Not all organ donation stories have a happy ending

0:00Ryan Reynolds here for Mint Mobile. The message for everyone paying big wireless way too much. Please for the love of everything goodness world, stop. With Mint you can get premium wireless for just $15 a month. Of course if you enjoy overpay no judgments but that's weird. Okay, one judgment. Anyway, give it a try at MintMobile.com slash switch. A front payment of $45 for three month plan equivalent to $15 per month required, intro rate for three months only, then full price plan options available, taxes and fees extra, feeful turns at MintMobile.com. This is a CBC podcast. Hello, I'm Matt Galloway and this is the current podcast. When a very sick person finds an organ donor, the stories can be inspiring and hopeful stories like that of Stephen Gillis, a Vancouver. Gillis was diagnosed with a rare kidney disease in 2018 after years of living with Crohn's disease. He desperately needed a transplant and Michael Tagen gave Gillis that gift of a lifetime, but the pair ended up with the ultimate prize.

1:00We're really close. It's an unbelievably close friendship like a brother and will always be intertwined and I'll just be forever grateful. But as the ad campaigns tell us, there are never enough donors. 90% of Canadians say they're willing to donate their organs. But only a fewer registered. What are you waiting for? Get registered. It's easy and it's free. Leave a legacy. Be a hero. Save life. These narratives are unsaving lives and miraculous surgeries leave out one very important part of the story according to my next guest. Anita Slamenska's sister was on the waiting list for a liver transplant throughout her 20s. She was suffering from liver disease, eventually ended up in the intensive care unit being kept alive by a ventilator in the hopes that a donor would be found. And then that didn't happen. Anita Slamenska, who is now a postdoctoral researcher at the Research Institute of McGill University's Health Center, has written a book about her sister's story and what it says about the imperfect reality of organ transplantation.

2:02That book is called Other Endings, organ transplantation and the burdens of hope. And Anita is in our Montreal studio. Anita, good morning. Good morning. Tell me about your sister, Shana, and your relationship with her. Well, Shana was one year older than me and we were very close. She was kind of my role model when we were little. And when we were very young still, she was 11 and I was 10. She started having kind of mysterious symptoms, health issues that weren't really easy to understand what was going on. But she was eventually diagnosed at age 11 with an autoimmune liver disease called a chronic autoimmune hepatitis. That was kind of the beginning of her journey with chronic liver illness and it was progressive. How soon did you realize that she would need a liver transplant? When did that kind of come onto the radar?

3:05I think when she was around 19 years old and at that time, so we grew up in Saskatchewan in Saskatoon and she had moved to Toronto to go to university because she was very ambitious talking with school and so she was in Toronto and she had different doctors, newer doctors and they actually changed her diagnosis to primary sclerosis and colonitis. And I think it was at that time that we were told that, oh, yes, probably in around 10 years, she'll need a liver transplant. And so it was at that point that that just kind of entered into our minds that this was what her life was going to involve. It was going to involve a liver transplant. You read in the book that at that point, you viewed liver transplantation simply as a mechanical procedure to replace a broken down part. Exactly. I had no sense really of what it really meant. I think maybe it was part I didn't want to know potentially, but I just did think that

4:08it was inevitable that it was going to happen and that it was going to be relatively simple. And you also really never thought, again, you write this in the book, you really never thought seriously about the shortfall and the shortage of organs, right? No, I didn't. I mean, I knew that that existed. I knew that that was an issue, but I just, I never, it never occurred to me that she wouldn't get a liver transplant. What did the doctors say about the likelihood that she would get that liver? I think everybody was acting as though it was going to happen and that it was only a matter of time. There wasn't ever really a serious discussion or not a serious discussion that was kind of where there was an open acknowledgement that it might not happen. There's a story that you tell in the book about a transplant surgeon who is talking about getting the best possible liver for her. People talk about, we're going to get you a good organ, right? What, what, what happened then?

5:09There was a, I have a very distinct memory of meeting one of, meeting one of the transplant surgeons on the team and, and she saw Shana and she said, oh, we want to get the best possible liver for you. And then she said, you know, this is kind of one of the difficult memories that I have. And then she said, gunshot wound to the head. And, and I remember at the time, it kind of registered with that really meant, but I think for me, as I was thinking about it now, like over the past 20 years, you know, that I never really fully considered all of the implications of organ donation and that, you know, a lot of what are considered to be good donors, you know, from a, from an organ transplantation perspective, actually die really tragic and potentially violent deaths, also accidental deaths. So it's really hard, I think, as patients and families to really carry that weight or

6:10to acknowledge that, because it's, it's, you know, it's quite hard to, to think that, that your life and the continuation of your life actually is dependent on, on someone else's tragedy. But for you to get that, that good organ, somebody else has to die. Mm-hmm. Yeah, and then also I think part of it was not recognizing that we can talk about organ, organ shortage or an organ shortfall, as though it's just not enough people signing up to be organ donors, but that's actually not really the major contributing factor to a shortage of available organs for transplantation. It's actually more about, you know, how many people who die actually have organs that are healthy enough. A viable organ. A viable organ. Exactly. So there's the willingness, you know, people, people tend to see organ donation in a very positive way, you know, as an act of kindness, as an act of generosity, but that, that doesn't

7:11mean that you're actually going to have, like, a medically suitable organ to donate. There are living donors as well, where the person doesn't need to die, to donate an organ that there are ways to donate an organ as somebody who's still alive, was that, was that an option for her? We'll see, this was, so this story, these events actually took place 20 years ago, even a little over 20 years ago. And I think that at the time, living donation for livers was still very new. So at the particular center where she was waiting for a transplant, they weren't doing live liver donations and transplants at the time. And then I think it also was the case, if I remember correctly, that, you know, because of the way that her illness progressed, in the sense that it progressed very rapidly towards

8:11the end of her life, I think that she was so ill at that point that I think that there were concerns that getting a live liver, which is only a portion of a liver, that your body, I guess, can survive with just a portion of a liver, that that would have made her recovery harder because she was so, or that potentially it wouldn't work. So my memory is that that wasn't encouraged. I think that now, it's different, it's much more widely practiced, there's more awareness around it for people who need liver donations to explore that possibility of having a living donor also. As you said, things escalated very quickly. I mentioned in the introduction that she ended up in the intensive care unit. Even when she went into the ICU, though, there was a sense of hope, right, that a liver could be found. The idea that we had or the hope that we had was that she was just being maintained, you know, in the ICU, and then there was going to be a liver that was available in time,

9:18and then there would be a successful transplant surgery, and then it would be kind of happy ever after. Yeah, we weren't accepting. I think there was a lack of acceptance around the reality of what was going on at that time too. She was keeping a journal when she was in the ICU. Can you read a little bit of that for us? Sure. I also just want to clarify too that she herself wasn't keeping the journal because she was not in a condition to be able to keep a journal, and so it was something that was mostly updated by me. Okay. This part that I'm going to read, it's from the very first journal entry that we put, that we put up. It was an online journal, so that it could be shared. This was something that she dictated to me from her hospital bed, and I wrote it down. She wrote, this past weekend in the ICU was very strange.

10:19I found myself quite unrecognizable and quite scared. Because my liver is so on the edge at the moment, they have eliminated all pain killers and sleep aids that are metabolized through the liver or the kidneys, and I find myself in more physical and mental anguish than I have ever known. I continue to hold all of my doctors in trust and realize just how much their hands are tied as well, as they acknowledge with all variety of bedside manner, good and bad, how they are asking, incredible, perhaps two incredible things from me. I trust them as they prepare for the still very much hope for transplant surgery. What's it like reading that now? Well, it's quite sad for me because that journal entry was actually really kind of the last record of her thoughts, because soon after that she was intubated, she was kept in a

11:20chemical, chemically induced coma, so we had no way of communicating with her, and she had no way of communicating with us. Yeah, so they're kind of like, I kind of want to say sacred, because it has that kind of finality to it, like, oh, these were her. This is the final record of her final thoughts, and I think it's all the more painful because I think one of the things that has been hard to come to terms with about her death is that we did lose contact with her, and we did, by the decisions that we made, and we, I'm saying, we very broadly as like the family, the medical team, everybody. We did kind of deprive her of having a say in what was happening at the end of her life, and I know that, you know, now there's like more awareness to about kind of advanced planning and stuff like that, but we never had those discussions, but we just went kind of full steam ahead with all the interventions that were possible at the end of life, and, you know,

12:22it led to a very particular kind of death, I think, that is where you're left kind of wondering or questioning what it was really like for the person who died. Is that why the chapter is titled, die waiting? What does that mean to you? Well, so this, I realized, I used to describe, you know, what happened to my sister as she died waiting, as opposed to just, she died, or, you know, or my sister died, you know, in 2004, and I think that what I realized by that phrasing, die waiting, is that there was always this acknowledgement of this kind of happy transplant story in that phrase itself. It was always kind of gesturing or pointing to this idea that, you know, that it was this, there's this kind of that she was kind of locked or frozen in this other story that didn't happen, and that wasn't her story, and that it wasn't my story either.

13:25And that even in her final days, it's as though the doctors thought that a transplant was possible. Do you say that her final days were measured in terms of viability for a future transplant? That's what I remember. I mean, I think that's also a representation of what, you know, her family and friends were preoccupied with, you know, when the doctor came, you know, it was so exciting to like, and what do you think is it going to happen? Can it happen? Could it happen? And that's all that we really cared about, I think. And so that was us not realizing, not kind of acknowledging or honoring the fact that she was dying, there was this kind of perpetual denial of death. So death was a taboo. It was completely banished from anything we ever spoke about or, or, or, I mean, I can't speak for what other people were thinking, but for me, I know I didn't think about it. So that was, yeah, that was very obvious after the fact.

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15:36This is really hard to think about, and even years later I'm sure it's really hard to talk about. But how much do you think she thought about the possibility that she would die without having been on the receiving end of a transplant? Yeah, see, that's where I feel like I feel really not good about not giving her the space to talk about that or acknowledge that or speak about that. If that was something she needed to talk about. Because she wrote the two little notes towards the end, right? Yeah. Can you say what those notes were? So this would have been before she was in a chemical coma, chemically induced coma, and she did write a note to the nurse when she put new liver question mark. Because I think she realized she was in the ICU and I think she wanted to know if she was post surgery or not. And then the other one, she wrote, sister, can I see her? And that was her last note, actually, to the ICU nurse.

16:41That's really hard. Yeah. I think it just reminds me that we were cut off from each other. At the end of her life, there was this severing of our contact. And that we thought it was for the best because we thought she was going to get a transplant and then everything was going to be okay. But then now it just feels like, like, yeah, we left her kind of abandoned almost. It feels a little bit like that to me. I mean, I think for anybody who has been around somebody on life support, it feels very inhuman. It's hard. One of the things that you did after your sister died was start researching some of the messaging around organ donation and how to improve the number of donors out there to ensure that people like your sister, perhaps, wouldn't die while waiting for an organ. As you started doing that, you became disillusioned with some of the messaging that was out there. Tell me a little bit about that. Well, it wasn't so much disillusioned with the messaging around organ donation.

17:44It was when I slowly came to the realization of how naive I was, really, that I really thought that we could increase organ donation just by having more people sign donor cards. And then when I actually was trying to understand what was really going on, I'm like, oh, it's not really like that at all. And in fact, people had been saying for decades that it's really more about what's happening in hospitals, our potential donors being identified in hospitals, are there all the resources and education even in place to know how to facilitate donation and stuff like that. So I slowly realized that I didn't think that messaging around organ donation was actually a very useful area of research at all. And so it was disillusionment, but it was also kind of profound enlightenment at the same time.

18:45And one of the reasons why I mentioned messaging is because in that messaging, they talk about hope. This is a gift. You can provide hope to somebody. Why do you think it sounds obvious in some ways? But why is there such a strong emphasis on hope when we talk about organ transplants? Well, that's, yeah, that's a really good point. And I think there's hope in medicine broadly. That's kind of like the dominant attitude around Western medicine. You know, this idea that we can hope that advancements in science and technology in medicine will kind of solve our problems and that kind of thinking that that's very compatible with, I guess, kind of hope and it's kind of more moral dimensions as well. And so, but I don't want to deny or to suggest that hope is misplaced in any way, because

19:46I do think that hope is very important and I do understand the hope that's associated with organ donation and transplantation and that continues to feel very real to me. The part that I was trying to kind of create a conversation around was, but what are we not talking about? And so that's, and just how can we, how can we expand or think of other sides of organ donation and transplantation so that we can talk about hope, but that we can also talk about and acknowledge stories in which, you know, that don't kind of meet those expectations or that don't result in those happy outcomes and to try to create a space for that as well. You tell the story of an American transplant doctor, Bud Shaw, who wrote a memoir about the work that he does, but also a sense of ambivalence around that work. Tell me, what could we learn from that doctor? I loved that book and that was something that was very exciting for me to find and read

20:49and the way that he puts it. So he's a transplant surgeon who, who retired and then he wrote the book about his experiences as a transplant surgeon and he said that, you know, that he has all, like, he's critical that, you know, of all this talk of heroism and being treated like a hero called everything because he doesn't know what to do with the kind of negative, the memories of the negative experiences that he has and he says that he likes to think about the highs of his career and of which there were many. But then the way he puts it is that it's not the whole story and that really struck me and I think that that was what I was trying to do as well. It's like, what is the whole story and why are we limiting what people know about it? Why are we insisting that people look at it through this kind of rosy lens all the time because I think it can be really alienating for patients, it can be alienating for families and then also it can also be hard on the clinicians too.

21:53Why don't you think we tell the whole story? I mean, is it just because we like a good story and we like the idea of hope and a hero who don't eat something and the person survives? Or is there something else that's going on? Well, I think it's that for sure. I think we like those stories. I think it just broadly we like Happy End. Like the whole Hollywood ideas that there's always a happy ending. But I do think that it is part of this way that we think about science and technology too about solving problems as part of it as well. Like we want to, and whether that's just kind of like hubris like that we have, that we can come up with these medical innovations or technical innovations that are going to solve all of our problems too. There have been extraordinary advances to that point in transplantation, surgery, in terms of the numbers perhaps of organs that are yes donated, but also perhaps dealing with weight times.

22:54Your sister died a couple of decades ago. What have you seen in terms of, as somebody who's researching this and following this? Are the numbers getting better? No, I don't think that they are because I think that for reasons that there's more and more people being added to weightless all the time, that that side is growing. And then I think that it really also comes down to the advancements in transplant medicine. I mean, there's been advancements in other areas of medicine too. So for instance, how we deal with traumatic brain injury has improved also. And so, you know, brain death being the kind of preferred, I guess, condition for and under which people can donate organs. And so taken together, I don't think that it's like, oh, all the benefits of a crew to transplant medicine, I think we're all living longer lives. There's fewer accidents, cars are safer. There's more kind of occupational safety standards. And so fewer catastrophic accidental

23:56deaths. So all of these things, I think, have made it more stagnant than as far as transplants. You could imagine that there are people who find themselves in the situation that your family did who will take things from this book in terms of how to think about what they're going through and how to carry that burden of hope. What about for the people who are treating patients like your sister? What would you want them to be thinking about as they do their work? Yeah, that's a, you know, I think probably, you know, thinking about the kinds of conversations that they have with patients and families, maybe more open and frank conversations around expectations. To talk about death and dying. To talk about death and dying, you know, I think that that's already been recognized as something that is not done well by a lot of clinicians that they don't like talking about death and dying, that it's difficult. But at the same time, you know, there's a lot of expertise in that also

24:56particularly from palliative medicine. So there is the knowledge about how to initiate and have those kinds of difficult conversations with families. And so I think it's just about recognizing when is it maybe appropriate or important to have those kinds of conversations also. And to tell the whole story. Yeah. How do you remember your sister now when you were talking about her earlier, you could hear like you had a big smile on your face as you were talking about her and talking about how you looked up to her. How do you think about her now? Well, much in the same way, I still, I still, I'm kind of seeking her approval all the time because she was always, she was very bossy with me too. And so I just, I miss that. And I think I think to kind of replace her, which I can't do. But I like, I've sought out a lot of kind of mentor or like big sister, like people in my life, because I like to have the guidance. But yeah, I miss, I mean, I miss her a lot. It's still kind of a mat unimaginable to me that that we're not together anymore.

25:58This book is, is a powerful tribute to her. But also, I think as I said, a good guide for patients and for doctors in terms of how to think about something that we often call, I mean, it's, they call it the miracle of life. This is, that's the tag phrase that is often applied to these, the gift of life and the miracle of life. And there's more to the story that people might want to think about. I need to thank you very much for this. Oh, thank you so much. Anita Slaminska's new book is called Other Endings, Oregon Transplantation and the Burdens of Hope.