29 July 2017

Euthanasia

The report by the Victorian Voluntary Assisted Dying Ministerial Advisory Panel released last week follows public consultation regarding the Panel's January 2017 Voluntary Assisted Dying Bill Discussion Paper and the Legislative Council’s Legal and Social Issues Committee Inquiry into End of Life Choices.

The Parliamentary Committee provided a broad policy direction for voluntary assisted dying that focused on allowing a person to self-administer a lethal dose of medication, with  49 recommendations centred on palliative care and advance care planning. The Panel's role  was to consider how this could work in practice and to ensure only those making voluntary and informed decisions and at the end of their life could access voluntary assisted dying.

The report states that
 The Panel supports the recommended improvements for palliative care and advance care planning, noting that the reforms will ensure people have genuine choice at the end of their life. While the Panel is of the view that voluntary assisted dying implementation should be considered in the context of existing care options available to people at the end of life, detailed consideration of the other 48 recommendations made by the Parliamentary Committee is beyond the Panel’s terms of reference. ....
In formulating its recommendations, the Panel relied on a number of guiding principles. These principles are that:
• Every human life has equal value.
• A person’s autonomy should be respected.
• A person has the right to be supported in making informed decisions about their medical treatment and should be given, in a manner that they understand, information about medical treatment options, including comfort and palliative care.
• Every person approaching the end of life should have access to quality care to minimise their suffering and maximise their quality of life.
• The therapeutic relationship between a person and their health practitioner should, wherever possible, be supported and maintained.
• Open discussions about death and dying and peoples’ preferences and values should be encouraged and promoted.
• Conversations about treatment and care preferences between the health practitioner, a person and their family, carers and community should be supported.
• Providing people with genuine choice must be balanced with the need to safeguard people who might be subject to abuse.
• All people, including health practitioners, have the right to be shown respect for their culture, beliefs, values and personal characteristics.
The Panel recognises the need to balance respect for autonomy with safeguarding individuals and communities in relation to voluntary assisted dying. The Panel is of the view that the eligibility criteria, the process to access voluntary assisted dying, and the oversight measures recommended appropriately balance these aims.
The Panel indicates that
The report explains the detailed considerations of the Panel. The voluntary assisted dying recommendation set out by the Parliamentary Committee is the starting point for each of the discussions. The Panel considers the consultation feedback, and reviews the research, the evidence and the experience of other jurisdictions where this is relevant. The Panel provides recommendations for the development of safe and compassionate voluntary assisted dying legislation that can be applied and understood by people and health practitioners in a range of clinical settings.
Part A provides details on the Panel’s recommendations in relation to the eligibility criteria, focusing on the person, the disease, and the circumstances in which a person may be eligible for voluntary assisted dying.
Part B sets out the request and assessment process from the perspective of the person making a request, as well as a medical practitioner’s perspective, and describes the requirements and steps the person must go through to access voluntary assisted dying.
Part C sets out the oversight and governance arrangements that provide protections to keep the community safe, including the establishment of a Voluntary Assisted Dying Review Board, reporting requirements, and new offences related to voluntary assisted dying. This part also sets out the reporting obligations of health practitioners to the Voluntary Assisted Dying Review Board, and the Board’s obligations for public reporting.
Part D considers the implementation of voluntary assisted dying within the context of existing care options and sets out recommendations to ensure the implementation of voluntary assisted dying is resourced appropriately, including the development of workforce support, information and guidance materials.
The final report also includes case studies to illustrate how the recommended framework will work in practice. The central case studies focus on people suffering from cancer and motor neurone disease because the experience in international jurisdictions suggests that it will predominantly be people with these conditions requesting voluntary assisted dying.
A summary of the framework is presented in Appendix 1. Appendix 2 describes how Victoria’s Charter of Human Rights and Responsibilities informed the Panel’s deliberations. Appendix 3 compares the 68 safeguards embedded in the proposed voluntary assisted dying framework with other international voluntary assisted dying legislation.
 In discussing elegibility criteria the report executive summary states
Part A sets out the Panel’s recommendations on the eligibility criteria for voluntary assisted dying.
The eligibility criteria recommended by the Panel follows the eligibility criteria proposed by the Parliamentary Committee. The Panel has refined the criteria and language to ensure it provides certainty and clarity to the community and health practitioners in Victoria about the circumstances in which a person can request voluntary assisted dying. The eligibility criteria limit voluntary assisted dying to adults who are suffering at the end of their life.
The Panel recommends that to access voluntary assisted dying a person must meet all of the following eligibility criteria:
• be an adult, 18 years and over; and
• be ordinarily resident in Victoria and an Australian citizen or permanent resident; and
• have decision-making capacity in relation to voluntary assisted dying; and
• be diagnosed with an incurable disease, illness or medical condition, that: – is advanced, progressive and will cause death; and – is expected to cause death within weeks or months, but not longer than 12 months; and – is causing suffering that cannot be relieved in a manner the person deems tolerable.
The recommended eligibility criteria ensure voluntary assisted dying will allow a small number of people, at the end of their lives, to choose the timing and manner of their death. There is no intention to give people who are not dying access, and the legislation will not give these people an option to choose between living and dying. The eligibility criteria ensure the voluntary assisted dying framework provides a compassionate response to people who are close to death and choose to request voluntary assisted dying to give them greater control over the timing and manner of their death. The Panel recommends that a person must have decision-making capacity throughout the voluntary assisted dying process. This requirement is fundamental to ensuring a person’s decision to access voluntary assisted dying is their own, is voluntary, and is not the product of undue influence or coercion. The Panel recognises that this will mean some people who may want to request voluntary assisted dying will be excluded. People with dementia who do not have decision-making capacity, for example, will not be able to access voluntary assisted dying. People will also not be able to request voluntary assisted dying in an advance care directive. This may disappoint many people in the community, but the Panel is of the view that having decision-making capacity throughout the voluntary assisted dying process is a fundamental safeguard.
The Parliamentary Committee recommended that only those at the end of life, in the final weeks or months, be eligible to access voluntary assisted dying. The Panel supports this restriction, and recommends a more defined limit. During consultations it was clear that the period of time included in ‘final weeks or months’ could be interpreted very differently. The Panel recommends that only those whose disease, illness or condition is expected to cause death within no longer than 12 months be eligible for voluntary assisted dying. This will ensure clarity and is consistent with Victorian practice in defining the end of life.
Consistent with the Parliamentary Committee recommendation, the Panel also recommends that mental illness alone should not satisfy the eligibility criteria. The Panel makes an additional recommendation that disability alone should not satisfy the eligibility criteria. This is because the voluntary assisted dying framework is for people who are suffering at the end of their life. The Panel does, however, recognise that if a person fulfils all the eligibility criteria, the fact that they have a mental illness or a disability should not exclude them from accessing voluntary assisted dying. The refined eligibility criteria remain consistent with those proposed by the Parliamentary Committee. Access is limited to people with an incurable disease, illness or medical condition who are in their final weeks or months of life. The objective clinical assessment of the diagnosis and prognosis has been retained. Like the Parliamentary Committee, the Panel is of the view that suffering should always be judged by the person themselves. The Panel has taken into account the research that suffering has psychological, social and spiritual aspects as well as physical symptoms such as pain, breathlessness and nausea, and that loss of autonomy or control can also contribute to a person’s suffering. The Panel recognises that perceptions and judgements about suffering are inherently individual and subjective.
The Panel is of the view that clear and precise eligibility criteria set out in legislation will prevent any expansion of voluntary assisted dying or any unintended ‘scope creep’. The eligibility criteria recommended by the Panel ensure voluntary assisted dying is only available to those who are already at the end of their life and are suffering. With such robust and limited eligibility criteria, the only way to expand the scope of voluntary assisted dying in the future would be to pass new legislation.
The Panel emphasises that all of the eligibility criteria must be taken together, and that none of the criteria in isolation is sufficient for a person to be eligible to access voluntary assisted dying.
In terms of the request and assistance process
Part B sets out the request and assessment process from the perspective of the person making a request, as well as a medical practitioner’s perspective, and describes the requirements and steps the person must go through to access voluntary assisted dying. Part B describes:
• initiating a request;
• receiving a request;
• making a request; and
• completing the voluntary assisted dying process.
The Panel recommends a prescriptive process that will ensure requests are voluntary, well-considered and enduring, and that only those who meet all of the eligibility criteria will be able to access voluntary assisted dying.
The Panel is also aware that voluntary assisted dying legislation will need to clearly step out the request and assessment process in order to provide health practitioners with clarity about their obligations and ensure it is applicable in a range of clinical settings. The process recommended by the Panel provides a balance between allowing people to make autonomous decisions and recognising that safeguards are required to ensure these decisions are voluntary and properly informed. The process requires the person to make three separate requests for voluntary assisted dying and undergo two independent medical assessments to ensure the eligibility criteria are met and the person is properly informed about their options. There are a number of steps in the process to identify any coercion or undue influence.
The Panel is of the view that a person should be able to seek information about voluntary assisted dying with a medical practitioner they trust and with whom they feel comfortable before beginning a formal process to access voluntary assisted dying. This will allow a person to consider information without feeling pressured to commence the process. To prevent coercion or inadvertent pressure, a health practitioner will not be able to raise or initiate a discussion about voluntary assisted dying with a person with whom they have a therapeutic relationship.
A person should be able to seek information from, and make a first verbal request to, a medical practitioner with whom they have a therapeutic relationship. If a person requests voluntary assisted dying, a medical practitioner must determine whether they will accept the role of coordinating medical practitioner. This role will require them to coordinate the process and is designed to ensure the person is supported. The Panel recommends that all health practitioners have the option to conscientiously object to participating in the voluntary assisted dying process. Consistent with existing standards of care, this conscientious objection must not impede a person’s access to what would be a legal medical treatment. The coordinating medical practitioner will be required to conduct the first assessment of the eligibility criteria and to ensure the person is properly informed. If the person meets the eligibility criteria, the coordinating medical practitioner must refer the person to another medical practitioner. The second medical practitioner will become the ‘consulting medical practitioner’ if they accept the role. They will be required to conduct a second, independent assessment.
The Panel recommends minimum qualifications for medical practitioners involved in voluntary assisted dying. The assessment of the eligibility criteria and conversations about voluntary assisted dying and end of life will require specific experience. The Panel recommends that both assessing medical practitioners must be qualified as Fellows of a College (or vocationally registered) and that at least one of the medical practitioners has at least five years of post-fellowship experience and at least one must have relevant expertise in the person’s disease, illness or medical condition.7 Prior to conducting an assessment, both medical practitioners will be required to undertake specified training. This will ensure they understand the eligibility criteria and their legal obligations. If a medical practitioner assesses a person as ineligible, the person may seek a second opinion. The Panel is of the view that this standard medical practice is part of personcentred care and allows people to ensure the issues that concern them are addressed.
Given the review of each assessment by the Voluntary Assisted Dying Review Board and potential for professional misconduct or criminal charges, the Panel is confident that medical practitioners will comply with the legislative framework and attempts to ‘doctor shop’ will be identified.
If both medical practitioners assess a person as eligible for voluntary assisted dying, the person will be required to complete a written declaration to proceed. This will clearly demonstrate the person understands their decision. The declaration will need to be signed by the person and witnessed by two independent witnesses in the presence of the coordinating medical practitioner. The written declaration represents a lasting statement of the person’s enduring request.
The person must then make a final verbal request for voluntary assisted dying to their coordinating medical practitioner and appoint a contact person. The final request must be at least 10 days after the first request. The Panel also took into account those exceptional circumstances in which a person’s death will occur within 10 days and that it would be unreasonable to preclude them from accessing voluntary assisted dying. In these instances the Panel recommends that the coordinating medical practitioner may waive the 10 day time period if their prognosis is consistent with the prognosis of the consulting medical practitioner. As a clear safeguard, under no circumstances will a person be able to make a final request on the same day as the second independent assessment. As part of the request and assessment process, the person will also be required to appoint a contact person. The contact person will take responsibility for the return of any unused lethal dose of medication after the person has died and act as a point of contact for the Voluntary Assisted Dying Review Board. The coordinating medical practitioner must then complete a final check, which will require the practitioner to certify that each step in the process has been completed.
Before writing the prescription, the coordinating medical practitioner will be required to apply for a permit from the Department of Health and Human Services. This process will be similar to the current authorisation process for other restricted drugs and provides an opportunity for an independent check that the process has been complied with before the person accesses the lethal dose of medication.
The lethal dose of medication will be dispensed by a pharmacist, who will be required to appropriately label the medication and inform the person of their obligations to safely store the medication. The pharmacist will only dispense the medication if there is a valid permit issued by the Department of Health and Human Services. This provides another independent check to ensure compliance with the legal requirements. The person will be required to store the medication in a locked box until they decide to self-administer the medication.
The Panel makes a series of recommendations about how the lethal dose of medication is prescribed, dispensed and reported on. These recommendations create a number of protections to ensure safety through constant monitoring of the lethal dose of medication, with a clear line of accountability.
The Panel has recommended protection for health practitioners who may be present when the person self-administers the medication. The Panel understands that for some people this will provide a sense of comfort, while others may want to self-administer the medication without health practitioners present.
The only circumstances in which a medical practitioner will be authorised to administer the lethal dose of medication will be if the person is physically unable to selfadminister or digest the medication. In these circumstances, only the coordinating medical practitioner will be authorised to administer the medication. While this option ensures voluntary assisted dying is not discriminatory, the Panel is of the view that it is important to limit the authorisation to administer the medication. The coordinating medical practitioner may only administer the lethal dose of medication at the request of the person and this must occur in the presence of an independent witness. If the coordinating medical practitioner is unwilling or unable to administer the medication, they may transfer the role to the consulting medical practitioner. This can only occur if the consulting medical practitioner accepts the role.
The entire request and assessment process is designed to ensure voluntary and informed decisions, and to identify and prevent potential abuse. The Panel recognises the risk that vulnerable people may be pushed or coerced into requesting voluntary assisted dying but is confident the recommended framework will identify and address instances of abuse.
 In relation to oversight the summary states
In addition to providing a clear and compassionate framework for the operation and monitoring of voluntary assisted dying, the Panel recognises that the legislation must also establish protections to keep people who may be vulnerable to abuse safe.
Part C describes:
• protections and offences;
• the establishment of the Voluntary Assisted Dying Review Board;
• medication monitoring;
• monitoring after the person has died;
• monitoring voluntary assisted dying activity; and
• a summary of the legislative safeguards.
The Panel’s recommended framework establishes a system of oversight for the entire process and of continuous monitoring of the lethal dose of medication. The process recommended by the Panel includes a series of checks involving a number of health practitioners, the Department of Health and Human Services, and independent witnesses. The system of oversight recommended by the Panel provides an additional level of protection through the review of all voluntary assisted dying activity, not just those cases where voluntary assisted dying is completed.
The Panel recommends the establishment of the Voluntary Assisted Dying Review Board (the Board). The Board will oversee the voluntary assisted dying framework and review every case and every assessment conducted by a medical practitioner to ensure compliance with the statutory requirements. Consistent with the recommendation of the Parliamentary Committee, the Board will not have the power to veto requests or arbitrate appeals.
The Panel considered the options and recommends that the Board is established as a statutory entity to provide strong governance arrangements as part of the legislative framework under which an oversight body operates. The independence of a statutory body will ensure transparency with respect to its operations.
Both the coordinating and consulting medical practitioners will have mandatory requirements to report to the Board. The dispensing pharmacist will also be required to report to the Board, as will the Department of Health and Human Services when a permit is issued. The medical practitioner who certifies the person’s death will also be required to report voluntary assisted dying to the Victorian Registrar of Births, Deaths and Marriages, who will report this to the Board. These independent reporting points will ensure the Board is able to accurately review what occurred in each case, and the Board will be able to seek further information if required.
If the Board identifies any improper conduct or potential criminal action, it will be required to refer the matter to Victoria Police, the Australian Health Practitioner Regulation Agency, or the Coroner. The Panel is of the view that these existing bodies should be utilised to investigate wrongdoing, as they already have clearly understood roles and responsibilities. The Board will not only monitor completed cases, but also every assessment for voluntary assisted dying. The Board will also monitor the lethal dose of medication to make sure it is returned if it is not self-administered. The Panel recommend a requirement to appoint a contact person, who will have clear legal obligations to return any unused medication. The person accessing voluntary assisted dying will be required to appoint a contact person before they are prescribed the lethal dose of medication. The contact person must agree to return any unused medication to the dispensing pharmacist to be destroyed after the person has died.
The Board will receive a report from the pharmacist when the medication is dispensed and when any unused medication is returned. If the medication is not returned, or it is not known whether the person self-administered the medication, the Board will be able to follow up with the contact person. Information from the notification of death will be shared with the Board by the Registrar of Births, Deaths and Marriages. This will enable the Board to follow up a notification that the medication was not self-administered. Although the Registrar of Births, Deaths and Marriages will obtain information about voluntary assisted dying, the Panel recommends that this not be included on the person’s death certificate. Death certificates are used for a range of purposes, and there is no reason to include information about voluntary assisted dying on such a public document. Other information about treatment at the end of a person’s life is not included in a person’s death certificate. To preserve the privacy of the person, their family, and health practitioners, information about voluntary assisted dying also should not be included. Instead, this information about voluntary assisted dying will be provided to the Board.
The Panel has also recommended a range of new offences that relate specifically to voluntary assisted dying to ensure people are protected. This includes new offences of inducing a person, through dishonesty or undue influence, to request voluntary assisted dying or to self-administer the lethal dose of medication. Other recommended offences include falsifying records related to voluntary assisted dying and failing to report on voluntary assisted dying. These new offences signal the serious nature of any wrongdoing associated with voluntary assisted dying.
Part D sets out the implementation considerations if voluntary assisted dying legislation is passed by the Victorian Parliament.
The Part describes:
• voluntary assisted dying in the context of existing care options;
• implementation planning and governance;
• supporting health practitioners;
• supporting patient and health practitioner communication;
• informing the community;
• supporting the safe introduction of voluntary assisted dying;
• research;
• resourcing; and
• commencement.
The Panel supports the view of the Parliamentary Committee that voluntary assisted dying should be incorporated into existing care processes to protect and support patients and to ensure sound medical practice. This will also ensure people get access to the range of treatment and care options based on their clinical needs and care goals. The Panel notes that some feedback during the consultation process advocated for the establishment of ‘independent panels’ to undertake voluntary assisted dying assessments and processes. The Panel rejected this approach and concluded that establishing independent panels to provide voluntary assisted dying would create unacceptable risks, including the possibility of fracturing existing therapeutic relationships and concentrating the skill and expertise in the hands of a few medical practitioners. This would negatively impact on the patient’s experience and is likely to result in less accurate assessments.
Based on experience overseas, the Panel expects very low rates of utilisation of voluntary assisted dying. The initial uptake of all new medical interventions is low and this will gradually increase over time. The uptake of voluntary assisted dying should be considered in the same way, and an expected gradual increase in use over a number of years reflects the evidence that when new medical interventions are introduced the uptake is gradual. The incremental increase in the use of voluntary assisted dying is demonstrated in the data reported by international jurisdictions and is consistent with the uptake of new medical interventions generally.
The Panel recommends that voluntary assisted dying implementation be considered in the context of existing care options available to people at the end of life. This will support existing therapeutic relationships, and allow review of the practice as part of overall safety and quality monitoring and review processes. To implement this approach Victoria may consider how health services in North American jurisdictions have established programs, and how they have engaged and supported staff.
Accommodating voluntary assisted dying in existing clinical relationships, wherever that is possible, will not only support safe and high-quality practices, but will also provide appropriate professional support for health practitioners. The Panel advocates that support for health practitioners who either choose to participate in voluntary assisted dying, or who conscientiously object, should be developed within existing professional support structures. It will also be important that health service boards and executives play a leadership role in facilitating considerations about service involvement in voluntary assisted dying and how staff are supported if a service decides to offer voluntary assisted dying.
The Panel recognises that the establishment of an Implementation Taskforce is essential to providing the expertise, focus and leadership to develop the necessary resources, processes and systems over the 18 months leading up to the commencement of any voluntary assisted dying legislation.
The Implementation Taskforce will play a pivotal role in focusing and coordinating the work that will need to be completed to prepare for the commencement of the legislation. This should include reviewing the functions proposed in the Parliamentary Committee’s report for the new agencies proposed to clarify roles and responsibilities of both the new and existing agencies. The Implementation Taskforce should also provide advice on the development of evidence-based resources, supports and guidelines to build a safe and compassionate voluntary assisted dying service system.
The Panel recommends that the Implementation Taskforce must engage with, and involve, key stakeholders over the 18 month period to develop effective implementation strategies and resources. Consistency in implementation and governance arrangements and staff support may best be facilitated in partnership with professional colleges and bodies such as the Australian Medical Association, Australian Nursing and Midwifery Federation, relevant professional colleges, pharmacy bodies, and consumer, carer and service representatives.
The Panel is of the view that early planning and development of associated resources and training for the implementation of voluntary assisted dying will give health practitioners and services a sufficient period of time in which to build capabilities, models of care and organisational responses.