Should remote residents be prioritized for kidney transplants?

People with kidney failure who live in rural and remote areas of Canada do not have the same access to the full suite of dialysis modalities as urban dwellers. Many need to relocate for life-sustaining renal replacement therapy. Often this means moving hours away from their home communities for months, sometimes years, at a time.

In this episode, hosts Drs. Mojola Omole and Blair Bigham speak with Dr. Aaron Trachtenberg, a nephrologist at the University of Manitoba about his commentary in CMAJ, in which he and coauthors argued that patients who must leave their home communities for dialysis should be prioritized for the allocation of deceased donor kidney transplants.

They also speak with Vanessa Tait whose father needed to relocate to Winnipeg, twelve hours away from his home community of O-pipon-na-piwin Cree Nation, for dialysis. Ms. Tait became a living donor to her father in an effort to bring him back home. She talks about the toll relocation takes on patients from remote communities.

Commentary in CMAJ
CMAJ

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Transcript

Transcript: Should remote residents be prioritized for kidney transplants?

Dr. Blair Bigham:

Welcome to another episode of the CMAJ Podcast. I'm Blair Bigham.

Dr. Mojola Omole:

I'm Mojola Omole.

Dr. Blair Bigham:

So, Jola, today we're talking about a really controversial and interesting topic. We've got an analysis in CMAJ that is suggesting that people who live a long, long way from a dialysis center should be prioritized for kidney transplant. What did you think about when you heard that one come up in the story meeting?

Dr. Mojola Omole:

So I guess for me, I was really excited about it. I don't view it as controversial. I view it as radical justice, in terms of bringing equity into the practice of medicine.

Dr. Blair Bigham:

I was shocked to learn about what's going on, just presently, let alone what Aaron's provocatively suggesting that we do. Just the idea that people can't get dialysis when they're in end-stage renal disease because of their geography, or have to make these dramatic changes in their life. It was just shocking.

Dr. Mojola Omole:

Yeah, and later on in the podcast, we have a guest who's had to go through managing dialysis and ultimately transplant, who comes from a rural and remote area in Northern Manitoba.

Dr. Blair Bigham:

So we're getting into this conversation today because of an analysis published in CMAJ recently titled, patients with kidney failure who cannot access dialysis in rural and remote areas in Canada should be prioritized for kidney transplantation, by Dr. Aaron Trachtenberg and his colleague, Dr. Aviva Goldberg.

Dr. Blair Bigham:

Aaron, welcome to the podcast.

Dr. Aaron Trachtenberg:

Thank you for having me.

Dr. Blair Bigham:

What inspired this analysis?

Dr. Aaron Trachtenberg:

One of my first encounters as a medical student in third year medical school, when you start to go in a full history and physical, was with a woman from Northern Manitoba with kidney failure, who was hospitalized for something else, and she was making the decision to go back home and not do dialysis, and told me that she knew that meant she would die sooner than she maybe had to, but she wanted to be at home. And so that's just stuck with me throughout all my training.

Dr. Aaron Trachtenberg:

And as my career has developed, and I'm starting to do some extra training and some extra work with the kidney transplant group here, I started to think about what tools are in front of me at the current time that I could help chip away at this bigger problem, I think, of people having to move from their home communities to get the best care possible.

Dr. Blair Bigham:

In your article, you talk about some data out of Alberta that showed that people would be willing to give up six years of their life in order to get dialysis where they live and not have to move. I’ve got to ask, how often do people decline IHD because they're just not willing to leave their communities to move closer to a center?

Dr. Aaron Trachtenberg:

I know that in Manitoba, we probably have 40 or 50 people a year, maybe a bit more, that have to move into the city while hopefully waiting for a spot at a rural or remote dialysis center. I know that when you do have a chance to talk to these patients for a prolonged period of time and they're comfortable opening up, it is very hard. It's very hard on them, and it's also very hard to know that they're waiting for a spot that only opens up for two reasons. One is: someone gets a transplant. That's unfortunately pretty rare, and the other is: someone dies. So you're sitting there trying to go back home, knowing that you're waiting for someone else to die, and that takes a toll on people as well.

Dr. Blair Bigham:

Talk to me a little bit about how the prioritization is currently determined for getting that transplant. Is it just time on the list?

Dr. Aaron Trachtenberg:

So the current prioritization for transplants in Canada is determined on a province by province level, but they all follow a similar schema, which is trying to balance equity and utility.

Dr. Aaron Trachtenberg:

Typically, the heaviest waiting factor is how long you've been on dialysis, but there are other things such as your HLA or your immunological match that will factor in there, and then each province will have certain other overriding factors. Most places have a pediatric priority. Most places have some type of rule for medical urgency. So if somebody has, for example, lost all their dialysis access and they'll die imminently without a transplant, they can get priority, and then sometimes there's other types of priority based on, say, you were a living donor previously and now you need a transplant, that might get you some priority as well.

Dr. Blair Bigham:

So it sounds like in most places, balancing equality with equity for some populations, like for children.

Dr. Blair Bigham:

Tell me about the impact on your proposed approach on urban residents, for example, people who live in Vancouver or Montreal.

Dr. Aaron Trachtenberg:

I think that's a good question. That's obviously on our minds when we wrote it, and it was one of the questions that we got asked right away in the reviewing process.

Dr. Aaron Trachtenberg:

I can't say that it would have no impact on people that live urbanly. I think that impact would be small. I think that impact will depend on how you define the prioritization. Are you talking about people getting prioritized based on living a certain distance from any possible dialysis center? How are you giving that priority? Is it a dichotomy, you get bumped up, or is it multiplying their wait time by something? I've looked at some very preliminary numbers in Manitoba, and I think that we're probably talking about a handful of patients per year, so I don't think that it would make a huge impact or disadvantage on the urban dwelling patients.

Dr. Aaron Trachtenberg:

But ... now I want to choose my words carefully here ... but the difference between equality and equity, is acknowledging that we don't all start from the same place, and giving advantages to those that are disadvantaged, and when you have a finite, scarce resource, if you want to give an advantage to somebody, you will disadvantage other people. But what I'm saying is that the urban dwelling patients already have a lot of advantage, because they can much more easily access dialysis while waiting, and they're not forced out of their homes, and they're not experiencing that same threat to their overall health that comes with having to leave their home community, and so I wish that we had an unlimited number of transplants that we could offer to everybody, but when we don't, you have to figure out how to use them in the fairest or the most equitable way that maximizes their use, and I think that in the commentary, I laid out the ethical foundation to defend this.

Dr. Blair Bigham:

Are there other disadvantages to living in a rural area that make you more likely to end up with end stage renal disease, or in a situation where you become dependent on dialysis?

Dr. Aaron Trachtenberg:

Yeah. There's a lot of good literature about that. A lot of good stuff coming out of Manitoba done by a lot of my colleagues here.

Dr. Aaron Trachtenberg:

There's definitely a link, between being Indigenous and risk factors for end stage kidney disease. How much of that is related to geography versus other systemic disparities in the social determinants of health, depends on exactly what measure you're looking at. There's studies out there showing that Indigenous patients have difficulty accessing transplant, regardless of how close they live to an urban center, and then there's other studies showing that geography impacts more of the upstream factors, such as early nephrology care, preventative care management of diabetes, that leads to needing a transplant.

Dr. Aaron Trachtenberg:

I think it's no surprise. I think the CMAJ publishes a lot of articles and it's on their mandates that there's disparities in health for patients that live in rural and remote regions, a lot of those patients are Indigenous, and that kidney disease is one of the major conditions where you can see these patterns. That's why I make the argument in the article that this transplant prioritization is what I think we could do right now, but it's a tiny fraction of ... what's really needed is a multi-pronged approach to prevention, screening, treatment, and increasing access to dialysis, because not everybody's a transplant candidate.

Dr. Blair Bigham:

How come, when we talk about prioritization for transplant, why isn't this already put into it? If we already know that there already is a disadvantage to people in rural or remote areas in terms of accessing proper kidney health, so they do not need a dialysis, and then there's more disadvantage and more of the system is set up for them not to necessarily thrive within it. Why is that not already calculated into the decision-making of who gets a transplant?

Dr. Aaron Trachtenberg:

I'm just getting into the transplant world. I think that there have been a lot of excellent developments in the last many decades on trying to reduce disparities in access to transplant. I think that the change from wait time, beginning at the time of being listed to the time of actually starting dialysis, helped address disparities in early access to care. I can't say why it wasn't already in allocation schemas. I know that, locally, once I brought this topic up, I found out that it has been considered in the past. I think that this is just a step in an ongoing and evolving conversation and understanding of what equity really is, and that is not equality. I think that previous allocation schemas that used the word equity were really thinking equality, and there are studies in Canada showing that once you were listed for a transplant, if you lived remotely, or if you were indigenous, you probably had equal access.

Dr. Aaron Trachtenberg:

But what I'm saying is that's not really equity, because if you think about their overall access to all treatments of kidney failure that allow them to live a meaningful life, even equal access to a transplant in the face of unequal access to everything else, is not equity. If you want equity, you have to fix one of those, and the one that I happen to work in is transplant, and so I think that I can work on that in that corner, and I hope that everybody in their own little corner works on ways to fix it from their perspective.

Dr. Blair Bigham:

Aaron, this is so fascinating. I'm learning so much about this, and it's such a tricky topic.

Dr. Mojola Omole:

But let's be honest, is it complicated?

Dr. Blair Bigham:

What do you mean, Jola? It seems like the politics of this, the urban rural divide, how do we actually fix this inequity?

Dr. Mojola Omole:

Aaron, what are some of your thoughts about fixing it?

Dr. Aaron Trachtenberg:

Okay. So, I think it's complicated and it's not complicated. I think that this discrete problem of trying to help the rural remote divide and get better access to transplant, that's semi-complicated. It just means we have to figure out what the definition of rural and remote is, how we allocate it. The bigger issue of disparity is in access to all care, but in my area, dialysis, nephrology care, transplant care, it's as complicated as addressing any type of systemic racism is. I struggled with that concept for a long time, until I heard a definition from Murray Sinclair, which was, and I'll butcher it, but paraphrasing it, is that systemic racism is when you have a system built on historically or philosophically racist structures that lead to different outcomes depending on race, and it doesn't require any single individual to be racist. And in fact, it can force non-racist individuals to behave in a racist way.

Dr. Aaron Trachtenberg:

And I think that's present in the delivery of care to rural and remote communities. I just think that's true. I don't know how else to put it. I think that we are talking about a group of patients that experience these disparities based on where they live, but the reason they live there is rooted in racism and historical racism, and I think that part of the reason this whole topic really bothers me is because I just see it as another example of taking people out of their homes and out of their home communities, and it just bothers me. And it bothers a lot of people. I'm not unique in being bothered by this. I just would like to chip away at it, and I think there's a lot of people who would, and I think that the conversation is evolving, and this comes back to why hasn't it happened yet? Why haven't a lot of things happened yet? I think the better question is why not now? And let's just start chipping away at it.

Dr. Blair Bigham:

Leaving your home, leaving your community can be such a distressing [thing]... and just cause total upheaval for so many people. We see this, I'm just thinking about my own practice. People who stay at home, even if they live in an urban area, despite maybe it not being the safest place for them to live. The human will to stay in your community, to stay in home is so strong, and you're right. By forcing people to choose to leave in order to stay alive, because we can't offer them dialysis or transplant where they live, is really one of the greatest disparities that, in Canada particularly, we really struggle with, is getting everybody the care that they need.

Dr. Aaron Trachtenberg:

Yeah, no, I agree, and I think that the more we talk about it, the more everybody starts to also just agree that it is common sense. I'm doing some focus groups with patients on another topic about allocating kidneys, and several patients independently have brought up this idea of, well, maybe it should depend on where you live, and I think what was really inspiring about that interaction was, it came up organically, just by having a focus group with a patient that lived in Winnipeg, and a patient that was from a remote community and had to move. And they just got to know each other and they heard about it, and then the person from Winnipeg said, "Obviously that person should get a transplant sooner than me because I live five minutes away from my dialysis center."

Dr. Aaron Trachtenberg:

So I think it isn't that complicated, and it kind of is commonsense, once you're exposed to it, and once you think about it.

Dr. Mojola Omole:

That's awesome, Aaron. I actually had a tear in my eye, that was so moving. Thank you.

Dr. Aaron Trachtenberg:

Thank you.

Dr. Blair Bigham:

Aaron, this is truly inspiring and humbling. Thank you so much for joining us today.

Dr. Aaron Trachtenberg:

Thank you.

Dr. Blair Bigham:

Dr. Aaron Trachtenberg is with the Department of Internal Medicine at the University of Manitoba.

Dr. Mojola Omole:

Vanessa Tait's family lives in O-Pipon-Na-Piwin Cree Nation, in Northern Manitoba, which is about 12 hours from Winnipeg. When her father's kidney health declined, he needed to travel to Winnipeg for dialysis and therapy. To put that in perspective, that's like a patient in Ottawa needing to drive to Moncton, New Brunswick for treatment.

Dr. Mojola Omole:

Vanessa, thanks so much for joining us today.

Vanessa Tait:

Thank you for the invite and the opportunity to be here.

Dr. Mojola Omole:

So can you just tell us a little bit about when did your father's kidney health start to decline?

Vanessa Tait:

On October, 2017, my dad actually had his first biopsy of his kidney, and at that point, his kidney function was already at 15%, so you can also see even screening for kidney disease is a little later on for First Nations patients, because we don't have the proper facilities in our own First Nations communities.

Vanessa Tait:

He actually came out to Winnipeg for kidney school at the end of November. Upon his return home, he started getting really sick, so then on November 29th, in 2017, he actually went to the Thompson General Hospital, the Emergency, and upon that time he was getting very sick. He went into an induced coma, and then on December 3rd, 2017, probably about five days later, he was life-flighted to Winnipeg. Emergency dialysis was administered at that time, and he had to, I'd say, within 24 to 48 hours, I can't quite remember the timeline, but there was about 19 liters of fluid that was removed from his body.

Dr. Mojola Omole:

And once he started, once he was able to leave the hospital, where did he stay to continue the dialysis?

Vanessa Tait:

So knowing that he was having to go into hemodialysis after he would be discharged from the hospital, we knew that he had to stay in Winnipeg. There was no way to go back home, or to even go to Thompson Manitoba, which is the nearest location to my community to get dialysis treatment.

Vanessa Tait:

So by that time we were just looking for an apartment and we kind of said, "Okay, well, where is he potentially going to have dialysis?" And so we wanted to find an apartment near there. So we actually had to find an apartment quickly. I remember that I was able to find one, and when my family came to be with us, we had no furniture. It was just an empty apartment. So we basically had the apartment and he had to stay in Winnipeg, Manitoba. So he was in Winnipeg Hospital for 13 days, and the hemodialysis journey started then.

Dr. Mojola Omole:

And how long did he stay in Winnipeg for the dialysis initially?

Vanessa Tait:

So a year after that, we started to discuss having an appointment about peritoneal dialysis, so that he could return home, so we started that process and that journey. The following month, there was a surgery to insert the peritoneal dialysis catheter in his stomach, and then my mom was trained to administer the dialysis.

Vanessa Tait:

So in May, 2018, is when my dad was able to return home with the peritoneal dialysis, however, he did have difficulties with peritoneal dialysis in my community.

Dr. Mojola Omole:

What was it like to ... just to step back a little bit ... what was it like for him initially to, one, be rushed from his home to Winnipeg, and then to be in Winnipeg for a few months? What impact did that have on him, being away from your community, away from the extended family?

Vanessa Tait:

I recall, and throughout the whole entire journey, my dad was very lonely, and getting used to coming from a Northern Manitoba community, where you're surrounded by nature and surrounded by land, and it's not as noisy, to have to come to an urban setting where it's quite noisy, quite chaotic. You can't just go out and be able to go fish or be able to go hunt or be able to go for a boat ride, and also not being surrounded by family. All his grandkids were up north. My brothers were up north, all his sisters, all family was up north, other than myself who was here in the city as his daughter. So my dad got really lonely and it was really hard.

Dr. Mojola Omole:

I can't imagine. So you said that he went back to your community and then he was on peritoneal dialysis. What other options are there besides peritoneal dialysis?

Vanessa Tait:

They discussed home hemodialysis. However, in my community, our house has tank water, we don't have a main line like we do here in Winnipeg. I know home hemo is probably something that is sufficient here in the city of Winnipeg, because there's a main line. You don't have to worry about running out of water.

Vanessa Tait:

Another thing is that the breaker system in our house is not quite large enough to hold the capacity of such a big machine.

Dr. Mojola Omole:

Oh wow, okay.

Vanessa Tait:

So even that, he said you probably will have to come and install something that's a lot larger. Another thing is, is that our community is prone to the hydro running out, I meant hydro outage, and it takes a while for Manitoba Hydro to come to our community to restart the hydro.

Vanessa Tait:

So if my dad was on home hemo, and all of a sudden the power went off and he was on the machine, what would that mean, right?

Dr. Mojola Omole:

Wow.

Vanessa Tait:

So it's very unrealistic to have such a machine, unless you do all those upgrades that I did mention.

Dr. Mojola Omole:

That's a lot of undertaking.

Vanessa Tait:

Yes, and also too, one other thing, one of the biggest things is because with the peritoneal dialysis cycler, again, innovation technology, they did have a USB you could plug in, and then you plug it into the system, and the doctors here in Winnipeg would get informed that either my dad's blood pressure was low or his sugar was high, or something like that. Apparently that technology does that. However, it didn't work in my community, the reason being is because we don't have connectivity. Our connectivity is not the greatest in our communities.

Dr. Mojola Omole:

And so, at what point did you decide to donate, and why did you decide to be a living donor?

Vanessa Tait:

So my dad went home May, 2018, for his peritoneal dialysis. He actually returned to Winnipeg October, 2018, because of complications of peritoneal dialysis. He was having really bad chest pain, so he did return back to Winnipeg, but upon his return to Winnipeg, he actually suffered a massive heart attack.

Dr. Mojola Omole:

Oh my goodness.

Vanessa Tait:

Unfortunately, during his bypass surgery, he also suffered a stroke, so there was a lot of things that were happening, and then, because my dad went home for peritoneal dialysis, I actually decided that I was going to let go of the apartment.

Vanessa Tait:

So when he returned, unfortunately he had to stay at the Marlborough Hotel, because with Northern patients, when they come to Winnipeg for medical treatment, they either have to stay at one of the receiving homes, and then also a lot of them stay in hotel rooms, so my dad at the time was staying at the Marlborough Hotel.

Vanessa Tait:

He did stay there until November, 2019. So he stayed there for over a year.

Dr. Mojola Omole:

A year?

Vanessa Tait:

Yeah.

Dr. Mojola Omole:

Oh wow.

Vanessa Tait:

So it's four walls, one bed, you eat at the restaurant, and so he was going through hemodialysis on Tuesdays, Thursdays and Saturdays.

Vanessa Tait:

So what that tells you is that, again, even the dietician orders was, "You have to eat this, and this is what you have to eat when you're on hemodialysis." However, the restaurant does not serve ... they serve what is on their menu, right? So you have to eat whatever is on the menu.

Vanessa Tait:

So I had sat and talked with my family and I really wanted my dad to go back home, because I’d seen the depression in him, I’d seen that he was missing home, and I just wanted him to go back home, because that's where he's happy.

Vanessa Tait:

There's just something healing about being home and eating our traditional foods, eating our moose, eating our fish, and just being there with my aunties, my cousins, my uncles, and just being surrounded by the love of your family.

Dr. Mojola Omole:

Of course.

Vanessa Tait:

That's more healing than anything. Some people just can't grasp that. That's where family is. That's where his grandkids were. My dad really loved his grandkids, and he wanted to go back home.

Vanessa Tait:

At first, he said, "No, my girl, I don't want you to give me your kidney." So it was me who persisted and talked with him, and so it took a little bit of convincing and he finally said, "Okay."

Dr. Mojola Omole:

So you are a donor, and he receives the transplant, and then how long was he in Winnipeg for after that, before he gets to go back home?

Vanessa Tait:

It was definitely a long journey. When the consult happened in January 2018, to when the actual surgery happened, it was about two years and six months.

Dr. Mojola Omole:

Yeah. He passed away shortly after that. Does that affect your decision at all, when you look back, about being a donor?

Vanessa Tait:

No. So my dad did pass, and took his final breath the morning of April 8th, 2021. So he did have the kidney for nine months. Again, my initial decision to donate my kidney to my father was so that he could go home. That was the goal. His wish to go home was fulfilled, and he was surrounded by family when he took his final breath, and he wasn't in a hospital setting, because the hospital setting is not the greatest place to take your final breath as well, too.

Dr. Mojola Omole:

That's wonderful. Thank you so much, Vanessa, for sharing your story.

Vanessa Tait:

Yes. You're welcome.

Dr. Mojola Omole:

Vanessa Tait lives in Winnipeg. Her home community's O-Pipon-Na-Piwin Cree Nation, 12 hours north of the provincial capital.

Dr. Blair Bigham:

So Jola, let's talk about the key takeaways here. I think my key takeaway is just that this idea that you have to move just to access medical technology that can keep you alive, is something that a lot of people aren't willing to do. People would rather die than leave their communities and travel a thousand kilometers away.

Dr. Blair Bigham:

And so even though we offer hemodialysis in big centers to people who live remotely, we're not really meeting our obligations of the Canada Health Act. It's not really a palatable solution for people.

Dr. Mojola Omole:

No, and we are giving them the option of leaving their support system, their safety, what means the most to them versus being on dialysis, so I can see how for some people, they would rather stay at home. They would rather be with their family, rather than undertake dialysis hours upon hours away from home.

Dr. Blair Bigham:

Yeah. It sounds like peritoneal dialysis isn't an option for everybody, home hemodialysis isn't an option for everybody.

Dr. Mojola Omole:

And I think that when we talk about, similar to our podcasts on social prescribing, is that there's a lot of structural aspects and determinants of health that really impact your health. Talking to Vanessa about not having broadband internet to connect the USB, not having a main line for water, not having the hydro, and that being an issue. Those are all things that are just structural, that we in the city and also us in medicine, we don't really think about in terms of how that actually impacts our patients' health, but is so crucial and is such an important part of the determinants of health, and so that was really eye-opening to me, of our blind spots for me.

Dr. Blair Bigham:

It makes me wonder what the future's going to hold for dialysis and for transplant. When I look at the machines that keep people alive, a ventilator is pretty small, transport ventilators on the helicopter I used to work on were very small. You could easily carry them. Even an ECMO machine itself is not that big. It's about the size of a shoebox.

Dr. Blair Bigham:

And then you have the dialysis machine, which is the size of a grizzly bear on his hinds, that you have to wheel into the room. It takes a dedicated nurse, it takes specialized water. It really is ripe for an amazing technological revolution to make it smaller and easier and more accessible. I wonder if that'll ever come?

Dr. Mojola Omole:

I think that they're doing wonderful things in terms of technology, but I do think though, even if we have those technologies, if we don't deal with the structural issues that we have in our society, those will not matter to the people that it matters to the most.

Dr. Mojola Omole:

So I can see where Aaron's commentary comes from in the sense of, well, this is an easy way that we can balance the sheets. We can balance it, that we prioritize people we are getting to dialysis is not feasible, and is harmful, to the point where our daughter gives her father a kidney, so he can come home.

Dr. Mojola Omole:

To me, that is very powerful, and that was just a really moving aspect-

Dr. Blair Bigham:

Absolutely.

Dr. Mojola Omole:

... because I'm often moved in this podcast. It was just really powerful that you would give your father a kidney, even if it's for two weeks, just so he could be home, and anyone who has to make that sacrifice, you have to sit back and think, "Are we actually," as you said, "doing what we're supposed to do according to the Canada Health Act?"

Dr. Blair Bigham:

Absolutely.

Dr. Blair Bigham:

That's it for this week's episode on the CMAJ Podcast. Please take a moment to share it, like it, comment on it, and make sure that you tell your friends about it. That's the best way for us to get the word out.

Dr. Blair Bigham:

Until next time, I'm Blair Bigham-

Dr. Mojola Omole:

And I'm Mojola Omole. Thanks for listening. Be well.