Update July 12, 2019: After this story was broadcast in 2018, Ron Posno received more than 3,000 letters and emails of support from listeners across the country. He continues to volunteer on behalf of Dying with Dignity Canada and to speak publicly about living with dementia. On June 8, 2019, Ron addressed the board of the Alzheimer Society of Canada. He is still fighting for advanced directives for medical assistance in dying to be recognized.

Original story published on Sept. 30, 2018 runs below.

A London, Ont., man in the early stages of dementia wants the right to end his life with medical assistance when his condition gets worse.

"I want my death to occur at the beginning of the severe stage of Alzheimer's, and not the end," Ron Posno, 79, told The Sunday Edition's Alisa Siegel.

But unless the law changes, he will not be eligible for an assisted death.

In 2016, changes to the Criminal Code made medical assistance in dying available to competent adults with a serious and incurable illness or disability, in an advanced state of irreversible decline, with a reasonably foreseeable death.

I have dementia. I'm still a Canadian citizen. I have full rights. I want those rights. - Ron Posno

Assisted death is not available to children or people with mental illnesses. Most importantly to Posno, the law makes no provision for advance requests — effectively excluding people with Alzheimer's and dementia.

The individual must confirm their wish to proceed at the time of the assisted death.

"Just before they administer the drugs … the doctor has to ask you at the last possible minute, 'Do you still want assisted death?'" said Posno. "When he asks that question, I have to be mentally competent enough to be able to answer it. Dementia people can't do it at the last minute."

Posno is willing to do whatever it takes to end his life on his own terms, including challenging the law.

"The Supreme Court said that it's a charter right. People should not have to live in periods of extreme pain and agony," he said.

"I have dementia. I'm still a Canadian citizen. I have full rights. I want those rights."

Debate over advanced directives

Defenders of the current law say the restrictions are there to protect the vulnerable — especially those who lack the capacity to voice second thoughts.

They argue someone could be transformed by dementia and become someone new — with a greater tolerance for incapacity and a different definition of a meaningful life.

Many of these concerns were raised by people working in dementia and senior care advocacy groups.

Officially, the Alzheimer Society of Canada opposes the use of advanced directives for medical assistance in dying. CEO Pauline Tardif said many of the people her organization serves have very different concerns than Posno.

People with dementia 'are more susceptible to risky decisions by caregivers,' said Pauline Tardif, CEO of the Alzheimer Society of Canada. (Submitted by the Alzheimer Society of Canada)

"[They ask]: How will you protect us? How will you defend our interests to make sure that we're not vulnerable to decision-makers?" she explained.

Tardif said it's challenging to decide when someone who requests an assisted death in advance should receive it.

"Is it the first time they forget their loved one's name? Or is it when they no longer recognize everybody?"

Lifelong planner

Sandy Posno has known her husband was a meticulous planner since their first date.

"Ron began to tell me all of his plans for, it seemed like, the rest of his life. He was planning on going to university and joining the air force, traveling all around the world," she said.

Sandy and Ron Posno met in high school and have been married for 57 years. (Alisa Siegel/CBC)

The couple married when they were 21. He became a special education teacher and an avid recreational pilot.

Three years ago, he began to notice his short-term memory was slipping. He was diagnosed with mild cognitive impairment (MCI), which is often a precursor to Alzheimer's and dementia.

The planner sprang into action. He laid out the specific conditions under which he would want medical assistance in dying.

Ron has said a number of times, 'I don't want to be a vegetable.' - Sandy Posno

He wants to die "when I am unable to recognize, and/or cognitively and/or adequately respond with appropriate emotion and thought to family members, care providers or friends — or when I am unable to eat, clean or dress myself without assistance."

Sandy wasn't surprised by his decision.

"Ron has said a number of times, 'I don't want to be a vegetable that has to be bathed and fed … I would hate for you to have to come and say hello to me and I wouldn't even know who you were,'" she said.

Posno filled out an application for an assisted death. He rewrote his will, re-confirmed his Do Not Resuscitate form and fine-tuned his advance directive.

He spoke to his lawyer, his substitute decision-makers, his family doctor and to a doctor who provides medical assistance in dying. They all told him those documents wouldn't be enough, unless the law is changed.

John Getliff, a retired judge and criminal defence lawyer, has been friends with Posno for many years, and served as one of the witnesses on his application for medical assistance in dying. (Alisa Siegel/CBC)

"It should be a slam dunk to give people the right to make this choice when they're mentally capable … in the face of a diagnosis that is not going to get better," said John Getliff, a former judge on the Ontario court of justice who was one of the witnesses on Posno's application.

"If they become somebody else down the road, this still applies, sort of the same way that a living will does, or a power of attorney that survives death. So I just can't understand why it would be so hard for people to make the right call."

Growing consensus

Gary Rodin, a psychiatrist at Toronto's University Health Network who specializes in end-of-life care, is cautiously in favour of extending the legislation around advance requests.

"I think we should be able to legalize substitute decision-making," he said.

Rodin serves as an assessor who decides whether requests for assisted dying should be granted. He says there is a growing consensus in the medical community that the law should be amended.

If I can't get assisted death legally ... I will do it my own way. - Ron Posno

"As we've developed frameworks which have a lot of safeguards in them, I think we've seen that this protective clause … has had an unintended effect of depriving some people of their rights."

Shortly after legalization, the federal government appointed a panel of experts to review the exclusions under the law, including the prohibition on advance directives. Its findings will be released to the public in December, but the panel does not have the power to make formal recommendations to the government.

Posno says he is prepared to challenge the law in court if he can gather the resources. Regardless of what happens, he is determined to die on his own terms.

"If I can't get assisted death legally … I will do it my own way," he said.

For now, he is focused on enjoying the time he has left.

"I got a lot of things I want to do yet, and I'm going to do them as best I can," he said.

Click 'listen' near the top of this page to hear Alisa Siegel's documentary Eight Conditions.