VOLUNTARY ASSISTED DYING BILL 2017 – Second reading

Second reading

Ms SYMES (Northern Victoria) (17:07:18) — It is with great respect, appreciation and understanding of the responsibilities of being a member of Parliament that I contribute to the debate on the Voluntary Assisted Dying Bill 2017. At the outset I want to acknowledge the many, many constituents and activists who have contacted my office expressing their views on this bill. However, I thank especially those who have shared deeply personal stories about agonising experiences of witnessing a terrible death of a loved one and especially those who have written about their fears that their condition will lead to that fate. I hope that this Parliament can live up to your expectations.

For the vast majority of people, the timing of their death will always be beyond their control. It will happen as part of the destiny that is their life, and most of us will not know when that will be. But for a small number of people the arrival of death is heralded by a medical diagnosis of a terminal illness that, despite the best of treatments available to those of us in the Western world, is beyond cure. I have listened to the stories of people with motor neurone disease, a cruel and insidious disease that takes apart one by one the faculties and abilities of our human selves and leaves behind an outward shell that was once an active, vibrant and loved wife or husband, daughter or son, or brother or sister. I have heard too the heartbreak of so many terminal cancer experiences, often after years of successful and hard‑fought battles against the disease, and I have heard of the sharing of the moment in time when a doctor finally utters the words, ‘There is nothing more that we can do’. This has been described to me as surreal and devastating.

I do not come to this debate sharing personal experiences that have shaped my view. Of course we are dealing with very difficult and emotional matters, and of course people have been very informative. Personal stories are of course very compelling. But for me, I have arrived at my view through a practical approach of understanding the system as it currently works and the laws that exist and how people operate under them — or in this case often somewhat around them.

My role as an MP is about helping people. My children actually explain to their friends that their mum is away from home quite regularly because, ‘Her job is to help people’. It is a really satisfying job to help people navigate the system to find solutions to their problems, big or small. But when there is not a solution within the system, we need to examine if that system should be changed. The bill before us today begs the question: can we make changes, can we do better, to enable those few amongst us who find themselves in the most horrific of circumstances to suffer less and maintain choice and control over the manner in which they finally make their inevitable departure? I believe we can and we must. As it stands, we currently allow people to stop treatment that they can no longer endure. We allow people to refuse treatment that they do not wish to try. We allow people to stop eating to hasten their deaths. We allow people to accept large quantities of painkilling drugs to induce a coma to minimise their suffering. Yet we do not allow them to make a definitive choice as to when that suffering is enough and the time is right to bring it to an end.

Of course my colleagues and I on the Legal and Social Issues Committee became immersed in the issue of end‑of‑life choices. I must say that this was not a burden; I thought it was a privilege. I would like to take the opportunity to acknowledge the secretariat who prepared the report — Lilian Topic and her amazing team. They were at the forefront of the evidence, dealing with vast numbers of people, many of them emotional and grieving, and they put a power of detailed work into that report and should be proud.

There are many things from the inquiry that will stay with me for a very long time — things that motivated me to push for an implementable system of assisted dying here in Victoria. Of particular note were the harrowing and desperately sad stories that were brought to light by the Coroners Court — stories of terminally ill individuals who in the face of declining capacity or capability or those who could no longer deal with the enduring suffering and pain had gone to great lengths to end their own lives in the most lonely and difficult of circumstances, resorting to the most violent of means, not only worried about whether their method would be successful but taking covert steps to ensure their loved ones were not involved, shutting them out of the process to protect them from criminal questioning.

There were also the health providers who told us about the legal considerations in providing high doses of medication to make a patient comfortable even when the doses would hasten their death. We learned that palliative sedation is practised in Victoria, but there is no data or regulation. The practice was described by one witness as putting someone into a coma until they starved to death.

Then there were the people who are currently dealing with life‑ending illnesses who described their preoccupation with researching their demise at the expense of making the most of the time they had left. Then of course there were the stories of hideous, protracted, painful deaths from those who treated or loved the people that endured this end. Our inquiry into end‑of‑life choices undertook some of the most challenging and difficult of discoveries, debates and deliberations to establish 49 recommendations. It is pleasing to see that the government has been doing a lot of work that addresses many of the recommendations 1 to 48 in regard to advance care planning and directives, and palliative care provision.

I note the care, compassion and dedication of those who work in the palliative care sector and commit themselves every day to minimising the suffering of the dying in one of the most altruistic and exceptional of undertakings. Palliative care physicians have confirmed that palliative care and voluntary assisted dying are not, and should never be, mutually exclusive. They can coexist, as they do in other places around the world. Whatever happens, excellence in palliative and aged care will overwhelmingly continue to be the main game in end‑of‑life care. Unfortunately, as we discovered in our inquiry, palliative care is not always the solution to pain and suffering at the end of life.

Six of eight members of the committee strongly agreed to the introduction of a legalised assisted dying framework. Of course this majority is reflective of widespread public support for reform in this regard. Phone polls across north‑east Victoria, including towns such as Seymour, Benalla, Wangaratta and Yarrawonga, showed 84 per cent to 85 per cent support for a terminally ill patient being allowed to access a lethal dose. I am 100 per cent behind recommendation 49. I do acknowledge that for many it does not go far enough — it does not help all of those deserving of help — but we decided that it was the right framework for the state of Victoria.

I commend the Minister for Health and the Premier for not shying away from this potentially divisive and difficult debate. The way Minister Hennessy has approached the development of this legislation has been exemplary. The bill was put through a process that ensured it was not just good enough but one that captured all of the concerns and importantly all of the safeguards. I would like to thank the ministerial advisory panel on voluntary dying, whose own report and 66 recommendations have extensively informed the bill and ultimately the decision before the Parliament.

Coming back to my practical approach to this bill — and it is a large bill; I do not know about the rest of you, but I have been carrying it around in my handbag for the past two weeks; it came to New Zealand with me, and I am not sure what the hostesses thought I was reading actually — what it does is it sets out the eligibility criteria, assessment process, role of the participating medical practitioners and their obligations, medication monitoring, voluntary assisted dying oversight and new offences specific to voluntary assisted dying activity.

The bill is based on extensive consultation with a vast array of experts whose coalface experience of the act of dying has provided valuable insight and understanding. The bill is about providing a choice that is unique to the individual for whom death is both inevitable and imminent whilst also respecting the personal convictions of our medical professionals and providing them with choices. There is nothing in this legislation that would compel any medical practitioner or authorised nurse practitioner to provide medical assistance in dying. This is all about finding the right balance. The bill provides a choice to a small group of people — a choice that is informed, with safeguards, checks, balances and supports to ensure that the system is robust, compassionate and protective of anyone who wishes to undertake it.

Of particular note is the experience in other jurisdictions that shows that simply knowing that you have the choice of assisted dying is immensely comforting to persons nearing death, and it actually improves their palliative care outcomes because the feeling of control helps to ease suffering and fear of a painful death, and many never actually end up taking the substance.

I support the bill in its entirety. I do not think I can add a lot by going through every element of the bill; I think collectively between the 40 people in this chamber that will be achieved. However, I would like to comment on a few issues that I know some have raised concerns about. Opponents of the bill refer to the slippery slope — an argument that I do not subscribe to, an argument that the Legal and Social Issues Committee examined in detail in other jurisdictions. While the jurisdictions we visited differ significantly in their assisted dying models, what they all have in common is a robust regulatory framework with a focus on transparency, patient‑centred care and choice. We found no evidence of the institutional corrosion that is often cited as the slippery slope. Indeed the Oregon legislation has been in place, unchanged, for 20 years.

The slippery slope argument often overlaps with the concern that vulnerable people will become victims of assisted dying. I think many have heard me talk of my background in disability services and advocacy. Throughout my research on this matter I went to great lengths to consider the impact on people with disabilities. There is a view put by opponents that the very existence of a system that allows physician‑assisted dying creates some kind of inequality in the value of people’s lives — that suddenly people with disabilities will be offered assisted suicide as their life is no longer considered worth living.

In Portland we visited a disability rights group, and I asked them about these concerns. To say that they were mortified at the question that I asked them is an understatement. They were actually in shock that a jurisdiction might possibly devalue the lives of people with disabilities simply through introducing such a scheme. They could not understand why we were there questioning them. I think they were all a bit surprised that this Australian group of politicians wanted to hear from them when they were looking at the topic that we were examining. They explained, ‘Of course not. There is no correlation between the value of the life of a person with a disability and the system of physician‑assisted dying. The biggest problem we have as a disability rights advocacy group is the fact that many of our clients are denied access to it because they find it difficult to demonstrate that they have the required decision‑making capacity’.

Much debate in the Assembly focused on the prognosis eligibility criteria relating to the person needing to have an advanced, progressive, incurable disease, illness or medical condition that is expected to cause death within 12 months. Our committee dedicated much discussion regarding the condition a person must have before being able to access assisted dying. The six‑month prognosis to death which is required in Oregon is there because of the US medical system. Doctors in Oregon told our committee that the requirement that a patient be within six months of death to access assisted dying is not at all based on medical judgement but is based on the fact that federal funding for hospice care is available to Oregonians only at that point. Of course this is not applicable in the Australian context, because we provide universal health care. Of the jurisdictions with assisted dying regimes, it is only the United States where a predicted time frame for death is required, and that is solely because of the criteria for the admission to hospice care.

The committee decided that assisted dying in Victoria should be provided only to those who are at the end of life as determined by a medical professional. We determined that they are best placed to assess whether a patient is at the end of life according to the nature of their condition and its likely trajectory. We categorically did not want to put a six‑month limit on this. We deliberately left the language open. We were told in Oregon that the six‑month cut‑off unfairly impacts on many patients. The minister in the Assembly further explained during the committee stage the considerations of the advisory panel and how they landed on 12 months. She said that what really influenced the ministerial advisory panel were the views of people with motor neurone disease (MND) and other neurodegenerative diseases, where their nerve cells effectively stop functioning properly. The nerve cells control the muscles and enable people to move and speak and breathe and swallow. This ordinarily occurs 12 to 18 months from natural death.

I would urge any member who is proposing or looking to support an amendment to reduce the 12‑month prognosis to seek some advice from the MND community. I do not think it is my role to use my contribution to outline in detail the demise of these people in their final year. It is certainly not my area of expertise, but it is fair to say that many people with a neurodegenerative disease would effectively lose the benefit of access if we did not have a 12‑month outer limit in relation to this regime.

In conclusion, I really have no idea what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be of comfort to me to be able to consider the options afforded by this bill, and I would not deny this right to others. I am voting for this bill so that last words to loved ones are sad but content goodbyes, not desperate pleas for help to die. I am voting for this bill so that medical professionals are clear about what they can do to help ease suffering and hasten death. I am voting for the bill so that those diagnosed with a terminal illness are googling ‘How do I enjoy my last 12 months of life?’ and writing bucket lists, not googling ‘How best to kill myself’ and writing suicide notes. I am voting for this bill with compassion, with care and with commitment to my obligations as a member of this Parliament, and I am voting for this bill because I want to stay true to my kids’ belief that my job is to help people.