A good death is our right – consumers call for Voluntary Assisted Dying access

Media Release

Sunday 28 May 2017

Alzheimer’s Australia Vic today stated that people living with dementia should not be excluded from having the right to choose a dignified death if Voluntary Assisted Dying is to be legislated in Victoria.

Leanne Wenig, Acting CEO Alzheimer’s Australia Vic said if this legislation is passed, excluding people living with dementia from being able to lawfully seek physician-assisted death will deny them the right to make their own choices.

“Many people living with dementia have the capacity to make competent, informed and considered decisions about aspects of their life.

“Consumers have told us they would like to see eligibility defined in a way that does not discriminate against people with incurable, degenerative illnesses,” Ms Wenig said.

“I want to die at home. I want to die in our bed, in our bedroom with my partner, Anne with me,” Edie Mayhew, diagnosed at age 59 in October 2010, said.

“I also want a quick and painless death. I support assisted death for terminally ill people who have expressed that wish at an earlier point in their illness when they were able to do so.

“I don't want to creep endlessly into the night over weeks or months or even years,” Ms Mayhew said.

Dementia, including the most common form, Alzheimer's disease, is a terminal, progressive brain disease that affects every person differently, at different ages and progresses over different and unpredictable time frames.

“For example, a person could be diagnosed with dementia and with good support, live well for a number of years, be involved in the day to day life of their family, engaged and contributing in the community and be making important decisions about their finances, health and lifestyle.

“As survival prognosis is difficult we encourage all our clients to plan early and discuss their Advance Care Plans with their families and doctors,” Ms Wenig said.

In a submission to the Parliamentary Committee developing the discussion paper on Voluntary Assisted Dying, Victorian consumers, meaning people living with dementia, their families and carers, expressed the view that people with degenerative disorders should have the right to make an enduring request for voluntary assisted dying in an Advance Care Plan.

“Consumers believe that family members should be included in the assisted dying decision-making with the person’s consent and with proper protections for the person with a diagnosis of dementia.

“It should not be assumed that all people with a diagnosis of dementia are unable to make important decisions about their life.

“Our organisation is neither for nor against assisted dying. We do advocate, however, that all individuals should have a choice.

“With appropriately trained medical practitioners a person with dementia’s rights in relation to the proposed Voluntary Assisted Dying legislation can and should be upheld,” Ms Wenig said.

Alzheimer’s Australia Vic submitted A good death is my right, the views of Victorian consumers to the Parliamentary Committee preparing the Voluntary Assisted Dying discussion paper, on 10 April 2017.

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In Victoria 104,000 people are living with dementia.

Alzheimer’s Australia Vic is the peak body and charity representing people of all ages with all forms of dementia in Victoria. As the peak body, we provide specialised dementia information, education and support services.

Call our National Dementia Helpline on 1800 100 500 or visit www.fightdementia.org.au/vic

Notes to media

When writing or talking about dementia, please include our free National Dementia Helpline 1800 100 500 - a telephone information and support service available across Australia.

The words used to talk about dementia can have a significant impact on how people with dementia are viewed and treated in our community. Please read our Dementia Language Guidelines that have been developed by people living with dementia and carers.

Media contact: Christine Bolt 0400 004 553 / christine.bolt@dementia.org.au, Phillip Money 0427 757 434 / phillip.money@dementia.org.au