Paying it forward

GUEST: Dr. Sandip Kapur
AIR DATE: 1/18/2014
VTR: 09/13/13

I’m Richard Heffner, your host on The Open Mind. And the other evening I had the most extraordinary learning experience.

For I had gone online then at NYTimes.com to study its Interactive recounting of a record chain of 30 kidney transplants that brilliantly illumined for me a Times print story I had read with great interest over a year and a half ago, in February, 2012.

Reported by Kevin Sack, and titled “60 Lives, 30 Kidneys, All Linked”, it and its interactive counterpart really taught me what “paying it forward” means.

For Sack tells the story of two men, half a continent apart, and connected only by being the first and the last in a long chain – Chain124 it was labeled by the National Kidney Registry – a chain “linking”, as he writes, “30 people who were willing to give up an organ with 30 who might have died without one…donors who gave a kidney to a stranger after learning they could not donate to a loved one because of incompatible blood types or antibodies… Their loved ones, in turn, were offered compatible kidneys as part of the exchange.”

“Paying it forward”, indeed!

And I became so intrigued with this vital matter of kidney transplants that I decided to pursue it further here on The Open Mind by inviting a very young old friend, one of the world’s leading experts in the field, Dr. Sandip Kapur, Chief of Transplant Surgery and Director of the Kidney and Pancreas Transplant Programs at New York-Presbyterian/Weill Cornell Medical Center.

In 2008, Dr. Kapur led the team that performed one of the nation’s first living-donor kidney transplant surgery chains that have revolutionized the organ transplant process in improving the opportunity for patients in need of new kidneys to find compatible donors.

But, let me ask my guest just how important – and how practical – he considers these domino chains…with all of their costs and all the difficulties involved in flying organs back and forth across the country. What do you think, Dr. Kapur, is it worth the game?

KAPUR: Absolutely. In my mind this process has actually revolutionized organ transplantation in this country and provided much needed opportunities that have not existed before and are critically needed right now.

HEFFNER: Is that because living transplants are so much better?

KAPUR: Well, I think … partly … yes … living transplants are the best form of kidney transplant that we have today. They have the opportunity for the most immediate function and then most importantly they have the opportunity for the organs to last the longest.

But in this situation when we talk about chain transplants and the opportunities for people to get transplanted … organ donor chains allow for more opportunities for transplantation that don’t currently exist.

We have a significant organ shortage in this country. There’s over 90,000 people waiting for a kidney transplant alone … that number rises exponentially every year. It’s probably approaching close to 100,000 at this point.

Just in the New York region alone, 7% of the nation’s population is waiting for a kidney transplant.

HEFFNER: Seriously?

KAPUR: Seriously. And what makes it worse is that within the New York region we rank second to last in the availability of organs for the amount of population base that exists in this locality.

HEFFNER: Why is that the case?

KAPUR: You know, I wish I could answer that … if I had an answer for that we could find the solution to it. But as long as I’ve practiced here for the last 18 years, that’s always been the case.

And it’s probably multi-factorial … it could be due to educational issues, it could be due to the, to the multi-cultural population that we have here. Could be an element of distrust of the process. It could be in … not getting enough buy-in from even the medical practitioners at all the various and numerous hospitals in the community, that really have to be relied on to not … I don’t want to use the word “promote”, but to make organ donation known to people that they have interactions with.

And it just could be simply also due to our ineffectual ability to do it right … just by our very own organizations that exist here.

HEFFNER: You don’t mean do the transplants right … you mean …

KAPUR: I mean the …

HEFFNER: … the educational work that needs to be done.

KAPUR: Absolutely. Absolutely.

HEFFNER: You say that even the medical … in the medical profession there is not the total cooperation that you look for.

KAPUR: Yeah, well … yes and, and in some ways it’s understandable because most doctors deal with people that they’re trying to keep alive. The last thought in their mind is what to do with … after they die.

It’s not a primary focus, so I don’t view it as a fault, I just view it as almost an inconsistency to follow through in the whole process.

HEFFNER: What do you have to do to be a donor?

KAPUR: Ahem, in the United States you have to provide a way to make that known to your loved ones or to whoever has power over your affairs as you pass away. And therein lies part of the problem. I don’t think many people think to that extent as well.

In this country it’s not presumed that you will automatically donate your organs. There has to be permission to be able to do so.

HEFFNER: Is there any place where it is assumed …

KAPUR: Yes.

HEFFNER: … otherwise. Where?

KAPUR: There are places in Europe … particularly Spain, they have a process there of “presumed consent” … so in that country, they basically assume that everyone wants to donate and when they don’t they have to actively opt out. Whereas here it’s exactly the reverse. Here it’s presumed that no one wants to do it and the way to do it is to opt in … in an active way.

HEFFNER: Now the driver’s license is one of the ways of doing this … isn’t it?

KAPUR: The driver’s license is one of the main ways of doing this. And I’ll admit I don’t personally, actually, know, if that’s a definitive way of doing it.

Because ultimately if … when someone passes away, if they have family members that object to this, then I think the family members can stop in … you know … can step in and say “We don’t want this done”.

HEFFNER: Even though you have indicated …

KAPUR: Even though you have indicated on the license.

HEFFNER: So you’ve really got to take a more positive approach to it. You have to make ….

KAPUR: Yeah.

HEFFNER: … quite clear in your Will, in your Living Will …

KAPUR: Yeah.

HEFFNER: … your directions.

KAPUR: Yeah. And I think even more importantly than that … people have to have a real, honest discussion with the people that are closest to them. So they actually know what their wishes are. Signing a license, signing off on a, on a license, which you keep to yourself and your family members may not even know that you’ve done that … you know, can be an ambiguous situation when the time comes.

HEFFNER: Sandy, what are the factors that work against sitting down with your family and saying “I want to make this ultimate contribution. When I’m dead, I’m gone, but I want my organs to serve, if they can and while they can … some life giving purpose.

KAPUR: Yeah. Well, I think the biggest factor is … you know, I don’t think its human nature to sit down and think about your death most of the time. You know, people just don’t simply think about it. And I think that’s where our educational efforts fall short. I think that’s where we have been not good at highlighting what great value this would be and what a critical need exists and what a tremendous difference people could actually make.

HEFFNER: Well, of course, it is quite contradictory for a physician to be talking not about continuing and preserving the life of his patients … he’s talking about what happens when …

KAPUR: Yeah.

HEFFNER: … it isn’t logically contradictory, but it must feel that way.

KAPUR: Yeah. You know interestingly for me, it doesn’t. Because I don’t actually focus on that part. My focus is that when I do a transplant I’m giving life back. It’s the primary component of why I chose to do what I do. It’s … even different than other areas of surgery where people deal with cancer or other situations where, even when they’re operated on, the long term results may not be so positive.

But for me, with kidney transplant I almost always feel, when I leave the operating room, that I’ve done a good thing and it’s going to be something that’s going to last.

HEFFNER: We all have two kidneys, we need one ….

KAPUR: Yes.

HEFFNER: … to function … healthy … perfectly healthfully, as I understand it.

KAPUR: Yes.

HEFFNER: What’s your fix on the question of “For sale” … selling, commercializing … on kidneys. Is this a “out of bounds” question to put to you?

KAPUR: No, it’s not an out-of-bounds question and I think that ah, ah … you know, at face value I am not a proponent of “for sale” … I am not a proponent of anything that takes advantage of another person.

I think the process that we have in this country … even in the selection of living donors, as we currently do it … and I tell every patient that comes into my office that is contemplating living donation … that as much as we want to help the person who needs the transplant, the living donor process is designed to protect the donor.

Which is as it should be … not only their health, but mentally and to ensure that this is something they understand, it fits within their life and I think, really, the most important component that they really want to do it. And they don’t want to do it because they have some financial need or some other issue that is clouding their judgment and their ability to do it. Not that we would actually clear anyone that wasn’t medically fit to go forward.

HEFFNER: But you’ve said …

KAPUR: The other side of that coin, though, is … you know … should there be some element of payment for people that donate organs? And, obviously that’s a much broader question … something that society as a whole has to weigh in on and provide some guidance as to … do you value saving other people’s lives? Is there some justification for providing for funeral expenses? For the government stepping in and recognizing that every transplant that’s performed in actuality saves thousands of dollars because it takes people off of dialysis, which is a chronic condition that drains this country’s healthcare costs in a very considerable way.

So, there are ways to look at this. But every time the issue of payment comes into play … it’s a very touchy subject as it should be.

HEFFNER: What other countries have considered this and do accept the notion of payment? Are there other countries?

KAPUR: You know, honestly I don’t for sure … you know we do hear that there are other countries that have behaviors that I don’t think we would consider doing the right thing.

HEFFNER: Right. Going back to this very interesting point that you make about living donors … you want to make certain that they’re not only physically capable of doing this without harm to themselves, but psychologically, too.

KAPUR: Yeah. Psychologically, socially … this has to be something that they have thought deeply about, that they’ve come to accept and that it fits within their life and if they do this, they have an understanding of what’s involved and what they’ll be missing. After all, they’re donating a piece of themselves. And people are who they are, they have very wide opinions and methods of dealing with things psychologically and, you know, we make great efforts to address all these issues beforehand.

HEFFNER: Sandy, what was the figure that you used before … 90,000 ….

KAPUR: 90,000 … I think now, actually approaching closer to 100,000 people requiring kidney transplants.

HEFFNER: And if they don’t get them?

KAPUR: If they don’t get them, they’re relegated to a life on dialysis and for a great majority of them … an abbreviated life.

HEFFNER: What do you mean, abbreviated life?

KAPUR: Well, it’s well known that, that renal failure patients on dialysis have a shortened life span compared to if they were transplanted. Particularly diabetics.

HEFFNER: And if they are transplanted … home free? Or better off, but not home free?

KAPUR: It’s a relative … it’s, it’s a relative condition. For the great majority of people go on to have a completely normal life after transplantation. Particularly now in 2013, going into 2014, the types of medications we have, our understanding of it, the dosages we supply, the side effects that are experienced are far, far less than they were just even ten years ago.

I think one of the things that people don’t recognize is that, as a whole, transplant is relatively a pretty young field compared to the rest of medicine. The first successful human transplant was really December 1954.

HEFFNER: ’54?

KAPUR: 1954. So we’re only a half a century into this, whereas other areas of medicine have been around far longer. But the knowledge has come very quick and our ability to provide really excellent quality of life is here, right now.

HEFFNER: Well, now how do you choose recipients?

KAPUR: We choose recipients with a very careful process. Ahemm, one of the great benefits of people that come into a transplant program … I personally think … is that they get the best medical evaluation of their life. ‘Cause before I’m willing to operate on someone I feel I need to know everything about them. There’s no surprises for me. Even to the point where I have a visual impression in my mind of what their anatomy is going to be like and where I’m going to go and what I’m going to do.

So, we choose them with a very healthy process of evaluating them medically, surgically, most renal failure patients do come with a significant amount of co-morbic conditions with underlying advanced diabetes, underlying heart disease, vascular problems. All of those are looked at and referred to other specialists to review, sign off on and provide a clear history of what we’ll be dealing with.

HEFFNER: But now, a kidney becomes available. A healthy kidney, can be used for transplant … 90,000 people waiting for …

KAPUR: Yeah.

HEFFNER: … transplantation. How do you make your choice?

KAPUR: Well, often times the choice is made for us … there is a system of organ allocation in place in the United States, it’s a local, regional, national system. Meaning that an organ become available in New York City.

That organ is first made available to the population of New York City and to the various transplant centers. The information about the donor is transmitted. Each of us decide whether we want to use that organ.

When we decide we want to use that organ then there’s blood work and other factors taken into account. There’s a … there’s a matching process to make sure we can identify the patients that are compatible with that organ.

Once that’s done then the organ is allocated via a defined waiting list that is kept by a … computer generated list … that’s kept not only locally, regionally, but nationally … it’s administered by UNOS and then locally by the New York Organ Donor network here.

And based on where people stand on that list, that’s how organs are allocated preferentially.

So the people with the longest amount of waiting time are the ones that this organ would be offered to. And … providing they match.

If we find that, for whatever reason, we don’t want use that organ for the patients that are coming up and that organ doesn’t get matched to anybody else in New York, then it will be offered to the rest of New York State. And after that it will be offered nationally.

HEFFNER: From New York State to nationally …

KAPUR: Yeah.

HEFFNER: … not to New Jersey and Pennsylvania and other close …

KAPUR: Right. Right.

HEFFNER: Who operates this system?

KAPUR: Well, the whole system on a global scale is administered by UNOS, the United Network for Organ Sharing, which has been in existence for a very long time.

HEFFNER: Are there controversies raging about it … about the choice method?

KAPUR: Oh, yes. Absolutely. And I think … it, it’s not an antagonistic type of controversy, but it’s more so that … as our knowledge expands, as we transplant more people, as we’re quite honestly forced to look at organs that we may not have considered in the past, because we would have thought that they were too old, they wouldn’t last as long, even organs that have anatomical injury, that may create problems later … all of this has been fueled by the extensive nature of the organ shortage that exists here.

We are constantly searching for ways to make greater use of the organs that do become available. And now we’re at a point where I will actively tell a large number of my patients ‘cause I’m finding now that as the population in America ages and we have more older people living longer … there are a greater number of older people coming to transplant. And they want transplants because they want to have the life they had before. They don’t want to be tied to a dialysis machine … they want the freedom. So there’s a healthy number of patients over the age of 65 that we now transplant.

HEFFNER: Do you … you say “they want” … do you want them or do you feel that younger people should be considered first and foremost because they have longer lives to life.

KAPUR: You know, this has been a question that’s been asked to me before. And I’m going to tell you honestly that I’ve arrived at a point where I don’t feel I can make a judgment of who should get the organ and who shouldn’t.

And I say that because I’ve seen, over and over again … there are young people that get transplanted that don’t behave properly after a transplant, they don’t take their medications, and they end up losing that organ.

I’ve seen older people get transplants … they go on to have very meaningful lives … they make an impact on the people below them … which can be quite profound.

So I’ve often thought and I’ve said to myself, “How can I judge who is the right person. Who’s going to take care of this? Who’s going to make the most beneficial use of that?”

HEFFNER: But a judgment has to be made …

KAPUR: So the judgment becomes made that patients come in, they’re evaluated … if they’re healthy enough to go through a transplant, they’re motivated enough to do it … part of the process in looking at a recipient is to assess these non-medical issues of … are they going to be responsible, are they going to be compliant with taking their medications. All of these things are taken into account, the best that we can.

So, you know, there is a process that … is it absolutely perfect? No. But, it’s what we have and we work with it. The controversies that are going on right now are precisely what you’re discussing … should certain types of organs be allocated to younger people?

Because they’ll be able to, potentially, have a longer span of time with that organ and make maximum use of that resource.

And, I don’t disagree with that either. And it turns out that in practice, most of the patients that I see that are older that are 65 … they’re … I do ask them to strongly consider and have them consent for what’s called an “extended donor”, a donor above the age of 60, or a donor above the age of 50 with two or three other factors that may reduce the live of that organ.

And almost invariably, when they tell … when they ask me, “What’s the downside of this?” … I say potentially nothing, or at the most you may not get the maximum lifespan out of that organ. You may get five years out of it. You may get six years out of it.

And for a person who’s 65/70 or older on dialysis … I’ve never found them to say, “No, I won’t take that amount of time.”

HEFFNER: Fascinating. Fascinating. Do you find that … I guess clearly the answer is “Yes”, if you think back to the beginning of your career, that you would have chosen this highly, highly sensitive area for your life’s work?

KAPUR: No. (Laugh)

HEFFNER: (Laugh) You fooled me, huh. Tell me why.

KAPUR: You know, I think, it goes back to what I said earlier. I found that … even when I was in medical school … when I entered medical school, I didn’t know surgery was going to be my life. And as I think most things happen, you experience things and something touches you or you meet someone that has an influence over you. And I think all of those things happened to me when I first became exposed to surgery.

And then when I started to train in surgery … again, for me the most gratifying part of surgery is that I can immediately help someone. And that I know that my work is going to be lasting in a very positive way. And transplant had all those elements to it. And, in addition, it also encompassed some of the biologic and scientific areas that I had spent some time in before even entering medical school, with some advanced immunology work … so, for me it was really the perfect melding of all those things.

HEFFNER: Well, clearly from your reputation, from your achievements, it worked out very well. Dr. Sandip Kapur thank you so much for joining me today.

KAPUR: Thank you, my pleasure.

HEFFNER: And thanks to you in the audience. I hope you join us again next time.

Meanwhile, as an old friend used to say, “Good night and good luck”.

And do visit the Open Mind Website at thirteen.org/openmind to reprise this program online right now or to draw upon our Archive of 1,500 or so other Open Mind and related programs. That’s thirteen.org/openmind.