Voluntary assisted dying: challenges in Northern Territory remote Aboriginal communities

Abstract

Voluntary assisted dying (VAD) legislation has now been passed in all Australian jurisdictions, except for the Northern Territory.^{1, 2} The Voluntary Assisted Dying Independent Expert Advisory Panel led public consultations in the NT to inform development of NT VAD legislation, submitting their report to the Chief Minister in July 2024, which has been publicly released.³ This perspective article reflects on the VAD implementation challenges highlighted in this public report. We discuss the unique demographics of the NT, including a significant Aboriginal population living in remote areas coupled with a high burden of chronic disease, which poses difficulties for equitable access to end-of-life services (respecting NT cultural protocols, “First Nations” in this perspective article are referred to as “Aboriginal peoples”, which is inclusive of Torres Strait Islanders).³ “Cultural safety” is critical for Aboriginal peoples but application is contextual. Telehealth, which may help increase access, also presents challenges.

About 30% of the NT population identifies as Aboriginal, with 75% of NT Aboriginal peoples living in remote or very remote areas, compared with 15.4% nationally.⁴ In contrast, 24% of non-Indigenous people in the NT live in remote or very remote areas.^{5, 6} The NT has a 77% higher burden of disease than the national average, with NT Aboriginal peoples experiencing a disproportionate disease burden that is 3.6 times higher than that of non-Indigenous people in the NT.⁷ Remoteness is also associated with reduced access to health care, potentially including VAD services.

The Northern Territory Government health department, NT Health, manages six public hospitals and 39 remote primary health care (PHC) centres, and supports 133 clinics or services operated by Aboriginal Controlled Community Health Organisations.⁸ In addition to vast distances, the health system is beleaguered by workforce shortages, a high workforce turnover, cross-cultural challenges, and profound socio-economic disadvantage.^{9, 10} Thus, equitable access to culturally safe health services, particularly for palliative and end-of-life care, including VAD, will require both policy and resource commitments.

The NT was the first Australian jurisdiction to legalise VAD in 1995 before losing this right under a federal government in 1997. The Restoring Territory Rights Bill 2022¹¹ lifted this restriction.

The Commonwealth Criminal Code Act 1995 prohibits the use of carrier services (telephone, email or internet communications) to disseminate suicide-related materials.¹² Significant legal barriers remain in the use of telehealth for VAD, confirmed with a recent federal court decision that the Criminal Code Act applies to VAD.¹³ Clinicians are reluctant to use telehealth for VAD due to legal risks. A Commonwealth bill to amend this was introduced in February 2024 and subsequently removed.^{14, 15} Advocacy around this problem is ongoing, with current preclusion of electronic communication having significant ramifications for the NT.¹⁶

Between August 2023 and April 2024, the expert advisory panel undertook extensive public consultation to gather Territorians' views on potential VAD legislation and implementation, under the Inquiries Act 1945 (NT).¹⁷ As a public consultation process, the process did not require ethics approval, and was overseen by an expert panel, which comprised clinical, legal, consumer, disability and culturally diverse experts, including two Indigenous members. Consultation spanned an online survey with 1 396 responses, 98 written submissions, and public forums, round tables and expert meetings.³ The panel prioritised engaging with Aboriginal Territorians and rural and remote stakeholders, developing resources such as plain language guides, posters, radio advertisements, and voice recordings in 14 languages. The final report from the panel is publicly available, and it includes the community member quotations used herein.

Once the nation's leader in VAD, the NT will now be Australia's last jurisdiction to (re)implement voluntary assisted dying. The recent NT consultation process revealed strong preferences for equity of access but also the need to carefully calibrate services to make them culturally safe. This will require additional clinical resources to bring VAD services closer to where patients live, without further overburdening poorly resourced remote PHC services. This will warrant a collaborative approach and expansion of outreach and mobile services. If legalised and with careful attention to cultural safety and clinicians' voices, telehealth could be a viable and safe supplement²⁸ to face-to-face consultations. Central to the NT context will be Aboriginal input into the governance, design, implementation and iterative evaluation of VAD.

Geetanjali Lamba and Kane Vellar were part of the Chief Minister's Expert Advisory Panel on voluntary assisted dying. They both receive a salary from NT Health. Some panel work involved travel within the Northern Territory, where travel expenses were covered in line with NT Government policy. No additional salary or payment was taken from the panel work.

Not commissioned; externally peer reviewed.

Lamba G: Conceptualization, data curation, formal analysis, investigation, methodology, project administration, writing - original draft, writing – review and editing. Vellar K: Conceptualization, investigation, methodology, project administration, writing - original draft, writing - review and editing. Burgess CP: Conceptualization, data curation, supervision, writing - original draft, writing - review and editing. La Brooy C: Conceptualization, supervision, writing - original draft, writing - review and editing. Komesaroff PA: Conceptualization, data curation, supervision, writing - original draft, writing - review and editing.