A new beginning for
end of life law

Guiding patients, families, doctors and society
through difficult decisions

At the end of life, there are no easy decisions. The law should provide guidance, so when QUT Professors Ben White and Lindy Willmott found it ailing, they went to work.

Research outcomes led to...
Reforms to end of life law across Australia
education programs to improve doctors' knowledge
A comprehensive legal resource for doctors and the community
Research outcomes led to...
Reforms to end of life law across Australia
education programs to improve doctors' knowledge
A comprehensive legal resource for doctors and the community

Medical decisions now precede 65% of all Australian deaths (Kuhse et al, 1997) which equates to approximately 100,000 deaths annually (ABS, 2018).

These decisions might involve removing life support when there is no longer any hope for recovery, or deciding not to use medication, perform surgery or provide treatment that would do little to help.

These are tough, emotional decisions. Sometimes a person will be so unwell they can't make the decision themselves. When this happens, it may fall to their family to decide.

But Professors White and Willmott’s research into doctors’ legal knowledge exposed some unhealthy gaps.

Their study found that doctors had limited knowledge of the law surrounding end of life decision-making.

It also uncovered some of the reasons why these decisions are so complex in practice. Even if doctors are aware of the law, their own ethics come into play.

“Doctors don’t like to take away hope. But futile treatment can result in harm to the patient, the family, and the treating team,” says Professor Willmott.

If doctors don’t follow the law, it puts them at legal risk. The rights of patients and families are also at risk: they may not receive the treatment they are entitled to, or may not have their refusals of treatment respected.

“Law is a reflection of community values, so it matters – especially on sensitive issues like end of life.”

Professor Ben White

Complexity of the law is a problem for doctors

Professors White and Willmott conducted a comprehensive review of end of life law across Australia. They concluded that the legal framework was confusing, ambiguous and inconsistent.

An example is the law surrounding Advance Care Directives, which allow you to record your wishes about the medical treatment you do or do not want to receive.

The law says Advance Care Directives may not apply in some situations, but those situations vary from state to state.

“It’s not satisfactory in a federation, where people do move around – both patients and doctors,” says Professor Willmott.

Professors White and Willmott’s research has led to reforms to make the law simpler and more consistent.

Their report Rethinking life-sustaining measures: questions for Queensland was one of the triggers for a Queensland Law Reform Commission review. The review made a range of recommendations; some of which have been adopted in Queensland's guardianship legislation.

Parliamentary inquiries about end of life decision-making in Victoria, Western Australia, Queensland and the Australian Capital Territory have also adopted Professor White and Willmott's research in their recommendations to reform State and Territory laws.

Most recently, in March 2020, a Queensland Parliamentary Inquiry recommended the Queensland Government use draft legislation written by Willmott and White as the basis for new voluntary assisted dying legislation in Queensland.

“Recommendation 1: The committee recommends the Queensland Government use the well-considered draft legislation submitted to the inquiry by Professors Lindy Willmott and Ben White as the basis for a legislative scheme for voluntary assisted dying.”

Cutting through the confusion

Professors White and Willmott’s research has prompted a range of new initiatives to better educate and support doctors and other health professionals.

This includes practical resources to help with day-to-day decisions. QUT’s End of Life Law in Australia website is one such resource. It provides health professionals and the community with quick access to legal information that is easy to understand.

“It’s great to be able to direct our staff to a resource that clearly outlines the hierarchy of decision-making when patients are unable to provide consent,” says Dr Jenny Jones, Clinical Ethics Coordinator at Metro South Health, Queensland.

“The resource also helps me make sure I stay up to date, and have the correct understanding of the law.”

State health departments, hospitals and other providers have drawn on Professor White and Willmott's research to develop new education programs to address the gaps in doctors' knowledge, and to develop new end of life policies and guidelines. The result is more clarity for doctors, which in turn means more appropriate care for patients and their families.

“We wanted to empower patients and their families to make decisions, and to understand what they are entitled to do when they or their loved one is at the end of life,” says Professor Willmott.

Professors White and Willmott also lead teams which have developed education programs for doctors, including the first national online training for clinicians on end of life law, and a world-first mandatory training program for Victorian medical practitioners on Victoria's Voluntary Assisted Dying laws.

Timeline to impact

2005
Professors White and Willmott's report Rethinking life-sustaining measures: questions for Queensland is released. It is the first comprehensive critique of Queensland law on withholding and withdrawing life-sustaining treatment.

2006
Queensland Guardianship and Administration Tribunal adopts Professors White and Willmott's new proposed approach to end of life decision-making in its decision Re HG [2006], QGAAT.

2010
Professor White is appointed as a commissioner for the Queensland Law Reform Commission's review of guardianship laws.

20102014
Australian Research Council Linkage grant Withholding and withdrawing life-sustaining medical treatment from adults who lack capacity: the role of law in medical practice is awarded to Professors White, Willmott and collaborators.

2012
Professors White and Willmott's research on Advance Care Directives is cited by the Irish Law Reform Commission. The Commission's recommendations are included in the Irish Advance Healthcare Decisions Bill 2012.

20122014
Australian Research Council Linkage grant Futile treatment at the end of life: legal, policy, sociological and economic perspectives is awarded to Professors Willmott, White and collaborators.

20142017
Australian Research Council Linkage grant Enhancing community knowledge and engagement with law at the end of life is awarded to Professors White, Willmott and collaborators.

2014–2015
Various State health departments publish resources for health professionals, drawing on Professors White and Willmott's research.

2016
QUT's Australian Centre for Health Law Research launches the End of Life Law in Australia website to provide practical information for health professionals and the community.

2018
Western Australia's 2018 Parliamentary Committee report into end of life choices adopts Professors White and Willmott's published values as guiding its decision to permit voluntary assisted dying. Their research and in-person evidence is cited 70 times in the report.

2019
Two new training programs developed by Professor White, Willmott and colleagues are launched: End of Life Law for Clinicians, a national training program to support clinical practice in end of life decision-making, and a mandatory training program for Victorian medical practitioners on the Voluntary Assisted Dying Act 2017 (Vic).

2019
Australian Research Council Future Fellowship grant Better end-of-life care through an optimal, holistic regulatory framework is awarded to Professor White.

2020
Queensland's Parliamentary Committee report into Voluntary Assisted Dying recommends the Queensland Government adopt Professors Willmott and White's draft Voluntary Assisted Dying Bill 2019 as the basis for legislation in Queensland.

The Committee's other report on aged care, end of life and palliative care relies on White and Willmott's research on Advance Health Directives, withholding and withdrawing treatment, and palliative medication in making recommendations for legal and practice reform.

Contact

Professor Ben White
Professor Lindy Willmott

Email: achlr@qut.edu.au
Phone: +61 7 3138 5345
Website: ACHLR
Twitter: @HealthLawQUT

Professor Lindy Willmott and Professor Ben White