had made known her wishes about medical treatment. She had not made her wishes known.

Numerous meetings were held with Mrs Korp’s treating team to examine the medical evidence and explore treatment options. A second opinion from an independent neurologist was obtained. Her treating team advised that it had not been possible to stabilise Mrs Korp’s condition, that she was dying and that further medical treatment other than palliative care was futile and burdensome for her. The Public Advocate decided to have artificial hydration and nutrition withdrawn from Mrs Korp. Her husband was allowed to visit her. The PEG tube was removed and she died nine days later, on 6 August 2005.(190)

As Gillard J pointed out, an inquest into her death was held and the Deputy State Coroner formally found that on 6 August 2005, Mrs Korp died from complications of hypoxic brain injury, and that her death was caused by her husband Joseph William Korp and his lover, Tania Lee-Anne Herman. The coroner also found that Mr Korp took his own life by hanging on 12 August 2005, with prior indication of intent.(191)

14.4.3 Queensland

In Queensland the withholding or withdrawal of life-sustaining measures for incapable adults is the subject of complex statutory arrangements. If a now incapable adult has made an advance health directive, under the Powers of Attorney Act 1998 (Qld), to withhold or withdraw one or more life-sustaining measures, that direction cannot operate unless at least one of the following situations applies:

1. the maker has a terminal illness or condition that is incurable or irreversible and as a result of which, in the opinion of a doctor treating the maker and another doctor, the maker may reasonably be expected to die within 1 year,
2. the maker is in a persistent vegetative state, meaning that they have a condition involving severe and irreversible brain damage which allows some or all of the maker’s vital bodily functions to continue, including, for example, heart beat or breathing,
3. the maker is permanently unconscious, meaning that they have a condition involving brain damage so severe that there is no reasonable prospect of them regaining consciousness,
4. the maker has an illness or injury of such severity that there is no reasonable prospect that they will recover to the extent that their life can be sustained without the continued application of life-sustaining measures;

In addition, if the direction is to withhold or withdraw artificial nutrition or artificial hydration, the commencement or continuation of the treatment would be inconsistent with good medical practice; and the maker had no reasonable prospect of regaining capacity for health matters.(192)

If there is no such advance directive then the decision-making devolves upon whoever is first in the following hierarchy:

1. a guardian appointed by the Queensland Civil and Administrative Tribunal (QCAT) (but only if empowered to make health care decisions),(193)
2. an attorney under an enduring power of attorney,(194)
3. the incapable person’s spouse,
4. the adult person who has care of the incapable person,
5. the adult person who is the a friend or relation but not a paid carer of the incapable person,(195) or,
6. the Public Guardian.(196)

The relevant one of these, namely the first reached in the hierarchy above, may give their consent to the withholding or withdrawal of a life-sustaining measure, but that consent may not operate unless the person’s health provider reasonably considers that the commencement or continuation of the life-sustaining measure would be inconsistent with good medical practice. The person’s health provider must certify in the person’s medical records as to the various things enabling the life-sustaining measure to be withheld or withdrawn.(197)

In addition QCAT has the function of consenting to the withholding or withdrawal of life-sustaining measures for incapable adults if an application is made to it. It may also make declarations, orders or recommendations, or give directions or advice, in relation to certain matters.(198) QCAT may give this consent only after consideration of an array of criteria which it has set out with detailed clarity in a number of its decisions.(199)

While applications have been made to QCAT’s predecessor tribunal, the Queensland Guardianship and Administration Tribunal, for its consent to stop artificial nutrition and hydration or not to commence it in the first place, that Tribunal tried to make it clear that such decisions were ones for the person’s family. In a 2003 decision that Tribunal said:

[T]he Tribunal would like to make it quite clear that these decision as to the withholding and withdrawing of life sustaining measures are decisions which are appropriately made within the realm of the family and it would be of considerable assistance to families and in particular to nursing homes if the Australian Medical Association produced a comprehensive set of Guidelines along the lines of the BMA Guidelines to assist families and health providers to make appropriate decisions in circumstances such as these.(200)

In Re HG the Tribunal consented to the withholding of artificial nutrition and the withdrawing of artificial hydration.(201) In that case HG at 58 had already developed both Wernicke’s encephalopathy and Korsakoff’s psychosis which caused him memory deficits, ataxia, peripheral neuropathy and double incontinence. He then had a brain stem stroke which left him unable to swallow and completely paralysed except for the ability to move his eyes up and down. As he had no one in his life except concerned and involved paid carers, his substitute decision-maker was, as the “default” statutory health attorney, the then Adult Guardian (now Public Guardian). After consultation with HG’s medical team, the Adult Guardian consented to the withdrawal of artificial hydration and the withholding of artificial nutrition. Later the same day, workers who had been involved with HG’s “in home” care for many years requested a review of that decision on the basis that they believed HG could communicate and could make his own decisions about health care. The Adult Guardian consented to the resumption of subcutaneous artificial hydration and lodged an application with the Tribunal.

The Tribunal sought the opinions of three expert medical witnesses. They came to the view that any trial of nutrition would be for the benefit of the carers and not HG. They were also unanimous in their view that it would be inconsistent with good medical practice to commence artificial nutrition for HG and that the current subcutaneous hydration should be withdrawn at some time in the future.(202) Armed with that evidence, the Tribunal had to make its own determination. It set out its opinion of how the test for a life-sustaining measure being inconsistent with good medical practice must be satisfied in Queensland. It said:

Before a decision to withhold or withdraw a life-sustaining measure will be a ‘health matter” for which consent can be given, the commencement or continuation of the measure must be inconsistent with good medical practice. This test will not be satisfied just because the withholding or withdrawal of the measure is consistent with good medical practice. More must be demonstrated. There must be evidence that the provision of the measure is inconsistent with good medical practice. Therefore, if there was evidence that there were two medically and ethically acceptable treatment options, one being the provision of the measure, the test in the legislation is not satisfied and consent could not be given to the withholding or withdrawal of the measure.(203)

The Tribunal was satisfied that the commencement of artificial nutrition and the continuation of artificial hydration would be inconsistent with good medical practice. However, before consenting to the withholding of artificial nutrition and the withdrawing of artificial hydration from HG, as it is obliged by the legislation to do, the Tribunal considered the relevant General Principles and the Health Care Principle set out in the Act.(204) One element of the Health Care Principle was that a guardian, the now Public Guardian or now QCAT should not “exercise power for a health matter” unless it was, in all the circumstances, in the incapable person’s best interests to do so.(205) The Tribunal was of the opinion that determining what was in an incapable person’s best interests included considering:

1. the seriousness of their condition;
2. their prospect of recovery;
3. whether the proposed treatment is of therapeutic value to them;
4. the benefits against the burdens of treatment;
5. the effect of treatment on the incapable person’s dignity; and
6. the views and wishes of the incapable person.(206)

The Tribunal referred to the Bland Case noting that in it the House of Lords had held that the object of medical treatment was to benefit the patient but that if the body of the medical evidence was that the treatment was of no benefit to the patient then the principle of the sanctity of life, which was not absolute, was not violated by ceasing to give treatment which involved invasive manipulation of a person’s body and which conferred no benefit on them.(207) The Tribunal also placed reliance on the British Medical Association Guidelines noting that they state that medical treatment that does not provide a net benefit to a patient beyond mere existence may ethically and legally be withdrawn and the goals of medicine should shift to the palliation of symptoms. Those guidelines also state that it is not an appropriate goal of medicine to prolong life at all costs with no regard to its quality or the burdens of treatment.(208)

The Tribunal gave its consent and recommended that the implementation of its decision be facilitated by the then Adult Guardian as statutory health attorney in consultation with HG’s health providers and those people who were part of his support network.

In 2002, an application was made to QCAT’s predecessor tribunal because of a dispute between family members as to whether a PEG tube should be inserted in Mrs TM in order to provide her with nutrition and hydration.(209) Mrs TM was diagnosed with younger onset Alzheimer ’s disease in 1996. Her care needs were increasing all the time and by late 2001 she was having difficulty swallowing. She was cared for in a nursing home. By the time the matter came to the Tribunal there were two clear sides in the matter. Mrs TM’s five children and her sister did not want a PEG tube inserted in Mrs TM because that treatment was recommended against by some practitioners. Mrs TM’s brother supported PEG feeding suggested by a general practitioner and supported by a nursing home which made the application to the Tribunal.

The Tribunal took evidence on a range of ethical and medical issues, including evidence relating to PEG feeding. In its reasons for decision, the Tribunal referred to a study that indicated feeding people with advanced dementia with a PEG tube, may instead of promoting the comfort of the person, not only fail to prevent suffering but may actually cause it. The Tribunal also referred to another study which showed that tube feeding in patients with dementia may not necessarily have the beneficial outcomes for which the tubes were inserted.(210) The Tribunal also noted the evidence that “dehydration is not an uncomfortable way to die”.(211)

After a consideration of the General Principles and the Health Care Principle, the Tribunal was satisfied that Mrs TM was dying and that the underlying cause of her death would be the pathology that rendered her incapable of eating and drinking in the first place. She would not die because artificial hydration and nutrition had not been supplied to her.(212)

The complex legislation, and the decided cases, relating to the withholding and withdrawal of life-sustaining measures in Queensland have been considered elsewhere.(213)

14.5 Care, treatment and decision-making at the end of life in all the Australian States and Territories

When this ebook was first published, this chapter ended with the heading above and the following paragraph.

As it can be seen from this chapter and earlier chapters, the developing common law and the developing policies and practices relating to health professionals play key roles in how care, treatment and decision-making at the end of life is dealt with in Australia. The interaction between the common law and relevant statute law, where it exists, is also important. Consequently, the common law set out earlier in this chapter, including where it operates with legislation, is relevant to all the States and Territories and applies in all of them except to the extent that its operation is limited by the legislation.

Since then there have been important legislative developments in South Australia and the Northern Territory. As already noted earlier in this chapter, these are the Advance Care Directives Act 2013 (SA) and the subsequent Advance Personal Planning Act (NT). The provisions of both these Acts are designed to ensure that the advance decisions made by the makers of advance care directives in South Australia and advance personal plans in the Northern Territory about how they want to be treated and cared for at the end of life are given effect to the greatest extent possible.

14.5.1 South Australia

However, since late 1995 at least, in South Australia it has been clear that a medical practitioner responsible for the treatment or care of a patient in the terminal phase of a terminal illness, or a person participating in the treatment or care of the patient under the medical practitioner's supervision, incurs no civil or criminal liability by administering medical treatment with the intention of relieving pain or distress, if they do so:

1. with the consent of the patient or the patient's representative; and
2. in good faith and without negligence; and
3. in accordance with proper professional standards of palliative care;

even though an incidental effect of the treatment is to hasten the death of the patient.(214)

Also it is clear in South Australia that a medical practitioner responsible for the treatment or care of a patient in the terminal phase of a terminal illness, or a person participating in the treatment or care of the patient under the medical practitioner's supervision:

1. is under no duty to use, or to continue to use, life sustaining measures in treating the patient if the effect of doing so would be merely to prolong life in a moribund state without any real prospect of recovery or in a persistent vegetative state (whether or not the patient or the patient's representative has requested that such measures be used or continued); and
2. must, if the patient or the patient's representative so directs, withdraw life sustaining measures from the patient.(215)

The Consent to Medical Treatment and Palliative Care Act 1995 (SA) specifically provides that neither the administration of medical treatment for the relief of pain or distress in in this way, nor the non-application or discontinuance of life sustaining measures constitute an intervening cause of death creating civil or criminal liability for the patient’s death.(216) However, the Act makes it clear that it neither authorises the administration of medical treatment for the purpose of causing the death of the person to whom the treatment is administered nor authorises a person to assist the suicide of another person.(217)

With the coming into force on 1 July 2014 of the Advance Care Directives Act 2013 (SA), those who make of advance care directives have been able to include binding provisions in their directive. A binding provision is one that comprises a refusal of particular health care; whether express or implied.(218) Importantly, the Act imposes obligations on health practitioners to give effect to advance care directives. In particular health practitioners:

1. must comply with a relevant binding provision of the advance care directive; and
2. should, as far as is reasonably practicable, comply with a relevant non-binding provision of the advance care directive that relates to health care; and
3. must, as far as is reasonably practicable, seek to avoid any outcome or intervention that the giver of the advance care directive would wish to be avoided (whether such wish is expressed or implied); and
4. must endeavour to provide the health care in a manner that is consistent with the principles set out in the Act.(219)

The principles of the Act relevantly point out that an advance care directive enables a competent adult to make decisions about their future health care and that a person must be allowed to make their own decisions about their health care.(220)

There are limited circumstances in which health practitioners are not bound by binding provisions. These are dealt with in Chapter 13. 5. 3. 6. However, as it is likely to arise in the context of end of life decision-making, despite any provision of an advance care directive to the contrary, an advance care directive does not authorise a substitute decision-maker to refuse:

1. the administration of drugs to relieve pain or distress; or
2. the natural provision of food and liquids by mouth.(221)

As there is room for different interpretations of what is meant by provisions in an advance care directive about refusals of treatment and whether they apply to the current circumstances of the maker of the advance care directive, there are provisions in the Act for resolution of disputes by the Public Guardian and the South Australian Civil and Administrative Tribunal (SACAT). SACAT and the Supreme Court may also conduct appeals and reviews. These matters are set out in some detail in Chapter 13. 5. 3. 8 and 9.

The Supreme Court has jurisdiction under the Act to conduct urgent reviews. On the application of either:

1. a health practitioner responsible (whether solely or with others) for the health care of the giver of an advance care directive; or
2. any person who has, in the opinion of the Court, a proper interest in the exercise of powers by the substitute decision-maker;

the Court may review the decision of a substitute decision-maker appointed under an advance care directive. However, such a review consistently with the policy underlying the Act:

1. is limited to ensuring that the substitute decision-maker's decision is in accordance with the advance care directive and the Act; and importantly
2. cannot be undertaken in respect of a decision to withdraw or withhold health care if the giver of the advance care directive is in the advanced stages of an illness without any real prospect of recovery and the effect of the health care would be merely to prolong the person's life.(222)

This review jurisdiction is dealt with in more detail in Chapter 13. 5. 3. 10. The Advance Care Directives Act 2013 (SA) itself is dealt with in more detail at Chapter 13. 5. 3.

It is important to note that it is only when the giver of the advance care directive has impaired decision-making capacity in respect of a decision relevant to the provision of that health care, including the withholding or withdrawal of the health care, that a health practitioner may provide health care pursuant to a relevant advance consent given in the advance care directive, or by a substitute decision-maker appointed in the advance care directive, or by a guardian appointed by SACAT or by SACAT itself.(223)

To emphasise this point, the Act also provides a substitute decision-maker appointed in the advance care directive may make a decision under that advance care directive only if, at the relevant time, the giver of the advance care directive has impaired decision-making capacity in relation to that decision.(224)

When the giver has decision-making capacity in relation to the relevant decision or decisions, then they make the health care decisions they are able to make.

Even though it is dealt with at Chapter 12.5.8, it is worthwhile repeating here that, just as the treating health practitioners must comply with (an allowable and relevant) binding provision in an advance care directive, a substitute decision-maker appointed in that advance care directive cannot give a consent to treatment inconsistent with that binding provision.

In carrying out their decision making functions under an advance care directive, particularly in making end of life health care decisions , a substitute decision-maker must, as far as is reasonably practicable:

1. give effect to any instructions or directions expressed in the advance care directive; and
2. seek to avoid any outcome or intervention that the person who gave the advance care directive would wish to be avoided (whether such wish is expressed or implied); and
3. obtain, and have regard to, the wishes of the person who gave the advance care directive (whether such wishes are expressed or implied); and
4. endeavour to make the decision in a manner that is consistent with the principles set out in the Act.(225)

Also the substitute decision-maker must make the decision that they reasonably believe the giver of the advance care directive would have made in the circumstances. They must act in good faith and with due diligence.(226)

14.5.2 Northern Territory – Advance Personal Planning Act

Advance personal plans are dealt with in detail in Chapter 13. 5.2. They are also dealt with in relation to substitute consent to health care in Chapter 12.10. Those who make such plans can include in them one, some or all of the following:

1. consent decisions about future health care action they wish to receive in the appropriate circumstances. These are called advance consent decisions;
2. the views, wishes and beliefs of the giver of the advance personal plan as the basis on which they want anyone to act if they make decisions for them. These are called advance care statements. They can include the views, wishes and beliefs of the giver of the advance personal plan as the basis on which they want anyone to act if they make decisions for them about all or any aspect of not only their care and welfare (including health care), but also of their property and financial affairs;
3. appoint one or more persons to make decisions for them if they lose decision-making capacity. These people are known as decision makers. The decisions that the giver of the plan may authorise them to make, in the plan, may extend to making decisions for them about all or any aspect of not only their care and welfare (including health care), but also any aspect of their property and financial affairs.(227)

However, in this chapter we are dealing only with decisions to be made at the end of life. These decisions will usually be about the giver of the plan’s health care, but could occasionally include their care and welfare. Also, it is important to appreciate that these decisions may be made by a substitute for the giver of the plan only when the giver has impaired decision-making capacity for the matter, as defined in the Advance Personal Planning Act (NT).(228)

If the giver of a plan has made an advance consent decision, that decision has effect for all purposes as if it had been made at the time it is proposed to take the health care action and that the giver had full legal capacity and was fully informed about the health care action. Put another way, the advance care decision is to be treated as a current decision made by the giver with decision-making capacity for that decision.

However, the Northern Territory Civil and Administrative Tribunal (NTCAT) may order that the advance consent decision be disregarded; but only if it is satisfied that:

1. there is no reasonable possibility that the adult would have intended the advance consent decision to apply in the circumstances; or
2. taking health care action in reliance on the advance consent decision,
1. would cause the patient unacceptable pain and suffering; or
2. would otherwise be so wholly unreasonable that it is justifiable to override the patient's wishes.(229)

Where NTCAT has not ordered that an advance consent decision can be disregarded, it is unprofessional conduct for a health care provider, who is a registered as a health practitioner of a profession covered by the Health Practitioner Regulation National Law, to take health care action other than in reliance on consent given in accordance with an advance consent decision in the giver’s advance personal plan.(230) However, health practitioners are neither required to nor permitted, under the Act to take unlawful health care action. Nor does the Act permit them to euthanize another person or to assist a person to terminate their own life (assisted suicide).(231)

There are a number of provisions in the Advance Personal Planning Act (NT) however, that protect health care providers from liability if they take health care action in relation to a person whom they reasonably believe has impaired decision-making capacity for the health care action and reasonably believed that there was consent for the health care action either because of an advance consent decision or because a substitute, who was authorised by operation of the Act, such as a decision maker appointed an advance personal plan or NTCAT, had given consent to the health care action.(232) Note that this health care action can be taken even if the effect of doing so is to hasten the death of the adult.(233)

It should be noted that the Advance Personal Planning Act (NT) repealed the Natural Death Act (NT).(234) However when Advance Personal Planning Act (NT) came into force, it provided that an existing direction made under the repealed Natural Death Act (NT) became an advance personal plan that contains an advance consent decision in accordance with its terms.(235) The repealed Act provided that capable adults who desired not to be subjected to medical or surgical measures that would prolong or were intended to prolong life in the event of them suffering from a terminal illness could make a direction in a formal manner.(236)

Notes

1 : White B., Willmott,L., Cartwright, C Parker MH. and Williams G. (2014) Doctors knowledge of the Law on withholding and withdrawing life-sustaining medical treatment Med J Australia 201(4): 229-32.

2 : White B., Willmott,L., Cartwright, C Parker MH. and Williams G. (2014) Doctors knowledge of the Law on withholding and withdrawing life-sustaining medical treatment Med J Australia 201(4): 229-32.

3 : See End of Life Law in Australia https://end-of-life.qut.edu.au/; and the Webinar, End of Life Law for Clinicians (https://www.youtube.com/watch?v=mQbqyH7qo-Y&feature=youtu.be).

4 : Kuhse H, Singer P, Baume P, Clark M, Rickard M. “End-of-life decisions in Australian medical practice” Med J Aust. (1997) 166(4):191-6.

5 : See s. 122.

6 : See for example,,Voluntary Assisted Dying Act 2017 (Vic) and the Voluntary Assisted Dying Bill 2019 (WA).

7 : https://www.racp.edu.au/docs/default-source/advocacy-library/racp-voluntary-assisted-dying-statement-november-2018.pdf?sfvrsn=761d121a_4.

8 : Dunstan, GR (1985) ‘Hard questions in intensive care. A moralist answers questions put to him at a meeting of the Intensive Care Society, Autumn, 1984’, Anaesthesia, 40: 479–82.

9 : Clinical Excellence Commission. 2016. Guidelines for conducting and reporting Mortality & Morbidity / Clinical Review meetings. Sydney: Clinical Excellence Commission.

10 : www.ficm.ac.uk/sites/default/files/ficm_care_end_of_life_0.pdf; Australian and New Zealand Intensive Care Society (2014) ANZICS Statement on Care and Decision-Making at the End of Life for the Critically Ill.(Edition 1.00) Melbourne. https://www.anzics.com.au/wp-content/uploads/2018/08/ANZICS-Statement-on-Care-and-Decision-Making-at-the-End-of-Life-for-the-Critically-Ill.pdf.

11 : Meehan E. Foley T., Kelley MC., et al., (2019) Advance care planning for individuals with chronic obstructive pulmonary disease: a scoping review of the literature. J Pain Symptom Manage. pii: S0885-3924(19)30715-8. doi: 10.1016/j.jpainsymman.2019.12.010. [Epub ahead of print]; Takada Y, Hamatani Y, Kawano Y et al (2019) Development and validation of support tools for advance care planning in patients with chronic heart failure. Int J Palliat Nurs. 25(10):494-502; Mechler K, Liantonio J. (2019) Palliative Care Approach to Chronic Diseases: End Stages of Heart Failure, Chronic Obstructive Pulmonary Disease, Liver Failure, and Renal Failure. Prim Care. 46(3):415-43.

12 : Robards J, Evandrou M, Falkingham J, Vlachantoni A. Mortality at older ages and moves in residential and sheltered housing: evidence from the UK. J Epidemiol Community Health. 2014;68(6):524–529. Theou O, Sluggett JK, Bell JS., et al Frailty, Hospitalization, and Mortality in Residential Aged Care. J Gerontol A Biol Sci Med Sci. 2018 Jul 9;73(8):1090-1096.

13 : Hendriks SA., Smalbrugge M., Deliens L., et al (2017) End-of-life treatment decisions in nursing home residents dying with dementia in the Netherlands International J Geriatric Psychiatry, 32(12):e43-e49.

14 : Hendriks SA., Smalbrugge M.,van Gageldonk-Lafebar AB et al (2017) Pneumonia, Intake problems and survival amongst nursing home residents with variable stages of dementia in the Netherlands: Results from a prospective observational study Alzheimer Disease and Associated Disorders, 31(3):200-208; Markham S, Jessop T, Peisah C. (2019) Death, dying and dementia – a pivotal role for the GP. Medicine Today. 20 (9):10-17; Livingston G, Sommerlad A, Orgeta V, et al. Dementia prevention, intervention, and care. Lancet 2017; 390: 2673-2734).

15 : van Thiel, GJ, van Delden JJ, de Haan K, Huibers AK. “Retrospective study of doctors' end of life decisions" in caring for mentally handicapped people in institutions in The Netherlands”. BMJ. 1997 315(7100):88-91.

16 : Wiese M, Stancliffe RJ, Dew A, Balandin S, Howarth G. 'What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death' J Intellect Disabil Res 2014 Jul;58(7):679-90. See also Wiese M, Dew A, Stancliffe RJ, Howarth G, Balandin S 'If and when?': the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying' J Intellect Disabil Res. 2013; 57(10):980-92. Wiese, M Stancliffe, R.J., Read, S.,Jeltes G., &. Clayton J.M. (2015): Learning about dying, death, and end-of-life planning: Current issues informing future actions, Journal of Intellectual and Developmental Disability, 40(2) , 230-235.

17 : Bekkema N., de Veer AJ., Hertogh CM., Francke AL.(2016) Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study. Palliative Medicine 30(7): 625-33.

18 : Webber T. (2012) End of Life Care for People with Mental Illness. Journal of Ethics in Mental Health ,7: 1-4.

19 : Sidhu N, Dunkley ME, Egan MJ. “Not-for-resuscitation” orders in Australian public hospitals: policies, standardized order forms and patient information leaflets” MJA (2007) 186; 72-75.

20 : http://www0.health.nsw.gov.au/policies/pd/2014/pdf/PD2014_030.pdf

21 : For an example, see NSW Health policy directive on this, https://www1.health.nsw.gov.au/pds/ActivePDSDocuments/PD2014_030.pdf.

22 : Caplan GA, Meller A, Barbara Squires B, Stella Chan S, Willett W. “Advance care planning and hospital in the nursing home” Age and Ageing 2006; 35(6):581-585.

23 : Institute of Medicine (2015 ) Dying in America: Improving quality and honouring Individual Preferences Near End Of Life National Academies Press: Washington.

24 : Abbey J. “Palliative Care and dementia.” Alzheimer’s Australia Discussion Paper 7, February 2006. Alzheimer’s Australia; see also Draper,B, Karmel R., Gibson D., et al (2011) The Hospital Dementia Services project: age differences in hospital stays for older people with and without dementia; International Psychogeriatrics , 23 (10) ,pp. 1649-1658; Mukadam N., and Sampson,E.L. (2011) A systematic review of the prevalence, associations and outcomes of dementia in older general hospital inpatients Int Psychogeriatr. 23(3):344-55; Watkin L., Blanchard MR., Tookman A., Sampson EL.(2012) Prospective cohort study of adverse events in older people admitted to the acute general hospital risk factors and the impact of dementia. Int J Geriatr Psychiatry. 27(1):76-82; George J., Long S., Vincent C. (2013) How can we keep patients with dementia safe in our acute hospitals? A review of challenges and solutions J Royal Soc Med. 106(9):355-61.

25 : Givens JL., Selby K., Goldfield KS., Mitchell SL. (2012) Hospital transfers of nursing home residents with advanced dementia J Am Geriatrics Society 60(5): 905-9.

26 : Levy CR, Fish R, Kramer A. “Do-not-resuscitate and do-not-hospitalize directives of persons admitted to skilled nursing facilities under the Medicare benefit” J Am Geriatr Soc. (2005) Dec;53(12):2060-8

27 : Zweig SC, Kruse RL, Binder Ef, Szafara KL, Mehr DR, “Effect of do-not-resuscitate orders on hospitalization of nursing home residents evaluated for lower respiratory infections” J Am Geriatr Soc. 2004 52(1):51-8.

28 : Chernoff R. “Tube feeding patients with dementia” Nutr Clin Pract 2006; 21(2) : 141-146.

29 : Chang E. (2011) Palliative Care Dementia Interface: Enhancing Community Capacity Project. 3^rd Edition. University of Western Sydney.

30 : Kluger BM, Fox S, Timmons S, et al., Palliative care and Parkinson's disease: Meeting summary and recommendations for clinical research. Parkinsonism Relat Discord. 2017 Jan 11. pii: S1353-8020(17)30008-1. doi: 10.1016/j.parkreldis.2017.01.008. [Epub ahead of print]

31 : www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20ctober%202011.pdf

32 : Ashby MA Mendelson D. Gardner; “Re BWV: Victorian Supreme Court makes landmark Australian ruling on tube feeding” MJA (2004) 181;(8) ;442-445

33 : Abbey J. “Severe dementia- Nursing, palliative care” Paper presented at Master Class Alzheimer’s Disease March, 2007, Gold Coast.

34 : Chernoff R.“Tube feeding patients with dementia” Nutr Clin Pract. 2006 Apr;21(2):142-6.

35 : Cervo FA, Bryan L., Farber S.,“To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision-making process” Geriatrics. (2006) 61(6):30-5.

36 : Sampson EL., Candy B, Jones L. Enteral tube feeding for older people with advanced dementia, Cochrane Database of Systematic Reviews, 2009, Issue 2.

37 : Ashby and others, op cit (footnote 11)

38 : Gillick MR. “The use of advance care planning to guide decisions about artificial nutrition and hydration” Nutr Clin Pract. 2006 Apr;21(2):126-33.

39 : Chernoff R, op cit (footnote 13) 142-6.

40 : Cervo FA, Bryan L, Farber S., “To PEG or not to PEG: a review of evidence for placing feeding tubes in advanced dementia and the decision-making process” Geriatrics. (2006) 61(6):30-5.

41 : M.A. Ashby, A. Kellehear, & B. Stoffell. Resolving Conflict in End- Of-Life Care: We Need to Acknowledge the Inevitability of Death to Have Some Choice in the Manner of Our Dying.Med J Aust 2005; 183:230-231; Yuen J K Reid MC Fetters M.D. (2011) Hospital Do-Not-Resuscitate Orders: Why They Have Failed and How to Fix Them. J Gen Intern Med (26)7:791–7.

42 : Advance Care Directives Act 2013 (SA) s. 52.

43 : Dzeng E. et al. (2016) Moral Distress Amongst American Physician Trainees Regarding Futile Treatments at the End of Life: A Qualitative Study J Gen Intern Medicine 31:93-99; Ohlmstead J.A. and Dahnke M.D The Need for an Effective Process to Resolve Conflicts Over Medical Futility: A Case Study and Analysis. Critical Care Nurse. 2016;36[6]:13-23

44 : Reid C., Gibbins J., Bloor S., et al, (2013) Healthcare professionals' perspectives on delivering end-of-life care within acute hospital trusts: a qualitative study BMJ Support Palliat Care. 5(5): 490-5.

45 : McKellar D, Ng F, Chur-Hansen A. (2016) Is death our business? Philosophical conflicts over the end-of-life in old age psychiatry; Aging Ment Health.20 (6): 583-593

46 : Schneiderman L.J. Jecker NS. Jonsen AR (2017) The abuse of futility Perspectives in Biology and Medicine 60 (3): 295–313.

47 : White, B.P., Willmott, L., Close, E., et al (2016) What does “futility” mean? An empirical study of doctors’ perceptions. Medical Journal of Australia, 204(8), 318.e1-318.e5.

48 : Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [40].

49 : Ibid.

50 : Burke, R (on the application of) v. General Medical Council & Ors [2005] EWCA Civ 1003, [63]. Also reported at [2005] EWCA Civ 1003; [2005] 3 WLR 1132, 1148 and 1153 and [2005] EWCA Civ 1003; [2006] QB 273.

51 : Lemmens C. A New Style of End-of-life Cases: A Patient’s Right to Demand Treatment or a Physician’s Right to Refuse Treatment? The Futility Debate Revisited European Journal of Health Law 20 (2013) 167-183.

52 : Burke, R (on the application of) v. General Medical Council & Ors [2005] EWCA Civ 1003 at [5]

53 : Burke, R (on the application of) v. General Medical Council & Ors [2005] EWCA Civ 1003, [53] [55]. Also reported in [2005] EWCA Civ 1003; [2005] 3 WLR 1132 and [2005] EWCA Civ 1003; [2006] QB 273.

54 : Schneiderman L.J. Jecker NS. Jonsen AR (2017) Perspectives in Biology and Medicine 60 (3): 295–313; Wilkinson DJC. Savulescu J. Knowing when to stop: futility in the ICU. Curr Opin Anaesthesiol. 24:000–000.

55 : Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [44].The Burke Case is, Burke, R (on the application of) v. General Medical Council & Ors [2005] EWCA Civ 1003.

56 : Rurup ML, Onwuteaka-Philipsen BD, Pasman HR, Ribbe MW, van der Wal G. “Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia” Patient Educ Couns. 2006 Jun;61(3):372-80.

57 : The AM, Pasman R, Onwuteaka-Philipsen B, Ribbe M, van der Wal G. “Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study.” BMJ. 2002 Dec 7;325(7376):1326.

58 : White BP, Willmott L, Cartwright C, Parker M, Williams G, Davis J (2017) Comparing doctors' legal compliance across three Australian states for decisions whether to withhold or withdraw life-sustaining medical treatment: does different law lead to different decisions? BMC Palliat Care. 16(1):63.

59 : Advance Care Directives Act 2013 (SA) s 36(1) (a) to (e) and (5). See, the Health Practitioner Regulation National Law (South Australia) Act 2010 and the Health Practitioner National Law (South Australia). See also, Chapter 13. 5. 3. 6.

60 : Advance Personal Planning Act (NT) s 52. See also, the Health Practitioner Regulation National Law which is a schedule to the Health Practitioner National Law Act 2009 (Qld). See also, Chapter 13. 5. 2.

61 : Meeker MA, Jezewski MA. “Family decision making at end of life” Palliat Support Care. 2005 3(2):131-42.

62 : Moore KJ, Davis S, Gola A, et al. Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods. BMC Geriatr. 2017;17(1):135. Lamahewa, K., Mathew, R., Iliffe, S., Wilcock, J., Manthorpe, J., Sampson, E., & Davies, N. (2017). A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expectations; Markham S, Jessop T, Peisah C. (2019) Death, dying and dementia – a pivotal role for the GP. Medicine Today. 20 (9):10-17; Empowered Project Video on Death and Dying in Dementia https://empoweredproject.org.au/dementia-video/.

63 : Eggenberger SK Nelms TP “Artificial hydration and nutrition in advanced Alzheimer's disease: facilitating family decision-making.” J Clin Nurs. 2004 13(6):661-7.

64 : Ibid.

65 : Shalowitz DI, Garrett-Mayer E, Wendler D. “The accuracy of surrogate decision makers: a systematic review”. Arch Intern Med. (2006) 13;166(5):493-7.

66 : Miura Y, Asai A, Matsushima M, Nagata S. “Families' and physicians' predictions of dialysis patients' preferences regarding life-sustaining treatments in Japan.” Am J Kidney Dis. 2006 Jan;47(1):122-30

67 : Tang ST, Liu TW, Lai MS, Liu LN, Chen CH “Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan” J Pain Symptom Manage. (2005) 30(6):510-8

68 : Shalowitz DI And others, op. cit. (footnote 27).

69 : Winzelberg GS, Hanson L, Tulsky JA. “Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families” J Am Geriatr Soc (2005) 53, 1046-150.

70 : Hertogh CMPM. End-of-life care and medical decision making in patients with dementia. In: Burns A (ed) Standards in dementia care – European Dementia Consensus Network (EDCON), London/New York, Taylor & Francis, 2005, 339-54.

71 : Sands LP, Ferreira P, Stewart AL, Brod M, Yaffe K. “What explains differences between dementia patients’ and their caregivers’ratings of patients’ Quality of Life?” Am J Geriatr Psychiatr 2004; 12: 272-80.

72 : Hertogh CMPM. End-of-life care and medical decision making in patients with dementia. In: Burns A (ed) Standards in dementia care – European Dementia Consensus Network (EDCON), London/New York, Taylor & Francis, 2005, 339-54.

73 : Institute of Medicine (2015) Dying in America: Improving quality and honouring Individual Preferences Near End of Life National Academies Press: Washington.

74 : Tsoh J., Peisah C., Narumuto J., Masaru Mimura, M Wongpakaran N., Kato (2015) Cross national comparisons of substitute decision making across Asia and Australia International Psychogeriatrics 27(6):1029-37. Tang ST, Liu TW, Lai MS, Liu LN, Chen CH. “Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan” J Pain Symptom Manage. (2005) 30(6):510-8

75 : Wen K-Y, Lin Y-C. ChengJ-F et al., (2013) Insights into Chinese perspectives on do-not-resuscitate (DNR) orders from an examination of DNR order form completeness for cancer patients Support Care Cancer (2013) 21:2593–2598, at 2596.

76 : Dzeng, E, Alessandra Colaianni, A, Roland, M et al., (2015) Influence of Institutional Culture and Policies on Do-Not-Resuscitate Decision Making at the End of Life; JAMA Intern Med. E1-E8.

77 : NSW Health, Guidelines for end-of-life care and decision-making, p 9.

78 : Ibid. Note the creation of statutory obligations in relation to this issue on health care providers in South Australia and the Northern Territory. See 14. 2. 3. 2 above and the parts of Chapter 13 referred to there.

79 : Winzelberg GS, Hanson L, Tulsky JA. “Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families” J Am Geriatr Soc (2005) 53, 1046-150.

80 : Weijer C, Singer P., Dickens BM., “Workman S Bioethics for clinicians: 16 Dealing with demands for inappropriate treatment” Canadian Medical Association Journal (1998) 159, 817-21, p 818

81 : Ibid., p 818

82 : Ibid, p 820.

83 : Conflict Resolution in End of Life Settings (CRELS) (2010) Research, Ethics & Public Health Training Branch Population Health Division NSW Department of Health: NSW Department of Health, http://www.health.nsw.gov.au/patients/acp/Publications/conflict-resolution.pdf

84 : Jones C, Peisah C. (2015) Working alliances not loggerheads: understanding and addressing dissonance between families and treating teams in older people's mental health. Australasian Psychiatry. 23(5):488-92.

85 : Tang ST, Liu TW, Lai MS, Liu LN, Chen CH. “Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan” J Pain Symptom Manage. (2005) 30(6):510-18.

86 : Ibid

87 : Winter L Parks SM. J et al (2008) Family discord and proxy decision makers' end-of-life treatment decisions. Palliat Med. 11(8):1109-14.

88 : D Lane v Northern NSW Local Health District; E Lane v Northern NSW Local Health District [2013] NSWDC 12 (15 February 2013)

89 : Smith, R. (2000) 'A good death: An important aim for health services and for us all, British Medical Journal, 320 (15 January): 129. Steinhauser et al, 2000 Factors Considered Important at the End of Life by Patients Families and other Care Providers JAMA 284(19):2476-82).

90 : Australian and New Zealand Intensive Care Society (2014) ANZICS Statement on Care and Decision-Making at the End of Life for the Critically Ill.(Edition 1.00) Melbourne. https://www.anzics.com.au/wp-content/uploads/2018/08/ANZICS-Statement-on-Care-and-Decision-Making-at-the-End-of-Life-for-the-Critically-Ill.pdf

91 : Supreme Court Act 1970 (NSW) s. 23. See also Constitution Act 1975 (Vic) s 85 and Gardner re BWV [2003] VSC 173 [96], Supreme Court Act 1991 (Qld) s 9 (and also Supreme Court Act 1867 (Qld) ss 22 and 34), Supreme Court Act 1935 (SA) s 17(2)(a)(i), Supreme Court Act 1935 (WA) s 16(1), Supreme Court Act 1933 (ACT) s 20(1)(a) and Supreme Court Act 1979 (NT) s 16.

92 : MAW v Western Sydney Area Health Service [2000] NSWSC 358, (1999) 49 NSWLR 231,237-243; Northridge v Central Sydney Area Health Service [2000] NSWSC 1241, (2000) 50 NSWLR 549, 552-554.

93 : Northridge v Central Sydney Area Health Service [2000] NSWSC 1241, [19]-[20][2000] NSWSC 1241; , (2000) 50 NSWLR 549.

94 : Ibid. [23].

95 : Ibid. [24].

96 : Ibid. [125].

97 : Isaac Messiha v South East Health [2004] NSWSC 1061, [28]. The analysis in that case was approved in Krommydas v Sydney West Area Health Service [2006] NSWSC 901 [9] and applied in Melo v Superintendent of Royal Darwin Hospital [2007] NTSC 71.

98 : Ibid. [26] and [28].

99 : Skene, L, “The Schiavo and Korp cases: Conceptualising end-of-life decision-making” (2005) 13 JML 223.

100 : Ibid. 228.

101 : We use this term – formerly used to describe patients in persistent coma - as it was formerly referred to in cases and the literature; Ibid. 227 and 228.

102 : Ibid. 228-229.

103 : [2009] NSWSC 761.

104 : Ibid. [40].

105 : H Ltd v J [2010] SASC 176.

106 : Ibid. [4].

107 : Ibid. [14]. See Supreme Court Act 1935 (SA) s. 17.

108 : Ibid. [36].

109 : Ibid. [39].

110 : Ibid. 47. Referring to Mc Dougall J in Hunter and New England Area Health Service v A [2009] NSWSC 761 [36].

111 : Hunter and New England Area Health Service v A [2009] NSWSC 761 [31].

112 : H Ltd v J [2010] SASC 176 [54]-[58].

113 : Ibid. [59]

114 : Ibid. [65].

115 : Ibid. [68].

116 : Ibid. [73].

117 : Ibid. [98].

118 : Re JS [2014] 302.

119 : Ibid. [19] and [32].

120 : X v The Sydney Children's Hospitals Network 2013 [NSWSC] 302 [59]

121 : Re JS [2014] 302 [36].

122 : See, for example, R v Nicol [2005] NSWSC 547 and R v Shirley Justins [2008] NSWSC 1194

123 : See, Advance Care Directives Act 2013 (SA) and Advance Personal Planning Act (NT). See also, Chapter 13. 5. 2 and 13. 5. 3.

124 : www.health.nsw.gov.au/pubs. End-of-Life Care and Decision-Making – Guidelines. Doc. No. GL2005­ 057.

125 : Advance Planning for Quality Care at End of Life. Action Plan 2013-2018. NSW Ministry of Health http://www.health.nsw.gov.au/patients/acp/Publications/acp-plan-2013-2018.pdf

126 : NSW Health, Guidelines for end-of-life care and decision-making, 2; Advance Planning for Quality Care at End of Life. Action Plan 2013-2018. NSW Ministry of Health http://www.health.nsw.gov.au/patients/acp/Publications/acp-plan-2013-2018.pdf.

127 : Guardianship Act 1987 (NSW) Part 2.

128 : NSW Health, Guidelines for end-of-life care and decision-making, 3. Advance Planning for Quality Care at End of Life. Action Plan 2013-2018. NSW Ministry of Health http://www.health.nsw.gov.au/patients/acp/Publications/acp-plan-2013-2018.pdf

129 : Ibid.

130 : Ibid. 7-8.

131 : Conflict Resolution in End of Life Settings (CRELS) (2010) Research, Ethics & Public Health Training Branch Population Health Division NSW Department of Health: NSW Department of Health,, http://www.health.nsw.gov.au/patients/acp/Publications/conflict-resolution.pdf

132 : Who is a person’s “person responsible” is set out in s. 33A(4) of the Guardianship Act 1987 (NSW). It is also set out in Chapter 12.4.5 and 12.4.6.

133 : See s. 40(1) of the Guardianship Act 1987 (NSW).

134 : See s. 40(2) of the Act for the exact terms of this requirement.

135 : See s. 40(3)(a) of the Act.

136 : See ss. 32(b) and 40(3)(c) of the Act.

137 : Hunter and New England Area Health Service v A [2009] NSWSC 761. See also Chapter 13.6 and 13.6.1; but note the views of Kourakis J in 14.3.1 above.

138 : See s. 6E(1)(d) and (b) and 6E(2) of the Act.

139 : Hunter and New England Area Health Service v A [2009] NSWSC 761. See also Chapter 13.6 and 13.6.1; but note the views of Kourakis J in 14.3.1 above.

140 : See s. 16(2)(b) of the Act.

141 : Hunter and New England Area Health Service v A [2009] NSWSC 761. See also Chapter 13.6 and 13.6.1; but note the views of Kourakis J in 14.3.1 above.

142 : See s 6E(1) and (2) of the Guardianship Act 1987 (NSW).

143 : WK v Public Guardian (No 2) [2006] NSWADT 121, [12].

144 : BAH [2007] NSWGT 1, [128]. Note that the BAH Case was known as Re: AG [2007] NSWGT 1 (5 February 2007).

145 : Ibid. [54].

146 : Ibid. [67].

147 : Ibid. [73].

148 : Ibid.[68].

149 : FI v Public Guardian [200] NSWADT 263, [55].

150 : Ibid. [1].

151 : Ibid. [31].

152 : Ibid. [44].

153 : Ibid. [46]. O’Connor DCJ noted that those principles were set out in a number of cases including, Northbridge v Central Sydney Area Health Service [2000] NSWSC 1241; (2000) 50 NSWLR 549 at 553-554; Airedale National Health Service; Auckland Area Health Board v Attorney General [1993] 1 NZLR 235 at 252-253; Re G [1996] NZHC 1285; [1997] 2 NZLR 201; Messiha v South East Health [2004] NSWSC 1061 at [22]- [28]; Hunter Area Health Service v Marchlewski (2000) 51 NSWLR 264 at 268 [91].

154 : Ibid. [48]. He cited Airedale NHS Trust v Bland [1992] UKHL 5; [1993] AC 789 (HL), esp at 864 per Lord Goff of Chieveley, and at 894 per Mustill LJ; Northbridge v Central Sydney Area Health Service [2000] NSWSC 1241, esp at [24] per O’Keefe J; and Messiha v South East Health [2004] NSWSC 1061 (Howie J). He referred also to, Gardner; re BWV [2003] VSC 173 (Morris J); Public Advocate v RCS (Guardianship) [2004] VCAT 1880 (Morris J, President); and Re Korp (Guardianship) [2005] VCAT 779 (Morris J, President).

155 : Ibid. [49].

156 : _FI v Public Guardian_ [2008] NSWADT 263, [51] and [55].

157 : Hunter and New England Area Health Service v A [2009] NSWSC 761. See also Chapter 13.6 and 13.6.1.

158 : Northridge v Central Sydney Area Health Service [2000] NSWSC 1241 [24].

159 : Re HG [2006] QGAAT 26.

160 : NHS Trust A v H [2001] 2 FLR 501, 504.

161 : The case law, which is cited in endnotes to paragraphs in this section, 14.4.1.1 includes the following judgments of the Supreme Court of New South Wales, Northridge v Central Sydney Area Health Service [2000] NSWSC 1241; (2000) 50 NSWLR 549 and Messiha v South East Health [2004] NSWSC 1061.

162 : For an example see, LE and LF v Public Guardian [2009] NSWADT 78, a case in which the then NSW Administrative Decisions Tribunal upheld a decision of the Public Guardian, who was invested by the then Guardianship Tribunal with functions to make decisions in relation to the health needs including to make end of life health care decisions, including advance care planning decisions, of a man who was in a state of post-coma unresponsiveness (previously called permanent vegetative state). The Administrative Decisions Tribunal upheld the Public Guardian’s decision to approve an advance care plan, which provided for cessation of feeding of the man in certain circumstances.

163 : LD [2000] NSWGT 4.

164 : _FC_ [1994] NSWGB 3.

165 : Ibid.

166 : Re PS (unreported, Guardianship Board Matter No: 96/4655, 24 December 1996), 5-6.

167 : MB [2001] NSWGT 2.

168 : Ibid. 6.

169 : Ibid. 8.

170 : Ibid.

171 : QMU [2017] NSWCATGD 19, [7], [18]-[23].

172 : _NA_ [2002} NSWGT 1.

173 : _NB_ [2002] NSWGT 2.

174 : Guardianship Act 1989 (NSW) ss 40(3) and 44(2(a)(i).

175 : Ibid. s 46(2)(a)(iii).

176 : Hunter and New England Area Health Service v A [2009] NSWSC 761 [40].

177 : See, for example, FB [1994] NSWGB 2; a matter involving a Christian Scientist.

178 : Gardner re BWV [2003] VSC 173 [99]-[100].

179 : Medical Treatment Act 1988 (Vic) s 5B.

180 : Gardner re BWV [2003] VSC 173, [90]-[91]. As to the importance of this decision in relation to understanding the dying process see, Mendelson, D and Ashby, M “The medical provision of hydration and nutrition: Two different outcomes in Victoria and Florida” (2004) 11 JML 282, 285-286.

181 : Ibid. [104].

182 : Ashby MA Mendelson D. Gardner; “re BWV: Victorian Supreme Court makes landmark Australian ruling on tube feeding” MJA (2004) 181;(8) ;442-445.

183 : Guardianship Act 1987 (NSW) s 33 and Guardianship and Management of Property Act 1991 (ACT) s 32A.

184 : Public Advocate v RCS [2004] VCAT 1880.

185 : Ibid. [28].

186 : Ibid [25]-[26].

187 : Powers of Attorney Act 1998 (Qld) s 63(2).

188 : [2003] VSC 173.

189 : Korp (Guardianship) [2005] VCAT 779.

190 : For a detailed description of this matter and the Public Advocate’s role in it see, Office of the Public Advocate - Annual Report 2005, 6-10, www.publicadvocate.vic.gov.au.

191 : Korp v Deputy State Coroner [2006] VSC 282, [6].

192 : Powers of Attorney Act 1998 (Qld) s 36(2). Despite s 66(2) of the Guardianship and Administration Act 2000 (Qld), ss 63 and 63A of that Act may also apply to add further complexity to the situation.

193 : Guardianship and Administration Act 2000 (Qld) s 66(3).

194 : Ibid. s 66(4). An attorney is assumed to have the maximum powers that can be given to an attorney, unless the enduring document states otherwise. See, Powers of Attorney Act 1998 (Qld) s 77. Consequently, an attorney under an enduring power of attorney will usually be empowered to make health care decisions.

195 : Guardianship and Administration Act 2000 (Qld) s 66 (5) and Powers of Attorney Act 1998 (Qld) s 63 and Sch 3. Note that where the substitute decision-maker is being sought from statutory health attorneys who are relations, the first found who qualifies under the Powers of Attorney Act 1998 (Qld) s 63 and Sch 3 can act as the substitute decision-maker.

196 : Guardianship and Administration Act 2000 (Qld) s 66(5) and Powers of Attorney Act 1998 (Qld) s 63.

197 : Guardianship and Administration Act 2000 (Qld) s 66A and 66B.

198 : Ibid. s 80(1)(d) and (f).

199 : See for example, Re HG [2006] QGAAT 26, Re TM [2002] QGAAT 1, Re MC [2003] QGAAT 13 and Re RWG [2000] QGAAT 2.

200 : Re MC [2003] QGAAT 13, [71].

201 : [2006] QGAAT 26. For a case involving the withholding of cardiac pulmonary resuscitation see, Re RWG [2000] QGAAT 2.

202 : Ibid. [58].

203 : Ibid. [64].

204 : QCAT’s obligation to consider the principles is found in Guardianship and Administration Act 2000 (Qld) s 11(1) while the principles themselves are in Schedule 1 of the Act.

205 : Ibid. Item 12.

206 : Re HG [2006] QGAAT 26, [93].

207 : Ibid. [95]. Airedale NHS Trust v Bland [1992] UKHL 5; [1993] AC 789

208 : Ibid. [95]-[96].

209 : Re TM [2002] QGAAT 1.

210 : Ibid. [100]-[101].

211 : Ibid. [124].

212 : Ibid. [162].

213 : Willmott,L and White, B, “Charting a course through difficult legislative waters: Tribunal decisions on life-sustaining measures” (2005) JLM 441.

214 : Consent to Medical Treatment and Palliative Care Act 1995 (SA) s.17(1) and (3). Note that “medical practitioner” includes dentist and “terminal phase of a terminal illness” means the phase of the illness reached when there is no real prospect of recovery or remission of symptoms (on either a permanent or temporary basis); see, s. 3.

215 : Ibid. s. 17. The term “patient’s representative” means a person authorised under this or any other Act or law to make decisions about the administration of medical treatment of the relevant kind to the patient. The term would include a substitute decision-maker appointed under the Advance Care Directives Act 2013 (SA) and may include a guardian appointed by SACAT under the Guardianship and Administration Act 1993 (SA) or SACAT itself.

216 : Ibid. s. 17(3).

217 : Ibid. s. 18.

218 : Advance Care Directives Act 2013 (SA) s. 19(1) and (2).

219 : Ibid. ss. 36(1) and 10.

220 : Ibid. s 10(a) and (d).

221 : Ibid. s. 23(4).

222 : Ibid. s 52.

223 : Ibid. s. 34(2) and note to that sub-section.

224 : Ibid. s. 34(1).

225 : Ibid. s. 35(1)(a).

226 : Ibid. s. 35(1)(b) and (c).

227 : Advance Personal Planning Act (NT) s. 8.

228 : Ibid. ss. 6(1)-(3), 20 and 40(a). Impaired decision-making capacity is dealt with in Chapter 12. 10. 4.

229 : Ibid. s. 41(2) and (3). This matter is also dealt with in Chapter 12. 10. 5. 3.

230 : Ibid. s. 52.

231 : Ibid. s. 51.

232 : Ibid. Part 4, Divisions 2 and 3.

233 : Ibid. ss. 45(3), 46(3) and 47(3).

234 : Ibid. s. 91.

235 : Ibid. s. 92.

236 : Natural Death Act (NT) s 4.

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