A universal language for VAD in Australia would provide clarity and avoid legal issues, says an ethics and biolegality expert at UNSW Law & Justice.
With all states in Australia having passed voluntary assisted dying (VAD) laws, now is the right time for jurisdictions to consider adopting universal legal language so that patients can have timely access to VAD and medical professionals can have clarity, says UNSW Law & Justice’s Marc De Leeuw.
Dr De Leeuw said he welcomed the fact that all states had adopted VAD laws but cautioned 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 said. There also needed to be consensus on the amount of time left before a patient was expected to die before the laws could be enacted.
Each jurisdiction in Australia has adopted different language around VAD. In Queensland, for example, disease must be expected to cause death within 12 months before VAD can be initiated. In other jurisdictions such as NSW, disease must be expected to cause death within six months, unless it is neurodegenerative in which case the time frame is 12 months. The Australian Capital Territory and the Northern Territory do not have VAD laws.
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.
These safeguards reflect international norms and are to help protect vulnerable people. In these circumstances, the dying person also must have decision-making capacity throughout the process.
But this could be problematic, Dr De Leeuw said, because it was 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.
Dying while waiting for voluntary assisted dying
Advocates for the choice to engage in VAD agree that discrepancies in 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 voluntary assisted dying advocacy and support organisation in NSW.
Ms Higson said 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 said.
Ms Higson said the six-month bar for accessing VAD in some jurisdictions meant some people died before the process was 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 said.
Doctors in short supply
Dying with Dignity said a shortage of doctors doing VAD training was 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. Dying with Dignity NSW see this as a challenge that we need to address,” Ms Higson said.
‘If not enough doctors agree to take part in the scheme it will create a burden for those doctors who are willing to help.’
“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.
“[Ideally], a person’s own GP would become the coordinating medical practitioner, but this is not always possible. 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, the selection of the right terminology was also important to encourage support in the public for VAD, Dr De Leeuw said.
Different terms, 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,” Dr De Leeuw said. “That is, do the terms used in NSW or Queensland legally represent the exact same VAD aim and criteria, or not?”
Legal issues and voluntary assisted dying
Dr De Leeuw, who has written on bioethics, said legal issues could arise with the differences in the way VAD laws functioned 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,” Dr De Leeuw said.
“This is to determine the legality of the VAD; the more consistency the law provides, the greater the chance of an equal outcome,” he said.
In Western Australia and Victoria, VAD laws are in operation. In Tasmania, VAD will commence in October, in South Australia and Queensland in January 2023, and NSW in November 2023.
All states have similar processes for someone wishing to access VAD, including that the person must make three separate requests. They also have similar assessment requirements including that two assessments need to be carried out by two, independent medical practitioners. All states require that VAD is applicable to people with incurable medical conditions who have, at most, fewer than 12 months to live.
Dementia and voluntary assisted dying
Dr De Leeuw said it was a positive development that Australian jurisdictions had adopted these laws, given the fact that when dealing with end of life, palliative care alone was often not enough.
“It could be argued that the actual daily reality in hospitals before the changes to laws meant that doctors and nurses were forced to make decisions alongside family members regarding the palliative approach for patients which was not all that far removed from euthanasia,” he said.
He pointed to the fact that palliative care could not be provided to someone with dementia, and therefore options could be limited.
“Even though someone’s physical condition allows life, the person could essentially ‘disappear’ over the course of these degenerative illnesses.”
‘The more consistency the law provides, the greater the chance of an equal outcome.’
Unlike other states, in NSW someone 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.
Dr De Leeuw said this was another reason it would be best practice to have more universal language and criteria around VAD.
“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,” he said.
How VAD laws will best serve the dying
Dying with Dignity’s Ms Higson said the organisation expected that laws would 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,” she said.
“[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.”