VOLUNTARY ASSISTED DYING BILL 2019

PARLIAMENT OF WESTERN AUSTRALIA

EXTRACT FROM HANSARD (ASSEMBLY) THURSDAY 29 AUGUST 2019

DR TONY BUTI – MEMBER FOR ARMADALE.

 

I rise today to speak on the Voluntary Assisted Dying Bill 2019 and I wish to acknowledge all the hard work undertaken by the Joint Select Committee on End of Life Choices, the Ministerial Expert Panel on Voluntary Assisted Dying and all involved in bringing this bill before the house. I would also like to thank all those in my electorate and beyond who have contacted me in person, on the phone, via email or through the post to present their views.

 The nature of the conscience vote afforded to government members is one that I and my colleagues take exceptionally seriously, and I am sure all members of this house do. My journey to the position that I now hold on voluntary assisted dying and the bill we have before us has been long and convoluted. Until a few years ago, although I understood the calls for euthanasia and assisted dying, I personally was not in favour of legalising voluntary assisted dying. But since then, my research and interactions, plus examination of the bill, has seen a shift in my position. However, I still have concerns with one issue, which I will detail later in my contribution.

 I will not be relaying stories of people I know who have died an awful death or have been denied dying with dignity. In the main, my focus today is on the philosophical and legal aspects of the bill and voluntary assisted dying. Such a discussion involves issues of morality, ethics, religious belief and political and legal theory. Among members here and in the other place there may be disagreement with the title of the bill. Although terminology is important, I dearly hope we do not get bogged down in consideration in detail on this issue. As the member for Girrawheen noted, the term euthanasia literally means “good death” or “dying well” from the Greek “eu”, meaning good, and “Thanatos”, meaning death. Some people, even speakers in this debate, may argue that the process this bill is dealing with cannot be referred to as euthanasia, but I am not sure that is the case. Professor Cameron Stewart of the University of Sydney has stated that euthanasia is a general, non-legal term that covers a variety of legal and illegal behaviour and it involves voluntary assisted dying in which a person competently requests and receives help to die. Like the member for Warren–Blackwood, I also refer to the Australian Human Rights Commission paper, “Euthanasia, Human Rights and the Law”, which states —

Active voluntary euthanasia—when medical intervention takes place, at the patient’s request, in order to end the patient’s life;

 I think that compassion and love sits at the heart of this bill: love of our family members, love for our fellow community members, love for those in intolerable pain who are dying, who will soon be dead with or without assistance to bring closure to one’s life. But I want to make it clear: I dare not be self-righteous and say that love sits only with the proponents of the bill. This love can and has pulled people in opposite directions; some support the bill, while others oppose the bill. This bill is motivated by love and compassion, not ill motives, greed or money. On the radio yesterday morning, I heard a talkback caller saying that the bill is all about saving money for the government by taking attention away from palliative care. That is not so. I know the Minister for Health; I know the Premier; I know Tony Simpson, a former member for Darling Range, who was one of those responsible for bringing the issue of voluntary assisted dying to the forefront of political debate, along with others such as Hon Alannah MacTiernan, whom I also know well. I can assure members that when it comes to supporting this bill and voluntary assisted dying, those I have just mentioned are not motivated by money or budget savings; they are motivated by love and compassion.

Some people may say that this bill is all about dying with dignity, and so it is. But we could just as correctly equate dying with dignity with the rejection of a bad death. US legal academic John B. Mitchell has written —

In this bad death narrative, the person is in pain and soiling himself, with tubes and machines humming away (although, if these are life-supporting tubes and machines, the patient can request they be removed and shut off). Why must a patient endure this? Why can the patient not exercise his autonomy and choose to end this mockery of his existence with the assistance of …

What we would call voluntary assisted dying. To permit any less denies the patient the choice to die with dignity.

Lindy Willmott, Andrew McGee and Ben White, in an article published in the online journal The Conversation on 14 November 2017, reported that four major themes of objection were raised by MPs in the Victorian parliamentary debate on its voluntary assisted dying legislation. The themes were: first, the bill does not have adequate safeguards to protect the vulnerable; secondly, legalising assisted dying presents a slippery slope; thirdly, palliative care services must be improved first; and, fourthly, a doctor’s duty is to treat, not to kill. I want to tackle these objections now, as I have also heard the same objections in the lead-up to this debate, although I will leave the protection of the vulnerable to the end of my contribution, as this has a personal dimension for me.

The slippery slope argument contends that even though our model, like the Victorian model, is currently a conservative one, that does not mean it will not evolve over time. But our bill is to a large extent modelled on the Victorian model, which, in turn, is modelled on the Oregon Death with Dignity Act, which has not been amended since it was enacted 20 years ago. That is the jurisdiction we should compare ourselves with, not the Netherlands or Belgium, which have a very different system and model from what we are seeking to introduce. But in the end, it is up to the legislators of this Parliament to ensure that we do not go down the slippery slope. That is our responsibility and the responsibility of those who follow us in this place.

Opponents of the bill and voluntary assisted dying will say that the focus should be on palliative care and that only when we fix that up can we move on to looking at voluntary assisted dying. I agree that palliative care should be the main game and main focus. It is. The Minister for Health has a focus on palliative care and has increased funding in that area. Of course we need more funding for palliative care, but that will happen whether or not this bill is passed. It must also be realised and acknowledged that there will always be a small percentage of people who are dying and for whom no amount of palliative care will ease their pain and suffering. For those who are opposed to this bill and say instead that we must fix up palliative care before moving on to legislating for voluntary assisted dying, I ask: When will we know when palliative care is fixed up? If we did reach that standard, would they still be opposed to voluntary assisted dying? Some may respond that yes, they would support legislation in this area, but I believe others, for various reasons, would never support legalising voluntary assisted dying. We can do both—legalise voluntary assisted dying and improve palliative care—but remember that there will always be some who are suffering who will never find comfort with palliative care.

 Doctors should not harm, and as the authors of The Conversation article state —

This argument holds that an assisted dying bill will undermine the nature of the doctor–patient relationship, which is based on trust. Arguments in this theme also contend assisting patients to die is the very antithesis of what doctors do.

 Reference is often made to the Hippocratic oath, noting that it says, “first, do no harm.” But it must be realised that under this bill, the time of healing has passed. The person is terminally ill and will inevitably die—actually, death is imminent. What counts as harm depends on context. For example, as noted in the article on The Conversation, we do not normally think surgeons violate the Hippocratic oath when they cut into the skin during life-saving surgery, yet cutting into our skin is a form of harm. We accept this harm because it is outweighed by the fact that the surgery is life-saving. The author similarly argued that helping people die more comfortably is not a form of harm but is actually a benefit. In fact, not allowing for voluntary assisted dying may cause harm.

 Before moving on, I should mention the doctrine of double effect. That is when doctors are legally allowed to administer painkilling medication to patients even if they know that death will occur as a result or that there is a high risk of death occurring. It is not uncommon for healthcare professionals to risk administering high doses of drugs such as morphine to control pain, even though it is foreseeable that there is a reasonable likelihood that the dosage will kill the patient. The intention and motive is to control pain, although resulting death is foreseeable. This is allowed as the intention is to relieve pain and suffering. If death occurs as a result, it is viewed as incidental to the intention to relieve pain. It seems somewhat strange to allow the doctrine of double effect to occur but not allow a tightly legally controlled voluntary assisted dying regime.

When we adjourned for the lunchbreak, I was talking about the doctrine of double effect. I said how it seemed somewhat strange to allow the doctrine of double effect to occur, but to not allow a tightly legally controlled voluntary assisted dying regime.

Now I will move on to some political philosophy and also reflect on religion and faith in this debate. English philosopher John Locke’s social contract theory, which forms the basis of the constitutional structure of the United States, states that there is no right to commit suicide based on theological and conceptual grounds. Although this bill under clause 11 excludes the permissible act from being labelled suicide, let us for a moment accept the term. The basis of Locke’s theological argument was a form of Thomas Aquinas’ classic argument against suicide; that is, our lives are not ours but are God’s property. But as Professor John Mitchell states, “However convincing one may find this argument, a faith-based argument can have no purchase in a legal decision in our pluralistic society.” Mitchell was referring to the US, but Australia is an equally a pluralistic society. Locke’s conceptual concern comes out of the nature of the social contract as a mechanism to protect property—in this case, the individual person. What Locke wanted to prevent was providing a theoretical basis upon which it could be claimed that individuals have ceded to the state the right to arbitrarily kill them as part of the contract. If one’s life ultimately belongs to God and is not one’s own, one cannot give it to the state as part of a bargain for social contract. But this again, as Professor Mitchell notes, is a theological argument that an individual’s life is God’s, and such an argument has no legitimate place in our legal arena, although I fully understand some people have a strong faith-based objection against voluntary assisted dying. What I say to them is that this bill will not compel anyone to act against their faith as it is voluntary. This also goes for doctors who can utilise the conscientious objection provisions of the bill to opt out of being involved in the voluntary assisted dying process.

Professor Sonu Bedi from Dartmouth College has postulated a justification theory when discussing liberty and democratic debate. He argues for a justification theory that limits the reasons and rationales on which polity may act. We need to turn to the democratic state’s reason for acting. In relation to voluntary assisted dying legislation, it may be helpful to think about it via a justificatory constraint rather than the language of rights. Those who seek to limit our liberty to end our life must proffer a publicly available reason that is made in good faith. Currently, in most cases, the state permits terminally ill individuals of sound mind who would like to die to refuse lifesaving treatment or to remove a lifesaving tube, but the state may not allow the same patient to take drugs that will end their life. The state generally permits passive euthanasia but not active euthanasia or voluntary assisted dying. The Supreme Court of the United States relied on this distinction in the case of Vacco v Quill in 1997. The state of New York permitted individuals to refuse lifesaving treatment by removing a life-support tube that would end their lives. The state prohibited individuals only from being able to self-administer drugs to end their life. The Supreme Court reasoned —

Unlike the Court of Appeals, we think the distinction between assisting suicide and withdrawing life-sustaining treatment, a distinction widely recognized and endorsed in the medical profession and in our legal traditions, is both important and logical; it is certainly rational.

But a justificatory constraint would push against this analysis. In both cases, we are concerned with a group of individuals who are terminally ill and of sound mind who wish to end their lives. The law allows these individuals to remove lifesaving treatment to do so but does not allow them to administer drugs to do so. If the reason or rationale here is to prevent harm to those who are terminally ill, one could argue that the state should prohibit both, lest it run afoul of the good-faith requirement of the justificatory constraint. So in banning active euthanasia or voluntary assisted dying but not passive euthanasia, the state may be operating on some conception of the good life. By allowing one practice but not the other, the state says that it matters how a terminally ill patient decides to die. If they decide to remove lifesaving treatment, that is permissible. If they decide to administer drugs, that is not permissible. That seems to be based on a particular conception of the good life; for example, a good life is one that ends by refusing treatment, not by administering drugs. That seems difficult to square away with a commitment to liberal neutrality. In effect, one could argue that a ban on voluntary assisted dying is a kind of morals legislation. Who is to decide what is the appropriate moral? One could argue that these kinds of laws are all based on a particular moral or religious view of the good life, failing the liberal requirement of justification.

Currently, we allow certain individuals—for example, the terminally ill and people of sound mind— to end their lives by refusing lifesaving treatment. A commitment to neutrality means that the law should allow them to end their lives by administering drugs as well; otherwise, we are privileging one conception of the good  life—or in this case, perhaps, it is privileging one conception of the good death—over another. Then we could ask: why is one way a better or superior way to die, especially when voluntary assisted dying may cause less physical suffering than its passive counterpart?

I now move back to where I commenced my contribution, which was on the main themes of opposition to voluntary assisted dying. I now turn to look at whether there are adequate safeguards in this bill to protect the vulnerable. In the current bill there are 102 safeguards, but whether they are sufficient to protect the vulnerable is difficult to ascertain. That is why, although supportive of voluntary assisted dying and this bill in general, I await consideration in detail to see whether I am prepared to support all the clauses. The Leader of the Opposition articulated in a personal and eloquent way this morning how pressure can be expressly or implicitly placed on a person in relation to seeking to hasten their death. I do not think it will be possible to provide a 100 per cent guarantee against undue influence, but I do believe this bill can be improved, which I will outline shortly.

In relation to the vulnerable, those opposing this bill or similar bills often refer to mental illness, elder abuse and those with disabilities. But before looking at these vulnerable groups, let me briefly mention the First People, the Indigenous people of this state. Some concerns have been expressed that voluntary assisted dying is of concern for some Indigenous people and culturally a foreign concept. I would hope that dialogue can be continued with Indigenous people to allay their concerns and to ensure that the voluntary aspect is emphasised and protected. But I acknowledge these concerns, which I came across when working at the Aboriginal Legal Service of Western Australia in the 1990s. Before moving on, I should say I am not so sure about the bona fides of the Catholic Church’s attempt to emphasise Indigenous concerns with voluntary assisted dying, as there are many other areas of Indigenous concern where the church has been missing in action.

This bill acknowledges concerns about possible impacts of mental illness on the end-of-life choices and as a safeguard, a person with only a mental illness will not meet the eligibility criteria. If the person’s mental illness causes them to lose decision-making capacity, they will also not be able to access voluntary assisted dying.

What we need to do as a society is to work towards preventing suicide, and I know that the Minister for Health is keen to do so. The reasons people suicide are complex. There are a number of reported reasons for suicide, but legislation for voluntary assisted dying has not been identified as one of them. I refer members to a 2017 article by Lowe and Downie in the Journal of Ethics in Mental Health, which refutes the link and also criticises and discredits the 2015 article in the Southern Medical Journal by Jones and Paton that argued such a link. In the US, the five states that had the highest rates of suicide in 2015 were Wyoming, Alaska, Montana, New Mexico and Utah, none of which had legalised voluntary assisted dying. Oregon in contrast was ranked thirteenth. For the other states with voluntary assisted dying legislation, the rankings were: California, forty-fifth; Vermont, twenty-sixth; Washington, twenty-second; and Colorado, ninth.

 When it comes to concerns about elder abuse and this bill, I say that we need to do more to prevent elder abuse and we should look at some of the work being done in some US jurisdictions to establish special prosecuting units to specifically deal with elder abuse.

 I now turn to people with disabilities. When euthanasia or voluntary assisted dying legislation was being discussed in the UK and in Victoria, many people living with disabilities and their advocates expressed concerns. A poll done by Scope, a disability charity in the UK, showed that 64 per cent of people with disabilities were concerned about moves to legalise voluntary assisted dying. However, such a view is not universal, and UK Professor Tom Shakespeare, a person with a disability, said —

… there is already a right to refuse medical treatment. This means that people who are dying and are kept alive by interventions can refuse them, and die. Yet those who are dying but are not reliant on medical interventions still cannot control the timing and manner of … death. This is surely unfair. Why should their only choice be to starve themselves to death? … we are asking for in the UK: the same choice for a good death for people with terminal illness. It seems a contradiction that the disability rights movement campaigns for autonomy in every other area of life except this one, where it claims that dying disabled people are vulnerable and cannot decide for themselves.

Although I have some sympathy for and agree with Professor Shakespeare, I am still concerned about the bill and whether it may affect the vulnerable, be they elderly or someone with a disability.

 I will now get personal. My eldest child has a disability. Her name is Alkira and later this year she turns 26. She is in many aspects a capable person. But whether she will ever be able to independently live by herself in the future is very doubtful. When I think of Alkira’s future without me or Mandy, I get very anxious. I am very concerned as to what will happen when Alkira no longer has her mum or dad around. Unless you are in a similar situation, it is difficult to truly understand the anxiety we as parents have on that front. I would be much happier if society valued people with disabilities better than is currently the situation. I put out a challenge to members of the Dying with Dignity Western Australia organisation and all those who have been strongly advocating for this bill, including many of my colleagues in this house. The challenge is that when this bill becomes law, which I think it will, please then turn to directing some of your energies and compassion and love to improving the lot of people with disabilities in our society. Because right at the moment, we have a long way to go—and it starts with valuing people with disabilities more.

I am concerned that the bill does not prevent a medical practitioner from raising the issue of voluntary assisted dying with a patient. I am concerned that someone may take advantage of someone like Alkira and other people such as the elderly. The power imbalance between a doctor and patient, particularly one with a terminal illness, could be great. Many people are influenced by what their doctor says. I do not want to deny anyone the opportunity of dying with dignity or to not have a chance of rejecting a bad death, but I want people to self-initiate the discussion with their medical practitioner. I can see no reason for not inserting in the bill a clause that would prohibit a medical practitioner from initiating the discussion of voluntary assisted dying. If this bill becomes law, I think it is highly unlikely that the residents of WA will not know that accessing voluntary assisted dying is legal in this state. Thus, when considering the power imbalance between the doctor and the patient, I see no plausible reason for a medical practitioner to initiate the discussion. Therefore, I flag here that I am exploring the option of introducing an amendment to deal with my concern. But having said that, I believe that this bill should pass, subject to a thorough examination of the contents of the bill in consideration in detail.

This bill will give people in the last weeks or months of their life a real choice. Palliative care may provide relief for many at the end of their lives, but not for all. There are some circumstances in which pain cannot be appropriately managed. One of the issues that the bill does not outline is what we mean by mental capability or competence. I refer to a very good article by Cameron Stewart, Carmelle Peisah and Brian Draper called “A test for mental capacity to request assisted suicide”. Generally, the common law concept is in the negative in the sense that every adult is presumed to be competent and then has to prove that they are not competent. One could argue that when we are looking at providing consent for voluntary assisted dying, a stronger test should be in place. This article discusses what is needed. One example is for a legal test for competence to request assisted suicide. Firstly, the patient must be able to comprehend and retain treatment information regarding their decision to end their life. They should be able to understand and retain the extent of their illness, the available treatment, the available methods of dying and the risks of adverse effects on the method utilised. Secondly, patients must be able to weigh up the information and reach a decision. This requires patients to be able to reason by using information relevant to their decision to undertake voluntary assisted dying. The article then states —

  1. The decision should be consistent over time with past expressed wishes and beliefs.
  2. Patients must be able to communicate their choices and in cases where speech is difficult or impossible efforts should be made to find an alternative mode of accurate and reliable communication.
  3. The decision must be free from undue influence. While patients will still be able to make competent decisions when they are highly dependent on others for care, their decisions must truly be ones that they have made, rather than decisions which they have been forced to make or feel they should make to relieve others of burden. Undue influence must be assessed by having regard to both the patient’s strength of will and level of pressure being placed on the patient by others …

By legalising voluntary assisted dying—that is, allowing people access to medicines that will enable them to end their lives—for many, that in itself is a relief. As noted in the Victorian Parliament, in Oregon, approximately one-third of all people who are prescribed the medication do not actually take it. Every Western Australian should have the choice if they are terminally ill and comply with the criteria contain in this bill to end their life with reduced pain and suffering. It should be their choice, but it should be a choice free from pressure.

 

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