People with dementia are not eligible for voluntary assisted death. Should they be?

Queensland, Australia:

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

There is a continuous audience discussion about whether dementia should be a qualifying illness under Australian voluntary assisted dying laws. Voluntary assisted death is now legal in all six statesbut it is not available to people living with dementia.

The Australian Capital Territory has began to debate his voluntary assisted dying bill in parliament, but the government discarded dementia access. His opinion is that a person must maintain decision-making capacity throughout the entire process. But the bill includes a requirement that revisit the subject In three years.

The Northern Territory is also considering reforming and invited views on access to voluntary assisted death due to dementia.

Several public figures also entered the debate. More recently, former Australian chief scientist Ian Chubb asked for the law to be expanded to allow access.

Others to discuss allowing voluntary dementia-assisted death would present unacceptable risks for this vulnerable group.

Australian laws exclude access for dementia

Australia’s current laws on voluntary assisted dying delete access for people looking to qualify because they have dementia.

In New South Wales, the the law specifically states that.

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

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

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 that a person can specify in advance the conditions under which they would like to have a voluntary assisted death when they no longer have decision-making capacity. This approach relies on the person’s family identifying when these conditions have been met, usually 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 expected to lose the capacity to make a decision about voluntary assisted death, they can seek assistance in dying. In Canada, this has been referred to as “ten minutes to midnight” approach.

But these approaches have challenges

International experience reveals that these approaches have limitations. For advance directives, it can be difficult to precisely specify the conditions for advance directive activation. It also requires a family member to initiate this with the doctor. Evidence also shows that doctors are reluctant to act in accordance with 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 presents practical problems. Despite regular assessments, a person may lose capacity between them, meaning they miss the pre-midnight window to choose voluntary assisted death. These capacity assessments can also be very complex.

Furthermore, under this approach, a person is forced to make such a decision at an early stage of their illness and may lose years of life that would otherwise be enjoyable.

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

More reflection is needed before changing our laws

There is public demand to enable access to voluntary dementia-assisted dying in Australia. Mandatory revisions to legislation on voluntary assisted death present an opportunity consider such reform. These reviews usually 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 want to consider changes to legislation. But the Queensland review “must include a review of eligibility criteria”. And the ACT bill requires review to consider “advanced care planning”.

Both revisions would require consideration of who can access voluntary assisted dying, which opens the door for people living with dementia. This is particularly true for the ACT review, as advance care planning means allowing people to request voluntary assisted death in the future when they lose capacity.

This is a complex issue and more reflection is needed on whether this public desire for voluntary dementia-assisted death should be implemented. And, if so, how the practice can occur in a safe and acceptable way for the health professionals who will be asked to carry it out.

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 legislative reform must be evidence-based and draw on the views of people living with dementia, their family carers and healthcare professionals who would be trusted to support these decisions.

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(Authors:Ben WhiteProfessor of End-of-Life Legislation and Regulation, Australian Health Law Research Center, Queensland University of Technology; Casey HainingResearcher, Australian Health Law Research Center, Queensland University of Technology; Lindy WillmottProfessor of Law, Australian Health Law Research Centre, Queensland University of Technology, Queensland University of TechnologyIt is Rachel FeneyPostdoctoral researcher, 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 on the law, policy and practice relating to end-of-life care. In relation to voluntary assisted dying, he (with colleagues) was commissioned by the governments of Victoria, Western Australia and Queensland to design and deliver the training required by law for health professionals involved in voluntary assisted dying in those states. He (with Lindy Willmott) also developed a model bill on voluntary assisted dying for parliaments’ consideration. He is a member of the Civil and Administrative Tribunal of Queensland, which has jurisdiction over some aspects of that state’s voluntary assisted dying legislation. Ben has been awarded an Australian Research Council Future Grant (project number FT190100410: Improving end-of-life decision-making: optimal regulation of voluntary assisted dying) funded by the Australian Government.

Casey is a researcher at the Australian Health Law Research Center. She has worked on several projects as a researcher, including the Australian Research Council Future Fellowship (project number FT190100410: Improving end-of-life decision-making: optimal regulation of voluntary assisted dying) funded by the Australian Government and Western Australia. Government review of the Voluntary Assisted Dying Act 2019. She also previously worked 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 on laws, policies and practices relating to end-of-life care. In relation to voluntary assisted dying, she (with colleagues) was commissioned by the governments of Victoria, Western Australia and Queensland to design and deliver the training required by law for health professionals involved in voluntary assisted dying in those states. She (with Ben White) also developed a model bill on voluntary assisted dying for parliaments’ consideration. Lindy Willmott is also a member of the Queensland Voluntary Assisted Dying Review Board, but writes this article in her capacity as an academic researcher. She is a former board member of Palliative Care Australia.

Rachel is a postdoctoral researcher at the Australian Center for Health Law Research. She also works on End of Life Law for Clinicians, a training program for doctors on end-of-life law, funded by the Commonwealth Government. Rachel previously worked as a clinical consultant for the Voluntary Assisted Dying Training Educational Module for Health Professionals in Queensland.)

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