Front Burner - One man’s fight for his right to die

Episode Date: January 16, 2020

Ron Posno knows how he wants to die: on his own terms and with help from a healthcare professional. He’s an advocate for people with dementia and a volunteer with Dying with Dignity Canada from London, Ontario. But he doesn’t qualify for a medically-assisted death right now. That could change. Starting this week, the federal government has launched two weeks of public consultations asking Canadians how they would like to amend the existing medically-assisted dying laws. This follows a Quebec ruling last September that found people should be able to access assisted dying even if death is not imminent. Today on Front Burner, we ask if dementia patients should be able to consent to an assisted death in advance.

This is a CBC Podcast. Hello, I'm Jamie Poisson. Ron Posno knows that he wants to die, on his own terms and with the help from a healthcare professional. own terms and with the help from a health care professional. Ron has dementia and he wants to die after he loses his cognitive abilities. I want my death to occur at the beginning of the severe stage of Alzheimer's and not the end. I don't want to live that way. And while he doesn't qualify for a medically assisted death or MAID right now, this could change. Starting this week, the federal government has launched two weeks of public consultations. They're asking Canadians how they would like to amend the existing laws,

particularly in the context of a Quebec ruling last September that found people should be able to access an assisted death even if that death is not imminent, if they're just living in pain. Other really fraught issues being considered include whether to allow mature minors to make this choice or people with mental illnesses and also people like Ron, people who want to give something called advanced consent before their symptoms take over. That's what we're talking about today, advanced consent. Ron Posno is an advocate for people with dementia.

He volunteers with Dying With Dignity. He joins me today from London, Ontario. This is Frontburner. Hi, Ron. Thank you so much for being here today. Jamie, thank you for inviting me. So I want to start today with your diagnosis. When were you first diagnosed with dementia? I was diagnosed in August 2016. Minor cognitive impairments. Now that's a very early stage of dementia. This can move, because once you've got dementia, it's a downward progression. But so this will move into one of maybe 13 different types, likely Alzheimer's.

Okay. And what did you do after you found out? Consistent with my life, I've always planned things, anticipated things. I sat down to find out as much as I could about dementia and then set out a life plan. Now, at that time I was 76. I'm 80 now. So my life plan is not that long, maybe 10 to 15 years. And did you know right away that you were interested in an assisted death? Yes, I was. I was certainly much taken with the Latimer case. He's accused of

killing his 12-year-old daughter Tracy, who suffered from a severe form of cerebral palsy. Robert Latimer admitted to police that he put Tracy in his pickup truck and ran a hose from the exhaust pipe to the cab. Jurors found Latimer guilty of second-degree murder. But Latimer's distraught wife said her husband had done what was best for their daughter. Whatever hell they put him through will not begin to match the hell that our little girl went through.

When the assisted death was not available, and then, of course, Sue Rodriguez, who really brought it to fore there in the mid-'90s. Rodriguez is slowly dying of ALS, or Lou Gehrig's disease. Five of the nine justices ruled that an individual's right to a dignified death is not more important than the state's interest in protecting the weak and the vulnerable, people who might be persuaded or pressured to commit suicide. She expressed her disappointment and urged Parliament to act.

I hope that Parliament will act. And then the Carter case, which decided it in 2015. Endure or take their own life. This country's top court called that choice cruel. A personal triumph for the family of Kay Carter. She helped start this court challenge when she fought to have a doctor help her die in BC. A huge victory for Canadians and a legacy for Kay. This applies to people with a medical condition who are suffering without

chance of remedy but not just the terminally ill. And from a general basis, I celebrated it because it's the kind of thing that people need to be able to do. Ron, you mentioned that you're a planner. You're a planner in your life. Can you tell me a little bit about your life? What did you do as a career? Oh, I wanted to be a military officer, Air Force officer. So I went to military college, Quebec College, Minutier Royale, Dessin-Jean, Quebec. And from there, I came out and I wanted to go into teaching. So I started in public education. And shortly after a couple of years,

I was invited to get involved with special education. And that was the turnaround in my life, really. Because I couldn't possibly teach today where you have to be on page 72 on October 16 or you're in trouble. I had to take a look at a child, a person as they were at the time, and work out a plan for that person

as to be able to make him have the best time learning he possibly can. Okay. And that became a philosophy. It's ironic. Here I am at this age. I've turned it around, and that's the basis of my life and what I try to do when I'm talking to other people.

Ron, can I ask you, what does a good death look like to you? I think the primary word to describe it would be some dignity. We're all going to die. We all know that. At least most of us have accepted that. But it's amazing to me that people that just don't even think about it. To me, a death is where somebody can die in accordance with their wishes. It can be a natural death. That's perfectly all right. I'm not opposed to how it goes, but I want people to be able to choose to die with some dignity, according to their plan.

I see some marvelous plans worked out by people in terms of what they're doing. A close friend of mine this morning, I read his obit. Huh. He was a doctor, too. And he died easily in the company of his family in his home on Sunday morning. Let's talk about your plan. You know, I understand you have eight conditions for signaling, essentially, when you want to die.

What are they? Oh, I didn't bring all my eight, but I'll when you want to die, and what are they? Oh, I didn't bring all my eight, but I'll give you an idea. This looks at, really, I became very much aware of one of the failures, major failures, of the MAID legislation was the idea that I cannot, me with dementia, I cannot access MAID because they have two primary limiting conditions. One, death has to be in the foreseeable future. Well, what's that? Foreseeable future, and people don't know.

When this legislation came out, was it two weeks? Was it two months? Was it two years? Right. We didn't know that. was it two years right we didn't know that and then the other thing is that somebody put this in to supposedly to protect the vulnerable is the expression that they used uh it's generally called the late stage protection so a person is consented asked for assistance in dying and then when the moment comes when the doctor is there to literally insert the needle,

might allow you to die easily, they, by law, have to ask you, do you still want assistance to die? Right, and you have to have the mental capacity to do that. And if you can't answer them firmly and with some degree of some rationality, then they can't do it. So in my case, I have dementia. I'm on a downward slide. It's going to take, to the end, it'll take somewhere like 10 to 15 years for that to

happen. But you've got to deal with the fact that every day you live, every week you live, you're less the person that you were before. And you get to the point where I become, at age 80 plus, reduced, just naturally, that's the way the dementia works, I'll be reduced to the functioning capability of an infant. Now, I don't want to live in a state where I can't recognize my wife, when I don't know who's in the room, when I can't communicate with people. That's one of my conditions. Okay.

Another condition that I have is I don't want to be incontinent. And that's what happens. And the way it works today, if you're in a care facility, you'll get a promise. Maybe you'll get your diaper changed twice a day. Well, I am 80 years old. I don't want somebody to have to change my diaper twice a day for the rest of my life. I'm sorry, I don't want that. That's very undignified for me.

Another instance is I can't feed myself. I can no longer put food in my mouth. I can't find my mouth. Do you remember how it is with a child when you watch a child grow and learn? And they have to learn all these things. Well, you see, I'm doing it in reverse. So I can't put the food in my mouth. And then when I do get in my mouth, I don't know how to chew it or swallow it. Right. So when these things start happening. So these kind of conditions. Yeah.

When they start happening, they're what I refer to as signposts on the road to my decline. This is when you would like a medically assisted death. That's it. Exactly. But like you mentioned, you can't get that right now because under federal law, an assisted death is only available to adults with grievous and irremediable medical conditions whose natural death is reasonably foreseeable. consent right before any life-ending medications are given. And, you know, at the point that you would like to die, you won't be able to do that or you don't believe you'll be able to do that. Not likely. I won't be functional. I can't comprehend where I'm at, what's going on in my world. There is an update here that the Trudeau government is not appealing a Quebec Superior Court ruling that found that it's unconstitutional for you to have to be dying in the foreseeable future.

The judge found that two Quebecers with illnesses should not have to live in pain, even though they weren't dying imminently. It was one of the plaintiffs, Nicole Gladue. She has post-polio syndrome and scoliosis. NICOLE GLADUE, I'm trying to live without hope. SARAH VARNEY, The judge suspended her ruling for six months to give the government's time to change their laws. How does this ruling affect you?

NICOLE GLADUE, Oh, absolutely. Yeah. ruling for six months to give the government's time to change their laws. How does this ruling affect you? Oh, absolutely. Yeah, that Quebec ruling was a door opener. I started constructing my plan and rewriting my power of attorney for health, particularly. I was sharing it with my niece, who's my executor. My wife and I don't have children, so we asked my niece and nephew to do that function for us. My niece is a trained lawyer. She works out of Toronto. She's very successful, very good at her job, and I have a tremendous amount of respect for her. One of her major clients is the Canadian Association of Physicians. So she spent a large part of her career defending physicians

who are being sued for one reason or another. So she's very familiar with the laws as they relate to medical practice. So when I was sharing with her what I wanted with respect to MAID and so on, she listened to it, and she was encouraging and supportive. But we got to the end of the discussion, and she says to me, Uncle Ron, I agree with everything you say. You're absolutely right.

But you can't ask me to break the law. So that put me back, and I did a, one of the first things I did on the constructive thing is I wrote a paper, a discussion paper for use with people. And I referenced made.

And I described it as a design failure. And this business of foreseeable future is one of the design failures. And one of the other aspects was this business of what I refer to as late-stage protection, which I've talked about. Yep. So this was very clear to me, and it has been for the past four years. Right. That made, as it is right now, is a design failure. back is demonstrate. And I'm so pleased that the Minister of Justice and the Prime Minister agreed that it's time to reopen the book on May. Let's fix it before we go any further.

Right. Because this ruling, it still doesn't deal with late stage consent, which is something that the government is consulting with the public on right now as well, right? That's right. Okay. You mentioned your wife. How does your wife feel about your wishes? My wife and I are very close. We met in high school doing a school show, and she's the large basis of everything I've done in my life, and vice versa.

We support one another completely. And so we've talked about it. Yes, she supports me. Does she want me to die? No. No. Who wants their partner to die? At least not normal, healthy relationships. But it's going to happen. So she supports me in this plan that I have to be able to have an assisted death. Okay. can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections.

These failures that you pointed out four years ago, this was around the same time that assisted dying became legal in Canada. And do you think that since then, people have different ideas now about assisted death? Oh, absolutely. There are people who are absolutely opposed to any idea, any concept of assisted death.

These are what I'll put in the rubric of conscientious objectors. Opponents like Dr. Will Johnston hope pain management, palliative care will be sufficient for most patients and doctors. We can do that without turning our 2,400 years of medical ethical history on its head, without crossing that bright line between attempting to treat the symptoms of the patient

and intending to kill the patient. And they're entitled to their point of view. In Canada, you're entitled to have a difference in point of view. And so I don't worry about those. That's their business. They can choose what they do, but they have no right to limit my choices or anybody else's choices. And that's what the Supreme Court ruling said in February 2015. The court said the current law infringes on the guarantee of life, liberty, and security of the person, creating a duty to live rather than a right to life. But how have people changed? Well, quite literally, you can take a look at the number of people who are accessing MAID over the years.

And Ron, just to be clear, you know, this law that's been struck down, this deals with you having to die imminently in the foreseeable future. You know, you want to make an advance request because you don't want to have to die before you're ready. That's right. Is that fair? Absolutely. And we saw this in another case, the case of Audrey Parker, right? Exactly. That's right. Is that fair? Absolutely. And we saw this in another case, the case of Audrey Parker, right? Exactly. That's what I was going to refer to. I am pleased

to say that accepting my death really allowed me to live my life on my own terms. And Audrey Parker, she didn't have dementia, but she had cancer, breast cancer originally, and it metastasized to her brain. And she had made, already set aside, ready for the goal with the parts of breast cancer was concerned, but she was concerned that with it moving to her brain, her mental functioning, her ability to think would rapidly diminish. I knew when I got that awful news, I had to make a really big decision. Would I live my life in fear, or would I try to make every day of the rest of my life the best it could possibly be? And that is exactly what I did. So she had hoped to be able to have Christmas that year with her family, go past the new year, and then take her medical assistance dying sometime in january or february

but with this shift to brain she said i can't risk it because she might not be able to consent at that point if i become incompetent along the way i will lose out on my choice of a beautiful peaceful and best of all pain-free death. So she moved the date and they assisted her to die on November 1 a year ago. No one should have to face a decision like this. People like me who've already been assessed and approved are dying earlier than necessary because of this poorly thought-out law. And practically speaking you would make these requests in writing, right? And then it would be up to your family and your doctors to decide when the moment came.

Absolutely. So you have a power of attorney for health designated. And then it doesn't change just because we have made that person should have the right to say, Ron is ready. This is what we talked about. This is what he wrote down. Here it is. Now he wants to go. What do you think about the argument that this places such a heavy burden on loved ones and doctors to decide when exactly to follow through on these previously expressed wishes? So you did allude to this, but what if in a few years you seem happy and content,

even though you maybe can't take care of yourself, you can't dress yourself, and you don't recognize your family members, some of your signposts are showing up? Well, you see, that's a judgment factor I have to leave with my power of attorney. You can become a happy person in those latter stages. You don't know what's going on. You can't feed yourself. You're incontinent, but you lie there with a smile on your face. And when somebody comes in, you don't know who they are, but you smile at them. You deal with the conversation as it might be or not, but you're happy. You look happy.

Well, if that's the case and people want to keep me around in that situation, fine, fine. I'm not going to argue that. But knowing that I could be anything of the other side where I won't be happy, I could be the point where I'm paranoid when somebody comes in the room. I can become verbally abusive and scream and holler whenever I see somebody. Even though I see that care person every day, I could scream and holler and try to fight them off. I don't want to be physically restrained. So it's under those really negative things I don't want to live. But if I'm happy and purring away there like a pussycat,

well, I suppose people can say, well, that's all right. Okay. And what about the argument that some people could be taken advantage of here, that maybe they could be pressured to agree to this because they're made to feel like there'll be a burden down the road? Take me right out of the issue right now. We have people who are facing grievous conditions right now, and they really are having a lot of difficulty living, let's say, through these last stages of stage 4 cancer. So in this case, it happens between the physician and the patient.

Well, sometimes that patient brings in a family member to help them make those decisions to understand what's going on. Well, I'm saying that's what happens now without the MAID legislation. I see MAID as similar to any other kind of medical procedure or treatment. Right. It's no different. Do you feel that this is a decision made between an individual and an individual's doctor? Absolutely. Private and confidential. Do you think that there are any specific safeguards or rules that should be put in place for advance requests to address some of these concerns?

For example, a mandatory psychological assessment. Well, now we're getting into another issue. That's the determination of the physician as to whether his patient is capable of making a decision. So to me, it's a physician's judgment and a patient's judgment. They have to work together on this thing. And to create what I call bad law to try to prevent stupid decisions is even worse. Are physicians going to make bad decisions? Are people going to make bad decisions? Yes, they are. That's what life is about.

We do have colleges of physicians who look at new ways of judging things and treating things and so on. And we have their colleges to deal with infractions or stupidity, but you can't deal with that with stupid law. Bad law is the wrong way to go. We need a law that protects the rights of the individual. We need a law that protects the rights and the opportunity for the physicians. And you cannot replace responsible judgment. You cannot replace caring with bad law. I don't understand that, you see. And to make it direct as I can,

right now we have legislated a thing called Do Not Resuscitate. This is a form. You go to your doctor. You discuss it. He gets the form from, or she gets the form from the government, and you discuss it. You want it.

Your doctor agrees with it. You sign it, and that's it. What's the difference we've made? Can you see, though, why, for some some people that seems more clear-cut? Like if you do nothing in that moment, you'll die naturally. But for people with dementia or Alzheimer's like you, it feels murkier to have to make this tremendously huge call without having you there and present to be able to consult with?

I really don't see the difference at all. None whatsoever. In one, you're talking about the withholding of treatment. Here, I'm talking about the provision of treatment. I'm saying that under these conditions, I want treatment. Treatment happens to be medical assistance in dying. And what I'm trying to say is that's a right that we have as a Canadian citizen. I want to have access to that. This is my decision, personal, with my physician, personal, professional. We should do it together in exercising our joint judgment. professional. We should do it together in exercising our joint judgment. Ron, thank you so much for talking to me today. I'm so appreciative and thank you for being so open.

Okay. You're welcome. I'm very pleased to have the opportunity. Thank you. So before I let you go today, I want to tell you about some news out of Russia. On Wednesday, President Vladimir Putin proposed a set of constitutional changes that could lead to him staying in power even after he leaves office in 2024. After that announcement, Russian Prime Minister Dmitry Medvedev resigned, along with the entire Russian government. We've talked to CBC Moscow correspondent Chris Brown before about Putin's grip on power. So we thought we'd give him a call today to get a real sense of what's going on there. Hi, Chris. Hello, how are you?

Hello, thanks for joining me. So can you give me the gist of what changes Putin is proposing? So they're just changes. But the idea is that the Russian president is really all powerful, especially the way that Vladimir Putin has held the job. Nothing goes on in this country, in its political sphere, without his say-so. So the idea is that these powers would be devolved away from the president in the future and down to the parliament. And the parliament, in theory, would have the right to pick a prime minister, would have the right to pick cabinet ministers and so forth. And so that would be a fairly significant departure for Russia.

Now, why would he do this if he was going to be president? That's a very good question. That is the question I have. Why? It leads one to the conclusion that, in fact, he doesn't plan to stay as the president. His term ends in 2024. Legally, by law, he's not allowed to run again. And yet he's saying he's not going to change that part of the Constitution.

So it leads one down the path of suggesting, well, he's going to be giving off this job to someone else and there'll be a much weaker president than what he was. And perhaps there'll be this new prime minister job for him to jump to that's kind of been beefed up. Or maybe something else will come out of this constitutional wash that they're doing here and there'll be some other office. But the idea will be that Putin will still remain the most powerful guy in Russia, even if he's not the president. And then why this announcement now? If he's still president until 2024, why does he want to weaken that office? Well, it probably wouldn't happen right away.

It would only happen, obviously, when he was good and ready for it to happen. It's a good question about why now. There are a couple of ways to look at it. Russia's economically is not doing as well. And so perhaps this may change the channel somewhat. The other thing is Dmitry Medvedev resigned, as you noted, and that's a big deal. As prime minister and head of the Duma, he took a lot of the flack for some of the poor economic times that Russia has fallen under. So Medvedev is gone. It gives Putin a chance to put someone new in, which he did, a guy that no one knows called Mikhail Mishustin. And I even needed to go look him up because no

one knows who he is. He was an obscure tax official. You know, the question, too, is why did Medvedev quit? And why did he take the whole cabinet with him? Right. And is that a surprise? Well, it is a surprise, at least to everyone, but maybe not to Vladimir Putin. Maybe they orchestrated this or maybe Medvedev was angry that his, you know, this job as president that he coveted might not be the same thing when, you know, Putin's gone and he quit. But, you know, we don't know. Russian State TV certainly doesn't seem to know. We've been watching their programs and they barely mentioned, if you can believe it. That, you know, might lead you to believe that there's more here than meets the eye. Okay. Chris Brown, thank you so much. All right. Thank you, Jamie.

All right, that's all for today. I'm Jamie Poisson. Thanks so much for listening to FrontBurner and talk to you tomorrow. For more CBC Podcasts, go to cbc.ca slash podcasts.