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Consistent language on voluntary assisted dying laws needed: UNSW Law & Justice expert

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A universal language for voluntary assisted dying (VAD) in each of Australia’s jurisdictions could help provide clarity and avoid unforeseen legal issues, an ethics and biolegality expert at UNSW Law & Justice, says.

Dr Marc De Leeuw, a senior lecturer at UNSW’s faculty of law and justice, says that such clarity will enable patients to have timely access to VAD, and provide vital clarity for medical professionals.

De Leeuw advocates for the adoption of VAD legalisation in all states and territories across the country, but cautions that slight differences in legal language could create unequal outcomes or public perceptions.

“The definition of what is an ‘irreversible medical condition’, what is ‘incurable’ and what is ‘progressive’: these are all terms that need grappling with”, he says.

VAD is currently legal and accessible in Western Australia and Victoria, and it is set to commence in Tasmania on October 23, 2022; in South Australia and Queensland in January, 2023; and New South Wales in November, 2023.

Meanwhile, the Australian Capital Territory and the Northern Territory do not have VAD laws, but are actively trying to overturn federal laws that have prohibited such legislation for the last 25 years.

All states have similar processes for someone wishing to access VAD, including that the person must make three separate requests, and receive two assessments from two separate, independent doctors.

All states require that VAD is applicable to people with incurable medical conditions who have, at most, fewer than 12 months to live. 

However, each jurisdiction in Australia has adopted different legal language around VAD.

In Queensland, for example, a disease must be expected to cause death within 12 months before VAD can be initiated.

In other jurisdictions, such as NSW, a disease must be expected to cause death within six months, unless it is neurodegenerative, in which case the time frame is 12 months.

In the states where VAD laws are either in operation or going through the legal process to become operational, only the dying individual can request VAD.

In these circumstances, the dying person must also have decision-making capacity throughout the process.

These safeguards reflect international norms and are to help protect vulnerable people, Marc De Leeuw says, but could also be problematic due to the nature of palliative care interventions.

“It is possible that someone may qualify for VAD in every other regard but, at the very end of that process, when they were ready to have a life-ending drug administered, they may be on such strong medication that they could lose decision-making capacity and therefore not meet the requirements of VAD,” he says.

Dr Marc De Leeuw, a UNSW biolegality expert, says that language and terms associated with VAD should be harmonised across the country.

Dying while waiting for voluntary assisted dying

Advocates for the choice to engage in VAD agree that discrepancies on the timeframes for access to VAD in Australia, among a host of other challenges, can lead to people dying in pain before the assisted death is achieved. 

Shayne Higson is the CEO of Dying with Dignity New South Wales, a VAD advocacy and support organisation that has been campaigning for VAD-legalisation for over 50 years.

Higson, whose advocacy is inspired by her mother’s painful end-of-life experience associated with terminal brain cancer, says she would welcome universal legal language with the implementation of VAD laws. 

“In a perfect world, it would probably be easier for all concerned if all the Australian VAD laws shared the same terminology, however, we feel there are more important inconsistencies that perhaps could be rectified before the language,” she says.

Higson says the six-month bar for accessing VAD in some jurisdictions means some people die before the process is resolved.

“This narrower window of opportunity for someone to request VAD and the complex and time-consuming assessment process has resulted in some applicants dying before they access VAD,” she says.

Shayne Higson, Dying with Dignity NSW CEO, says that the six-month prognosis window for accessing VAD may be too narrow for some terminal patients

VAD-accredited doctors in short supply

According to Dying with Dignity NSW, a shortage of doctors undergoing VAD training is restricting the number of doctors available to assess requests for VAD.

“It certainly has an effect on someone being able to access this compassionate, legal, end-of-life option,” Higson says.

“While we support a medical practitioner’s right to conscientiously object to VAD, if not enough doctors agree to take part in the scheme it will create a burden for those doctors who are willing to help, and it will definitely make the process more difficult for the dying individual and their family.

“Dying with Dignity NSW see this as a challenge that we need to address.”

Higson adds that, ideally, a patient’s local GP should become the coordinating medical practitioner, but since this is not always possible, state health departments must work to bridge accessibility gaps.

“Health departments across Australia need to support the doctors who are willing to do the VAD training and participate in the scheme.

“DWD NSW will do everything we can to encourage more doctors to participate for the sake of their dying patients.”

On such a sensitive topic, language is key

As well as the need for consistent and precise language on the application of the laws, De Leeuw says that the selection of the right terminology was also important to encourage public support for VAD.

Different terms, he notes — such as ‘euthanasia’ or ‘medically assisted dying’ — could meet different levels of acceptance among people who were comfortable with one term but uncomfortable with another.

“You could say in the end it’s not about language as such, but what the terms are used to represent,” De Leeuw says.

“That is, do the terms used in New South Wales or Queensland legally represent the exact same VAD aim and criteria, or not?”

Legal issues could arise due to interstate discrepancies

De Leeuw, who has written on bioethics, says that legal issues could arise with the differences in the way VAD laws function across the states.

“For example, in a case where a patient is transferred from one state to another and ends up requesting VAD in the state that he or she was transferred to while having made the original VAD application in the state of residence, a judge might need to compare the terms and aims in both states.

“This is to determine the legality of the VAD; the more consistency the law provides, the greater the chance of an equal outcome.”

Dementia and voluntary assisted dying

De Leeuw says that the issue of VAD in the context of dementia has been a challenging ethical dilemma for policymakers across the globe.

“I’m from the Netherlands originally and in the Netherlands there has been a similar type of law since 2002.

“It was heavily debated around dementia which impacts the notion of capacity.

You must have capacity to decide to go through with assisted dying and yet dementia affects your sense of capacity.

“You become mentally incapacitated but can live for many years in a state that some people would find unacceptable.

“Even though someone’s physical condition allows life, the person could essentially ‘disappear’ over the course of these degenerative illnesses.”

Currently, an Australian person with dementia can’t ask for VAD as a general rule because it’s treated in the same way as two other categories generally not accepted as viable reasons for VAD – mental illness and disability — due to the inability to consciously consent.

Furthermore, at present, a person cannot request voluntary assisted dying in an advance care directive.

Higson says that her organisation expects that the Australian states’ VAD laws will eventually come into sync with one another.

“[All of these laws have] mandated review of the legislation between two and five years after each law was enacted, so Dying with Dignity advocates predict that consistency across all jurisdictions in areas such as eligibility criteria, access procedures, assessment requirements etc., as well as language, will happen organically.

“[But] having VAD laws available is so important because although Australia provides some of the best palliative care in the world, not all end-of-life suffering can be alleviated.

“Dying individuals want the choice to end their own suffering if it becomes unbearable, and simply having that choice creates a palliative effect, even if a patient never uses it.”

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