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Murphy, Katie --- "Voluntary assisted dying: Barriers to access" [2022] PrecedentAULA 8; (2022) 168 Precedent 28

VOLUNTARY ASSISTED DYING

BARRIERS TO ACCESS

By Katie Murphy

This article provides an overview of the state voluntary assisted dying (VAD) regimes in Australia and the barriers to access for eligible patients in some states.

The right to access VAD has been legalised in ten countries and in ten US states.^[1] In Australia, Queensland recently joined Victoria, WA, Tasmania and SA in passing legislation permitting VAD.^[2] The NSW Parliament will likely consider a bill legalising VAD in the coming months.^[3] The ACT and NT governments do not have legislative power to pass laws relating to VAD,^[4] despite calls for the repeal of federal legislation that prevents this.^[5]

The Australian regimes seek to balance a person’s ability to choose the timing of their death in a compassionate manner with protections against the misuse of VAD laws and against the coercion of a vulnerable cohort of people. This article highlights the key differences between the state regimes, and considers how the various schemes inadvertently prevent equal access for eligible patients.

While it is acknowledged that the availability of physician-assisted dying is a contested political and moral issue, it is outside the scope of this article to consider arguments against the existence of the laws.

WHAT IS VOLUNTARY ASSISTED DYING?

In the Australian context, VAD refers to an intentional act by a medical practitioner to assist a person with legal competence to voluntarily bring about their death and thereby end their suffering. It differs from non-voluntary euthanasia, where the patient lacks competence, and involuntary euthanasia, where the patient is competent but has not expressed a desire to die.

Assisting or encouraging suicide remains a crime in every Australian state and territory.^[6] This applies even where the victim requests such assistance and where the accused acts compassionately.^[7] The VAD regimes are an exception to these crimes.

A decision by a medical practitioner to withhold or withdraw life-sustaining treatment from a non-capacitous patient where further treatment would be futile does not constitute VAD.^[8] In these circumstances, the patient is considered to have died naturally from their underlying illness, and the doctor is not liable for their death. Nor is a doctor liable where a patient’s death follows the administration of pain-relieving medication given with the intent of reducing suffering rather than of causing death.^[9]

STATE REGIMES

There is no legal ‘right’ to access VAD in Australia. Rather, a patient must satisfy the numerous threshold requirements prescribed under the various state regimes, and must have access to participating health services and practitioners.

Generally, the Australian regimes require that the person seeking VAD must have an advanced, progressive and incurable condition that will cause death, and from which they are suffering intolerably in a manner which cannot be relieved.^[10] No state permits access to VAD on the basis of disability or mental illness alone, and infirmity associated with old age is also insufficient. The person must be at least 18 years old, have decision-making capacity in relation to VAD, be acting voluntarily,^[11] and ordinarily reside in the relevant state.^[12]

In Victoria, WA, SA and Tasmania, access to VAD is limited to those whose death is anticipated within 6 months, or within 12 months where the underlying condition is neurodegenerative in nature.^[13] In comparison, the Queensland legislation extends VAD access to those who anticipate death within 12 months and are suffering from any condition, provided that it satisfies the other requirements outlined above.^[14]

The various regimes contain extensive processes and timelines which must be adhered to by medical practitioners facilitating requests, and assessing patient eligibility, for VAD. In each of the state schemes, patients seeking an assisted death must first be assessed by a coordinating medical practitioner and then by a second consulting medical practitioner, with further requirements for additional requests by the patient and assessments after that.^[15]

Only registered medical practitioners may assess a patient’s eligibility for VAD; however, the regimes differ in their requirements regarding the practitioner’s level of experience and specialisation.^[16] All states require the practitioner to refer the patient for specialist opinion if they are unable to determine any aspect of their eligibility for VAD themselves.^[17]

Another key difference in the various state Acts relates to the administration of lethal medication. In Victoria and SA, the default position is that the patient must self-administer the medication, and medical practitioners are only permitted to administer lethal medication when the patient is physically incapable.^[18] In contrast, WA, Queensland and Tasmanian legislation allows practitioner administration where self-administration would be inappropriate considering the person’s ability to self-administer or concerns about self-administering, or the suitable method of administration for that person.^[19]

BARRIERS TO ACCESS

The extensive eligibility and procedural requirements contained within the Australian state regimes are directed to ensuring that there are comprehensive protections for vulnerable members of the community. However, some aspects of these safeguarding provisions have also inadvertently created barriers to equal access for eligible patients.

In the 2 years since the Victorian legislation came into force, 331 people have ended their lives through the scheme.^[20] The Victorian VAD regime has been shown to be safe in that it has successfully ensured that only eligible patients can access VAD.^[21] The scheme has, however, been criticised for being overly burdensome on doctors, delaying access for very unwell patients and inhibiting informed decision-making by patients regarding end-of-life care.^[22]

The issues identified in the Victorian scheme become particularly pertinent in states larger in area and more geographically diverse. It is perhaps for this reason that the End-of-Life Choices (Voluntary Assisted Dying) Act 2021 (Tas) (Tasmanian Act), Voluntary Assisted Dying Act 2019 (WA) (WA Act) and the Voluntary Assisted Dying Act 2021 (Qld) (Queensland Act) all contain, within their principles and objectives, a commitment to ensuring equal access to VAD for people from all geographical regions.

The following elements of the different state Acts arguably prevent eligible patients who are otherwise intended to benefit from the schemes from accessing assisted dying.

Initiation of the process

In Victoria and SA, health practitioners are not permitted to initiate a discussion about VAD with their patients – the topic can be raised only by the patient, who must use specific language when asking about VAD.^[23] This is the only Australian legislative restriction placed on medical practitioners’ discussion with their patients about what is an otherwise lawful clinical option.^[24]

This restriction was intended to protect vulnerable patients against coercion and undue influence, but it has also inadvertently inhibited the doctor’s ability to discuss all options for high quality end-of-life care. It therefore diminishes a patient’s ability to make an informed decision regarding their healthcare options.^[25]

By requiring patients themselves to be aware of the availability of VAD so they can raise the issue with their doctor, VAD access is arguably being limited to patients of a certain demographic — those who have a certain level of health literacy and speak English as their first language. This observation is demonstrated in the Victorian statistics on VAD, which show that the majority of VAD applicants lived in metropolitan areas and were born in Australia.^[26] The requirement for patients to initiate the VAD discussion may also result in otherwise eligible and interested patients who are unaware of the restriction erroneously believing that they cannot access VAD, or that it is not appropriate for them, as their doctors have not raised it.

Perhaps informed by the Victorian experience, the WA, Queensland and Tasmanian regimes permit medical practitioners to raise VAD with their patients, on the condition that they simultaneously provide information regarding available treatment and palliative care options and the likely outcomes of these actions.^[27]

Administration of lethal medication and required specialisation

In Victoria and SA, only a registered medical practitioner may administer the lethal medication to the eligible patient. This arguably presents a further barrier to access for patients living in a rural or regional area, as access to doctors willing to participate in VAD would be limited. In Victoria, for example, only 37 per cent of doctors trained in VAD work in rural areas.^[28] In Tasmania, Queensland and WA, this difficulty has been mitigated because a nurse practitioner is permitted to administer the medication to an eligible patient.^[29]

The Acts also differ in relation to the level of medical specialisation required to be involved in the VAD process. The Voluntary Assisted Dying Act 2017 (Vic) (Victorian Act) and the Tasmanian Act require that at least one of the doctors involved be a specialist with at least 5 years’ experience, and have their specialisation in the area of the person’s disease, illness or medical condition.^[30] The Voluntary Assisted Dying Act 2021 (SA) (SA Act) contains a similar, but slightly less onerous, requirement and provides that the coordinating doctors may be vocationally registered general practitioners.^[31]

In drafting the Queensland legislation, there was concern that imposing onerous specialisation requirements ‘would be a barrier to access, especially in rural, regional and remote areas’ where access to experienced medical practitioners is limited.^[32] The legislation therefore permits specialist medical practitioners with 1 year of experience, or doctors with general registration who have at least 5 years’ experience, to act as the coordinating or consulting doctor.^[33] WA has similar provisions, but requires that generalist practitioners have 10 years’ working experience.^[34]

Conscientious objection

It may be accepted that healthcare practitioners should not be forced to participate in treatment to which they morally object. However, there remains a requirement to ensure that eligible patients are not denied access to what is otherwise a lawful healthcare service.

All states that have legalised VAD allow healthcare practitioners who conscientiously object to assisted dying to decline to participate in the schemes. In Victoria, SA and Tasmania, a doctor who conscientiously objects to VAD is not required to refer the patient to another practitioner willing to engage in the scheme, but the Tasmanian Act does, however, oblige the doctor to provide the patient with details of the local VAD Commission.^[35]

In Victoria and Tasmania, VAD is therefore treated differently to another morally contentious healthcare issue – access to abortion. Both of those states require a practitioner who conscientiously objects to abortion to refer the patient to another doctor willing to provide advice.^[36]

In WA, the legislation requires a doctor to inform a patient of their conscientious objection immediately, and establishes minimum information provision requirements for doctors responding to patient requests for VAD.^[37] This balances a practitioner’s right to conscientiously object with minimising any impact upon a patient’s ability to access a lawful health service.

The model most likely to ensure that a doctor’s conscientious objection does not deny patient access to VAD is the Queensland Act. This requires health practitioners who conscientiously object to VAD not only to inform the patient of their objection, but also to provide the patient with information about a health practitioner or service that is likely to assist them in accessing VAD.^[38]

Institutional objection

In Victoria, anecdotal evidence suggests that eligible patients have been denied access to VAD as a result of institutional or organisational objections to being involved in providing such services.^[39] The Victorian, Tasmanian and WA Acts are silent on this issue.

An organisation’s refusal to permit the discussion or provision of VAD on its premises may force a very unwell patient either to leave the facility in order to have their eligibility for VAD assessed, or to relocate entirely in order to access the scheme. The issue is particularly acute in remote and regional areas, where relocation may require the patient to travel long distances; this means those who are too unwell to do so will be excluded from accessing VAD.

To address this issue, the SA Act requires that health services and residential facilities that conscientiously object to assisted dying inform patients of their objection upon admission. The Act also requires them to facilitate the transfer of the patient to another facility which does not object to VAD, if requested.^[40] The Queensland legislation contains similar provisions, and also requires entities that do not provide services associated with VAD to publish this information in an easily accessible forum.^[41]

Bar on telehealth advice

The Criminal Code Act 1995 (Cth) (Criminal Code Act) prohibits the use of a carriage service for ‘suicide related material’.^[42] This conflict with the various VAD regimes has been interpreted to mean that all communications relating to VAD must be made face to face. Medical practitioners and nurses have therefore been advised not to discuss VAD with patients by phone or email, and pharmacists cannot provide telephone updates to patients regarding the arrival of the lethal medication to be administered during VAD.^[43]

Access to doctors via telehealth has become particularly important in the last 18 months as a result of COVID-19. Even after the pandemic, the issue created by the apparent prohibition on the use of telehealth in relation to VAD will continue to affect those living in regional and remote areas who may be too unwell to travel.^[44] The Victorian Voluntary Assisted Dying Review Board and Queensland Premier Annastacia Palaszczuk have called upon the federal Government to create an exemption to the Criminal Code Act, to permit qualified doctors to discuss VAD with their patients over the phone or via teleconference.^[45] However, the federal Government has indicated that it has no plans to amend the relevant Code provisions at this time.^[46]

Proximity to death

The state Acts limit access to VAD to those in the final months of their life, or in the final year of their life in the case of neurodegenerative conditions.^[47] Only the Queensland legislation applies the same 12-month prognostic timeframe to all illnesses and conditions.^[48]

Prior to the passage of the Victorian Act, policy-makers were concerned that people with neurodegenerative conditions would lose the capacity to apply for VAD if they were subject to a shorter prognostic time frame requirement.^[49] There does not otherwise appear to be a clear clinical justification for the application of the different time limits for different conditions contained within the Victorian, WA, Tasmanian and SA Acts.

Clinician estimates regarding prognosis can often, understandably, be unreliable or overly optimistic, and can also vary between practitioners.^[50] The difficulty in prognosticating on terminal and chronic illnesses means that some patients will die before satisfying the various procedural requirements for access to VAD. This also has the effect of prolonging patient suffering in cases where their death is anticipated to occur within a slower time frame.

If it is considered that the inclusion of a prognostic time frame is necessary to ensure the safety and viability of VAD legislation in Australia, the Queensland legislation offers a more appropriate model to ensure equal access to assisted dying as it does not differentiate on the basis of the nature of the underlying condition or illness.

CONCLUSION

Perhaps more than for other healthcare laws, any legislation regulating VAD must contain clear safeguards to protect vulnerable patients. There is a tension, however, in balancing the necessary safeguards with respect for patient autonomy and with the need to ensure equal access for eligible patients who are intended to benefit from the schemes.

Findings from the Victorian VAD model over the past 2.5 years have enabled other states to proactively address a number of practical issues when drafting their respective legislation. The efficacy of the Victorian Act itself is required to be reviewed in June 2024.^[51] This will provide a further opportunity for legislators to consider the voices of health practitioners involved in the scheme, and to address the issues outlined above to ensure that the legislation continues to ensure safe access to VAD. Until this occurs, VAD will continue to remain less accessible to some members of the community, particularly those who live regionally or remotely, have English as a second language or have a limited understanding of the Australian legal and healthcare systems.

Katie Murphy is a Senior Associate in Maurice Blackburn’s Melbourne office, where she practises in medical negligence law and acts in coronial inquests. Katie also works as a pro bono solicitor at the Alfred Hospital’s HeLP Patient Legal Clinic, and has a Master’s Degree in Medical Law from King’s College London.

^[1] Assisted dying has been legalised, either entirely or in part, in New Zealand, Canada, Colombia, the Netherlands, Belgium, Luxembourg, Switzerland, Germany, Spain and Austria, though it may be referred to in different terms in the various locations. In the US, it has been legalised in Washington, D.C. and the states of Oregon, Washington, Vermont, California, Colorado, Hawaii, New Jersey, Maine, New Mexico and Montana.

^[2] Voluntary Assisted Dying Act 2017 (Vic) (Victorian Act), Voluntary Assisted Dying Act 2019 (WA) (WA Act), End-of-Life Choices (Voluntary Assisted Dying) Act 2021 (Tas) (Tasmanian Act), Voluntary Assisted Dying Act 2021 (SA) (SA Act), Voluntary Assisted Dying Act 2021 (Qld) (Queensland Act). VAD will remain illegal in Tasmania, SA and Queensland until their laws commence in October 2022, late 2022 and January 2023 respectively.

^[3] Voluntary Assisted Dying Bill 2021 (NSW).

^[4] Euthanasia Laws Act 1997 (Cth).

^[5] I Nowroozi, ‘Request to allow voluntary assisted dying laws in ACT and NT denied by Attorney-General Michaelia Cash’, ABC News, 8 October 2021.

^[6] Crimes Act 1958 (Vic), s6B(2); Crimes Act 1900 (NSW), s31C; Criminal Code Act (NT), sch 1, cls 162(1)(b), 162(3); Crimes Act 1900 (ACT), s31C; Criminal Law Consolidation Act 1935 (SA), s13A(5); Criminal Code Act Compilation Act 1913 (WA), s288(2); Criminal Code Act 1899 (Qld), s311(c).

^[7] However, these factors may be relevant to the decision to prosecute, or in sentencing.

^[8] See for example Messiha v South East Health [2004] NSWSC 1061.

^[9] The ‘doctrine of double effect’ has not been applied by an Australian court, but it has been applied in New Zealand, Canada, the UK and the US. In SA, Queensland and WA, the doctrine is codified in legislation. See Criminal Code (Qld), s282A; Consent to Medical Treatment and Palliative Care Act 1995 (SA), s17; Criminal Code (WA), s259.

^[10] Victorian Act, s9(1)(d); WA Act, s16(1)(c), Tasmanian Act, ss6, 14; SA Act s26(1)(d); Queensland Act, s10(1)(a).

^[11] The Victorian and SA Acts do not specify voluntariness as an eligibility requirement; however, whether the patient is acting voluntarily in requesting VAD is assessed during the request process.

^[12] The Queensland Bill, s12 contains an exemption from the residency requirements on particular grounds.

^[13] The Tasmanian Act, s6(3) permits the VAD Commission to waive the requirement if satisfied that the person’s prognosis is such that the provision should not apply.

^[14] Queensland Act, s10(1)(a)(ii).

^[15] Victorian Act, pt 3, divs 2–6; WA Act, pt 3, divs 2–6; Tasmanian Act, pts 5–10; SA Act, pt 4, divs 2–6; Queensland Act, pt 3, divs 1–5.

^[16] Victorian Act s10, WA Act, s17; Tasmanian Act, s9; SA Act, s27; Queensland Act, s82.

^[17] Victorian Act, s18; WA Act, s26; SA Act, s36; Queensland Act, s21. Tasmanian Act, s25 (uses language of permission – ‘may’).

^[18] Victorian Act, s66(1)(a); SA Act, s71.

^[19] Tasmanian Act, s86(5); WA Act, s56(2); Queensland Act, s50(2).

^[20] Victorian Voluntary Assisted Dying Review Board, Report of Operations: January to June 2021 (Report, 2021).

^[21] Ibid.

^[22] L Wilmott, BP White, M Sellars and PM Yates, ‘Participating doctors’ perspectives on the regulation of voluntary assisted dying in Victoria: A qualitative study’, Medical Journal of Australia, Vol. 215, No. 3, 2021, 135.

^[23] Victorian Act, s8(1); SA Act, s12; Victorian Department of Health and Human Services, Voluntary Assisted Dying: Guidance for Practitioners (Guideline, July 2019) 7.

^[24] C Hempton, ‘Voluntary assisted dying in the Australian state of Victoria: An overview of challenges for clinical implementation’, Annals of Palliative Medicine, Vol. 10, No. 3, 2021.

^[25] L Wilmott, B White, D Ko, J Downar and L Deliens, ‘Restricting conversations about voluntary assisted dying: implications for clinical practice’, BMJ Supportive & Palliative Care, Vol. 10, 2020, 105.

^[26] Victorian Voluntary Assisted Dying Review Board, above note 20.

^[27] WA Act, s10(3); Tasmanian Act, s17(2); Queensland Act, s7(2).

^[28] Victoria Voluntary Assisted Dying Review Board, Report of Operations: January to June 2020 (Report, 2020).

^[29] Tasmanian Act, s62(2); Queensland Act, s83; WA Act, s54(1)(a)(ii).

^[30] Victorian Act, s10; Tasmanian Act, s9.

^[31] SA Act, s27.

^[32] Queensland Law Reform Commission, A Legal Framework for Voluntary Assisted Dying (Report No. 79, May 2021) 403, [13.114].

^[33] Queensland Act, s82(1)(a).

^[34] WA Act, s17(2).

^[35] Tasmanian Act, s18(1).

^[36] Abortion Law Reform Act 2008 (Vic), s8; Reproductive Health (Access to Terminations) Act 2013 (Tas), s7(2).

^[37] WA Act, s20(5).

^[38] Queensland Act, s84(2).

^[39] M Cunningham, ‘“Discriminatory and unethical”: Palliative care service criticised over failure to verify euthanasia deaths’, The Age, 17 April 2021.

^[40] SA Act, s11(4).

^[41] Queensland Act, s98.

^[42] Criminal Code Act, s474.29A.

^[43] Victoria Voluntary Assisted Dying Review Board, above note 20.

^[44] Wilmott et al, above note 22.

^[45] Ibid; F Caldwell, ‘Queenslanders trying to access euthanasia scheme could break federal law’, Brisbane Times, 25 May 2021.

^[46] Caldwell, above note 45.

^[47] Victorian Act, ss9(1)(d)(iii), 9(4); WA Act, s16(1)(c)(ii)–(iii); Tasmanian Act, 6(1)(c); SA Act, ss26(1)(d)(iii), 26(4).

^[48] Queensland Act, s10(1)(a)(ii).

^[49] Victoria, Parliamentary Debates, Legislative Council, 16 November 2017, 6098 (Gavin Jennings).

^[50] C Chu, N White and P Stone, ‘Prognostication in palliative care’, Clinical Medicine, Vol. 19, No. 4, 306.

^[51] Victorian Act, s116.