The ethics of living organ donation

In a Science & Theology News exclusive, Arthur Caplan explains why he has "a lot of doubts and reservations about living donation"

By Arthur Caplan

July 25, 2005

Dead or alive: Is living organ donation ethical? (United States Postal Service)

Arthur Caplan has long been involved in the ethics of organ donation. The chairman of the Department of Medical Ethics and director of the Center for Bioethics at the University of Pennsylvania, Caplan testified on the National Organ Transplant Act and was involved with the Uniform Determination of Death Act.

Caplan says that there have been dramatic increases in people's willingness to give consent for organ donation when their loved ones die. He has devoted much time and energy over the years trying to figure out how to make transplantation work and how to enact legislation or policies that will give more people a chance to live. His most recent effort has been trying to convince the transplant community to expand eligibility for transplantation to people who are HIV positive.

On May 12, Caplan spoke at a Harvard Medical School Medical Ethics Forum called "Soliciting Organs on the Internet," which was sponsored by the school's Division of Medical Ethics. An abridged version of Caplan's speech is posted below in a Science & Theology News exclusive.

I have had and continue to have a lot of doubts and reservations about living donation. And so part of my problems with Web-brokering or solicitation of strangers to act as living donors are not a response to the use of the Internet to find donors. After all, the Web is simply a tool. It's just one way for people to find one another. But, I do have serious reservations, on ethical grounds, about the current practice of living donation in America.

The other thing I wanted to mention, though, is the death of Todd Krampitz of Houston, Texas. He got a directed donation last year from a cadaver source. You may remember him. He was the fellow who put up billboards around the Houston, Texas, area asking people to donate specifically to him if they died or if they had a loved one who died. Tom Krampitz was a young man, he was only 33 years old, when he found out his liver was failing due to cancer. He mounted a campaign with his funds and money that he raised, and put billboards up to beg for a donor. And he did get a transplant in late August of last year. He just died only nine months after his transplant.

The problem with his case was that, from the point of view of the transplant community, he was not a strong candidate to get an organ. They didn't think he would survive a transplant given the nature of his cancer, which was aggressive and very likely to take his life. It is unclear, in fact, that he lived any longer post his transplant than he would have if he had not gotten a directed cadaver donation and a transplant.

Directed organ donation

One of the problems raised by directed donation, whether cadaveric or living, is that there are people who will get a transplant who may not be medically eligible, medically appropriate or most immediately in need of one. It is experts in transplantation who can say who is eligible or most needs a transplant, when they might need one, if they can likely benefit, and what is the "best" use of this very scarce resource in strictly physiological terms.

I don't think donation is just a matter of individual liberty and choosing what you want to do with your parts, alive or dead. Part of what goes on with a directed donation is that we all wind up paying, to some extent, for the cost of that transplant. The public pays for the training of the people, reimbursing out of Medicare or Medicaid for much of the cost. Directed donation unbridled and unregulated, either living or cadaver, can, as the Krampitz case shows, undercut the efficacy that ought to be obtained from the yield of scarce organs. And I'm sorry to say it, but I think that Krampitz' case is an illustration of the waste of an organ. There wasn't much else to offer him, but I don't think that there was anything that could have benefited him. In some circles, it would have been viewed as futile to transplant him. So, he got his liver through a publicity campaign but arguably it went to him when it could have gone to someone else who had a much better chance to benefit from it.

The other problem that comes up with directed donation, whether it's on the Web or billboards or mounting publicity or ad campaigns, is the basic fairness question. Krampitz had the money to do what he did to pay the cost of the some of the websites and so forth. But even without that, without fees for websites, if you just want to go out and put ads in the paper or make a television program and put it on late at night on cable TV, it's obviously the case that access to organs is going to be driven in part by who has the ability to generate the resources to do these things.

And another factor: who is appealing? Who pulls on the heartstrings becomes a factor in allocation when direct donation is encouraged. When, many years ago, Jamie Fiske got a liver, she was a little girl. A dad begging for his little girl's life is very compelling. If you put a series of 60 year old alcoholics who are homeless on billboards and say "here are the people we must help with liver donation," it is doubtful, no matter how many billboards you put up with pictures, whether people are going to be motivated, either cadaver or living, to help these people in need. We have all kinds of biases and stigmas about those who need transplants. I mentioned the HIV earlier. Some people will do better than others if directed donations are promoted because they will simply be seen as more appealing than others. So, equity and fairness are some of the things that come up in the best use of a scarce resource as a matter of fairness or justice or principles that have to be taken into account in thinking about any form of directed donation through the internet.

Ethical reservations about living donations

What I want to do is comment on that claim I made about why I have ethical reservations about living donations. You might think of a spectrum where at one end is the voluntary, altruistic, freely, well-informed person who decides to choose to donate an organ to a family member. And I doubt we're going to hear anybody on the panel today, except maybe me!, say that they're very worried about a brother who gives a kidney to his brother, who understands what's going on, who knows the risks that are involved, who's not being paid any money under the table, who has a reasonably good idea that the brother will benefit and goes into donation with his eyes wide open.

But at that end of the spectrum, the reason I raise a moral question is, it's obviously difficult emotionally to disassociate yourself from the fact that it's your brother.

An old social science friend of mine years ago named Roberta Simmons once told me, "I don't know why you bioethicists spend so much time on the informed consent issues about doing anything in organ and tissue donation"

I said, "What do you mean?"

She said, :Because when we ask people how they make decisions about whether they're going to give bone marrow or a kidney to someone, they make up their minds in a second. "That's my brother. Of course I'll give you my kidney or donate bone marrow. "That's my brother. I would never give that jerk my kidney or bone marrow."

So, you can see the emotional pull of duties, obligations that we associate with family roles very strongly the closer their emotional ties. It might even extend to my buddies at the firehouse. It might extend to my fellow member at the church. The closer you are emotionally related, the harder it is to say that what you're doing is deliberating and reasoning and weighing risks to make a choice.

Some of what you do is simply because you think in the role you're in as a parent, brother, friend, or close associate: what choice do you have? But that of course raises the question, if we say that free informed voluntary consent is crucial, it gets to be somewhat sticky when we feel the pull of these emotions and duties. It may be acceptable to act out of a love for one's family member to give up a kidney, but sometimes it isn't voluntary choice in the purest sense of that term. That's what the moral problem is when those who are emotionally close are involved in living donation.

At the other end, when we have people come to help strangers, as we do at the University of Pennsylvania, and in many other programs, we wonder do they really know what they are doing?

I've met a few of these people that come to us out of the blue who fly in from another country and say, "I read in the paper that someone needs an organ and I want to give them an organ." Or someone comes and says, "Jesus spoke to me last night and I'm here to give up a piece of my liver today." And we say, "Well, Jesus is not on our payroll to recruit as part of the organ solicitation system, but it is possible that you were motivated by altruistic regard for your fellow man because we don't know how to evaluate explicit religious motives.

But everyone in the room is starting to think, "What nut flies halfway around the world out of the blue to give somebody they do not know an organ?" Competence is what becomes suspect when strangers are at issue in living donation.

The moral paradox of living donations

So we have what I might immodestly term Caplan's "Moral Paradox of Living Donation." We say we want altruistic, competent free choice as a requirement for living donors. But, at one end of the spectrum of donors there is voluntary free choice but emotion may compromise choice.

When they are strangers consent seems solid, but you start to worry about the competency of people who appear out of nowhere and say they want to help those they do not know. And we don't have a great measure or tool that I know for discerning good Samaritans and true altruists from people who have psychological problems or those who are acting on rash impulse.

Part of the problem again is, if you accept this paradox that the stronger the emotional tie, the harder it is to be sure you know what you're doing, the less, the more you worry about competence or motive. Are they there because of impulse or are they there because of money? Are they there because of psychiatric issues? What's going on?

The problem in the living donation field is in addition to not having much regulation in terms of allocation, it hardly has any regulation in terms of how to screen and assess donors. So, when people call up and say, "I met this woman on the Internet" or "I saw them on TV" or whatever is driving the stranger, you wonder what sort of assessment is used to screen these people to make sure they know what they're doing and to screen out people who may have motives that are suspect.

But, there are no agreed upon measures to do that. Different programs do different things. Some don't do much at all. Some people will say, "Look, as long as you seem competent to the transplant team, we'll take you." And I know one or two programs that do no independent psychiatric, psychological or social work assessment whatsoever. So that raises questions about the business end of transplants.

Transplant programs are eager not only just to save lives but also to get people into their programs because there's a lot of money to be made from transplants. So they are not always paying attention to the interests and needs of the would-be donor. There is a fundamental weakness in the living donor side of the transplant -- there isn't much donor advocacy and there are no agreed upon standards for how to deal with assessment or make decisions about who is eligible to be a living donor. Without those standards, then there is danger all over the place in terms of solicitation of strangers.

So to sum up: I see problems with respect to the recruitment of living donors partly because the organs may wind up going to people who don't need them the most or who don't benefit the most. I think that's true for cadaver directed donation as well. There are problems about fairness.

If you're going to allow solicitation, you're going to skew who gets transplanted toward who it is that's going to make the most noise. And because the programs don't do a great job screening the donors in terms of consent or competency, it is hard to say that enough it being done to protect donors' interests because there are no recognized standards for doing it.

Arthur Caplan is chairman of the Department of Medical Ethics and director of the Center for Bioethics at the University of Pennsylvania. He is co-editor of The Ethics of Organ Transplants: The Current Debate, (Prometheus, 1999).

Copyright © 2005 Science & Theology News.

This article posted August 12, 2005.