Germanwings tragedy prompts mandatory reporting calls

The AMA has warned that calls for the mandatory disclosure of information around the mental health of airline flight crew could dissuade troubled pilots from seeking necessary treatment.

There have been proposals to require treating doctors to report airline pilots and flight engineers who have mental health problems following the deliberate downing of a Germanwings airliner carrying 150 passengers and crew in the French Alps late last month.

Investigators have concluded that 27-year-old co-pilot Andreas Lubitz deliberately flew the Airbus A320 plane into the side of a mountain on 25 March after locking the plane’s captain out of the cockpit. All on board were killed.

It has been reported that Mr Lubitz suffered bouts of depression, was concerned about his eyesight, and had received treatment for suicidal tendencies before obtaining his pilot’s license.

Last week Germanwings’ parent company Lufthansa revealed that Mr Lubtiz had notified the company of his struggle with depression during his pilot training course in 2009.

The case has prompted some to call for laws requiring medical practitioners to report pilots being treated for mental illness to aviation authorities.

But the AMA and other medical experts have questioned the necessity or usefulness of such a measure.

Australasian Society of Aerospace Medicine President Dr Ian Cheng told Medical Observer Designated Aviation Medical Examiners who gave pilots their compulsory annual health checks were already legally obliged to report any significant health condition.

Dr Cheng said that before Australian aviation authorities decided several years ago to allow pilots to continue flying after a depression diagnosis, as long as they were receiving treatment and met strict conditions, the problem had been driven underground because pilots with depression were afraid of losing their license.

AMA Vice President Dr Stephen Parnis warned against any rush to institute mandatory reporting obligations for airline pilots receiving medical treatment.

“Doctors may disclose information about a patient’s medical record if they judge there is a serious threat to the life, health or safety of an individual or the public,” Dr Parnis told Medical Observer. “The last thing we want is a shopping list of things requiring mandatory reporting. That would undermine the confidence of the patient in the doctor.”

The AMA Vice President said mandatory reporting rules for medical practitioners had been blamed for deterring some doctors from seeking help, and there could be a similar risk with such rules for pilots.

Revelations that Mr Lubitz had notified Lufthansa about his battles with depression is likely to intensify the focus on how to best monitor and manage pilots with mental health issues.

Adrian Rollins

Disclosing genetic information to at-risk relatives: new Australian privacy principles, but uniformity still elusive

Recent reforms to the Privacy Act 1988 (Cwlth)1 have led to a single set of Australian Privacy Principles (APPs), replacing the former National Privacy Principles (NPPs) and Information Privacy Principles (IPPs). Although a key objective of the reforms was to ensure greater consistency on privacy regulation in Australia,2 the law surrounding disclosure of genetic information to at-risk genetic relatives varies across Australia.

Brief legislative history

While patient autonomy features strongly in health law, a legislative exception to a patient’s right to privacy was introduced in 2006 as an amendment to the Privacy Act.2–4

Former NPP 2.1(ea) authorised the disclosure by health practitioners of genetic information to a genetic relative without the patient’s consent if the health practitioner reasonably believed that disclosure was necessary to lessen or prevent a serious threat to the life, health or safety of an individual who is a genetic relative. The amended Privacy Act enabled the National Health and Medical Research Council to publish guidelines (approved by the Privacy Commissioner) on the use and disclosure of genetic information to a patient’s genetic relatives under s 95AA of the Privacy Act in 2009.5 The substance of this approach is similar to that adopted in the United Kingdom.6

In 2014, the original guidelines were revised to comply with the Privacy Act reforms, but the substantive aspects remain unchanged.7

Onerous requirements are imposed on health practitioners who disclose genetic information to a genetic relative notwithstanding the patient’s refusal to provide consent. Guideline 1 reflects the wording of s 95AA — that use or disclosure of genetic information without consent may proceed only when the authorising medical practitioner has a reasonable belief that this is necessary to lessen or prevent a serious threat to the life, health or safety of a genetic relative. The guidelines strongly urge the practitioner faced with this dilemma to strive to win patient consent for disclosure. The guidelines do not have the power of law, but practitioners can avoid actionable complaint by following them closely.

Experience in practice

The importance of the disclosure guidelines is best illustrated through an example. In families where there is a strong history of breast cancer, genetic testing is likely to be recommended to establish whether female genetic relatives of a patient affected carry the BRCA1 or BRCA2 mutation. Drawing on scenario 2 in the revised guidelines,7 a woman whose maternal grandmother had died of breast cancer at a young age and had tested positive for a mutation in the BRCA2 gene may be advised to undertake genetic testing for this mutation. In the event that the test proves positive, this information would be relevant for her genetic relatives (females and males, who can also be affected by breast cancer), and these relatives should be advised to make contact with a genetics service. In some instances, the patient may not wish to share this information. For example, as in the guidelines scenario, the patient may be willing to advise her own daughters but not other relevant family members (eg, sisters). In the event that there was a sustained refusal to allow any of the relevant genetic relatives to be contacted, the guidelines could be used to allow the patient’s health practitioner to make disclosure to those relatives without the consent of the patient, as the threshold requirement of disclosure being “necessary to lessen or prevent a serious threat to the life, health or safety of his or her genetic relatives” would be satisfied.7

The actual use by Australian health practitioners of the disclosure exception in the legislation and accompanying guidelines is unclear. There appears to be some uncertainty regarding the operation of aspects of the legislation. Bonython8 and Arnold9 have suggested that some misunderstandings could arise. For example, doctors may think that if a patient declines to consent to notify their relatives, disclosure by the doctor may then occur. However, the preconditions for disclosure as set out in the guidelines require that the doctor counsels the patient to ensure that they have made an informed decision. In particular, guideline 3 states that “Reasonable steps must be taken to obtain the consent of the patient or his or her authorised representative to use or disclose genetic information” and gives guidance on appropriate processes when consent is withheld by, for example, respecting the patient’s decision by allowing time for review of the decision and considering referral of the patient to a genetics service. It has also been suggested that there is insufficient differentiation between genetic and familial information, with the result that genetic information which cannot pose a risk to genetic relatives may be disclosed.8 This suggestion ignores the preconditions that must be met before disclosure without consent can be made, including guideline 1 noted above, which clearly confines disclosure to heritable information that is actionable.

Further, the guidelines seek to minimise the risks to the privacy of the genetic relative, specifying that disclosure should be limited to such information as necessary to communicate the increased risk. The sample letter, included in the guidelines, suggests that a general indication of genetic risk in the family will be given (where possible avoiding identification of the patient), thereby giving the genetic relative the opportunity to follow up and obtain further information if they wish. The guidelines (at 3.4) and the Privacy Act (s 16A) allow an APP entity to collect personal information (including contact details for genetic relatives) if it is unreasonable or impracticable to obtain the individual’s consent to that collection, including circumstances where a person refuses to give consent to disclosure, and where that collection is necessary to give effect to disclosure to a genetic relative under the Privacy Act and guidelines.

The initial amendments allowing disclosure were limited to health practitioners in the private sector; there was no equivalent provision applying to health practitioners working for Commonwealth government agencies. Further, as the Commonwealth does not have the power to regulate state and territory authorities, which include public hospitals, it was always clear that to achieve comprehensive national coverage, parallel state and territory legislation would also be required.2

2014 Privacy Act amendments

More recently, privacy reforms have been introduced under the Privacy Amendment (Enhancing Privacy Protection) Act 2012 (Cwlth), commencing March 2014. This was the first stage of implementation of the 2008 recommendations of the Australian Law Reform Commission.10 The amending legislation has led to the introduction of the APPs, which consolidate and replace the IPPs and NPPs, and cover the use and disclosure of health information under s 16B(4) of the Privacy Act. Revisions to the enabling s 95AA guidelines were also required; the 2009 version was rescinded and replaced with new guidelines in 2014,7 which replace all references to the NPPs with references to the new APPs. The recent privacy amendments have extended the exemption in relation to disclosure to health practitioners working for Commonwealth government agencies. However, there is still no uniformity because the exemption does not cover state and territory authorities, which include public hospitals.

A call for uniformity

A uniform approach to this issue is surely desirable. Data from the Australian Institute of Health and Welfare indicate that, of the employed medical practitioners in Australia in 2012, 29 834 worked in the public sector, 31 555 in the private sector and 16 497 in both.11 Currently, there is potential for health practitioners working across institutions and jurisdictions to be subject to conflicting regulations whereby they are legally able to disclose genetic information to genetic relatives in their capacity as health practitioners in the private sector but not if employed by a state or territory public health entity. Further, families may be spread across a number of states and it would be desirable if health practitioners only had to comply with a single uniform system. To ensure uniformity across Australia, proactivity is required from the states and territories to allow for disclosure to genetic relatives by health practitioners working for public hospitals. There are two options for securing a more consistent, national approach. States and territories could legislate to adopt s 16B(4) and s 95AA of the Privacy Act and the guidelines for their use or, alternatively, make their own provision through state and territory privacy legislation and guidelines.

The only states to currently make provision for disclosure of health information are South Australia (s 93(3)(c) and (e) of the Health Care Act 2008) and Victoria (Health Privacy Principle [HPP] 2.2(h)(i) of the Health Records Act 2001). However, the South Australian provision is cast in general terms and is not specific to genetic information, while the Victorian provision has limited applicability to genetic information as it requires the risk to be both serious and imminent before disclosure is permitted.

New South Wales passed an amending Act to the Health Records and Information Privacy Act 2002 (the Health Legislation Amendment Act 2012), which specifically covers the disclosure of genetic information. This amends the NSW HPPs in the Health Records and Information Privacy Act, making them consistent with the Commonwealth s 95AA guidelines.12 This will allow disclosure of genetic information to genetic relatives when there is a reasonable belief that this is necessary to lessen or prevent a serious threat to life, health or safety of genetic relatives (HPP 11(1)(c1)).

Conclusion

It is now incumbent on other states and territories to follow, by legislatively adopting the Commonwealth legislation and guidelines or enacting their own legislation and guidelines to allow for disclosure in appropriate circumstances. It is nonsensical that the capacity for a health practitioner to disclose genetic information to genetic relatives without the patient’s consent depends on whether they work in the private or public sector. Clearly, a more uniform approach should be the goal, consistent with the thrust of the Australian Law Reform Commission recommendations,10 but it requires a cooperative approach to be taken on this important issue.

A new man

Czeslaw moves his walking frame up the carpet, shifting along noiselessly. He patrols the ward with calm precision, past the blue walls hung with the picture of the taffy pony and the picture he loves of bushrangers staging a bail-up.

“Now that is a proper painting”, he remarks, pulling up alongside. Though his eyes have lost their pilot’s acuity, he still loves an action scene.

As I have been taught in tutorials, I walk this procession with him, my eyes trained on his navy slippers. Lachlan, Murray, Murrumbidgee wards. He keeps a fast pace, a shuffling gait, walking-not-talking, a wide turning circle. A ninety-three-year-old hulking Pole with porous bones, walnut kidneys and mutinous blood. His body is a leaky vessel, each day becoming more pervious to the world around him.

***

The hangar is behind him. The terrain below is fast becoming an impressionist’s canvas, with height and the early morning strands of light. He turns to Normandy. It is unlikely that he will feel solid earth again. The vibrations move through him. Oddly detached, he is an officer of the Polish Air Force, returning home.

***

“They’ve put me in …” — he pauses, knocking on the thin plaster wall — “what is it called? Cardboard. Like an egg box. I’m an old egg”. He gusts with laughter. The nurse steps past and grins at us. “You mean egg carton, Charlie?” He likes her — she is gentle but guards his bones like a terrier against the ravages of the enemy. For Charlie, that means the lino bunched up unevenly at the threshold, the shower step and the strong winds that whistle round the courtyard, slamming doors and buffeting limbs.

There is no purpose to his walk, but he still exhibits a lifetime’s habit of certainty in his step. He steers like he’s back in the cockpit of the Piper Pawnee aircraft, crop-dusting in the Riverina. Each movement is calculated in minute detail, calibrating the gap between the frame and the doorway, between his body and a low ceiling he once would have grazed.

It is after lunch and the gait assessment component of this medical examination has received much emphasis. My heart lurches as we take a corner, to arrive at Room 19.

“Thank you Mr Rogers, this is very kind of you to answer my questions.” I don’t think he’s understood me — the hoary white eyebrows go up but still he pats the bedspread and tells me to sit down, while ignoring all the things he’s been told about the frame, peremptorily flicking it to the side as he assumes his chair.

He tells me what I think I know already, that his blood is a standing army gone mutinous on poor rations. It’s the same chronic leukaemia that he’s lived with for some time, but things have deteriorated (“blasts”) and he knows his number is up.

***

Early morning. Landmarks identified. He’s on a reconnaissance mission, and is losing altitude. Civilisation is his guide and for a second he contemplates it and is confounded. All at once they are here — three of them. It is impossible …

***

“I started here as a ‘New Australian’”, he offers. A new man from the skies of old France, broken Europe, another Polish exile. He looks hard at me down his crooked nose, blinding me with pale blue eyes — the farsighted gaze of a survivor. He seems so very old in that moment. The sometime president of the White Eagle Club is a charismatic man, though not given to flights of eloquence. He turns his deeply lined face to the window and we look out together at the lawn that slopes down to the banks of the river.

This is a holding pen where time stands still, yet there is movement, a silent accretion. The windflowers in their vases gather a fine veil of dust and the webs of daddy longlegs. Sinews long frayed are fed with Sustagen and jellies. The concentration of protein in urine samples rises and falls, the iron levels in blood wax and wane. The cleaner sweeps her vacuum cord in and out. Cells amass.

“I patrolled the skies in my silver capsule — an absurdity really, flimsy thing. I thought I would die then, when the oxygen froze.” We talk of the planes and what they look like from the sky and ground. I learn that the enemy is easily identifiable by its shape outlined against the sheets of yellow earth. I learn that the light of the sun can hide a man piloting screaming metal. He seems happy to talk on, and a curious haze takes us over. “I thought I would die but really, I was dead already. In the world of probability I was fragments of bone and viscera spread over the earth. All that remained was for time to enforce its law of averages.”

But this is not the world of probability, we concur. Czeslaw flew on after the war and was assimilated among the living, called himself Charlie Rogers and ate Riverine vegetables with his kielbasa. He tells me, “I came here after many years of wandering. I had a house and my wife and then the children.” An afterlife in bronze, an Elysian Field with solid shapes. The building of a house, another peg riveting to the ground — hard brown bricks and a vegetable garden. “I wore a sports coat to the Saturday match.” A Hungarian named Joe ran the general store and they would go to the pub and prop on the magnificent red gum bar.

“Have you ever smoked?”

“Yes, a lot of ham. Sausages. Pork. And a pipe.”

“Do you drink alcohol?”

“Some beer.”

He is enjoying himself now, and tells me more stories, stemming from the years of wandering, before Mary and the children. He worked at a mill in the bush, as part of an assisted immigration program.

“One night I went out to catch some fish. I was having trouble sleeping and I thought that I might creep up and get one out of a deep pool. But I lost my way and the river twisted so much, round tall tussocks that created shadows like men’s. I thought then, ‘I am a displaced person’. But in a moment, I recognised the stars of Orion, upside down of course.” A survivor learns to navigate by any arrangement of the heavens.

We are back in the room. Curiously, the only relic of his life here is a Western Bulldogs Football Club poster, “Sons of the West” all smiling brightly. There hasn’t been time really to collect photographs and the silver cross and a jar of rollmops, not that his appetite is up to it. His daughter will bring them on Sunday, knowing he still craves a taste of the Baltic.

Looking at him, I don’t — I can’t — believe he will die. He is immortal — the consummate survivor. So I finish a little awkwardly, thanking him for his time (a smile), and he shakes my hand with great firmness.

“Although this is not the world of averages, how many unlikely years can there be?”

***

The noise now is deafening. Propellers careen, smoke rises from the fuselage. Gravity reaches up to give him new weight. The pieces rip apart and down below life is studded with Lombardy poplars — so elegantly remote — pinpoints of green in a fabric of maize and barley.

Doctors’ knowledge of the law on withholding and withdrawing life-sustaining medical treatment

In reply: General medicine was one of eight specialties included at the pilot stage of our research. However, the response rate of general physicians was only 6% — the lowest of all specialties. We considered this rate to reflect a relative lack of interest in the topic, perhaps because end-of-life decision making is only part of the more diverse practice of general physicians. Our method for determining which specialties to survey also included a literature review, and asking doctors who pretested the survey instrument which specialties were most involved in end-of-life decision making. After extensive discussion within the research team, general physicians were removed from the main study.

Despite this, we agree with Buckmaster and Forbes that surveying general physicians would be valuable, given their confirmation that end-of-life care is part of this specialty’s practice, and in order to understand the extent to which general physicians know the law. If it is possible to achieve a sufficient response rate, we would welcome the opportunity to conduct the study with this specialty.

Treatment for gender dysphoria in children: the new legal, ethical and clinical landscape

Gender dysphoria is a serious condition in which a child’s subjectively felt identity and gender are not congruent with her or his biological sex, causing clinically significant distress or impairment in social functioning or other important areas of functioning. Over the past 10 years, the Family Court of Australia has received an increasing number of applications seeking authorisation for the commencement of hormone therapy to treat children diagnosed with gender dysphoria.1–11

Treatment of children with gender dysphoria is given in two stages. Stage 1 treatment involves the provision of puberty blocking medication, and stage 2 comprises cross-sex hormone treatment. Until very recently, courts considered both stages of treatment together and regarded them at law as a form of special medical procedure, which can only be lawfully performed with court approval. In a significant recent development, courts have drawn a distinction between the two stages of treatment, permitting parents to consent to stage 1 treatment. In addition, it has been held that a child who is determined by a court to be Gillick competent can consent to stage 2 treatment. A Gillick-competent child is one who is found to possess sufficient understanding and intelligence to enable her or him to understand fully what is proposed.12 Medical practitioners working in this field require an understanding of these principles, so that they know when and why they must obtain court approval before conducting treatment.

In this article, we outline the nature of gender dysphoria and its treatment, explain the legal principles regarding special medical procedures, and analyse the recent legal developments concerning treatment for gender dysphoria. These developments make substantial changes to the previous legal position about who can consent to both stages of treatment for gender dysphoria, and have important ethical, clinical and practical implications for medical practitioners in this field.

Gender dysphoria in children and treatment for the condition

A number of changes in the definition of the condition of gender dysphoria, previously generally referred to as gender identity disorder, have been made in the most recent version of the Diagnostic and statistical manual of mental disorders.13,14 According to the updated definition, gender dysphoria is a condition which lasts for at least 6 months. A child must feel, and must verbalise, a strong desire to be of the other gender.14 In diagnostic terms, there is a strong, clear and persistent difference between the individual’s expressed and or experienced gender and the gender that others would assign her or him. Due to the mismatch between biological sex and perceived identity, those with gender dysphoria may experience profound psychological and physical tensions, and may have difficulties with socialisation. Consequently, it is common for those with gender dysphoria to have psychological symptoms including anxiety and depression, to self-harm, and to have suicidal ideation.15 The condition is not characterised by genetic, anatomical or hormonal abnormalities.16 When gender dysphoria intensifies with the onset of puberty, it will seldom subside.17

Treatment for gender dysphoria involves two stages of hormonal therapy, accompanied by psychological treatment that commences well in advance.18 Stage 1 of treatment involves administration of hormones such as gonadotropin-releasing hormone analogues, to prevent the onset of puberty in the child’s biological sex, and has been administered to children as young as 10 years old. Stage 1 treatment is reversible, as puberty in the child’s biological sex will continue if the treatment is stopped. The second stage of treatment is administered when the child is slightly older — around the age of 16 years. Stage 2 treatment involves, for example, the administration of oestrogen or testosterone for the purpose of encouraging the development of physical characteristics in the sex with which the child psychologically identifies. The effects of stage 2 treatment are more serious than the first and are considered to be irreversible.

Subsequently, surgery for gender reassignment can occur, if required, usually once the individual is an adult (surgical intervention that is contemplated before a child reaches 18 years of age would require additional court approval). Once diagnosed, early treatment for gender dysphoria appears to optimise psychological and social development, as well as subsequent modifications to the child’s physical appearance.18

Legal principles relevant to consent for treatment of gender dysphoria in children

Consent and special medical procedures

A child’s parents generally have power to consent to their child’s medical treatment. Under s 61C of the Family Law Act 1975 (Cwlth), each parent of a child aged under 18 years has parental responsibility for the child. Parental responsibility is defined in s 61B to include “all the duties, powers, responsibilities and authority which, by law, parents have in relation to children”, and this includes the right to consent to the child’s medical treatment in most cases (Box 1). This right must be exercised in accordance with a child’s best interests, and s 60CC outlines the factors that a court will consider when determining these.

This general parental power has limits. Notably, in the landmark decision of Marion’s case,19 the High Court of Australia referred to key principles to explain why some medical procedures fall outside the scope of parental consent, and instead require court approval. The High Court held that the parents of an intellectually disabled girl were unable to consent to a non-therapeutic sterilisation procedure. The non-therapeutic nature of the treatment was emphasised as a reason for requiring court authorisation, together with the procedure being considered to be major, invasive and irreversible (Box 1). Court approval was seen as a necessary safeguard.22

In special medical procedures, authorisation can be granted by the Supreme Court in its parens patriae jurisdiction, or by the Family Court under the Family Law Act. Section 67ZC provides the Family Court with the authority to make orders relating to the welfare of children, which includes special medical procedures. The Family Law Rules 2004 complement s 67ZC. In particular, rule 4.09 sets out the process for providing evidence to satisfy the court that the medical procedure is in the child’s best interests. The factors set out in the Family Law Rules closely follow the list of matters articulated by Nicholson CJ in Re Marion (No 2) (1994) FLC 92-448.

Authorisation for medical treatment: who can consent, to what, and why

In 2004, the Family Court in Re Alex determined that treatment for childhood gender identity disorder (as the condition was then described) was non-therapeutic and fell outside the boundaries of parental consent; it was a special medical procedure requiring court authorisation.1

Since 2004, an increasing number of applications have been made to the Family Court concerning treatment for gender dysphoria.2–11 This indicates not only the relevance of the issue to patients, clinicians and the community, but it may also suggest a level of unmet clinical need. In a series of recent decisions, the Family Court has adopted a different approach to Re Alex in classifying treatment for gender dysphoria as special. This has reshaped the ethical, clinical and practical basis for making decisions regarding stage 1 treatment. It has also resulted in a significant change to the basis for stage 2 treatment. The key developments are as follows.

In 2013 in Re Lucy,8 it was held that treatment for gender dysphoria is therapeutic treatment because it is administered primarily to ameliorate a psychiatric disorder. The court also held that parents are lawfully permitted to consent to stage 1 treatment, as it is reversible. The same conclusion was reached several weeks later in the case of Re Sam and Terry,9 which reiterated that stage 1 treatment carried only a low risk of error from misdiagnosis and did not present grave consequences. However, in both decisions it was held that stage 2 treatment requires court authorisation because of its irreversible effects and the significant risk of making a wrong decision about a child’s present or future capacity to consent. The consequences of stage 2 treatment were noted to be particularly grave, as physical changes would result from the hormone therapy in line with the change in gender. The court concluded that the correct approach to determining whether court authorisation is required involves not only classifying the treatment as therapeutic but also assessing its potential consequences in the terms described by the High Court in Marion’s case (Box 1).

After these two decisions by single judges, the Full Court of the Family Court heard an appeal in Re Jamie10 in 2013 concerning parental consent to treatment for gender dysphoria. This decision is important as it has higher precedential value than the single judge decisions, binding future decisions by lower courts. The Full Court affirmed the position adopted in Re Lucy and Re Sam and Terry, holding that parental power to consent to the child’s medical treatment extends to stage 1 treatment for gender dysphoria, while court authorisation is required for stage 2 treatment.10 The court’s decision centred on the reversibility of stage 1 treatment and the irreversibility of stage 2 and was therefore clearly underpinned by the factors outlined by the High Court in Marion’s case (Box 1). The decision of the Full Court in Re Jamie was followed in November 2013 in Re Shane.11

Parents can therefore lawfully consent to a child’s stage 1 treatment for gender dysphoria. This is consistent with existing legal principles concerning parental authority and promotes autonomy and beneficence for the child. It is also logistically superior for clinicians, parents and children, rather than having to seek court authority with attendant cost, delay and inconvenience. However, stage 2 treatment for gender dysphoria must still be approved by a court, despite being regarded as therapeutic.10 On one view, this is an unnecessary incursion into parental power, which normally extends to therapeutic treatments. On another view, there is value in the court retaining its power to authorise stage 2 treatment as a procedural safeguard, because of the complexity of this condition and the relevance of the principles articulated in Marion’s case (Box 2).

Decision making by mature minors in relation to special medical procedures

There is a further important aspect of the decision in Re Jamie. The principle of Gillick competence (approved by the High Court in Marion’s case) was considered by the Full Court of the Family Court in Re Jamie to determine whether a Gillick-competent minor could consent to stage 2 treatment and, if so, by what mechanism (which may also extend to circumstances where legislation provides the minor with a right to make the decision for him or herself, such as in South Australia’s Consent to Medical Treatment and Palliative Care Act 1995). The Full Court determined that a Gillick–competent minor is able to provide consent to stage 2 treatment. However, Bryant CJ imposed the requirement that the parties make an application to the court for determination of whether the child is Gillick competent.

This is a significant change in principle, enabling children deemed competent by the court, to consent to this type of medical treatment. Recognition of the mature minor’s right to consent is a sound development, sitting squarely with the fundamental legal principle in Gillick12 and being ethically consistent with promoting the autonomous wishes of a full moral agent. Additionally, it reposes the decision about the child’s competence in the court, whereas medical practitioners are ordinarily responsible for determining the minor’s competency. This aspect of the decision was also confirmed in the subsequent case of Re Shane.

Conclusion

The recent case law developments concerning treatment for gender dysphoria confirm that parents are lawfully able to consent to the first stage of hormonal treatment on behalf of their children, but that court involvement is required as part of the consent process for stage 2 treatment. In addition, when a minor possesses a sufficient understanding of the nature and consequences of stage 2 treatment, she or he has legal capacity to consent to that aspect of treatment, but the finding of competency must be made by a court.

The growth in applications for approval to treat gender dysphoria suggests a level of unmet need — a phenomenon also apparent in the United States.23 The new legal landscape in Australia for treatment for gender dysphoria is therefore of current, and growing, importance for practitioners and individuals with this condition. Increased awareness of treatment possibilities, the benefits of early intervention, and of the legal framework, would be beneficial.

1 Established principles relevant to determining whether a form of treatment is regarded as a special medical procedure

In Marion’s case,19 it was held that court authorisation must be obtained in circumstances where a procedure performed on a minor is regarded as non-therapeutic, and where:
- there is a significant risk of making the wrong decision without court involvement;
- the procedure in question has particularly grave consequences;
- the procedure is irreversible and invasive; and
- there is potential for conflict in terms of the interests of the parties involved (eg, parents, clinicians and patient).
Case law has established that routine or necessary medical care concerning children falls within the ambit of parental decision making when the treatment is intended to serve a therapeutic purpose.5 This is so even in cases where grave consequences may flow from the provision of such medical care20 or when the medical treatment is regarded as experimental.21

2 Do recent cases concerning treatment for gender dysphoria change established principles relating to special medical treatments?

Previous Family Court decisions have allowed parents to consent to serious, invasive and irreversible medical procedures where there is a potential therapeutic benefit (Box 1). Recent jurisprudence concerning treatment for gender dysphoria has determined that hormonal treatment for the condition is therapeutic; a conclusion that is presumably applicable to both stages of treatment. However, court approval is required for stage 2 treatment because of its irreversible and serious consequences.
The approach adopted in recent cases appears to depart from the principles set out in Marion’s case,19 which regard therapeutic interventions as falling within the realms of parental consent (Box 1). However, based on the reasoning in recent cases,8–11 classification of a specific treatment as special does not appear to rest solely on the therapeutic–non-therapeutic distinction, but on an assessment of all of the factors outlined in Marion’s case. Where there is concern about the nature and effect of a particular treatment, the law may nevertheless impose a requirement to obtain court approval, even where the treatment is regarded as therapeutic. Australian courts may later develop new categories of special medical procedures or interventions, which might include other types of therapeutic treatment. However, at present there are a number of established categories of special medical procedures, and parental consent alone is not sufficient for these different categories of treatment.

Global health with justice

ALTHOUGH the title of Gostin’s latest book, Global health law, may suggest a dry legal tome, it is, in fact, a highly readable exploration of the major issues and debates in the field of international health policy and governance. For those new to the field, Gostin offers an insightful overview of the overarching legal and policy regime and key institutional actors. However, the book is not a neutral primer in the basics of health law. Rather, Gostin’s ultimate goal is prescriptive: he sets forth in Chapter 1 his vision for “global health with justice” as requiring a more equitable distribution of health resources than the current status quo. In turn, much of the book is devoted to making the case for the political, legal and institutional reform that would be necessary to achieve this end.

“Global health law” is not a clearly defined set of legal instruments — rather, it includes both “hard” law (treaties that are binding on state parties) and “soft” law (non-binding agreements by states). Given this complex legal landscape, as well as the fact that much of the relevant legal architecture does not specify concrete obligations for state parties, Gostin takes a more expansive approach to the field. He examines not only international legal frameworks and relevant agreements, but also good governance practices for key institutions, such as the World Health Organization, as well as diverse stakeholders in philanthropy, business and civil society.

Gostin covers a great deal of ground — from the lack of political will at the WHO, to human rights, and the impact of the current international trade and intellectual property regimes on health outcomes. He concludes with a series of case studies on a diverse set of health problems. While this approach inherently eschews a certain degree of depth on a number of issues, it is valuable in that it provides readers with a comprehensive understanding of the multiple intersecting factors — social, legal, political and economic — that shape international health policies and processes.

Ultimately, Gostin’s case for an urgent need for global health with justice is compelling. The final chapter highlights the opportunity for advocates and policymakers to capitalise on current international attention on health to push forward two new initiatives: a proposal for a binding international “Framework convention on global health”; and a multilateral treaty to incentivise research and development based on universal need rather than profit. If successful, either would be a major step forward in strengthening the global health legal framework.

Should the legal age for buying alcohol be raised to 21 years?

In reply: We disagree with the points raised by Lindo and Siminski. All systematic reviews show harm associated with lowering the purchasing age and reduction in harm from increasing it. We stand by our decision to emphasise findings published in peer-reviewed journals. They cite their non-peer-reviewed New South Wales study to claim that reaching the legal age of 18 years for purchasing alcohol did not increase serious motor vehicle accident risk. However, their comparison to novice drivers aged 17 years is flawed, as inexperienced drivers in their first year are at their highest lifetime risk of vehicle accidents. To support their criticisms of New Zealand research, they cite one non-peer-reviewed report. Our conclusions are based on two independent peer-reviewed studies, supported by additional studies,1 including recent evidence of long-term negative effects of the New Zealand law change2 not confined to traffic injury.3

They claim that we ignore illicit drug substitution studies showing that up to 2% of adolescents in the United States use cannabis and then change to alcohol at 21 years of age, when they can legally purchase it. However, these effects are inconsistent across models,4 and some studies report no effect.5 In contrast, the epidemiological trend and cross-national comparative findings that we cite demonstrate that the US age-21 laws have been associated with robust reductions in all forms of substance use, with 69% of US adolescents being abstinent.6

Anomalous warning labels on alcoholic energy drink cans

To the Editor: Despite longstanding calls for mandatory evidence-based warning labels on alcoholic beverages or at point of sale,1 they remain elusive and are actively resisted by industry groups.2

There is widespread ignorance of the current Australian guidelines to reduce health risks from drinking alcohol3 as well as the recommended daily limits for consuming highly caffeinated energy drinks. In high enough quantities, caffeine is toxic; consequently, some advisory labelling is already mandated for these controversial “soft” drinks.4 These labels are often difficult to find, and if the caffeine is from guarana only, a statement that the drink contains caffeine is the only warning required. This has resulted in anomalous and confusing labelling on cans of the even more contentious alcoholic energy drinks5 — such that consumers could be forgiven for thinking the alcohol component is not as potentially injurious to their health as the caffeine.

Based on caffeine content, labelling on cans that also contain between 1.3 and 1.9 standard drinks of alcohol advises a limit of two cans per day, which equates to a daily intake of between 2.6 and 3.8 standard drinks of alcohol. This exceeds the limit recommended in the Australian guidelines — two standard drinks per day — for reducing the risk of long-term damage to the body from alcohol.3 The advice on brands at the higher end of this range barely complies with the recommended limit of four standard drinks per day for preventing acute harm.

With such confusing advice, the general public cannot be expected to understand or follow recommended limits for either alcohol or caffeine consumption. Packaging should display unambiguous and prominent warnings, including whichever is the lower of the two daily use limits calculated according to guidelines on alcohol and caffeine intake. A second maximum might be given for usage in a single session. Public health messaging needs to be clear and consistent, and an overhaul of both alcohol and caffeine advisory labelling is long overdue.

Collaboration between the coroner and emergency physicians: efforts to improve outcomes from aortic dissection

Following the recommendations in 2006 of the Victorian Parliament Law Reform Committee,1 the Coroners Act 1985 (Vic) was amended. The revised Coroners Act 2008 (Vic)2 included “prevention”, to explicitly recognise the coroner’s role in public health and safety. The Law Reform Committee report identified the need for a multidisciplinary team to assist coroners to fulfil their prevention mandate. The Coroners Prevention Unit (CPU), within the Coroners Court of Victoria (CCV), was established in 2008, comprising personnel from medicine, nursing, law, public health and social sciences. The CPU reviews cases to identify prevention opportunities and assess the adequacy of health care diagnosis and treatment proximate to death. The CCV annual report for 2011–12 shows that about 10% of deaths reported to the coroner were referred to the CPU, including those resulting from suicide, homicide and unintentional injury, and those that occurred in a health care setting. The CPU reviews statements from family, friends and witnesses, medical records, forensic reports, statements from clinicians and expert opinions, before preparing advice regarding identified risks and protective factors to the coroner, who may then make recommendations for government and non-government organisations with or without an inquest. The overriding aim is to identify prevention opportunities, particularly any system changes that might prevent future similar deaths.

The death of an older woman from acute aortic dissection (AAD) at home, following discharge from a hospital emergency department (ED) after investigation for chest pain, led the coroner to review similar cases over recent years. After considering identification and review by the CPU of previous and subsequent deaths, expert opinion, and advice about the medicolegal challenges posed by such cases,3 the coroner concluded that a dialogue with Victorian emergency physicians (EPs) might enable opportunities for prevention to be better diffused.

Through this article, we aim to improve clinicians’ understanding of coronial processes and increase awareness of diagnostic difficulties in AAD by reporting the case, investigation and the roundtable discussion convened by the coroner between representatives of the CCV and Victorian EPs.

Case report

A 74-year-old woman woke after midnight with severe, sharp, left scapular pain radiating to both jaws, with nausea and sweating. She had a history of gout and hypertension, and was taking warfarin, allopurinol, telmisartan, felodipine and atenolol. Her condition was initially assessed by paramedics as possible ischaemic chest pain, although thoracic aortic dissection was recorded as a second possibility. The patient was monitored and an intravenous line inserted. Aspirin was withheld because of possible thoracic AAD. A mobile intensive care ambulance team continued management. An electrocardiogram (ECG) showed atrial fibrillation (heart rate, 44 beats/min) with T-wave inversion in lead I. Aspirin 300 mg and morphine in aliquots to 15 mg were administered, and the patient arrived in the ED at 01:07, 49 minutes after pain onset.

In the ED, a triage category 2 was allocated. Triage assessment noted chest pain starting in the scapular region and radiating to the jaw, but now also radiating all over the patient’s body. Nursing observations were a pulse rate of 45 beats/min, blood pressure of 175/79 mmHg, and no pain from 18 minutes after arrival in the ED. The doctor assessed the patient 103 minutes after arrival, noting sudden sharp pain (score, 10/10) in the left upper back and radiating to the jaw, with nausea. ECG showed atrial fibrillation with old inferior ST segment changes; troponin level was 0.02 µg/mL (reference interval, < 0.03 µg/mL); and international normalised ratio was 2.3. The diagnosis was musculoskeletal pain. A chest x-ray showed a markedly enlarged heart, and the repeat troponin level was 0.03 µg/mL. The patient was discharged at 07:30 for an outpatient stress ECG, arranged through her general practitioner.

At 13:00 that day, an ambulance was called when the patient was found collapsed and unresponsive at home. Despite resuscitation attempts, she was pronounced deceased. The death was reported to the coroner. The autopsy carried out at the Victorian Institute of Forensic Medicine showed “a posterior inferior wall tear of the aorta around the arch … [and] a second tear … just above the aortic valve(s)”.

The coroner referred the case to the CPU, which recommended statements from treating clinicians and expert emergency medicine opinion be obtained. The expert found a failure to convey the concerns of the first paramedic crew about the possibility of AAD to hospital staff, and that AAD had not been seriously considered by treating clinicians in the ED, despite the suggestive presentation. The expert believed that the outcome may have been different if surgery could have been organised before rupture, while acknowledging time constraints.

Coroner’s round table

After the inquest, the coroner convened a roundtable discussion on AAD, inviting senior EPs from Melbourne metropolitan hospitals. Seventeen EPs and directors of emergency medicine assembled at the CCV in August 2013, with the coroner, the coroner’s registrar, two EPs and two nurses from the CPU, and representatives of the Police Coronial Support Unit. A descriptive statistical overview and case summary was circulated before the meeting, outlining the frequency of reported deaths from AAD, with health service contact within 3 months of death, from 2010 to 2012.

The round table was chaired by a CPU EP (G A J), who requested participants’ cooperation in reaching conclusions about improving case detection of AAD in Victoria. It was emphasised that the purpose was to gather expertise, without intention to find fault or blame, in a safe environment where any comment or contribution would be welcomed. The coroner described the circumstances, the problems with case detection, and the hope that the combined expertise and experience of the group might identify system changes to improve outcomes. This was followed by an overview of AAD by the EP who had provided expert opinion in the case, along with recommendations.

Robust discussion followed. It was acknowledged that it is imperative for clinicians not to miss the vastly more common condition, ischaemic heart disease, also a potentially lethal disease, and that there are sensitive, readily available diagnostic tests that reliably enable exclusion of that diagnosis. While AAD is mostly excluded by computed tomography (CT) scanning, it was noted that CT is not always easily available and is potentially harmful due to radiation and risks from contrast media. Therefore, although investigating and excluding AAD more often with CT scanning might improve detection, this might be counterproductive in producing more harm in the long term, given the rarity of the disease.

While many people with AAD present without classical features, making detection difficult, it was agreed that the diagnosis is often simply not considered, and this is where preventive measures may be particularly valuable.

Important system issues identified included seniority of staff assessing people presenting with chest pain, and the use of chest pain and acute coronary syndrome (ACS) care pathways. Supervision has largely been provided through the development of emergency medicine as a specialty in Australia, but there may still be opportunities to improve the degree of supervision, particularly in smaller hospitals and after hours. The group concurred that ACS care pathways may be having a negative effect on detection of AAD, noting the importance of exclusion of other serious diseases, including AAD, both at the beginning and the end of such pathways. Senior clinician review before discharge, with consideration of rare serious causes of chest pain, was recommended as a routine component.

Similarly, implementation of time-based performance targets in Australian EDs through the National Emergency Access Target may be compromising the care of people with AAD and other uncommon diseases.4,5 Imperatives to discharge patients within 4 hours may limit opportunities for considered reflection of unusual causes of presentation. While ED targets aim to improve overall hospital bed management to reduce overcrowding in EDs, they may create problems, such as inadequate time to reflect on rare or complex presentations and delays to timely inpatient review, resulting from the rapid transit of ED patients to hospital wards. ED physicians present agreed that ED targets should not be allowed to affect patient-centred care and decision making, with greater use of short-stay medicine wards to allow time for diagnostic consideration and investigation.

Clinical features of importance included focused history taking in the diagnosis of AAD.6,7 Risk factors should be sought; in particular, a history of hypertension, Marfan syndrome or other connective tissue disease, atherosclerotic heart disease, and cardiovascular surgery, especially aortic valve or aneurysm repair. History should focus on onset, severity and nature of pain. Pain is typically sudden, severe and maximal at onset, often described as worst-ever, often in the back or chest, and severe and sudden enough to wake someone from sleep. Pain may radiate to the neck, throat, jaw or back. However, although these features may suggest AAD, their absence does not exclude the diagnosis, and when no other reasonable diagnosis is found, AAD should be considered and excluded.

It was noted that AAD was similar in some of these features to subarachnoid haemorrhage (SAH), albeit in a different site. It was suggested that EPs should teach that AAD is “the SAH of chest pain”. In the assessment of headache, junior doctors now generally present to senior clinicians first by reporting whether red flags for SAH were present, before continuing to case details. Participants suggested that this should become routine in chest pain assessment, that there should be a cultural change in EDs so that junior staff would start presenting by reporting red flags for AAD, and making a decision on CT scanning early. Thus, if a patient has risk factors and has developed very sudden onset of suggestive pain, then AAD should be considered and investigated alongside testing for ACS using ECG and troponin assay.

Examination should include comparison of blood pressure in each arm; a significant differential suggests AAD, although its absence is not sensitive enough to exclude the diagnosis. A new aortic regurgitation murmur is strongly suggestive. Neurological deficits in people with chest pain suggest AAD involving the carotid arteries and should prompt AAD exclusion.

Preliminary testing for AAD normally includes a chest x-ray and tests to exclude ACS, which may also be abnormal in AAD. A widened mediastinum on chest x-ray should never be dismissed, as it strongly suggests AAD. Additionally, D-dimer testing may be helpful; virtually all patients with AAD have an elevated D-dimer level.8 A meta-analysis concluded that a negative D-dimer result can identify patients not requiring imaging, given its sensitivity of 97% and negative predictive value of 96% at a level of < 500 ng/mL.9 An elevated D-dimer level can also raise the possibility of pulmonary embolism, which may present similarly, and this differential diagnosis may also need to be considered.

Overall, the group considered that careful risk assessment is required, using these clinical features, giving due weight to the assessment of paramedics and nursing staff. Patients at significant risk should be reviewed by a senior clinician, and the risks and benefits of CT considered. Barriers to timely access to CT scanning — the imaging modality of choice,10 particularly after hours — should be removed if possible. Some sites have access to potentially less harmful investigations such as magnetic resonance aortography or transoesophageal echocardiography.

However, the group noted that risk assessment for AAD cannot occur without the clinician having at some point considered its possibility, and that this may be where the greatest preventive gains can be made. Education programs run by Victorian hospitals and curricula of training organisations such as the Australasian College for Emergency Medicine need to highlight the importance of diagnosis of AAD, particularly vigilance for suggestive features in people with chest or back pain. Previous education has succeeded in bringing the exclusion of SAH and bowel infarction to the centre of discussions about people presenting with headache or abdominal pain, and a similar education effort is required with AAD in relation to chest or back pain.

The group suggested further research. In particular, emergency clinicians may consider developing a risk score for AAD, incorporating the main clinical features suggestive of AAD (history, examination findings, chest x-ray, D-dimer level), in line with multisociety guidelines, emphasising the importance of estimating a pretest probability,11 where a certain score prompts a CT scan. It was suggested that the Victorian Department of Health Emergency Care Improvement and Innovation Clinical Network may assist in development and validation of such a score, which may be sensitive enough to rule out clinically many suspected cases of AAD and would ensure that the condition is considered more frequently.

The meeting lasted 2.5 hours; those attending felt that it had been very important, practically and symbolically. The coroner had important consensus information on which to base findings (the inquest finding is available at http://bit.ly/1nnpH9V), and many EPs resolved to take the recommendations to departmental education sessions. Recommendations from the meeting were drafted, and a lay summary prepared for the family of the patient. Some months later, the chair of the meeting presented to an annual meeting of ED clinicians on how coronial information can enhance clinical practice in AAD detection. The State Coroner suggested further dissemination of these key recommendations via journal publication, to reach the widest possible target audience and help close the prevention loop. Symbolically, the round table represented an important collaboration between the CCV and the medical profession.

Conclusion

Many clinicians have felt some apprehension in their interaction with the CCV, often triggered by their own involvement in death investigations. This innovative interaction between the CCV and emergency clinicians provided an opportunity for focused dialogue in an atmosphere of collegiality and mutual assistance. Both the CCV and clinicians are likely to benefit from the experience, and further forums are planned with EPs and other medical specialists depending on the circumstances of the case. Public health and the wellbeing of families of the deceased are likely to be enhanced by such an approach.

Withholding and withdrawing life-sustaining treatment in a patient’s best interests: Australian judicial deliberations

What should doctors do if they cannot reach agreement with a family about life-sustaining treatment for an adult who lacks decision-making capacity? Effective conflict-resolution strategies generally resolve these disputes and intractable conflict is rare.1–3 But when such disputes occur, they are stressful for clinicians, families and patients. Health professionals can experience moral distress, with significant personal and professional impact.1,4 In such cases, or where there are concerns about the lawfulness of proposed conduct, medical practitioners or their hospitals may need to seek a court or tribunal opinion.1,5,6 Concerned family members may themselves seek a judicial intervention.

Although all Australian states and territories have adult guardianship tribunals,7 Supreme Courts retain an important role in this field. They have jurisdiction to resolve end-of-life disputes, and their decisions provide authoritative guidance for guardianship tribunals and clinicians in their deliberations. Supreme Courts apply the test of whether the proposed treatment is in the patient’s “best interests”, and this term (or analogous concepts) is also one of the criteria applied by guardianship tribunals.7 Yet, what “best interests” means is contested.8,9 In this article, we identify six key themes from the developing body of Supreme Court jurisprudence about life-sustaining treatment decisions for adults who lack capacity (Box 1).

Supreme Court case law concerning end-of-life decisions

We are aware of only 16 Supreme Court decisions in Australia that concern the withholding or withdrawal of life-sustaining treatment from an adult who lacks capacity. Of these decisions, the issue of the patient’s best interests was directly relevant in eight cases (Box 2). The other eight cases focused on other issues, such as the validity of an advance directive and interpretation of guardianship legislation.

To determine trends in judicial reasoning, we thematically analyse the eight cases involving a determination of best interests. Most of these cases involved proposed withdrawal of treatment. The law generally treats withholding and withdrawing treatment as equivalent.10 However, situations involving withdrawal are possibly more likely to lead to family conflict, because decisions to stop treating, as opposed to not offering treatment, are more prone to be construed by families as more causally connected to death.11

Theme 1: Futile treatment is not in a patient’s best interests

The concept of “futility” is contested.12,13 We do not add to that debate here, but instead highlight the link made in judgments between futility and best interests. In three of the eight decisions (Melo, Herrington and Messiha), the Supreme Court explicitly stated that where treatment is futile, it would not be in the patient’s best interests to commence or continue with it. In Melo and Herrington, the court did not explain why the treatment was futile. Instead, the medical practitioners’ assessments of futility were relied on to inform the best interests assessment. In Messiha, it was held that treatment would be futile because continuation of life-sustaining measures would confer no real prospect of recovery.

Two other cases also clarify the role of futility in these deliberations. In Justice Health, the court stated that active treatment was futile because it would “achieve no more than a short prolongation of life without quality” and therefore did not need to be provided. By contrast, in JT, the court found that treatment was not futile (the patient was not dying) and so it would not authorise non-treatment.

The courts have expressed the view that futile treatment will not be in a patient’s best interests.14 But what justifies labelling treatment as futile? Courts have generally relied heavily on medical determinations of futility. Despite ongoing debate regarding this concept, medical opinion is important to judicial determinations.

Theme 2: Overly burdensome treatment is not in a patient’s best interests

In the end-of-life setting, decisions may be made to commence or continue invasive forms of treatment such as assisted ventilation or to progress to palliative treatment. Supreme Courts have held that life-sustaining treatment that creates excessive burdens for a patient, relative to possible benefits, is not in the patient’s best interests (Slaveski). This includes considering potential pain or indignity that the patient may suffer through receiving treatment (Herrington). Treatment may still be burdensome even where the patient is unconscious and unaware of these burdens (Messiha).

Theme 3: Quality of life is relevant

Quality-of-life considerations have not been explicitly acknowledged by the Supreme Court as relevant to patients’ best interests, apart from the brief mention in Justice Health noted above. Nevertheless, in the remaining seven cases, we contend that quality of life has been relevant when assessing the patient’s best interests. This has at least occurred implicitly through an examination of a person’s prognosis as part of a best interests assessment.

To illustrate, in the four cases where treatment was withheld or withdrawn, the patients had profound brain injury with no prospect, or very little prospect, of neurological recovery (Slaveski, Melo, Herrington and Messiha). By contrast, the three remaining cases where life-sustaining treatment was commenced or continued involved patients in better neurological states (Northridge, JT and Astill). Although not couched in terms of quality of life, the capacity to engage meaningfully with the world seems to be relevant. It appears that, at least indirectly, judges consider how the proposed treatment will affect quality of life.

Theme 4: The views and wishes of the patient (and perhaps family) are relevant but not determinative

When assessing a patient’s best interests, Supreme Courts have given some consideration to the views and wishes of the patient and family members. This was given at least some attention in three cases, although such views were not influential on the courts’ final conclusions.

In Astill, a woman’s “no blood” advance directive failed because it did not comply with formalities required by Queensland legislation. The court still considered her views but concluded that there was no evidence to suggest that they remained current when the case was heard. Further blood transfusions were authorised despite the previous directive. In Herrington, the court considered the views expressed by the patient (which were communicated to the court by the patient’s partner), stating that she would have wanted continued treatment. Ultimately, however, treatment was universally regarded by the medical evidence as futile and was not provided. In JT, the court acknowledged the patient’s views as a relevant factor, but they were disregarded because they were “the product of delusional and irrational thought”.

The cases also demonstrate several ways that the views and wishes of family members can be considered in the best interests assessment. First, family can provide information relating to the patient’s values or wishes about proposed treatment (Herrington and Astill). Second, family members may have their own views about the patient’s best interests. In Astill, the judge observed that he had taken into account views expressed by all family members when determining the patient’s welfare. The other seven cases did not formally acknowledge the views of family members as being directly relevant to the best interests assessment; however, some made reference to family views and preferences (Slaveski, Melo, Herrington, Messiha and Northridge). Finally, family members have expressed views to the court about the patient’s level of responsiveness and awareness of their surroundings. Thus, in some cases, the family challenged the medical prognosis to suggest that the patient had responded or engaged in a way that indicated an improved state. In all such cases, the court preferred the views of the medical team, concluding that continued treatment was not in the patient’s best interests (Melo, Herrington and Messiha).

Theme 5: The interests of others are not relevant

Supreme Courts have not regarded the interests of others (aside from the potential relevance of the views of the family members outlined above) as being relevant to the best interests assessment. For example, in Northridge, the court observed that “the exercise of the parens patriae jurisdiction [the court’s inherent jurisdiction that allows it to make decisions concerning people who lack capacity] should not be for the benefit of others … including a health care system that is intent on saving on costs”. Similarly, in JT, the potential distress to health professionals from providing forced treatment did not influence the assessment of what was in the patient’s best interests.

Theme 6: Judicial deference to the medical profession

Supreme Courts have usually deferred to medical opinion when assessing best interests. In some instances (eg, Melo and Herrington), the courts did not question the conclusion reached by medical practitioners that treatment was futile; however, as emphasised in Messiha, the final assessment rests with the court. In Northridge, medical decision making was found not to be clinically justified, and the New South Wales Supreme Court was critical of the medical opinion provided.

Conclusion

Supreme Court jurisprudence in Australia on end-of-life treatment is still developing, but there is enough case law to provide useful guidance about assessing a patient’s best interests. This guidance is significant both for future Supreme Court decisions and those made by guardianship tribunals. Although only a minority of cases require judicial intervention, legal considerations remain relevant for the larger group of difficult decisions that occur each day, because medical decisions are made in the “shadow of the law”.15 Our analysis highlights the themes that emerge from judicial decisions. Although every situation has unique circumstances, these factors may be useful for medical practitioners contemplating withdrawing or withholding treatment from incompetent adult patients.

A best interests assessment not to treat can be justified at law if there is a clear basis for deciding treatment is futile (despite this term’s subjectivity) (theme 1), or if the patient is extremely unlikely to recover consciousness (theme 3). Treatments that are particularly invasive or burdensome relative to their benefits will also not be in a patient’s best interests (theme 2). Decisions should take account of patient views, where known (theme 4), and those of family members. However, the interests of an overstretched health system are not relevant (theme 5). Finally, where a medical view concludes treatment should not be provided, this is likely to be supported by the court, but it should be corroborated, for example, with a second opinion (theme 6).

1 Six key themes from Supreme Court jurisprudence of “best interests” for decisions about life-sustaining treatment for adults who lack capacity

Futile medical treatment is not in a patient’s best interests.
Treatment that is overly burdensome is not in a patient’s best interests, even if the patient is unconscious or unaware of treatment burdens.
Courts have generally not engaged expressly in quality-of-life assessments, but they remain relevant for determining best interests when considering the patient’s medical condition and prognosis.
A patient’s wishes and values (gleaned when the patient was competent) are relevant to, but do not determine, his or her best interests. Family members’ views may also be relevant where they are reflecting a patient’s wishes, and perhaps also when reflecting their own wishes, but these views are not conclusive in determining a patient’s best interests.
The interests of other people and organisations (including the wider health system) are generally not relevant when determining a patient’s best interests.
Courts have generally deferred to medical practitioners’ opinions about treatment decisions, even when the patient’s family has strongly opposed them.

2 Supreme Court cases on best interests and life-sustaining treatment for adults who lack capacity

Application of Justice Health; Re a Patient (2011) 80 NSWLR 354; [2011] NSWSC 432 (Justice Health)

The New South Wales Supreme Court declared that life-sustaining treatment for a prisoner with end-stage lung cancer, who lacked capacity and was expected to live for only a matter of days or weeks, was futile and need not be given.

Slaveski v Austin Health [2010] VSC 493 (Slaveski)

The Victorian Supreme Court held that continuing artificial ventilation for a 71-year-old man in a coma from a catastrophic stroke was burdensome and not in the man’s best interests. The medical team did not need to provide treatment despite family requests.

Australian Capital Territory v JT (2009) 4 ACTLR 68; [2009] ACTSC 105 (JT)

The ACT Supreme Court held that artificial nutrition and hydration was not futile for a 69-year-old man with a psychiatric illness manifesting in religious obsessions which led to extreme fasting. The court declined to make the declaration sought by the government that it would be lawful to stop this treatment.

Melo v Superintendent of Royal Darwin Hospital (2007) 21 NTLR 197; [2007] NTSC 71 (Melo)

The Northern Territory Supreme Court held that treatment for a 29-year-old man with catastrophic injuries sustained in a motor vehicle accident, including high-level fractures of the cervical spinal cord and brain damage, was futile. Despite family requests, the court did not require continued treatment.

In the Matter of Herrington; Re King [2007] VSC 151 (Herrington)

The Victorian Supreme Court declined to order that active treatment (including the administration of fluids) be continued for a woman with hypoxic brain damage who had been in a vegetative state for 6 months. It held that the medical team should progress with palliative care despite family request for more active treatment.

Queensland v Astill (unreported, Supreme Court of Queensland, Muir J, 18 January 2006) (Astill)

The Queensland Supreme Court ordered blood transfusions be given to a woman injured in a motor vehicle accident despite her possessing a “no blood” card. This card did not comply with formalities of Queensland legislation and so did not operate. Treatment was ordered to promote the patient’s welfare.

Messiha v South East Health [2004] NSWSC 1061 (Messiha)

The NSW Supreme Court held that active treatment for a 75-year-old man, who suffered severe brain damage after he collapsed at home and his brain was deprived of oxygen for 25 minutes, was futile, burdensome and intrusive and should not be continued. The court did not accept the family’s view that treatment was in the patient’s best interests.

Northridge v Central Sydney Area Health Service (2000) 50 NSWLR 549; [2000] NSWSC 1241 (Northridge)

The NSW Supreme Court reinstated active treatment for a man with brain damage following a drug overdose. The court held that the diagnosis that he was in a “chronic vegetative state” and the decision to withdraw treatment were premature, contrary to the hospital’s own guidance, and not in the patient’s best interests.