What you need to navigate voluntary assisted dying

EVERY Australian state now has a voluntary assisted dying (VAD) Act, but the biggest block to access for eligible patients remains the number of doctors willing and able to undertake the training needed to help a patient through the process.

In Victoria, where the Act came into effect on 19 June 2019, 511 doctors had registered for the online training by 30 June 2021, with 234 completing training and 185 actively involved in at least one case as either the coordinating or consulting medical practitioner. Patients completing the VAD process numbered 331 by that date, with 282 self-administrating and 49 being assisted by a physician.

In Western Australia, where the law came into effect on 1 July 2021, in the first 4 months (according to information presented in the WA Parliament) 169 practitioners registered to access and undertake the training, with 43 completing the course. Fifty patients had completed the VAD process in that time period.

Professor Ben White, Chair of End-of-Life Law and Regulation at the Queensland University of Technology, told InSight+ that the biggest challenge remains having sufficient numbers of doctors trained.

“Not only that, they also need to be in the right locations, because, of course, it’s no good if you’ve got all these trained doctors concentrated in one metropolitan area, especially in places like WA,” he said.

One restriction in all the states' systems is a prohibition on the use of telehealth as a means of consulting about VAD. Consultations must be face-to-face.

Speaking at a Royal Australian College of General Practitioners’ GP19 conference expert panel after the implementation of the Victorian legislation, GP Dr Horst Herb said rural access was something that would need review in the future.

“You can’t deny [VAD] to people who don’t have access,” he said.

“It’s difficult to engage other doctors in the process. Often these are one-doctor towns and legislation prohibits teleconferencing. I can’t see any other way [to help] other than increasing resources or allowing telemedicine.”

Professor White said the barriers to doctors training were multifactorial.

“For some it’s an issue of conscientious objection and all states' legislation is very clear about respecting that,” he said.

“For others, I suspect there is a cohort of doctors who might, in principle, approve of VAD but have not yet had cause to go down that path – they haven’t had a patient who has wanted to pursue it.”

The mandatory training requires a balancing act, said Professor White, whose group provides this training for doctors in Victoria, Western Australia and Queensland.

“Like everything in the medical system, you want to make sure it is safe and accessible,” he said.

“We have to have the confidence that every doctor who provides VAD has been through and accredited at a particular level. But at the same time, that requires about 6–8 hours of a busy practitioner’s time. That can be a challenge for folks who have a busy clinical load.”

Training is free, and involves – at least in WA, Queensland and Victoria – a stand-alone module on self-care for doctors involved in VAD.

How to get training in VAD

In Victoria, training involves a three-step process including a 6-hour online course, which must be registered for 2 days before completion to allow time for an identification check and verification.

The online course is available here.

Once training is completed, the practitioner must register for the voluntary assisted dying portal, available through Safer Care Victoria. This portal is used to apply for permits for VAD medication.

The practitioner should then contact VAD care navigators in their area, via vadcarenavigator@petermac.org or (03) 8559 5823.

In Western Australia, interested practitioners must first register with the Voluntary Assisted Dying Information Management System. This portal provides access to training, as well as forms and processes for use once training is completed.

You must provide relevant identification documents and meet eligibility requirements.

The state Department of Health VAD website contains a full list of resources and frequently asked questions.

Queensland, South Australia and Tasmania are now at various stages of an 18-month implementation period in which training and workforce issues will be worked through and infrastructure created.

“There have been lessons learned [from Victoria] along the way,” said Professor White.

“One is to make sure there are sufficient trained doctors and to make sure the training is done early.

“Then efforts must be made to encourage cohorts of doctors, so there is a trained workforce ready when the law comes into effect.

“The second issue is that the VAD care navigators are absolutely critical to the effective functioning of the system.”

VAD care navigators are “a point of contact for the community, health practitioners and health services across Victoria who seek information about or assistance with VAD”, according to the Victorian Department of Health.

“Care navigators can work closely with the person, their carers, family and friends, medical practitioners and healthcare teams to tailor support that meets the needs of the person. For example, they may assist with identifying appropriate service referral pathways and connecting people to health practitioners and services that best meet their specific needs and goals of care.”

In Victoria, the care navigator network is hosted at the Peter MacCallum Cancer Centre and can be contacted at (03) 8559 5823, 0436 848 344 or by email vadcarenavigator@petermac.org.

In WA, information on the navigator service can be found here, and can be contacted at VADcarenavigator@health.wa.gov.au or (08) 9431 2755.

Each state’s VAD legislation differs slightly, although the Victorian Act has been used as the basis for all subsequent law.

Eligibility differences between states

Victoria:

• A person must have an incurable, advanced and progressive disease, illness or medical condition, and must be experiencing intolerable suffering.
• The condition must be assessed by two medical practitioners to be expected to cause death within 6 months (an exception exists for a person with a neurodegenerative condition, where instead the condition must be expected to cause death within 12 months).
• A person must be over the age of 18 years and have lived in Victoria for at least 12 months and have decision-making capacity.
• Though mental illness or disability are not grounds for access, people who meet all other criteria and who have a disability or mental illness will not be denied access to assisted dying.

Western Australia:

• An eligible person would have to be terminally ill with a condition that is causing intolerable suffering and is likely to cause death within 6 months, or 12 months for a neurodegenerative condition.
• The person would have to make two verbal requests and one written request, with eligibility assessed by two independent doctors.
  • Self-administration of the VAD medication is then permitted, although in a departure from the Victorian system, a patient has more flexibility to choose a medical practitioner to administer the drug.

Queensland:

• The patient has an eligible condition that is advanced and progressive, which is likely to cause death within the subsequent 12 months.
• The patient is capable of making a decision with sound mind.
• The patient is acting voluntarily and without coercion.
• The patient is at least 18 years old.
• The patient is a resident of Australia and has lived in Queensland for at least 12 months.

South Australia:

• It mirrors most of the provisions of the Victorian law, but also allows some health facilities to conscientiously object from participating in the scheme, provided they transfer patients to a place where they can access the scheme.
• Residents in aged care and retirement villages can also access the scheme in their own homes or units.

Tasmania:

• A person must be at least 18 years of age, have decision-making capacity, be acting voluntarily and be suffering intolerably from a medical condition that is advanced, incurable, irreversible and will cause the person’s death in the next 6 months, or 12 months for neurodegenerative disorders.
• The person must also be an Australian citizen or have resided in the country for at least 3 continuous years, and for at least 12 months in Tasmania immediately before making their first request.
• Three separate requests must be made to access the scheme, each of which comes with progressively more stringent checks and balances.

New South Wales:

• A person must have a terminal illness that will result in death within 6 months, or a neurodegenerative condition that will result in death within 12 months, and their suffering cannot be tolerably relieved.
• This must be assessed by two independent doctors.
• The person may then make a written request declaring their intention to end their life, which must be witnessed by two people and then be submitted to the Board.
• A final request must be made 5 days later and a review done by the first doctor, who can then apply to the Voluntary Assisted Dying Board to allow access to a substance to end their patient’s life.
• The person can choose to administer the relevant substance themselves or have a health practitioner do it.

One group universally ineligible is patients diagnosed with dementia.

“NSW has a specific exclusion on accessing voluntary assisted dying for dementia,” said Professor White. “But in all the other states and territories, the requirement for advanced and progressive illness, but also simultaneously retaining capacity, in practice, excludes people with dementia.

“I’d be surprised if we see much change to the law in the foreseeable future.

“There were 40 different attempts to change the law in Australia, all unsuccessful until finally one state passed, and others have mirrored, this very narrow, very conservative, very highly regulated model.

“I don’t see an appetite in Parliaments to expand eligibility criteria. There are required legislative reviews in all the states after a period of time, and I anticipate they would look at where barriers and burdens are,” he said.

One difference between the legislation passed in the first three states – Victoria, WA and Tasmania – and that passed in SA, NSW and Queensland is where patients can choose to die.

“The first three to pass laws have not legislated to deal with institutional objections [to VAD happening on their premises],” said Professor White.

“The later three states have all recognised that this is an important issue, and it is a potential barrier to access. There are models in the legislation which effectively represent a compromise model, trying to respect the institution’s objection, but also making sure the eligible individual doesn’t miss out on VAD because of where they happen to be.”

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