Wednesday, 5 March 2025

Bills

Voluntary Assisted Dying Amendment (Equity and Access) Bill 2024

Statement of compatibility

Sarah MANSFIELD (Western Victoria) (10:01): I lay on the table a statement of compatibility with the Charter of Human Rights and Responsibilities Act 2006:

In accordance with section 28 of the Charter of Human Rights and Responsibilities Act 2006 (‘the charter’), I make this statement of compatibility with respect to the Voluntary Assisted Dying Amendment (Equity and Access) Bill 2024 (‘the Bill’).

In my opinion, the Bill as introduced to the Legislative Council, is compatible with human rights as set out in the charter. I base my opinion on the reasons outlined in this statement.

Overview

Background to the Bill

In 2017 the Voluntary Assisted Dying Act was passed by the Victorian parliament, the first of its kind to be introduced in an Australian jurisdiction. The Act came into effect on 19 June 2019.

As part of the original Act, a review into its implementation and operation was required within its fifth year. In June 2023 this review was initiated by the Department of Health’s Centre for Evaluation and Research Evidence. The review ran for 12 months, up until July 2024, and comprised focus groups and interviews with 119 stakeholders, along with the analysis of 303 survey responses and 257 written submissions.

The review found that Voluntary Assisted Dying (VAD) in Victoria is operating as intended, and that access is safe. However, the review highlighted several provisions that impede access to the scheme for patients, thereby limiting their end of life choices. Whilst the review’s legislated scope was restricted to the implementation and operation of the Act itself, many submissions highlighted legislative changes required to overcome significant barriers to the scheme, including;

- Removing the restriction on medical practitioners from initiating discussions about VAD

- Amending the provision of administration permits to allow patient choice of administration type, and

- Making various changes to eligibility criteria

Since the introduction of Victoria’s Voluntary Assisted Dying Bill in 2017, all Australian states and territories (except for the Northern Territory) have introduced assisted dying schemes. The most recent was passed by the Australian Capital Territory in 2024.

These schemes provide examples of contemporary and progressive legislative provisions, which are embedded in best practice frameworks from experts in Australia and overseas. Most notable are the Tasmanian, Queensland and ACT Acts.

The changes outlined in this Bill draw on extensive consultation with a broad range of stakeholders including practitioners and families of those who have direct experience with the VAD process. They also draw on recommendations from the Victorian Voluntary Assisted Dying Review Board’s annual reports, and various advocacy groups, as well as assisted dying legislation introduced by other Australian jurisdictions.

Overview of the Bill

The Voluntary Assisted Dying Amendment (Equity and Access) Bill 2024 proposes several changes to the principal Act to remove current barriers to access and ensure equity for patients within the scheme.

Victoria’s Voluntary Assisted Dying laws were nation-leading at the time of introduction. However, five years on, many people who the legislation was intended to help have been unable to access assisted dying due to barriers within the legislation itself. For those who can start the process, many find it distressing due to the design of the scheme, and many die before obtaining a permit. Evidence also suggests that relatively fewer Victorians are accessing VAD than in other jurisdictions.

The barriers in the current Victorian VAD legislation have been well-aired publicly over several years, including through the media, by relevant stakeholder groups, and by practitioners and regulatory bodies involved in VAD provision. With the recent release of the review, I am guided by these years of experience and am satisfied that whilst the scheme is operating safely, several provisions that were included out of an abundance of caution are no longer necessary.

The changes proposed cover many of those raised in consultation with stakeholders, such as removing the requirement for a time-based prognosis to death, removing the restriction on medical practitioners from initiating discussion about voluntary assisted dying, introducing nurse practitioners as co-ordinating and consulting practitioners to increase the VAD workforce and placing some obligations on practitioners who conscientiously object to voluntary assisted dying to ensure they cannot prevent people from accessing it. Importantly, the Bill also implements a three-yearly legislative review into the Act, so that it can be regularly updated in line with changing clinical practice. This could include, for example, future investigation of several emerging considerations in this space but that currently lack appropriate frameworks to support, such as access for minors and the place of voluntary assisted dying within Advanced Care Directives for individuals who lose capacity to consent to the scheme at the end of their life.

I recognise that despite the successful operation of the scheme, some members of the community remain opposed to the concept of assisted dying for religious, moral and other reasons. However, I believe that the objectives of this Bill strike the right balance between the rights of individuals to choose a dignified death, one that alleviates their intolerable suffering when living with a terminal illness or disease, and the interests and beliefs of the wider community, including families, medical practitioners and staff involved in medical care.

Human rights issues.

In my opinion, the human rights protected by the charter that are relevant to the Bill are:

• The right to life (section 9)

• The right to the freedom to seek, receive and impart information (section 15(2))

• The right to freedom of thought, conscience, religion and belief (section 14)

• Equality rights (section 8)

• The best interest of children (section 17(2))

Right to life (section 9)

Section 9 of the charter provides that every person has the right to life and has the right not to be arbitrarily deprived of life.

The right to life, as it relates to voluntary assisted dying, has been widely discussed across many jurisdictions and human rights bodies, including throughout the statement of compatibility provided in the tabling of the original Act. I will briefly take this opportunity to reiterate that death should be acknowledged as the final stage of life itself – and therefore how one chooses to spend their final moments is an integral aspect of one fulfilling this right There are a number of elements proposed in this Bill which positively influence one’s right to choice at the end of their life, and these are outlined below.

Eligibility criteria

The voluntary assisted dying framework established under the original Act was legislated in the context of Victoria being the first Australian jurisdiction to introduce such a scheme. Therefore, several eligibility criteria were included as “safeguards” against the perceived risk of coercion and other malign factors. However, evidence from sources outlined above suggest that certain ‘safeguards’ restrict a person’s right to autonomy and dignity when choosing how to approach the end of life in the context of a terminal illness, disease or medical condition.

Clause 7 of the Bill removes several eligibility criteria that restrict a person’s ability to access the scheme without justifiably protecting their right to life. This includes that the person must be an ordinary resident in Victoria and ordinarily resident for 12 months. With the introduction of legislation in all but one Australian jurisdiction, this criteria unjustly deprives a person of the autonomy at the end of life based on their residency in Victoria and does not consider the natural movements of persons between states and territories, especially at the end of their life for compassionate purposes, such as to be close to relatives and loved ones who may be providing care.

Further, clause 7 introduces a right to review by the Voluntary Assisted Dying Board (the Board) in the case that an applicant does not comply with eligibility criteria on the basis that they are not an Australian citizen or permanent resident. These criteria have been shown to restrict a person’s access to legal healthcare at the end of their life based on race or nationality, thus contravening equality rights in section 8 of the Charter. There have been numerous instances of for example, people who are New Zealand citizens but are long-term residents of Australia, being denied access to voluntary assisted dying. An avenue for review through the Board provides a balanced remedy for this.

The Bill also removes the reliance on a time-based prognosis to death. Time-based prognoses within voluntary assisted dying schemes are clinically and legally problematic. Estimates of prognosis were never intended to be a legal test – rather, they are provided to patients to inform clinical care and allow patients to plan the remainder of their lives. Even experienced clinicians can have difficulty in providing certain timeframes to death, which are unpredictable and subject to change.

Given the strict time-based prognosis in the current provisions (death is expected in less than 6months, or 12months for those with neurodegenerative disease), and the inherent uncertainties associated with assessing this, it is likely that clinicians err on the side of caution and people are not gaining access to the scheme until very late in their disease. The Board has noted that this may explain why the data shows that many Victorians who start the voluntary assisted process die from their disease before they are able to access medication, thus denying these people autonomy in life.

By removing the time-based prognosis, and instead relying on clear and robust qualitative criteria, this Bill removes one of the contributors to delayed access to voluntary assisted dying. This is an approach that has also been adopted in the ACT, and is considered by many experts to adequately protect against the risk of inappropriately early application or use of voluntary assisted dying by those who should otherwise be ineligible.

Whilst some eligibility criteria have been amended or removed, the Bill balances the need to protect a person from coercion towards, or otherwise inappropriate use of, voluntary assisted dying by maintaining key eligibility criteria and assessment processes. These include that the disease must be advanced, incurable and likely to cause death, that the request and assessment progress remain multi-staged with oversight by more than one practitioner, and that oversight functions of the Voluntary Assisted Dying Review Board, Health Secretary and AHPRA, among others, remain in place. Fundamentally, the person seeking voluntary assisted dying must have capacity to provide consent, and provide that consent freely at all stages of the process.

Choice of administration permit

Clause 42 of the Bill sets out a new requirement, that the coordinating practitioner must consult with the person about their preferred method of administering the voluntary assisted dying substance before applying for an administration permit. Previously a person was required to self-administer the substance unless it was deemed that they were physically incapable of doing so at the time of application. The Bill proposes that a person can opt for practitioner administration, regardless of their physical capacity. The choice of how one will administer the substance, and then the act of administration itself, are some of the last choices that a person accessing assisted dying makes in their life. There have been many stories of this lack of choice causing significant distress for patients and families, including due to bureaucratic challenges and delays associated with changing the form of administration late in the process. It is of the utmost importance that at this final life stage, undue pain and suffering is reduced. Ultimately by introducing choice, the Bill ensures that autonomy is upheld for a person as they navigate life’s final stage.

Freedom to seek, receive and impart information (section 15(2)) and freedom of thought, conscience, religion and belief (section 14)

Section 15 of the Charter recognises that everyone has the right to freedom of expression, which includes the freedom to seek, receive and impart information and ideas. As previously discussed by the Scrutiny of Acts and Regulations Committee (SARC), these freedoms do not extend to non-political matters, however it is my belief that the existence of voluntary assisted dying as a legal component of the health system, one that was made through purely political (state legislative) systems, thereby deems it to be political in nature. The current restriction on health practitioners from initiating a discussion with a patient about assisted dying therefore contravenes the section 15(2) right, both of the practitioner to impart information and of the patient to receive it.

The current assisted dying scheme upholds section 14 of the charter, the right to freedom of thought, conscience and religious belief, but does so over the right to exchange lawful healthcare information. Where conscientious objection provisions exist across other aspects of legislated health services, it has been acknowledged that one’s right to object based on religion or conscience should not act to obstruct another’s right to access legitimate healthcare information. Patients should not bear the burden of managing the consequences of a practitioner’s religious beliefs. If freedom of choice and autonomy and the end of one’s life is to be upheld, we must strike the right balance in this regard.

Clause 5 of the Bill therefore removes the ability for a health service provider who holds a conscientious objection to refuse to provide information about voluntary assisted dying. Clause 10 then introduces a new requirement, that if a person makes a request for information about voluntary assisted dying the health service provider must provide the person with this information, including the details of the Care Navigator Service, within 2 days of the request. I believe this to be a timely and non-intrusive pathway for information provision.

Further, clause 10C of the Bill specifies that a health services provider cannot withdraw treatment from a person if they are of the belief that they have or are likely to enquire about or access assisted dying. A person’s right to healthcare must be protected, even if their belief, conscience or religion differs from the service provider. This is especially important where the person resides at a facility operated by the provider. This facility is akin to the person’s home, and the withdrawal of a service would have significant consequences for their quality of life. To support a person to receive care, including assessment and information, where they live, clause 10B(4) introduces that a health service provider must provide reasonable access to the required health professionals for this purpose. This does not require a service provider to particpate in the assessment or the administration process in any way, especially if they hold a conscientious objection.

Equality rights (section 8) and the best interests of children (s 17(2))

Section 8 provides that a person has the right to recognition as a person before the law. Furthermore, the Charter specifies that ‘every person has the right to enjoy his or her human rights without discrimination’. Discrimination may include prejudicial distinctions between people based on their age.

Eligibility criteria relating to age

The rights of children and young people to access healthcare without discrimination are inherent to section 8 of the Charter. While the capacity of a child to make decisions about their life are not universally accepted across Victorian law, the acknowledgment of children as mature minors in certain circumstances is an evolving field, especially in medical settings. In certain circumstances it may be deemed to contravene a child’s section 8 right if they are to be denied access to voluntary assisted dying despite meeting all other eligibility criteria and providing free and informed consent.

However, this is an emerging legal space and balanced consideration must be given to section 17(2) of the charter, that ‘every child has the right … to such protection as in the child’s best interest’. Therefore, the ability of children to access voluntary assisted dying is not directly addressed in this Bill. Instead, clause 73 requires that a legislative review of the Act is undertaken every three years, and that within this review there must be consideration of ‘whether a child has decision making capacity in relation to voluntary assisted dying’.

Second reading

Sarah MANSFIELD (Western Victoria) (10:01): I move:

That the bill be now read a second time.

Today I introduce a bill to amend Victoria’s voluntary assisted dying scheme to improve equity and access for all Victorians at the end of their life. At the outset, I want to extend enormous thanks to everyone who has assisted with the preparation of this bill, which has been based on extensive consultation and research for over a year. In particular, I would like to thank Dying with Dignity Victoria, Go Gentle, Dr Nick Carr and all the other practitioners and families who have shared their experiences and thoughts with us. I would also like to thank my staff, and in particular my policy adviser Georgia Lennon, who did an extraordinary job in what is an incredibly complex subject.

I remember the time when it became crystal clear to me that we needed legal voluntary assisted dying. A patient I was looking after – we’ll call them ‘Grace’ – was an elderly woman who had an incurable condition that affected her ability to make new blood cells. We had kept her condition at bay for a couple of years with regular blood transfusions, but she was needing them more and more often, up to every few weeks. Grace experienced a number of complications from such frequent hospital visits and found the process exhausting.

One day, Grace told me she wanted to stop the transfusions – she had had enough.

We had a long discussion about what that would mean. She was going to experience a gradual drop in her red blood cell count, and she would likely experience a range of unpleasant symptoms as different organs struggled with a lack of sufficient oxygen-carrying blood cells – like breathlessness, weakness, swelling, chest pain, and confusion. It would eventually lead to her death. But it was difficult for anyone to predict how long this would take.

We also knew that treating these symptoms was going to be really challenging, but we would do our absolute best to keep her comfortable.

Grace remained resolute in her decision to stop the transfusions, but she was finding it very difficult to cope with the symptoms. Even with the best palliative care, she suffered immensely. Treatments to deal with one symptom invariably caused others that were equally – or often more – unpleasant, and so she often refused them. Her condition and her other symptoms – like breathlessness and nausea – made her extraordinarily anxious, which was only heightened by the uncertainty of how long all of this would go on for. She described to me that she had a constant and tremendous sense of unease.

Grace and her family repeatedly asked if there was any possible way we could end her suffering sooner, and the answer was no. Voluntary assisted dying was not yet legal in Victoria. Despite our best efforts to provide Grace with comfort and dignity, the reality was months of relentless distress for her and her family before she eventually died. The experience still haunts me – not so much because of Grace’s suffering in itself, but because she so clearly wanted more choice and control over her death, but didn’t have any legal option.

When VAD laws passed in 2017, it was a monumental occasion for Victoria and showed tremendous leadership.

I often reflect on Grace, and how access to VAD might have allowed her and her family to avoid so much distress and provide her with some control and dignity at the end of her life.

But over five years on from VAD becoming a legal option in Victoria, I also wonder whether she would have actually been able to access it.

Our VAD laws, being the first in the country, were understandably quite conservative. But many of the so-called ‘safeguards’ have turned out to significantly restrict access to those the laws were meant to assist, adding to distress for patients and their families, and not necessarily improving safety.

I wonder if I would have been able to let Grace know that VAD was an option. Under our laws, doctors are prohibited from raising the subject of voluntary assisted dying. This creates murky areas whereby someone – as Grace did – may ask in a general sense for their suffering to end sooner, but what if they haven’t specifically asked about voluntary assisted dying? Others might be too afraid to ask about it at all, or not even know about it. No other jurisdiction apart from South Australia has this so-called ‘gag’ clause, and it is broadly recognised that this has only served to restrict access by denying people information about a legal form of health care, preventing truly informed decision-making.

I also wonder if Grace would have been able to get through the assessment in time. Being in a regional area, we would have struggled to access the mandatory specialist review – local access to specialists willing and able to participate in VAD is limited even in metro areas, and it is illegal under federal laws to have a telehealth assessment for VAD. Travelling would have been highly distressing and practically difficult for her. By the time we got through the assessments and bureaucratic hoops she may have been too confused to give free consent. I have heard heartbreaking stories from people – especially in rural Victoria – where the rigid requirements regarding practitioner types has effectively denied them access to VAD.

Would Grace’s care facility have allowed her to access VAD on their premises? It was her home, but we know that many institutions – religious or otherwise – don’t allow it. I’ve even heard reports of some institutions preventing people from making any phone calls in case they are trying to organise VAD for themselves.

Would she have been eligible given her uncertain prognosis? Probably, although it’s difficult to know for sure. Allowing only those who have a prognosis of less than six months to access VAD means many people die of their disease before they get through the process – and Victorian data bears this out. Estimating prognosis is notoriously imprecise even for experts, and no one wants to risk breaking the law, so to be certain that someone has less than six months to live, practitioners are likely to wait until it is very clear that death is close. Estimates of life expectancy are meant for helping clinicians plan treatment, and people to plan the rest of their lives, not as legal tests.

These are just some of the problems that have become apparent over the years with Victoria’s VAD laws. They have been repeatedly highlighted by the VAD review board in their annual reports, by clinicians involved in VAD, advocacy groups, and importantly, by patients and their families who have navigated – or tried to navigate – the system. All other Australian jurisdictions apart from the Northern Territory now have their own laws in place, and they’ve learned from the Victorian experience. We are now the national laggard when it comes to access and equity.

Now, we have the long-awaited five-year review into the laws, which clearly spells out a range of legislative changes required.

Which is why the Greens are tabling this bill today. We understand that the government recently committed to improving the laws, something we truly welcome. As stated, our bill draws on extensive consultation and research, and we would urge the government to support our proposed changes.

Firstly, the bill makes a number of changes to the scheme’s eligibility criteria.

It removes the requirement that a person must have been a Victorian resident for at least 12 months prior to application. Australian citizenship and permanent residency requirements are maintained but an explicit avenue for review is established through application to the Voluntary Assisted Dying Review Board. The board will be able to determine if there are special circumstances warranting an exemption, for example, for New Zealand citizens who are long-term residents in Australia.

Further, the bill removes the requirement for a time-based prognosis to death, whilst maintaining qualitative prognosis criteria: that a person’s condition must be incurable, advanced, progressive, expected to cause death and causing intolerable suffering. This not only brings Victoria into line with VAD legislation in the ACT, it is clinically and legally more sound.

Secondly, the bill removes the ‘gag clause’. Registered health practitioners, social workers and counsellors will have the ability to raise voluntary assisted dying within the context of providing relevant clinical care for a person. The practitioner must be satisfied that the person understands the treatment options available and likely outcomes of treatments, including palliative care options.

Thirdly, the bill makes important changes to the voluntary assisted dying workforce, including enabling nurse practitioners to act as co-ordinating or consulting practitioners and amending the minimum requirements of health practitioners to improve accessibility to consultations, especially in regional and rural Victoria.

Fourthly, whilst the bill upholds a practitioner’s right to refuse to participate in voluntary assisted dying on the basis of a conscientious objection, such practitioners will now have an obligation to provide information about voluntary assisted dying on the request of a person, including the details of the Care Navigator Service. This brings VAD in line with most other jurisdictions, and mirrors similar provisions outlined in the Abortion Law Reform Act 2008. Further, the bill specifies that healthcare services that hold an objection must not withdraw a service from a person on the basis that they believe that they have made or are likely to make an application for VAD.

And finally, on the request of a person, health service providers must allow reasonable access to a health practitioner, witness or nominated person for the purpose of accessing voluntary assisted dying. This provision does not require that an employee at that service who holds a conscientious objection to take part in the provision of voluntary assisted dying, but ensures that in settings where providers are limited – for example, in some parts of rural Victoria where the majority of aged care providers are denominational – a person is not impeded from their right to choose assisted dying.

Fifth, the bill makes amendments to remove the default assumption that a person must self-administer the voluntary assisted dying substance unless physically incapable of doing so. Instead, in collaboration with their coordinating practitioner, a patient will have a choice between self-administration and administration by their coordinating practitioner. The current laws, which have self-administration as the default option, with no option to change this quickly or easily, have led to highly distressing situations for some patients and their families at the time of administration.

The bill then makes a number of minor amendments to the functions of the review board, decreases the time that must elapse between the first and final requests and establishes a number of record-keeping requirements for practitioners.

Finally, the bill establishes a mandatory, ongoing legislative review every three years – something missing from the original act. It also proposes that the review must consider several emerging themes within the assisted dying space that have been explored in international jurisdictions but require further consideration in our own context. These include challenging areas, like accessing VAD in the event someone loses capacity to consent, or access for those under 18 who demonstrate the ability to make informed decisions.

We know that this is an issue where clinical and legal practice, as well as social understanding, will continue to evolve. We will continue to learn from the experiences of other jurisdictions. We know that this may not always be something the government of the day wishes to prioritise. So building in a requirement for periodic legislative reviews is important to ensure that we don’t again end up in the position we are in today.

I hope that all members of this Parliament will consider supporting this bill, which in addressing inequitable and unnecessary barriers to access to voluntary assisted dying, would once again see Victoria leading the way. And it would ensure that people like Grace could be afforded choice and dignity at the end of their lives.

Lee TARLAMIS (South-Eastern Metropolitan) (10:13): I move:

That debate on this bill be adjourned for two weeks.

Motion agreed to and debate adjourned for two weeks.