Submission to the Victorian Government's Ministerial Advisory Panel on the Voluntary Assisted Dying Bill Discussion paper

Monday 10 April, 2017

Context for Cancer Council Victoria's submission

Cancer Council Victoria (Cancer Council) is a non-profit cancer charity organisation that has been involved in cancer research, patient support, cancer prevention and advocacy for 80 years. Cancer Council is a leading and active member of the cancer community, which comprises people affected by cancer, whether through a personal diagnosis, or as family members, carers or health practitioners.

Cancer accounts for approximately one-third of deaths in Victoria.[1] Most people in Victoria who are receiving palliative care have cancer (81% in 2011).[2] In the jurisdictions that have legislated for assisted dying in some form, terminal cancer patients have comprised the largest group of patients to access some form of assisted dying.[3]  

Cancer Council provides this submission to the Ministerial Advisory Panel with a view to assisting the Panel to ensure that if assisted dying is introduced in Victoria, the legislation creates ‘a compassionate legislative framework that is workable and includes strong safeguards.'[4]

Support for end of life care and decision-making

The purpose of the proposed assisted dying framework is to permit people to obtain assistance to die in the ‘small number of circumstances in which palliative care cannot provide the relief needed to address the pain and suffering at end of life'.[5] As framed in the Legislative Council Legal and Social Issues Committee's Inquiry into end of life choices final report (2016)[6] and the Voluntary Assisted Dying Bill Discussion Paper, assisted dying, if legislated for, should be available only when the patient, with capacity and fully informed of the options for managing their suffering, decides that their suffering cannot be relieved in a manner that they deem tolerable.

In Cancer Council's view, if assisted dying is introduced, it will be the community's collective responsibility to ensure that it is, in fact, only used in the anticipated ‘small number of circumstances'. Every effort must be made to provide care and support for all people at end of life, and for their families and carers, to enable them to experience deaths that are as dignified and free from pain and suffering as possible.   

It is essential that consideration of assisted dying is seen within the broader context of end of life decision-making and care, particularly the availability of palliative care, and support for people's decision-making at end-of-life, including through advance care planning.

It is important to emphasise that there are gaps in palliative care service resourcing, availability and training in Victoria. Cancer Council considers that both community and acute palliative care services need to be more widely available across Victoria, especially in regional areas and other areas with limited access to palliative care services, to ensure person-centred end of life care on an equitable basis for all Victorians. Palliative care services should include not just clinical care, but also access to allied health, psychological support and other multidisciplinary services integral to best practice palliative care delivery, whether in an acute or community setting.

Cancer Council welcomes the Government's ongoing commitment to growth funding to support additional community palliative care services, as outlined in its response to the Inquiry into End of Life Choices final report. Further support is also required, in particular, for palliative care consulting services and inpatient wards to enable better support in both acute and community settings, especially in regional areas.

Cancer Council also welcomes the Government's increased emphasis on and resourcing for advance care planning, including the introduction of the Medical Treatment Planning and Decisions Act 2016 (Vic), which will enable people to make binding instructional directives and values directives to guide the end of life and other medical care they want to receive if they lose decision-making capacity.

Together, these initiatives and others outlined in Victoria's End of Life and Palliative Care Framework (including the goals of people being cared for and dying in the place of their choice) should provide the assistance and support required for people to exercise more control over their end of life care and how they die.

In addition to these initiatives, health practitioners need ongoing support and training to identify when a referral to palliative care will be beneficial, to discuss palliative care with their patients, and to make early referrals to palliative care services. Patients and carers need increased support and information to understand the role of palliative care as part of comprehensive end of life care.

The resourcing required to develop and implement a ‘compassionate legislative framework that is workable and includes strong safeguards' must not come at the expense of existing or committed funding for palliative and other end of life care.

All end of life choices and services must be available on an equitable basis to all Victorians, including people in regional and rural areas, people with less common illnesses, people from culturally and linguistically diverse communities, Aboriginal and Torres Strait Islander people, people with greater health literacy needs, and people with limited financial resources. If assisted dying is introduced, it too should be available on an equitable basis to all Victorians, but situations in which assisted dying is available, but full palliative care services are not available, must be avoided.

Cancer Council makes the following comments in response to specific issues raised in the Discussion Paper to inform the development of the proposed legislation. 

Enduring and unbearable suffering that cannot be relieved in a manner that the patient deems tolerable

The proposed assisted dying framework makes clear that whether or not suffering can be relieved in a manner that the patient deems tolerable is a subjective decision that only the patient can make. As stated in the Discussion Paper, ‘This means that while a medical practitioner would determine that a person has a serious and incurable condition and is at the end of their life, it is the person who would determine whether or not their suffering is unbearable.'[7]

In order to be able to make the decision as to whether their suffering can or cannot be relieved in a manner they deem tolerable, people who consider assisted dying must receive full and objective (as far as possible) information about their condition, their prognosis and the therapeutic, supportive and palliative care options that are available to them to reduce their suffering. As mentioned above, they must also have real and practical access to the palliative care or other services that may alleviate their suffering, so that decisions are not based on an absence of knowledge or availability of palliative care options that may reduce their suffering.  

The role of doctors

It is not entirely clear from the Discussion Paper what the role of the participating doctors will be in dealing with requests for assisted dying. For example, the terms ‘assess', ‘confirm' or ‘approve' have different meanings but are all used interchangeably to refer to processes and outcomes relating to assisted dying requests.

Doctors involved in requests for assisted dying must have the relevant expertise and experience required to appropriately respond to a request for assisted dying from the particular person making the request. Under the proposed framework, both the primary and secondary doctor must inform the patient of their diagnosis, prognosis, treatment options, end of life care services and the risks and likely results of ingesting the lethal drug. Both doctors must be confident that the person is well informed about their diagnosis, prognosis and treatment and care options, including palliative care options, and is making an informed decision. In many cases this will require specialist expertise in the condition that the person making the request has. It will also require a good understanding of the patient as a person, which may come from prior knowledge or may need to be acquired over time.

In order to properly ‘assess' a request, doctors involved in requests for assisted dying also need a good understanding of end of life and palliative care options that might alleviate the patient's suffering. Additional training may be required before a doctor is able to ‘assess' a request for assisted dying.  

Patient information and support needs

It is essential to the proposed framework that people who request assisted dying be properly informed, including of palliative care, as recommended by the Parliamentary Committee and as outlined in the Discussion Paper. Information about prognosis, end of life care and assisted dying must be provided sensitively and in such a way that the patient is willing to receive it and able to understand it. Patients who request assisted dying must receive detailed information about the availability of palliative care and other supportive care services to address psychosocial needs. Information must be tailored to the individual patient's needs and circumstances and communicated sensitively, and their comprehension of the information provided must be checked.

Support for family members and carers

Family members and carers of people who are considering making or have made a request for assisted dying will have specific information, emotional and practical support needs, and will require additional information and support, both before and during the request process, and after the person's death (whether assisted or otherwise). Debriefing, counselling and other support services will need to be available prior to, at the time of and after death, and family members and carers must be informed of these services and how to access them.  

Public communication about assisted dying

If assisted dying becomes law in Victoria, there will need to be adequate public awareness of its availability, the conditions applying to it, and how it can be accessed. All public communication about the scheme should be aimed at providing information and support to the ‘small cohort of patients'[8] likely to be eligible. All communication will need to be carried out in a manner that is appropriate to the sensitivity of the issues raised for patients suffering at the end of life, and their families and carers. Communication by those who provide assisted dying services will need to be strictly controlled to ensure that assisted dying is not, whether explicitly or subtly, promoted in a way that risks positioning assisted dying as the community's expectation for people with terminal illnesses, or that exerts pressure on individuals with terminal illness to enquire about or request assisted dying.

Health practitioners and health services choosing not to participate in assisted dying

Cancer Council supports the Parliamentary Committee's recommendation that ‘No doctor, other health practitioner or health service can be forced to participate in assisted dying'.

In Cancer Council's view, the wish not to participate in assisted dying should not be framed in the legislation as a matter of ‘conscientious objection', the term used in the Discussion Paper. While the concept of ‘conscientious objection' may cover some health practitioners' wish not to participate in assisted dying-for example, because of religious or other ethical objections-it is unlikely to cover the circumstances of all health practitioners or health services who wish not to participate in assisted dying. The proposed framework will involve the participation of a number of health practitioners with different kinds of expertise at different stages and performing different roles. Some practitioners will not want to participate in assisted dying for reasons that are better understood in terms of the nature of their medical practice than questions of conscience. Some practitioners will have concerns about the ways in which the availability of assisted dying will impact on their therapeutic relationship with their patients, and will prefer not to have it as part of their practice. It may not always be clear whether health practitioners wish not to participate as a matter of principle, as compared to feeling that they do not have the knowledge or confidence to provide the information and make the decisions and judgments that the legislation will require.

Attempting to force all of these different circumstances into the concept of ‘conscientious objection' is likely to create unnecessary difficulties at a number of levels: for health practitioners making decisions about whether they participate in assisted dying, and working through the reasons for their decision; in communication between health practitioners and patients about whether practitioners offer assisted dying and why or why not; and in assumptions by others about the choices made by individual health practitioners to participate or not to participate. The need to respect the choices of health practitioners and health services not to participate in assisted dying can be achieved without use of the term ‘conscientious objection'.

Unintended use or misuse of the lethal drug

The proposed framework appears to permit people to keep a single dose lethal drug in their homes (or other dwellings) for an unspecified length of time. This carries inherent risks of unintended use or misuse of the lethal drug.

The lethal drug must be clearly labelled in secure, tamper-proof containers as a lethal drug, to prevent against accidental or unintended use. There need to be measures in place to ensure so far as possible that regulators are aware of the quantity of the lethal drug in the community and who has access to it. Such measures could include, among others, real-time monitoring of the provision of prescriptions for the drug and of the dispensing of the drug. Measures will also be needed to ensure the return or safe disposal of the drug if the patient decides not to proceed with assisted dying or otherwise dies without taking the drug   

Monitoring, evaluation and oversight

If assisted dying is introduced, its operation will need to be underpinned by continuous and adequately resourced monitoring and evaluation of all aspects of the scheme.

The proposed scheme will have a range of effects on end of life care. Its operation cannot be measured solely by the number of people who receive an assisted death. Cancer Council recommends that if assisted dying legislation is introduced, there should be a requirement for formal notification of each stage of the request process completed, and of the person's death (whether through assisted dying or not) to a designated body-whether to the proposed Assisted Dying Review Board or another body. Notification of each stage of the process would provide up-to-date and detailed information of how assisted dying requests are dealt with, for example, how many progress beyond each request stage and the reasons why or why not, and also factors relevant to requests that proceed to an assisted death and those that do not.

The monitoring and evaluation framework will need to cover information and other resources developed to support implementation of the scheme, community perceptions of the operation of the scheme, and the experiences of patients, families, carers and health practitioners.

This kind of information will be essential to tracking how the scheme is working in practice and identifying any changes or additional measures that are needed to ensure that the scheme operates as intended, and that any negative, unintended effects are quickly detected and addressed.  

While post-death review of an assisted death is necessary, sensitivity should be given to the privacy of the person who has died, and the privacy and experiences of grieving family members.

Death certification

Cancer Council Victoria collects details of all cancers diagnosed in Victoria on behalf of the Secretary of the Department of Health and Human Services. The Improving Cancer Outcomes Act 2014 (Vic) requires the collection of this information. The information is recorded in the Victorian Cancer Registry (the Registry). The Registry also receives information on all deaths registered in Victoria, via an agreement with the Victorian Register of Births, Deaths and Marriages. Regardless of the other detail recorded on the death certificates in relation to underlying, antecedent or direct causes of death, it is essential that death certificates continue to record the underlying condition in respect of which the person was eligible for assisted dying. This will enable the Victorian Cancer Registry and other relevant agencies to retain complete and accurate records of all deaths relevant to their remit.

Preparation for implementation

If legislation for assisted dying passes, a large amount of work will be needed between passage of the legislation and implementation of the scheme to ensure that the community and health practitioners and health services are prepared for its commencement, and an appropriate monitoring and evaluation framework is in place from the outset. This will include, for example, regulations, carefully tested information resources for patients and carers, clinical guidelines or other forms of professional guidance or support, education and training of health practitioners, and clarification of how participation in the scheme will be financed. This work, which will need to be steered by an interdisciplinary group, will need to commence immediately upon passage of the legislation. The proposed Bill for assisted dying must be accompanied by a clear plan and framework for the performance, oversight and funding of this essential work. 

[1] Thursfield V, et al. Cancer in Victoria: Statistics & trends 2013 Cancer Council Victoria, Melbourne 2014. 

[2] Palliative Care Victoria ‘Fact sheet about palliative care services in Victoria' 2012.

[3] Emanuel, E, Onwuteaka-Philipsen, B, Urwin, J, and Cohen, J (2016) ‘Attitudes and Practices of Euthanasia and Physician-Assisted Suicide in the United States, Canada, and Europe' JAMA 2016;316 (1):79-90

[4] Hon Jill Hennessy MP, Minister for Health in Victorian Government, Department of Health and Human Services Voluntary Assisted Dying Discussion Paper (2017), at iv.

[5] Ibid, p 1.

[6] Legislative Council Legal and Social Issues Committee, Parliament of Victoria Inquiry into end of life choices final report (2016).

[7] Voluntary Assisted Dying Discussion Paper (2017), p.7.

[8] Inquiry into end of life choices final report (2016), p 212.

Updated: 10 Apr, 2017