Phyllis Woodger remembers the taxi pulling up outside her Frankston home.
It was 2005 and her husband of more than four decades, Ken Woodger, was being taken to the hospital where at 65 years old he would chose to end his own life.
Ken – an adored husband and father of two who had built a career as a widely respected civil engineer – had been diagnosed with motor neuron disease shortly after retirement. After losing his ability to speak, eat or move, he had decided to end his life, legally in the care of doctors, by ceasing all food and fluids through his feeding tube.
Phyllis, who met Ken at an Anglican Youth Club when they were just 16 years old, remembers Ken's final request as the taxi pulled up outside their house.
“He wanted us to wheel him around the veranda, so he could take a last look at the garden we had planted together - so he could say goodbye to his home,” she says.
As his wife and then carer, Phyllis says it was devastating to watch as the disease took over his body, leaving behind a perfect but imprisoned mind.
“He had no speech, he had no ability to eat, no movement of his arms or legs, hands or feet but his brain was perfect,” she says. “It worried me that the mental anguish he was living with was just as bad as the physical limitations.”
When his condition worsened, Ken used a communication device to ask his daughter Annie about his end of life options.
When he found out that he could end his life without breaking the law, he gathered his family together and told them that this was his wish. Ken painstakingly explained on his device, his life was “cruel”.
“We felt that it was his choice, and he had so few choices left, so you couldn't stop him,” Phyllis says.
Despite being able to honour Ken's wishes, what followed were some of the worst days of Phyllis and Annie's life as they watched their beloved husband and father endure a lengthy, uncomfortable and drawn out death.
“The last month was dreadful,” Phyllis says. The decision made, Ken waited for a bed to become available in the palliative care hospital. “We didn’t know what death this way would entail. I feared he would be in pain.”
Once in palliative care, Ken no longer consumed food or fluids via his tube. His body began to dehydrate, and Phyllis and Annie had to swab his mouth to keep it moist and tried to remove obstructions that adhered to the back of his throat making him gag.
“That was the beginning of the next 12 days, where we had to watch him die,” Annie recalls.
“In the end they had to sedate him, because the cramps were so agonising. I'm hoping he was comfortable once they sedated him.”
Phyllis says the death her husband went through, despite being his choice, was long and distressing for him.
“It's a terrible thing. You don't know if you have the right to let people suffer like he did. I would feel as though we should not be allowed to let this sort of suffering happen” she says.
She wants people with terminal illnesses to be allowed to end their suffering in comfort and at a time of their choosing.
“I often thought to myself after watching my grandma die, I don't want to die like she did. But Ken’s death was so much worse than even that. To be left like that with no movement whatsoever other than his eyes, no way to talk to your family. To be sitting there day in day out, being toileted and fed by a tube, waiting to die, essentially. People have no idea what that's like – especially when it goes on year after year. He was the most brave and stoic of people.”
Ken's philosophy in life has been summarised by a poem he quoted to his colleagues on his retirement: I too shall work to make the world a better place for those who follow,
Indeed, Ken's whole life was about contributing to the quality of the lives around him, whether it was fixing a street light or chairing kindergarten, school and sporting committees.
His family now feels the same obligation – to seek out a better world for others by ensuring no one suffers unnecessary cruelty in death.
“It's our responsibility as caring humans to give people choice,” Annie says. “It's just that we're all too afraid to take that responsibility.”
The poem Ken quoted on his retirement reads:
"Today I was warmed by fires I did not build
I drank from a well I did not dig
I sat in the shade of a tree I did not plant
Let me pause to give thanks for the efforts of those
Who came before me and vow that I too shall work to make
the world a better place for those who follow"
Phyllis & Annie Woodger, August 2017