Organ Donation and Transplantation in Canada — Dr. Joseph Kim and Sandra Holdsworth

Alex Maheux:

Hi, welcome to the CHIP, the Canadian Health Information Podcast. I’m your host, Alex Maheux. In this show from the Canadian Institute for Health Information, we’ll give you an in-depth look at Canada’s health systems and talk to patients and experts you can trust. Join me as I go beyond the data to find out more about the work being done to keep us all healthy.

The COVID-19 pandemic has added a layer of complexity to almost every level of health care in Canada, and one of the areas where that impact is being felt the most is organ donation and transplantation. A new CIHI analysis revealed that the percentage of people in Canada who received a solid organ transplant decreased 14% in 2020. This system is facing additional challenges due to other key factors as well. 

On today’s episode, we’re talking with Dr. Joseph Kim, nephrologist and co-chair of Health Canada’s Organ Donation and Transplantation Collaborative Data System Working Group. We’re also talking to Sandra Holdsworth, a liver transplant recipient and an award-winning advocate. We’ll hear more about what it’s like inside and outside the system, and what could be done to help save more lives. 

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Dr. Kim, welcome to the CHIP.

Dr. Joseph Kim:

Right, thank you for having me.

Alex Maheux:

Sandra, nice to see you. How are you doing today?

Sandra Holdsworth:

I’m good, thanks, Alex.

Alex Maheux:

Dr. Kim, let’s start with you. You’re a renowned expert in the field with many years’ experience in organ transplantations. And to help our audience kind of set the frame for the conversation we’re about to have and to get a bit of a better understanding of the complexity of organ donation in Canada, can you explain some of the key challenges about the field?

Dr. Joseph Kim:

Yeah. Thanks for the question. Organ donation and transplantation, so although they are 2 distinct activities, they are intricately linked, of course. And at the end of the day, what the system tries to do is to provide glycemic organ transplants for patients who need them. And so, the system overarchingly supports that effort. So in order to do that, however, we need organs, and that’s where the donation system comes in. We need a mechanism to deliver those organs. That’s what we call an allocation system. And then finally, we need a way to get those organs in to the patients and make sure they’re functioning well; that’s the transplant system. And, you know, transplantation, donation transplantation as an entity has existed for several decades, but really came to the fore as a really viable treatment option for people with end organ failure back in the mid ’50s when the first successful human-to-human transplant occurred between twins. And that was done at the Peter Bent Hospital, which is now the Brigham and Women’s Hospital in Boston. But these twins turned out one of them had kidney disease and the other didn’t and it worked out quite well. And then from there, we moved on to treatments that we could use to try to prevent rejection and we’ve evolved to the point whereright now, really, transplantation is the standard of care for patients with organ failure. So be it with a kidney failure, liver failure, heart, lung, pancreas and so forth. So really it’s become sort of the main staple in terms of treatment, and patients thrive and do very well for years and years and years after transplant. It’s very, very gratifying. It’s one of those 2 things to be happy about coming to the hospital. One is to have a baby and the other is to get a transplant. And so, it is really generally a very happy thing.

Alex Maheux:

Well, on that note, I’ll turn it over to Sandra. Sandra, you have lived this personally first-hand. At the age of 18, I believe, you got some pretty difficult news. Can you tell us a little bit about your experience with organ donation and transplantation?

Sandra Holdsworth:

Yeah, thanks, Alex. Actually, I wasn’t 18, it was from the years I was 18 till I was 28 that I was seeking what was wrong with me because I knew there was something wrong with my body. And I had seen various doctors, I was working in Toronto, but when I landed up working in my home town in Aurora, I needed a new family doctor, and that’s the one that retired yesterday after 32 years. So, she, I guess when I did my history, she was like, "Oh, my, I don’t want to be another doctor that can’t help this girl." So she ran every single test possible and my liver test came back abnormal, and she did the best thing that she could have done, she referred me down to the Toronto Liver Clinic run by Dr. Morris Sherman at the time. And at that time, I was diagnosed with a rare liver disease, primary sclerosis cholangitis, and over the period of the next few months, I was also told that I had the disease that is sometimes associated with it, Crohn’s or Colitis. 

I still have the note that Dr. Sherman drew for me that indicated by the time I was 40 or 50, I would require a liver transplant. So at 28, that seems forever. But, unfortunately, that wasn’t the case, and that’s what happens with liver disease, we don’t know, like, how long it takes to progress. So I found myself seeing the transplant team and some of the things that Dr. Kim just talked about. I think because I had my transplant in 1997, I benefitted from the experience that had happened before, but also the development of new medications. 

So yeah, I woke up in ICU after my procedure. I think it was sort of funny when Dr. Kim mentioned about you go into the hospital for 2 reasons, to get a liver or to have a baby. But one of the things with liver disease, is you get Ascites. And Ascites is a buildup of fluid, so you look like you’re pregnant. And, you know, one of the reasons why I was fortunate to have got my transplant at a young age is I was hoping that I could go on to have a child.

So when I got there, actually, and the emergency people asked me if I was there to deliver a baby, and I said no, I’m here to deliver a liver. So as far as my liver is concerned, I mean, I’ve been really, really grateful. I could my blessings every day, I’m so thankful for the team. My Crohn’s disease wasn’t so great, which after many years of different medications, I ended up getting a permanent ostomy. But as far as the transplant team is going, my transplant’s been very successful, to the point that I’m not even followed by the team anymore. I see a regular doctor here close to Barrie, and yeah, and I’m celebrating 25 years in February.

Alex Maheux:

Congratulations! Let’s dive a bit more deeply into the problems surrounding the systems and some of the barriers that exist in getting people like Sandra the organs they need. We talk about supply and demand, some of the clinical barriers, what patients and families have to go through in order to get there. Dr. Kim, I don’t know if you can speak a little bit more detailed about what the major challenges are?

Dr. Joseph Kim:

You’re absolutely right. When we think about the main challenges in donation transplantation, we usually think about organ availability and the fact that, you know, there’s not enough organs to go around for patients who need them. Fortunately, there has been a lot of efforts in Canada and elsewhere to really ramp up donation activity. And so, Canada has done a much better job in increasing donor availability over time, although of course, the COVID-19 pandemic has had its own negative impact, unfortunately.

There’s also, of course, living donation, especially kidney and liver, which allows us to expand our opportunities for transplantation for patients who need a kidney or liver, and UHM in particular is a world leader both with a donor with kidney and liver and so a very important way to sort of expand that. But what still continues to be a major hurdle is the availability or organs.

The other issue that one has to consider is the compatibility of organs. And it’s not as much an issue, interestingly, in a liver, but it is more of an issue in kidney where not only does the blood group have to be compatible, but you also have to have a immune compatibility. And so, sometimes, especially if a person has had a prior transplant or received blood transfusions or other blood products, or in women who has had prior pregnancies, these are opportunities for one’s body to interact with other people’s cells or proteins. And as a result, the immune system develops immunity against it and it can actually recognize an organ from someone else that kind of looks like themselves as a problem and reject it right away. So this is where the compatibility piece is important. So sometimes that can be a limiting step. But again, Canada’s been at the forefront of this.

So for example, in the context of living donation, if you have a willing and medically eligible living donor who is not compatible with you, we now have a system that’s administered through the Canadian Blood Services that allows us to share kidneys across the country. So we have a network of what we call the kidney-paired donation. A system where, for example, my donor can give to someone else, and that individual’s donor can give to someone else, and eventually a kidney comes back to me as well as part of a chain. It’s a remarkable innovation which we’ve pursued now for, I think, over a decade, and it has resulted in hundreds of transplants that would never have occurred. 

The other major challenge I think that we see, and I will speak to the system issues and let Sandra speak to the challenges that patients and families encounter as well, which are very important. The last part I’ll speak to is the issue of transplant and making sure these transplants function as long as possible. 

So, our goal in transplant is to essentially give back the lost life years of a person with organ failure, with a transplant. So effectively to mimic the lifespan of someone who would not have otherwise have organ failure. That’s the idea. But, unfortunately, there are factors that potentially shorten the lifespan of the organ. Be it immune related or infections or cancers or heart disease. So this is another major challenge that we struggle with that we are particularly sort of trying to improve, and there are technologic and treatment advances that we sort of brought to the fore that is helping to do that and so that the longevity of these organs has improved remarkably over time. We have patients who are 40-50-year survivors with these organs, and we hope that we could do that as now a standard for the vast majority of patients over time. But it continues to be something that we need to work on and we need to improve.

Alex Maheux:

Absolutely. And you talk about the fact that we have a new network, we’ve made tremendous progress in being able to match the organs to those who need them, but nonetheless, patients spend a lot of time on wait lists. Sandra, I’d like to ask you, you were on the wait list many years ago, what was that like waiting to hear when you would get an organ?

Sandra Holdsworth:

Well, it was challenging. As I tried to explain, I think that for patients we are sort caught up on, like, what I call a rollercoaster where we’re just, you know, we’ve got this diagnosed, we know we need a transplant, and you’re just going to see the doctor, you’re dealing with issues as they come up. But I think we don’t realize the impact that it has on our caregivers and our loved ones. And I noticed that, like, you know, when my mom broke down the day of my surgery, my husband had a, you know, when I was high on the prednisone and life and being alive, you know, he was still on this rollercoaster. 

So, you know, back then the list wasn’t as much. Like, it was still over 100 people waiting for a liver transplant, and I still read in the newspaper about people not living. I remember a woman writing about her husband passing away. Lots of people offered to donate their liver to me, but there was no living donor program at the time. And it’s also too, like, you know, at 28 you really want to fight for survival. So, you know, you just go every day, you deal with the issues that arise. But it also weighs on you because there’s also the thought that you have in your head that someone’s going to die. Like, someone’s going to die and the family is going to be disappointed. 

But, you know, my 9-year-old niece at the time, she really came up with something really cool. It was around this time, it was Christmastime, and I wasn’t able to participate in the family events, I was in bed lying down. And she was 9, she came into the room and she said, "Aunt Sandra," she asked me what was going on, and I said, "Oh, I’m in lots of pain and I need a new liver." And she says, "Well, you know what?" She says "When we drive home, we drive by the cemetery. I’m going to ask my mom and dad to go in there and get you an organ because they’re just sitting there."

And I thought, you know what? Here’s a 9-year-old that basically gets it. So I’m thinking, like, who am I to think that I have control over life and death? I don’t. And, you know, that night I thought about it and I thought, you know, if they came to me and said, "Sandra, I’m sorry, there’s nothing we can do for you," I would have accepted that because I did come to a peace, but I wasn’t ready. I was ready to fight, and I did. And so I’m so thankful for my donor every day. I think about them. I work with a lot of donor families and that, but you know. And sometimes, like, you know, now when I started sharing my story, it triggers those emotions. But it’s good because it makes you value life and I think that’s important.

Alex Maheux:

I can’t imagine the mixture and rollercoaster of emotions that come along with that. Dr. Kim, I also think there’s obviously a tremendous impact on the personal lives of not only those who are waiting for organs, but for their families and friends and networks. What’s the impact on the system of having patients on wait lists?

Dr. Joseph Kim:

Yeah, it’s far-reaching. So obviously, you know, the patient and the family experience is paramount and we always put that at the centre of everything we do. But certainly, patients who wait on a wait list for an organ, they are sick individuals, and so they continue to need to access health care for various complications, for problems.

For example, in the context of kidney patients, you know, they continue on dialysis, and that’s an important treatment, but a huge cost to society. And also, not the most ideal treatment, so patients can move right into problems with infections with their lines and other problems. And so, if we can get transplants to them sooner, we can avert a lot of these problems earlier. So there is no doubt there is a tremendous burden on patients and families, but also the health care system at large. Also, the care providers, the providers that, you know, do this day in and day out who want just to be able to deliver the best care to patients. And not being able to do so in a way that we feel could be of the greatest benefit to the patient is something that, you know, weighs heavily on providers as well. So we’re always trying to look for ways to get the best treatments possible to patients. And the issue of sometimes the scarcity of organs, which leads us to not be able to transform the lives of these patients with transplants like Sandra in a timely manner, is a tremendous stressor in some ways for us as well. But, of course, of pales in comparison to the experience of the patients and their families, but let alone the system includes everyone. And I think, as you suggested, having patients wait for organs has implications across the board.

Alex Maheux:

Mm-hmm. You talk about stresses to the system, unfortunately, I have to bring up COVID. Sandra, what has the last almost 2 years been like for you as a transplant recipient living through a pandemic and all of these stresses that come along with that?

Sandra Holdsworth:

Well, there’s some good and some bad that’s come out of COVID. I’ll start with the good, because there’s so many bad. The good thing is, for transplant recipients, is that the general public I think have more of an understanding of what it’s like for a transplant recipient’s lives. Because a lot of the things that we’re doing now, like going back to the basics of washing our hands, wearing a mask, you know, not going to work when you’re sick and stuff like that, those are things that transplant recipients have had to do. 

You know, I used to get so frustrated with people. I worked in a small office and my boss would come in with a cold, thinking she was some kind of warrior, and I’m like, "No, please stay home." And you’re also conscious about germs. There’s a lot of people that, you know, after their first 6 months they’ll wear a mask on the subway or that to feel more comfortable. You know, and I’m 25 years out, you know, you use your hand sanitizer. Whenever I’m out during the months of October, November, December, January and February, I have gloves on. I don’t touch anything with just my hands. And so that’s the good thing that comes out.

The sad things is though, there seems to be a lack of empathy for people who immune compromised and our elderly, which is upsetting. The other thing is, is that our doctors didn’t do these transplants for us to sit at home and be isolated. We’re a community, we’re a family, and we thrive on being together. And our mental health has really been affected, and not just, like, the whole society, and that includes our doctors as well. Because, you know, when we see Dr. Kim says the program is put on hold, I don’t think we realize, like, you know, you can’t be human and not have an impact of watching people on the list and not getting the transplant. Or, you know, seeing young people pass away because they couldn’t get the transplant in time. And unfortunately, that happens way too often.

I’m going to take a moment to talk about data and what I would like to see. I think the data would be important when we look at what we call patient-reported outcomes, because we want to be able to look at mental health as a whole. And my goal is to be able to have as part of the transplant procedure, that not just the organ going into our body, but let’s look at it as a dose of mental health, exercise and nutrition, because we aren’t just our organs, we’re holistic, we’re our whole body. And that’s something that I’m trying to change, and that’s where the data is important to find out, you know, how many patients have PTSD following transplant? How many patients have anxiety leading up to their transplants? And also, what’s the impact on the caregivers? So that’s really something that I as an advocate and as someone who is involved with organ and tissue donation and research, those are the things that I would like to see addressed.

Alex Maheux:

Mm-hmm. I think that’s incredibly important. And I would like to actually ask Dr. Kim how he handles that, seeing the wait lists, and especially during COVID with surgeries on hold, how that has impacted you?

Dr. Joseph Kim:

Yeah, I mean, certainly this is what we do and so not being able to do it is hugely impactful. And again, really, our focus is, you know, let’s deliver the best we can for our patients, so we can’t do that. It really is – really does have a negative impact across the board.

I will say, you know, that for during the first wave, there was so much uncertainty around what this virus could do, how it would affect our patients and our health system at large. So we had to take radical steps to ensure the safety of our patients and health care system at large. But in subsequent ways, because we learned quite a bit from the previous waves, we were able to put in sort of safety provisions to allow us to continue to do transplants. And so, we have been able to sort of maintain that more or less across even the third and now, of course, our fourth wave. We’re trying to make sure that we continue to provide that service.

One of the key issues, Alex, that we have to remember is that transplantation is not an elective procedure in the sense that, you know, it’s just come in any time and do the procedure. It has to be linked to the availability of an organ. And once that organ cannot be used, remember, it’s time limited, so if the system can’t receive that organ and allocate it appropriately to a recipient because, for example, it’s a shutdown and so forth, we’ve lost those organs forever, right. And so, that’s really, really important. And as Sandra said, you know, once that opportunity is gone for us, the potential recipient can’t leave the waiting list. That’s it. And so we’re waiting for the next one, we don’t know when that next one’s coming. And so, this is why we’ve made the case very strongly that, you know, transplantation, donation transplantation must – we must try to continue doing it even in the depths of a pandemic, as safely as possible, but understanding that not doing so it doesn’t mean just delaying things, we’re potentially losing opportunities that will never come back again. So, we have been very, very vigilant about that and we’ve fortunately been able to safely continue to proceed and our hospitals have been supportive of that despite all the stresses. But, you know, we’ll have to see what happens with the whole province and everything that’s happening. But for the time being, we’re marching forward. We just want to make sure our patients continue to benefit from transplants. 

Alex Maheux:

Mm-hmm. You’re doing incredible work. And, Sandra, you touched a little bit about this, the importance of data. You both sit on many advisory groups talking about the challenges of modernizing data to better set up our systems and kind of facilitate how the system is set up, essentially. I’m wondering, what’s the current state of data in terms of organ donation and transplantation, and what are things we can do to help improve it right now?

Sandra Holdsworth:

I’ll answer quickly and then I’ll leave it for Dr. Kim to do the rest as far as how it affects his job. But for me as a patient, I looked at CIHI for over many, many years. I use it for what I refer to as my advocacy work about bringing awareness to organ donation, because, I don’t know, it just seems to be something that transplant recipients, it’s their way of giving back. Especially when, you know, we don’t know who our donors are and we just, you know, we don’t know who to thank, right. So the information on there is amazing, being able to share how many people are waiting, how many organs were transplanted. And I really like the fact that CIHI is doing things that I consider more patient and layman friendly, because you’re doing infographs. And so I’m all about knowledge translation and I think infographs and putting things in an executive summary that’s easy for someone to look at, then the general public will get more information on it and they’ll understand it. So that’s from the patient perspective, but I would think that Dr. Kim and the transplant team would use the data a lot more effectively for other things. I’ll let him address that.

Dr. Joseph Kim:

Thanks, Sandra. And I wouldn’t say necessarily more effectively, but certainly we use it for a lot of things. And I think data is central to everything we do in any sphere, but in health care, certainly we want to make sure that our decisions are data-informed. Now, the question is then how do we sort of collect that information, manage it and use it effectively?

There is pockets of excellence across the country where certain centres and organ donation organizations do a really good job around these issues. But there has never really been a really systematic, coordinated effort across the country to bring that together in a way that allows us to see and view the system at large in ways that we haven’t seen it before. And so, certainly, a registry does exist that has existed since the early ‘80s, the Canadian Organ Replacement Register under CIHI, which is functioning in that role, but I think, you know, it’s well recognized that it’s time for a revamp and a rejuvenation, so to speak. It has served its purpose really well, but I think, ultimately, we can now move forward with sort of a new system that allows us to capture sort of the kinds of data that don’t just matter to decision-makers and frontlines, but also a standard set to patients. So how do we think about ways to make data easily understood in informed decisions beyond not just the care team, but beyond that? And so making, as we say, democratizing data in a way that makes it accessible and understandable to a much larger stakeholder group, I think is going to be critical. And so the work right now in the Pan-Canadian Data System work that work that doing and through the Organ Donation Transplant effort will really help us, I think, move that forward, and that’s a major focus for us.

Alex Maheux:

Mm-hmm. And hopefully we can start to share more awareness even on things like the podcast today too. I have a question for both of you. Sandra, I’ll start with you. What’s something you would want a doctor to know about your experience that you maybe haven’t had the chance to say before?

Sandra Holdsworth:

Well, sometimes, unfortunately, transplant isn’t always a cure, because unfortunately, sometimes depending on the disease that we have, the illness will come back. But that’s something that people need to understand, that it’s not because the organ failed, it’s sometimes these diseases just show their ugly head again.

I also want them to realize too, as I indicated before, that when I had my Crohn’s, I used to, you know, you go to the transplant team and, you know, they say, like, if it was kidney, your creatine’s fine, you know, your numbers look good. Or your liver, all your liver numbers are good. You’re good. And then you walk out, but I don’t feel good. I’m in pain, I don’t have the energy, I don’t feel, like, I’m not happy. So it’s like, what else is going on? And this is what I said before, like, the program is so – sadly, the program is so busy that the practices of just doing the organ and the allocation and getting someone transplanted and following up with them the first 6 months or even up to a year, is so heavy that I think it’s more like putting the other things onto our primary care providers, but also for the transplant team to understand that those things are actually happening and that the other things that happen, for example like getting high blood pressure or diabetes or muscle atrophy, like, or having constant back pain. Like, I remember saying I have back pain and my family doctor, or maybe it was the transplant team, "Well, visualize yourself, you know, you’re part open for your liver transplant, no wonder why your back’s gonna hurt, right?" Like, and my operation was only three-and-a-half hours, compared to what some are a lot longer.

Alex Maheux:

Dr. Kim, what’s the message you’d have to your patients about your side of the experience?

Dr. Joseph Kim:

I think the most important thing that I hope patients understand and also can really sort of appreciate, is that we really do want to be partners in their care. You know, no longer are we in the days where the physician is the one telling you what to do and, you know, you just have to follow it for your best interests. We know that doesn’t work and we know that that’s not – we use the term patient-centric all the time, but you really have to understand what that actually means. I think what it means, really, is to consider the needs, the experience and the overarching sort of wellbeing of patients as the north star for what we do in health care. We like to think that we do that all the time, but as Sandra said, you know, we get very busy doing the everyday things that we do to ensure that we’re delivering care, but then frequently as a result sometimes the stuff that really matters to patients gets kind of drowned in that. So I think we just have to keep reminder ourselves of that and letting patients know, look, we sometimes need some reminders as well. We’re partners in this, and so good partners keep each other accountable, but at the same time, it’s collegial, it’s collaborative, and that’s the best way I think therapeutic relationships should work, is that it’s a two-way street.

Sandra Holdsworth:

I work with Entera Health Teams, and the quadruple aim includes that whole partnership, and the only way that health care is going to move forward is to realize that we are partners in our health care. And that also involves our primary caregivers and, yeah. 

Alex Maheux:

Sandra, thanks for being here with us today to share your story and for your incredible advocacy work. And Dr. Kim, thanks for helping us understand how the system works and how we can move forward in improving it.

Sandra Holdsworth:

Thank you very much for having me today. And Dr. Kim, it’s been a pleasure. And thanks to CIHI for everything that you do. 

Dr. Joseph Kim:

Thanks for having me, appreciate it. And my thanks to CIHI for everything that you do. You’re an amazing organization and I’ve worked with CIHI in my capacity as the Board of Director of the Canadian Organ Replacement Register for almost a decade now, so I’ve really had a lot of great interactions with the group. 

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Alex Maheux:

Thanks for listening. Check in next time when we bring you more valuable health care topics and perspectives.

If you want to learn more about CIHI, visit our website: cihi.ca. That’s C-I-H-I-dot-C-A. And if you like what you heard, subscribe where you find your podcasts and give us a follow on social media.

This episode was produced by Meagan Foreman and our Executive Producer is Jonathan Kuehlein. 

I’m Alex Maheux, talk to you next time.

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