We asked people with dementia about voluntary assisted dying. Here’s what they said

What do Australians with dementia think about voluntary assisted dying? Until recently, no researchers had thought to ask.

Our two small studies change that. These are the first to include Australians with dementia in research about voluntary assisted dying.

We found Australians with dementia who are frightened of what’s ahead, and who want a choice in how they live and die.

Not an option

Dementia is a terminal condition, meaning it cannot be cured and is likely to lead to someone’s death. In fact, it’s Australia’s leading cause of death.

People with dementia want to die well but don’t always have a good death. This has led to calls from community, advocacy and professional groups for people with dementia to have greater choice in their end-of-life care, including voluntary assisted dying.

But under Australia’s laws, people with dementia cannot choose voluntary assisted dying as part of their end-of-life care. The main concern relates to people’s capacity to make informed choices about their care as the dementia progresses.

This is unlike other countries, including The Netherlands and Canada, which have special provisions for some people with dementia to choose voluntary assisted dying, with certain safeguards.

Read more: People with dementia aren’t currently eligible for voluntary assisted dying. Should they be?

What we were told

We asked Australians with dementia their thoughts about voluntary assisted dying as an end-of-life care option.

First, we surveyed 36 people to determine their voluntary assisted dying needs and preferences.

The participants were overwhelmingly supportive of Australians with dementia having the option to choose voluntary assisted dying. They stressed the importance of their choices being respected:

I wish to have control over my life and death as far as is possible. (Dolores, 76)

However, most participants believed their choices were not always respected. Instead, they felt their end-of-life care choices were in part influenced by dated assumptions about their capacity to make decisions about their own care:

It is discriminatory to disallow people living with dementia access to assisted dying just because they have dementia. They just need better support to make these decisions. (Harold, 70)

Their experiences of what they perceived as discrimination led the participants to consider voluntary assisted dying as a human right, a right which they believe is currently denied to them:

Having dementia, as I understand it, does not mean that I am unable to make rational decisions. People living with dementia have feelings and should have the right to choose their own time of death through the dignified manner of [voluntary assisted dying]. (Grace, 87)

We then interviewed 12 people with dementia from the survey group to better understand why they so strongly preferred voluntary assisted dying.

Many wanted access as a way to manage their fears about how living with dementia would eventually affect their quality of life.

Their stories showed how they grappled with the uncertainty of what their future held as their condition progressed:

Since I’ve been in care and seeing people that are much more advanced […] there’s no quality of life. What’s the point of them being kept alive? I don’t want that to happen to me. (Clara, 76)

Their fears extended to a possible future where they may experience abuse and poor-quality residential care:

[…] you lose control of your bowels, you lose control of your bladder, and you are totally reliant on somebody else, who may not understand dementia. Who may not care for you. Who may assault you. I’ve been in aged care facilities, and I’ve seen the care that does not occur. No one should face those injustices as well. And we can’t control that, no matter what we do. (Ellen, 55)

Some participants also feared they would be coerced into care they didn’t want.

These people viewed the safeguards meant to protect them from coercion into voluntary assisted dying as a poisoned chalice. They felt these could place them at greater risk of abuse, and a bad death.

We hear reports all the time and I don’t want dreadful things to happen to me. I just want to be able to live a good life. (Elizabeth, 75)

The participants believed this risk to their safety was due to conflicting views of medical, political and religious stakeholders who provide care, and who they say are the dominant voices shaping policy:

People [are] being kept alive simply because someone else wants to keep him alive. And so, I think it’s just the most crazy system you have ever seen. (William, 81)

What’s the take-home message?

These participants show they are capable of weighing in critically and thoughtfully about the risks associated with voluntary assisted dying, and their preferences for end-of-life care.

Australians with dementia need to be at the centre of conversations about voluntary assisted dying, and at the forefront of future research, policy and practice.

These conversations should focus on people’s rights to choose their own end-of-life care, including voluntary assisted dying. We also need to recognise that people with dementia can contribute to these decisions, with support.

Just because we’ve got a label, we’re still people […]. (Clara, 76)

Thanks to Charles Sturt University’s Belinda Cash and Bernadette Moorhead for their contribution to this article and the research it’s based on.

Adrienne Matthys does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.