Interviewed by Saad Ahmed, Hannah He, Syed Alifer Zaidi
Dr. Aviva Goldberg is a pediatric nephrologist, and director of the Canadian Society of Transplantation and chair of Transplant Manitoba’s kidney allocation review committee. Dr. Aviva Goldberg generously discussed the impact of kidney transplantation on a child’s life and development, and the distinction of pediatric organ transplant from adult organ transplantation.
What inspired you to get involved with the ethics around organ transplantation, specifically pediatric organ transplantation?
I am a pediatric nephrologist. Clinically, I’m really involved with patients who have or are preparing for kidney transplants. But even before I became a nephrologist, I was always very interested in ethics. From my undergrad days and in medical school, I did courses in bioethics. So when I decided I wanted to go into pediatric nephrology for my clinical work, I saw that there were a lot of ethical questions coming up in pediatric nephrology – many related to transplantation but some others related to nephrology as well. And I thought that this is an area that is very under-recognized and under-attended to. At that time, I was a pediatrician interested in bioethics work. From neonatologists, to intensive care doctors, to general pediatricians – there weren’t really people in that sphere who were doing transplant ethics who were actually pediatric transplant doctors. It was really an area where there was a lot of need. I saw kids who had ethics issues related to their cases so I really wanted to be able to combine my clinical work and my interest in ethics, and that kind of view predated my interest in nephrology.
What does your work as a pediatric nephrologist entail?
Here in Winnipeg, we’re one of the full-service pediatric nephrology centres in Canada. So, we do everything from prenatal consultations (women who are pregnant with babies expected to have kidney disease), dialysis (all kinds from peritoneal, hemodialysis, and continuous renal replacement therapy – our nephrologists are involved with all three of those), kidney transplantation for kids of all ages (at most centres we have a minimum weight of about 10 kilograms but we do it ranging from small children all the way up to teenagers), both pre- and post-transplant care (we do the transplant surgeries here in Manitoba) and general nephrology (we see kids with anything from having one kidney or some mild high blood pressure all the way up to very severe genetic kidney diseases that are expected to progress to end-stage kidney disease). So, we really run the full gamut here in Manitoba, and that’s pretty similar to other pediatric nephrology centres in Canada. In some centres, they won’t do the hemodialysis or transplant, but our centre is a one-stop shop.
How does pediatric organ transplantation differ from adult organ transplantation?
That’s a really good question. So, my clinical expertise is in kidney transplant so I’ll talk mainly about that but I’ll touch on the other organs as well. The good thing is that pediatrics has benefitted from organ transplantation for a lot of major organs – so we’ve got kidney, heart, and liver being pretty standard. Lung, small-bowel transplant, and other areas where there can be transplantation. I won’t really touch on stem cell or bone marrow since that’s not really solid organ transplant and out of my expertise, but in general, pediatric patients benefit from organ transplantation. I think where it differs for kidneys for kids as opposed to kidneys for adults is that, first of all, there’s a lot fewer kids on the transplant waiting list – both in gross numbers but also proportionately. If you looked at 1000 adults, more of them would have end-stage kidney disease compared to if you looked at 1000 kids. But, of the kids that have kidney disease and need a transplant, they really, really need a transplant. If they don’t get their transplant in a speedy way, they lose out on a lot of really important things they can’t get later – physical growth, so linear growth, do they get tall enough, that sort of thing. But also developmental milestones and missing out on those pretty important things you have in childhood. So because of that, it’s really important that in terms of kidney transplant, kids get priority, so when they do need a transplant we get them in as soon as possible. That’s recognized by our adult colleagues as well.
In every organ allocation system and Canada and most throughout the world as well, kids will get priority. So, if they don’t have a living donor, parent, relative, or friend that will donate an organ, they get priority on the donor list. So that’s wonderful for pediatrics and makes pediatrics really special in that regard, but sometimes it makes people think that there can’t be any problems in pediatric transplantation. They think kids can get organs as quick as they can, there are no kids on the waitlist, etc. That’s just not true. There are kids that are still on waiting lists for kidney transplants, kids that will die while waiting for kidney transplants – much rarer than in adults, but it still happens. So there’s still a lot of ethical issues that come up as to how to allocate organs for transplantation and how to make sure that’s fair to kids, but also to adults who are waiting for an organ – making sure that we don’t overwhelm the list with pediatric patients. It’s not going to be that case, since there’s a lot less kids than adults, and a lot of good reasons to prioritize them. But that’s one of the big issues that comes up in pediatrics for organ transplantation. The other thing that’s really important in pediatric organ transplantation when compared to adults is that these kids are developing kidney disease much earlier. There are some young adults in their 20s, 30s that need a kidney transplant of course, but a large portion of the kidney transplant population in adults is older individuals. Whereas kids who are needing a kidney transplant get the kidney in their younger years – as young as 2 years old. With the technology today, they will probably need a second kidney transplant somewhere in their lifetime. So, that’s really important to think about, that they’re usually not getting just one organ, so how do we make it a really good quality organ that they get the first time that lasts as long as possible, but also prepare them for the fact that they’re probably going to need a second or third organ transplant sometime in their life. There are two other big differences between adults and pediatrics: one is that most kids who have end-stage kidney disease will move on to transplant. This is not the same in adults, as there are some adults who are too old or too sick from other things who cannot get a kidney transplant and never move from the dialysis unit to transplant. Whereas in pediatrics, transplant is generally the default. There are certainly some kids that aren’t going to be transplant candidates – they might be sick from other things, or there could be lots of other factors that might not make transplant the right thing for them, and that’s a really important group to talk about. But for the most part, most kids are going to go on to be transplant candidates. So that’s very hopeful, but it also creates some challenges. The last thing I was going to say that is a big difference is the emerging maturity and responsibility in pediatrics. If you transplant somebody when they’re 2 years old – obviously they aren’t caring for themselves at that age and their parents are caring for them and doing their meds, etc. They grow up having had a kidney transplant, and at some point they are going to become a teenager and move from a pediatric unit to an adult unit. It’s really important that we do that transition in an ethical way, in a way that’s responsive to their emerging responsibility, that we don’t treat them like babies when they’re not babies, but also that we don’t expect them to take on all the responsibility just like that. So, that transition stage is a really important area for us to do that well, so that when they do move from pediatrics to adults, they don’t lose that kidney. Unfortunately, statistics tells us that a lot of them do, and that the highest risk time for them is the move from the pediatric to adult unit.
Can you elaborate on some of the issues that are specific to pediatric organ transplantation?
I think there’s a general thought in the media and public that transplant or end-stage organ disease is even harder on a kid than it would be on an adult, and I think there’s probably some validity to that. If you are developing this disease as a child, you are missing out on some really important childhood milestones, like school, being healthy, and being able to eat whatever you want and play; that sort of thing. And certainly any type of end stage organ disease is going to put limits on that, and that’s even harder for pediatrics. I think the great thing is that, the public is very attuned to the fact that kids have special and maybe needs above and beyond that of adults, and have afforded pediatrics that priority. There is some philosophical debate about whether children should get priority on the transplant list, but it’s the minority. I think most people see value in giving kids access to the organs that they need, and that can be a great thing for the organ process in general, if we know how it’s affecting kids and kids can act as spokespeople or advocates for the organ process, and their parents too. Certainly, we have had many patients and parents who have taken up that advocacy, and that helps everybody, because it brings the idea of kidney disease or liver disease into the public eye. I think a lot of the ethical issues are similar: “how am I going to find an organ donor?”, “what are the appropriate ways to seek out an organ donor?”, that sort of thing. Some are very different. I think in pediatrics, again, we are talking about people who sometimes can make their own decisions, like older adolescents, and then, we’re talking about people who can’t; babies and small children, that sort of thing. When their parents are making this decision for them, what are the special issues that come up with that? What are the issues related to advocacy that come up when you are advocating for a small child that’s close to somebody that can talk through their own process? So, that’s kind of, when we wrote the book, we put together the book, we wanted to cover that: yes, there is actually quite a bit of literature about transplant ethics, and a lot of it is transferable to pediatrics, but there are some special areas that we really need to highlight in pediatrics, as opposed to adults and it relates to those things like: best interests, decision making, and how we make decisions for kids that are different to those that we make for adults, or allow adults to make for themselves.
Why is pediatric organ transplantation and the ethics involved an important topic?
The most important reason is that it’s what I do every day, when I see kids and parents who need kidney transplants, I recognize that, number-wise, this is a very small amount of kids, we’re not talking about asthma or food allergy, which affects a large portion of the population; organ disease affects a small number of kids, but we spend huge number of resources taking care of those kids. We have lots of money spent on things like: renal replacement therapy, dialysis and kidney transplant. And there are a lot of resources, nursing time, hospital space and money in addition to the organs that have to be given. It’s high technology and resources, something you can only do in specialized centres and you have to have a lot of expertise in. So the people that do it are really well trained to do it well. It’s a small niche but it’s an area that is so important for the families that are affected by it and the health care professionals that are providing that care. So, I think it’s very important to understand where it is similar to adults – we always have this thing in pediatrics that kids aren’t little adults – and when there are differences, to highlight that to our colleagues. I do also work in the larger transplant ethics realm, I don’t do just pediatrics transplant, but I do think that there are some really significant things that when you are doing the work and when you see what it’s like to have a child in your practice who is on dialysis, and who’s family wants them to get a kidney transplant, what that process is like for them. It’s very special and you feel very honoured to get to be a part of that, but it is different than what my adult colleges experience. So, just kind of saying: even though we are small in number, the issues that are affecting our patients are really important. And it’s also important, of course, for the general public to understand what it is we do, because, ultimately, they are the ones that are paying for the systems, the taxpayers’ systems that provide for healthcare, but also the ones donating the organs, whether it’s living donations or deceased donations, and they need to understand: “what are the differences between adults and pediatrics?”, “why is that important?”, “if I do sign up to be a donor, what’s going to happen and who’s going to be affected by that decision?”. It needs to be responsive to the public too. I sometimes feel like I’m swimming in the water of pediatric transplantation, so, of course it’s super important to me, but a lot of my colleagues may never have even had a patient in their practice who needed a transplant or, my adult colleagues may not intuitively know the difference between adults and peds, so it’s kind of that same work here and this is why what we are doing here is important.
Stay tuned for part 2!