More and more countries are legalising voluntary assisted dying. This lets a doctor, or sometimes a nurse practitioner, give life-ending medication to an eligible person who requests it.

As of 2023, 282 million people lived in regions where voluntary assisted dying is legal. Jurisdictions such as the Netherlands, Belgium and Oregon have had these laws in place for decades. Other countries, including Canada, Spain, New Zealand and Australia, have passed reforms more recently.

The trend towards legalisation is continuing. Several countries are actively considering this issue, with strong public support. In November, the United Kingdom’s House of Commons supported an assisted dying bill for the first time, after years of failed attempts.

Debates about voluntary assisted dying are often highly polarised. Understanding the factors driving assisted dying is essential for evidence-based debates and for improving care for people with serious conditions.

In a recent study, we examined data from people accessing voluntary assisted dying in 20 jurisdictions around the world. In particular we looked at what diseases they had.

What Are The Rules?

The legal rules for voluntary assisted dying vary by country (and what it’s called differs too).

In countries including Australia and New Zealand, voluntary assisted dying is available only to people who are terminally ill. For example, in Australia a person must have an advanced, progressive condition that is generally expected to cause death within a certain time frame (6 to 12 months, depending on the state).

Countries such as the Netherlands, Spain and Canada also allow access for eligible people suffering from non-terminal conditions. Canada allows voluntary assisted dying for those who are suffering intolerably from “grievous and irremediable” conditions. While a person’s condition doesn’t have to be terminal, extra safeguards apply when a person’s natural death is not “reasonably foreseeable”.

That said, voluntary assisted dying for non-terminal conditions remains rare. In 2023, 95.9% of people who accessed voluntary assisted dying in Canada had a reasonably foreseeable natural death.

Who can administer the medication also varies. In the United States and Switzerland, people must take the medication themselves, usually by swallowing a liquid (known as “self-administration”).

In Québec, Canada, physicians or nurse practitioners must administer it, which usually happens intravenously. In several jurisdictions, including Australia, both self-administration and practitioner administration are available.

Our Research

With an international team of researchers, we looked at the role disease plays in voluntary assisted dying. We analysed publicly available data from 20 jurisdictions in eight countries between 1999 and 2023.

Overall, most people who accessed voluntary assisted dying had cancer (66.5% of cases). Neurological diseases were the second most common (8.1%), followed by heart (6.8%) and lung (4.9%) conditions.

We also looked at what proportion of people with each disease accessed voluntary assisted dying versus dying by other means. Even though voluntary assisted dying rates and eligibility criteria vary by location, the rates for specific diseases were surprisingly consistent across regions and time periods.

For example, people with amyotrophic lateral sclerosis (ALS) – a rare, progressive, fatal disease that damages the brain and spinal cord – had the highest rate of voluntary assisted dying. People with ALS accessed voluntary assisted dying at a rate nearly seven times higher than people with cancer.

Meanwhile, cancer patients were four times more likely to access voluntary assisted dying than those with lung disease, and ten times more likely than those with heart disease.

What Does This Tell Us?

Cancer and ALS, which appear to be the main reasons people access voluntary assisted dying, have very little in common. But both often cause a more rapid decline in health and a greater perceived loss of dignity than other conditions.

Our findings align with other research that shows people usually request voluntary assisted dying because they have lost autonomy, dignity, or the ability to do things that are meaningful to them.

Critics of voluntary assisted dying worry people might be pressured into choosing this option. One of the concerns is that people will opt for assisted dying because of a lack of palliative care. This refers to specialised care and treatment that helps people with serious life-limiting conditions live comfortably and fully.

Interestingly, while people with lung or heart conditions use palliative care less than those with cancer, our study found they are less likely to access voluntary assisted dying. If voluntary assisted dying was driven by poor access to services, we’d expect higher rates for heart and lung disease.

Similarly, recent data from Canada and Australia show most people who request voluntary assisted dying receive palliative care.

Where To From Here?

Our study doesn’t rule out that a range of factors, including poor access to services, may influence some cases. But it helps clarify common misconceptions about what drives voluntary assisted dying.

Further research should look at why cancer and ALS make up the largest proportion of cases. If voluntary assisted dying is primarily about swift decline and loss of dignity, we must focus on new ways to support patients facing these challenges.

And while voluntary assisted dying can promote autonomy and compassion, allowing people who are suffering to choose when and how they die, our findings don’t diminish the importance of protecting vulnerable people.

Robust safeguards to ensure decisions are voluntary and only eligible people have access, as well as high-quality palliative and supportive care, are essential in any voluntary assisted dying framework.

This article was developed with input from Brandon Heidinger, a medical student at the University of Western Ontario.

(Authors: Eliana Close, Senior Research Fellow, Australian Centre for Health Law Research, Queensland University of Technology and James Downar, Head and Professor, Division of Palliative Care, Department of Medicine, L’Université d’Ottawa/University of Ottawa)

(Disclosure Statement: Eliana Close has received funding from the Commonwealth government for research and training about the law, policy and practice relating to end-of-life care (Australian Department of Health, End of Life Law for Clinicians). In relation to voluntary assisted dying, she is employed on an Australian Research Council Future Fellowship project funded by the Australian government (Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying, Chief Investigator, Professor Ben White). She has also been employed on projects funded by the Victorian, Western Australian, and Queensland governments to design and provide the legislatively mandated training for health practitioners involved in voluntary assisted dying in those states. James Downar has received consulting fees from Joule, Inc. to develop educational material relevant to Medical Assistance in Dying. He is a former unpaid chair of the Clinical Advisory Council for Dying with Dignity Canada, a group advocating for the legalization of Medical Assistance in Dying in Canada)

This article is republished from The Conversation under a Creative Commons license. Read the original article.
 

Queensland, Australia:

Dementia is the second leading cause of death for Australians aged over 65. More than 421,000 Australians currently live with dementia and this figure is expected to almost double in the next 30 years.

There is ongoing public discussion about whether dementia should be a qualifying illness under Australian voluntary assisted dying laws. Voluntary assisted dying is now lawful in all six states, but is not available for a person living with dementia.

The Australian Capital Territory has begun debating its voluntary assisted dying bill in parliament but the government has ruled out access for dementia. Its view is that a person should retain decision-making capacity throughout the process. But the bill includes a requirement to revisit the issue in three years.

The Northern Territory is also considering reform and has invited views on access to voluntary assisted dying for dementia.

Several public figures have also entered the debate. Most recently, former Australian Chief Scientist, Ian Chubb, called for the law to be widened to allow access.

Others argue permitting voluntary assisted dying for dementia would present unacceptable risks to this vulnerable group.

Australian laws exclude access for dementia

Current Australian voluntary assisted dying laws exclude access for people who seek to qualify because they have dementia.

In New South Wales, the law specifically states this.

In the other states, this occurs through a combination of the eligibility criteria: a person whose dementia is so advanced that they are likely to die within the 12 month timeframe would be highly unlikely to retain the necessary decision-making capacity to request voluntary assisted dying.

This does not mean people who have dementia cannot access voluntary assisted dying if they also have a terminal illness. For example, a person who retains decision-making capacity in the early stages of Alzheimer’s disease with terminal cancer may access voluntary assisted dying.

What happens internationally?

Voluntary assisted dying laws in some other countries allow access for people living with dementia.

One mechanism, used in the Netherlands, is through advance directives or advance requests. This means a person can specify in advance the conditions under which they would want to have voluntary assisted dying when they no longer have decision-making capacity. This approach depends on the person’s family identifying when those conditions have been satisfied, generally in consultation with the person’s doctor.

Another approach to accessing voluntary assisted dying is to allow a person with dementia to choose to access it while they still have capacity. This involves regularly assessing capacity so that just before the person is predicted to lose the ability to make a decision about voluntary assisted dying, they can seek assistance to die. In Canada, this has been referred to as the “ten minutes to midnight” approach.

But these approaches have challenges

International experience reveals these approaches have limitations. For advance directives, it can be difficult to specify the conditions for activating the advance directive accurately. It also requires a family member to initiate this with the doctor. Evidence also shows doctors are reluctant to act on advance directives.

Particularly challenging are scenarios where a person with dementia who requested voluntary assisted dying in an advance directive later appears happy and content, or no longer expresses a desire to access voluntary assisted dying.

Allowing access for people with dementia who retain decision-making capacity also has practical problems. Despite regular assessments, a person may lose capacity in between them, meaning they miss the window before midnight to choose voluntary assisted dying. These capacity assessments can also be very complex.

Also, under this approach, a person is required to make such a decision at an early stage in their illness and may lose years of otherwise enjoyable life.

Some also argue that regardless of the approach taken, allowing access to voluntary assisted dying would involve unacceptable risks to a vulnerable group.

More thought is needed before changing our laws

There is public demand to allow access to voluntary assisted dying for dementia in Australia. The mandatory reviews of voluntary assisted dying legislation present an opportunity to consider such reform. These reviews generally happen after three to five years, and in some states they will occur regularly.

The scope of these reviews can vary and sometimes governments may not wish to consider changes to the legislation. But the Queensland review “must include a review of the eligibility criteria”. And the ACT bill requires the review to consider “advanced care planning”.

Both reviews would require consideration of who is able to access voluntary assisted dying, which opens the door for people living with dementia. This is particularly so for the ACT review, as advance care planning means allowing people to request voluntary assisted dying in the future when they have lost capacity.

This is a complex issue, and more thinking is needed about whether this public desire for voluntary assisted dying for dementia should be implemented. And, if so, how the practice could occur safely, and in a way that is acceptable to the health professionals who will be asked to provide it.

This will require a careful review of existing international models and their practical implementation as well as what would be feasible and appropriate in Australia.

Any future law reform should be evidence-based and draw on the views of people living with dementia, their family caregivers, and the health professionals who would be relied on to support these decisions.

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(Authors:Ben White, Professor of End-of-Life Law and Regulation, Australian Centre for Health Law Research, Queensland University of Technology; Casey Haining, Research Fellow, Australian Centre for Health Law Research, Queensland University of Technology; Lindy Willmott, Professor of Law, Australian Centre for Health Law Research, Queensland University of Technology, Queensland University of Technology, and Rachel Feeney, Postdoctoral research fellow, Queensland University of Technology)

(Disclosure Statement: Ben White has received funding from the Australian Research Council, the National Health and Medical Research Council, and Commonwealth and state governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) has been engaged by the Victorian, Western Australian and Queensland governments to design and provide the legislatively mandated training for health practitioners involved in voluntary assisted dying in those states. He (with Lindy Willmott) has also developed a model bill for voluntary assisted dying for parliaments to consider. He is a sessional member of the Queensland Civil and Administrative Tribunal, which has jurisdiction for some aspects of this state’s voluntary assisted dying legislation. Ben is a recipient of an Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian government.

Casey is a research fellow at the Australian Centre for Health Law Research. She has been employed on multiple projects as a research fellow, including the Australian Research Council Future Fellowship (project number FT190100410: Enhancing End-of-Life Decision-Making: Optimal Regulation of Voluntary Assisted Dying) funded by the Australian Government and the Western Australian Government’s Review of the Voluntary Assisted Dying Act 2019. She was also previously engaged as a legal writer for the Voluntary Assisted Dying Training in Queensland.

Lindy Willmott receives or has received funding from the Australian Research Council, the National Health and Medical Research Council and Commonwealth and state governments for research and training about the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) has been engaged by the Victorian, Western Australian and Queensland governments to design and provide the legislatively mandated training for health practitioners involved in voluntary assisted dying in those states. She (with Ben White) has also developed a model bill for voluntary assisted dying for parliaments to consider. Lindy Willmott is also a member of the Queensland Voluntary Assisted Dying Review Board, but writes this piece in her capacity as an academic researcher. She is a former board member of Palliative Care Australia.

Rachel is a postdoctoral research fellow at the Australian Centre for Health Law Research. She is also employed on End of Life Law for Clinicians, a training program for clinicians about end of life law, funded by the Commonwealth Government. Rachel was previously engaged as a clinical consultant for the Voluntary Assisted Dying Training Education Module for Healthcare Workers in Queensland.)

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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