‘To die,to sleep’ – assisted dying legislation in Victoria: A case study

Introduction

Many arguments and discussions regarding the implementation and ethical requirements of both active euthanasia and physician-assisted suicide have been made globally in recent years, including the United Kingdom, Australia, New Zealand, Canada and the United States. ¹ Euthanasia has been described as the direct assistance by a physician to an individual to commit suicide, whereas assisted dying focuses on the physician prescribing specific medication to an individual who procures it and takes it with the aim of ending their life. ² Legalised voluntary assisted dying is ethically and legally contentious and in Australia, it remains controversial, with heated debate regarding assisted dying legislation in evidence. ³

Assisted dying has been illegal in Australia following the repeal of the Rights of the Terminally Ill Act (1995)1in 1997. This legislation was effective in the Northern Territory of Australia only and saw seven patients make use of the legislation to end their lives.2This legislation was designed to encourage individuals to be both actively involved in their end-of-life decisions and to engage with palliative care early in their disease process. Limited availability of palliative care in the Northern Territory and ongoing political debate across Australia regarding the legitimacy of physician’s ending a person’s life at their request saw the legislation repealed just 9 months after its inception

In 2013, Greens MLC Cate Faehrmann introduced the Rights of the Terminally Ill bill to Parliament but was defeated 23 votes to 13, despite passionate and emotional discussions by members of the public, politicians, medical practitioners and right-to-life organisations. Since then, there is little evidence of concerted attempts to legalise voluntary assisted dying in Australia until 2017, when the Legislative Assembly in Victoria passed the Voluntary Assisted Dying Bill. ⁴ This legislation sets out eligibility criteria for access to assisted dying measures, including the application and review process. These criteria stipulate that a person must:

Be aged 18 years or older;

The individual requesting assisted dying measures is required to make three clear and unambiguous requests to a medical practitioner, which can be withdrawn at any time. Medical practitioners are not required to acquiesce to the individuals’ request and under this legislation, are able to decline further involvement in the process. Two eligible medical practitioners must examine the individual and agree that they meet the requisite criteria to access assisted dying measures under this legislation, following which the individual may make a written declaration and request. At least 9 days must elapse following this request before the individual may make their third and final request to their medical practitioners, who will complete a final review of the individual and their health status. Once completed, the medical practitioner must apply to the Department of Health for a self-administration permit, prescribe the relevant medication and provide the prescription to the individual. Following the individual’s death, the recorded cause of death will be the disease, illness or medical condition and not the administration of assisted dying measures. ³

The topic of assisted dying remains provocative, with continued discussion evident among members of the community and healthcare practitioners. ^3,5 Public views on issues such as assisted dying drive debate and discussions throughout the community and can shape public policy and legislation.1 For many, the concept of dying is confronting and fearful, fuelled by lack of knowledge about the process of dying, available services and reluctance to discuss dying with family members. ⁵ Globally, medical technology has advanced, prolonging life beyond its natural time and more clearly defining when that time will come. ^1,5 Current medical practice can create states of ‘undeath’ not previously known before – people can continue living despite catastrophic health events including massive heart attacks, total organ failure and cataclysmic brain injuries. For many people, current medical technology can only extend an untenable, painful existence, not provide them with an end to their life on their own terms. ^6,7

As a consequence of living longer, more people are likely to be affected by chronic conditions and experience intractable pain, suffering and distress, resulting in many exploring the option of assisted dying. ^{5 –7} Advocates of assisted dying argue that medical care is not limited to healing individuals but should also embrace situations where health recovery is impossible and characterised by unbearable suffering. ⁸ Assisted dying opponents argue that the implementation of assisted dying legislation is subject to abuse by family members and can leave vulnerable members of the community unprotected. ⁹

Over recent times, a number of countries, including The Netherlands, Belgium, Luxembourg, Switzerland, United States and Canada, have legalised assisted dying. ^10,11 Members of the Australian general public and politicians have exhibited emotive views based on their own experience or religious views, while the medical community has been more cautious, citing ethical viewpoints or feelings of failure to provide appropriate end-of-life care. ^{12 –14} The implementation of the Assisted Dying legislation in Victoria in 2019, sees a major paradigm shift in the care of terminally ill people, promoting patient self-determination and autonomy. ¹⁵ It provides Victorians living with terminal conditions with a choice regarding the circumstances surrounding their death, while continuing to generate discussion and debate. ¹⁶

The reality of accessing assisted dying under this legislation will be discussed utilising a case study.

All characters in this case study are fictionalised and are not related to any persons, living or dead and so no ethical approval or consent to use these details was required or sought. This case study is purely a product of the authors’ imagination, chosen to identify and discuss issues relating to the impact of the Assisted Dying Legislation.

Method

Results

The discussion around voluntary dying is passionate, with immovable advocates on either side striving to make their views dominant. As medical technology has advanced in recent decades, we can clearly see that death is no longer simply defined as being opposite to life, but is seen as interrelated processes on a continuum. Regardless of modern medical technology and the drive to save lives at any cost, death remains inevitable. In recent years, there has been an increasing trend for people with terminal illnesses to move away from the reality of ‘life at any cost’ to a concept of a death with dignity and under circumstances over which they have more control. ¹⁷ A number of states within the United States, including Oregon, California, Colorado and Vermont have legalised physician-assisted dying under legislation, with Hawaii approving assisted dying legislation set to become effective from 2019. ¹⁸ This legislation only authorises physician-assisted dying (medications prescribed by medical practitioners and taken by the individual with the goal of ending their life). ¹⁷ In the Netherlands and Belgium, medically assisted suicide has been legalised and differs from American legislation, encompassing community members including minors and individuals living with psychiatric disorders. ¹⁸

A major limitation in the discussion surrounding assisted dying is that it challenges the assumption of the right to patient autonomy in all instances. When discussing the act of suicide, it is clearly the act of an autonomous individual who has made a decision to end their life under their own terms. Assisted dying can evoke feelings of unease and discussion focusing on whether the request is a result of coercion and does not reflect the individual’s autonomy. As discussed, the concept of assisted dying is emotive, passionate and often is less focused on the wishes of the individual than on the impact on the medical practitioners who assist in the process. ¹⁸

The case study presented here is one of an ‘easy’ patient – a person with legal competency, who has information regarding the likely progress of their disease and who chooses to take control of her death by asking for her physician’s assistance. The ‘difficult’ cases, those of who do not meet the strict criteria under this legislation or those in persistent vegetative states who are unable to request assisted dying, are conversations for another day, perhaps in the not too distant future. The Assisted Dying legislation in Victoria is constrained by safeguards designed to protect the rights of individuals, but there are circumstances where the regime could be challenged and broadened to allow broader access for all Australians to assisted dying measures than the legislation currently allows. ¹⁹ Individuals who do not fit the current criteria may argue that their rights are being infringed by the legislation or that individuals who are suffering intractable pain and suffering, disability, dementia or mental illness should also be permitted to access assisted dying measures. ¹⁶

The number of people who request access to Assisted Dying measures will probably be small, but what a difference it will make to them as the human face of the outcome of this legislation. These people will likely be the ones whom palliative care cannot help and the ones who have no alternative to deal with the ravages of their disease. Palliative care within Australia, while effective for many, cannot deal effectively with all suffering and pain at the end of life. The implementation of the Victorian Assisted Dying legislation shifts the focus of discussion from the right to die to the right for a ‘good death’.

Other legislation impacting on the effectiveness of this legislation

One key component in the discussion involving medical assistance under the Assisted Dying Legislation, is that the individual must possess legal capacity to make their own decisions. ¹¹ Appropriate screening tests to determine legal capacity are required prior to implementing assisted dying measures to ensure the request is made by competent persons. Medical practitioners who will assess the individual’s legal capacity will utilise decision-making capacity legislation, which includes a four-section test. ¹²

In order to be deemed competent to make decisions, the individual must be able to:

Understand the information relevant to the decision and the effect of the decision;

This assessment process is widely utilised by a range of professional groups including legal and medical practitioners, and focuses on whether the individual is able to understand and communicate their decision. ¹⁵ It is recognised that capacity is decision specific, meaning that an individual may not have legal capacity to make a decision for one aspect of care but may be eligible to make decisions for others. ¹⁶

The Medical Treatment Planning Act (2016) ¹⁷ which came into effect in 2018, repeals previous legislation (Medical Treatment Act 1988, (Vic), ¹⁸ binds medical practitioners to utilise advance health directives and replaces medical treatment powers of attorney with medical treatment decision-makers.

Action or inaction?

Historically, there has been confusion regarding the difference between active or passive actions by physicians resulting in the death of a person with an incurable disease. Currently, a person with legal capacity has the right to refuse life-sustaining treatment knowing that this will hasten their death. ²⁰ The safeguards within the Victorian Assisted Dying legislation allows for a medical practitioner to refuse the person’s request for assisted dying measures if they have moral or other objections. The requirements of the process of requesting assisted dying measures under this legislation, also allows the physician to be assured that this is in fact the decision of the person with a terminal illness.

Medical ethics form the basis of healthcare provision for medical practitioners who will likely struggle with the dichotomy of ‘healing/killing’ given the Hippocratic Oath to do no harm. ²¹ Medical practitioners have a clearly defined duty of care based on the four principles of bioethics, beneficence (acting in the best interest of the patient, support of patient autonomy, nonmaleficence (the minimisation or avoidance of harm) and the promotion of justice. ^{12 –14} Ethical discussions supporting assisted dying legislation focus on the patient’s right for autonomy to decide the circumstances under which they wish to end their life. These discussions also highlight the role compassion towards another has in the decision-making process of individuals who are living with a terminal illness. ²²

Opponents of assisted dying measures assert that medical practitioners are charged with the responsibility of caring and comforting patients not intentionally ending their lives albeit at their request. ²³ Both sides of the argument regarding assisted dying measures recognise that patient autonomy is paramount but not unconditional, needing to be balanced by consideration of all the ethical principles. Many individuals requesting assisted dying measures suffer intractable pain and suffering, often unable to be relieved by medical measures. ¹⁹ For these people, accessing assisted dying measures provides them with a safe, legal framework, sense of comfort and feelings of control over the circumstances under which they choose the manner and timing of their death. ^{12 –14} Australian society has sent a clear message to the Australian Government that all individuals living with terminal illnesses should have the right and opportunity to control when and how they die, with dignity and reduced suffering.

The Victorian Assisted Dying legislation is responding to the clearly articulated needs of Australians, contextualising our legal system to meet the needs of the community while acknowledging that autonomy and relationships are as much cornerstones of individualised healthcare as advanced technological medical processes. ²⁴

Conclusion

Many Australians have been demanding a change to end-of-life legislation and have consistently identified in polls their support for assisted dying legislation to be instituted. ^{19 –21,23,25} Despite the Australian legislative systems’ inability to resolve the dilemma involved with end-of-life care, there remained no discernible difference between ‘letting die’ and ‘killing’. Previous discussions and debates on assisted dying have been based in abstract legal principles such as beneficence and autonomy, added to by hypothetical cases based in ‘slippery slopes’ scenarios with sometimes highly unlikely outcomes, for example, if a doctor is legally able to assist someone to die then they will set about to actively kill many of their disabled or older patients. These conversations have frequently been persuasive in bioethics discussions, based in terms such as ‘murder’, ‘suicide’ or ‘refusing treatment’ rather than focusing on the human elements of informed consent, compassion, dignity or empowerment. This legislation will provide the social construct to enable Australians to understand the decision to end one’s life under their own terms as a legitimate and not an irrational act.

Assisted Dying legislation will not provide simple answers for future questions regarding management of end-of-life care but it will at the very least start the dialogue regarding caring, empathy, love and compassion across the community.