When Healthcare Delay Makes Death Feel Like a Choice (Ep. 52)

[00:00:00] This episode of The Benefit Whisperer is brought to you by Route 3 Insurance and Financial Services, where smarter benefits begin. If you're tired of rising healthcare costs and opaque insurance contracts, Route 3 is here to help you take control. They specialize in transparent, employer-driven benefit strategies that protect your people and your bottom line. Ready to break away from the status quo? Visit www.fixmybenefitsnow.com

[00:00:26] and discover how Route 3 can help you build a plan that actually works for your team and for your budget. Canada and the U.S. have very different healthcare systems. In Canada, and full disclosure, I am Canadian, care is publicly promised, but sometimes people still have long waits. There are limited private alternatives and gaps in home care, mental health, disability support, and palliative care.

[00:00:50] In the U.S., care exists, but sometimes it's blocked by costs, denials, pro-authorization, narrow networks, or medical debt. Different systems, but sometimes they have the same human result. People feel trapped. In Canada, when assisted death enters the environment, we have to ask a hard question. How free is choice really made under pressure? I'm Ralph Weber. I'm the Benefit Whisperer.

[00:01:17] Today, I'm talking to you about a program called MAID, M-A-I-D, Medical Assistance in Dying, and what Canada's experience can teach us about delayed care, safeguards, vulnerable people, and those left behind. My guests today are Dr. Ramona Coelho and Amanda Ochman. Dr. Coelho is a family physician and author of a BMJ article in Supportive and Palliative Care.

[00:01:46] It's a paper examining the safeguard failures in Canada's MAID system and caregiver pressure, fear of decline, inadequate palliative care disability, etc. Amanda is the founder of a program called Dying to Meet You, a project, and I watched your Kiwi Down Under podcast. It was very interesting. It is a project that focuses on preventing euthanasia and encouraging hope.

[00:02:12] She's worked in journalism, advocacy, public policy, and including advising a Canadian member of parliament on the concerns around the expansion of euthanasia and people living with disability or mental illness. Amanda, Ramona, welcome to the podcast. Thanks for having us. Yeah. So I want to start off by, you know, talking, you know, before I ask the first question a little bit about my personal, you know, experience. And this is something that, you know, I was one of the people left behind.

[00:02:41] My mother, during the pandemic, living in Canada, she had high blood pressure, treatable hypertension. She was on medications by her family doctor and her naturopath. She waited seven months to get an echo. And then after that, another four months to see, not even to see, to speak on the phone with a cardiologist. Cardiologist changed all her meds, said that she had to lose 15 pounds just in fluid retention.

[00:03:09] And then after about a month, she called back and she wasn't responding to the meds. And she said, you know, I'd like to see the cardiologist. And she was told, well, it'll be another year. Now, this is in a small, well, not that small a town, a city in the interior of Okanagan Valley with about 250,000 populations. It was a long wait. Shortly after that, she was offered the MAID program. And she said, well, I just want to get treatment for my, you know, blood pressure.

[00:03:38] And they said, well, you know, you can wait a year for that. But then they encouraged her to use the MAID program. It ended up being a 13-day wait. I'm speaking as one of the people that was left behind. A system that where you have to wait 11 months for care or 13 days for MAID, that's really a question that I personally can't get over. First, these are some of the things that I want to talk about. But I want to get your perspective.

[00:04:06] Mona, first of all, when you hear about that timeline, 11 months to get care or 13 days to get MAID, what does that tell you about how the system is functioning? Now, I know it's not the same everywhere. I got to give that disclaimer. Yeah, Ralph. I know in larger cities, you know, it's better than in rural areas. But all in all. Sorry, first of all. Like, I have to say that I'm very, very sad to hear about what happened to your mother. Thank you.

[00:04:33] I think it's horrendous that someone could be started on meds and then have no ability to have any follow-up with their specialist. That is not acceptable. And I would say that that is a very common experience across Canada. So I'm in Ontario, so I'm in a different province than your mom. And I have spoken about how it takes my patients, potentially like six months to a year plus, to see the pain specialist over a year, often to see a neurologist or most specialists.

[00:05:02] Super specialized psychiatry, so when someone's suffering or has wishes to die, and they have complex needs, can take years. That is not acceptable. In Ontario, our coroner releases the time to connect with the MAID team, and it's two days. And so I've had patients who, before I could even try to set up, for example, home supports for a new kind of, a new illness that they would adjust to if they had time. They have been approved for MAID within two weeks, just like your mother.

[00:05:32] So there is something really wrong with the program across Canada. I agree with you that probably some areas have better practice standards, my understanding, potentially Manitoba. But most Canadians, I think, are experiencing something similar to what your mother experienced. Because BC, Ontario, and Quebec have very, very high rates of provision and have a lot of MAID assessors and providers who will do it. And yet we're strapped for chronic care specialists, for physiatrists, for mental health care,

[00:06:03] and even for your mom, for a cardiologist. And, you know, as I said, my mother had a treatable illness. It wasn't addressed as early as it should have due to lack of access. And she was seeing both a family doctor and a naturopath. I don't know about Ontario, but in BC, a naturopath is outside of the system, the public system, and they can prescribe. But that person was not giving her good advice.

[00:06:30] He said, take your hypertensive meds two to three times a week. And I said, no, mom, no, no, no, no, no, no, no. You can't do that. It's an everyday thing. So that was... You know what's very interesting about that is that when you have a doctor who won't see you, you lose trust in the system. Right. And so then having a naturopath who's available for you, I understand your mom's decision. And I think Amanda actually can speak a lot. She's interviewed some patients who've had similar experiences of MAID being raised to them.

[00:06:59] But the other thing I wanted to point out before I turned over to Amanda is that you said your mom received MAID within 13 days. That means that she was grouped under track one. You're saying that she had no reasonably foreseeable natural death, potentially except for her age, which is not actually a criterion on which we're supposed to judge MAID. So it also speaks to that part about the lack of safeguards that are handed over to Amanda. Right. Well, thank you. No, I kind of thought that.

[00:07:27] I don't know what the benchmark is. Maybe 14, but still, I mean, it's crazy. Yeah. Like, what is the normal... What should be the waiting period? So there are... Amanda, do you want to take this or do you want me to just finish explaining and then you'll take over? Okay, great. So basically there are two tracks that are illegally allowed in Canada. Track one is not for people with terminal illness. It's a bit broader than that. It's for what we call reasonably foreseeable natural death.

[00:07:56] And some MAID providers, and this also speaks to the lack of precision, some assessors have said that that's months or weeks, and other assessors have said that's up to five years. And there's no legislative clarity. And so you have a lot of intercessor ability, variability, but basically that's an end of life, let's say, pathway. And that pathway, you can actually die the same day as you request MAID if there are two assessors who were there to assess you and do it.

[00:08:23] And so actually we've written a report from Ontario about same-day deaths and some of those cases, which I can share later. But the second track, which happened in 2021, is for people with disabilities who are not dying, who have no shortening of their life. And there is only a 90-day. So still, even for the timelines I was explaining to you, there's only a 90-day period to try to remediate that suffering before you can end their life.

[00:08:50] You can always do more, but a lot of people die in that time frame, and that's not enough time. Yeah. So in that 90 days, you said something about specialty psychiatrists could be a year or more. If it's something where the waiting time is more than 90 days, and you're only given 90 days. Well, if you have a good MAID assessor, they will wait longer than the 90 days. I see. Okay. But you can have a MAID assessor who, and we've written about these cases where they don't seem to do a deep dive of suffering.

[00:09:20] They don't feel like it's their business to have to fix a broken system. And so in a sense, they're allowed people to die for things that are actually remediable, the things that are actually terrible. Okay. Amanda, I want to, you know, feel free to jump in on any of those comments, on your observations. But I want to ask you as someone who talks about hope, death, cultural renewal, and what happens to families left behind, such as myself, when the system treats MAID as a solution?

[00:09:50] A solution may be in that person's mind because they don't have, they don't feel they have options. But the family, how about the families and the isolation? And during the pandemic, of course, it was worse. And that was part of my mother's problem was during the pandemic. So she felt trapped. Yeah. I too am very sorry to hear of the circumstances of your mother's death.

[00:10:12] And as you refer to MAID as a program, I feel really compelled to share that it's not much of a program at all. Rather, it's a declaration of defeat. It's basically patient abandonment because what is really being offered? Death? Death doesn't take work or interest or curiosity in the patient and what they're going through and how they can flourish and live well until they die.

[00:10:42] It says there's nothing we can do except end your life with a lethal injection in 15 minutes. This is not care. It's not health care. It's not adequate. And it is, for this reason, always an injustice to the person. Nobody deserves to be met with this lack of curiosity, this lack of attention, especially in a moment of particular vulnerability.

[00:11:06] So that is the most painful point is that it is a policy of abandonment and a declaration of defeat that does not give anyone what they truly deserve to be met with, which is a look of love that says, no, it's good that you're here. A founder of a hospice and palliative care, Dame Cicely Saunders, had this beautiful expression where she said, well, you matter because you're you and you matter until the last moment of your life. MAID is the exact opposite of that, which says maybe you don't matter anymore

[00:11:35] or you've stopped mattering to us to the extent that we're just going to capitulate and say that there's nothing we can do when there's always something we can do. Even if that something is loving, showing attention in small details, alleviating pain, providing a form of presence in whatever the circumstances may require. So during the pandemic, it required a lot of creativity. Now, when it comes to families, I think this is where many people are not paying attention yet

[00:12:02] to the social cost of euthanasia and to how euthanasia actually, and we use different terms, euthanasia, assisted suicide. In Canada, the term MAID was intended to encompass both euthanasia and assisted suicide. The distinction being euthanasia is where the doctor or nurse directly administers the life-ending drugs. And assisted suicide, which is the only of the two that's in the U.S., is where the person has to self-administer.

[00:12:29] Well, for the last year for which we have data, according to Health Canada, 100% of those 1,499 Canadians who died by MAID had gone the euthanasia route. They had the doctor or nurse do it directly. And we can see why, because there's this kind of mutual outsourcing of responsibility where the patient says, I'm simply undergoing a medical procedure, and the doctor or nurse says, I'm fulfilling the patient's wishes.

[00:12:55] So important points, and I think that's also why the numbers in Canada are just so high as they are, because of the high trust that we ordinarily place in our doctors and the authority that by virtue of the profession is duly wielded and yet is being eroded, sadly. Now family members are, as you put it, and as you've experienced, being left behind. And I have been hearing from more and more families who, step by step,

[00:13:24] are willing to come forward and share their experiences. However, it's difficult because some are met with the accusation, you're being selfish. It's not about you, which is adding a further wound to the already traumatic experience. And so that's been a basis for some hesitation in speaking out. Step by step, more are speaking out. And this deserves our attention because there's a social cost, there's a ripple effect in families, this creates complex grief and intergenerational trauma.

[00:13:53] So for example, just last week, I was doing an event in Sherwood Park in Alberta, and an adult granddaughter was sharing the story of how she adored her grandmother. They had so many warm memories together, a splendid relationship. And so when this woman had her first child, she named her daughter after this grandmother. And it was such a joy. They had the experience of creating many new memories together. But then this grandmother opted to die by maid.

[00:14:23] And it threw this woman into a whole consternation over what then is the legacy for her daughter after whom this woman is named. How did she then hand on the legacy of so many memories of so many warm moments, but the final decision was this very devastating one that, of course, this mother would not hope for her daughter to see as part of the legacy she is called to inherit, as part of something connected to her deepest identity, to her very name.

[00:14:52] And so I think as we tell these stories and as people begin to share, we're beginning step by step to see the consequences. And I try and exhort those to whom I speak to consider the lives that they affect. Our lives are not our own. We have such an impact on others. And yet when we're suffering, we close in on ourselves. It's natural. We lose that horizon of transcendence about how we belong to one another. So that's understandable.

[00:15:20] But then that's where good care and real accompaniment steps in to revive the awareness of just how much we do really belong to one another. Yeah, absolutely. I couldn't agree more. And my mother was not suffering. And if somebody was in just insufferable pain and had zero quality of life, any loss of quality of life that she had was because of isolation during the pandemic. That was it. And during the pandemic, unfortunately, I couldn't even,

[00:15:46] I didn't even have an option to bring her back to the States where she could have gotten care. So she just felt like, you know, and I think a lot of older people feel that they're a burden, even though they're not. I mean, we're their kids. How can a parent ever be a burden to a kid when we were a burden, when we were in diapers? You know, I mean, it's kind of payback time. Anyway, wow. I, you know. Health Canada reports show that in general for MAID, most people suffering from,

[00:16:15] their suffering is loneliness or feelings of being a burden. And that really throws to question, is this really about choice and autonomy? Like, just like you said, right? If you feel like you can't ask for help, you have your community, you're isolated from your community, and you feel like you're a burden, that's really like self-loathing driving to the States. It's the opposite of autonomy. And as Amanda said, it's a societal failure. Yeah. My mother fell over once, you know, years before she died.

[00:16:45] And it was slippery. She slipped on the ice. You know, it wasn't anything other than that. She hit her head. And then she had her phone with me. She sent me a Facebook message. And I said, Mom, why didn't you call me? Well, I didn't want to disturb you. And that's how, you know, grandparents, that's how older people sometimes think. I don't want to be a burden. And to this point, it's important that you respond in such a moment. What disturbs me is the lack of calling.

[00:17:11] For example, nothing would burden me more, I think we need to say, than you going through with euthanasia. We need to flip the script and emphasize that the real burden, the real disturbance is the lack of engagement. And that a lot of times, as you pointed out, it is the projection where people think that they're a burden, for example. But I think, in fact, that feeling like a burden, concerned about feeling like a burden, is a bit of false humility sometimes.

[00:17:39] And the reason I say that is because nobody who's worried about feeling like a burden wants anyone else to agree that they are. Nobody wants anyone to concur with that. Right. So in that way, it's a little bit. And yet there are some families where maybe the person is really getting the message that they are a burden, or they are feeling edged out of people's lives, and then that's a separate matter.

[00:18:05] But I think that's why these questions are so deep and so experiential in our hearts. There's not one single silver bullet response. That's why many times people say, well, how do I prevent this person or this person from seeking euthanasia? And I can never give a sort of totalizing answer that would honestly be irreverent. Instead, we have to ask, well, where's this coming from? And just ask good questions. What are you hoping for?

[00:18:32] What would you need for your situation to be different in order for you to feel differently about life, about your relationships? So what is most needed is a sincere curiosity that asks, what are you going through? Waits for the answer, and then attends to some of the details. Yes. No, absolutely. I couldn't agree more. So let's step back a little bit so that the listeners can understand the policy context. So I know that there are people that support me.

[00:19:02] They feel that they see it as sort of autonomy, dignity, relief from suffering. And there are others that worry that vulnerable people may be offered death before they're offered care as an alternative. Now, I remember one time when I was back in B.C. visiting my mother. I was in a government liquor store. And there was this elderly lady in her 90s. And she was buying two cans of beer.

[00:19:30] And she was in the lineup waiting to pay. And somebody was complaining about their back pain. And she said something like, well, just wait till you get to be my age. And then somebody in the line said, lady, you should be dead instead of costing the rest of us money. So I've seen sometimes where there's a resentment. Did you keep that person up? Yeah. Yeah, I did. I didn't completely. But I said, like, I did step on his foot.

[00:20:00] And I just said, hey, look, that is totally not appropriate. You know, I just, I felt so embarrassed, you know, about that. But when there are scarce resources and people feel that they have to fight for them and somebody is getting more than others because they're elderly, because they're sick, that's sort of a thing that I think people, I don't know how to put it. They just kind of struggle with.

[00:20:24] So for Ramona, for people that don't completely understand MAID, and I don't even know why they still call it Canada Health if this is one of the options they offer, because it's nothing about health. So how would you explain it, what it is today in Canada and how it's changed since it was first introduced? Well, I would say that it was introduced with a discussion that this was going to be an exceptional measure.

[00:20:49] I don't think it was legislative that way, but initial discussions were that there would be, for example, I used to live in Quebec, the province that kind of led the legislation on this in 2020. 2010, Gaetan Barret had said there'd be less than 100 requests a year for severe intractable pain that we cannot fix. We have 7% of deaths in Quebec now are from MAID, and they're launching an inquiry as to why 7% of all deaths are from MAID. In Canada, it's 5% of all deaths.

[00:21:19] In terms of the legislation, there's no due care requirement. In a sense, it's the opposite. You need to inform people of their options, but they don't have to be accessible. And just like for your mom, they don't have to be accessible to reach that cardiologist. They can just get made. The legislation has always been very broad, even in its inception in 2016. And you have also, it was very interesting because in the UK and in Scotland where these bills have just died,

[00:21:48] you had a very, very, I would say at least a more mature conversation about safety of vulnerable people. And in Canada, we have some very wealthy stakeholders and lobbyists who have kind of controlled the media conversation. So when you say that a lot of people are pro-MAID, I do believe that most surveys do show that most people are pro-MAID. But for example, there was a study that was done by the NIH, by Choi et al. That was published in BMJ Open.

[00:22:16] That showed that people who were surveyed said they supported MAID, but then when they understood the cases that MAID was being used for, they did not support MAID. Right, right. They did not understand what was happening on the ground. So I think that a lot of people do not understand that a lot of suffering in life in general, and a lot of reasons, this is not just in Canada, this is also in line with international data, that people made us sold as being about a physical pain that we can't fix,

[00:22:43] when usually people choose it for fear of the future, and fear of being a burden, fear of suffering. Things that if we cared to, as Amanda had shared, we could reach out with just community support and community light. As physicians and clinicians, existential therapy, helping people adjust is critical when they have new illness and injury. And yet now we are offering people MAID instead of those options. So for example, in Ontario, we had a dementia report.

[00:23:13] So people who are accessing MAID for dementia. And many of them were choosing it for fear of the future, fear of being a burden. But only 13% of them had access to any palliative care before they died. So palliative care usually would connect them with existential therapy to help them cope. But that's not happening. And so I think that people who think that there's some sort of utopia system where physicians get it right every time,

[00:23:39] and they will only end people's lives when there's no other options, it's far from that. Right, right. Yeah. No, how about the mentally ill? I heard that it was going to be offered, then it wasn't, then it was. What's the status on that? I just testified. Oh, go ahead, Amanda. I was just going to explain a little bit the legislation, then I'd love if you could share about your testimony. So basically, it's important to note that the law did pass expanding euthanasia on the basis of mental illness as a sole underlying condition.

[00:24:08] This law passed on March 17th, 2021, but has not been implemented. It passed at the same time that Canada expanded euthanasia to that track two that Ramona mentioned, persons living with disabilities, chronic illnesses or neurological conditions. That took effect immediately, but the government created a sunset clause and decided that it would take two years to assess how to implement euthanasia for those whose sole condition is a mental illness.

[00:24:35] That deadline approached, and at the 11th hour, they said, we're not ready, we're going to delay it by another year. And so that was 2024. And then again, it was delayed until March 17th, 2027. But it's important to note that unless there is a change to the law that will be implemented and take effect, and the law did pass as early as 2021, but those are some very specific and nuanced legislative distinctions.

[00:25:04] The only reason I could keep track of it is because I was working in politics at that time that that law passed. But now there are some updates with the committee, and Ramona can speak about its current status. So just wait, I want to get some clarification. So Amanda, are you saying that right now the law in Canada states if you have a mental illness, depression, bipolar, not necessarily something severe like dementia, which I'm not even sure if that is a mental illness, that's a physiological.

[00:25:33] But if you have a mental illness, the law in Canada states that you're entitled to have the government assist you in the MAID program, government-assisted suicide. And if nothing happens between now and about one year from now, May 27th, 27th, that's going to be a permanent law? It's described as an exclusion for now, saying that those persons would not be eligible until the law is implemented. Okay. And so it's been delayed, technically.

[00:26:01] But what I also would want to stress is that there are people with mental illness being euthanized. It's simply that they have a compounding factor rendering them. And these words are so sinister. Eligibility, as if we should speak about qualifying for this state-sponsored suicide program, basically. And so we do have to make the point that, yes, people who—and also everyone who's asking for euthanasia,

[00:26:26] everyone who is requesting MAID, is that not at least a sign, a cry for help, a sign of mental distress? If not a diagnosed mental illness, at least it's a form of suicidal ideation that deserves to be treated with suicide prevention rather than suicide assistance. But we've created this two-tier society where some people are met with suicide prevention and others are met with suicide assistance.

[00:26:49] But to go back to the use of this term vulnerable, it's not that we have a society where some people are vulnerable human beings and others are strong and powerful and invulnerable. We all have seasons and experiences of vulnerability in our lives. As the disability community sometimes puts it, we are temporarily able-bodied. This concerns all of us.

[00:27:11] And when we try and do these neat distinctions and compartmentalize illness and wellness and mental and physical, these are not very correct distinctions. Sure, sure. And not every illness has a—you can't take a blood test to get a blood count for even physical illnesses, right? Ramona, is that—like, how can you really— I'm not sure. You can't test for most mental illnesses.

[00:27:36] No, and actually, the head of CAMH said that last night in Parliament when he was asking the government to please stop this legislation. So I can share that, you know, in terms of developments like what Mando was talking about in terms of the legislation. Well, in 2025, the United Nations Convention on the Rights of Persons with Disabilities asked Canada to change its MAID program.

[00:28:00] They asked it to stop MAID for those outside the end-of-life context to not expand for mental illness and other changes in terms of oversight and tightening up Track 1. The International Association of Suicide Prevention in December of 2025 released a new statement saying that suicide and assisted suicide overlap. You know, there's a lot of people saying that this is totally different from suicide, but as Amanda said, there's overlap or there's potentially the same.

[00:28:29] And that we need to not forget suicide prevention principles for those at the end of life and those with disabilities. But especially for mental illness, when hope is always possible, there may be very few people who never recover. We can't even predict who they are accurately. So having a system that ends their lives will de facto end the lives of people who would have recovered if we had cared for sure.

[00:28:51] Even though, as Amanda said, we are having that right now because we have people who have disabilities, who have a depression, and a MAID provider decides to give them MAID. And that depression was reversible. So right now, Parliament is having hearings, parliamentary hearings, of which I was invited two weeks ago to speak at, where they have different experts across the country and they'll have some international experts come and speak about whether we're ready for MAID for mental illness.

[00:29:16] And what's very interesting is that the newspapers are full of stories about, because the lobby groups are getting upset and because they own the conversation, there have been some articles recently about how the parliamentary hearings are stacked with people who are against MAID for mental illness, when really the professionals across Canada are coming with basically a consensus that we are not ready because for MAID for mental illness, we lack services.

[00:29:44] There are many levels of care that need to be offered that we are not offering. We are failing Canadians. And you cannot actually say, I don't agree, like, this is not the point, the point, like, in terms of MAID for disability, like if someone has ALS, for example, one could say that they have an incurable grievous illness, which is supposed to be part of the legislative criteria of what you need to qualify. But you cannot even say that for a mental illness.

[00:30:08] With a depression, if you put a hundred or any mental illness, you put a hundred people in the room who look like they would never get better. We have suffered with them for years. Most of them will still get better and our predictions will be wrong. And so what would happen is you'd have therapeutic nihilism. Therapeutic nihilism is when the physician or clinician is staring at someone trying to accompany them, but is suffering as well and is kind of giving up hope, can drive the idea that maybe it would be better to end their life. But basically it would be giving into that nihilism.

[00:30:36] It would also essentially be discrimination because a lot of people have biases, including physicians, nurse practitioners against people of certain races, potentially sex or disability, ageism. All those things can play into unconscious bias in terms of who we think their lives would be better ended. And so it's actually a very dangerous legislation and hopefully will not go forward. Wow. That's, yeah, that's terrible. With my mother, her family doctor wouldn't even sign the order.

[00:31:05] Number one, for religious reasons, but also the Hippocratic Oath. First, do no harm. So he said, no, I'm not going to sign this. And often when someone has followed their patient, they want to protect them and they have a different kind of, yeah. Yeah. And so we often see this, that people are swooping in who don't have that relationship, who are checking boxes. Right. You know what it is? It's a flattening of someone's life. So people are very complex. They have many joys and they have many sorrows.

[00:31:34] But if you come in and see a snapshot of them at their worst or when they're only sharing their sorrows, you can flatten their life to their sorrows and think that you're doing a great mercy by ending their life. But really what you're doing is lacking the complexity of understanding the complexity and beauty of their lives, of the layers of suffering that could be addressed. You're missing out on so much. And that's why actually I think a lot of clinicians who are the chronic care providers are not comfortable with MAID. Right.

[00:32:02] And sometimes we have very bizarre questions as a starting point. And I just briefly want to mention how in the past, in the 90s, there was a notable case. It got international attention. It was the murder of Tracy Latimer, this young girl who was not able to speak verbally. She had cerebral palsy and her father killed her because he thought that she was suffering and he wanted to mercifully, in his mind, end her life.

[00:32:30] And the newspaper articles at the time asked, well, when is it right to kill a disabled child? A wonderful disability scholar in Canada, Dr. Heidi Jans, who lives with some similar disabilities to what Tracy had. And she says she was so understandably riled and rattled by that question, when is it right to kill a disabled child?

[00:32:54] And she says, how were they not even questioning themselves about whether it was right or wrong in the first place? They were asking when. And it's quite similar now with this question, when are we ready to euthanize people living with mental illness? As if it's a question of readiness and we're not questioning the fundamental idea. Is it ever right or is it always wrong to end the life of someone struggling with mental illness?

[00:33:21] So when we jump ahead with these when questions that preclude a deeper scrutiny of our fundamental attitudes, we really miss a lot. Yeah, no, I agree. I mean, it reminds me of an old cowboy movie where we would, our horse falls, breaks a leg, take out your gun and shoot him. Back in the Western days for horses, that was one thing. But we're not in the Wild West anymore. We're not horses. And we're not horses. Exactly.

[00:33:51] Yeah. Wow. Wow. No, I know that there is, there's a lot of worry. And I know that some countries have voluntary programs, but on the world stage, I wasn't aware that there were some and many other people. And it makes sense to me that people would jump in and say, hey, wait a second. This doesn't make sense. So let's talk for a minute about access. So, Ramona, you said that people have to be offered alternatives. Well, you don't have to do this. You could always, you know.

[00:34:20] They're supposed to be. But we have many, many, many patients and families who've come forward saying they were offered maid without alternatives. There was somebody who testified at Parliament three weeks or last week, Michelle Hewitt. His husband, Victor Enns, was quite depressed. The maid provider, her testimony is public and there's been an article written by Megan Gilmore in Canadian Affairs about it.

[00:34:43] But basically, when the maid assessor showed up, Victor was very nervous and trying to explain to him why he needed to be approved. And the maid provider said after 10 minutes, like, that's enough. I approve you. And the second person who came to the house showed up and said, I agree with the first provider. And most of it, the time was filling out paperwork. They never found out if they were track one or track two. But Victor had no terminal illness, so he should have been track two. And they never talked to him again until the day they ended his life.

[00:35:11] They never offered him any solutions or looked into what would remediate his suffering. I mean, that is one case, but there are many, many cases. So just to drive home that point that, yes, the legislation says that there should be an offering, but it's conditional on what the maid provider is aware of. So if the maid provider potentially has not done chronic care and learned those skills that sometimes and learned the pathways that we have to learn by being in that medium, then they might not even realize that that's a solution for that patient. Right.

[00:35:41] And even offering them alternatives when there's a shortage of doctors, especially some specialists. You know, how long does it take, for example, across Canada to get something as simple as an MRI in the provinces where you can't pay for them? Yeah, it varies. There's a document called Wait Your Turn, which I think tells you more details. But in Ontario, for example, it depends on the urgency. So, for example, if it's done through the emergency, obviously.

[00:36:09] But sometimes I have patients where it does matter. Like it's going to affect their sports career or it's going to affect their – they're going to decondition as they're waiting for that MRI for whatever. And so they'll just go to the States. But it can take several months. Right. Right. Exactly. And then after that, to see the specialist, you know, on top of it. I don't know if you remember.

[00:36:31] I remember years back there was this story about somebody who had – who was able to take their golden retriever in to an MRI after hours, you know, like with one day wait, when he was trying to get his mother in and it took nine months. Do you remember that story? I read about the vet, right, that they could get it. Yes. Yeah. The services were faster than they could get for their mother. I read that. Yeah. Yeah.

[00:36:56] So, you know, and I can see how that could lead some people to that feeling of hopelessness, you know, which it shouldn't. Makes you feel the system doesn't care about you, right? Because, you know, patients, like for example, you try to tell them, okay, like look, for this issue, the level of urgency is not considered as high as for something else. Like, well, for example, for a hip replacement, okay?

[00:37:20] Like if patients are waiting a year or two years for a hip replacement and in the meantime they're becoming weaker and more deconditioned, they're not able to function in their house, then they get their replacement. Their recovery is longer, harder. They might never recover to the level if they had been replaced quicker. You feel like the system doesn't care about you. And I've written about this a lot. These are coercive influences to die.

[00:37:44] There is even a bigger societal problem that I think Amanda deals with really well in her different podcasts. Is that what you would call it? Like you're dying to meet you videos? Yes. You know, you can't really deal with the existential and social. These are all, but together medicine is also not helping. We're like an added coercive influence to die and actually amplifying that abandonment that patients can feel.

[00:38:10] And I would also add that when people say that they want euthanasia for reasons of control or autonomy, it may very well be, and we can see all the cases in which this would be true, that nobody is taking care of them. Nobody is going to help them. It's not going to be fast enough. And so very often what a person is trying to do is to preempt hearing the words in one form or another, you don't matter.

[00:38:37] Because a person has to undergo hearing the words, you don't matter. That's too tragic to bear. So euthanasia preempts ever hearing the words, you don't matter enough to me, to us, to the world. We have to attend to that implicit coercion, as Ramona said, that and the unfreedom inherent in it.

[00:38:59] When people are rebuffing anything and saying, no, no, I'm good, I'll just opt for made, that is such a kind of self-protective defense because at least someone will be with you at the time. But it's a sham accompaniment because it's a very lazy accompaniment to only be there for the window of ending a person's life. It's not very serious. It's not serious medicine. It's not serious humanity.

[00:39:25] It's actually just very, very lazy and unprofessional to the core. For the doctor. For the patient. For the doctor. Of course. Of course. Yeah. This is the form of abandonment of the patient. By the... Only a time they feel they have. But that's, again, a societal failure. Right? That's the only choice that they had. Like, that's not really choice. Yeah. And I think that... The patient masquerades the lack of choice by saying, well, I'm asking for it.

[00:39:54] But we know, we know that if the circumstances were different, they would make a different choice. And that's why that's such a brilliant kind of suicide prevention question. What would need to be different in order for you to make a different choice? Right. And how that opens people up. Honestly, I use that question even with peers who are not in end-of-life situations because it awakens a soul to freedom and to possibility and to reviving them of their proper horizon. If your circumstances were different, would your life be different? Yes.

[00:40:24] Okay. How do we attend to your circumstances? Right. Yeah. Exactly. It can cost... Like, I've actually brought Canadian patients down, gotten them hit replacements for $18,000 cash. But if you go through insurance, if you go through the system, it can be as much as $84,000. And it could bankrupt.

[00:40:52] Now, yes, you might have insurance that kicks in after a certain amount. But you could still be out of pocket in the U.S. tens of thousands of dollars. So that is also a sort of a... It's not... Well, it is rationing in a way. You know, it's financial rationing because every minute in the U.S., a family goes bankrupt due to medical pills, not due to lack of access, due to costs. So it's a... I think socially, it has similar, you know, effects on availability of care.

[00:41:21] The problem is that in the U.S., the insurance skews it so much and makes it cost so much more. Wow. Any other thoughts that you'd like to add that we haven't talked about? We could go on for an hour, you know, I'm sure. But anything that you'd like to point out that we haven't talked about that I haven't asked? No, I thank you very much for having us. I thank you for sharing your mom's story. I'm so sorry, Ralph. Thank you. Well, for my U.S. listeners, this is not a direct one-on-one comparison.

[00:41:51] As I said, the American problem is different. The issue isn't the absence of private options. It's that care can be unaffordable or it can be delayed by prior authorization, by insurers, built in narrow networks, or followed by medical debt. In Canada, everybody's promised universal coverage, but there's an access problem. And you don't always have a private option for most medical needs. Is that correct, Ramona? No, you don't. No.

[00:42:19] So there is no way to pay cash for hip replacement. But both systems, you know, as I said, they have the same moral question. When the system makes it hard to get care, how free are the choices that make under pressure? I think, Amanda, you've made that point really well. Yeah. And I just conclude by saying that people deserve better. We deserve better. Your mother deserved better.

[00:42:41] And so let's raise the standards so that hopefully for all of those others who we love and for us, that there will be something better on offer than death.

[00:42:52] And while so many people devastatingly are left behind and have lost people to this, I am very moved by how when people share their stories and they open up, there is a way in which even the most tragic deaths are made very generous for the benefit of engaging these deep human questions that touch all of us. So there's a real touching kind of generosity and all of the families who are willing to speak and be so candid.

[00:43:22] And in fact, I find that the more that this happens, the more that people feel vindicated and validated in their particular grief, which everyone deserves as well, because this is not ordinary grief and loss. There's something extraordinary and unique about it. So that's a basis for, yeah, just encouragement that by having these conversations do get better for the long run. Yeah. You know, and I had lost other family members before.

[00:43:52] My sister when I was 11 in a car crash. My dad when I was 16, you know, because of cancer. Now, those were very different. You know, the car crash was not preventable. And, you know, the cancer was a long drawn out thing, but we knew it was coming. This is a preventable death. This is something that is done by choice and with intent and with premeditation.

[00:44:18] You know, and that's, I think, you know, like when we as a society start to normalize death as an alternative to treatment, I think that that's when we're facing a very bad, I don't know what the word is, Amanda. Like you probably could verbalize it better than I could. I think we're facing a steep cliff when we say that death is an alternative to care. You know, it's a path of least resistance.

[00:44:44] And it will ruin our whole culture, our whole society, because it will really devalue our neighbor, our other. We will be able to more easily see other people as commodities. Yeah. Exactly. Now, if people want to, Amanda, people want to follow your work or find out more, find out ways they can help. Two things. First of all, how can they find you? And secondly, how can they help? What's the one thing they can do? Sure. So check out dyingtomeetyou.com.

[00:45:13] And there are a series of vignettes of different people's stories. I try and highlight those who are the most affected and the least represented in our public conversations around this. And you can also contact me through that site or follow me on social media by just searching my name. And yeah, the main thing I would encourage is have conversations every day about topics of suffering, death, grief and hope. And you will be amazed at how much people want to talk. They want to share. You might think, oh, I don't want to burden people with this topic.

[00:45:40] But you will find, as I am sure you have when you have shared your grief and your losses, found an opening that people want to talk. So I would just, yeah, encourage people to be generous in sharing your own experiences. And it took me a long time before I could. It took, but then I came to the realization that I might be able to help other people, you know, not to suffer this pain. Ramona, how about you? If people want to follow you, find out more, see how they can help.

[00:46:09] And then the second part, what can they do to help? That's the one thing you would want them to know. I guess you can find me on Twitter at RLJ Coelho. Or I'm a McDonnell-Laurier Institute Senior Fellow. So if you just Google my name, we're from McDonnell-Laurier Institute, some of my writings will come up. But people have to do what they can do. So the answer will be different for everybody.

[00:46:32] But really, I think that the most important thing is that on a community level, that we start building those friendships, building bridges, trying to see who in our lives, who have we left behind, which neighbor needs a visit. I think that that's probably one of the most important things. One of our neighbors invited us for a Christmas party this year for the first time in years. And the whole street, we're like a two kilometer street got together. And I think there needs to be a lot more of that. Yeah. Yeah.

[00:47:01] Especially with social media these days, you know, like being trapped behind Facebook. And we've got to, and since the pandemic, we've just got to get out there. I couldn't agree more. Well, thank you both for being here. This has been very insightful. And I'd love to have you both back on another episode. Thank you for having us.