VOLUNTARY ASSISTED DYING BILL 2017

2nd Reading Speech

16 November 2017


The Hon. ADAM SEARLE ( 16:02 ): I support the Voluntary Assisted Dying Bill 2017. This bill establishes, in the safest and most protective way provided by any like regime of which I am aware, the right for certain terminally ill persons to request and receive assistance to end their lives voluntarily, with medical help, by the administration of a lethal substance. Importantly, patients must take the final step themselves. The capacity for a spouse, family member, or friend to ad minister the lethal substance present in an early draft is not present in this bill. A patient seeking assistance will be required to self-administer. When a patient is unable to do so, only a qualified doctor or nurse can assist. Medical practitioners, health facilities or healthcare providers have the right, under this bill, to conscientiously object to providing assistance.

This legislation touches on a most difficult social, legal and personal issue because it goes to what remains in our society a great taboo—a frank discussion about death, about the end of life, in circumstances often involving pain and great suffering for individuals and their families. Any debate, whether in our society or in a parliamentary chamber, on this matter of conscience will be a little raw and difficult for participants and for anyone listening. Like many others, I do not come to this debate with a completely open mind. Although this is a matter of conscience and members in this place will be able to exercise a vote not constrained or dictated by party, we all come to this matter shaped by our own lives and experiences .

In 2013 when we last debated and voted on a matter of this kind, although I voted in favour of it I was still tentative and a little uncertain. But the more I read and the more I talk to people, whether they are laypersons or experts, the more certain I become that a measure of this kind is not only necessary and right but also the best way to reduce suffering. I note that individual members in this place bring their own social, philosophical and religious sensitivities to the debate, and I respect that. It is important when we debate matters of conscience that whatever our views we are respectful to one another and to those outside this place in relation to t hose differences of opinion. If we conduct ourselves in that way on matters like this we will be exhibiting Parliament at its best.

Australia was the first place in the world to pass a law giving terminally ill people the legal right to be helped to die— in 1996 in the Northern Territory. But with only four people being able to use the law it was rendered inoperative the next year by the Federal Parliament on the proposal of the Howard Government. That was more than 20 years ago. Since then the organisation Go Gentle stated in 2016 that there had been 28 unsuccessful attempts to pass a similar law in various Australian states. A twenty-ninth attempt is underway in Victoria and I think this is the thirtieth attempt. Over that time, opinion polls in this country have continued to show overwhel ming and growing public support— at 85 per cent now— for assisted dying to allow for better choice at the end of life.

It is perhaps worth noting that surveys on the matter consistently show high levels of support, even amongst those persons who are religious. A national Newspoll survey in 2012, for example, showed that 88 per cent of Anglicans and 77 per cent of Catholics agreed that a doctor should be allowed to meet a request from a hopelessly ill patient for assistance to die. refer to the earlier contribution of the Hon. Lou Amato who noted that the division of opinion is divided in the community. There are differences of opinion but I believe that a consensus has emerged.

Like the majority of Australians, I believe that terminally ill persons should have the right to choose a dignified end to their life. The alternative, which we now have, is that many are condemned to suffer extreme and often prolonged physical and psychological pain  pain for which there is often no relief. Death is complicated and difficult . We as a society are not good at talking about the end of life. We do not want to have to face it and we shy away from dealing with it but many people do not have the luxury of choice in the matter. But they are not suicidal. We are not discussing assisted suicide. Suicide is when a person wants to die. The people who are suffering and who we are discussing today do not want to die but t hey are dying anyway. The prospect of doing so  that journey of pain, loss of autonomy, dignity and quality of life  can fill those involved with terror andmisery. Surely those facing this prospect deserve to be able to exercise control over how much they suffer as they near the end of their life .

Death is unavoidable but we can decide to treat those who are dying with more compassi on and allow them more choice. I believe we can no longer ignore giving those patients whose death is close the right to ask for help if their suffering becomes unbearable and untreatable  to have a choice about what happens to them at the end of their lives; to choose to go a little earlier, peacefully, and on their own terms. Regardless of one’s views, this debate is about respect. It is about compassion It requires empathy a nd it requires courage. It can be very painful to watch someone we love endure those last weeks and days. For those who have experienced it, it is not something that can ever be forgotten or recovered from. We have heard many stories of those who have watched their loved ones die in debilitating agony and fear.

Like many, my views have been shaped not only from what I have read or heard but also from my lived experience. My father died of cancer over a six- month period. The treatment of his pain was not always successful, and came at the cost of quality of life . The best treatment he had—medicinal cannabis— is not legally available in this State today. I note this Parliament recently rejected measures to address that problem. My uncle died of m otor neurone disease over a two- year period. Had he not lost the use of his arms, he would have taken his own life. In his last days he begged his wife and my mother to help him to die. They, of course, did not. He slowly suffocated and then drowned as a result of his illness. But while he suffered he was not in pain that could be treated—morphine was not needed— and his end was terrible.

A close family friend living in Switzerland recently died from ovarian cancer. Anyone who knows that illness would be aware how dreadful and untreatable it is at the end. While she was registered with the well-known facility Exit, she was unable to access its services. Her health deteriorated so fast that the treatment of her pain with morphine meant she lapsed in and out of consciousness and therefore could not satisfy the requirements of being of sound mind or giving informed consent. That should give those with reservations about this bill some comfort that the legal frameworks for assisted dying work. Nevertheless, knowing that the option existed provided significant comfort for her and her husband during her last months. Many people have similar stories about the passing of their loved ones.

Without better options available to them, without the peace of mind of a painless death, people are left to resort to often painful and sometimes unsuccessful ways to end their lives before enduring more pain and suffering. Assisted dying is already happening in Australia, but without proper regulation, oversight and accountability. That is also unsatisfactory and dangerous. We should regulate the process to make it available for all who need it in a proper, safe and medically supervised way. This is what I have heard from medical practitioners, nurses and those practising palliative care. As the Hon. Walt Secord noted, medical and allied health care professionals are divided on this issue, as is the wider community, although I believe it has a high level of public support. In this matter I am guided by what I believe will result in less suffering based on the available evidence.

In undertaking this task we are fortunate to have the benefit of drawing on overseas knowledge and experience from Oregon in the United States and countries such as Canada, Belgium, Switzerland and the Netherlands. We know what works and what does not. We know the strengths, weaknesses and controls in those long-running systems from years of thorough study and review, as well as debate from all sectors of the community and those involved in the process. We can take the best parts of all those approaches to create the best law and practices possible.

This bill is a result of the efforts of the NSW Parliamentary Working Group on Assisted Dying, made up of members from across parties and Houses, and many in the community who contributed to this process. I commend the members of the group who for two years worked diligently and conscientiously on the construction of this bill to ensure that we would have the most safeguarded eligibility criteria and processes for requesting this assistance than any other proposal of its kind. It is careful and measured. It is reasonable and extremely well supported by evidence. It means that the risks raised against assisted dying—of exploitation and pressure being brought to bear on the aged, the disabled, those living with mental ill health or persons who are otherwise vulnerable—are simply not present in this bill. In order to die through the processes offered in this proposal affected persons really will have to want to avail themselves of it.

Those members concerned with the magnitude of this decision, which some have said is about life and death, should be aware that this is not a new thing for us as a Parliament. We do it all the time. Each time we allow a budget to pass without adequate funding for life saving measures—for example, in palliative care and mental health services in our health system—we permit life and death to be in the balance, whether or not we want to acknowledge it. Perhaps a more direct and recent example is the Terrorism Legislation Amendment (Police Powers and Parole) Bill 2017, which confirmed in certain circumstances the right of police officers to shoot to kill. Members should read the contributions made in that debate. I stand by my vote on that matter. Unlike that legislation, this bill does not authorise one person to take the life of another. It permits persons facing the end of their life to take control and to depart on their own terms.

Outline of the Bill

To be eligible to request and receive assistance from a medical practitioner, persons must be aged 25 and over, and suffer from a terminal illness or condition that is likely, in reasonable medical judgement, to end their life within 12 months. They must be experiencing severe pain, suffering or physical incapacity to an extent they deem unacceptable.

The patient must be provided information by their primary medical practitioner relating to the medical treatment, including palliative care, counselling and psychiatric support and measures for keeping the patient alive, that might be available to the patient.

In order to receive assistance, eligible patients must satisfy two medical practitioners, including a specialist, that they suffer from such an illness or condition.

In addition to this, an independent qualified psychiatrist or clinical psychologist must also confirm the patient is of sound mind, has decision-making capacity, and is making their decision freely and voluntarily and after due consideration. This will rule out persons suffering only from depression or other forms of mental ill health from participating in the regime afforded by the legislation.

There is a built-in delay or ‘cooling off’ period of 48 hours elapsing between the completion of the certificate of request and the provision of assistance.

There is a right for persons or health care providers to conscientiously object to being involved in the provision of assistance, and there will be no criminal or civil liability for people who act in good faith who participate in the provision of assistance or who refuse to participate in the provision of assistance.

Just as patients should have the right to make decisions about the end of their lives, doctors will have an equal right not to participate if they have a moral objection. This Bill protects both rights.

As an additional layer of protection, the Bill also establishes a framework for judicial review for any applications arising from the Act – that is, close relatives (parent, sibling, child or spouse/partner) will have the right to challenge any such decision in the Supreme Court. Any challenge is limited to whether the patient satisfies the eligibility criteria, did not possess the decision-making capacity, or that the request was not made voluntarily and after due consideration.

A person can, of course, decide not to proceed at any time.

 

I understand there are those who are fundamentally opposed to the legalisation of assisted dying. I respect that. No clauses placed in legislation will be able to meet their concerns. However, we must not simply raise endless hypothetical scenarios about things that could happen under these laws as proof that it cannot ever be safe. Canadian Justice Lynn Smith confronted this in her landmark 2012 decision that paved the way for assisted dying laws to be introduced in her country. She said:

“It is unethical to refuse to relieve the suffering of a patient who requests and requires such relief, simply in order to protect other hypothetical patients from hypothetical harm.”

I agree wholeheartedly. I will address two of the main groups of arguments that are often raised against voluntary assisted dying so that the public debate is not perpetuated by myths and misconceptions around this critically important issue.

The first is the argument that voluntary assisted dying is a slippery slope that threatens the disabled, elderly and vulnerable. We have also heard the myth that it can affect society’s belief in the sanctity of life, leading to mission creep. The theory warns that legalising voluntary assisted dying would lead to more people than intended pursuing that avenue. It warns that it would expose the most vulnerable in society—people with a disability, dementia patients and the very frail—to an increased risk of assisted suicide through coercion in the belief that they are not valued by society or that they have become a burden.

Let us be real about this. There is simply no evidence from jurisdictions that have legalised assisted dying to give anyone any concerns that the elderly, disabled or vulnerable are at risk of being prevailed upon to depart earlier. There is no evidence to that effect. Opponents also argue that such legalisation would foster a cultural shift towards devaluing human life and would implicitly condone life-ending acts that could lead to doctors or family members feeling justified in ending life without explicit consent. Again, there is no credible evidence of any increase in the incidence of life-ending acts outside the law in those jurisdictions. The fundamental safeguards in this bill that the Hon. Trevor Khan outlined, such as the strict eligibility criteria, the required sign-off by two medical practitioners and an independent qualified psychiatrist or clinical psychologist which are subject to applications to the Supreme Court by close relatives, should satisfy fears of such slippery slope theories becoming reality under this legislation.

There is also the argument of mission creep—that the eligibility criteria will be widened over time, based on overseas experience. I remind members that in other countries the government has driven the initial laws and the changes. In our context these laws are appropriately the result of non-partisan and free votes exercised by members of Parliament. That is an important safeguard that should provide comfort to people in this Chamber and in the wider community. I urge members to make their decision on what is in the bill, not what might be proposed in 10 years or 20 years.

Secondly, there is a myth that palliative care can relieve all suffering. I am firmly in favour of significant improvements to the quality of and the access provided to palliative care. That should be done regardless of the debate on this bill. While assisted dying is contentious, access to palliative care services should not be. Palliative care is about enhancing quality of life through health care and support of people with a life-limiting illness. It is provided by and informed by professionals who specialise in the field. It is an essential component of a modern healthcare service and an increasingly important part of the wider health and social care systems. However, we know that the approach of NSW Health to planning and evaluating palliative care is not effectively coordinated. There is no overall policy framework for palliative and end-of-life care, nor is there comprehensive monitoring and reporting on services and outcomes. In a recent report the Auditor-General stated:

NSW Health has a limited understanding of the quantity and quality of palliative care services across the state, which reduces its ability to plan for future demand and the workforce needed to deliver it … At the district level, planning is sometimes ad hoc and accountability for performance is unclear.

We also know that funding for these much-needed services is not adequate. New South Wales is painfully short of palliative care specialist doctors and nurses, particularly in rural and regional areas. Everyone who needs palliative care should receive it. No-one should be excluded, certainly not because of poor planning or limited funds. Palliative care services in Belgium, Netherlands and Oregon have markedly improved since similar laws were introduced. I hope the same will occur here.

Whatever happens with this bill, I urge the Government to implement in full all of the Auditor-General’s recommendations for a better resourced, better respected and better valued palliative care system. As earlier speakers have identified, the challenge is for us to ensure that the Government invests more in palliative care, particularly in remote and regional locations. Many members in this and the other place—including the present Treasurer, who has written an opinion piece opposing this bill—are in a position to achieve that outcome. I look forward to seeing a massive increase in the funding and availability of palliative care in next year’s State budget.

Importantly, palliative care does not work for everyone. With terminal illness there can be suffering for which there is no available relief. Even the best palliative care cannot alleviate all the pain, nausea and extreme discomfort some people experience at the end of their lives. The palliative care sector internationally, including Palliative Care Australia, has acknowledged this. As past president of the Australian Medical Association Dr Brendan Nelson put it, there is “a small group of patients for whom no amount of medical treatment is going to relieve their suffering”.

Latest figures from the Wollongong University Health Services Unit, which collects data from 106 palliative care units across Australia, show that one-fifth of people in their last 24 hours of life died in moderate to severe pain despite the best efforts of palliative care providers. We must bear in mind that not all those with a terminal illness are in physical pain, but they may lose their autonomy, their control over their lives and their access to and enjoyment of all the things that make life worthwhile for them. When they lose this, and when death is imminent and the end will be miserable and usually painful or involving great suffering, why should we deny them the choice of avoiding it?

Why are we forcing people in that circumstance, already so vulnerable, to have an uncertain and undignified end to their life? Where is the humanity in that? Where is the decency?

This bill is all about alleviating that suffering. Let us be clear: This is not a debate about palliative care or voluntary assisted dying. This is about incorporating the option of voluntary assisted dying into our palliative care framework for a more comprehensive services for all patients. Voluntary assisted dying will not diminish palliative care in this State; it will complement and improve it, as it has done in many jurisdictions where voluntary dying has been legalised. As the man acknowledged as the “father” of palliative care in Australia, Senior Australian of the Year 2013, Professor Ian Maddocks, said:

“If compassionate and loving care towards patients and families is what palliative care is all about, and assisted dying is part of that. It is time the profession dealt with it.”

 

This bill is about granting terminally ill people the right to make a choice about how they live the final stages of their life, and how and when they wish to die. It is an intensely personal matter that no-one wants to find themselves or a loved one in a position to have to consider, but the reality is that many families must do so. It is for them that we should support this bill so they can decide for themselves what is best for them at that critical time. If terminally ill people are done fighting an unwinnable war, they should be given the opportunity, if they wish, to say they have had enough to alleviate their physical and mental anguish and distress in the face of further unnecessary suffering and deterioration.

The outcome of this debate should be based on sound evidence, well- reasoned arguments and informed by the wishes of the community, and with the knowledge that this bill has some of the most rigorous safeguards and protections, and enforces strong monitoring procedures and levels of compliance to counter the fear of the misconceptions I have outlined earlier. If one would not use it, one does not have to access this law. But have the humanity not to deny others the chance to pass away peacefully with dignity, in a medically supervised manner. It is not about imposing anything onto any other person. It is simply about making available another palliative care option for those with unbearable terminal suffering. It is about giving them the option; putting end- of-life decisions back in the hands of already dying patients—a choice for each eligible individual, about that individual, by the individual. That is why I will vote for this bill. Frankly, it should be their choice, not ours.