Resumed from 16 October.
Comments and speeches from various members
HON ALISON XAMON (North Metropolitan) [12.07 pm]: I rise to make my contribution to the Voluntary Assisted Dying Bill 2019. Like others in this place, I acknowledge that this bill has generated a great deal of community sentiment. Like others, I have received hundreds, if not thousands, of emails, letters and phone calls. I have also, on more occasions than I am happy with, been cornered by individuals who wanted to discuss with me the provisions in this legislation and asked me urgently to vote either for or against this legislation. This is obviously a matter of deep public interest.
I also want to make some comments about how different the tone in dealing with this piece of legislation has been from the last time I debated this type of legislation back in 2010. Although much of the feedback that I have received has been strident, I note that despite everything I have received, I do not believe I have received one threat. That is very different from the tone of the debate that occurred nine years ago when I did receive some pretty nasty threats. We seem to have been able to progress further as a community in dealing with what is actually a very complex matter.
The Greens have a strong policy on voluntary assisted dying. The Voluntary Assisted Dying Bill 2019 largely reflects a lot of what is in our policy. As I said, the last time I spoke on this type of legislation—I am one of 14 members in this chamber who were elected at the time of the thirty-eighth Parliament—was in response to my colleague Hon Robin Chapple’s bill, which sought to bring in a particular regime of voluntary assisted dying. I particularly want to acknowledge my colleague Robin who has been a champion of voluntary assisted dying for decades. He has worked very closely on this issue with community campaigners who understand that this is an issue that is very close to his heart. When I last spoke on that bill, it was not long after my grandfather had died. That had a big effect on how I responded to the bill at that time. My grandpa had been a long-term member of the Western Australian Voluntary Euthanasia Society, which was the previous incarnation of Dying with Dignity Western Australia. He personally begged me to support this legislation when it came on. At the time that he did that, my grandfather was dying of lung cancer. He was in his 90s. He had developed lung cancer from being a prisoner of war back in World War II. He was one of the Rats of Tobruk. Although he had kicked the nasty habit of smoking not long after he returned to Australia, unfortunately those years of being a POW meant that his lungs had been exposed to the risk of cancer. The final six weeks of his life, I would argue, were six weeks he really did not want to live anymore. If he had had his way, he would have cut his life short just by that period of time. He was, for his final days, in the Murdoch Community Hospice. I acknowledge that the staff there gave him first-class palliative care. We are very lucky to have some wonderful hospices within this state. Nevertheless, even with the very high level of pain relief that he was being proffered, it was not sufficient to manage his pain and, unfortunately, he died in a great deal of pain. One of the comments he made to me when he was in the hospice that has stuck with me—I referred to it back in 2010—was the sentiment that when he was young with his whole life ahead of him, he pointed out that the state did not hesitate to let him go off to war. But he made the point that now that he was old, had lived a full life and was dying, that the state would not let him die, and he felt angry about that.
As in 2010, I will be supporting this legislation, but I also have to acknowledge that since that time, much more has happened in my life and I am not dealing with the rawness of having lost a very precious and wonderful grandfather. That means that I will approach this legislation and indeed the debate around voluntary assisted dying not without my reservations. That is some of what I wish to talk about today. I want to start by saying, however, that I am very clear that I am able to distinguish between voluntary assisted dying when someone’s life is ending and suicide. We know that modern medicine keeps people alive much longer than they otherwise would be alive. That can mean it has the effect of dragging out, particularly at the very end of life, someone’s suffering when ordinarily their time would be up. The alleviation of enormous suffering when a person is about to die anyway, in my opinion, is demonstrably different from the tragedy of a life that is prematurely cut short by suicide. I am genuinely horrified at the coroner’s assertion that about 10 per cent of people who take their lives now are doing so when they have reached end of life. I am particularly horrified because of the circumstances in which families come across the body of their loved one. We have heard from some people within this place already about the very violent and sudden ways in which people die and that they are dying alone. This also has the effect potentially of traumatising first responders who are left with the legacy of having to deal with the circumstances of that death. We also know that if it is a child in particular who discovers a body, that can have very serious implications in the form of post-traumatic stress disorder. I also know that there are far too many instances of people who are nearing the end of life anyway and attempt to take their life in order to cut short their suffering, but who are not able to complete that attempt and are sometimes left with terrible and debilitating disabilities as they reach the end of their life. Nobody can think that that is an okay situation; no right-thinking person would think that this is an acceptable outcome. I also note the genuine fear of those people who take their life, and indeed their family, that if the family is there when their loved one dies, they will be left to deal with the legal repercussions.
I note that a number of people in this place have already referred to the story of a particular advocate for VAD because she has been very vocal in this space for a very long time—that is, the story of Margo and Mike Beilby. I note that the speaker before me read out a letter from Margo. I want to make some comments about Margo’s situation because Margo, or “Mabo” as she is known to me and my family, has actually been a very good friend of mine, a very close friend of mine, for over 20 years. Margo and Mike both used to volunteer in my office on a weekly basis. In fact, Margo still helps me out in the office—thank you, Margo, you are absolutely wonderful. I remember Mike slowly dying as he was working in our office. As has been mentioned, he was slowly drowning in his own bodily fluids and the coughing that we would hear from our office in the back room as he diligently did our filing and assisted with all sorts of things, would sometimes concern us quite deeply.
Mike was a curmudgeonly old bugger. He was very clear about his own mind and about what he would and would not do. I remember when he made the decision that he was going to seriously look at options and a safe way for him to end his suffering. What has been relayed during the course of this debate is that Margo and Mike actually tried to import particular drugs from China in order to achieve a safe death. The first lot of drugs were intervened; they never got them. It was the second lot of drugs that they managed to get hold of. Mike did everything that he was told he was supposed to do. He made the video to make it quite clear: “This is my choice. This is what I’m going to do. This is why I’m doing this. I’m dying anyway.” They did everything that they were supposed to do to make it clear that this was very much Mike’s choice. As Margo has relayed to everybody, when the time came and Mike made the decision that he was going to do this, she also made the decision that she was going to refuse to leave. She said, “You have been my husband for over 50 years, why would I leave you now when you are dying?” The simple answer to that came out of what followed. After he died, she rang the police and said her husband had died. The police turned up and they asked her where she had been. She said she had been there holding his hand. They told her, “You are not supposed to say that. You are supposed to tell us that you were at the shops or elsewhere.” Being Margo, she said, “Why would I lie? I am not going to do that. I am going to be here. This is my husband.” She was absolutely stoic. It did mean that my husband, who is also a lawyer, and I then spent the next 14 weeks assisting Margo, trying to make sure that she would not get charged, because she had not been responsible for Mike’s death. He was very clear that he was going to make this decision, and good luck talking him out of it. She said to me, “Alison, I am prepared to go to jail if I have to. This is so important to me, I want to be able to make this statement.” I am pleased that she did not end up getting charged, but I think this really highlights the fear that people have when their time has come and they are dying of the risk for the people they love if they decide they want to stay and be with them. I was very privileged to give the eulogy at Mike’s funeral. As it turned out, Mike was actually a distant relative of mine, but we did not find that out until after we had known each other for about 15 years. That has always stuck very firmly in my mind.
I think there are a lot of reasons that people talk about wanting to have some sort of statutory regime around how they deal with the end of life, because it is about trying to avoid violent deaths, it is about trying to avoid unintended disability and it is also about the protection of the loved ones that they leave behind as well. I note that many people who are advocates for voluntary assisted dying are advocates not necessarily because they intend to avail themselves of this end-of-life choice, but because they want to know that the option is potentially there as no-one knows the circumstances of how they are ultimately going to die. I am really pleased that there has been so much discussion about the choice of palliative care. I am really pleased to see the recent successive announcements that have talked about a boost to palliative care. I think it is important that we acknowledge the Parliamentary Friends of Palliative Care who have been tireless in raising the issue of the need for palliative care options and how inadequate they are in this state. The work of that group is not yet done, because even with all the announcements we have had, we still do not have enough palliative care options available in this state. It is beholden on all of us to ensure that if this legislation is to pass we make sure that it does not become a default option simply because people are not able to receive the care that they want and need at their end of life. To those people who have approached me and told me not to talk about palliative care because it is a distractor and just to talk about voluntary assisted dying I say, “No, you are wrong.” As far as I am concerned, the two are intrinsically linked, and I think it is absolutely essential that we keep talking about palliative care, because we also know that people sometimes call for voluntary assisted dying because they have not been getting the services that they need. I welcome the fact that we are undertaking to significantly boost palliative care in this space. We will have to keep going though, members. We will have to make sure that we do not lose the promises that have been made and that this area continues to expand. I believe that most people are likely to choose the option of palliative care. I do not have anything to base that on; it is just an opinion. I think palliative care can be superb.
I have spoken in this place before about the death of one of my best friends two and a half years ago from cancer. He never expressed a desire to take his life. I was there the weekend that he died and, frankly, he had a superb death. He had a wonderful death. He died at home with his wife, his children and obviously us, his best friends. The palliative care that was offered by Silver Chain was superb; it was so good. I think it is true that when palliative care is offered, a lot of the time it is sufficient. That is why it is all the more important that we make sure we do not drop the ball on this and that palliative care services are always funded. I remain concerned to ensure that this option is available for anyone who wants it, regardless of where they live. I think in a very large state it is very hard sometimes to deliver the appropriate services, and that is a challenge we need to meet. I make it clear that I do not think we are anywhere near close to being able to be comfortable with where we have landed, but I accept also that for a small number of people, my grandpa included, palliative care can reach its limitations. I have heard it estimated that palliative care cannot quite deal with the extreme pain of between two per cent to four per cent of people. I hope they are the only people we are talking about here when we talk about voluntary assisted dying.
I also note that in some ways we are here talking about formalising what we know quite a lot of doctors are actually undertaking in practice. I think we need to acknowledge that. I know of one family matter. I am not going to go into detail, because I am not interested in getting anyone into trouble. I know of people who have means sometimes using those opportunities to give people that alleviation from suffering at end of life that they so very much crave. We should not try to pretend that that is not happening already. We should not try to put this out there as though it is something utterly new that has never happened. Some doctors have been coming out and admitting this. I express some disquiet at the enthusiastic fervour that some doctors seem to demonstrate towards the opportunity to kill their patients, but that aside, I think it is important to acknowledge that many compassionate and professional doctors are quietly doing this in conjunction with patients and family all the time.
I also note that many have chosen to portray this debate as simply being between people of faith and secular interests, and I do not for one second accept that that is the case. It is true that many people of faith have concerns. We have all received correspondence from a number of churches of different faiths urging us to oppose this legislation. I have also heard from many individual people of faith who have urged us to reject this legislation. I have heard the view that VAD must be rejected because to suffer is to be closer to God and those with those views are hoping that I am a god-fearing woman. Members, to be honest, I am not a god-fearing woman. I am more of a New Testament kind of gal, and my God is the ultimate loving God and is not really interested in revenge. In any event, I also recognise that those people with this faith approach are not necessarily in the majority. But many Christians and people of faith who I have heard from have expressed their distress about the possibility that people who do not really want to die will end up having their lives cut short. I think that it is irresponsible for us to simply dismiss those concerns on the basis that they are driven by faith, rather than taking them seriously. I think those concerns are very valid and we must listen. I must also note that I have heard from many Christians and people of other faiths who support this legislation. Indeed, there is a diversity of faithful Christian understandings of, and responses to, dying and voluntary assisted dying that are consistent with the affirmation that life is a gift of God, regardless of the circumstance. Many of those Christians believe they have been called to be a loving and supportive community around people in need of care as they or their loved ones move closer to the end of mortal life, and as citizens in a pluralistic culture, they also seek to care for and respect their neighbours who may not hold on to their faith in God, yet may experience fear, uncertainty, pain, grief or sometimes extreme and extended suffering as they prepare for their own death or that of their loved ones. They therefore recognise that exploring, accessing and making provision for, or conscientiously objecting to, voluntary assisted dying are all possible Christian responses. It is important to note the diversity of approach from people of faith about this as well, so I do not accept the characterisation of this debate as one of people of faith versus others.
Even though I support this legislation, I want to make a number of comments to those people who have urged me to support it, many of whom, in my opinion, have taken a rather unquestioning approach to their support of voluntary assisted dying. Even though I am voting for it, I do not necessarily agree with all the sentiments that have been put to me. I want to start with my concerns about the title of the report of the Joint Select Committee on End of Life Choices: “My Life, My Choice”. I want to say how sad and disappointed I was when I first saw that title. I recognise that that principle—the idea that it is my life, so it is my choice—is a view that has been widely espoused, and that is undoubtedly why it has been reflected in the title of the majority report of the Joint Select Committee on End of Life Choices. As a suicide prevention advocate, and as a child bereaved by suicide, I want to say what a distressing phrase that is for me. None of us are islands. When someone takes their life, it has a ripple effect, and I do not accept that our lives belong simply to ourselves. I am the mother of three children, and I am a wife, and I believe that when I chose to bring my children into the world, and when I opted to become a life partner to my husband, I was deciding to intertwine my life with theirs. If I were to take a decision to prematurely take my life, that would have a lifelong effect on them. My father chose to take his life when my brother and I were just children. Apparently, advocates of “my life, my choice” would say that it was his life, and it was his choice, to which I say, “Where was my choice? Where was my brother’s choice?”
As I have said already, I accept that this bill is not about suicide—the premature cutting short of the promise of life—but, instead, about the alleviation of terrible suffering at the very end of life, when death is inevitable. I do not accept, and I never will, the idea that just because it is your life, it is your choice, because, as humans, we are complex creatures with interrelated relationships, and I am not persuaded by arguments from people who say that if they want to die, the state has an obligation to facilitate that just because it is their choice. I also think that that sort of approach takes away from the hard work that we put into suicide prevention efforts—the millions of dollars that we invest at both a state and federal level, and the amount of human energy that goes into campaigns to try to make sure that people do not take their own lives. We know that trying to prevent suicide is trying to address issues of despair and hopelessness and, for many, mental illness.
On that note, I have also heard a couple of people advocating for the capacity to access voluntary assisted dying in cases of severe and chronic mental illness. It is not in this bill—thank goodness. Until the day I die, I will never agree to that. I believe that people with mental illness, no matter how severe, are able to engage in recovery such that they can have good and meaningful lives. To anyone who wants to write to me, giving me their stories about how their adult child has a terrible mental illness and how much better off they would be if they were not to live anymore, I am sorry; I am not your person. Go and find someone else to advocate for you because it will not be me. This debate needs to focus on the continuum of final healthcare options when someone is effectively facing entire bodily collapse and is about to die.
I have also heard quite a few people voice the sentiment that they cannot understand why there should be barriers to accessing VAD at all. I am very clear that if someone is asking the state to help them die, there must be barriers so that we can ensure that people are not coerced into taking their own lives. Threat or coercion is actually a thing. I was the Deputy Chair of the Select Committee into Elder Abuse and, as has been already articulated by other members in this place, the issue of psychological abuse is a genuine thing; it is a huge thing. That, coupled with financial abuse and the idea of inheritance impatience, was seen, in evidence taken by the committee, to be a genuine and real risk for elderly people. There is also the idea that people do not want to feel as though they are a burden, and really internalise that idea of being a burden. These are very genuine and real concerns. I do not want to see this bill become a vehicle by which we entrench ageist views towards people. Like other members, I have received multiple emails from children of elderly people saying that they want to have voluntary assisted dying because they say that their parents would not want this. That may be the case, but we do not know. I am always a bit shocked by the number of people who advocate for that. It is interesting, because people whom others may view as having poor quality of life may actually want to keep living. It should never be the case that people are able to be coerced into making these sorts of decisions. This will be really critical. If this legislation is to proceed, we need to make sure that training will be available for doctors to enable them to identify coercion when it occurs. We already know that we need to have training around elder abuse. There is already some training, but we need to have more training about how to identify risks of family and domestic violence, and training on risks around coercion at the end of life will have to be one of those things we are advocating for doctors as well.
I note that people with disability have also expressed great concern about this legislation, and I hear those concerns. I think it would be a mistake for people to simply dismiss those concerns. I want members to think about how offensive to people with disability some of the language that we use around this debate can be. We talk about, for example, a loss of dignity if people require assistance with toileting, or a range of intimate functions, and how preferable death would be to ever having to have someone assist with toileting. I am going to make it clear that many people with disability require assistance for their whole lives with personal, intimate hygiene, and I want to ask whether we are suggesting that those disabled people are devoid of dignity. Is that what we are suggesting? Or worse, are we suggesting that they would be better off dead? I certainly hope not. Good friends of mine have expressed their frustrations about the way in which some people have used this language in this debate. Their lives have inherent dignity. Whether because of illness, childbirth, injury, disability or terminal illness, we may need help, but that does not make us inherently devoid of dignity. Likewise, we talk about wanting to end life because of pain. Many disabilities bring a lifetime of pain, but that does not mean that people who live with permanent or chronic pain wish to die, so let us be careful about how we use that language. The language of suffering is also highly subjective. One may lose all physical ability but that does not mean that one cannot live a joyous life.
Probably the most dangerous language we use for people with disability is that of burden. Advocates of voluntary assisted dying often say that they want to ensure that they do not become a burden for others, and that is often a critical point in their reasons for wanting the state to assist them to end their life. That is the slippery slope that people with disability fear. Far too often, people with disability are made to feel that they are a burden. We see a systemic denial of critical medical care when individual doctors make a determination, consciously or not, that someone’s life perhaps does not warrant saving. This has emerged in multiple coronial inquiries, as well as in the lived experience of people with disability and the families of people with disability. People with disability are particularly concerned about the language of burden. Language matters, but for those advocating for voluntary assisted dying, I point out that the safeguards matter as well.
To those who say that the legislation is too stringent, I say that if someone is going to ask the state to help them to die, it is absolutely incumbent upon us to ensure that those who do not want to die, do not die, and that those who are pleading for their lives to be recognised as having inherent value are heard. The same concern can be extended to Aboriginal Western Australians, who have also expressed concerns about the message it may send about the value of their lives. We put a lot of effort into trying to save the lives of Aboriginal people, whether because of poor health outcomes or the disproportionate number of First Nation people who take their own life. We need to listen when Aboriginal people say that they are confused about what message this will send. We need to make sure that our health services continue to be trusted; that needs to be at the forefront of our consideration. We also need culturally appropriate training and professional development, co-produced by Aboriginal Australians and delivered by Aboriginal Australians. I hope the government recognises that it needs to do that.
I remain concerned about the issues for regional Western Australians. We will talk more during Committee of the Whole House about ensuring that regional Western Australians are able to access appropriate palliative care— which I have already spoken about—and appropriate advice, services and specialists. There is clearly a gap that will have to be looked at, and that challenge will have to be met. As I have already said, I do not understate how much of a challenge that is; it has always been a challenge to try to deliver appropriate and adequate services within a state as large and remote as Western Australia.
I note some of the concerns that have been raised about doctors—that there may be a tendency with some doctors to flag themselves as being the people to go to if people want to ensure quick access to voluntary assisted dying. These sorts of things happen. I recall when my children were little that there were a number of doctors who put themselves out there as being the people to go to if someone wanted to get a conscientious objection form for vaccination; they were the go-to people. We know that these things occur within the medical profession, so we will have to be careful that when decisions are made to end life—because there is no turning back from that—they are made in the most sober and thoughtful way that medical professionals can make possible.
I also flag the concerns that have been raised with me by mental health professionals. They are particularly concerned about the lack of rigour in the assessment of someone requesting an end-of-life option because they have developed a mental illness, are deeply distressed and are experiencing a mental crisis. We should not ignore that; I think that is a genuine concern. As I have already said, I would never support voluntary assisted dying for someone who wants to die because they have a mental illness, although I recognise that if someone is depressed because they are dying, it does not necessarily mean they are not fully able to make a conscious decision about end of life. It is important that we get that balance right and ensure that people are not requesting to die for the wrong reasons.
I have also been approached by people who have said that it would be out of line for me to move amendments to the legislation, that I simply have to support the bill in its current form, and that it would be outrageous for me to even contemplate anything else. My response to that is that they are wrong. As members know, I propose amendments to a lot of bills in this place. Why I would suddenly renege on my responsibility to scrutinise legislation with one of the most important bills that this Parliament has ever debated, defies logic. I will not be taking that approach. Although I have listened to people who are both vehemently for and vehemently against the legislation, I have also listened to people who are quietly supportive of the overall principle but have nevertheless expressed significant disquiet about unforeseen implications. Therefore, I think it is very important that I listen attentively to those concerns.
This is not a black-and-white issue, and this bill was never going to be a take-it-or-leave-it matter. It is my role to be party to the crafting of legislation that the chamber should endeavour to make as safe as it possibly can be. There will obviously be debate about what that will look like or, indeed, whether we can ever achieve a point of ultimate safety. I am frankly offended by the suggestion that I should not even consider proposing amendments, let alone vote for amendments, even if I am strongly of the view that they are necessary improvements, because of course I will.
As I made clear at the beginning of my contribution, I will be supporting the second reading of this legislation and, most likely, the third reading, unless someone moves an amendment to include voluntary assisted dying for people who want to die because they have mental illness, in which case I will be out. But I will also carefully contemplate every amendment and vote with my conscience, as is my right. I understand that this legislation will dramatically transform our legal and health landscape. It challenges us as a community and it is a significant shift in the way in which we view and approach life and death. Anything less than the most thoughtful and considered scrutiny of this legislation would constitute a major disservice to the Western Australian community. With those thoughts, I look forward to the committee stage, when we can go into detail a lot more. I commend the bill to the house.
Comments and speeches from various members
Debate interrupted, pursuant to standing orders.