Euthanasia law architect Marshall Perron demands right to die for teens, non-terminally ill

A former Northern Territory chief minister hopes the ACT’s appetite for social reform will drive expansion of voluntary assisted dying access.

Euthanasia rights advocate Marshal Perron at his home in Buderim. Photo Lachie Millard

The architect of the world’s first right-to-die law, former Northern Territory chief minister Marshall Perron, is urging the ACT to allow under-18s and non-terminal ­patients access to voluntary assisted dying when it becomes the seventh Australian jurisdiction to embrace the measure.

Mr Perron hopes the ACT’s appetite for social change will unleash the next wave of VAD reform even though the rollout through the states is not complete.

The 81-year-old told The Weekend Australian: “I urge looking beyond the restrictive, complex laws passed in the Australian states and recommend a regime which responds more compassionately to the wishes of a competent, suffering individual.

“The state models bear the scars of political compromise where some legislators gave their support with trepidation, but only after they had made the process more torturous.”

A discussion paper released in February by the ACT government explores a possibility “mature minors” would be allowed to legally end their lives provided they met the core eligibility requirements for VAD of being near death from an incurable illness or medical condition, while enduring intolerable and non-relievable suffering.

The minimum age is 18 in the five states where assisted dying is now in force, with NSW due to bring its program into operation on November 28.

The ACT, set to legislate by the end of the year, has sought public input into whether under-18s “with the maturity and capacity” to weigh VAD should be covered.

The discussion paper says: “Young people under 18 are presumed to progressively gain evolving decision-making capacities. Some … may develop decision-making capacity earlier than others. In the ACT, this is reflected in how a health professional assesses whether a person is a ‘mature minor’ to consent to treatment in some healthcare contexts.

“For a matter as complex and important as voluntary assisted dying, a five-year-old could not have decision-making capacity, but a late teenager may have … depending on all circumstances.”

On the option of dropping the life expectancy stipulation of six-12 months applied by states, it says: “In some countries, eligibility criteria include a requirement that a person is diagnosed with a medical condition that will result in death, but without a prescribed time­frame for expected death. Research suggests it is unlikely more people would be eligible for VAD under such a model but they would become eligible earlier in the disease progression.”

In a submission in March to the ACT’s Labor government, Mr Perron called for the legislating of a “safe regime” to permit VAD for incurable but not terminal conditions and to provide an advance directive process in the event of lost competence, such as with late-stage dementia. The Canadian innovation of a “waiver of final consent” for patients deemed by their doctor to be at risk of losing competency after being accepted for VAD, but prior to administration of the lethal dose, was a “logical first step,” he wrote.

Mr Perron said the “mature minor” concept should be developed to allow 16 and 17-year-olds access, but with additional safeguards. These might include parental consent and mental health checks. “Most of our political representatives have lagged way behind the will of their constituents on VAD and despite the progress in recent years, they still do,” he said. “An unnecessary timidity exists, resulting in overly cautious laws in every state.”

The pathfinding law Mr Perron brought in as NT chief minister in 1995 had barely come into effect when then prime minister John Howard vetoed it. Federal parliament overturned the ban in December with the backing of Anthony Albanese’s ALP team.

Anticipating a backlash against his proposals from the churches and other VAD critics, Mr Perron acknowledged that the law he sponsored 27 years ago did restrict eligibility to adults with a terminal illness and contained provisions “I would not support today”.

“No doubt opponents will yell, ‘slippery slope,’” he said. “In fact, progress on this subject is a hard, uphill slog.

Acknowledging his “substantial contributions”, ACT Human Rights Minister Tara Cheyne said the territory aimed to create safeguards that were “not unduly burdensome” and protect human rights with a VAD model supported by health professionals and the community.