How did we get here?

20 MINUTE READ

from Luke’s Journal 2019 | Hot Topics #2 | Vol. 24 No. 1

As I look back over the last twenty-five years of euthanasia debate in Australia, I remember why I became involved in bioethical debate in this country.

In the 1990’s, as a palliative care registrar, I remember thinking that the public debate about end of life (EOL) care did not reflect what really happened, nor what was possible, in our care for dying patients. The bill before the Northern Territory (NT) parliament was not seriously considered a threat by its opponents due to problems in its construction, and it was a rude shock when it passed.

Australia became the first country in the world to legalise euthanasia when the Rights of the Terminally Ill (ROTI) Act was passed in 1995. Never underestimate the power of the champion, in this case Chief Minister of NT, Marshall Peron, who was deeply affected by the suffering experienced by a close relative before death. The Act became law in 1996 and its troubled path has been documented.¹ The ROTI Act was subsequently over-turned by Federal Parliament in 1997.

Apparently, one factor contributing to the overturning of the legislation was its impact on Aboriginal people, who make up 25% of the population in the NT. A report of a euthanasia education program commissioned by the NT government after the ROTI Act commenced, said that “the level of fear and of hostility to the legislation is far more widespread than originally envisaged… which makes one wonder about the public opinion polling that suggests high support among the NT public for the legislation. One imagines that phone polling doesn’t get to too many Aboriginal people.”² 

Since then, at least 30 bills have been debated and defeated across the country. One outcome of the brief legalisation of euthanasia in the Northern Territory was an increase in palliative care funding (palliative care provision had been particularly poor in NT). The arguments for legalisation of euthanasia and physician-assisted suicide (EPAS) gradually focussed less on suffering as the potential of palliative care became known, and the need to allow mentally competent adults to choose the timing and manner of their own death became the focus. Meanwhile public support was documented consistently at levels above 50%. 

“If you need to spend so much time talking about ‘safeguards’, there must be something inherently unsafe about the practice.”

The polls which elicited the overwhelming public support for euthanasia tended to ask loaded questions. Take, for example, the single question in a 2009 Newspoll commissioned by Dying with Dignity: “If a hopelessly ill patient, experiencing unrelievable suffering, with absolutely no chance of recovering, asks for a lethal dose, should a doctor be allowed to provide a lethal dose, or not?”³ Note the leading and emotive wording, underlying presumptions and limited options of responding. 85% Australians, on this occasion, answered, ‘Yes’. Magelsen and colleagues found that framing effects, that is, effects on the respondents’ stated attitudes caused by question wording and context, do impact responses to public surveys on assisted dying.⁴ They concluded that survey results should be interpreted with caution.

It is obvious that parliamentarians have resisted many attempts to legalise EPAS in Australia. The main reason for this, according to my research, is that EPAS is difficult to regulate. Really, you can’t help feeling that if you need to spend so much time talking about ‘safeguards’, there must be something inherently unsafe about the practice. Five wide-ranging, government-sponsored inquiries in four different countries were held investigating the consequences of legalising euthanasia. Despite the inclusion of pro-euthanasia members, all reports concluded that such law could never be made safe from the possibility, if not the likelihood, of abuse.⁵ So, for the next decade, pro-euthanasia societies produced polls showing public support in Australia, bills were presented to parliament, and parliamentarians refused to pass them.

Then suddenly, things changed. A Federal Senate Inquiry into the Medical Services (Dying with Dignity) Exposure Draft Bill 2014 asked for submissions not on whether EPAS should be legalised, but how it should be legalised, describing assisted dying as a ‘medical service’ requiring regulation.

This approach was similar to that taken by the Victorian government, whose Ministerial Advisory Panel on Assisted Dying asking for submissions suggesting how to implement legal EPAS specifically stated that submissions arguing against legalisation would not be read.⁶ The Victorian Government modelled a new approach to end of life (EOL) care by holding an extensive Inquiry into EOL Choices in 2015. The report of the Legal and Social Issues Committee was published in 2016. It made 49 Recommendations for improvement of EOL care, and the final recommendation, that the Victorian government introduce a legal framework providing for assisted dying, was enthusiastically taken up.

As the Victorian government looked increasingly keen to legalise EPAS, a ruling in the Victorian Civil and Administrative Tribunal (VCAT) sounded an ominous warning. Euthanasia advocate and urologist Dr Rodney Syme had been found guilty by the Medical Board of Australia of breaching his legal and professional duties by assisting people to kill themselves, citing a case where he provided Nembutal to a patient with tongue and throat cancer. Syme argued his intention in providing Nembutal was solely to provide relief from distress to a patient who wanted to control his own death. Even though his means of providing that relief was to provide the means by which the patient could kill himself, Syme denied he had any intention of assisting the patient to commit suicide.

While not many people would argue that providing the means of suicide to a suicidal patient does not constitute assisting suicide, VCAT decided that Dr Syme did not pose a serious risk to persons and did not uphold the Board’s decision. They accepted Dr Syme’s suggestion that his action constituted palliative care, though I personally do not know any palliative care physicians who prescribe Nembutal to their patients.⁷

One of the troubling claims of Syme and the tribunal is that, by providing Nembutal to his patient with the information that it would end his life – that is, to relieve the patient’s existential suffering, foreseeing that it may have the unintended effect of assisting him to commit suicide – is analogous to that found in the administration of “terminal sedation”, as accepted in routine palliative care practice.

But this ignores the fact that the term terminal sedation, or palliative sedation, is used by different doctors for different practices. Some doctors use the term to describe their practice of relieving the patient’s symptoms (eg. severe dyspnoea) at the very end of life, with no impact on survival. Other doctors use the same term to describe their practice of deliberately hastening the patient’s death with an overdose of opioids or sedatives (yes, sadly I know this happens).

The former can be perfectly good clinical practice and is perfectly legal. The latter is neither and should be reported to the Health Care Complaints Commission. The situation is further complicated by the fact that many people, including doctors, think that therapeutic doses of drugs such as morphine inevitably shorten life, therefore reasoning that if the patient is receiving regular morphine at the end of life, it inevitably has contributed to the death.

This kind of practice has been labelled by pro-euthanasia advocates as ‘passive euthanasia’, who then argue that if we practice that kind of euthanasia, we should be able to use the other type of euthanasia – lethal injection, which they call ‘active euthanasia’. You see the problem. But it is all based on a myth that morphine shortens the life of the patient. In fact, there is a significant body of research showing that this is not the case, and that regular (appropriate) therapeutic doses of morphine and sedatives at the EOL may in fact increase survival.⁸

Around this time medical associations started to come under attack from minorities within their organisations who tried to lobby for official pro- or at least neutral stances towards EPAS. Confusion about position statements from the AMA, and other organisations ensued. The Australian and New Zealand Society of Palliative Medicine (ANZSPM) was challenged by a small number of individuals who objected to the anti-EPAS position statement, and the Australasian College of Physicians has been successfully challenged for trying to move from its opposition position without consultation with the membership. Watch this space.

“The suffering angle had resurfaced in the public debate, with the attempted demolition of palliative care as a viable alternative to EPAS legislation in view of the impotence of palliative care staff in the face of suffering at the end of life.“

The Victorian Government’s Ministerial Advisory Panel put forward a bill, and the debate was nasty. For example, medical practitioners working in Catholic organisations were attacked by a prominent journalist for intentionally withholding analgesia from patients in pain on the grounds that they thought that suffering was ‘good for them’.

Palliative care services were criticised for inadequately caring for the terminally ill. The suffering angle had resurfaced in the public debate, with the attempted demolition of palliative care as a viable alternative to EPAS legislation in view of the impotence of palliative care staff in the face of suffering at the end of life.

Let me be very clear. This debate was not about suffering. If it was about suffering it would not be occurring now, when we have more medical cures than ever before in human history. If it were about suffering, it would not be a debate that occurs primarily in western countries. If it were about suffering, we would not have had Victorian politicians calling for a cut in funding for Catholic hospitals, major providers of palliative care in that state, because they publicly stated that they would not cooperate with EPAS if a law were passed.

This debate is about autonomy – the right to make self-determining choices, in this case the right to choose the timing and manner of one’s own death. Coming face-to-face with one’s own death raises existential questions which many people in our society are ill-equipped to answer. They are afraid and want to control death – and the only way it can be controlled is by determining its manner and timing. In a society which has lost touch with the meaning of suffering, there is, understandably, a loss of the willingness to endure it. So many people now want to avoid the process of dying altogether. And if you thought this world was all there is, why wouldn’t you?

But, disturbingly, there are other factors driving the euthanasia debate. In my conversations with politicians it is obvious that there is a lot of unhappiness in Australian society regarding how doctors manage their dying patients. I know what they mean. Unnecessary treatment because no-one diagnosed impending death.

Inability to care for the patient in the dying phase. (I know of one medical school where there is more time in the curriculum given to delivering babies than palliative care. How much training did you have?) There are the blatant EPAS advocates who are known to provide the means if the patient is so inclined. I don’t know the details but some of my patients do. Then there’s that ‘morphine reflex’, where as soon as a patient is recognised to be dying, the morphine drip goes up. I used to ask on palliative care consults where the pain was, trying to understand this response. Families are concerned, and I don’t blame them. One politician told me that, even if he disagreed with EPAS, his constituents were demanding that something be done to regulate care at the end of life. In some ways we have only ourselves to blame.

“I know of one medical school where there is more time in the curriculum given to delivering babies than palliative care.“

Meanwhile the Victorian law passed after a marathon 28-hour debate in parliament at the end of 2017. At present, a committee is working out the details for the enactment of the legislation. It is due to become active on June 19, 2019. From that time, patients who have a life expectancy of less than six months, whose illness is incurable and causes intolerable suffering, are over 18 and live in Victoria will be able to request “voluntary assisted dying”. Mental illness is excluded as grounds for access to the law.

Victorian Premier Daniel Andrews consistently argued through his campaign that the new law is the safest and most conservative scheme in the world. The law is modelled on that in Oregon, USA, about which, supporters note, there is no evidence of abuse. That is true. But there is also no evidence that it is practiced safely. Because there is virtually no data collected by the Oregon authorities and what is collected comes from the prescribing doctor who may have met the patient only once, over a year before. There are medical journal articles, though, that record studies of patients who are depressed and not sent for psychiatric evaluation, as recommended by the legislation. One of the first patients to die under the legislation asked her own doctor for a lethal prescription and was refused. A second doctor also refused, saying she was depressed. At that point she contacted a pro-EPAS society who organised a referral to a co-operating doctor. A review of this case raises deep concerns about the ‘safeguards’ in place.¹⁰ Earlier this year, the Oregon Health Authority confirmed that it would allow a person who is not dying, but who has a chronic disease such as diabetes, to refuse treatment for the disease and thereby become eligible to be prescribed a lethal substance for the purpose of committing suicide on the grounds of a six-month prognosis.¹¹ And this is the safe model?

Whatever safeguards are in place now, they can always be watered down in the future. This was clearly stated by pro-euthanasia advocates during the Victorian campaign. And it may not take all that long. At the time the law passed, Dr Philip Nitschke, probably Australia’s most notorious euthanasia activist, had already complained that the law was too conservative.

I have been told that EPAS laws are inevitable. I don’t see why.

Internationally, most countries don’t allow it. And of those who do allow it, not all use doctors. Look at the capital punishment system in the USA – that doesn’t involve doctors. Particularly if this is all about autonomy, why do doctors have to be involved? Lawyers would do a better job working out who is legally eligible. And anyone can learn to give an injection. Personally, I am greatly in favour of separating EPAS from medicine, not only because it conflicts with traditional medical ethics, but also because by labelling it as a form of medical care, it is given a veneer of medical legitimacy that it doesn’t deserve. And besides, it’s hard enough getting people to accept a palliative care referral – what will happen if palliative care units start hosting the local euthanasia practice?

“What will happen if palliative care units start hosting the local euthanasia practice?“

What can you do? If you feel you do not really understand what this debate involves, I urge you to read through the CMDFA’s position statement on euthanasia.¹² If you would like extra and/or up-to-date information, please go to a website for medical professionals opposed to legalisation of euthanasia, Health Professionals Say No.¹³ You will also have the opportunity to publicly register your support of the position statement.

Euthanasia campaigns are active in Western Australia, Queensland, ACT and NSW at the time of writing. If you are a doctor, legal EPAS changes what is viewed as ‘standard practice’ for a registered medical practitioner in this country. If you object to killing your patients, consider getting educated and contact your local member and other parliamentarians in your state to register your objection. Educate your congregations, talk to your friends and family. There is so much misinformation in this debate that it is possible EPAS will enter our lives through sheer ignorance.

Lastly, I would just like to add on a personal note that I did not join the medical profession to kill my patients. It is not a goal of medicine. I object to being told by the government that my profession now includes this practice.

To adapt a quote from one of my favourite papers on euthanasia: “What if politicians were the ones who were suddenly told they had to administer EPAS? There is a difference between thinking it best that something should happen and thinking that you should do it – between thinking that it would be best if a person were to die and thinking that you ought to kill him or her. The latter involves questions of personal moral responsibility for ending a human life that politicians may be reluctant to take on. Euthanasia has not traditionally been a major focus of medical education. So, then perhaps we should reconsider the implications of asking a profession to take on a duty for which it feels ill-equipped, about which at least some of its members have deep moral reservations, and which carries such potentially grave consequences for those to whom that duty might be directed.“

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