I am pleased today to make a contribution to this incredibly important debate on the Voluntary Assisted Dying Bill 2021.
I begin by acknowledging 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 want to assure everyone who has contacted me opposing the Bill that I have read your emails, listened to your views, and considered them intently.
I understand the reasoning behind your views and I appreciate the conviction with which you 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 you sit on, I have appreciated the long discussions, spirited debate, and the shared sense that we are working on something important, something that will make a real difference for people across NSW.
This is not an easy conversation, but one that is long overdue, and I thank the Member for Sydney for his dedication to it and for bringing this Bill forward and to the 28 colleagues I am proud to join in supporting this Bill in the Parliament.
For me, 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 decisions about our own life - and death.
The Voluntary Assisted Dying Bill seeks to give options to people living with terminal illness.
NSW is the only State in the country where people are not able to access or exercise choice around their death in the circumstances detailed in the Bill.
As the Member for Sydney has outlined, the Bill establishes a safe, 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 legislated by this Bill would work.
I want to touch on a few key facts so as 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 6 months, or 12 months in the case of neuro-degenerative 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 has been raised with me by a number of constituents and by those opposed to the Bill.
I note that the Council for the Ageing NSW put the record straight on this in a recent letter to MP’s. They 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 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 5 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 signs of pressure or duress.
Coordinating and consulting practitioners must be a specialist with one years specialist training or have general registration with at least ten years service.
Administering practitioners must be a doctor with specialist registration or at least five years general registration, be a nurse practitioner, or a registered nurse with at least 5 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.
Speaker, no-one is compelled to participate in this voluntary scheme.
Under the provisions of the Bill, the Health Secretary will determine a list of substances for the purpose of assisting 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 having relevant experience.
There are strict safeguards and rules around the storage and transportation of substances:
- It must be stored in a sturdy, locked box
- It will only be available at select facilities authorised by the Health Secretary
- It must be provided directly to the patient, the contact person or an agent of the patient by the authorised supplier, only after the coordinating practitioner provides the prescription directly to the supplier.
- Any unused substance must be provided to an authorised disposer by an appointed contact person.
This ensures the substance remains strictly controlled.
These are just some of the safeguards in the Bill designed to ensure that the Bill offers choice to those wish to access it without causing harm for vulnerable people.
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 that would like to pit palliative care and voluntary assisted dying against one another, as though one cannot operate without reference to the other.
Both operate with the same goal: to afford people with terminal illness compassion and dignity.
Professor Ian Maddocks, who is often described as the “father” of palliative care in Australia said:
"If compassionate and loving care towards patients and families is what palliative care is all about then assisted dying is 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% of patients requesting voluntary assisted dying were accessing palliative care. In Oregon, the figure stands at 95%.
Perhaps the reason is that 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 to palliative care in NSW to meet increasing demand.
The Premier has reported that the NSW Government spends $22 million a year on palliative care and support each year, with an additional $82.8 million committed over the next four years in the current State Budget.
More money for palliative care is a good thing - it is clear the system remains chronically underfunded and requires additional support.
One issue that has been raised in the course of 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 do currently provide end-of-life palliative care all across NSW and specialists provide palliative care where it is required due to the complexity of the 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 palliative care workers across NSW. You have a difficult, sometimes heartbreaking job, but your care, diligence and empathy have 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 the stress and symptoms of terminal illness. What it can’t do is address the underlying illness.
As the Member for Sydney noted, Palliative Care Australia reports that palliative care may not be able to address between 10-20% of end of life symptoms.
It is critically important that we remember these are not statistics, they are people.
We have all heard from residents over the past few months and years about 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 here.
Kathleen from Marrickville says:
“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 Glioblastoma Multiforme 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 writes:
“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 jewellery maker, and that she is dearly missed.
I am so grateful to each of these women for writing to me and giving me permission to share their stories with you and the House today.
They are just three of many.
As I noted earlier, the momentum for this reform is undeniable, propelled by a wave of popular will and evidence.
NSW is the only State to have not legislated this 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 the first assessment, 583 were assessed as eligible at consulting assessment, 486 permits were issued, and 276 people administered medication.
Polls consistently show that over 80% of NSW residents support reform.
The Council of the Ageing notes that Newgate Research conducted research earlier this year as part of the COTA Federation State of the (Older) Nation report and found that 72% of people aged 50 and over in NSW supported this legislation.
The research also showed that more than half of older people in NSW consider voluntary assisted dying for themselves.
Voluntary Assisted Dying is supported by the Older Persons Advocacy Network (OPAN), COTA NSW, the Older Women’s Network, and by the Health Services Union [HSU], NSW Nurses and Midwives’ Association, the Australian Paramedics Association and the Police Association.
This is common sense reform with strong, broad-based support in the community.
This Bill is a considered, cautious and balanced Bill to get us there.
I acknowledge the important work of Go Gentle, Dying with Dignity and all those advocates who have brought their personal experience, their professional expertise and their passion to this issue.
I know that for many, advocating on this issue can bring up trauma, pain and profound sadness: please know that every email, every letter, every retelling of your story has made a difference here today. Your story does not fall on deaf ears and will be part of the change that is so long overdue here in NSW.
I strongly believe that each of us should be afforded in dying the same dignity, respect and compassion with which we live.
Legislating voluntary assisted dying is about providing end of life options that provide 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 to be terminally ill.
When it is my time to go, if I’m suffering and unable to benefit from further care, I want to say goodbye on my own terms, surrounded by my family, and with the same respect and dignity with which 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.
This Bill treads a challenging path deftly and with the level of consideration and care our community would expect on an issue this important.
It’s principles are sound, offering choice to those dying whilst protecting the rights and beliefs of those who might oppose it.
It’s safeguards are robust, ensuring that agency is afforded to vulnerable people in death whilst remaining resolute against abuse or coercion.
It acknowledges the complexities that present at the end-of-life, whilst remaining simple enough for those who may benefit from it to understand and access.
I am proud to co-sponsor the Bill and commend the Bill to the House.