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Voluntary Assisted Dying Bill 2017
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21 September 2017
Second reading
JILL HENNESSY (ALP)
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Ms HENNESSY (Minister for Health) — I move:
That this bill be now read a second time.
Far too many Victorians have suffered too much and for too long at the end of their lives.
Talking about death is a challenging and confronting issue. For too long end-of-life issues have been in the too hard basket. This needs to change. Improving policy and community awareness about the end of life, and death, are essential if we are to improve Victorians' choices about how and where they experience both.
Encouragingly, in recent years, Victoria has been leading the way on end-of-life issues — talking about them, and putting in place reforms for improved choices and better services.
In consulting the community about these reforms, the evidence is clear that we have not been providing enough Victorians with the genuine choices they need, in line with their preferences, to have a good end of life and death.
For a small number of people at the end of their life, having a personal choice may mean having control over the timing and manner of their impending death to alleviate suffering they can no longer tolerate. The Voluntary Assisted Dying Bill 2017 balances a compassionate outcome for these people at the end of their lives who are suffering, and providing community protection through the establishment of robust safeguards and comprehensive oversight.
The Legislative Council's Standing Committee on Legal and Social Issues undertook a comprehensive inquiry into end-of-life choices. The committee received a great deal of evidence about the pain and suffering being experienced in the community today. It heard harrowing stories of many Victorians taking their own lives in painful, lonely and unacceptable ways. Evidence from the coroner indicated that one terminally ill Victorian was taking their life each week. This evidence resulted in one of the key recommendations of the parliamentary committee report, which was that Victoria should legalise voluntary assisted dying.
The parliamentary committee identified appropriate restrictions for the introduction of voluntary assisted dying in Victoria. This choice of voluntary assisted dying should only be implemented within the context of existing care options available to people at the end of their life. Voluntary assisted dying is not a substitute for palliative care, and will not preclude access to the high standards of palliative care enjoyed by Victorians.
I appointed a ministerial advisory panel to develop the detail of a voluntary assisted dying framework for Victoria and to ensure that it would be a safe, compassionate and workable one. The ministerial advisory panel has combined its considerable expertise with extensive consultation with stakeholders across Victoria to ensure legislation could be effectively and safely implemented. I commend the ministerial advisory panel for their considered recommendations and their comprehensive report. The Voluntary Assisted Dying Bill will give effect to the ministerial advisory panel's recommendations for a safe and compassionate legislative framework.
Making a decision about the timing and manner of one's death may be an immensely personal and private decision or it may be a decision that is openly shared and discussed with family, friends and community. What is important is that the decision is the person's own decision, based on their own values and beliefs. This bill recognises that some people may prefer to choose to hasten their impending death, rather than continue to endure suffering that has become intolerable to them. The bill only allows the person themselves to make the decision to access voluntary assisted dying, and there are strong safeguards in place to ensure the decision is the person's own, and that it is voluntary, informed and enduring.
The bill will provide a small number of people in very limited circumstances an additional choice about the timing and manner of their death. For many more people, just knowing this option is available if they are confronted with such circumstances will provide them with comfort. Some may choose to access voluntary assisted dying but ultimately not administer the substance because they feel a greater sense of control. The vast majority of Victorians will never want or choose to access voluntary assisted dying.
It is important to recognise that most people at the end of their life will be cared for by our excellent palliative care services. In 2016–17 across Victoria 17 000 people and their families and carers were supported in their homes by specialist palliative care. Palliative care in Victoria is first class and palliative care services in Australia have been assessed as one of the world's best over many years.
But we know that for some people at the end of their life palliative care cannot ease their pain and suffering. This bill focuses on providing genuine choice to this small number of people who are at the end of their life and who are suffering with no hope of recovery or relief.
Voluntary assisted dying should never be seen as an inevitable extension of palliative care. But I also believe that voluntary assisted dying and palliative care are not mutually exclusive options. The experience in North America shows that between 80 per cent to 90 per cent of people who access voluntary assisted dying are supported by palliative care. While palliative care practitioners will be able to conscientiously object to providing voluntary assisted dying, I am confident that palliative care services will continue to provide expert palliative care and support based on the needs of the person, not on the personal choices they may make about their end of life.
Palliative care responds to the needs of people and their families facing problems associated with life-threatening illnesses, regardless of how close a person is to death. Victoria's end-of-life and palliative care framework commits government to strengthening the palliative care sector and ensuring that all providers across health, community and social care sectors take responsibility for delivering high-quality end-of-life care.
Victorians are already provided with high-quality palliative care. Significant additional funding has been provided in recent years, and the government is committed to further investing in and improving palliative care services. Voluntary assisted dying is not an alternative to palliative care and, if the bill is passed, every Victorian will remain entitled to high-quality palliative care. The request and assessment process in the bill, which clearly requires medical practitioners to discuss palliative care options, will also ensure that people will never turn to voluntary assisted dying because they have not been provided with other options, including palliative care.
The bill recognises that people are entitled to have different values and beliefs and that these should never be imposed on others. Just as it will be a matter for an eligible person whether or not they access voluntary assisted dying, health practitioners will also be able to determine the extent of their involvement in voluntary assisted dying. Given the small number of people who will be eligible, the bill will not affect the practice of most health practitioners. In the limited circumstances where it does, a health practitioner may choose to conscientiously object to participating in any part of the process. While some organisations may opt not to provide voluntary assisted dying, it is expected that they will continue to support all of their patients by providing access to high-quality healthcare services.
This bill is uniquely Victorian and has been developed recognising the diversity of Victorians. This includes Victorians who live in regional and rural areas, those from different cultural backgrounds, and those who use different forms of communication. In recognising our strong Victorian values, the bill also includes a set of principles that establish a sound framework for its operation. These principles recognise the value of every human life, respect for autonomy and a person's preferences, choices and values, and the provision of high-quality care. In keeping with these principles, the therapeutic relationship should be supported and the role of the person's family, friends and carers acknowledged.
The bill sets out when a person may access voluntary assisted dying. The decision to access voluntary assisted dying must always be made by the person themselves. The framework established by the bill will ensure that only those making voluntary, informed and enduring decisions will be able to request and access voluntary assisted dying.
Criteria for access to voluntary assisted dying
The Voluntary Assisted Dying Bill sets out clear parameters that will only allow people to access voluntary assisted dying in very limited circumstances. Health practitioners must not initiate a discussion about voluntary assisted dying or suggest voluntary assisted dying to a patient when they are providing them with a health service or professional care service. This includes providing people with written materials if the person has not initiated a discussion or requested information. This will ensure health practitioners do not pressure or inadvertently encourage a person to access voluntary assisted dying.
In order to be eligible to access voluntary assisted dying, a person will need to be an adult, an Australian citizen or permanent resident who is ordinarily resident in Victoria and they must have decision-making capacity in relation to voluntary assisted dying. The person must also be diagnosed with an incurable disease, illness or medical condition that is advanced, progressive and will cause death. The disease, illness or medical condition must be expected to cause death within weeks or months, not exceeding 12 months. The defined 12-month limit provides clarity for medical practitioners and the community and is consistent with Victorian practice in defining the end of life. The disease, illness or medical condition must also be causing suffering that cannot be relieved in a manner the person considers tolerable. The extent to which the person's suffering may be relieved or is tolerable will always be a matter for the person to determine themselves. This is because suffering is subjective and cannot be assessed by others. All of the criteria must be met for a person to be eligible.
For the avoidance of doubt, the bill explicitly provides that mental illness only will not meet the eligibility criteria. Similarly, disability only will not satisfy the eligibility criteria. While disability may be caused by, or be a symptom of, a disease, illness or medical condition, disability itself will not constitute a disease, illness or medical condition. For example, a person with motor neurone disease may have a range of disabilities that are a result of their disease. These disabilities are not the reason the person may be eligible. The motor neurone disease, which is a disease that will cause death, is what would make the person eligible.
If a person with mental illness or disability satisfies all of the eligibility criteria because of another disease, illness or medical condition, they may be eligible for voluntary assisted dying. This recognises that people with mental illness or disability should not be discriminated against and if they fulfil all of the other eligibility criteria, they should not be excluded just because of their mental illness or disability.
The bill clearly sets out that a person must have decision-making capacity in relation to voluntary assisted dying and that they must make their request personally. A person will not be able to request voluntary assisted dying in an advance care directive, and if this request is made it will be invalid. Likewise, no-one else will be able to make a request on behalf of someone else — not a medical treatment decision-maker, or a family member or carer. The eligibility criteria will prevent many people who want to access voluntary assisted dying from doing so. This includes those who may want to make the request in advance of losing decision-making capacity, and those who have dementia. This is because having decision-making capacity throughout the entire process is an important safeguard in ensuring that a person's decision is voluntary, informed and enduring.
To support the diversity of Victorians, the bill also allows for the person to receive the assistance of an accredited independent interpreter in accessing voluntary assisted dying.
Request and assessment process
The bill sets out a clear and rigorous request and assessment process to provide clarity about the obligations for health practitioners who choose to be involved. The process also incorporates strong safeguards at each step to protect those who may be vulnerable to abuse.
The bill recognises that a request for information about voluntary assisted dying should not commence the request and assessment process. A person is likely to approach a health practitioner they know and trust to seek information about voluntary assisted dying and this discussion should occur as part of a broader discussion about the person's goals, care needs and treatment options. In this way existing therapeutic relationships are supported and the person is able to consider the information without feeling pressured to continue.
A person must make a clear and unambiguous request to a medical practitioner to access voluntary assisted dying. A person may withdraw from the process at any time. If a person decides not to continue, they may subsequently decide they want to request voluntary assisted dying but they will need to commence the request and assessment process from the beginning again.
Upon receiving a request, a medical practitioner must determine and inform the person whether they will accept or refuse the request within seven days. The medical practitioner may conscientiously object to participating or may choose not to accept the role because they do not meet the minimum requirements or would not be able to perform the duties. A medical practitioner must inform the person why they are not accepting the role of coordinating medical practitioner as it is important for the person to know the reason for that choice.
The coordinating medical practitioner must conduct a first assessment and determine whether the person meets all of the eligibility criteria. If the coordinating medical practitioner assesses that the person does not meet any one of the eligibility criteria the request and assessment process will end. If the coordinating medical practitioner assesses the person as eligible, they must refer the person to another medical practitioner for a further independent assessment. If this practitioner accepts the referral, they will become the consulting medical practitioner. The consulting medical practitioner undertakes their own independent assessment of the person's eligibility. If either practitioner is unable to determine whether the person has decision-making capacity, or whether the person's disease, illness or medical condition meets the eligibility criteria, they must refer the person to an appropriate specialist practitioner.
Both the coordinating and consulting medical practitioners must be fellows of a specialist medical college. This means both medical practitioners will have considerable training and experience. Prior to the first time they conduct an assessment, both the coordinating medical practitioner and the consulting medical practitioner must have completed training approved by the Secretary of the Department of Health and Human Services. The training will ensure that the participating medical practitioners understand their obligations under the bill and receive further training in making assessments about decision-making capacity, including training in identifying and assessing the risk factors associated with abuse or coercion. In addition, the bill requires that either the coordinating or consulting medical practitioner must have at least five years of experience post-fellowship and that one of the practitioners must have relevant expertise and experience in the person's disease, illness or medical condition.
Both the coordinating and consulting medical practitioners will be required to fully inform the person about all of the available treatment and palliative care options. This will ensure the person is able to make a properly informed decision. Both practitioners must be satisfied that the person understands the information, that they are acting voluntarily and without coercion, and that their request is enduring. Both practitioners must notify the Voluntary Assisted Dying Review Board of the outcome of their assessment.
If the consulting medical practitioner assesses the person as ineligible, they may not access voluntary assisted dying. If the person and their coordinating medical practitioner decide they would like another opinion, they may undertake the consulting assessment process again with another consulting medical practitioner. It is standard medical practice to seek a second opinion and there is no reason to prevent this in voluntary assisted dying as it supports patient choice. The Voluntary Assisted Dying Review Board will review each assessment and will identify any instances of 'doctor shopping' and potential inconsistencies in assessments.
If the consulting medical practitioner assesses the person as eligible, the person will make a written declaration. The written declaration will be a formal record of the voluntary and enduring nature of the person's request to access voluntary assisted dying. The written declaration will need to be witnessed by two people who are not involved in providing health services or professional care services to the person and who would not materially benefit from the person's death. The written declaration must be signed in the presence of the coordinating medical practitioner.
Once a person has completed their written declaration, they may make their final request. The final request may only be made after a period of at least 10 days has passed since the first request. This will ensure that the person has had sufficient time to consider their decision. The only exception to this requirement is if the coordinating medical practitioner is of the view that the person will die within 10 days of making their first request. If this assessment is consistent with the prognosis of the consulting medical practitioner, the requirement may be waived. In all instances, a final request cannot be made on the same day that the second assessment is completed.
As an additional safeguard to monitor the voluntary assisted dying substance, the person must also appoint a contact person. The contact person will be responsible for returning the voluntary assisted dying substance if it is not used and will also be a point of contact for the Voluntary Assisted Dying Review Board.
Following the final request, the coordinating medical practitioner must undertake a final review to complete the process and provide copies of all forms and assessments to the board. This process does not require the coordinating medical practitioner to conduct any further assessments of the person; instead they must check that each procedural step has occurred.
If the request and assessment process has been complied with, the medical practitioner may apply to the secretary of the Department of Health and Human Services for a permit. There are two forms of permit: a self-administration permit and a medical practitioner administration permit. The secretary may issue a permit if they are satisfied that the process has been complied with. The permit will only authorise administration through the method specified.
If the person is physically able to self-administer the voluntary assisted dying substance, the coordinating medical practitioner must apply for a self-administration permit. Once the coordinating medical practitioner has obtained a self-administration permit they may prescribe the voluntary assisted dying substance. When presented with an authorised prescription, a pharmacist may dispense the voluntary assisted dying substance and will report this to the Voluntary Assisted Dying Review Board. The pharmacist must label the voluntary assisted dying substance and must provide information about the substance and their obligations to safely store it. The person must store the voluntary assisted dying substance in a locked box. The person will be free to self-administer the substance at a time of their choosing.
In the rare circumstances where the person is not physically able to self-administer or digest the voluntary assisted dying substance, the coordinating medical practitioner may apply for a practitioner administration permit. This provision has been included to ensure that the bill does not discriminate against those who are not physically able to self-administer and includes additional safeguards. It is the responsibility of the coordinating medical practitioner to determine whether the person is physically able to self-administer or digest the voluntary assisted dying substance. Only the coordinating medical practitioner may apply for a practitioner administration permit and provide the medication in accordance with this.
If the coordinating medical practitioner obtains a self-administration permit and the person subsequently loses the physical capacity to self-administer or digest the voluntary assisted dying substance, the coordinating medical practitioner will need to apply for a practitioner administration permit. Before applying for this permit, the coordinating medical practitioner will need to be satisfied that any previously prescribed substance or prescription has been returned. If a person loses the physical capability to self-administer or digest the substance, they will need to return to their coordinating medical practitioner if they want to proceed, because no other person is authorised to administer the voluntary assisted dying substance.
If the coordinating medical practitioner has obtained a practitioner administration permit, the person may request that the coordinating medical practitioner administer the voluntary assisted dying substance. The person must determine when this occurs. As a further safeguard the coordinating medical practitioner may only administer the voluntary assisted dying substance in the presence of a witness who is independent of the coordinating medical practitioner. The coordinating medical practitioner and the witness must certify that the person appeared to have decision-making capacity in relation to voluntary assisted dying and that they were acting voluntarily.
To ensure all deaths under the legislation are identified, after a person has died the medical practitioner who notifies the registrar of births, deaths and marriages of the person's death must notify if they are aware the person has been prescribed the voluntary assisted dying substance or if the person has self-administered or been administered the voluntary assisted dying substance. This information is provided to the Voluntary Assisted Dying Review Board.
Any unused voluntary assisted dying substance that has not been self-administered by the person must be returned to the pharmacist by the contact person within one month of the notification of the person's death. The pharmacist will report the return of the substance to the Voluntary Assisted Dying Review Board. These measures will support the safe monitoring of the voluntary assisted dying substance in the community and ensure clear accountability for the return of any unused voluntary assisted dying substances.
Protections and offences
The bill provides protection from both criminal and civil liability to those who act in accordance with the bill. There are specific immunities for medical practitioners undertaking roles in accordance with the bill, as well as other health practitioners including pharmacists and people who provide assistance to those accessing voluntary assisted dying.
The bill includes a number of specific offences that relate to the voluntary assisted dying framework. These offences address particular risks that may arise as a result of the legislation, such as the misuse of a voluntary assisted dying substance. Existing criminal offences will continue to apply to those acting outside the legislation, for example to those who misuse medications that are not prescribed in accordance with the legislation.
The bill creates an offence for a coordinating medical practitioner to knowingly administer a voluntary assisted dying substance other than in accordance with a practitioner administration permit if they intend to cause death. This offence will require the coordinating medical practitioner to act in accordance with the requirements of the permit and ensure, for example, that the person has decision-making capacity and is acting voluntarily.
There is also an offence for anyone other than the person themselves to knowingly administer a voluntary assisted dying substance dispensed under a self-administration permit. These new offences provide a clear deterrent and ensure that there are strong penalties for anyone who intentionally misuses medications prescribed under the bill.
The bill also creates offences of inducing another person to request voluntary assisted dying or to self-administer a voluntary assisted dying substance. A decision to access voluntary assisted dying must always be the person's own decision, and any undue influence or dishonesty to induce a person will be criminal.
The bill also creates offences to falsify forms or records or to make false statements or reports that are required under the bill. These offences will ensure accurate records are available for review by the Voluntary Assisted Dying Review Board. It will also be an offence to fail to provide forms to the board within seven days of completing the form.
Voluntary Assisted Dying Review Board
The bill will establish the Voluntary Assisted Dying Review Board. The board will be responsible for monitoring voluntary assisted dying activity under the legislation. This will include receiving reporting forms and reviewing each request and assessment to access voluntary assisted dying. The coordinating medical practitioner, the consulting medical practitioner, the dispensing pharmacist, the Department of Health and Human Services and the registrar of births, deaths and marriages will all provide separate information to the board at several points throughout the process. Receiving reports from these five independent sources will support the board in its comprehensive oversight of the operation of the bill. The board will also use this information to improve the quality of the voluntary assisted dying experience and practice.
The board will ensure transparency through annual reporting to Parliament, and six-monthly reporting to Parliament in the first two years. This will allow the public to be fully informed about the number of people accessing voluntary assisted dying and the reasons for access.
If the board identifies wrongdoing, or potential wrongdoing, it will be required to refer the matter to the relevant body. This may be the Chief Commissioner of Police, the secretary, the State Coroner, or the Australian Health Practitioner Regulation Agency.
Consequential amendments
The bill recognises that only people who are already dying may access voluntary assisted dying, and as such, their death should not be treated as unexpected or avoidable. For this reason, a voluntary assisted dying death will not be a 'reportable death' under the Coroners Act 2008. This will not preclude the coroner from investigating a death, but this will not be an automatic requirement.
As people may only access voluntary assisted dying if they are suffering from a disease, illness or medical condition that will cause death, this disease, illness or medical condition should be recorded as their cause of death. The Births, Deaths and Marriages Act 1996 will be amended to require that the disease, illness or medical condition be recorded as the cause of death in the register. That act will also be amended to require the registrar of births, deaths and marriages to notify the board that the person was prescribed, self-administered, or administered the voluntary assisted dying substance.
The bill amends the Drugs, Poisons and Controlled Substances Act 1981 to recognise the bill and the legal use of drugs in accordance with the bill.
The bill also amends the Health Records Act 2001 to recognise that voluntary assisted dying activity under the bill will be a health service, for the purposes of the Health Records Act. This will ensure that the health privacy principles apply to information collected when health practitioners perform activities under the bill.
The bill amends the Medical Treatment Planning and Decisions Act 2016 to make it clear that a person may not make a statement in an advance care directive about voluntary assisted dying. For the avoidance of doubt, it also provides that a medical treatment decision-maker cannot make a decision about voluntary assisted dying.
The bill amends the Pharmacy Regulation Act 2010 to recognise the bill and to authorise disclosure in accordance with the bill.
The commencement of the bill will allow for an extended implementation period to provide adequate time for planning and establishment of the necessary reporting, practical and clinical practices to support the operation of a voluntary assisted dying framework.
This bill establishes a safe and compassionate framework to give Victorians who are suffering the ability to choose the timing and manner of their death. The bill provides a rigorous process with safeguards embedded at every step to ensure that only those who meet the eligibility criteria and who are making an informed, voluntary and enduring decision will be able to access voluntary assisted dying. The clear and considered details reflected in this bill will provide the Victorian community with the confidence that voluntary assisted dying can be safely provided to give Victorians genuine choice at the end of their lives.
I commend the bill to the house.
Debate adjourned on motion of Mr CLARK (Box Hill).
Debate adjourned until Tuesday, 17 October.