Euthanasia – Protecting the Vulnerable
Death is one of the few common experiences of life. None of us get out alive.
To those who have shared their stories, either as their own death approaches or they reflect on the deaths of their loved ones, know that you will be in my heart always. It has been the great honour of my life.
For both those in favour and those opposed, we honour you, we respect and we care for you. I believe all in this discussion are motivated by love and goodwill.
I admire your dignity: in life, in dying and in death. You are valued.
I have long had a nagging sense that euthanasia would test to its very limits our ability to make laws to end human life, while also protecting the lives of those least able to protect themselves. I have read this bill in full and monitored the dozens of version it has gone through. But having laid awake last night thinking about the proceedings of yesterday, I can’t help but be overwhelmed by the sense that our Parliament sits on the cusp of terrible oversight which will endanger the lives of those who we should be taking extra special care to protect. Today, I want to lift up their voices.
I will speak today of those most affected by euthanasia, principally two groups. The small number of people for whom in 2020 the medical system currently has difficulty managing their pain. And the very large number of people for whom the medical system has long been unable to guarantee safe, quality care; older Australians, First Australians and people living with disability. If you take nothing more from my speech then let it be this, hear the words of writer, comedian and disability advocate Stella Young: “Before we can talk about death with dignity, we need to ensure that all people, regardless of age or disability, can live with dignity. We're not there yet.”
I come to this discussion as the youngest person in this place, having been 4 years old when Oregon legalised euthanasia, and 11 when the Netherlands did the same. I was 5 when it was legalised in the Northern Territory and 7 when it was repealed. And in many ways it seems to me that the discussion is from another time. It has not kept pace with the world as it has evolved around us since those early days. In particularly, three areas stand out. First, we have, as a society, come to understand how widespread elder and disability abuse is in our community and the number of people who suffer coercion, physical assault and profound neglect by family members and the medical system, even in care.
Second, we have witnessed the cascading crisis of youth mental illness across our society, particularly among indigenous kids, with horrific instances of youth suicide as a result of depression, anxiety, sickness, and children lost in a society which is freer than ever, yet at the same time seems to be diminished in its capacity to offer purpose, meaning and hope to the next generation. Third, there seems to be too little acknowledgement that decades of medical advancement in palliative care have removed difficult to manage pain from all but a handful of terminally ill people, and more progress is on its way.
The discussion seems to presume that many people suffer painful deaths in care in 2020, that all elderly people and people with disability are loved and respected, and that young people are universally filled with purpose and hope for their future. Recent years has proven that none of these things are true and all are at the core of the unintended consequences of euthanasia.
We have never been so close to the high flung dream that all human life, no matter your race, colour, creed, age, disability or background, would be valuable as an end in itself at all times. And medical science has never been closer to a situation where nearly none who are sick would die in pain. And yet, if euthanasia were to pass here, we would turn our backs on these worthy goals at the moment when they are closest to our grasp. In my heart I believe this is a step in the wrong direction, a nod to times long past where euthanasia of the sick, the old, the indigenous or those with disability was far more the norm, not the exception.
Australia has so far been unable to create a system that cares which is free from abuse. If that is the case, I cannot see how we can create a system that kills which is free from abuse. And indeed even one wrongful death must prevent us from making such laws. Whether they are the child in Belgium, the elderly dementia patient in the Netherlands, the woman living with disability in Switzerland, the indigenous man in Canada, the elder abuse victim in the State of Oregon. Perhaps soon a Tasmanian, from any of these walks of life.
The experience of the ongoing Australia Royal Commission into Aged Care Quality and Safety, and the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has already been bruising. The Aged Care Royal Commission is further advanced and one which I know well and it has exposed horrific stories of abuse of thousands of older Australians who deserved better. Indeed the Commission’s Interim Report was titled simply, heartbreakingly: “Neglect”.
Until I can put my hand on my heart and say we have done all we can possibly do to provide high quality care for all people, including those in the far flung, out of the way places like the places I’ve lived and the places I represent, then I believe we must not provide people who are sick the false choice between insufficient care and early death. With two Royal Commissions into abuse in Aged Care and Disability, with a persistent lack of palliative care beds, hospice care and in-home care, we have more than enough evidence to realise that we are not ready as a society to cross this threshold. With the clarity of a man’s final act of this Earth, Aged Care Royal Commissioner Richard Tracey, who passed away of cancer in October 2019, wrote in his Interim Report that month:
“The Australian community generally accepts that older people have earned the chance to enjoy their later years, after many decades of contribution and hard work. Yet the language of public discourse is not respectful towards older people. Rather, it is about burden, encumbrance, obligation and whether taxpayers can afford to pay for the dependence of older people. As a nation, Australia has drifted into an ageist mindset that undervalues older people and limits their possibilities. Sadly, this failure to properly value and engage with older people as equal partners in our future has extended to our apparent indifference towards aged care services. Left out of sight and out of mind, these important services are floundering. They are fragmented, unsupported and underfunded. With some admirable exceptions, they are poorly managed. All too often, they are unsafe and seemingly uncaring.
This must change.
“Left isolated and powerless in this hidden-from-view system are older people and their families. ‘This is not a life.’ ‘This is not my home.’ ‘Don’t let this happen to anyone else.’ ‘Left in her own faeces, and still no one came.’ ‘Mum doesn’t feel safe.’ This cruel and harmful system must be changed. We owe it to our parents, our grandparents, our partners, our friends. We owe it to strangers. We owe it to future generations. Older people deserve so much more. We have found that the aged care system fails to meet the needs of our older, often very vulnerable, citizens. It does not deliver uniformly safe and quality care for older people. It is unkind and uncaring towards them. In too many instances, it simply neglects them.”
Madame Speaker, we must be cleared-eyed about our society and the systems we have established. I cannot use my vote to cause one wrongful death.
Craig Wallace from disability advocacy group Lives Worth Living said in 2017: “We know that people with disabilities are more likely to be physically, sexually, emotionally, and otherwise abused and coerced on a range of issues – and that’s likely to be the case with euthanasia.”
Know there are people with disability who choose life every time, against the advice of their doctors.
In 2019 Disability advocate Samantha Connor spoke about an experience she had protesting the euthanasia film Me Before You.
"Because I'm completely hilarious I had a giant tin that said 'Send Me to a Swiss Suicide Clinic' and I rattled the tin after we'd finished our tiny protest, in jest, thinking that I was being funny. There were about 15 of us, all disabled people and the woman who I rattled it at put money into the tin and said: 'I support you.'
"And so we thought this was initially wonderful, we could rattle the tin for some time and then go to the pub. We took our tin and rattled it and over the course of the next hour, the smiles faded from our faces, because no single person said 'no'."
"There were people who said if they were in a wheelchair, they would also want to die. And nobody said: 'Why do you want to die?' Nobody said: 'Are you okay?'
"It was such an awful moment for our group of people and it was the thing that solidified for me that we actually can't safely put in place in this country assisted suicide legislation."
Disability advocate Liz Carr said in 2017: “some of the worst coercion is choosing it yourself, because you feel you’ve got no option.
These experiences are reflected in the words of Former Prime Minister Paul Keating who said in 2017:
“… the advocates support a bill to authorise termination of life in the name of compassion, while at the same time claiming they can guarantee protection of the vulnerable, the depressed and the poor.
“No law and no process can achieve that objective. This is the point. If there are doctors prepared to bend the rules now, there will be doctors prepared to bend the rules under the new system.”
They were all talking about euthanasia laws that are far more limited than this one.
Indeed, we must know that people who are dying, or living with disability, are often depressed, anxious or unwell.
I grew up in a place that had the highest child suicide rate in the world. If the Kimberley were a country it would have more deaths by suicide of any place in the world, and 9 in 10 of those people are Aboriginal. 7 times more people kill themselves in the Kimberley than in the rest of Australia.
More than a dozen children as young as ten have hung themselves in the last few years. Many have suffered physical sexual and substance abuse from an early age. Many indigenous suicides have come from chronic disease and disability, many were lucky just to make it out of the womb.
I had the honour and privilege to watch Kimberley Yawuru lawman,
Australia’s Father of Reconciliation and Labor Senator Pat Dodson speak to the Senate in 2018 on the proposal to facilitate euthanasia in the Northern Territory.
He said on that occasion:
“Where First Nations people are already overrepresented at every stage of our health system, it is irresponsible to vote in favour of another avenue to death. Paving the way for euthanasia and assisted suicide leaves First Nations people even more vulnerable, when our focus should be on working collectively to create laws that help prolong life and restore their right to enjoy a healthy life.”
“Paving the way for euthanasia and assisted suicide leaves First Nations people even more vulnerable, when our focus should be on working collectively to create laws that help prolong life and restore their right to enjoy a healthy life.”
As a member for Braddon I have the great honour to represent more than 7,000 Aboriginal people, or 7.5 per cent of our population, nearly 3 times the national average.
While their voices are varied and their experience of life different, there are common threads. Life expectancy 15 years less than the average, higher chronic disease and disability, more suicides than any group in our population. Suicide follows people around, as does kidney failure, diabetes, foetal alcohol syndrome and abuse.
These are also the common experiences of non-indigenous people in North West Tasmania too.
Euthanasia has been opposed time and again in places with large indigenous populations by indigenous leaders, including the NT court cases against their shortlived euthanasia laws. The reason is because euthanasia extends to the state the power over death, when for decades the state has already had suffocating powers over indigenous lives.
Euthanasia is widely criticised as a clear barrier to healthcare for indigenous people here and where it has been tried and overseas, particularly Canada.
Madame Speaker, may we have the strength to say that we want them to live, despite their suffering and their will to end their own lives. Not because they are young or old, but because they are human. Not because they are able-bodied or living with disability. Not because they are white or they are black, but because they are infinitely, miraculously, desperately loved. Let this be our approach to all people, the lonely and the scared, the skinny and the sick. You are loved, you are infinitely, miraculously, desperately loved, and we don’t want you to go a moment too soon.
Modern medical ethics have strongly supported the choice of people in refusing or receiving care at the end of their life, but strongly rejected the involvement of the state in bringing about the death of that person. The paradox physicians have identified has been that people have requested medical interventions, but then also requested assistance to end their life. The choice that has so often been spoken of can be delivered by the new legal and medical intervention of the Advanced Care Directive. It acknowledges that people have a right to choose their end of life care, and that lifesaving medical interventions can be withdrawn, while at the same time, pain management can continue. The difference is that it does not allow the state, doctors, to make the decision about death. It allows the person to make their choices about the end of their life.
I know from my Mum’s experience, a remote area nurse and a midwife, that she has spent a lifetime living up to the Hippocratic oath. She has saved and revived premmie babies at barely 20 weeks, little more than a skun rabbit, saving children with foetal alcohol syndrome abandoned by parents, resuscitating the sick and the dying. She’ll do whatever it takes to keep people alive while they want it. That is, until that moment when they say “Stop now Sister, that’s enough.” Perhaps to those who have never been a healer it is a distinction that is hard to understand. But to those people, those incredible people who are there with us at every step, from cradle to grave, it is everything, and I believe them.
There is majority public support in Tasmania for both the death penalty and euthanasia. There is also majority opposition by the people who understand these procedures most, lawyers and doctors. Why is this? It is because they are the ones with the clearest sense of their own fallibility, and that of their colleagues. They are the ones that know the limits of human capacity, and one of those limits is the taking of life by order of the state. That the death penalty must be opposed for one hundred guilty people, because there is a chance one innocent man is wrongfully put to death. In much the same way, for the deaths they cause to overcome difficult to manage pain, doctors know there will be elderly abuse victims, people living with disability, indigenous people, perhaps one day a child, who will suffer a wrongful death. There will be suffering on either side of the decision we make in this place on this bill. The choice we have as lawmakers is between shortening the suffering of the 2 to 4 per cent of the population in 2020 that die with difficult to manage pain, and the lives lost wrongfully, enabled by the stroke of our pen, who didn’t even have an adequate voice in the safety and quality of care they received, let alone in the death that came too soon.
Life and its many mysteries is a precious gift, no matter what the time we have been given. At this time in my life I think of the baby born with only days to live, or with a profound disability. At another time hence I will think of the precious moments remaining in the lives of my parents, my darling Margot or my own. In life’s cycle we come into the world dependent on others for the care that makes life possible. As we leave it is often much the same. In our culture, we have worked hard for many centuries to overcome the belief that there are those among us who are a burden. Most profoundly of all has been the overturning of the belief that dependent children are a burden, though tragically there are still many dozens of countries around the world where the girl-child or the disabled child is put to death because she is viewed simply as a drain on the family’s resources. Every baby girl who passes away due to a cultural view of her as a burden is an unimaginable horror. We should not be a society which opens the door to the deaths of the least of us, and which says that those lives, of the girl child, of the people with Down Syndrome or foetal alcohol syndrom, of the mentally ill, of the elderly, are not worth living.
To all those at the end of life, caring for another, or even just considering what it might be like when your time comes, know that I have held you in my heart. Know that I have read and heard your difficult road. So I say to us all, let us find the strength of character, the strength of culture, to reach out a hand to people dependent on care. In the dying moments of a parent let us not forgot that it is we, not they, who must be strong now. I have had moments in my life as a younger man, and I am still a young man, where I considered ending it all. I was lucky to be much loved. I have seen my own father at the end of his tether with the Black Dog, and was fortunate enough to realise at that time that it was my time to become the one who is strong for him, and that it could make all the difference. To let them know they are valued, they are loved, that there is hope of brighter days ahead, and that in life, whatever it’s form and indeed, despite it’s form, that there is dignity. Jordan Peterson has written:
“It is necessary to be strong in the face of death, because death is intrinsic to life… aim to be the person at your father's funeral that everyone, in their grief and misery, can rely on. There's a worthy and noble ambition: strength in the face of adversity.”
I have seen the failure of law makers around the world to devise watertight solutions to life’s many challenges. The regulations governing how we build buildings, the circumstances that we put criminals to death, our reasons for going to war. I have received cases of failed medical diagnoses, either how long someone has to live or even if they are sick at all. This legislation cannot pass if it will result in a wrongful death, because the final review of a wrongful death will not be by a Parliamentary committee or by community forums. It will be by the Coroner.
Friar Justin Huang put it clearly: “Life, even when there is pain is better than no life at all. It’s still precious, still a gift. Why? Because the human person is made for love, and love can actually grow stronger in relationships when we’re suffering.”
In closing, I want to return again to the words of Stella Young, whose response to the defeat of a previous Tasmanian Parliament’s attempt to legalise euthanasia were highlighted by Senator Deborah O’Neill (ALP, NSW) in the 2018 euthanasia debate:
“I'm accustomed to assuring people that my life is worth living. I'm short-statured, a wheelchair user, and I frequently have bone fractures. People make all sorts of assumptions about the quality of my life and my levels of independence. They're almost always wrong.
“I've lost count of the number of times I've been told, "I just don't think I could live like you," or "I wouldn't have the courage in your situation," or, my favourite one to overhear (and I've overheard it more than once), "You'd just bloody top yourself, wouldn't you?".
“Also, social attitudes towards disabled people come from a medical profession that takes a deficit view of disability. This is my major concern with legalising assisted death; that it will give doctors more control over our lives.
“As a disabled person who has had a lot to do with the medical profession, I can tell you that this is the space in which I've experienced some of the very worst disability prejudice and discrimination. Doctors might know about our biology, but it doesn't mean they know about our lives.”
You have my word as my bond, as a person new to this place, that I will fight tirelessly for the modern palliative care that every Tasmanian deserves. For the quality, safe, empowering care that enables older people, Aboriginal people and people living with disability to choose life, a life of dignity, care and respect. Perhaps one day we will be able to put hand on heart and say that this has been truly achieved, and I pray that it does soon. But it is not this day. I will oppose this Bill for them.