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.
For almost 40,000 Australians each year, the end of life will come after a decision to stop or forgo treatment.
This could mean removing life support when there is no longer any hope for recovery, or deciding not to use medication that would do little to help.
These are tough, emotional decisions, and the patient is not always able to make them. In many cases, the decision will rest with their family and doctor.
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 directives, which allow you to record your wishes about the medical treatment you do or do not want to receive.
The law says advance 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; many of these are being actively considered to reform the law.
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 practitioners.
State health departments, hospitals and other providers have drawn on the research to develop new education programs to address the gaps in doctors’ knowledge.
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 practitioners 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.”
Professors White and Willmott’s research has also led many organisations 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.
Journey to impact
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.
Professor White is appointed as a commissioner for the Queensland Law Reform Commission's review of guardianship laws.
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.
Professors White and Willmott’s research on advance directives is cited by the Irish Law Reform Commission.
The commission’s recommendations are then included in the Irish Advance Healthcare Decisions Bill 2012.
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.
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.
New South Wales Health and the Victorian Department of Health (with Australian Medical Association Victoria) publish resources for health professionals, drawing on Professors White and Willmott’s research.
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.