When you can’t argue for the right to die
As the first anniversary of the state’s Voluntary Assisted Dying program approaches, in his Opinion piece written for InDaily, Morry Bailes examines the legislation, its impact and one significant, thorny issue.
Click on the image below to read the article published in InDaily.
South Australia’s assisted dying laws are closing in to their first anniversary, having been proclaimed in January of this year.
It took our parliament 17 attempts over 25 years to pass the laws, contained in the The Voluntary Assisted Dying Act. How have they fared and are they meeting the objective identified and acted upon by state parliament?
Voluntary assisted dying – otherwise described as euthanasia or assisted suicide – was, and is, a hotly contested subject. The vote split most South Australian political parties down the middle. Reasonable arguments exist both for and against the laws and it obviously resulted in a fair bit of soul-searching on the part of our parliamentarians, given the length it took to get them through the parliament. Now all Australian states have passed these laws. New South Wales was the last, with its Act having just taken effect.
In South Australia, the access to the assisted death pathway created by our Act was immediately taken up. According to the Voluntary Assisted Dying Review Board, as at the end of June 2023 some 68 people were issued with a voluntary assisted dying permit, and 45 of those people died. Of those, 27 had cancer and 10 had a neurodegenerative disease. Five were under 60 years of age, the vast majority being older, with three dying in their 90s. Most died at home or in a hospital. 12.5% died in residential aged care.
South Australia’s laws are fairly restrictive when compared with some European countries. For example, in the Netherlands, their law covers physical and psychiatric conditions. Individuals must be experiencing, constant and unbearable, physical or psychological suffering, with no prospective improvement to access assisted dying, and the process can be accessed by children between 12 and 16 years with parental consent.
We are however an inherently more conservative people and many who are on the fence with this difficult issue may draw a level comfort with the limited way the laws have been enacted and safeguards placed in the legislation. Whereas euthanasia laws enable minors in some European states, such as the Netherlands, to be assisted to take their lives, that is not the case in South Australia. Participants must be 18 years or older. We have discouraged offering assisted dying to anyone but South Australians by requiring a minimum residency in our state of 12 months to qualify, although you may come home to die. Previous residency in South Australia is counted.
You must of course satisfy decision makers, who include doctors, that you are acting of free will and not being coerced. A request to access the pathway cannot be made by any person other than the patient.
The safeguards in the Act recognise that this is a definite risk area, as elder abuse is sadly a very real phenomenon in our country. In many ways it is a hidden shame because of the inability, due to a number of factors not least advancing age and infirmary, for victims to speak out. Then there are those who are subject to coercion and partner violence. It is critical for medical practitioners involved, that they are satisfied in all cases that a person who wishes to be assisted to die is acting wholly of their own volition and acting entirely freely.
Then there are what in essence are medical questions. One must be dying. We all of course are one step closer to death with every day we live, but that is not of course the definition here. In our voluntary assisted dying laws, in order to access the pathway, our voluntary assisted dying laws require that the person must be suffering from an incurable, advancing and progressive “disease, illness or medical condition”. Further, a judgement must be made by a suitably qualified medical practitioner that that person is expected to die within six months, or in the case of a neurodegenerative disease, within 12 months.
These are questions for the medical professional and may be difficult at times to answer. Doctors carry a considerable moral as well as medical load on their shoulders in making these decisions. Only participating doctors registered with the scheme may be consulted. As at 30 June 2023, 111 doctors were participating in South Australia.
The threshold life expectancy criteria, in effect likely limits our laws to those with a physical illness, because it is difficult to contemplate a case where someone who suffers a mental illness can be said to be expected to die within a certain period, even though that person may have had earlier attempts to end their life. As such our laws differ in this respect from some European countries that have a much wider criteria.
Central to the person’s decision to end life is mental capacity. This is another reason why a mentally ill person, or a person suffering a disease characterised by cognitive decline will be unlikely to be able to utilise the pathway, at least not at the point of acute illness. The gap in this legislation is for those in the community who would wish to die, but lack mental competence to say so.
As life expectancy grows, accompanied by our increasingly sedentary lives, the numbers of Australians who are succumbing to illnesses such as Alzheimers has soared. Alzheimers is a dreadful disease; a life sentence that unfolds in all its horror, on a day by day, day after day, basis as the brain is atrophied. The brain shrinks and ultimately all mental faculty is lost. It is a disease, incurable, advancing and progressive. Doctors are only able to estimate in the later stages when someone will likely die. By that time, the person has well and truly lost capacity to make the decision to end their life using the assisted dying pathway.
Our aged care facilities have large numbers of patients who have a variety of dementias many of whom have lost mental capacity, who themselves would wish to die but who have passed the point of being able to make a request under The Voluntary Assisted Dying Act. In discussion with someone whose mother suffered Alzheimer’s, the sentiment expressed was of the dismay not only of her mother’s condition, but that her mother would have been horrified to see herself in that state. Her mother, she was convinced, would have asked to die. But there was no mental capacity, and the lost mind was trapped in a body that had also lost and was losing the most basic bodily functions. It was, and remains for many people, a living death.
Can such a person leave a document in advance, knowing the diagnoses, knowing full well the progression of the disease, for when they would like their life to end? Can, for instance, that person leave binding instructions by way of an Advanced Care Directive, a document created by legislation that came into effect in 2014, in which we may leave our end of life wishes and directions?
They cannot. An Advanced Care Directive is limited to instructions as to when treatment is to be refused. This is to be contrasted with the Dutch position, which permits a person suffering from advanced dementia, who has made a written request, to have access to the assisted dying process. The sad fact is that we do not have a mechanism legislative or otherwise, that enables someone who lacks mental capacity to request voluntary assisted dying. Should the Act be amended to provide for it?
This is a fraught question indeed. How does one know for certain what each individual person would do when they ultimately face this set of circumstances? Even when a person has lost mental capacity, there are stages where they retain memory and recognition of people. How might we know exactly what remains deep in the minds of those entrapped in a failing body even though there is no meaningful response that may be elicited from them? We are not gods. We cannot ever ultimately know.
That is why this law was so difficult to create. Parliamentarians have had to wrestle with the most profound moral and philosophical issue; life itself, and the extinguishment of life. As for those with religious belief, life is utterly sacred. Even without the obligation of faith, life is our greatest treasure. Every moment of life is a gift of sentience that so few in this vast universe experience. Who are we to take life unless we can act with complete certainty?
It is also a potential slippery slope to manage. As the author Pete Saunders said: “The right to die can so easily become the duty to die.” Some older people may feel that they are a burden on their families as their health fails. It is not outside the realm of possibility that someone may wish to ease the perceived burden on their family or carers by choosing to access the assisted dying pathway. This we cannot allow, for notwithstanding the terrible ravaging tyranny of dementia, there still exists in medicine and science the imponderable and the unknowable.
Parliament in its wisdom has given South Australia this Voluntary Assisted Dying Act. It is a relief to many, an offence to some, but the large majority of Australians support voluntary assisted dying, according to polls. Now nearly a year on South Australia’s law still appear to be conservative when matched against some other legislative regimes, particularly across Europe.
However, they do not cater for all, most particularly South Australians suffering from the scourge of mental incapacity caused through illness and disease. For those people there is no end to their suffering until their life, unassisted, finally departs their ruined bodies and minds.