Voluntary Assisted Dying Bill
Please find below my speech to the Western Australian Parliament in relation to the Voluntary Assisted Dying Bill 2019. I would like to thank the thousands of people who engaged with me about this important issue.
MR Z.R.F. KIRKUP (Dawesville) [12.47 pm]: I stand today to speak on the Voluntary Assisted Dying Bill. As this bill was introduced by the Minister for Health and as I am the shadow minister for health, I take the responsive lead on it. This is the first piece of legislation that I have had such a privilege to deal with, so it is great to start with quite a challenge.
Looking back at the history of this Parliament, I am conscious that over the coming weeks we will be undertaking one of the most significant legislative considerations in decades. Regardless of the perspective any of us might have on this issue, the significance of this bill cannot be overstated. Truth be told, I initially was quite hesitant about this legislation because of not only the issue, but also the significant undertaking that may result in being only the second state in the federation to implement assisted dying as an option of end of life for the terminally ill. However, from the process that I have gone through and after speaking to thousands of people and going over this legislation a number of times independently, I am no longer hesitant or apprehensive. I am emboldened that can I play a small part in contributing to what will undoubtedly be one of the most consequential legislative processes in the near future. I am proud to participate in the public discourse, this parliamentary debate and the overall process, because I know that when generations look back on this moment, I am confident they will see the best in all of us here in as members of the Legislative Assembly. I am sure that they will see members who came together, regardless of our political allegiances, to discuss a concept that is momentous in its legislative capacity and, if the bill is passed, will substantially alter the futures of us all.
I am conscious that in considering this legislation, I do so from the perspective of having borne witness to very little death and dying myself. As the youngest member of this place, representing the oldest district in this state, I have felt a somewhat heavy burden arriving at my decision here today, given that I have had only a fleeting relationship with death. I have lost only a grandfather some 20 years ago, at an age when I remember less about the brain cancer that took his life and much more about the nostalgic feelings of warmth and love that he gave me as I was growing up. In my consideration of this bill I know that death awaits us all. The reality is that this legislation seeks to ensure that there is a control over that process that has been deprived of many in this state over the course of history. The question that has been asked is whether this is something that any of us should have any control over. Should we allow suffering to overcome us or should we try to shorten that process and have ultimate control ourselves? For those who subscribe to God’s plan, should we allow the intervention of humanity? Is this a concept that one considers that a controlled death is the ultimate mark of a dignified society or an intervention beyond acceptance?
As I stand here today, marking something like my ninth draft of this speech, this was not a decision that I arrived at easily. If we assume that the majority of people who wish to access this legislation will ultimately be the older cohort of our population, I stand here today as one who is the least likely, the furthest away—although it is by no means a guarantee—from needing to access voluntary assisted dying as an option if it becomes legislated.
Mrs L.M. Harvey: I certainly hope so.
Mr Z.R.F. KIRKUP: I do hope so. With this lack of proximity to death, I did not have an immediately firm position on voluntary assisted dying. To establish my decision here today, I did a lot of searching. Initially, I somehow hoped that I might be lucky enough to land at an immediate and enlightened position on how I might treat this bill. Some of that searching was a reflection of my own personal values, but most of the searching was to establish a reliance on the opinions and beliefs of the electorate that dispatched me to this place in March 2017. I resolved that no matter what, the perspective of my district, the district that I represent, should matter more to me and how I represent their views in this place, and that my views should take second place. I have always believed that, first and foremost, the role of a parliamentarian is to reflect the views of those we have the privilege of serving. With this in mind, I set about trying to establish how my district feels about this issue and the legislation itself. As members will see, it has been a somewhat exhausting process. Before I outline the work we did in detail, I would like to thank Amanda Burton and Gaynar Sanders from my office, and the volunteers who assisted me with the legislation—Olivia Fortune, Jenny Green, Jill Millman, Joanne Stillaway and John Robertson—for their assistance in what we have achieved together.
As elected representatives we operate these days in a world in which we are not well liked and, at times, not well respected, and there is an overwhelming view that sometimes we are disconnected from the citizens who send us to this place. If the process of this legislation has taught me anything, it is that people more than ever want their representatives to connect with them, to listen to them, to respect them and, ultimately, to act on behalf of them. At every point in the consultation I undertook, I found differences of opinion on this issue. In my district, those views were often shared publicly at town hall or community group meetings, and although there were differences of perspective, there was no lack of respect among participants. In the experience across my district, people listened to each other, they respected each other, they spoke with high emotion, they spoke through tears, they spoke with conviction and they spoke with resolve on their perspective on this legislation and, ultimately, the end of life. However, at no point did this get the better of them. Instead, they understood opposing views and resolved to treat each other with dignity. I have found this process of direct, democratic engagement one of the most enriching opportunities I have had thus far in my parliamentary career and it only further reinforced the deep sense of pride I have in serving the district of Dawesville and the people of Mandurah more broadly. I am thankful to the thousands to whom I have spoken and I am grateful that by and large we are able to have these difficult conversations in peace, without violence or intimidation.
The process that I went through to consult and establish the views of my district was divided into six elements. First, I created a dedicated page and resource on my website from the moment that the report of the Joint Select Committee on End of Life Choices was released. I wanted this to become the central depository for people in my community and a reference point for those who wanted more information. The Joint Select Committee on End of Life Choices report, the minority report, the Ministerial Expert Panel on Voluntary Assisted Dying report and the bill itself can still be found there, together with a form that people could fill out to provide me with their direct feedback. In the past month alone, more than 460 individuals have accessed that page and participated.
The second part of consultation reveals a bit of a trade secret. I am fortunate that after much community engagement I have worked to secure the email addresses of over 6 540 households in my district. As the second part of this consultation process I emailed every one of them asking for their views on this issue and this legislation. A significant level of engagement came to me via email, sometimes one line, sometimes an essay from the citizen’s perspective. As with every email I get, I read through the emails and understood and absorbed their views, and I responded accordingly.
Thirdly, we called every single household in my district where there was a resident aged 65 or over. This resulted in more than 3 040 households being called, asking them specifically how they felt about voluntary assisted dying. As with all the language I have used throughout this debate, it was a very straightforward conversation. I was conscious that I did not want people to feel uncomfortable letting me know their views and that they did not feel influenced by the manner in which I might question them to understand how they felt about this matter.
Fourthly, we contacted every person who wrote to the Mandurah Mail or the Mandurah Coastal Times, even if they did not live in my district, to ask them whether they wanted to meet or discuss this issue over the phone. In total, 23 such meetings were held. Some of those meetings were the most confronting I have experienced. All of us in this place know that there is no training or handbook for much of what we do as members of Parliament. I assure you, Mr Speaker, that little can prepare you when you have an elderly gentleman, who is otherwise quite composed, breaking down in your office when talking about the loss of his partner. As a young member of this place, and a freshman elected in only 2017, conversations like that left an indelible mark on me. Perhaps it is because we are reminded that our lives are too short and that we too will face death, these meetings I had with constituents were both emotionally crushing and yet full of hope for the opportunity that I might have to help relieve their situation.
The fifth part of consultation revolved around two town hall meetings that were conducted last week, one on Wednesday and one on Saturday, with a total of 139 people attending. At those town halls I spent one and a half hours briefing residents on my summary of the legislation as best I could. Nothing can really test your knowledge of a bill quite like conducting your own briefing and then taking questions from those who attend. It was a miniature consideration in detail process from my own perspective with people asking me questions such as why I did not include certain elements in the bill. I had to remind them that I was not the author.
Once again, as members would expect, there was a significant diversity of opinion. People such as Bill McWhirter from Halls Head told me that the legislation was too complex and that I needed to simplify it, referring to the “keep it simple, stupid” principle, and then ended, rather affectionately, calling me stupid for not doing so. Others such as Emily Pinell remain concerned about the emotional impact that this legislation might have on practitioners.
I conducted sentiment analysis polling prior to my briefings at the town halls, and then once again after my briefings, to get the views of each participant on the specific elements of the legislation. Participants were asked to provide a score indicating their level of support for this issue prior to the briefing and then subsequent to it. The final step in the process was to engage with community groups in my district on this issue. In total, we engaged with more than 30 community groups. In some instances I presented to them about VAD; in some instances they provided me with direct feedback. In all, we contacted more than 9 580 households of the 18 765 households in my district. To put it another way, we contacted approximately over 51 per cent of those in my district. The youngest person who offered their view was 19; the oldest was 92. With these numbers in mind, I can report with confidence to this place that the sentiment in my district is as follows: 7.7 per cent of people remain unsure about voluntary assisted dying and this legislation; 8.5 per cent of people were against it; and 83.7 per cent of people in my district remain in favour of voluntary assisted dying and this legislation. Although this sits a few points below the research published in The West Australian, it is still quite obvious that the overwhelming majority of people in my community support voluntary assisted dying.
For what it is worth, I began this process with a hypothesis that perhaps the soft vote on this issue was quite high and that after individuals were challenged, there would be an erosion of support.
In the sentiment analysis that we conducted during the town hall meetings, in which every person offered a score on how strongly they supported or did not support the issue prior and post my briefing, people overwhelmingly remained steadfast in their views. A small percentage of people were unsure of the legislation prior to the briefings, but in equal measure split to be supportive or unsupportive after the briefings. It is clear to me that this matter crosses many cultural, political and social divides. I know people in my community who did not support same-sex marriage, but who stood in favour of voluntary assisted dying, for example. I know, too, when I discussed this issue with members of all three of my local Liberal branches, there was an overwhelming view, even from the most conservative of my members, that they wanted to see voluntary assisted dying introduced. Given this opportunity and experience, I strongly reject any notion that there is a high soft vote on this issue, and that somehow when people are challenged to think critically about this issue, they reverse their position in droves, and it results in a 50-50 split or the like. This is not what I have seen. The reality is that when it comes to my district, and I suspect perhaps across the state, people have made up their minds on this issue. As a parliamentarian, it is now my turn. It is clear to me, as far as my district is concerned, that it wants me to support voluntary assisted dying in Western Australia, and I intend to do so.
Having gone through this legislation three times and made in excess of 450 mark-ups on the bill, I still have concerns and believe elements of the legislation need to be explored through the consideration in detail process. As a representative, I will not be at odds with the views of my community and absolutely intend to support the legislation. As a legislator, I consider it my moral responsibility to ensure that this bill is deeply scrutinised and that we explore any, and all, issues that may be associated with its design and implementation. I am encouraged that the minister has come to this with open mind and has demonstrated a willingness to work in good faith with all members of this place to ensure that the legislation passes through this house in good shape. Very few landmark pieces of legislation go through both houses without some deep investigation. I believe we all have an obligation to ensure that the Voluntary Assisted Dying Bill passes in a state of immense fitness and accountability to the people of Western Australia.
There are three areas of immediate consideration associated with voluntary assisted dying that I would like to explore briefly. Specifically, the provision of palliative care services in Western Australia, the delivery of VAD and end-of-life choices to Aboriginal communities in WA and, finally, the logistics surrounding the substance that may be used to access voluntary assisted dying.
When it comes to palliative care, although it is not dealt with exclusively in this bill, I remain quite concerned about the lack of a guaranteed funding for the provision of high-quality palliative care across Western Australia. When the Parliamentary Liberal Party had the opportunity to spend our winter conference in the Kalgoorlie district, I had the chance to meet with a palliative care nurse. She echoed my sentiments that in the regions, in particular, there is a lack of investment in high-quality palliative care. I note that the bill suggests in the principles in part 1 that all end-of-life choices should be considered and specifically singles out that there should be access to high-quality palliative care, which simply does occur in the regions.
I think it is important that while the minister seeks to pass this legislation through this place, we should ensure that there is guaranteed funding for palliative care of the forward estimates. I sincerely wish that during this debate and during the consideration in detail stage, we get an understanding from the minister on what that funding will look like over the forward estimates, and are assured that the government intends to focus on regional areas. Kalgoorlie is not that far away when compared with Broome, Esperance or Newman, but all people in Western Australia deserve equality of access to palliative care without being disadvantaged due to the tyranny of distance from our capital. I note that there are only 15 palliative care specialists in Western Australia, and that presently in places such as Royal Perth Hospital, palliative care is delivered on a nine-to-five basis from Monday to Friday.
I have made mention of the fact that Mandurah has the oldest population. With this in mind, it is my experience that there needs to be a significant investment in specialist palliative care in our city—a regional city that is just over an hour away from Perth. We know that further away from Perth, the inequality to accessing palliative care services grows. Our state deserves better than that. When I talked in my town hall meetings about the distance to palliative care services, concerns about distance and isolation came up time and again. When it comes to possibly accessing voluntary assisted dying, many residents felt they could not access practitioners in Mandurah, let alone what that might translate to in Kalgoorlie, where the waitlist for a general practitioner is over two and a half months. Many people in my district felt the bill does not properly consider how those who live some distance from Perth, in a regional city like Mandurah, or may be mobility impaired, may access a coordinating practitioner, let alone a consulting practitioner. I pointed out to people that although there are provisions for teleconference and the like, it is likely that this option will be removed from the legislation due to overriding commonwealth legislation.
Distance from Perth is an obvious concern for government in the provision of all services. However, as our minds turn to the end-of-life choices legislation, I think it is important that more effort is put into establishing guaranteed minimums, perhaps an overarching state palliative care plan led by Department of Health, and a better understanding of how voluntary assisted dying might be accessed by those who do not live in the western suburbs. We must strive to ensure that citizens are not disadvantaged because of their cultural background, their socioeconomic status situation or simply because they have chosen to live outside our capital.
In a not dissimilar theme, I would like to discuss the delivery of end-of-life choices for Aboriginal people, in particular those who reside in remote or regional communities. All of us in this place know that Aboriginal people are negatively overrepresented in nearly every key indicator for health, wellbeing and development. Detrimental health outcomes haunt Aboriginal Western Australians from the very beginning of their life. In WA, the infant mortality rate for an Aboriginal child stands 2.7 times higher than for non-Aboriginal children. Western Australian Aboriginal children are 10 times more likely to have a mother who consumed alcohol during pregnancy, resulting in 89 per cent of Aboriginal children accounting for all foetal alcohol spectrum disorder diagnoses. As we have seen with coronial inquest after coronial inquest, Aboriginal people are 2.7 times more likely to suffer psychological distress compared with their non-Aboriginal counterparts, and are highly overrepresented in our state’s suicide rate. When it comes to chronic disease, it is upsetting to consider that Aboriginal people are 3.5 times more likely to suffer from diabetes and 70 per cent more likely to die of cardiovascular disease. Ultimately, Aboriginal Western Australians die 13.4 years earlier than any other Western Australians, which is a larger mortality gap than in any other state in our Federation.
When one considers the desperate situation that our Aboriginal communities face, we must resolve to do better when it comes to the delivery of culturally appropriate and local palliative care options. We know that palliative care is not being delivered with a sense of equality in Perth and in regional areas, but the situation is far worse when we consider this in the context of Aboriginal communities, particularly those in remote settings. It strikes me as deeply unfair and deeply unreasonable that our Aboriginal Western Australians, who die 13 years sooner than everyone else, do so in an environment where they cannot access palliative care treatment—and more than that, are now being offered the option of voluntary assisted dying. We must do better. I worry that without guaranteed investment and a plan to deliver culturally appropriate and local palliative care options to Aboriginal communities, wherever they may be, opening another avenue to death may further exacerbate the vulnerabilities that Aboriginal people face. With this in mind, I know that this government, this minister and indeed all in this place, care deeply about these circumstances confronting Aboriginal people that I have described. I do not raise this issue to be controversial, but because it is depressing reality and we must acknowledge it and resolve to work together to improve the health of our First Nations people. If we legislate to provide access to voluntary assisted dying, then it is only fair and reasonable similarly to resolve to invest in better health outcomes to help extend the lives of Aboriginal Western Australians and to close the gap, so that when the end of a person’s life arrives, we can provide the option of better culturally appropriate palliative care treatment, preferably on country, or voluntary assisted dying. We can and must do better.
The final concern that I would like to raise before I finish my contribution is about the logistics around the substance that ultimately will be provided in order to bring about a patient’s death. When we consider remote or regional communities, it is imperative that we not only look at this legislation through the lens of application in the metropolitan area, but also with a view to how this will be delivered in areas that are thousands of kilometres from this place. Many of us know the unique challenges that regional cities and towns face at the best of times. In many places around this state, there are towns that do not have the luxuries that we all take for granted in Perth. There are very serious logistical practicalities to consider when we think about the nature of the substance that will be released for the purposes of self- administration.
How will it be transported, stored, accessed, prepared, administered and then disposed of when the inevitable death occurs, when we are thousands of kilometres away in a regional centre, or even further away still in a remote community? In Victoria, there are controls in place for the dispensation of this substance. I have been told that a person who receives the schedule 4 or 8 drug receives it in a locked box. The legislation we have before us is largely silent on how this will be treated in a logistical fashion and handled throughout Western Australia. It is obviously a practical impossibility to legally bind a patient who accesses voluntary assisted dying because, if they follow through, ultimately, they will be dead. As the patient can largely ignore any framework or penalties once they have taken possession of the substance, I think it is incumbent upon us, as part of our debate during the consideration in detail stage, to ensure that we explore to the nth degree what this would look like if it was to be administered, in particular at some distance from the capital.
In addition to these concerns about palliative care funding, the impact on Aboriginal communities and the release of the substance to the public who wish to access VAD, I hope to explore other areas during the consideration in detail stage, including understanding how the identity of a patient is to be established before proceeding with the first assessment; the inclusion and use of telecommunications to undertake the request and assessment processes, which may be at odds with commonwealth legislation; the training standards that will be in place for practitioners; the level of coordination and consulting commerciality that may exist with practitioners; the role of the Voluntary Assisted Dying Board; the measures that will be in place to ensure that coercion is not being exerted on a patient; and the ways that we can ensure that a patient’s mental health is ascertained before allowing an administrative decision. I intend to explore these issues in detail, together with the three main areas that I have already canvassed. I do so with a desire to work constructively with the minister to ensure that the Voluntary Assisted Dying Bill, which is important and landmark legislation, leaves this place having received the highest level of scrutiny and in the best possible condition.
The Parliament of Western Australia has a history of facing difficult decisions, having tough conversations and producing landmark legislation that often leads the nation. We do so because this Parliament reflects the broader values of Western Australia—a state and a people who embrace challenge and do not shy away from a task that may be tough or unprecedented. The debate on and consideration of this bill should be no different. It is challenging. There have been and there will continue to be very difficult conversations. However, ultimately, this is landmark legislation that, together with the vast majority of people in my district, I stand in support of. As I have outlined, I have some concerns, particularly about the existing delivery of palliative care and services, the impact on Aboriginal communities, and the logistical issues that might result from the dispensation of the substance itself. However, I consider it my job as a legislator to explore these issues and make sure that we send this bill to the Legislative Council in the best possible shape, ensuring it is up to the exacting standards that Western Australians deserve.
Starting tonight, all of us can expect late sittings. I expect I will need to bring a sleeping bag and changes of shirts to this place, and that we will be sleeping in our offices from time to time. I expect we will experience high emotion and the fatigue that comes with such a mammoth undertaking. This has taken an immense emotional toll on me already, and, in all reality, we have not even begun to get into consideration in detail. As we go about this process, I make the commitment to this house and my district that I will resolve to represent their views to the best of my ability. I will work hard to ensure that we send this bill to Government House to become an act that will ensure that all citizens have the capacity to choose how they wish to end their suffering when they are terminally ill, all citizens have their hope restored in the face of their ultimate death, and all citizens are safe in the knowledge that we have done our very best as legislators to ensure that they can access voluntary assisted dying in Western Australia.
I commend the bill to the house.