Grieving husband Roy Harvey pitches end-of-life directives to ACT Assembly as it considers voluntary assisted dying

"Once she'd made up her mind, you didn't spend a lot of time arguing with her," he laughed.

That is why when Anne noticed a lump in her breast in 2015, and decided not to see a doctor, there wasn't much anyone could do.

Anne's cancer worsened in 2020, so she spent eight months travelling the world with her husband.

It seems like a surprising decision for someone as well educated as Anne.

READ MORE: After watching my loved ones die, ACT needs to get voluntary assisted dying right

She had a PhD in pharmaceutical research, was on an advisory board for the Pharmaceutical Benefits Scheme and worked as a senior health adviser.

But Anne had "quite an aversion to medical treatments", for both personal and philosophical reasons, Roy said.

She lived life on her own terms. And she wanted to die the same way.

"There were three things that we both agreed we didn't want. If we couldn't wipe our own bum, if we couldn't feed ourselves and if our mental faculties were [shot]," he said.

"She experienced all of those three things in the last three days, largely drug induced.

"Three or four days of absolute horror."

The ACT government is accepting submissions on voluntary assisted dying legislation.

Roy is advocating for the establishment of end-of-life directives, which would allow people to outline their preferences for death.

Two weeks before she died, Anne went to hospital to drain fluid from her lungs.

As her health deteriorated, she accepted more treatments.

"She never wanted to become a disease on legs," Roy said.

"When she was in the hospital with two tubes out her back, cannula in each arm, being assisted to go to the toilet, I just thought, this is not where you wanted to be."

She went home briefly, before being taken to Clare Holland House, a hospice attached to Calvary Public.

Roy said while there, Anne became lucid and indicated her desire to leave and die at home.

"She said, 'What am I doing here? I'm appalled.' She said that to me. And she said to her sister, 'Get me out of here. I don't want to come back.'"

Anne died on May 17 in hospice, five months before her 40^th wedding anniversary.

Roy wishes many things were different, from the very start to the end of the process. He has been speaking to healthcare providers about these to create change.

But mostly, he wishes he'd started a conversation with Anne - one they'd had so many times before - when it mattered the most.

"The first decision is easy, but you need to talk about it through the course of the progression of the illness and have some agreement: who initiates a discussion, and at what time," he said.

"I wish I would have had the courage to say to her, 'Look, we've talked about how you want to go, you're getting very close to the things that you do not want to happen, so what do you want to do?' But I just didn't."

Roy wants end-of-life directives included in ACT advance care plans.

This is a formal document outlining someone's preferences regarding medical treatment if they become incapacitated.

Euthanasia opponents have said legalising assisted dying would put vulnerable people at risk of being coerced into taking their own lives.

Roy said Anne was still cogent and assertive in her last two weeks.

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But he still believes a directive would have allowed Anne, who spent years refusing treatment just to undergo an immense amount in her last month, to control her last days.

At the very least, it could have allowed him to ask his wife the hardest possible question.

Is it time to die?

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