Voluntary assisted dying in Australia: emerging questions

Until six years ago, there were no voluntary assisted dying laws in Australia, despite strong public support and fifty attempts in parliaments around the country. The change commenced in Victoria in 2017, after a parliamentary inquiry, a Ministerial Advisory Panel that consulted widely to craft recommendations for legislation, marathon parliamentary debates, and a conscience vote.1,2 Western Australia followed a similar path to their 2019 legislation,3,4 and other states soon also passed legislation. Later this year New South Wales will become the final state in which such a law comes into effect.

In response to the Northern Territory Rights of the Terminally Ill Act 1995,5 the first voluntary assisted dying legislation anywhere in the world, the federal Euthanasia Laws Act 1997 banned voluntary assisted dying legislation in both the Northern Territory and Australian Capital Territory6 until its repeal in late 2022.7 Ironically, the Northern Territory is now likely to be the last Australian jurisdiction to legislate for voluntary assisted dying.

State voluntary assisted dying laws are sufficiently similar to constitute an “Australian model”,8 a model designed to be compassionate and safe.1 To be eligible for voluntary assisted dying, a person must, among other criteria, be suffering and have an advanced progressive illness with short expected survival. In contrast, the American model does not require suffering, and the European model does not require short expected survival.9 The Australian model is highly regulated, with safeguards at each step to prevent coercion and misuse. The demand for prudence and safety far exceeds that for other life and death decisions, such as withdrawing or withholding life‐sustaining treatment. The model also upholds the rights of physicians to conscientiously object to providing any voluntary assisted dying service.

Following its legalisation, the long debate about voluntary assisted dying suddenly gave way to hives of activity preparing for its implementation. Governments provided funds to health departments to develop new systems, to employ care navigators and pharmacists, to educate clinicians, and to establish review boards. Hospitals and nursing homes needed to develop policies and procedures; death certification and coronial processes needed adjustment. Media accounts of the first people to avail themselves of voluntary assisted dying highlighted their gratitude for a law that respected personal wishes and enabled merciful release from suffering and a peaceful death surrounded by loved ones.10

Caution imposes burdens on applicants for voluntary assisted dying, their families, and participating doctors. In this issue of the Journal, White and colleagues discuss the barriers and facilitators of voluntary assisted dying for Victorians, as reported by family caregivers.11 The main barrier was finding doctors willing to assist, especially during the early days of legal assisted dying, when few doctors had completed the mandatory training. The need for one of the two assessing doctors to have expertise in the illness of the applicant also caused delays, particularly for people in regional areas with neurological diseases.11

Access problems were exacerbated by restrictions on the use of telehealth for voluntary assisted dying services by the federal Criminal Code Act 1995, which prohibits the use of a “carriage service” for the purposes of suicide.12 Despite voluntary assisted dying being clinically and legally distinct from suicide,13 health care practitioners have been advised by state health departments against using telehealth for certain voluntary assisted dying services. Telehealth for many types of medical and allied consultations was expanded hugely during the COVID‐19 pandemic, but not for seeking voluntary assisted dying, the people most ill and least able to travel for appointments. The Criminal Code Act must be amended to permit telehealth consultations regarding voluntary assisted dying when clinically appropriate.

White and colleagues found that institutional objections blocked access to voluntary assisted dying services for some Victorians, causing distress; some people had to leave their usual place of residence to gain access.11 The balance between a person's right to voluntary assisted dying and an institution's objection to it was not addressed in the Victorian, Western Australian, or Tasmanian legislation, but it has been defined in more recent state laws.8 In South Australia, for example, a person has the right to receive voluntary assisted dying services at their permanent residence, including residential aged care facilities and retirement villages, and the managing institution cannot obstruct this wish.14 But when the person is in temporary care (eg, in a private hospital or as a temporary nursing home resident), the institution can object, and alternative arrangements might be required.

White and colleagues also found that, as the voluntary assisted dying system became more established, the application process was generally less difficult.11 Many participants lauded the helpful personal and professional qualities of the doctors, care navigators, and pharmacists. The greatest facilitation was provided by care navigators who linked applicants with willing practitioners, and guided applicants through the process. Other states have learned from the Victorian experience, and now fund care navigators and dedicated pharmacy services.15,16

The first doctors to provide voluntary assisted dying services reported that assisting applicants was rewarding and professionally fulfilling.17 Most such doctors make themselves available to people they have not previously met. As they are reluctant to charge fees for voluntary assisted dying services (not covered by Medicare), much of their work is unremunerated and altruistic. A sustainable voluntary assisted dying service, however, cannot rely on the goodwill of a small number of doctors who risk burnout. The pressures on voluntary assisted dying pioneers will hopefully ease as more doctors join the community of practice and remuneration is improved.

Voluntary assisted dying review boards have reported compliance with the laws, and positive feedback from applicants and their families.15,16 Predictions by some opponents about misuse and coercion have not been realised. During 2021–22, voluntary assisted dying was involved in 0.58% of all deaths in Victoria,15 and 1.1% of all deaths in Western Australia.16 It is involved in 0.59% of deaths in Oregon,18 where self‐administered assisted dying has been available since 1998 for people expected to live less than six months. The proportion is higher in countries where practitioner administration of the final medication is the main method and where the eligibility criteria are more permissive, including Canada (3.3%),19 Belgium (2.5%),20 and the Netherlands (4.5%).21

The higher incidence of voluntary assisted dying in Western Australia than in Victoria may be explained by social and health system differences, or by differences in legislation.2,4,8 In Victoria, for example, a doctor cannot initiate discussions about voluntary assisted dying, whereas in Western Australia it can be raised as one of a range of possibilities. Further, oral self‐administration of the medication is the default option in Victoria; intravenous administration by a health care practitioner is permitted only when the person is “physically incapable of self‐administration or digestion of the voluntary assisted dying substance.”2 In Western Australia, people can decide the method in consultation with their doctors,4 and intravenous administration by a practitioner is usually preferred (77% of voluntary assisted deaths, compared with 14% in Victoria15,16). Overseas experience is similarly that intravenous administration is preferred to the oral route.19,20,21 Eligible Australians should have the option of assisted intravenous self‐administration, whereby an infusion is primed and the person can initiate flow if they so choose by, for example, opening a roller wheel.

The median age of voluntary assisted dying applicants is similar in Victoria and Western Australia (about 73 years).15,16 Most had advanced cancer (Victoria: 82%; Western Australia: 68%), neurodegenerative diseases (especially motor neurone disease), or organ failure, and most were receiving palliative care (Victoria: 81%; Western Australia: 85%). Palliative care services do not seem to have been undermined by voluntary assisted dying; their funding has increased, and they generally continue to care for people who choose the voluntary assisted dying pathway, as recommended by Palliative Care Australia.22 Interestingly, as reported elsewhere,18 about one in three people who acquire the fatal medication die without using it. Palliative care may sufficiently meet their needs, and they feel reassured by having the means to end their suffering, if needed.

Australian voluntary assisted dying laws each require reviews after two to four years of operation. Some emerging problems will be easier to resolve than others. For example, the requirement to have resided in the relevant state for at least twelve months, designed to prevent assisted dying “tourism”, is redundant now that it is available in every state. Applicants should not have to choose between voluntary assisted dying and being with their interstate family at a crucial time, and people in a border community should be fully eligible for services across the border.

Dementia, on the other hand, causes conundrums not easily resolved. A progressive degenerative disease, it is now a leading cause of death in Australia.23 As the Australian model requires the applicant to be able to make decisions throughout the process and does not permit the use of advance care directives for voluntary assisted dying, people with dementia are effectively ineligible. Many regard this as allowing unjust suffering and argue that people with dementia be permitted assisted dying. How the model might be amended to accommodate their needs is among the major questions requiring consideration.

Our communities will grapple with questions about voluntary assisted dying matters well into the future. Discussions will be informed by research of the kind published in the MJA.11 We will have the opportunity to learn how legislative variations and nuances produce different outcomes across Australia. Personal and professional experience, and public opinion, will feed into these discussions. Over time, voluntary assisted dying law and practice should be shaped and refined to better satisfy the wishes and interests of people approaching the end of their lives.