Should dementia patients be able to choose to die?

Rod Keys in care, with his son holding his father's hand "like a little boy". (Supplied: Jenny Keys) Link copiedShareShare articleThe final days of 77-year-old Rod Keys's life were not what he or his family wanted. Battling with advanced dementia, unable to move or talk, Rod's four adult children found it emotionally gruelling watching him fade away in residential care in Maleny. It was a far cry from the "big, strong" farmer, whose interest in the military led him to repair tanks bought by collectors in the UK and America. If they could spare another family from the heartache of watching a loved one die a long, painful death, they would. This is why they are calling for reforms to assisted dying for families affected by dementia. Rod's wife, Jenny, remembers her husband as a generous man, always volunteering for the community. She met him in Sydney in the 70s when she was a singer on Barry Crocker's TV show The Sound of Music. She said he was a "good-looking army man", working as a lieutenant in Signals. Jenny Keys with a newspaper image of Rod Keys sitting atop a military tank he had refurbished. (ABC Sunshine Coast: Kaitlyn Sawrey) After he was diagnosed with dementia in 2017, Jenny and Rod completed a Start2Talk form in 2022 to outline Rod's wish to terminate his life when he could no longer feed himself, recognise people or get around. This form was also signed by his doctor to confirm he had the capability. Like most of the 400,000 people living with dementia in Australia, Rod didn't meet the criteria for assisted dying. To qualify in Queensland, he needed to be competent to confirm his decision, and he needed to be within 12 months of imminent death. University of Southern Queensland law professor Kerstin Braun said these requirements made it "almost impossible" for people with dementia to access voluntary assisted dying. Jenny and Rod Keys in happier times, before Rod's dementia diagnosis. (Supplied: Jenny Keys) Dementia unfolds in three stages, with each stage potentially lasting years. By the time Rod would have been facing the final stage — advanced dementia — he would no longer be able to give verbal approval. It's a system his brother Murray says isn't good enough and doesn't honour his brother's wishes. Murray has gathered almost 5,000 signatures to petition the Queensland government to amend the Voluntary Assisted Dying act to include dementia. "I have not struck a person who has said this is not a good idea. And I have struck people who've got even more horrendous tales to tell than my brother's," he said. Murray Keys is petitioning the Queensland parliament to amend the Voluntary Assisted Dying legislation to include dementia patients. (ABC Sunshine Coast: Kaitlyn Sawrey) Whether dementia should be included in VAD laws has legal scholars debating the ethical and legal hurdles, and there are just two jurisdictions in the world that allow people with dementia to choose to die. The Netherlands has been allowing euthanasia for people with dementia since 2002. To access voluntary assisted death, you do not need to be facing death in a certain time, but your disease must be deemed to cause suffering that is lasting and unbearable. Your wishes can be communicated through an advanced care directive when you are no longer verbal. While the Netherlands allows dementia to be included in its voluntary assisted dying laws, the reality is, doctors don't often perform these procedures. Only 3 per cent of people who access euthanasia in the Netherlands have dementia. The Keys family take a bushwalking trip to Carnarvon National Park. Rod had been there on an archaeological dig as a teenager. (Supplied: Jenny Keys) Canada does not have an advanced directive system at the federal level. You have to go through the assessment application for voluntary assisted dying, and then you waive the final consent document. However, if someone is resisting on the day, doctors can't go through with the process. Again, the number of dementia patients accessing this system in Canada is small. Each state in Australia has its own system, but, broadly, the laws would need to be fundamentally rewritten to allow dementia access. Professor Braun said the time-frame-until-death requirement would have to be removed to allow access in the early stages. "Perhaps legislation should include that fear of future suffering can be considered current suffering," she said. "And of course, the decision-making-capacity requirement that it must be there at all stages of the process would have to be reviewed." Queensland is due to review the VAD laws this year. Murray Keys is hopeful his petition will continue to gain traction. Rod Keys being fed in care (Supplied: Jenny Keys) Jenny remembers the pain of having to put her husband into care when she could no longer keep him safe. "It was quite tragic. I used to go away crying all the time because I'd turn around and see him standing at the door, begging to come out,

Should dementia patients be able to choose to die?

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