The legal pioneers behind end-of-life law in Australia

Early on in her medical law career, Professor Lindy Willmott experienced a distressing family event.

Her grandmother, living in residential aged care and at the end of her life, was in pain and suffering without adequate pain relief.

The family was told by a nurse that she was unable to be given more pain relief, and it was only after a doctor intervened that her grandmother was finally made comfortable and, ultimately, passed away peacefully.

Professor Willmott, of QUT’s Faculty of Business and Law and now one of Australia’s foremost experts in end-of-life health law, says the experience, before Voluntary Assisted Dying legislation was introduced, “piqued my interest in death and dying’’.

She has now worked for more than 20 years specialising in end-of-life law, working closely with her QUT colleague, Professor Ben White. They are both recognised as Australia’s leading end-of-life law experts, with their evidence-based research playing a key role in voluntary assisted dying (VAD) law reform in all Australian states.

In Queensland, which introduced VAD laws in 2021, their research was adopted at each stage of the state’s law reform process. The ‘White and Willmott model’ was referred to more than 450 times in the Queensland Law Reform Commission Report tasked with developing VAD legislation.

Now legislated in all Australian states, VAD laws are accessible by 98 percent of the Australian population.

“We work in an area where it’s sometimes hard to show an impact,’’ Professor Willmott said.

“In medicine, for example, you find a vaccine or a treatment and there’s an immediate impact. It’s harder to demonstrate influence and impact in our field.

“But this work is a concrete example that we made a difference. A whole lot of people – 98 percent of the population – will have a choice at the end of life, if they satisfy the eligibility criteria.

“They can choose to make their death better. And that’s really nice to know you’ve had a small role in getting that legislation up.’’

Professors Willmott and White met as lecturer-student in the mid-1990s when Willmott was White’s lecturer in his undergraduate law studies at QUT.

Graduating in 1996 with first-class honours and the University Medal in Law, Professor White was awarded a Rhodes Scholarship to study at Oxford University, England.

He returned to Australia in 2002, applying (successfully) for a job as associate lecturer at QUT, where Professor Willmott was on the selection panel.

Professor White’s interest in medical law was sparked from his wife’s job as a nurse, with their discussions “centred on where health and law intersect and sometimes collide’’.

“We would talk about what went well, what didn’t, and I guess it got me thinking about how law could have a role to make things better,’’ Professor White said.

“The law is there to make sure patients have a voice. And that's really what got me interested.’’

With a mutual interest in health law, Professors Willmott and White began working together, starting with a 2002 survey of Queensland politicians about voluntary assisted dying.

In 2012, they established the Australian Centre for Health Law Research (ACHLR) at QUT, collaborating with government, health systems, hospitals, and researchers internationally.

The centre now has a team of about 15 researchers and PhD students working on end-of-life law, as well as other postdoctoral students, research fellows and academics working in health law who are all “building capacity for the next generation’’ and a legacy for the work to continue. (“Not that we’re talking about legacies yet,’’ Professor Willmott says.)

The centre has received more than $70 million in grant funding, published over 800 articles or book chapters, co-hosted eight international conferences and has a podcast series, Learn Me Right.

Professors Willmott and White and colleagues have also authored the End of Life Law in Australia website and developed a training program End of Life Law for Clinicians (ELLC) funded by the Commonwealth Government.

Professor Willmott says their work operates on different levels - getting the law right, enabling clinicians to understand the law, and for the community to know what they’re entitled to ask for themselves or for their family.

As VAD laws have been rolled out across Australia – first in Victoria in 2017, followed by Western Australia, Tasmania, South Australia, Queensland, and New South Wales (with the ACT’s VAD bill tabled in parliament in November) – Professors Willmott and White’s attention has turned to examining if Australian VAD laws are working safely and as intended.

Professor White has an Australian Research Council research grant for a three-country study, called Optimal Regulation of Voluntary Assisted Dying, learning from the Canadian and Belgian VAD experience and how Australia can possibly do better.

So far, the study has seen more than 140 interviews undertaken with patients, family caregivers, doctors, nurses, government officials and health organisations to fully understand how VAD is working in Australia.

There are also more conversations to be had regarding dementia patients, who currently don’t satisfy the strict eligibility criteria, accessing VAD.

“It’s part of the conversation within Australia now, the extent to which VAD could be accessed by people with dementia. We’re interested in that topic,’’ Professor Willmott said.

“The criteria is such that you need to be likely to die within 12 months. So when a dementia patient has capacity, they are unlikely to die within that timeframe. And by the time they do have only 12 months left to live, they don’t have the capacity. It’s very tricky.’’

Advance health directives for voluntary assisted dying pose “practical, legal, clinical and ethical challenge’’ and is an area, Professor Willmott says, that “definitely has some more work to be done’’.

Over the years, Professors Willmott and White’s working relationship has turned in to a “genuine friendship’’ with their families regularly socialising.

“For me, collaboration is easy when you have a genuine friendship and trust in another person. Our families are very close and know each other very well ,’’ Professor Willmott said.

“Collaboration is a two-way street. Ben and I have different strengths. Ben is younger so has taught me an incredible amount and one of his great strengths is translation of research into practical resources.’’

Professor White said, as well as being a “brilliant mentor’’, Professor Willmott has also taught him the value of collegiality and the “joy of collaboration’’.

“We are both committed to making things better,’’ Professor White said.

“Lindy has taught me how together we are stronger and when you work collaboratively with someone, it’s more enjoyable and it has more of an impact.’’

In 2021, on the steps of Queensland’s Parliament House after the VAD laws were passed, Professors Willmott and White were approached by a voluntary assisted dying advocate who said: “A lot of people in Queensland who don’t even know you will be very grateful for the work you’ve done’’.

To most of the millions of everyday Australians who, if eligible, now have a choice of end-of-life options, Professors Willmott and White likely remain unknown.

And while anonymity sits comfortably with them, this small gesture of gratitude is remembered.

“That was nice,’’ Professor Willmott admitted.

“It was acknowledging we had a part to play. And that was kind of enough.’’

Professor White said, in some ways, he has found it more satisfying to know he has helped people who will never know who he is.

“In this, we are kind of irrelevant,’’ Professor White said.

“What is important is that there’s this law which now provides choice. Not everyone will use it, but they know this could be an option available to them.

“The best part of the job is making a difference, making things better. And it’s actually a real privilege.

“Our research has helped make end-of-life more compassionate and kinder and, to me, that’s a pretty satisfying thing.’’