Andrew Carnegie and his mother Sue De Ravin, who has been unresponsive for the past 10 years after suffering a stroke.

Andrew Carnegie and his mother Sue De Ravin, who has been unresponsive for the past 10 years after suffering a stroke. Photo: Wayne Taylor

If it were not for some occasional snores, Sue De Ravin could be dead. The thin woman is lying motionless in a chair with her arms crossed over her chest. Her mouth is resting wide open. Inside, all but a couple of teeth are missing.

I know she never wanted to be here and that if she had any control at all she would stop eating. 

For more than four years, Mrs De Ravin has been lying like this in a nursing home bed totally incontinent and with her knees bent rigidly together. During that time, the former nurse has barely opened her blue eyes and has not responded to people’s voices or requests to squeeze their hands.

Sue De Ravin in the 1960s while working in the Myer advertising department.

Sue De Ravin in the 1960s while working in the Myer advertising department.

Like thousands of other Australians living through the final stage of dementia, there is no way out.  Every day, the 78-year-old is sedated with anti-psychotic medication for up to 20 hours before being roused by carers so they can lift her with a mechanical hoist from her bed into a chair to eat. She cannot ask for food, but opens her mouth like a baby bird if it is presented to her lips.

Her son, Andrew Carnegie, says the only other signs of life in his mother are reflex movements and moans in response to pain and the occasional raised eyebrow when her favourite French perfume is sprayed on her. While it is impossible to know how aware she is of her situation, he doubts her level of consciousness.

"I know she never wanted to be here and that if she had any control at all she would stop eating. So by deduction, I know she is no longer with us," he says.

"But she breathes, her hair is trimmed, she is washed and she eats on demand, and another day, another month and another year passes."

Mr Carnegie is telling his mother’s story because he is frustrated she had no option to peacefully end her life in circumstances she had previously deemed intolerable.

Despite writing a "living will" that would prevent her from being resuscitated in the event of a cardiac arrest or being given antibiotics to treat an infection, Victorian law does not allow Mrs De Ravin or her power of medical attorney to order anything that would hasten or cause her death in her current state.

With about 280,000 Australians suffering from dementia, her story raises the question of whether people should be able to write a specific directive about how they should be treated if they find themselves in a similar position, including whether they should be spoon fed.

At the moment, about 7 per cent of Australians are believed to have an advance directive but in Victoria any refusal of treatment can apply only to a current illness, not a possible future illness, limiting their scope and utility.

It is also unclear if they apply to issues such as feeding, which may be seen as a non-medical human right if a person is still able to swallow.

In February 2012, the Victorian Law Reform Commission recommended the state government change its laws to allow people to refuse treatment for possible future illnesses to bring Victoria into line with five other jurisdictions that have such legislation. The Napthine government has not responded to the commission's report, but a spokesman said on Wednesday that it planned to release a new advance-care planning strategy.

Mr Carnegie, a lawyer, says that after his mother was diagnosed with visual dementia following a series of mini-strokes in her mid-60s, she made it very clear that she did not want to live with the disease.

In her more lucid moments, he says, the member of pro-euthanasia group Dying with Dignity talked with her family about travelling to Switzerland's Dignitas clinic to die, but her window to meet the criteria had closed. She also contemplated suicide but decided the stigma was too great for her family to bear.

Her husband, John De Ravin, says: ''Sue always said that if she ended up in a nursing home, she would knock herself off.

''I never quite understood that, but having seen what she has been through for the last eight years, I can understand why now.

''I wouldn't want her to die if there was any life in her, but there's not.''

In a personal appeal to Dr Napthine, a veterinarian, Mr Carnegie said it made him angry to hear people talking about animal rights when people could not choose a peaceful, dignified death when they were terminally ill or had no quality of life. ''Premier, I sincerely hope that you can make a difference, and become a leader on this issue. It is never going to be a national issue and we need a leader to take it on. Because as far as I can see it, our laws leave your constituents but one blunt and very real choice, which will always be ill-timed - that is a very undignified suicide in a hotel room or garden shed,'' Mr Carnegie said.

Mr Carnegie said he had found his mother's condition so distressing at times that he had even contemplated ending her life for her.

''I have thought about a mercy-style killing, but I just couldn't go through with it. But I'm sure it must have happened. That is a very dark place for people to go and by not giving people a legal framework, we're pushing people into these places. It's not right,'' he said.

Dr Rodney Syme, the former president of Dying with Dignity Victoria, urged the government to consider new laws for advance directives, saying the lack of clarity around their practical effect was a major defect. He also called for a debate about whether people should be able to refuse spoon feeding before finding themselves in the final stage of dementia.

''People with terminal dementia end their lives in a protracted sub-infantile state, unable to communicate, incontinent, immobile and unable to feed themselves. Even a very small infant shows interaction with their environment and you can see them smile, so it's even worse than being an infant.

''I find it hard to believe that anyone could see Susan De Ravin and say, 'That's fine, I'd like my life to end like that', and yet that's what our society both accepts and ignores. This is what we are tolerating and co-operating with.''

 

For help or information visit beyondblue.org.au, call Suicide Helpline Victoria on 1300 651 251, or Lifeline on 131 114.