Debate resumed from 2 November; motion of Mr JENNINGS (Special Minister of State).
Ms PATTEN (Northern Metropolitan) (09:38:44) — I feel privileged to rise to speak on the Voluntary Assisted Dying Bill 2017. As many of you know, the issue of voluntary assisted dying has been a constant part of my term here since I was elected, so it is a great privilege to see after this extensive process that this bill recognises and reflects the will of our community. I have to say it has been an absolute honour to hear the contributions of others in this house and in the other place, and I am very proud to be part of what I hope will be a historic debate. This bill is wanted by the community. This bill will ease the suffering. This bill will allow people a choice at the end of their lives. This bill will provide transparency to what is already happening.
We are talking about people’s lives. Even if it is at the very end of their life, it is still their life and all the normal attributes that a person enjoys in healthy life should apply at the end of life, like personal choice. We should not be robbing people of their basic human rights because they are dying. I think this is something that some of those supporting the ‘no’ campaign have not understood. Death is a part of life. It is not the opposite of life. Birth is the opposite of death. Life goes on around both of them. I know this debate is personal for us all, because no-one has not experienced the death of someone and the sadness that that brings.
First off I would like to thank some of the pioneers that have brought us here today, people like Marshall Perron, a former Chief Minister of the Northern Territory, who I had the pleasure of meeting yesterday; Rod Mackenzie, a former President of this house; Colleen Hartland, whose amazing work for a decade on this issue has brought us here; Rodney Syme; all the people who wrote emails, rang and signed petitions and letters that we have all received; the ministerial panel; Andrew Denton and his team; Dying with Dignity; and the passionate people who are here today from both sides. I am passionate about the rights of terminally ill people. Having, as I said, spent a large part of my time in this term thinking about this issue, I am satisfied that this bill is in line with what the community wants.
All throughout this debate I have not heard anyone dispute that the community does want us to vote for this bill. We have seen the polling, including the polling just the other day in western Victoria. We know that the vast majority of Victorians want us to be brave. They want us to pass this bill. I am satisfied that this bill creates a compassionate and safe option for people at the end of their lives with unbearable suffering. On the day I was elected I committed to upholding my promise to Peter Short, a friend and a voluntary assisted dying campaigner. He died in December 2014, but his family has continued that campaign. Today I pay my respects to another campaigner, Jay Franklin, who died at the Austin Hospital on Wednesday.
We often say in this place that it is about fairness and equality, and these are worthy objectives, but it is not always the case. We are not equally clever, we are not equally beautiful or healthy, and we certainly do not die equally. My grandmother just fell asleep and did not wake up, as did my dad. For my mother it was a bit more complicated. For my father-in-law, though, the last few weeks were pretty tough. He was a World War II pilot who had seen his fair share of death and dying. At the age of 91 he had an inoperable cancer and, as he said, he was happy to go. He said, ‘Just get me the pills. I’ve had a good life, and I’m happy to go’. ‘What is the point of me lying here in pain and putting my family through all this grief?’, he asked. When we spoke to the palliative care nurses there was kind of a sort of a wink and a nudge and they said, ‘We’ll be okay. We’ll look after him’. Then they explained in detail the various medications that they had left at the house. I understood what they were saying. We all do. Nurses and doctors around the state help in this way every day. It is unregulated, and it is open to abuse. This bill allows transparency.
We know from the coroner that many terminally ill people that commit suicide use the drugs that the palliative care staff have left at their home. So a man has served his country, has given up his life for his country — well, fortunately he did not — and is now asking to be relieved of his suffering, but his country says no. No amount of palliative care was going to change his mind or his condition. I ask those considering voting against this bill to consider this: there are still some thousands of World War II veterans in the final stages of their lives in Victoria. I can tell you that a lot of them will want the option of physician-assisted dying if it comes to that point. So will you stand in front of them and say, ‘No. You need to tough it out to the bitter end’? Is this the way we repay the men and women who have fought for our freedoms? Surely the right to die when you are in extreme pain and suffering is the ultimate democratic right.
I would like to use some of my time reflecting on how this bill came to be before us. This has been a very long and extensive process, one that I do not think any other jurisdiction has undertaken. This has not been sudden. There has been an 18-month parliamentary inquiry followed by a nine-month ministerial panel. I believe that the process has resulted in a thoughtful, well-designed bill that is uniquely Victorian. I stand here in quite a privileged position as a member of the end-of-life choices inquiry. I went on the incredible journey through end-of-life choices. The terms of reference were holistic. They covered advance care planning, palliative care, the legal frameworks governing end of life in Victoria and voluntary assisted dying. To me they are all part of a toolbox for improving how, where and when we die.
Going into this inquiry my views were pretty firm. I wanted laws around physician-assisted dying to be as broad as possible. But the more evidence we heard, the more my views narrowed. I had thought that death should be as personal as possible and that government should not play a role at all. What I learned is that this is not so clear-cut. We need regulation, we need review and we need accountability. This bill will create extensive regulations and safeguards, and I feel I have been very honoured to be part of that inquiry. We received over 1000 submissions and we spoke to a vast array of people: rabbis and priests; mothers and fathers; sons and daughters; doctors, nurses, volunteers and carers; and police, coroners, lawyers and even politicians. This bill before us is partially the result of those conversations and the evidence we received.
I would like to take a moment to thank the secretariat of that inquiry for the extraordinary work that they did. It would have taken its toll, with the compassion and patience they exhibited when dealing with a range of witnesses with a range of needs, the heartbreaking submissions that they read over and over, and the difficult phone calls that they had. So thank you, Lilian Topic, Joel Hallinan, Matt Newington, Caitlin Grover, Geetashree Shyam, Annemarie Burt, Kim Martinow de Navarrete and Esma Poskovic.
I too was privileged to hear those personal stories of caring for loved ones or patients. I thank all the people who were involved in that inquiry, because this issue is deeply personal and people shared their personal pain but also many of their happy moments. We heard about good deaths and bad ones. The committee travelled to regional areas of Victoria and five of us travelled to countries where physician-assisted dying was legal. This was a privilege that gave us I think a unique insight that many who have contributed today did not have the opportunity to gain. It might be why some people have expressed so much fear about what is going on overseas, because they have not seen it. We have.
In the Netherlands we spoke to the pioneers and proponents of assisted dying. We spoke to the opponents of assisted dying in the Netherlands, and they stated that they would not repeal the laws; they just would not use them. Then we spoke to people in restaurants and on the streets in Amsterdam, and there is overwhelming support. Here in Australia we heard about mobile death vans, but we found nothing like that. We found compassionate doctors who had long-term relationships with their patients. These doctors spoke about the pain and difficulty in helping someone to die when they had previously helped them to live for 20 years. It was painful, but they said it was also rewarding.
We heard the story of a dying woman who had lost her daughter many, many years ago. She wanted to go at exactly the same time that her daughter had died so that they could meet in heaven, so she gathered her loved ones around and at the exact moment, that exact time of day that her daughter had died, she died too. She would not have been able to do this without assisted dying. But the legislation in the Netherlands has little in common with the bill before us, and in many ways addressing a lot of the opposition to this bill is like fighting with shadows. They do not address the bill that is before us, and using extreme examples from the Netherlands, that has a very different model, is not helpful and frankly is misleading.
We were told by people in Australia that overseas doctors were killing anyone who asked. They told us doctors were killing people with mental health issues; they were killing babies. But what we learned overseas was that the accountability and transparency are extremely high — and, no, they are not euthanasing babies. We spoke to the government bodies that had overseen the legislation about how they monitored it. The reporting is transparent and extensive, and the opponents obviously agree because they have been quoting from those very reports, albeit selectively. We also met with the Royal Dutch Medical Association and medical researchers. The laws work for their society and have overwhelming community support, but the bill before us requires a greater level of reporting than in other jurisdictions because that is what the Victorian community wants.
I note that Switzerland has rarely been mentioned in this debate, and I wonder why, because if you want to highlight doctor shopping, mobile death squads and death clinics, point to Switzerland, where assisted suicide has been legal since 1941. Dignitas and Exit International provide services there for people with terminal illnesses suffering intolerably. But that does not help the arguments of the opponents of this bill, because very few people access the service. In Switzerland, assisted suicide, if done without selfish motive, is legal. Assisted suicide accounts for less than 0.1 per cent of all deaths, even with the death clinics and the squads. The bill before us is of course not the same as the legislation in Switzerland; it is not the same as in the Netherlands or Belgium; it is not the same as in Canada, California, Washington or Oregon. It is uniquely Victorian, and it has been informed by an extensive parliamentary inquiry, evidence from the coroners prevention unit and the ministerial expert panel.
I would like to touch on some of the comments made by Mr Davis in his contribution where he questioned the role of the coroner in this debate and was concerned that they may have overstepped their remit. In fact he felt that we may have been ‘bedazzled’ by them, to quote Mr Davis. I know many of us have read the coroner’s submission, and many of their reports have been quoted extensively in this debate. The case studies they presented were harrowing, and they were quite right to research how to prevent the tragic suicides of people with terminal illnesses. Let us be clear: the Coroners Court of Victoria is a specialist court, established to investigate certain types of deaths and fires. The purpose of these investigations is to consider ways that similar deaths and fires may be prevented in future. The coroners prevention unit is a highly qualified and exceptional team of professionals. They help us understand issues that arise and they make recommendations on how we may reduce these deaths. When a cohort of our community is found to be committing suicide at the rate of one a week, the coroner must investigate this, and quite rightly.
I have to say that what really struck me when listening and speaking to the coroner was the story of an elderly woman with a terminal illness who smuggled razor blades into her aged-care facility. She did not want to make a fuss; she did not want to make a mess, so she slashed her wrists and put them over the toilet, and that is where she died. That is not what we want in Victoria; that is not what the community wants in Victoria. We want compassionate legislation. The police relayed terrible accounts of miserable suicides and double suicides that they had to deal with, and it is awful for the families and friends to know that that is how the person they love ended their suffering, and for the nurses, doctors and staff who find their patients in this manner or have to deal with the consequences of a failed attempt. This will haunt them for the rest of their lives, and that is what we heard in the inquiry. We cannot allow this to continue. There is a better way, and this bill, the Voluntary Assisted Dying Bill 2017, provides just that.
We travelled to Oregon, where similar legislation was introduced in 1997. It has not changed; it has not been amended. The only thing that has changed is the number of people accessing palliative care. It has increased. In the most litigious country in the world you would expect there to have been hundreds of lawsuits, but there have not been. If you listened to the contributions of Dr Carling-Jenkins, Mr Finn and others who have spoken about the horrors of Oregon, you would expect this to have happened, but it has not. There are five of us in this chamber who know this, because we travelled to Oregon and met the government, the palliative care experts, the disability rights organisations, the doctors and the legislators. No-one wanted to change the legislation, and no-one has. There has been no slippery slope. There are no accusations of coercion. There is no concern about doctor shopping or death clinics. There is peace of mind.
If you look at Oregon’s most recent, 2016, annual report on the use of the Death with Dignity Act, it found that 102 physicians had written 204 prescriptions under the act and 133 people had died from ingesting prescribed medication, but that included 19 who had prescriptions from previous years. This represented a slight decline. The characteristics of those patients were similar to those of previous years: mostly white middle-class men over 65 with cancer. These are not the numbers of a system where evil doctors are colluding with greedy relatives.
Right now the vulnerable are committing suicide alone and often violently. Right now the vulnerable are more vulnerable. We know that assisted dying is already occurring in our hospitals. The doctrine of double effect was deeply considered and widely discussed during the inquiry. This is where doctors are legally allowed to administer painkilling medication to patients even if they know that death will occur as a result. It is allowed because the intention is to relieve pain and suffering. If death occurs as a result, it is simply viewed as incidental to the intention of providing pain relief, and that is quite right. In my opinion, though, this puts people at far more risk of abuse, because this is not monitored and not regulated. If we are worried about greedy relatives, lying carers and evil doctors, why not regulate this situation?
I would also like to address a number of the concerns members have raised about the criteria and the process, because as I listened to the debate in this house and the other, I wondered what society they live in, because it is not the one that I live in — mean, greedy relatives killing their terminally ill aunties and mothers by coercing them into telling a doctor that they would like to access medication to relieve their suffering, risking being prosecuted for significant offences under this bill and existing offences around counselling someone to commit suicide, expecting doctors to risk losing their licence and going to jail, finding independent witnesses to attest to this — and witnesses will also risk criminal prosecution — and then finding a second doctor who will also risk being charged. Frankly, there are far easier ways to get your hands on a relative’s cash, and seriously, evil doctors? If you think they are, then you should be supporting these measures to regulate them, but in my opinion doctors are the linchpin of this bill — they are our safeguards.
Dr Carling-Jenkins suggested that this was a simple click-and-tick process. Obviously we have been reading very different bills. This is an extensive process. We do not ask for two doctors, independent witnesses and the approval of an expert medical board for any other medical decision — not abortion, not withdrawal of treatment, not terminal sedation, nor any other end-of-life treatment that was discussed.
If a doctor wants to do what is called palliative sedation, there are no regulations. They do not even have to ask the patient. Of course doctors do ask patients and doctors do the right thing because doctors are conservative, doctors care about their patients and doctors care about process. But palliative sedation, while it happens regularly, is not pretty. Someone is put into a coma, and then they dehydrate to death. Putting them into a coma to dehydrate to death does not necessarily stop the pain and the suffering. In fact we heard of a man who watched his wife slowly dehydrate to death over seven days, wracked with pain and almost falling off the bed convulsing. Is that what a compassionate society does?
I do not know whether other members got a letter from Stanley John Grayson. He has a brain tumour. He was diagnosed in November 2014. His prognosis is two to five years. He was 33 when he was diagnosed, and he knows that he is going to die. He writes:
I have a cancer in my brain and it will kill me. This is inevitable. My death is not a question of ‘if’, it’s a question of how.
He does not think this is suicide.
It’s a medical intervention to stop pain and suffering when there is literally nothing else that can be done. This is of vital importance. Cancer is killing me. If I was at the point of …
assisted dying —
in a hypothetical, it’s not the doctor that is ‘murdering’, it’s the doctor that is carrying out an act of love and compassion, to stop my ongoing torture.
There have been concerns that terminally ill people who start the extensive process of requesting voluntary assisted dying will not be given a mandatory psychiatric assessment. Well, you are not given one when you buy a gun, either, and that will certainly kill you a lot more quickly. We do not ask people to undertake a psychiatric assessment to get a gun. What we do is exclude them if they are diagnosed with a mental illness, as we will with this bill. If a person refuses treatment or, in extreme cases, food and fluid, we do not insist on a psychiatric assessment. If a person wants to buy a packet of cigarettes that is going to kill them, we do not ask for a psychiatric assessment. I do not mean to be flippant about this.
We trust doctors to make life-and-death decisions. We trust doctors to prescribe medication that could kill a horse. We trust doctors. I trust doctors. But for some reason we cannot trust them to act compassionately and carefully within the strict criteria of this voluntary assisted dying framework.
I am sure we are all aware of the criteria and the process, but I think it is worth recapping quickly: a person must be over 18, be living in Victoria and have decision-making capacity. They must be diagnosed with a disease, illness or medical condition that is incurable, advanced and progressive; that will cause death; that is expected to cause death within months or weeks not exceeding 12 months; and that is causing suffering to the person that cannot be relieved in a manner that the person considers tolerable. It will exclude those with mental illness. It will exclude those with a disability unless they have a terminal illness.
My friend Jay Franklin was suffering intolerably. He barely had any intestine left. He was in and out of hospital and in constant pain. He died receiving great palliative care at the Austin Hospital on Wednesday. He would not have qualified for this legislation. He did, however, qualify for Dignitas in Switzerland.
Peter Short, who had oesophageal cancer, would have qualified under this bill, but he died in hospital comfortably with palliative care. He had made arrangements so that he had the peace of mind that this bill will bring for more Victorians, but in the end he did not need this legislation. Very few people will qualify. Despite what we have heard in this debate, we have good palliative care. But this is not an either-or situation. Palliative care can and does relieve suffering but not all suffering. The report of Australia’s Palliative Care Outcomes Collaboration confirms that 5 to 7 per cent of patients have significant unrelieved distress at the end of their life.
As I said at the beginning, sometimes death is unfair, and this debate is not about the vast majority of people who obtain good relief but the small number of people who cannot get relief. That number is small, but in gross numbers in Victoria it is probably somewhere between 300 and 500 people per year who would qualify.
We know, and I know personally, that when a dying person knows that they have the power to end their suffering when they are ready that provides incredible palliative care and comfort. We know from Oregon that a third of people who get the medication do not need to use it. While travelling we even heard anecdotally that just knowing it was available provided great comfort to people, even if they did not go through the process of accessing the medication or the approval. Just knowing it was available was enough.
A lot has been said about the 12-month period. The 12-month period is not about saying that a person will absolutely die in 12 months and therefore the medication will be approved, they will go through the process, they will get the medicine and they will then immediately use it. This is about giving people time, giving people peace of mind and consoling people who have a terminal illness and are suffering intolerably. It is likely that any decision to access voluntary assisted dying will be made after a long period of consideration. People do not rush to death. Even if you have a terminal illness, frankly, you want to live.
In Oregon the median time between a first request and people taking the medication is about six weeks to two months, but remember that more than a third of those people who request the medication do not take it at all. In the USA the time frame for eligibility is six months. This is not for medical reasons; it is because of insurance and hospice care. The vast majority of people — around 80 per cent — who access their laws are dying of cancer. As cancer is the third most common cause of death in Australia, that figure will be similar in Victoria.
That 12-month time frame in the legislation is designed to accommodate people dying of diseases with longer but equally certain trajectories towards death, such as those with neurological and cardiorespiratory failure, those suffering and dying over a period that may well exceed 12 months. For motor neurone disease there is no cure and it is particularly brutal. You know what is going to happen. You know the future. It slowly strips a person of all function, including eventually the ability to swallow and breathe unaided. To limit voluntary assisted dying to those with only weeks to live — essentially cancer patients — is to discriminate against people whose death is equally certain but whose suffering may last much longer. I think it is very important that people with diseases, illnesses and medical conditions that affect fine motor function, breathing and swallowing are given sufficient time to consider all of their options. A 12-month time frame will give them this opportunity.
It should be noted that the concept of 12 months until death sits within the existing Victorian framework and is considered uncontroversial in all other legislation. It is consistent with existing end-of-life policy documents, including Victoria’s end-of-life and palliative care framework, which is familiar to many health practitioners in Victoria. It is widely accepted by insurance companies as a time frame for paying out a policy in the event of a terminal diagnosis. A 12-month time frame is also consistent with existing clinical practice. Many health practitioners use the surprise question ‘Would I be surprised if my patient died in 12 months?’ when planning and discussing treatment and care for people who are at the end of their life.
Allowing a dying person to have some autonomy at the end of their life is the right thing to do. Assisted dying is already happening illegally behind closed doors without any regulation or safeguards. We need laws that keep up with community values and offer necessary regulations and safeguards. Palliative care is important, but it has its limitations and cannot always relieve extreme pain or suffering. In the same way that everyone has the right to refuse treatment, everyone should be able to choose how to manage their own pain and suffering at the end of their life. For many terminally ill people just having the option of assisted dying would relieve a huge amount of stress and anxiety, and they probably will not use it.
I want to hear what you would have said to my father-in-law when he said he has had enough or to Ms Hartland’s friend when the bowel blockage was causing them to vomit up fecal matter and was way beyond the reach of palliative care. Do you say, ‘Well, just suck it up while we work on getting better palliative care’ or ‘You’ll just have to go through it because if we pass a law there’s a chance that someone might misuse it’, or do you quote religion at them and say, ‘It’s your punishment for being a heathen’?
This is what this debate actually ultimately comes down to: you as a politician by the bed of a dying person in great pain and suffering, telling them why you think they should be enduring this situation. Let us not let people continue to suffer and die miserably because we do not think palliative care is perfect. Do not let perfect get in the way of good. Do not disappoint our community that expect us to reflect their views, and their view is that we should pass this bill. I commend this bill to the house.