Voluntary Assisted Dying Bill 2021 Speech
Almost a decade ago, on 23 May 2013 I stood in this place as another bill in support of Voluntary Assisted Dying was voted down 23 votes to 13.
It was a bill that I introduced after working with stakeholders for a number of years and building on the work of my former Greens colleague, Ian Cohen.
When that bill, the Rights of the Terminally Ill bill, was defeated, there was a cry from the President’s gallery:
You have no right! You’re all gutless!
That man was Paul Fletcher.
Paul suffered from Charcot-Marie-Tooth disease for more than 40 years. It is a terrible hereditary disorder and by the time I met Paul he had both legs amputated due to gangrene and was in excruciating pain every day.
Paul died waiting.
Paul has joined by Loredana Alessio-Mulhall who I’ve spoken about in this chamber a number of times before.
Back in 2012 when I first met Loredana she was already paralysed from the neck down, answering the phone by blowing into a tube, from the multiple sclerosis which eventually killed her. She lived alone, only qualifying for 7 or so hours of care a day meaning much of the day she was in her apartment alone.
For years Loredana begged politicians in this state to make assisted dying legal.
After spending the last stages of her life being a tireless advocate for voluntary assisted dying, Loredana died waiting on 13 April 2019.
The last attempt to legalise voluntary assisted dying in this place was the culmination of work by the NSW Parliamentary Working Group on Assisted Dying and introduced by former National Party MP Trevor Khan, with my colleague, the former Greens MP Mehreen Faruqi, in 2017
It too failed.
NSW could have been the first state to legislate voluntary assisted dying. Instead we are the last.
And in the years between when this house first considered the issue and now, countless people with cruel terminal illnesses died traumatic, agonising deaths that they were desperate to avoid.
So now let’s get it done.
Today, I stand here as a proud co-sponsor of this bill, acknowledging there are 27 other co-sponsors, a record for any bill introduced into any Parliament in Australia.
I only have 20 minute allocated to speak so I’m not going to outline the bill’s provisions and comprehensive safeguards.
That’s been covered extensively in the other place and by the mover in this place.
This bill is the product of significant research and consultation and I want to acknowledge the work of Alex Greenwich MP and his adviser Tammy Nardone in getting us to this point.
The bill builds upon experiences in jurisdictions around the world, as well as here in Australia, which have successfully introduced schemes that provide a legal framework for mentally competent, terminally ill adults to access assisted dying at the end stage of their lives when their pain and suffering has become unbearable.
When I spoke to my 2013 bill I outlined the reasons why I strongly support voluntary assisted dying and I refer anyone who is interested to that debate.
Since then every other state has moved.
Victoria was the first state to pass voluntary assisted dying laws in 2017, with their Voluntary Assisted Dying Act coming into effect on 19 June 2019.
WA's law came into effect on 1 July 2021.
Tasmania's law will commence 23 October 2022.
SA's law was passed on 24 June 2021.
QLD's law will commence in January 2023.
It’s now beyond time for NSW to do the same.
And while we’re at it, the archaic commonwealth law that prevents the ACT and the Northern Territory to introduce their own voluntary assisted dying laws also must be abolished.
On 23 February, I tabled a petition in the Legislative Council with 100,000 signatures in support of this bill. It was the same petition tabled in the Legislative Assembly by Alex Greenwich MP.
It shows the extraordinary level of public support there is in the community for these laws to pass - support which has ballooned in the past decade.
Part of the reason for this support is that everyone has a story.
Some of these stories were compiled by Go Gentle and Dying with Dignity NSW in the publication they provided to all MPs.
The stories by the loved ones of terminally ill people who died traumatic, painful deaths are harrowing and distressing.
I met with Cathy Barry to hear her story of her beloved brother Tom who was diagnosed with a metastatic facial cancer in 2019 at the age of 69. Tom’s last two weeks of his life were spent in agony.Tom’s facial cancer started to grow inwards and outwards. His jaw became terribly deformed and his face started dropping. He started to drool out of his mouth months before he passed away and he had terrible, painful mouth ulcers.
Cathy Barry gave evidence to the committee that about 2½ weeks before he died Tom said to his family, "I am in unbearable pain all over my body. I feel really, really sick. I am ready to die and I want to die." That option was not available to him. In his final week he could barely speak and uttered only two words - “inhumane” and “help”.
The argument that people access voluntary assisted dying because they are afraid they are becoming a burden to others just have no basis in fact. However, this didn’t stop Dr Gregory Pike, Director of the Adelaide Centre for Bioethics and Culture, telling the inquiry:
people made to feel they really ought to go, so as to stop burdening others, and made to feel they are consuming resources that might be better spent, lives made to feel they have no remaining value, and so death becomes a benefit.
But when someone with a terminal illness is screaming in pain at the end of their lives, sometimes for days, begging their loved ones and the healthcare workers around them to show some compassion and end their lives, why can’t they have the choice of the benefit of an early death?
They know what’s in store for them.
They’ve researched it. They’ve spoken to their doctors.
Sometimes they’ve witnessed the terribly painful death of a parent from the same disease - this is quite common with people with mesothelioma or motor neurone disease for example.
People who want to access this law are staring an absolutely horrific death in the face.
They don’t want to die.
They would do anything to not have the terminal illness that is eating away at their bodies and minds. That is taking them tragically and too soon.
But they are dying.
Palliative care is a wonderful thing and more resources need to be invested in it, particularly in regional NSW.
But the evidence, and countless testimonies by loved ones of terminally ill people who have died, proves that it can’t help everyone.
One witness at the Inquiry from the Presbyterian Church stated where she worked in palliative care when the majority of patients who requested euthanasia they were able to be helped by actually sitting down with them and going through the concerns that they had, some of which were the potential for ongoing pain.
That’s wonderful because palliative care is an essential part of end of life care for many people. But not for everyone.
How would sitting down and going through the concerns with Jayde Britton have helped her in her last few weeks of life from cervical cancer? Her partner Abbey Egan gave evidence to the Upper House Inquiry into this bill:
The way that her tumour was positioned in her body—when I would have to change her, parts of her tumour would fall out from her, which was horrendous for everyone involved, especially Jayde, obviously. The tumour was so large in her back that it cracked her vertebrae. In terms of her being in bed, when we would have to move her so she wouldn't get bedsores, trying to roll her over—she would scream in absolute agony because of the cracked vertebrae. You could only imagine.
They are just things that people should not have to go through... Unfortunately for you guys, you did not get to know Jayde. But if you did know Jayde, you would know that she was an incredible fighter and she did not want to die.
The way that she was forced to leave this world is horrific. It is just so unjust. When you put the people that you love the most in these positions and you watch the way that they are forced to leave this world, it traumatises you.
I was 28 when Jayde died. I am 31 now and it is never going to leave me. It is never going to leave her family. It is never going to leave my family. It will forever be etched in my memory.
The death of Ray Smith’s wife Tanya a non-smoker, of lung cancer:
“The pain was constant and brutal. It sent her almost insane
No amount of medication would ease it, and the doctors were withholding food and drink. She eventually died in agony, and with thirst and starvation. It wasn’t very dignified for her, or peaceful.”
The doctors were withholding food & starvation!
They were hastening the inevitable death of Tanya in a manner that, if someone did the same to an animal, they would be charged with animal cruelty.
I note the letter addressed to members in this palace dated 22 February and signed by more than 100 NSW doctors including the former Deputy Premier and NSW Health Minister the Hon Dr Andrew Refshauge, asking us to support this bill. I want to read from that letter:
As medical professionals, we interact with adults with terminal illnesses. We know that some of our patients experience great suffering, when treatment options have been exhausted and death is inevitable.
The suffering can be severe and causes harm, not only to the dying patient but also their families and the health teams caring for them.
Even with optimal palliative care, some patients still suffer a prolonged and distressing death, with symptoms that medical science is not able to adequately relieved.
They also state that:
At present, doctors work in a legal grey area when it comes to caring for dying patients. A clear, regulated framework will provide certainty and protection for both patients and practitioners. A voluntary assisted dying law will also allow our patients to have more open conversations with us about the end of their lives and the choices available to them.
Milenka told Go Gentle the story of her mother from Macmasters Beach who made the choice to die not in hospital, but at home in her end stage of pancreatic cancer and being told that death from malnutrition would be about a month!
Opponents to voluntary assisted dying ignore the reality that people are killing themselves in violent ways, leaving their loved ones or first responders to make the gruesome discovery.
Mr Gavin Patullo, a Senior Staff Specialist Anaesthetist and Pain Medicine Physician, gave evidence during the inquiry found his wife who had lived for 14 years with recurrent aggressive leukaemia and who faced death by asphyxiation, was forced to take her own life alone and without saying goodbye to her loved ones.
How can we not allow someone with Motor Neurone Disease or severe Multiple Sclerosis like that which afflicted Loredana to be able to choose when to die from the disease that will eventually kill them by slowly paralysing them to the point that they choke or suffocate to death, over many weeks and months.
Remember we are talking about people who are dying anyway.
People for whom death is staring them in the face.
People who know that their death will be drawn out and cruel and agonising and undignified because of the very nature of the terminal illness they are afflicted with.
I say to those opponents of the bill who are against voluntary assisted dying because of their religion.
You don’t have to access this law when your time comes.
Remember there’s that really important word in the title of the bill - Voluntary.
The vast majority of people alive today will never, thank goodness, be in a situation where they seek to die by this law.
Even most people with a terminal illness won’t access the law.
But for those whose pain and suffering is beyond anything we can imagine, when the tumours are eating them up from the inside out, when they cannot hold back the screams any longer as mesothelioma tears through their body and shuts it down, when motor neurone disease eventually stops the muscles in a person’s diaphragm from doing its job and they’re put on an oxygen machine to breathe, when a person is vomiting their own faeces in the final days when bowel cancer has destroyed any remaining dignity they have.
But don’t stand in the way of these people accessing an assisted death if that is their wish.
National coronial data reveals that one in five suicides of people over 40 in NSW in 2019 were by people with a terminal or debilitating medical condition or had experienced a significant decline in physical health.
Penny Hackett from Dying with Dignity spoke of how the mother of one of her friends jumped in front of a train at Lindfield station several years ago.
She had a terrible cancer and saw no other way to end her suffering. She had a loving family and the best possible medical care, but she felt she had to take matters into her own hands.
So too father-of-two Lawrie Daniel who took his own life before MS robbed him of the use of his hands. His son Albert is the sponsor of the active e-petition to this parliament to support the bill.
Dr David Leaf NSW Convenor and National Co-convenor, Doctors for Assisted Dying gave evidence to the inquiry and spoke of discussions he had had with his counterpart in the United States, Dr David Grube, one of the original doctors in Oregon who has been involved in assisted dying for 24 years:
Dr Grube [said that] in those families who have had to come home to find their loved one deceased… compared to those deaths where assisted dying has been able to be achieved… that the families left behind, and especially children and adolescents, are much better off for the rest of their life. You can imagine coming home to find your father or loved one dead in some grisly way compared to having the opportunity to set a date, you know it is coming, the person dies peacefully, there is some music, you get to hold their hand, you get to have a cry and say goodbye.
I know that some disability advocates have expressed their concern that voluntary assisted dying laws could be used to hasten the deaths of people living with disabilities.
There are strict safeguards in place to prevent this occurring and I know that my colleague Abigail Boyd will address the issue more broadly in her speech.
I want to thank everyone who has worked tirelessly to see voluntary assisted dying laws passed in NSW and the organisations that have contacted us in support of the bill including the NSWNMA, the APA, COTA, the Older Women’s Network, ACON, Cancer Voices NSW among many others.
There are some individuals who have gone above and beyond and literally dedicated years of their lives to ensuring voluntary assisted dying becomes lawful in this state. Shayne Higson and Penny Hackett from Dying with Dignity NSW need particular mention here.
Andrew Denton, Dr David Leaf, Dr Robert Marr too and the politicians including Alex Greenwich, Trevor Khan, Mehreen Faruqi, Ian Cohen and others who have championed this cause in this place and outside of it for many years.
I note there were 46 amendments agreed to in the other place.
The Greens won’t be moving any amendments to this bill in the Upper House. We believe that, while some of the amendments weren’t necessary because adequate safeguards already existed in the bill as introduced into the Lower House, the bill before us today should be supported unamended.
Let’s just get it done.
This bill has resoundingly passed the Lower House.
Other similar laws have been debated, and passed, by parliaments in every other state in the country.
There is massive support in this state for voluntary assisted dying to be legal.
How many more terminally ill people in NSW who are staring down the barrel of an agonising, distressing death have to die waiting?
Will we vote to give them and their loved ones some of them comfort in the knowledge they may just be able to access a more peaceful and dignified death when their time comes?
We are elected to this place to make laws that make the world a better place.
That is what this sensible, compassionate and long overdue bill does.
I proudly commend it to the House.