Contribution on Voluntary Assisted Dying
19 October 2017
Ms RYAN — Nobody wants anybody to die badly. That observation was made to me in the lead-up to the debate on this bill, and I believe that it holds true for both sides, both for and against the Voluntary Assisted Dying Bill 2017.
As other members have said, this has been the most difficult decision I have had to make in this place, and it is likely to be the most difficult decision I will ever make. I have agonised over it. When an issue is as emotionally charged as this, there is often a danger of turning complex policy into pithy statements. Undoubtedly people's views are formed by their own personal experiences with death or in some instances by family beliefs or moral or religious frameworks. I respect that, but for my own part I have endeavoured to come to a decision grounded in evidence, not emotion, and I have done my best to be open to all sides of the argument.
As legislators I believe we have a responsibility not just to see this through a simple lens of good or bad, black or white. To me it is infinitely more complex. Ultimately we are being asked to weigh requests for dignity, control and choice at the end of one's life against concerns about the government's failure to address palliative care, a lack of information about the drug that will be used and possible flaws in the safeguards proposed.
Twelve months ago I was in favour of voluntary assisted dying. I believe the report handed down by the Legal and Social Issues Committee into end-of-life choices presented compelling evidence that end-of-life care in Victoria requires change. I support giving individuals who are suffering intolerably and who have had an incurable illness a choice about their death. Not only does it accord with my belief in individual liberty, but it also reflects a compassionate approach.
I also do not deny that the status quo is failing many Victorians who are dying badly. The Coroners Court of Victoria has given evidence that around 50 Victorians a year are taking their lives after experiencing irreversible deterioration in physical health. We cannot be blind to the fact that people are taking their own lives in Victoria every year in brutal, violent ways because they find their suffering intolerable, but I also have reservations about this legislation, and unless those concerns are addressed I cannot support it in its current form.
For that reason I will be voting in favour of the reasoned amendment put by the member for Monbulk. I am intensely aware of the great disappointment that my decision will cause many people — constituents who have been brave enough to share some harrowing stories with me, as well as very dear friends who believe passionately in this legislation. In many ways the easy choice is to vote for it. I believe most people my age are in favour of the legislation, and it is certainly clear to me that there is great support across my electorate, but to do so would turn a blind eye to a number of issues which I believe the government has not adequately addressed.
Chief among my concerns is the government's failure to adequately invest in palliative care. It should be noted that one of the key principles within the Legal and Social Issues Committee's end-of-life choices report was that high-quality end-of-life care should be available to people in all settings. The report also noted that there are gaps in the quality and provision of palliative care in Victoria and, of particular relevance to my constituents, that services are not as accessible for people who live in country Victoria.
When I sought the views of Marg Aldous, chief executive and director of nursing at Cooinda, a wonderful aged-care facility in Benalla, her advice to me was as follows:
In essence I believe in advance care planning. Secondly, I believe in excellence in palliative care. Palliative care is about dignified death and does assist the dying process.
She concluded by saying:
If the bill is to become a reality, I believe there should be very clear fail-safe safeguards to the process.
It remains of significant concern to me that Labor, while bringing forward this legislation to legalise assisted dying, has not sought to address those gaps in palliative care. To put that in context, the first 29 recommendations in that report were designed to move Victoria towards a community-based approach to palliative care, including the recommendation that the Victorian government increase availability of reliable response services, particularly in rural and regional areas. The recommendation to legalise assisted dying was but one recommendation, the last in the report. The Liberals and The Nationals have made a commitment of $140 million in palliative care to increase access to community-based palliative care.
I have concluded that the evidence shows that not all pain and suffering can be treated by palliative care. Proponents of the bill argue that for this reason voluntary assisted dying and palliative care should be treated as two separate issues. While I acknowledge that view, I believe that they cannot be entirely divorced from each other, and I worry that without proper investment in palliative care services, some people will be driven to access voluntary assisted dying because they feel there is no other option. Voluntary assisted dying must be a last resort, not a first resort. If the government truly wants to provide people with end-of-life options, it cannot step back from the need to address the provision of palliative care.
The second major concern I have is the uncertainty about which drug will be used. I feel that we are being asked to take a giant leap of faith by simply handing over control to an implementation task force to devise and research a concoction of drugs. Most of the discussion in the lead-up to the introduction of this legislation revolved around the barbiturate Nembutal, which is used in Oregon. Nembutal is currently prohibited by the Therapeutic Goods Administration for human consumption, and two of the strongest supporters of voluntary assisted dying have questioned the government's decision about this. Rodney Syme, the vice-president of Dying with Dignity, has described it as incredibly disappointing that the government would consider a new concoction rather than negotiating with the commonwealth to allow doctors to prescribe Nembutal. While I recognise that we are not pharmacologists, we have no information about the efficacy of the drug, toxicity, administration or how it has been trialled because even the government does not know what it will be.
It felt nefarious to me that, when the bill was finally introduced, we discovered that the government had not taken the steps to negotiate access to Nembutal for this scheme. It is clear that, just as there is no consensus among members of this house, there is no agreement among medical practitioners or those who work in palliative care. Former Australian Medical Association (AMA) president, Professor Brian Owler, is an advocate for the bill; former AMA vice-president, Stephen Parnis, opposes it. I have listened to the arguments made by both.
Equally, GPs within my electorate have varied views, and I have endeavoured to consult widely with them. I met with doctors at Benalla's Church Street clinic, who I was surprised to discover were unanimously in favour of legalising voluntary assisted dying. Among the arguments they made in support of the bill was the fact that the legal framework is currently grey. Two of Euroa's doctors said the legalisation of assisted dying was contrary to their moral principles, while four others felt that there was a definite need to develop a process that enabled them to assist their patients end intolerable suffering.
I have also received correspondence from Kilmore doctor Tony De Sousa, who has very strong concerns about the proposal. In his view the bill will decrease or damage medical care and the trust between doctor and patient. Dr De Sousa wrote to me stating, 'How can you legislate against subtle persuasion by greedy or selfish relatives? That is one big myth about euthanasia — that we all belong to loving, caring families who would never wish us dead'.
On this particular point I agree that it is difficult to legislate against elder abuse, and many have raised their concerns about coercion. However, I believe that it is important to acknowledge that the Medical Treatment Act 1988 already provides someone with the right to refuse treatment. Under that act a doctor must satisfy themselves that a patient who has clearly expressed a desire or indicated a decision to refuse medical treatment has made that decision voluntarily and without inducement or compulsion. Given the option already exists to refuse treatment, or indeed to refuse food or drink, in order to hasten death it is impossible to argue that coercion and elder abuse are not already risks.
There is the potential with this bill, I believe, to provide an opportunity for greater scrutiny by ensuring that every request for voluntary assisted dying, be it approved or not, is reviewed by the Voluntary Assisted Dying Review Board.
It has been difficult to gauge the level of support among my constituents for the bill. Go Gentle Australia, one of the primary lobby groups in favour of the bill, commissioned polling across my electorate, which indicated an almost unbelievably high level of support for the bill. I have had many people approach me over the last 12 months, most of them quietly and in person, to tell me that they support the bill. Correspondence through my office on the other hand has been heavily weighted towards those opposing assisted dying. In my assessment there are many people in passive support, but on both sides I think there has been a real lack of understanding about the detail of the bill.
I cannot go through all the provisions, as there is simply not the time. However, I do acknowledge that significant effort has been made by the ministerial advisory council to put safeguards in place.
The bill sets out eligibility criteria which restrict access to people over 18 who are citizens or permanent residents of Australia and ordinarily residents in Victoria. In addition they must have decision-making capacity and have been diagnosed with a disease, illness or condition that is incurable and is advanced, progressive and will cause death. I must say that I have been most influenced by those people who have approached me personally to share their own experiences. Like most in this house I have also listened to the panel discussions and met with proponents for the bill and those who are staunchly against it.
The heartbreaking stories of those who have watched loved ones die in traumatic and painful ways are hard to ignore. One lady from Nagambie recounted how her husband, suffering from an incurable terminal illness, got up early one morning and shot himself. He informed her of his plan, but he did not tell her when he planned to end his life for fear she might be implicated. She was deeply saddened that her ability to spend his last moments together were taken away from her.
Nicola Pile from Euroa told me of her father, who had a haemorrhage or a stroke which caused a bleed in his brain. His stroke was in his brain stem, which controls many basic functions necessary for a person to survive. Nicola said he could not walk, he struggled to talk with a tracheostomy in place and required ventilation and PEG feeding. He could not even swallow his own saliva. 'Inevitably this smart, handsome man decided that he did not want to live like this anymore, but he could not legally die'. She went on to say, 'Determined to leave the world he had to refuse feeding. He slowly faded away, nursed by his family. It takes quite a long time to die this way. We were all broken-hearted'.
I was also very touched by people like John McGregor, who approached me quietly and in a very considered manner to share his views. At my request John sent me a detailed account of his experience, and I wish I had time to do justice to his and his family's story today. In the space of just three years John lost his wife's younger brother in a tractor accident, his brother's wife to a 10-year battle with brain cancer and his wife's older brother was diagnosed with motor neurone disease. His father died of Alzheimer's, his older brother was diagnosed with terminal prostate cancer and his 23-year-old son was killed in a train accident. John's wife now has a progressive neurological disorder, as yet unidentified, but her mother and her three aunts all died from Parkinson's disease. John told me, 'If this bill fails, my wife will have to live until whatever she has kills her. She is unable to make her own arrangements. If I were to assist her, I could likely end up in jail'.
Julie shared the story of watching her brother die recently from pancreatic cancer.
In our ignorance we thought that the morphine level, with the top-ups we requested when he was uncomfortable, would be sufficient to ease his death, but it wasn't. Off fluids and food, it took a week for him to die of starvation and dehydration. This, from a previously strong farming man already so debilitated. I still weep with fear that he was just kept in the state of limbo suffering somewhat but unable to tell us anything because of the dose he was on.
These experiences are awful, and I know they are just four of many. On the one hand I feel that I am letting people like John, Nicola and Julie down, but I know I also have an obligation to be entirely satisfied that this scheme is robust. I want those people who feel they are left with no option but to take their own life to have a choice about how they die, but in order for me to support the legislation the government needs to address the gaps that I have outlined.