The Voluntary Assisted Dying Act comes into effect on 28 November. Peninsula Living Pittwater explores changing attitudes to death.
When Olivia Penton’s nan, Avalon’s Mavis Hiller, was diagnosed with dementia in 2016, her world fell apart.
Mavis had raised Olivia, 37, and twin sister, Mel, since the age of 2, and they migrated to Australia 25 years ago, settling on the Northern Beaches. Over the last 15 years, Mavis battled breast cancer and bowel cancer before being diagnosed with dementia.
The disease was brutal, and Mavis begged doctors to help end her life before it got to the final stages. She passed away earlier this year, aged 93.
“By the end, she could barely breathe, speak, eat, walk or talk. She just wanted to pass away peacefully with her family and friends around her,” says Olivia, who lives in Dee Why.
“She looked into going to Europe, where voluntary assisted dying in dementia cases is accessible. You wouldn’t let an animal suffer the way she did in those last stages.
Forrestville’s Olivia Penton says voluntary assisted dying should be available for people like Avalon’s Mavis Hillier, who suffered dementia.
“How we wish she could have been granted that one last wish.”
The Voluntary Assisted Dying (VAD) Act 2022 will come into effect on 28 November as an available option for eligible NSW residents after an 18-month implementation period.
Eligible people are those who have been diagnosed with a terminal illness and have life expectancy of less than six months and/or less than 12 months who are living with a terminal disease, illness or medical condition –such as a neurodegenerative condition –and experiencing unbearable suffering.
Currently, VAD laws do not extend to Alzheimer’s/dementia, as eligibility requires the person to have decision-making capacity at all stages of the process.
NSW is the sixth and last state to legalise VAD and will be led by Northern Sydney Local Health District (LHD). It is carried out by self-administration, where the person takes the VAD medication themselves, or practitioner administration, where the person is given the medication by a qualified health professional.
While supporters are lobbying for changes in the legislation to stretch to Alzheimer’s and dementia sufferers, President of Dying with Dignity NSW, Penny Hackett, says it’s a long way off.
She tells Peninsula Living Pittwater, “We are well aware that this limitation has disappointed many people, but it would be very challenging to create laws with sufficient safeguards and we can’t see any prospect of an Australian Parliament being prepared to tackle the issue in the foreseeable future.
“In the meantime, we are focusing on ways in which people with dementia in Australia can prepare for their end of life and put plans in place to make sure their wishes are respected through advance care planning and appointing enduring guardians.
“These measures could ensure that they are not given futile treatments or kept alive against their wishes once they lose capacity.”
When VAD was introduced, a Dying with Dignity survey showed 82 per cent of Pittwater residents supported it, Including Manly MP James Griffin, and then Pittwater MP Rob Stokes.
Advocates insist it provides a compassionate option for individuals suffering from intolerable pain and a diminished quality of life to have control over their own death. They say it can also alleviate the financial burden of prolonged medical care.
Mr Griffin says: ”This legislation seeks to do one thing and one thing only, and that is provide dignity and relief of insufferable pain for someone who has determined that in the knowledge their end is inescapable, and does not wish to be in insufferable pain any longer; not someone who has a fleeting feeling of despair.”
However, opponents claim VAD raises concerns about the potential for abuse, the devaluation of human life and the ethical implications of intentionally ending a person’s life, even in the context of terminal illness.
One doctor, who asked not to be named, told Peninsula Living Pittwater: “It goes against our grain to do this because we are trained to heal. To now be in a position where you can be paid to assist the dying process, even though you know they’re suffering, still goes against the grain and could be wide open to exploitation.”
Registered nurse Cate Brockbank supports families across the Northern Beaches from birth to end-of-life care. She is also a celebrant and ‘death doula,’ providing the dying and their families with support and guidance, including sitting with patients during their last stages.
Cate, who owns Freshwater Funerals, tells Peninsula Living Pittwater: “Families need support more than ever in understanding the complexities and the vast options they now have in farewelling a loved one.
“Having conversations about death and dying helps to normalise, helps with the grieving processes and in doing so helps us to cherish the time we have left.
“Now, with the Voluntary Assisted Dying Act, people can have a choice about what their end of life can look like.”