Published on: November 2021
Record: HANSARD-1323879322-120558
Voluntary Assisted Dying Bill 2021
Second Reading Debate
Debate resumed from 14 October 2021.
Mr DOMINIC PERROTTET(EppingPremier) (10:27:26):
— I oppose the Voluntary Assisted Dying Bill 2021. This time last week I was in the last place that many of us would want to be: in a hospital, next to a bed, visiting a patient with a terminal illness. That patient is my grandmother. She is over 90 years old and now she is dying of pancreatic cancer. As I sat next to her, holding her hand, I could tell that she was in great pain and that she wanted it to be over. I got a sense, as much as anyone can, of why those in such pain would want to end it quickly. I completely understand what motivates those who have to sit powerless and watch their loved ones suffer. In some ways, that can be the most unbearable pain of all.
This debate is not abstract for me. It is very real and very personal, just like it is for many of us in this place. People will come to this issue from their different experiences, their perspectives and their backgrounds. We will all tell our stories but we will all speak from the heart. But when it comes to suffering, it is to our hearts that we must turn because the answer to suffering is to not offer death, but care, comfort and compassion. A strong society protects and cherishes its most fragile members. This debate today is not about the details of the bill that is in front of us. It is not about the strengths or weaknesses of the safeguards, or the rights of medical practitioners, or the technicalities of who qualifies and who does not. It is so much bigger than all of that. This debate is fundamentally about how we treat that precious thing called human life. Our answer to that question defines what kind of society we will be. This bill at its heart enshrines a new principle—that we can intentionally help terminate the lives of certain people to end their suffering.
Make no mistake, this is a culture-changing decision. Once we accept the principle of this bill, we cross a line and nothing will be the same as we will have started to define the value of life. It turns on its head a bedrock of our ethics—that we help, not hurt; that we offer hope, not harm. That is why every single member of this place needs to think very carefully about the ramifications of this bill because no safeguard can stand in the way of the fundamental shift we are contemplating here. Paul Keating called this our threshold moment "an unacceptable departure in our approach to human existence".
If we cross this threshold, this Parliament should be under no illusions as to what we would have done. All we have to do is look at the places that have taken this journey before us. In Canada, assisted dying was first legalised in 2016. It was restricted to terminally ill patients, just like the bill we are debating today. But this year, Canada's Parliament passed an amendment. The Government of Canada's website on who is eligible for medical assistance in dying states:
You do not need to have a fatal or terminal condition to be eligible for medical assistance in dying.
The Guardian
Now, terminal illness is no longer a requirement for those seeking euthanasia. In Belgium, euthanasia has been legal for nearly 20 years. It too started with those who were terminally ill or had incurable diseases. But in recent years, many cases of euthanasia involved people whose deaths were not imminent. It is the same story in the Netherlands. Assisted dying laws were initially limited to those suffering incurable physical pain. Then people suffering psychiatric disorders and dementia were made eligible. Then certain disabled newborns could be given drugs to end their lives. Last year the Dutch Government approved plans to allow euthanasia for terminally ill children aged between one and 12. Professor Theo Boer, a member of one of the Netherlands' euthanasia review boards, told in 2019:
The process of bringing in euthanasia legislation began with a desire to deal with the most heartbreaking cases ... But there have been important changes in the way the law is applied. We have put in motion something that we have now discovered has more consequences than we ever imagined.
We cannot say that we in New South Wales were not warned. The health Minister responsible for the Netherlands' 2001 law has said it came in far too early and that medical care for the terminally ill declined after that law came into effect. But recently, the idea of voluntary death has gone even further.
In 2016 the Dutch health and justice Ministers proposed a law to allow assisted suicide for healthy adults over 70 years of age who simply consider their life complete—no terminal illness, no incurable pain, no psychiatric conditions. It has not been allowed yet, but it is only a matter of time, with a similar bill put to the Dutch Parliament last year. This is also voluntary assisted dying—the same concept we are debating today—just with fewer restrictions attached. The point is, wherever assisted dying is allowed, the same assurances are always given, but the same path is also followed. The bill we are voting on today sets out pages and pages of limits, safeguards and restrictions, just like the ones in other countries did as well. But as history demonstrates, none of those elements are set in stone. If we pass this bill, the legacy of this Parliament will be to open a door that no‑one can close. That is not the future we should want for New South Wales. But that is the future we will get by voting for this bill.
This proposed law does not just impact those who may choose assisted death; its consequences are far more wide reaching. Supporters of the bill say it is necessary to relieve pain and suffering. But the evidence shows something quite different. In Oregon, in the United States, assisted dying has been legal since 1997. Every year patients are asked their reasons behind their decision. Last year, for more than two-thirds of those people, uncontrolled pain was not even mentioned. More than nine in 10 said they wanted to end their lives because they feared a loss of autonomy. We are failing as a society if we accept that loss of autonomy is a legitimate reason for a person to end their own life. But that is exactly what a law like this does. It accepts the premise that our dignity is determined by our autonomy, but that is not the case.
Perhaps this problem is unique to Western culture, with our focus on individualism, rather than Eastern cultures, which have a greater focus on family and community. This focus on autonomy has also concerned disability groups. The late advocate, comedian and journalist, Stella Young, once wrote:
As a disabled person, I'm accustomed to conversations about quality of life and dignity. Specifically, I'm accustomed to assuring people that my life is worth living. I'm short statured, a wheelchair user, and I frequently have bone fractures. … I've lost count of the number of times I've been told, 'I just don't think I could live like you,' or 'I wouldn't have the courage in your situation'.
Assisted dying helps legitimise the idea that life is not worth living if you have to live like Stella Young. The reality is that our dignity is not diminished by disability or any suffering we endure. Our dignity is in our humanity. But it is not just the disabled who are worried; other vulnerable groups also have concerns. Speaking on behalf of First Nations people, Labor Senator Pat Dodson has said:
Where First Nations people are already over represented at every stage of our health system, it is irresponsible to vote in favour of another avenue to death. Paving the way for euthanasia and assisted suicide leaves First Nations people even more vulnerable, when our focus should be on working collectively to create laws that help prolong life and restore their right to enjoy a healthy life.
Then there are those who are sick, but already feel like a burden to those around them and the pressure—intentional or not—that may arise. As Joe Hildebrand once wrote:
More important than any individual's 'right to die' is the right of all of us to be free from any pressure to die ... If you legalise euthanasia, if you institutionalise the concept that people should be weighing up the pros and cons of their own existence, that pressure is inevitably going to follow.
People battling vicious diseases or just the onset of time may start to feel selfish for doing so, when in fact the will to live is the most fundamental and decent desire within all of us.
The bill also sends the wrong message to those among us who have lost hope, regardless of whether they are terminally ill or not. We all have family members, friends, colleagues—people we try desperately to rescue from despair. We create support networks, counselling and means of intervention. The RU OK? initiative compels us all to look around at the people in our lives and ask if they are okay. The whole point is that we expect some of them to answer, "No, no I'm not." Our response then is to help someone suffering to cope with what they are experiencing, to make sure the help and care they need is available to them, to reassure them and pull them back from the brink, to tell them to keep going. But the bill undermines that, because its central, but unspoken, message is that sometimes our suffering means it is not worth going on.
The answer to the problem of suffering does not lie in this bill, but it does lie with this Parliament. In his second reading speech, the member for Sydney praised the palliative care system in New South Wales. He said we have one of the best in the world. I am here to say we do not, and we are here today debating this bill because we do not. Yes, we have increased funding but not as much as we should have. That is clear from the tragic stories of end‑of‑life suffering that we have heard. In the community, many supporters of the bill are not yet dying or in pain themselves, but they are afraid of what their later years may hold. They do not have confidence that they will have adequate care and relief; they should have confidence, and the buck stops here. We owe it to every member of our community to put that care in place—adequate pain relief; better access, especially in regional New South Wales; care options that are close to home and family; and the right care options for everyone, especially First Nations communities and people from diverse cultural backgrounds.
We know what we have to do because our Government has done the research. We have consulted widely since 2017 and we even published the framework, but we have failed to deliver that care, and as the former Treasurer, I take responsibility for that. Let me be clear: I failed in my former capacity as Treasurer to address this issue but as Premier I will fix it. We have made a start, but clearly there is more to do. We will have the best palliative care, not just in the nation but in the world. I want every person in New South Wales, whoever they are and wherever they are, to be afforded the care and support they need to have a dignified end of life. Everyone in our State must have the right not just to die with dignity but to live with dignity to the very end.
Let me end my contribution to this debate where I began. A strong society cherishes and protects its most fragile members. I stand against this bill because it will not help but harm. It will not bring hope but hopelessness. This debate is not about who we are today but about who we want to be tomorrow. A society is judged by how it treats its most vulnerable, the sick, the frail, the elderly, the disabled. It sees them as a blessing and not as a burden. It stands in solidarity with those who suffer and it accompanies the sick and dying on their journey, not offering death but care, comfort and compassion. We should not just look at what a handful of countries have done and simply follow. Instead, we should light a path to a better way and take the lead. Let this State be a place where we never say to anyone among us, "Your life is not worth living." Above all, let this State be a beacon of hope. A few weeks ago, we lost a great Australian—Eddie Jaku. We united in this Chamber to applaud his extraordinary life and mourn his passing. He knew pain and sorrow that none of us could imagine. In his book, Eddie wrote:
I have a belief that if you have good morale, if you can hang onto hope, your body can do miraculous things. Tomorrow will come. When you're dead, you're dead, but where there is life, there is hope. Why not give hope a chance?
Eddie was right, and I urge all members of this place, let us give hope a chance.
The SPEAKER:
Before I ask the member for Summer Hill to commence her contribution to the debate, I make clear that I have had a specific request from the member for Summer Hill to allow a photographer in the Chamber for the course of her speech. I have given permission to that; I have not given permission generally for photographs to be taken in the Chamber.
Ms JO HAYLEN (Summer Hill) (10:43:36):
I am pleased to contribute to this incredibly important debate on the Voluntary Assisted Dying Bill 2021. I acknowledge the many people from the Summer Hill electorate who have written to me about this issue. I have received emails and calls from people in support of this legislation and from those who are opposed. No matter the view, all those emails and calls have been respectful, have spoken from the heart and have been rooted in firmly held beliefs and rich lived experience. I assure everyone who has contacted me opposing the bill that I have read their emails, listened to their views and considered them intently. I understand the reasoning behind their views and I appreciate the conviction with which they hold them.
Similarly, I thank and acknowledge my colleagues both in the Labor Party and across the Parliament for the respect and rigour brought to this debate. Matters of conscience allow us to interrogate long‑held ideas and to gain a better and deeper understanding of the fundamental beliefs that bring us here. No matter which side of the debate we sit on, I have appreciated the long discussions, the spirited debate and the shared sense that we are working on something important—something that will make a real difference for people across New South Wales. This is not an easy conversation but one that is long overdue, and I thank the member for Sydney for his dedication to this issue and for bringing this bill forward. I thank the 28 colleagues who I am proud to join in co‑sponsoring this bill in the New South Wales Parliament.
My views on this issue are formed by my deeply held belief that policy must be based on evidence and that all of us have a fundamental right to make choices about our lives and about our deaths. The Voluntary Assisted Dying Bill seeks to give options to people living with terminal illness. New South Wales is the only State in the country where people are not able to exercise choice around their death in the circumstances detailed in the bill. As the member for Sydney has outlined, the bill establishes a safe and cautious framework for people in the final stages of terminal illness. This is a compassionate bill. It is a considered bill. It offers choice without compromising the safeguards the community would expect. The member for Sydney has expertly detailed how the scheme is legislated by this bill and how it would work.
I touch on a few key facts to give my community certainty about the safeguards in the bill. Eligibility for voluntary assisted dying will be strictly limited to those aged 18 and over who have been diagnosed with a terminal illness that will cause death within six months or 12 months in the case of neurodegenerative conditions. A person must be suffering in a way that cannot be tolerably managed. There are clear and firm rules to ensure a person has the capacity to make a decision around voluntary assisted dying and is not making a decision under duress. Concerns that people may feel pressured to take their own life have been raised with me by a number of constituents and by those opposed to the bill. I note that the Council on the Ageing NSW has put the record straight in a recent letter to all members of Parliament. It said:
Unfortunately, much of the discourse on these issues has been highly emotive and unconstructive, including false claims that older people will be vulnerable to unscrupulous relatives encouraging the use of VAD for financial gain.
There is simply no merit to this argument.
The proposed Bill builds on work done in other jurisdictions and contains robust safeguards to ensure that people seeking voluntary assisted dying are protected from any coercion or malpractice.
Two highly experienced doctors will independently assess applicants and determine that they are making decisions free of duress, and the bill sets out offences for placing duress on or inducing a person to apply for assisted dying. They will also work to ensure the person applying to access support is eligible and has the capacity to do so. Having the capacity to make a decision on voluntary assisted dying is defined as having the ability to understand the consequences of the decision being made, comprehending and retaining information, processing advice and being able to weigh up the decision. In addition to consulting with two medical practitioners, the applicant must sign a declaration countersigned by two independent witnesses to confirm that they wish to proceed. Witnesses must certify that the applicant appeared to sign the declaration of their own free will and without coercion.
The process of consulting with two medical practitioners is also designed to provide further time for a person to contemplate and consider their decision, as is the five‑day cooling‑off period between the first and final request. Medical practitioners involved in the process of accepting requests, referring for consulting assessments or acting as the administering practitioner must have undergone extensive mandatory training and meet strict statutory qualifications. That training specifically includes how to identify the signs of pressure or duress. Coordinating and consulting practitioners must be specialists with at least one year of specialist training or have general registration with at least 10 years' service. Administering practitioners must be a doctor with specialist registration with at least five years' general registration, or be a nurse practitioner or a registered nurse with at least five years' experience. Medical professionals can refuse to participate in this process due to conscientious objection or for any other reason. The principle that this bill is voluntary extends to doctors and health professionals. No-one is compelled to participate in this voluntary scheme.
Under the provisions of the bill the Secretary of NSW Health will determine a list of substances for the purpose of assisted dying. A person who is eligible may choose to administer the substance themselves or by a medical practitioner who meets the statutory eligibility to administer the substance, including having undertaken specific training, and must have relevant experience. There are strict safeguards and rules around the storage and transportation of substances, which must be in a stored and sturdy locked box. The substance will only be available to select health facilities that are authorised by the Secretary of NSW Health. It must be provided directly to the patient, the contact person or the agent of the patient by the authorised supplier only after the coordinating practitioner provides the prescription directly to the supplier, and any unused substance must be provided to an authorised disposer by an appointed contact person. This ensures that the substance remains strictly controlled. These are some of the safeguards to ensure that the bill offers choice to those who wish to have access to voluntary assisted dying without causing harm to any vulnerable persons.
The bill seeks to create a framework for the small number of people for whom palliative care is no longer an option. There are some who would like to pit palliative care and voluntary dying against one another, as if one cannot operate without reference to another. Both operate with the same goal: to afford people with a terminal illness compassion and dignity. Professor Ian Maddocks, who is often described as the father of palliative care in our country, has said:
If compassion and loving care towards patients and families is what palliative care is all about then assisted dying is a part of that. It is time the profession dealt with it.
Voluntary assisted dying is a further end-of-life option. It does not seek to replace or take priority over palliative care. It is unsurprising that the uptake of palliative care in jurisdictions where voluntary assisted dying is in effect is high. In Victoria 84 per cent of patients requesting voluntary assisted dying were assessed in palliative care. In Oregon the figure stands at 95 per cent. Perhaps the reason is because voluntary assisted dying requires patients to discuss end-of-life options with their doctor. They are also able to access additional information about palliative care. It is critical that we continue to grow funding for palliative care in New South Wales to meet increasing demand. The Premier has reported that the New South Wales Government spends $22 million on palliative care and support each year, with an additional $82.8 million committed over the next four years in the current State budget. I note and welcome the Premier's commitment for more money because more money for palliative care is a good thing. It is clear that the system is underfunded and requires additional support.
One issue that has been raised in the course of the debate is that patients in regional areas do not have access to palliative care. While increased funding for palliative care should absolutely seek to increase palliative care in all communities across the State, GPs and nurses currently provide end-of-life palliative care across New South Wales and specialists provide palliative care when it is required due to the complexity of a case. Medical practitioners providing palliative care in regional settings link up to services in the city via telehealth. Whether in the city or the bush, I acknowledge and thank the extraordinary work palliative care workers across New South Wales undertake. They have a difficult and sometimes heartbreaking job, but their care, diligence and empathy has eased the pain and suffering of so many.
It is simply wrong, however, to suggest that palliative care and voluntary assisted dying are at opposite ends of the spectrum. Palliative care is focused squarely on quality of life and treats stress and symptoms of terminal illness. What it cannot do is address an underlying illness. As the member for Sydney has noted, Palliative Care Australia reports that palliative care may not be able to address between 10 per cent and 20 per cent of end-of-life symptoms. It is critically important that we remember that these are not statistics, they are people. Over the past few months and years we have heard residents' stories of what can only be described as horrific and cruel deaths in cases where palliative care is no longer an option. I will put some of those stories on the public record. Kathleen from Marrickville said:
My 90 yr old mother has this year been diagnosed with metastatic melanoma. She survived surgery and is now on immunotherapy and we all hope that this be successful. We have talked about end of life issues as a whole family She is not afraid of dying but she is extremely concerned about how she might die, whether from this or some other illness. She wants the option of voluntary assisted dying as do I for her if this was the only way to relieve her suffering. I am a social worker with over 30 years experience and have worked in palliative care since 2012. I have enormous respect for the effectiveness of palliative management with terminally ill patients, both for the patient and their families and friends. In my experience it is relatively uncommon for patients to express that they would wish for an assisted death due to unrelievable suffering. But when I do see that degree of suffering and be unable to offer no hope of easing it is absolutely heartbreaking for all concerned. Research tells us having the option of voluntary assisted dying brings peace of mind to those facing death. We also know the take up rate of this option is very low. Us workers in palliative care (and especially social workers) are acutely aware of the need to protect the rights of vulnerable people and to ensure they are making decisions free of pressure or influence. We welcome the work that has gone into this bill to ensure individual rights are maintained.
Natasha from Ashfield wrote to me to say:
Two weeks ago my mother passed away from a terminal brain tumour. Prior to my mother's rapid deterioration, she had expressed her fears and concerns that she would experience unnecessary pain and suffering as her terminal condition declined. As my mother's condition rapidly declined, she lost her ability to move, swallow and speak. She was put onto a continuous morphine pump, however as with many people on morphine, she developed tolerance and the morphine dosage provided limited pain relief. My mother's last 5 days involved extreme suffering, the morphine dosage was not high enough to completely relieve pain, and as she was unable to communicate her suffering, we had to urge doctors to increase her morphine to attempt to alleviate her pain. We did our best to manage my mother's pain, through breakthrough morphine administration, however she still continued to experience extreme pain. My mother's suffering was both traumatic for my family, but also for my beautiful mother who did not deserve to spend the last few days on this earth in such extreme pain. Everyday, my family and I watched my mother suffer unnecessarily because she did not have the choice to have assisted dying. The memory of my mother's last days alive will always ignite feelings of anger, desperation, and trauma that my mother could not pass away in peace. I strongly believe that no other terminally ill people or their families should experience what we endured, it is inhumane.
Emma from Lewisham wrote to me to say:
A few decades ago, my aunty Barbara had a terminal illness. She got to the point where she was as thin as a rail, couldn't keep down any food, and was essentially slowly starving to death. She was in so much pain. She decided to book into a motel room and take her own life. She was forced to do this to escape her extreme suffering, and she was forced to do this in secrecy. I feel so sorry for the poor person who must have found her body, who will carry the memory of this moment with them forever. This all could have been avoided, and she could have died with her family by her side. She could have died safely ("safely" may seem a counter-intuitive way of phrasing it, but suicide attempts are very dangerous, as one can instead incur permanent neurological and physical damage and disability, if one survives their attempt). She could have died with dignity.
Barbara's family notes that she was a talented artist and jewel maker, and she will be dearly missed. I am grateful to each of those women for writing to me and giving me permission to share their stories with the Parliament today. They are just three of many. As I noted earlier, the momentum for this reform is undeniable; it is propelled by a wave of popular will and evidence. New South Wales is the only State not to have legislated the reform. In other States where voluntary assisted dying is law, the sky has not fallen in. In fact, in Victoria between 19 June 2019 and 31 December 2020, 697 people were assessed as eligible at first assessment; 583 were assessed as eligible at consulting assessment; 486 permits were issued; and 276 people were administered medication.
Polls consistently show that 80 per cent of New South Wales residents support reform. The Council on the Ageing [COTA] notes that research conducted earlier this year as part of the COTA Federation State of the (Older) Nation report found that 72 per cent of people aged 50 and over in New South Wales support the legislation. The research also shows that more than half of older people in New South Wales consider voluntary assisted dying for themselves. Voluntary assisted dying is supported by the Older Persons Advocacy Network, COTA NSW, the Older Women's Network, the Health Services Union [HSU], the NSW Nurses and Midwives' Association, the Australian Paramedics Association and the Police Association.
It is commonsense reform with strong, broad-based support across the community. It is a considered, cautious and balanced bill. I acknowledge the important work of Go Gentle, Dying with Dignity and all those advocates who have brought personal experience, professional expertise and passion to the issue. For many, advocating on this issue can bring up trauma, pain and profound sadness. Please know that every email, every letter and every retelling of a story makes a difference. Those stories do not fall on deaf ears and are part of the change that is long overdue in New South Wales.
I strongly believe that in dying each of us should be afforded the same dignity, respect and compassion with which we live. Legislating voluntary assisted dying is about providing end-of-life options and agency for people who are suffering, often unspeakably. I can only speak for myself when I say that this is a choice I would like available to me if I were terminally ill. When it is my time to go and if I am suffering and unable to benefit from further care, I want to say goodbye on my own terms, surrounded by my family, with the same respect and dignity that I try to live my life. Frankly, those who do not wish to take up the option for voluntary assisted dying need not do it.
The bill treads a challenging path deftly, and with the level of consideration and care our community expects on an issue this important. Its principles are sound, offering choice to those dying, whilst protecting the rights and beliefs of those who oppose it. Its safeguards are robust, ensuring that agency is afforded to vulnerable people in death, whilst remaining resolute against abuse and coercion. It acknowledges the difficult complexities at end of life and remains simple enough for those who will benefit from it to understand and access it. I am proud to co-sponsor the bill, and commend it to the House.
Mr ALISTER HENSKENS (Ku-ring-gaiMinister for Families, Communities and Disability Services) (11:03:16):
— Today we debate the highly emotional topic of the circumstances, if any, when people in the future should be able to lawfully terminate their life with the authority of New South Wales. Like many members of the House, I supported and voted in favour of legalising abortion, but today I raise serious concerns about the proposed piece of legislation—the Voluntary Assisted Dying Bill 2021. Today we are engaged in a debate about competing views on how to best manage the pain of terminally ill patients. If a majority of the House is in favour of euthanasia instead of palliative care, we must, in my opinion, come to grips with an important challenge: How can we protect the vulnerable patients covered by the legislation?
Despite the labels that will be put by commentators on each side of the debate, many speakers, like me, will not bring a religious objection to the bill. For the purpose of speaking on the bill today, I randomly consulted, individually, a large number of local medical specialists and doctors who were not associated with either side of the debate. Those included a medical oncologist, a clinical haematologist, two palliative care specialists, a neurological specialist, two psychiatrists, a pain specialist, a joint palliative care and pain management physician treating cancer patients and a general practitioner with a large cohort of elderly patients. With the assistance of the Australian Embassy in the Netherlands, I spoke with a former senator and architect of that country's euthanasia legislation introduced in 2001, a doctor who performs the termination of patients in that country as well as doctors and representatives in New South Wales associated with the voluntary assisted dying group.
I have listened to my constituents and I have met constituents for and against the legislation. I have heard their sometimes very emotional stories about the loss of a loved one, and I have read the emails sent to my office. The communicated views of people in my electorate is evenly divided between those who support and oppose the bill. My reservations about the bill are entirely pragmatic and are based on the expert medical advice that I received in my 27 years of legal experience as a practising barrister and solicitor, prior to entering the Parliament. The bill is the first piece of legislation since the abolition of capital punishment that will allow a person to intentionally end the life of another human being without any legal punishment or sanction. Any legislation that results in the lawful ending of a person's life must be well-drafted and carefully scrutinised because any weakness in the legislation can result in new and unintended consequences.
I begin with a consideration of the coordinating and consulting medical practitioners under the legislation. The coordinating and consulting medical practitioners do not have to be the treating doctors of a patient. They do not need to know the patient. They do not even need to speak to the patient's treating doctors, and they do not need any special knowledge whatsoever of the disease that the patient is suffering. An immediate cause for concern is that the second consulting doctor is appointed by the first consulting doctor. Every pretence to an independent review is destroyed by the manner of the second doctor's appointment under the legislation. Unlike in Victoria, neither of the two doctors needs to be a specialist in a relevant area. The doctors under the bill may choose to consult a third doctor who is a specialist in a particular area. However, strangely, there is no obligation for the coordinating and consulting practitioners to follow the specialist advice.
In discussions with a broad range of medical practitioners, the advice I received is that in almost all cases, excluding perhaps motor neurone disease, it is impossible to accurately predict a terminal patient's likely date of death until about two or three weeks from the patient's actual death, when the patient starts to exhibit certain changes physically, emotionally and physiologically that point to an impending death. The central plank of the bill, the idea that a person can be accurately assessed to have six or 12 months to live, is a medical fallacy in almost all cases.
People with serious terminal medical conditions by definition are vulnerable. When a vulnerable person is tricked, coerced or misled into signing a contract, there are various legal mechanisms to overturn or change the contract. However, as with capital punishment, euthanasia is not like signing a contract. Errors with euthanasia process are irreversible, so the process has to be robust. The Ageing and Disability Commission Annual Report 2020-2021 revealed that of the more than 4,000 allegations of elder abuse across the State, 68.3 per cent were for financial or psychological abuse, mainly to prevent or restrict access to families and prevent or restrict access to support and services.
Since becoming an MP, I have spoken to people working with seniors in my electorate who have told me about elderly people eating cat or dog food while living in their own home because of coercive family control over their finances or an abuse of family financial support. It may be uncomfortable to confront, but, taking into account credible accounts of elder abuse in our community, this bill could motivate greedy relatives to put pressure on family members to end their life earlier than the patient wants. According to the Royal Commission into Aged Care Quality and Safety, in 2019-20 alone there were 5,718 reported allegations of assault in aged-care settings across Australia. KPMG estimated up to 39,000 other such instances were unreported. As a society, we do not always treat our senior citizens well. Proposed section 16 (1) (g) purports to exclude from eligibility any persons acting "because of pressure or duress". But these forces are often imperceptible to the point of being impossible to identify.
As a consequence, the patient may be legally assisted to die by the coordinating and consulting medical practitioners without the rigorous assessment of any third party. Many of the people with terminal illnesses whom this legislation concerns can have assets that are valuable. This gives a motivation for people to encourage them to end their lives against their will. One of the great challenges of legislation like this is how can vulnerable people be protected from the manipulation or the greed of those around them or implied pressure or an expectation that they should go early to provide money to their family through an inheritance. It is very important to understand that there is no obligation under this bill on anybody to consult with close family members about their patient's decision-making capacity, whether they are under duress or acting voluntarily, before the doctor's decision to allow a person to be killed.
That means the first time that you may find out that your mother, for example, has considering dying under this proposed law is when you get the phone call to tell you that she is dead. Close family members should know in advance that there is a proposal to lawfully kill their loved ones and be given the opportunity to assess the voluntary nature of the decision and the reasons behind it. My wonderful 90-year-old mother was recently hospitalised. She still lives independently, with the support of my sisters and brothers. She was recently taken to the hospital with an apparently serious medical condition and, because of COVID-19 restrictions, no family member could attend the hospital to be her advocate with the doctors and to understand the medical advice that was being given to her. It was quite clear that the doctors who were treating my mother had no idea of my mother's cognitive abilities.
My mother was understandably, given her age, only able to pass on to our family limited details of the medical advice she was receiving directly from the doctors. This is a good example of the limitations of unfamiliar doctors making assessments about an unfamiliar patient. No real harm was done in my mother's case because it occurred in a context where all of my family were trying to keep my mother alive and well, and to ensure she was receiving the best medical treatment possible. But imagine this same situation in circumstances where there was a manipulative family member controlling the flow of information who was keen on an early inheritance. Greater scrutiny is required for those kinds of decisions that can give rise to family disagreement. Under this bill, none of the family needs to be informed or involved.
Extension of time]
The bill has completely inadequate processes to protect vulnerable, terminally ill patients from being exploited or coerced in order to receive an inheritance or for other reasons. It goes against all life experience that clause 6 (2) of the bill presumes, as it does, that all terminally ill patients have the capacity to understand all the information and advice given to them about assisted dying, and it presumes that the patient has decision-making capacity. [
It is very easy to understand that a patient may be bamboozled under this legislation when the whole process can occur as quickly as within five days. In certain circumstances, the process can even be fewer than five days under proposed section 49. This is particularly of concern when people who are given a diagnosis of a terminal medical condition go through five stages of grief and will be more likely to want to die after the initial diagnosis than later on. Yesterday a Victorian specialist told me of how one of his patients was coerced to end their life by a child who lived overseas and wanted the death of their parent to coincide with the child's visit to Australia. This caused incredible grief for the spouse of the patient, who felt that valuable and painless months with their partner had been taken away. If this can happen under the similar Victorian legislation, then it will happen under this legislation.
As I have said already, a legal criterion for eligibility under the bill is that a person must be diagnosed with at least one illness that will, on the balance of probabilities, cause death within six months or 12 months for a neurodegenerative condition. It is very difficult to support a law, which at its heart, is based on a criterion that is only a guess by doctors without any scientific basis as to the length of a patient's life. Opinions based on guesswork are incredibly dangerous, especially when the consequence is that a person will die and may be robbed of time with their loved ones. Under the Dutch model, every euthanasia death is investigated by an assessment committee, which is constituted by a lawyer, a doctor and an ethicist. Oversight is critical to compliance with process, and more and better oversight is needed within this bill.
In his second reading speech, the member for Sydney argued that legislation of this kind is beneficial for and will reduce suicide rates because people are currently suiciding who could have used the processes under this bill. But the evidence actually shows the opposite. Suicide rates go up in jurisdictions after legalising euthanasia, not down. People may suicide as a consequence of psychological pain. The legalising of death under this bill for people because of subjective psychological pain is unwelcome. Former Prime Minister Paul Keating alluded to this by saying that with euthanasia a line is crossed that should not be crossed.
Medical journal articles reviewing relevant jurisdictions have found that when societies legalise euthanasia, rates of non-euthanasia suicides go up, not down. That is what has happened in the United States, the Netherlands and Canada, and the early data from Victoria is consistent with an increase. The normalisation of ending a life because of pain through euthanasia will undo some of the good work we have been doing to deal with mental ill-health in our community. It is a major concern that legalising euthanasia will lead to an increase in non-euthanasia suicide.
The member for Sydney in his speech cited a Palliative Care Australia estimate, which he said suggested that 4 per cent of patients are beyond the help of palliative care. Those figures are based upon a single university study. The report actually states that only between 0.5 per cent and 2 per cent of palliative care patients report severe distress after starting palliative care but just before death. A medical oncologist in my electorate, who treats over 2,000 cancer patients a year together with other specialists, have told me that nobody needs to be in pain if they receive proper palliative care, including, in some cases, treatment for psychological pain. They have told me that there have been enormous advances in palliative medicine in the past 20 years.
In conclusion, if it is the will of this Parliament to pass this legislation, it should do so with amendments to deal with the issues that I have raised. This legislation has a central role for doctors, but many members of the medical profession do not want this law. If this bill is passed, there will almost certainly be an increase in the number of suicides in our community. This legislation will lead to a slippery slope of normalising euthanasia—like in the Netherlands, where 20 years after the introduction of euthanasia, one in 25 of all deaths for any reason is by euthanasia. I find it hard to accept that in each and every case assisted dying will be truly voluntary when I have spent over 25 years appearing in legal cases where people have complained about being misled, deceived or coerced into doing something they have regretted. The supporters of this legislation put the word "voluntary" to their name but they cannot guarantee that dying will be voluntarily in every case. I fear we are about to commence a history in our State of coerced or involuntary dying. If that happens in just one case, it is one case too many.
Mr RYAN PARK (Keira) (11:20:02):
I wholeheartedly support the Voluntary Assisted Dying Bill 2021. In doing so I will make some comments about the challenging nature of the issue before the House today, as other members have noted in their contributions to this debate. I know that people on both sides of this debate have strong feelings about their viewpoint. I have taken the time to read and engage with people from a variety of perspectives on this challenging issue. I respect that there are differences of opinion on this issue, even within my own political party. However, I hope that this debate will be conducted in a respectful way. The people of New South Wales will be looking to this Chamber over the next few weeks, hoping that no matter what side of the debate members are on they approach it with compassion which will lead to greater respect as they focus on the issues before us.
Many people in my community will not agree with my position. They may be members of my own political party, my neighbours, my family members or my friends. Some may even be disappointed that I will be voting in favour of this legislation. I understand and respect that. Members of Parliament approach conscience votes like this in a variety of ways. Some seek their community's input to help them shape a view. Others prefer to be guided by experts to come to a conclusion. Others still prefer only to vote rather than engage in the debate. All of these ways are completely acceptable. My approach is simple: I take the view that the community has elected me to this place to make decisions, even when they are challenging, and to be upfront with why and how I have made a decision. This is the approach I have again taken with this bill.
I am of the strong belief that this legislation is long overdue. It is a belief I have held for a long time. What I want to see is that a person with a terminal illness who is experiencing pain and distress has the right to request assistance from a medical practitioner to end their life with dignity. Voluntary assisted dying is a major legal, ethical and social policy issue that we must face. Laws such as this have been passed in five of Australia's six States. Voluntary assisted dying laws have commenced operation in Victoria and Western Australia. Such laws will commence in Tasmania on 23 October 2022, South Australia in early 2023 and Queensland on 1 January 2023. New South Wales is the last State to introduce these laws. I am disappointed about that. I believe we are the premier State and I would have liked us to lead on this issue.
Over the past few years I have taken the time to review extensive material on this matter. I have listened to, engaged with and actively sought out family members and experts from across my electorate and others who have experienced watching a loved one die from a terminal illness with no options available to them. By ensuring we have the correct safeguards in place and that a person's individual situation is carefully assessed, we can proceed down a path that enables someone to seek assistance to end ongoing pain and suffering. Like many others, I have watched someone who I was very close to have to endure years of pain, discomfort and suffering in the last stage of their life. It is one of the most distressing times that those close to them will go through. For me, the lady was my nanna. The way that we have to watch someone go from being lively, energetic and full of life to withering away before our eyes in the most extreme discomfort is nothing short of cruel. To see the degradation of someone you love is something you never recover from.
I know there are many vocal opponents of this legislation. They argue that the laws are going to encourage families to wrongfully intervene to end someone's life. They have raised their concerns about vulnerable people being taken advantage of. I hear those concerns, and as part of reviewing this bill I have sought my own assurances that this legislation will not do that. I feel that sufficient safeguards are in place within this legislation to protect things such as this from happening. There are safeguards against undue coercion. Under this legislation, only adults diagnosed with a terminal illness that will cause death within six months, or 12 months for a neurodegenerative condition, and who as a result of a condition are experiencing suffering that cannot be tolerably relieved will have access to voluntary assisted dying. That is not an easy process.
In addition, there are strict provisions to ensure the person has the capacity to make and understand the consequences of a voluntary assisted dying decision, and that they are acting voluntarily and without pressure or duress. Two experienced doctors will need to independently assess a person seeking assistance and independently come to the conclusion that they are acting voluntarily and without any form of pressure and duress. All doctors will be trained in recognising the signs of pressure or duress. If they are unsure, they must refer a patient to someone who has the skills and training to make a determination, such as a psychiatrist, psychologist or social worker.
I am pleased that part 7 of the bill puts in place a number of new offences for pressuring someone into making an application for assisted dying, with strong penalties, including seven years' imprisonment, for inducing another person to request access to voluntary assisted dying. It deals with offences relating to inducing self‑administration of the prescribed substance, offences relating to false or misleading information and offences relating to the schedule 4 or schedule 8 poison as a voluntary assisted dying substance. It deals with offences relating to ensuring that people are fully aware of all of their options to go through with it—but also to not go through with it at any time within that process. These are offences that I believe are an important part of the robustness of this bill. I acknowledge the member for Sydney, who has led the process for many years to bring forward the bill that is before us today. It is a robust bill, including the offences laid out in part 7. On top of that, there is also provision within the bill to make an appeal to the Supreme Court if there is concern that someone is not acting voluntarily or that pressure or duress is playing a role.
I understand that this is a decision that should not be taken lightly. That is why I am pleased the legislation is designed in a way to give people control over the timing of their death at a time when their death is imminent and they feel they have suffered enough. The eligibility criteria include a need for the person's request to be enduring, which will be assessed by two independent medical practitioners. The process itself is designed to give the person time to think about their decision. The person must repeat their request on three separate occasions, including in a written declaration signed by two witnesses independent of the voluntary assisted dying doctors, and there is a mandatory five-day cooling off period between the first and final requests.
People whose views differ from mine have said that the safeguards in the bill show that as legislators we should be concerned about its passage. I could not disagree more with this view. My community has elected me to this place to make difficult decisions and to debate challenging legislation that aims to improve the society in which we live. That is my job. It is our job as legislators. We do not get to pass the buck on difficult and challenging legislation, the same way that people in our community do not get to pass the buck on issues that are challenging within their occupation.
Extension of time
There are safeguards in much of our legislation. One only need look at the counterterrorism legislation or the Crimes Act, or legislation relating to how the high-powered agencies like the Crime Commission are able to operate. All of this legislation has checks, balances and safeguards, because legislators who have gone before us have been smart and wise enough to put them in place, just like this Parliament has put safeguards in the legislation that we have debated. There was an issue around the Asia-Pacific Economic Cooperation [APEC] forum. The legislation around APEC was some of the most challenging that a Parliament has ever confronted. []
Having checks and balances in the legislation we debate is something that those who came before us introduced and we will continue to do it. For some people, this debate is about seeing voluntary assisted dying as a substitute for quality palliative care. I do not take that view at all. Quality palliative care is a right that everyone in this country should have, but palliative care and voluntary assisted dying are two very distinct processes. Many people access palliative care before they seek voluntary assisted dying, aiming to maximise their quality of life and reduce their pain and suffering. Voluntary assisted dying needs to be available in New South Wales when palliative care and treatment can no longer relieve suffering in a way that is tolerable to the person. Many in this debate will refer to the need to be considerate of vulnerable people at that time. I accept and understand that palliative care in New South Wales must be improved.
I sincerely acknowledge the Premier's remarks today. But I say this to him: The burden of pain and the degree of discomfort that all of us are going through when we are reviewing this bill should not be put on one particular government or Premier. I believe palliative care is an issue that all members have not addressed for a long time. It is an issue that I have not focused on. One thing I commend the member for Sydney for in bringing this bill to the Parliament is that it has put a sharp focus on palliative care across New South Wales and the way that all members, particularly someone like me in the shadow Health portfolio, need to work with the government of the day. I would like to do so in a bipartisan way to make sure that New South Wales has a first-class and world‑class palliative care system.
I acknowledge the people who have been tireless advocates for this legislation for many years. Each of them has been through the trauma of watching relatives die in pain or is facing their own traumatic death. I say this to them: I see you, I have listened to you and I stand with you. I strongly believe in a human's right to make decisions about their own life, free from the interference or judgement of those not in their shoes. Not one person will die because of this legislation. That person's fate has already been determined by an illness that cannot be cured. This is about a person having some control over how long they will suffer. Andrew Denton was right when he said, "Why should we prolong suffering simply because we are holding out some form of hope for that person?" That disease has taken hope away from that individual.
This legislation brought forward by the member for Sydney will not change that, but I hope it will lead to more people being able to die with some form of dignity. I finish with a quote from Lidia in my electorate. I will read part of it but I have read it all multiple times during preparation for this debate. Lidia says:
I am a 60-year-old female and I have two children in their twenties that are living with me. Before I was diagnosed with motor neurone disease, I supported assisted dying because I think we have the right to die with dignity if we choose it. Now, it particularly affects me as I will be paralysed and unable to move or hardly breathe, knowing that there is no way back. If I knew that when I am in a very advanced state of my illness, if I could ask to help me go peacefully, I will not be as scared as I am because I will have some control of my fate.
That is a powerful message. It is a powerful story and one that we all should focus on during this debate. This is a challenging issue but, as legislators, we are in this place to make challenging decisions. I hope the debate is conducted respectfully. I hope people understand the reason I have come to this conclusion. I hope the bill is passed so that people in New South Wales who are suffering terminal illness can truly die with dignity.
The SPEAKER:
Before calling the member for Tweed, I note that this debate is being conducted with a high degree of respect. I thank the House.
Mr GEOFF PROVEST (Tweed) (11:35:22):
I speak in debate on the Voluntary Assisted Dying Bill 2021. We have heard, and will hear, from a lot of members about the bill. In my time in this place there has been a number of free votes, and the process creates a great deal of concern and angst and at times worries me. All members come to this place with opinions about life. Some have strong opinions about religion, football or the weather. I often sit back and wonder whether that is why we stood to be elected as members of Parliament. All members were elected to this place to represent the majority of their communities. For nearly 15 years now, I have listened to various debates. Sometimes I find that my colleagues on both sides of the House have difficulty separating their personal view from that of their wider community. I think that is a shame. Members need to sit back and say, "Why am I here?" I am here because I put forward various policies and I got the majority of people in my electorate to vote for me. I use that as a template for what we are about to do here.
I will be up-front: I will be voting in favour of the bill, following careful consideration. I believe it has all the key safeguards that are obviously needed for this type of legislation. It will see New South Wales follow every State in the country in legalising voluntary assisted dying for people with incurable medical conditions who have only a short time to live. In the end, it is all about giving people choice. Some people have said it is all about dignity, but I am not sure there can be dignity in death. It was Martin Luther King who said:
Every man must do two things alone; he must do his own believing and his own dying.
The residents in my electorate have more experience with this issue than most others in the State, being, on average, older and wiser. Dying comes up in conversation, and so does euthanasia. Some people who support the idea say they do not really care whether it is legal. They tell me, with a nod and a wink, "It happens all the time, Geoffrey." Others say they do not want the last thing they do on this earth to be a crime. They certainly do not want their loved ones, who may have helped them with their choice, fall foul of the law. That is why, on balance, this bill is the right thing to do.
Hansard
I am more interested in what happens in the lead-up. We have fantastic palliative care organisations in Tweed, and this is the perfect opportunity to place in the Tweed's appreciation for their wonderful work. Tweed Palliative Support has a magnificent Wedgetail Retreat community hospice nestled in the Tweed subtropical rainforest. Its proud patron is the widow of Nationals legend, Doug Anthony, and, legend in her own right, Margot Anthony, AM. I have been privileged to have an association with Tweed Palliative Support [TPS] throughout my 14 years representing the Tweed in this place.
Tweed Palliative Support Inc. is a multi‑award‑winning charity that was founded in 1998. It is a well‑established community‑run organisation that provides free and donation‑based support services for people living with life‑limiting illnesses. The hospice‑at‑home service is designed to keep people in their homes for as long as possible by providing help with shopping, personal care, transport to medical appointments, as well as respite for their primary carer. If it is not feasible to remain at home, people are offered the opportunity to come to Wedgetail Retreat. They also loan medical equipment such as beds, wheelchairs, et cetera. Each year the hospice trains up to 20 volunteers, who then take on various roles within the charity: home respite, transport, office work, fundraising, et cetera.
Wedgetail Retreat community began with a dream and now offers 24/7 specialised palliative care in our region. Clients with life‑limiting illnesses and their families are welcomed into a modern home environment with friendly registered nurses and trained volunteer palliative carers. Meredith Dennis, OAM, is the president. Meredith has been an inspiring palliative care innovator for nearly two decades, as well as a volunteer. As president and volunteer coordinator, Meredith is involved in all aspects of running the organisation. Meredith understands firsthand what it is like to have a significant family member moving towards the end of their life. Her father was one of the first people to spend his last days in beautiful surroundings.
I wish to quickly refer to Queensland. On 23 September 2021, the Queensland Voluntary Assisted Dying Act received assent, which brings Queensland into line and provides many safeguards. One of the interesting features of the legislation is eligibility. As all members of this House know, New South Wales shares a border with Queensland which has been highlighted recently with border closures, et cetera. Section 12 (2) (a) of the Act states that "a person who is a long term resident of a place close to the Queensland border and who works in Queensland and received medical treatment in Queensland" can be granted exemptions to satisfy their concern. The Act becomes effective in January 2023. One of the main requirements is that a person must live in Queensland for 12 months before accessing the provisions of the Act. In some ways my residents may qualify to receive voluntary assisted dying in Queensland.
I have had personal experience and only wish that this legislation was available when my father was ill. After my father had been suffering for some time, in 1999 I watched him endure a very slow and painful death. My father was a teacher and a principal. He was a hardworking and extremely intelligent man—a man who was robbed of everything that was important to him; his mind. He had no quality of life and he did not want to be here. I watched as my father, who was a powerful man in his own right, came in and out of consciousness, soiled himself in bed, and with catheters inserted. It was dreadful. There was no quality of life. He spent the last 10 months of his life in the Wauchope hospital. That had a dire consequence for my mother. I could see that her health was rapidly deteriorating because of having made daily trips to the hospital. When my father was out of consciousness could become abusive.
As I had enduring power of attorney, I had to make a decision. I have gone through this experience twice, the most recent being three years ago in relation to my mother, who was 94. When the surgeons and the doctors—experts who are far more qualified than I—came to me and said, "There is nothing more we can do—absolutely nothing. All we can do is try to assist with their pain", referring to each of my parents. Having the right to make the decision, I said, in relation to my mother and my father, "I really don't want them to suffer anymore." At that stage my mother was conscious sometimes and she would say to me, "I don't want to be here, son. I am suffering so much pain. I just don't want to be here." I authorised the doctors to alleviate that pain. At that point the doctors advised me that if they gave to each of my parents more and more morphine, their organs would eventually shut down. My father died within two days and my mother died within a day and a half. I will always remember that my mother actually thanked me. She said, "Thank you." I said, "It's all right to go, Mum. It's all right to go."
That is why I have a great deal of feeling about this legislation. I congratulate the member for Sydney, who has never been one to go backwards: He is always going forwards. I think this is really important legislation. I am sure this legislation will be passed. I encourage everyone to do so. I respect views, both for and against the legislation, but at the end of the day I think we have an onus on us to represent the people of New South Wales in this place and do the best we can to make our community strong. Having said that, I commend the bill to the House.
Mr GREG PIPER (Lake Macquarie) (11:45:50):
I acknowledge the member for Tweed and thank him for his heartfelt contribution to this debate. I come to this debate in support of, and as a co‑sponsor of, the Voluntary Assisted Dying Bill 2021. I thank the Premier, Dominic Perrottet, and the Leader of the Opposition, Chris Minns, for facilitating this debate. I have been involved in this very important matter for a long time now, though I know my involvement pales by comparison with many in the community who have experienced the grief and additional anguish of seeing a loved one die a painful and ignominious death: a death without dignity.
Some things change and some things do not. Community support for reform has certainly changed and has continued to grow considerably over recent decades. In recent years, all other Australian States passed similar legislation, leaving this State sadly lacking. Yet there are many things which have not changed. People are still dying horrifically painful deaths, which could be managed in a far more humane or gentle way. People are still taking their own lives in the most awful of ways because of intolerable pain and suffering from their terminal illness, which simply cannot be alleviated by even the best of palliative care services. We still have the same opponents of voluntary assisted dying wheeling out the same old myths and lies. Predictably, we still have religious and faith‑based hierarchies opposing this important reform, showing they are demonstrably out of touch with the majority of their congregation.
Sadly, we still have members of this House who ignore the wishes of their own communities and who will seek to obstruct debate and ignore the cruel and horrific circumstances that some people with a terminal illness endure. I believe that the people of New South Wales are tired of it. They are tired of politicians ignoring their views on this issue and they are sick and tired of being denied their human right to choose a dignified death in circumstances where palliative care cannot deliver on that promise. That is why a vote on this bill needs to happen this year.
Before I go into the details of the bill, I would like to say this: Members have had a draft copy of this bill for four months. An intention to table it was flagged almost a year ago by the member for Sydney. Debate on this issue has dragged on for decades. Our constituents have been raising this with members for years. This is not a rushed debate in any sense whatsoever; indeed, it is one of the most consulted issues and bills that the New South Wales Parliament has dealt with. Yet we have opposition in this place from members who have the temerity to make the claim that this is being rushed, and they do so with no sense of irony or shame! It is time that we confronted the issue and dealt with it in the way the people of this State expect us to deal with it—and in the way people like Judith Daley need us to. Judith sat out the back of this place again recently, some 20 years after she was first diagnosed with chronic lung disease and later lung cancer, which so far has been treated with 30 rounds of chemotherapy. She is now 77 and certainly does not want to die. She does not want to choose to die now. In her words, "At the end of my life I'm going to suffocate. I'm going to be drowning because my lungs simply won't be working any more. I'm the only one who'll know when the pain truly becomes intolerable. That's why I have to have the choice, the choice to go voluntarily when I need to."
We all know there are those who will seek to delay the bill. They will attempt to filibuster and amend it into a useless and impotent measure, like it is a political game. I ask those members to show compassion and respect for those who are truly suffering. Unless you can look people like Judith Daley in the eye and feel comfortable about what you are doing to delay this debate or deny them a choice and a dignified death, then do not make their end of life any crueller than it already is. We have a bill that I believe is the most robust and safest of any we have seen in Australia. It truly has been designed to protect all interests, including those who would object to any involvement at all. But mostly, it has been crafted with respect and sensitivity to the circumstance of those who face a painful and undignified death that cannot be mitigated by palliative care.
It provides a framework for a process that is entirely voluntary at every stage and can only be accessed by someone of sound mind. It includes safeguards that ensure that a person is acting voluntarily and not under pressure or duress from another person. For those who are concerned about coercion, it includes penalties that include life imprisonment for the unauthorised administration of the substance and up to seven years in prison for someone who induces another to apply for voluntary assisted dying. The bill includes protections for doctors, health workers and others who have a conscientious or religious objection to voluntary assisted dying. These protections are extended to faith-based entities such as a nursing home with religious affiliations. The bill provides that that can only be accessed by a terminally ill person who has gone through a rigorous assessment process by experienced medical professionals and a board led by senior judicial officers, and appeals before the Supreme Court.
Extension of time
Something else that seems to be forgotten by the opponents of this reform is that voluntary assisted dying is not mandatory. It is not compulsory: It is voluntary. It is a personal choice or an option for those who truly need it. Those with a conscientious objection due to faith or other reason simply do not have to participate in any way and I support them in that choice. Supporters of voluntary assisted dying do not want to force opponents to use it, they just want those opponents to reciprocate by not denying them the right to manage their end of life under such circumstances. Having mentioned faith, I believe the idea that people of a religious faith are broadly opposed to that is an absolute myth. In 2019 Vote Compass carried out the most extensive survey ever undertaken on this issue in Australia for the ABC. It surveyed the views of more than 450,000 people, and while it showed that support for voluntary assisted dying was 87 per cent with a further 6 per cent neutral in the broader community, 77 per cent of Catholics actually supported it and only 13 per cent opposed it; 76 per cent of Protestants supported it, while 71 per cent of other faiths supported voluntary assisted dying, with an additional 10 per cent neutral. []
Whether you support voluntary assisted dying or not, the undeniable truth is that many people who are intent on avoiding their suffering or having their loved ones watch their suffering, will take matters into their own hands. In 2019, 20 per cent of all suicides among people aged over 40 in this State were by people diagnosed with a terminal illness. They take things into their own hands. They stop eating and drinking; and you will hear that from paramedics who are called out to assist those who find far more horrific ways of ending their life. Another reality check for those who say that pumping more money into palliative care is all that is needed: It is not. Yes, let us have more investment in palliative care; we welcome that, we welcome the Premier's commitment. But there will always be some who will not benefit from that palliative care. There is a big lie around the end of life for so many as well and that big lie is the wilful ignorance to the fact that end of life is very often accelerated within palliative care with a nod and a wink. At some stage hydration is withdrawn, food is withdrawn and analgesia, usually morphine is increased to manage the pain and sedate the person. It is a conscious decision to hasten death, but not the conscious decision of the person dying. It is not when they choose. It is not on their terms.
How on earth can that be okay, when it takes away that person's opportunity to end their own life with dignity when the pain becomes intolerable, and deny them the opportunity to say a proper goodbye to their loved ones in their very final moments? Palliative care is excellent in most instances, but it is not magic—it is just not magic—and it cannot manage the pain for everyone. It is simply not magic, and we have to stop pretending otherwise. Some people die in horrific, unbearable and prolonged pain. That is what the bill is about: It is about providing compassion to those who cannot be helped by palliative care. Palliative care does not always provide the lovely, peaceful ending that some seem to think. For many it is the appropriate and compassionate way, but for some it is not. There are many of us who have held the hand and stroked the brow of a loved one in their final moments. I have no doubt that everyone has had their own experiences that they draw on in this debate. Some of them differ considerably and some have had more than others. My views and resolve on this have been developed from my life experience, which I think might have seen more death than some in this debate, though definitely less than others. I look to you Madam Deputy Speaker. It is personal and I would not want to dismiss anyone's experience and how it affected them.
For me, a big part of what informed my views was my time working as a psychiatric nurse at Morisset Hospital. I knew many people who passed during that time—not that any of those people would or should qualify for voluntary assisted dying, do not get me wrong—but the experience did have that effect on me: I started to consider this issue. Being at the bedside of my brother Colin when he died of brain cancer at age 31—he actually had cancer everywhere—my father, Keith, many years later, my mother, Hazel, four years after that and my dear friend Vicki who died with horrible pain but amazing personal strength and dignity. Vicki was helped wonderfully with home-based palliative care, but even to the end she managed her own death. Vicki, I know, would very much have supported access to assisted dying and would not have appreciated even well-intended paternalism denying her that choice.
I acknowledge and thank the many thousands in my community who have contacted me on this issue and urged me to support this reform. I also acknowledge and thank my colleague the member for Sydney, Alex Greenwich, for the bill, his staff who have worked and consulted tirelessly to produce it and the other co-sponsors of the bill. I also acknowledge everyone else who has worked hard for many years towards this much‑needed reform, both inside this place and out, in particular the likes of Penny Hackett and Shayne Higson at Dying With Dignity New South Wales, and Andrew Denton of Go Gentle Australia. It is time we acted like the mature and educated society we are and realise that palliative care, as good as it can be, does not deliver a Disney fairytale ending for anyone. It certainly does not provide a pain-free and dignified passing for everyone. It is time we did something for the many good people who have very bad deaths unnecessarily. It is time for us to listen to the significant majority of people who put us here.
There may be beliefs other than faith-based ones that lead people to oppose voluntary assisted dying, but they are relatively rare. Opposition is clearly overwhelmingly informed—I should say inspired, not informed—by religious beliefs and yet the scriptures are silent on the matter. If we want to rely on articles of religious faith, particularly Christian faith, then I think a guiding principle should be that God gave people free will, so that they could make their own choices. I interpret that to mean that as long as you are doing no harm to others, you should be allowed to make that ultimate decision for yourself. I know I have been critical of opponents of the bill, and while I do not resile from most of that criticism, I know that much of the opposition comes from a place of goodwill, even though I believe it is misguided.
Voluntary assisted dying, when passed, will not see one extra person die, but it will see some facing painful and undignified death pass a little sooner, a lot more gently and on their own terms. Importantly, and often ignored by opponents, it will see many not use or attempt suicide in a lonely and wretched way due to the anxiety they feel about a pending ugly and painful death where they will be denied control of their end of life by the State. In my opinion, the bill will see a reduction in suicide under these circumstances. Opposition to the bill may come from heartfelt beliefs, but please apply your beliefs to your lives. Unless you have walked in the shoes of someone facing a painful and undignified death, do not be so cruel as to stand in the way of this legislation. Yes, it is time we respected the rights of a terminally ill person to self‑determine one of the most important parts of their life—their death. It is time we allowed them a choice to die with dignity. I commend the bill to the House.
Ms FELICITY WILSON (North Shore) (12:00:09):
I contribute to the second reading debate on the Voluntary Assisted Dying Bill 2021.
Death comes to us all. Being dead does not matter. It is a consequence of being born. It is a final universal experience.
But getting there, how we die, does matter, and many of us do not find the gentle or sudden death for which we hope. Many of us here will find only wild deaths at the end of the road. We may wish that it was otherwise, but it is not.
Those words were spoken on the floor of this Chamber 25 years ago, not by a member of this place but by former longstanding Liberal Senator and advocate for voluntary assisted dying Professor Peter Baume, AC, who is a member of my community. I commence my contribution on the Voluntary Assisted Dying Bill 2021 by putting those words on the record because they convey an enduring and undeterred intergenerational push for reform, a journey that has been underpinned by liberal values. I am in this place as a staunch advocate of liberalism. It is the right of the individual to make decisions for themselves. That liberty should be unfettered by the views and values of others, no matter how deeply felt or well meant, if the action does not harm others.
That liberal philosophy of John Stuart Mill underpins our democracy, our laws and our decision‑making. It enshrines our rights and liberties, and it empowers our autonomy and choice. For too long, people at end of life have endured extreme suffering. For those small few whose pain cannot be alleviated sufficiently by palliative care, there has either been the requirement to continue suffering or the potential for an assisted suicide or hastened death in a murky, unregulated, likely illegal and hidden manner. That is not choice; that is not liberty. Today we take the steps to right that wrong, to return choice to individuals and to empower people to exercise autonomy over their own lives. Supporting legislative reform that enables a person to end their life is not an easy action to take, even if it is a clear decision.
I recall quite clearly a conversation I had with my grandfather well before I was in this place about the euthanasia debate, as it was then known. I had quite wrongly assumed that this conservative man would be in fierce opposition. I had not taken a view; I was young and healthy and was not thinking about end of life. He floored me with his observation. He said to me that it was the young and the healthy who make the laws but it is the sick and the old who have to live with it, even if they cannot bear to live any more. To think that all these years later I would be in a position to make our laws and to make them in recognition of his advocacy for the continuing liberty of those individuals afflicted with a suffering that I have never experienced, I can only say that it is bittersweet that I get to make this decision.
It is not an unusual experience to have to legislate on matters that we have never experienced personally— and we hope not to—which is why the values that we bring to this place and the ideals of our communities must guide us at every step. Since I was first elected as the member for North Shore, I have listened to the views of my community on this important matter. I have held community forums, hosted speakers for and against the issue, and executed surveys of my community. I have had many thousands of contributions from constituents, and the overwhelming majority of them have urged me to support the bill. I thank each and every person who has reached out to me, particularly those who have shared their deeply personal experiences whether in support or opposition. I share some of those testimonies today.
Paul from Mosman shared with me his story about both of his parents. His parents both lived in Victoria until their death. His father passed away through the Victorian Voluntary Assisted Dying [VAD] program in July last year, and then in April this year his mother chose the same course. Paul's father had been diagnosed with inoperable brain cancer and Paul said that "he did not hesitate in going down the VAD route". During around the COVID‑19 restrictions last year, Paul took a few opportunities to visit his father in his last few months. The day his father was given permission to proceed he told Paul that he would take the medication the following day.
Paul's mother had emphysema for more than 20 years, but when the illness really took its toll on her and she was at a weight of just 26 kilograms, she also decided to enter the VAD program. While Paul's visits were limited, he made the most of them. He was also there when the specialist met with his mother to assess her for VAD, and he noted that he could not participate in the discussion due to the very strict laws to mitigate the risk of family influencing a patient's decision. While his mother took a few months once she had approval for the medication and before she took it, he said that once she had that approval, the sense of control gave her relief in her final weeks.
Kate from Mosman shared her recent experience of the death of her husband. Kate's husband was diagnosed with terminal cancer and she described the traumatic final days of her husband's life to me. The experience is still very raw and it continues to cause distress for her and her son, who was just a young adult. The doctors sent him home to die and Kate cared for him and loved him and helped to clean him up when he lost control of his bodily functions, even though he was mortified about it. Kate said that she had no choice and he had no choice but for him to suffer and the family to watch him suffer and just help him in any way they could. She knows that her husband was a dignified man who died without the dignity that he sought.
I have heard from many other constituents and community representatives describing their experience of watching the slow and painful deaths of their nearest and dearest or the distress of coping with a degenerative or terminal illness. I have also heard from doctors, nurses, health workers and carers who have witnessed many patients at the end of their life and can recount the distress and suffering of those patients. The scope of the bill shows that we are not taking this matter lightly. The requirements to voluntarily end one's life will be restricted to people who are terminally ill and whose extreme suffering cannot be alleviated. It requires an enduring request from a competent person. The bill contains strong safeguards. There will be multiple assessments for decision‑making capacity and to determine whether the patient is acting voluntarily and without pressure or duress.
Two doctors with prescribed experience and mandatory training will be required to assess and approve the patient's request and can seek further assessment where appropriate. Before any doctor can participate in the scheme, they must have conducted training approved by the Secretary of NSW Health, which will include how to identify signs of coercion. The legislation also includes a number of new offences with high penalties, including life imprisonment, for unauthorised administration of substance and seven years imprisonment for inducing someone to apply for VAD. The bill considers our healthcare professionals and the role they may play in voluntary assisted dying. It acknowledges that they will not be forced to take part in voluntary assisted dying and can conscientiously object or not participate for any reason. The bill respects the rights of medical practitioners and medical institutions that may hold religious or other objections. Provisions in the bill enshrine the ability for hospitals and residential facilities to have a policy to not provide VAD services.
We have heard, and will hear, from those who oppose the bill very well‑meaning and considered contributions, from those who fear the slippery slope or dire consequences for the vulnerable in our community. But we must vote on the bill before us—a bill that is constrained, detailed, robust and reflects the evidence and experience across the globe and across every State in Australia. For those who have concerns about quality of and access to palliative care, I agree that we must do more. For those who have concerns about people with disabilities, I agree that we must do more. For those who have concerns about our First Nations people, I agree that we must do more. But none of those actions are mutually exclusive with acting on voluntary assisted dying.
New South Wales must have one of the best palliative care systems in the world, and I welcome the Premier's personal commitment to achieve that goal. But what about those whose suffering cannot be alleviated by palliative care regardless of funding, training, capability and accessibility? Global and local evidence shows that palliative care can relieve all suffering in about 80 per cent of people. For a further 15 per cent of people, palliative care makes a sufficient difference to tolerate pain. But what about the 5 per cent of people whose suffering can never be alleviated by palliative care? With the best funding and support for palliative care, the moral problem remains, even if one person cannot be helped. The bill addresses that moral obligation.
Extension of time
Lastly, we must acknowledge that forms of assisted dying already occur each and every day across this State. Studies over many decades have shown that this occurs behind closed doors and is unregulated, and takes place without protections for the vulnerable, the ability to include family members, medical practitioners working together for the patient and a robust model of consent—essentially, without ensuring that it is voluntary. Quite rightly, we should all be wary of the risk of abuse or coercion, but the status quo already enables this to occur. Any efforts to address this should be undertaken with or without a voluntary assisted dying regime. I seek an extension of time. []
Perhaps worse than this hushed-up hastening of deaths are the horrific and lonely suicides that occur in the absence of this reform. Coroners in a number of States have shared graphic and powerful testimony about the problem. The Victorian coroner revealed that suicides are occurring at a rate of one person per week. A safe framework for voluntary assisted dying can help to reduce the incidents of patients resorting to that option. For those who oppose the bill, I ask of them: What action will you take to end these practices? Fundamental to the bill is its voluntary nature, with a framework to ensure that choice rests with the individual to the exclusion of other interests.
I thank the member for Sydney for bringing the bill to the Parliament and for the detailed and lengthy work that he has undertaken to ensure that we can vote on this reform for the people of New South Wales. I thank the organisations that have played a part in the creation of the bill. I particularly note Penny Hackett and Shayne Higson from Dying with Dignity NSW, whose steadfast and indefatigable efforts over many years I have had the privilege of observing. I thank the Council on the Ageing NSW, the NSW Nurses and Midwives' Association, Go Gentle Australia, Christians Supporting Choice for Voluntary Assisted Dying, Doctors for Assisted Dying Choice, the AIDS Council of NSW, Cancer Voices NSW, the Australian Lawyers Alliance and Palliative Care NSW, as well as other members of the NSW Voluntary Assisted Dying Alliance. I also thank my fellow co-sponsors of the bill from both Houses across the parties.
I support the bill not because I am a Liberal, but the values that make me a Liberal are the same values that compel me to support a bill that empowers individual choice in the absence of harm to others. I support the bill not because I am a Christian, but the compassionate faith with which I was raised is entirely consistent with the goal and outcome of a bill that frees a person from intolerable suffering. I know not all Liberals nor all people of faith will support the bill, but I know the vast majority of people in New South Wales and in my own community of North Shore want to see this reform. More importantly, those who seek autonomy to end unbearable pain are crying out for this change. My vote will not decide what a person does at the end of their life; it merely ensures that they will be able to make that decision. That is a right that should be inalienable for all of us. I commend the bill to the House.
Dr HUGH McDERMOTT (Prospect) (12:12:27):
The Voluntary Assisted Dying Bill 2021 is the most heinous piece of legislation ever introduced to this Parliament. The proponents of the bill have attempted to define the debate as one of progressive and compassionate ideas. However, the truth is that this legislation and the arguments for its introduction are regressive and move the priority from care to death. Supporters of voluntary assisted dying explain their reasoning based on personal experience and define, with good intentions, decency and perceived compassion. However, to base the debate solely on emotional and personal experience serves as a disservice to the legislative process and evidence-based policymaking, and to members of our community.
Legislating voluntary assisted dying in New South Wales will have far-reaching consequences, in particular for our community's most vulnerable people and for public policy more broadly. It is important to acknowledge that there have been many attempts to frame this debate around matters of religious faith. However, there are religious and non-religious people on all sides of the debate. To frame the debate solely as a religious issue simplifies and degrades what it is: a highly complex and technical public policy matter. The debate must be framed for what it truly involves: a failure of public policy and human rights, and a desperate attempt to resolve this failure through what seems to be the only viable alternative to suffering. We need to leave emotional stories outside the Chamber and discuss the bill's major implications for the criminal law's general prohibition against killing the innocent.
By enabling eligible patients to access assisted suicide, the Voluntary Assisted Dying Bill 2021 will essentially devalue the sanctity of human life and destroy the immensely important bond between a doctor and a patient. Currently, the law in New South Wales does not permit the killing of any person, regardless of the circumstances. Arguments of self-defence and necessity in such matters must be tested before a court of law, and the law does not permit a person to consent to having harm done to them by another. Human life is important and is protected by our State. When we abolished the death penalty our society moved away from draconian legal responses. We removed the prosecution of persons who attempted suicide and understood that mental health support must play a critical role in suicide prevention. Our society now champions human rights and the rights of individuals to live with dignity and respect. Any exception to the law banning the killing of the innocent or assisting their suicide contradicts the duty of the State to protect the lives of its citizens, especially the weakest and most vulnerable members of society. Introducing voluntary assisted dying changes this approach.
To legislate the legal means to kill another person breaks the progress of our society in valuing human life over death. It is a regression of the human rights that we have worked so hard to achieve. It places value on each person's life and transfers that value judgement to medical practitioners who are supporters of voluntary assisted dying or, when a patient's consent is not available, patients' deemed carers. It makes death an alternative to proper support and care. The bill is 81 pages long. I understand it is no easy feat to draft a bill with this level of detail, and I appreciate the commitment of the Parliamentary Counsel's Office and others in drafting it. However, with all due respect, we must be concerned that a bill of this length, which requires such a level of explanation, is confusing and provides a lack of understanding of the key issues involved.
As I am limited to a maximum of 15 minutes of speaking time, I am unable to analyse the bill section by section. However, I will attempt to discuss some of its major concerns and how its introduction will lead to abuses in New South Wales. The lack of involvement of specialised palliative care and end-of-life medical professionals within the operation of the bill is one of the largest problems with this legislation. Part 2 sets out the requirements that a patient must meet to access voluntary assisted dying. Part 3, division 1 explains that a patient must make a first request to a medical practitioner to begin the process. That medical practitioner can be a general practitioner, as there are no provisions in the bill that stipulate that the medical practitioner must have any specialisations or qualifications in palliative care.
The medical practitioner, referred to in the bill as the "coordinating practitioner", must determine whether the patient meets the eligibly criteria to access voluntary assisted dying. The coordinating practitioner must then notify the Voluntary Assisted Dying Board and refer the patient to a second medical practitioner, named in the bill as the "consulting practitioner". The second medical practitioner, who also does not need to be a specialist in palliative care, will then determine whether the patient is eligible to access voluntary assisted dying. The patient must make a written declaration and then make a final request to the coordinating medical practitioner. The process between the first and final request by a patient can occur in as little as five days. No provisions in the bill require either the coordinating or consulting practitioner to consult with any health professionals who specialise in palliative care or end-of-life treatment, or a medical professional who has a history of medical care with the patient.
In addition to not being a specialist, a doctor does not need to be in the same room as a patient to receive their request for euthanasia. First and final requests for lethal drugs are permitted to be made and accepted via telehealth. That paves the way for a doctor to approve the death of a person they have never physically examined or in fact had an ongoing professional relationship with. I ask the Chamber how we can expect the coordinating and consulting practitioner to adequately and professionally determine whether a patient has been given all the possible options for treatment to help manage their terminal illness, or be given the best chance of living a longer life with suffering, if there are no end-of-life experts consulted throughout the process.
Part 10, division 9, section (176) (1) of the bill explains the requirements of the Voluntary Assisted Dying Board. According to the bill, the board is only required to record statistical information about patients and if they live in regional New South Wales. No provisions in the bill establish that any member of the board must be a specialist in palliative care. In fact, the bill does not require that any medical expert to be on the review board. It only mandates the presence of an experienced lawyer. Unlike the Victorian bill on euthanasia where doctors and healthcare practitioners are prohibited from raising the issue of euthanasia with their patients, that protection is not provided in the New South Wales bill. That means a doctor can suggest it as part of a consultation. Part 1, division 4, section (10) (2) of the bill stipulates that a doctor may suggest voluntary assisted dying if the medical practitioner informs the person about treatment options and palliative care services. I am deeply concerned about that subsection as palliative care services are not widely available or understood across the State.
Extension of time
When a person is terminally ill, they require a significant level of care. As much as we wish our loved ones will have a long and healthy life, many sick family members may see voluntary assisted dying as the only way to lift the burden from their families. Worse yet, for those terminally ill and elderly persons who do not have a solid unit of loved ones, voluntary assisted dying can lead to a means of elder abuse. I seek an extension of time to conclude my comments. []
The Royal Commission into Aged Care Quality and Safety showed horrific abuse of the elderly in care homes, and by staff and family members. We see countless cases before the courts of family jealousy, greed and dysfunction, especially involving inheritance. This legislation will allow perpetrators of that abuse to take the issue further than ever before. To say that by legislation we will stop similar abuse towards vulnerable people facing the end of life, is simply false. In countries that have introduced voluntary assisted dying laws we have seen legislative expansion, despite the original legislation being clear in its intent and safeguards. In Belgium and the Netherlands, voluntary assisted dying was extended to newborn children, the mentally ill, dementia patients and those with mental and intellectual disabilities, including autism.
The bill does not disqualify a person from accessing euthanasia if they have a mental illness, including a diagnosis of clinical depression. There is no way that the current voluntary assisted dying advocates can guarantee that this will not happen in New South Wales. It is already happening in other jurisdictions. Voluntary assisted dying will open the way for the euthanasia of the mentally ill, the depressed, individuals who feel as if they are a burden to their families, the vulnerable, the abused and those who cannot afford top level health care. In society we deplore suicide, yet this bill will normalise suicide in New South Wales. Members must pause and reflect on their responsibilities as a parliamentarian. We must be aware that our actions today will cause consequences for lives in the future.
I will reflect on a number of policies that parliamentarians such as ourselves have voted for in the past with good intentions, but they resulted in barbaric laws—the forced assimilation of our First Nations people, the Stolen Generations; racial discriminatory immigration laws; the sterilisation of the mentality ill and disabled; and the criminalisation of homosexuality. Those were all policies supported by the Parliament and government of the day which later generations, including our own, now condemn. In the future, voluntary assisted dying will fall into that category. History will not judge its advocates and supporters kindly. It will be found to be a barbaric law that undermines the value of human rights and the care of the vulnerable. We must pass legislation that secures the right to life for all citizens and vote down any legislation that weakens the capacity of the State to protect its citizens.
To legislate voluntary assisted dying would be a step in the wrong direction; it would take the focus off providing dedicated and well-resourced palliative care to all who need it. Well-resourced palliative care is the real solution to alleviate suffering. However, we are confronted with a palliative care crisis in New South Wales. The recent Royal Commission into Aged Care Quality and Safety reported that residential aged-care staff tend to be under skilled or under qualified to manage palliative care adequately. The commission recommended that palliative care should be considered a core business for aged-care providers; however, currently it is not. In many parts of remote and regional Australia palliative care is non-existent. Rural and regional MPs should lobby for significant palliative care funding and strategies, not using voluntary assisting dying as an alternative option. Currently, access to palliative care depends on a person's postcode. That should not be the case. With the introduction of voluntary assisted dying, we are valuing human life according to social class—a class that can afford dedicated palliative care services and a class that has no choice but to choose suicide.
The bill has received limited support from a number of doctors in New South Wales. However, it is my understanding that none of those doctors are specialists in palliative care. In fact, Palliative Care NSW opposes the bill. If we were to consult with the medical specialists—those with the highest order of understanding about what is required for patients at the end of their life—we would find there is little support for voluntary assisted dying. This Parliament must support the vulnerable in our society—the marginalised, the sick, the elderly and the disabled—and vote against a law that opens opportunities for those people to be abused and ultimately killed. We must vote against legislation that favours the lives of those who can afford health care, but encourages the death of those who cannot. I oppose the bill, and I encourage my parliamentary colleagues to do the same.
Mr KEVIN CONOLLY (Riverstone) (12:27:47):
I contribute to debate on the Voluntary Assisted Dying Bill 2021. Like the Premier, I oppose the bill in principle. But I also take on board the points made by the member for Ku-ring-gai and the member for North Shore that as parliamentarians we are being asked to vote on a particular bill, not just on a principle. And we should pay close attention to what is in that particular bill. This bill would permit one person to kill another and it would permit a person to provide the means for another to kill him or herself. The proponents are squeamish about that language, yet there is no doubt the bill would legalise killing, in the form of euthanasia, and assisted suicide. Those are the facts. If it were not so, we would not be having this debate. A change to a fundamental principle of our law is being proposed. I make no reflection on the motivations of those who take a different view. I recognise sincerity, genuine concern and strongly-held passionate views in people on both sides of the issue. Yet, in my view, it is simply not safe to change the law in this way. I believe that inevitably it would leave vulnerable, voiceless people at risk of premature involuntary death. For that basic reason, I oppose the bill.
The military have a term for the unintended deaths that occur as a result of military action. They call these deaths "collateral damage". I believe it inevitable that this kind of legislation will also bring about collateral damage if it were to pass in New South Wales, just as we have heard about collateral damage in other jurisdictions that have had laws like this for longer periods of time. One way in which that would occur is simply to recognise that doctors are not infallible. Diagnoses and prognoses not only can be wrong but are wrong a certain proportion of the time. If a person is told incorrect information and makes a decision around accessing voluntary assisted dying [VAD] on the basis of that incorrect information, that person would be denied a properly informed choice. That would not be fully voluntary.
We have also heard from many speakers, and we know from our own experience, that elder abuse is real. Subtle pressure applied over an extended period can lead to vulnerable people doing things they ordinarily would not choose to do. You do not need to be a mem MP for too many years before you get cases through your office showing the ugly side of family dynamics when wills, inheritances and properties are involved. In this situation, that subtle pressure, that exertion of pressure on somebody who is vulnerable to being persuaded, cajoled, manipulated can lead to fatal consequences.
In this bill there is a presumption of decision-making capacity. I ask why a presumption rather than a standard or a test to satisfy, given the gravity of the decision involved. Why is there no psychological assessment required? Obviously the possibility of depression is quite high in circumstances where a terminal illness has been diagnosed. This bill sets the bar dangerously low. That too is one potential path to that collateral damage because there is no test, no criteria, no standard and no process stipulated to determine whether a person has capacity to make this very grave decision. If there are no specific rules stipulated to be followed, there are no rules that can be deemed to have been broken. Any enforcement action relating to decision-making capacity will be simply impossible.
Beyond all of that, there is the reality of noncompliance with the law—people cutting corners; sadly, some people knowing best for others; conniving with those who have improper motives in the family, as we have considered; things that are the ugly side of human nature that we should not be opening a door to. All of these can lead to the collateral damage of involuntary deaths. I believe they are inevitable if we pass legislation of this kind. So the question becomes: If we pass such a law, what level of this collateral damage is acceptable to this Parliament? Can we vote in good conscious, knowing that would be a concomitant outcome? That might sound like a rhetorical question, but, unfortunately, in this debate it is a matter of life and death, so it is a very real and very serious question.
We have been told that this proposal will provide dignity. The debate has been framed in a way that is presented as a choice between suffering and indignity in a small number of cases on the one hand and, on the other hand, dignity and the absence of suffering. We have heard much said about the reality of those small number of very difficult deaths. Yet how much do we really know about the alternative that is being proposed? We have been told the bill will enable death with dignity, but that is all we have been told. What kind of death will actually occur if this bill passes? How do you and I, the MPs who have to vote on it, know? We cannot know because that level of information is not in the bill. Just what is it that we are being asked to legalise? Where in the bill does it explain what substance is being legalised or what form of administration is to be permitted? Where can MPs look to find out what will actually be done to people if this bill is passed? Why is it that that key information not in the bill? Why are we being asked to legalise something as drastic, as irretrievable as killing another person without all the information being in front of us? You would not buy a car if the salesperson would not let you look at it first, give it a test drive, answer specific questions about its design and features and so on.
Yet we, as elected representatives of the people of New South Wales, are being asked to buy the proposition that we should legalise a means of delivering death without knowing what that means is. We do not know what substance or what method of delivery will be used. We do not know the effects that this substance and administration will have on different people, how long it will take different people to die, or what they would experience during the process. We cannot know any of that because, under this bill, we are effectively going to outsource all of that detail to a bureaucrat. Members, this is a life and death decision for us. Few of the matters we debate in here ever reach that threshold. It is unthinkable that we should pass a bill that crosses this threshold without ourselves knowing exactly what we are permitting.
If the rationale offered for taking this momentous leap is to provide the option for a more dignified, less painful death, should we not at least satisfy ourselves that we explicitly know what would be done to achieve that end and that it will, in fact, have the outcome that is intended? This bill has many flaws. I have heard members say it is the most robust and most well-prepared bill in the country. To that, I will give one simple response: five days. That is less than for other bills around the country between the first and last step in this process. So this cannot be the most robust, most safeguarded, strongest, best protected system on offer. It is far from that. If I had unlimited time, I would talk about many other flaws in the supposed safeguards.
Extension of time
The bill does not contain the safeguards for vulnerable people that it should. It does not sufficiently respect the right of those who in good conscience want to have no part of this. They are, in fact, obligated in the case of an aged care facility to allow it to occur on those premises, in the residential home of people who have chosen to be in a context where they would not expect that to occur. It does not give the DPP or the Coroner or the police sufficient capacity to maintain oversight on behalf of the community because it restricts the right to prosecute to the Health Secretary. It does not even contain the protections that previous bills presented to the New South Wales Parliament contained. It is weaker in many respects, many protections than the 2017 Khan bill that was defeated in the Legislative Council. []
I have been told that those behind this bill have said to some members, "Well, it is what it is. It won't be changed. If that is the case and you know that it is not the best law available, even if you were inclined to accept the principle, then you should not support it. This is too grave a matter to accept something that you know as a member of this place with a responsibility to vote for the future of the people of New South Wales; if you do not believe it is the very best to suit the purposes being offered, you should not support that. Disturbingly, given the life and death nature of this issue, the bill proposes to take decisions for a prosecution for an offence under the Act out of the hands of the independent prosecuting authority of the DPP and place it in the hands of a bureaucrat, the Health Secretary—and this is in the proposed section 134.
The Health Secretary has no expertise in the business of prosecution, nor any investigative capacity. Disturbingly, nor is the Health Secretary at arm's-length from the agency involved in administration of VAD. Surely the business of putting people to death should be the very last activity you would consider appropriate for self‑-regulation. It is essential, if we go down this path, that that should be independent of, separate from and at arm's‑length from those involved in administering the process. There is no mandatory reporting to the Coroner, whose access to records about the whole process is restricted by proposed section 130. Worst of all, the bill imposes a two-year time limit on the commencement of any prosecution. This is an extraordinary proposition when the stakes are so high. There is no coming back from a decision that involves death. In effect, the combination of these provisions works to prevent prosecutions from ever being likely, regardless of whether wrongdoing occurs. In fact, the strongest protection in this bill is for the doctors involved because they are deemed to not be liable if they believed they were acting in accordance with the law, not if they actually were. The protection for them is greater than it is for the vulnerable people for whom this bill really matters.
I turn to one other specific example before I finish my contribution, namely proposed section 28. It appears to impose some obligations on the coordinating practitioner. The first three of those state:
… the coordinating practitioner must inform the patient about the following matters—
(a)the patient's diagnosis and prognosis,
(b)the treatment options available to the patient that would be considered standard care for the disease, illness or medical condition with which the patient has been diagnosed and the likely outcomes of treatment,
(c)the palliative care and treatment options available to the patient and the likely outcomes of the care and treatment …
However, under this bill the coordinating practitioner does not need to have expertise in any of the areas that would allow that person to give that information. They are not qualified to do so—or, at least, not necessarily; it is not a requirement of the bill. Here we have the first three fundamental obligations of the coordinating practitioner, which could be carried out by a person unqualified to carry them out. It is a nonsense in terms of protections. At the very least, if somebody is going to be able to do those things they must have the requisite expertise or they have to undertake the consultations to acquire that relevant information.
But the bill does not provide for that. The bill does not require that either of the doctors involved in this decision have any relevant expertise in the condition the patient is suffering from. The bill does not require that either of the doctors involved in making the decision has to consult the treating practitioner. The bill does not require that either of the doctors involved in making the decision has expertise in palliative care in order to be able to provide the information required in proposed section 28. The bill is incoherent even in itself. It does not set up a structure that would allow compliance with proposed section 28, at the same time as the requirement is placed on who can be the coordinating practitioner.
In fact, I think what looks like a whole lot of detail, protections and structure is an edifice designed to confuse, to hide the weaknesses in the bill and the fact that it is really about facilitating the process of voluntary assisted dying, not about protecting those who may unwittingly, involuntarily be caught up in this process. That is the fundamental problem here. I finish with the words of the Archbishop of Canterbury, Justin Welby, in a debate on this issue in the United Kingdom not so long ago. He stated:
… no amount of regulation can make a relative kinder or a doctor infallible. No amount of reassurance can make a vulnerable or disabled person feel equally safe, equally valued, if the law is changed in this way.
…
But it does not serve compassion if by granting the wishes of one closest to me, I expose others to danger.
And it does not serve dignity if in granting the wishes of one closest to me I devalue the status and safety of others.
I oppose the bill.
Ms SONIA HORNERY (Wallsend) (12:43:19):
The Voluntary Assisted Dying Bill 2021 is supported by 90 per cent of the Wallsend electorate and so I am supporting them. I am proud to be one of the many MPs co‑sponsoring this important, overdue and vital bill. We members of Parliament make legislative decisions that have an enduring impact upon the lives of people in our communities, thus our role as listeners and reflectors of community sentiment is vital. I thank the member for Sydney for the incredible amount of time and effort he has put into shaping this overdue bill. I thank Dying with Dignity New South Wales, all the rest of the volunteers and the Go Gentle Australia mob for all of their hard work too. The bill gives terminally ill patients the choice to end their severe pain, suffering and incapacity on their own terms. Those are the operative words: choice about leaving on a person's own terms.
Outdated New South Wales laws put patients and health practitioners at risk. Some doctors have acknowledged that people are being assisted to die right now. But this practice is hidden, unregulated and potentially unsafe. With no law to help them and racked with excruciating pain, the terminally ill may feel that the only way to end their pain is by using violent methods to take their own lives, alone. The best palliative care does not relieve pain and suffering for many—the 5 per cent of terminally ill patients for whom no amount of opioids will stop the excruciating pain that the member for North Shore referred to in her contribution to this debate. Making matters worse, friends and family are powerless to help them. They witness the horror of their loved one not gently fading away but, rather, dying overwhelmed by pain. I say to members that we are talking about dignity here.
The bill offers a safe framework for patients whose death is imminent and whose pain and suffering has become unbearable to end that suffering at a time of their choosing. It follows the same eligibility, process and safeguards as bills passed in all other States of Australia. New South Wales is the laggard of twenty-first century reforms. The bill has a number of important safeguards against coercion, addressing the concerns that a small number of constituents have raised with me. I will discuss the Victorian model. The most recent report from Victorian Health shows that since that State's Act commenced in June 2019 some 581 people have been assessed for eligibility to access voluntary assisted dying. Some 465 permit applications have been made, 405 permits have been issued and 224 people have died from taking the prescribed medications.
The report provides details about who is accessing voluntary assisted dying. Applicants were aged between 20 and 100 years and the average age was 71. Some 47 per cent of applicants were female. Some 87 per cent were living in their own home at the time of the application. Some 67 per cent administered the medication themselves. Some 77 per cent had a malignancy diagnosis, such as lung, breast or gastrointestinal cancer. Finally, 23 per cent had a non-malignant diagnosis, with 62 per cent of those having a neurodegenerative disease. We all know someone who has been in this impossible, agonising position. I spoke with Stanley, a Lambton constituent. Diagnosed with brain cancer in November 2014, it has now progressed to terminal status. He told me:
I've always known my life was time limited. Two to five years was the original prognosis, but when the cancer spread to multiple locations, inoperable and deep in my brain, it was likely "weeks to months".
I've been lucky, I keep on ticking. However, despite my luck, I know at some point my luck will stop.
If I'm "lucky" I'll have a massive stroke and die instantly.
If not, I face the possibility of becoming bed-bound but still knowing and understanding everything going on around me, but helpless to do anything or care for myself. Knowing what I want to say but unable to say it.
Right now, I've already started this path of pain and immobility.
Speaking of pain—most pains are pretty easy to treat more or less, you just fill your body full of opioids. However, brain nerve pain is tricky. You can't do that because you might cause a seizure and kill the patient. So you can find times when you are very limited in pain relief options.
This all comes back to the voluntary assisted dying question. I prefer to think about the question in a different way.
If you are in horrific suffering, be it pain or otherwise AND the best of science has done everything they can, surely then voluntary assisted dying must be an option for those that choose it?
I know it's not for everyone, I understand that. Whether it be religion, ethics, or just a very strong "will to live", some people will be against voluntary assisted dying and I can understand that, and feel for them.
But when the time comes and I am in pain, suffering, immobile, no quality of life and, importantly, only getting worse—what are the benefits in prolonging my suffering?
I know that this bill will not help me as it will not be in place in time for when I leave this world, but I want my thoughts, my hopes for voluntary assisted dying reform on the record.
I want this issue to be more than just a passing thought. I have been an advocate for some time.
Voluntary assisted dying is a liberal choice for the dying, for whom death is inevitable and imminent and who deserve the right to exercise the autonomy that is at the heart of what it means to be human: the exercise of free will. Can we be part of a compassionate community, affording freedom of choice to people at their end of life, and respecting their choice for a peaceful death? Yes, please. This bill strikes the right balance and offers the appropriate safeguards. It is time. I commend the bill to the House.
Ms TAMARA SMITH (Ballina) (12:52:00):I speak in support of the Voluntary Assisted Dying Bill 2021.As a co-sponsor of the bill I proudly stand with the other 27 co-sponsors in bringing this important and longoverdue change in the law. I thank the member for Sydney for initiating this legislation and for the open and transparent way in which he has engaged with all members and the broader community about the details and the intention of this law. I thank all of the constituents in the Ballina electorate and beyond who have written to me to express their views. Overwhelmingly, people in my area have expressed strong support for this important law reform. People have shared with me heartbreaking stories of personal experience of watching loved ones with terminal illnesses at the end of life, for whom palliative care could not alleviate their suffering. It is important to reiterate that the bill enables people with a terminal illness at the end of life to make that decision.
I am grateful to Dying with Dignity New South Wales and Go Gentle Australia for their ongoing and tireless work and their incredible resources, including State of Suffering NSW: Testimonies of the damage done in the absence of a voluntary assisted dying law. I thank everyone who contributed their testimonies, particularly my own constituent, Cathy Barry, who wrote about the terrible suffering of her brother, Tom. It is not easy to talk about the pain of watching a loved one who is suffering die,and for whom palliative care as it stands in New South Wales cannot assist. I thank Cathy for her courage in sharing those stories. I thank the 100 doctors, the Aids Council of New South Wales, Cancer Voices NSW, Australian Lawyers Alliance, Humanists Australia, Christians Supporting Choice for Voluntary Assisted Dying, the Rationalist Society of Australia, the National Secular Lobby, Marque Lawyers, and Nicholas Cowdery, AO, QC, for their submissions.I note that I rely on their work in my speech.
The Greens NSW have a long history of supporting a terminally ill person's right to voluntary assisted dying and to die with dignity at the end of life with important safeguards to protect them from abuses. As we know, most States in Australia have voluntary assisted dying laws, and many democratic countries around the world have had these laws for many years. I do not support the argument made here today that those laws open up extreme euthanasia laws or that it sends a signal to people that if they are suffering they should take their own life. As someone who has experienced a close, loved person taking their own life, and experiencing loved ones at end of life who would have benefitted tremendously from this law, I see the conflation of those as archaic and false. The Voluntary Assisted Dying Bill 2021 is named as such because of fundamental reasons that challenge some of the arguments. It is voluntary because it is the freely formed choice of the person involved. It is assisted because medical professional assistance is required to carry it out with dignity. It is dying because it is at the end of life that it is contemplated.
Just this week in this place we passed landmark reforms around consent laws founded on the principle of bodily autonomy and a fundamental element of legal equality before the law: the principle of agency and the right of self-determination in respect of one's own self. While I understand that this principle at times comes into conflict with a person's religious or moral convictions, it is important to remember that we live in a secular, legal democracy and that, as Michael Bradley notes:
To insist on subsuming the universally accepted principle of personal agency below a religious or moral conviction which is not universal, is to depart radically from the practice of making laws on a strictly secular basis to doing so on the basis of personal and controversial beliefs.
I resist the urge to compare what that looks like around the world where religious dogma informs laws. The main opposition to voluntary assisted dying is being driven by religious clerics and highly motivated religious lobby groups that represent a tiny proportion of the population. As was revealed in Neil Francis' deep research, Religiosity in Australia: Part 1: Personal faith according to the numbers, religious clerics are completely out of touch with their congregations. One statistic mentioned today, and one that I echo, is that in 2019, 76per cent of Catholics said that they support voluntary assisted dying laws.
additional and ongoing funding for palliative care and voluntary assisted dying can coexist.Religious hospitals and aged-care homes should have to provide access to legal healthcare services, which would include voluntary assisted dying once enacted into law, if they wished to qualify for government funding. I understand that some peoplewill not be choose voluntary assisted dyingdue to their religious and moral beliefs. That is why I am proud to live in a democratic society. But we must not prevent the overwhelming majority of people in our community, who wish to have the option of voluntary assisted dying with important safeguards, to be denied this because of the religious beliefs of a few,particularly in this secular place. Suffering at the end of life with a terminal illness without the capacity to choose assisted dying is not meaningful. Suffering is not meaningful.
The Greens NSW reject demands for special carve-outs for faith-based institutions. While we support conscientious objection for individual health practitioners, such conscientious objections should not be extended to institutions, especially those that receive large sums of taxpayer money. To correct the record, I note that the member for Prospect claimed in his speech that Palliative Care NSW was against the voluntary assisted dying bill. I have been informed by them, through the member for Sydney, that ""
Throughout my time as the member for Ballina, I have receivedcountless emails and phone calls from constituents who haveendured the miserable passing of a loved one, painfully watching them at the end of life, terminally ill, and palliative care not relieving their suffering. Listening to thosestories is gut‑wrenching and makes me wonder why we, as acivilised State, allow it to continue.I want to share briefly a story from one of my constituents, Cathy Barry,about the wretched end of her brother's life. In 2019, atthe age of 69, Cathy's brother Tom was diagnosed withuntreatable metastatic facial cancer.His doctor gave him six months to live and Tom died sixmonths and two weeks later in Ballina.When Tom asked his doctor about how he would likely die, hewas told that his demise would involve choking, pneumonia,skin eruptions, strokes and bleeding.
After his diagnosis, Tom twiceasked his siblings to help him end his life to prevent thesuffering he was enduring and he told them the worst was yet to come. Unfortunately, Cathy and hersiblings had to tell Tom that there was nothing that they do to help him becausehe lived in New South Wales.Tom received excellent end‑of‑life care from his doctors andnursing staff. Nevertheless, he still suffered terribly in the lastweeks of his life. Specialist palliative care for his severe painand anxiety gradually stopped working in the month before hedied. Tom started to experience loss of consciousness, incontinence and difficulty swallowing. Sadly, Tom passedaway in Ballina District Hospital after enduring several weeks of unimaginable pain, which was severe and unrelenting pain andcould nolonger be relieved.[Extension of time]
Tom was denied the chance to die with dignity insteadof spending his last days in agony. His family sat beside him inhospital as he moaned, screamed, clenched his hands and criedover days and nights. In his final week of life, Tom couldbarely speak, uttering only two words during that week:"Inhumane!" and "Help!"I share that story with Cathy's permission and her family's permission because I do not believe in using people's suffering for political gain. But the reality is that pain management does not alleviate thesuffering of everyone and many live and die withunacceptable levels of pain and suffering from terminalillnesses at end of life.As Dr Catherine Fraser put it:
Witnessing a dying relative linger in the final stages of life, having decided to deny medical treatment and refuse food, is hell. When a practitioner's ability to act with compassion is limited by the law, they are in effect acting against their primary goal to relieve suffering.
With voluntary assisted dying, death can be painless and peaceful.Dr Fraser articulated it very well for me when she said, "Ithink of euthanasia as choosing to die prematurely. I seevoluntary assisted dying as choosing how to die when death is imminent."That is a very sharp distinction. Many safeguards are built into this legislation. I will refrain from going through them, but I want to assure my constituents and everyone who has reached out to me that I am very confident that those built-in safeguards and checks and balances do ensure that the scheme is not abused for improper motives. I pledge that I will be monitoring this legislation, as will all members of this place. We know that at any stage these laws can be reviewed; indeed, they will be reviewed. I hope that before the end of this month I can say to my community that voluntary assisted dying palliative care is now available in the State of New South Wales.
Mr JUSTIN CLANCY (Albury) (13:03:19):At the outset, we should be clear that this is a Rubicon moment for our State and our society. The Voluntary Assisted Dying Bill 2021 provides State sanction for those involved in the intentional taking of a life.Personally, I have sought to be informed—to read, to research and to listen—to give this matter my full discernment. I acknowledge the diversity of views and have absolute respect for people'sexperiences of family and friends passing through their end-of-life experience.
I acknowledge our complex human experience and our unending but valuable struggle to seekbalance in lawmaking that honours all people as of equal value, all lived experience as meaningful andfor our core principles to be worthy pointers to a fairer and safer society.I have met with and spoken with people of faith, and people not of faith, on both sides of this debate.It is not appropriate to deny any person the opportunity to contribute their views, their experienceof life, simply because you place a higher value on your position rather than on their position. Youcan preach from a pulpit or preach from a television program. Influence is everywhere.I adopt the sentiment of Edmund Burke:
Your representative owes you, not his industry only, but his judgement; and he betrays you instead of serving you if he sacrifices it to your opinion.
What is it that has changed in our society in this generation that steers our course in a differentdirection on a core principle to the generations that preceded us? After all, the mechanisms foreffecting the ending of a life have long been available to us. Down the ages,the experiences at end of life are a bondthat we share in.We should be under no illusion that an individual's actions do not impact more broadly on society: "No man is an island …". What is the impact on the individual's first circle of contacts: their family and themedical practitioners around them? How does this reverberate through broader society?
We are in an age where we are endowed with a sense of control. Yet we are constantly reminded by nature that there is much outside of our control. I have seen it proposed that this bill will bring relief, that it will establish a process to assist a person affected by a disease, illness or medical condition that causes suffering to the patient in a way that cannot be totally relieved. A constituent wrote:
The endless suffering must stop not only for the patient but for the loved ones that sit by their side day after day, weeks turning into months and for some of us years.
It is one thing to manage pain; another to manage suffering. Palliative care workers tell me the family member watching a loved one will experience their own personal set of feelings and distress, distinct from the experience of the dying person. They are not the same thing. What is profoundly evident is that individual experiences of family and friends approaching death are compelling and cry out for compassion. Practitioners and professional visitors to palliative care centres are quick to identify where more can be done. For instance, staffing levels may affect the quality of care. One regular hospice visitor said:
The grim almost unspoken reality is that due to staffing levels people are not always surrounded by the appropriate support.
Weak points of current palliative care processes are known. Where it may be redressed through science and funding, we should be seeking to remedy palliative care and make it better. As we explore issues of choice and consent, we should also turn and examine Advanced Care Directives. The document might mention resuscitation, or medications or treatment—broad directions—but then the document might be silent about what should be the steps taken right at the very end of life. Health practitioners tell me they are uncertain about whether those documents are legally enforceable. In an emergency, who has the document? Where can it be found? What does it say? Who bears the risk? One person argues that there is only one person who should be in control. No-one else has the right to impose their views and to this the doctor responds: Is this truly a matter of free choice? Do they have the mental capacity to make that decision? Is there any sense of outside pressure or coercion involved or from within? For some, like another medical practitioner who contacted me, the bill takes our society across a critical threshold. The doctor wrote:
I would like to... discuss my concern, and opposition, to any legislative move to permit physician assisted euthanasia or voluntary assisted dying. It is contrary to the oath I swore when I became a doctor, and is simply bad medical practice. It is not good for patients nor of benefit to our society.
Most of our contemporary debates in Western societies turn on rights and responsibilities.
Transcription in progress…
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