Fall 2003, Vol. 10, Issue 3
This is an edited and updated transcript of a forum presented by the Harvard Medical School Division of Medical Ethics in March 2002. It was moderated by Walter Robinson, MD, Assistant Professor of Medical Ethics, and Associate Director of the Division of Medical Ethics, Harvard Medical School.
In July 2003, a bill was introduced in the US House of Representatives that called for studies to determine whether financial incentives could increase the willingness of Americans to donate their organs after death. The American Medical Association (AMA) officially endorsed similar studies in June 2002, following a heated and public debate. In the midst of that debate, the Harvard Medical School Division of Medical Ethics hosted a panel discussion to explore the AMA's proposal. The idea that Americans do not sell organs has guided the policy and ethics of organ transplantation. This policy was codified into federal law in 1984 and is the policy of the United Network for Organ Sharing (UNOS). But as the need for donor organs has steadily increased, the pool of available organs has not kept pace and some believe it is time to change the procurement mechanisms to bring supply more in line with demand. 1, 2
Frank Riddick, MD,
past Chair of the American Medical Association's Council on Ethical and Judicial Affairs
The AMA was motivated to act now because of a bill passed in Pennsylvania that provides a modest payment of $300 for funeral expenses to the families of cadaveric organ donors. A bill was also introduced in the US Senate that proposed a substantial tax credit of $10,000 to the estate of individuals who become organ donors. The AMA's current policy is that it is unethical to make any payment to living donors. But with respect to cadaveric donation, if there are to be financial incentives they should be in the form of a future contract made by an individual when healthy; that the payment be made to the estate after the organs have been donated and transplanted; that the payment be as small as possible to stimulate donation; and that any form of financial incentive not alter the current system of allocation of organs. When we reviewed that and looked at various proposals it became apparent that there was a good deal that we did not know. 3
Currently there are about 80,000 people on organ waiting lists. There are about 14,000 individuals who become potential cadaveric donors each year. Only 6,000 of these actually become donors, and 16 people on waiting lists die each day awaiting an organ. There have been attempts to increase the rate of donation: educating the public, drives to enroll potential donors, creation of registries. Despite these efforts, the organ donation rate has been the same for the past three years. We decided that it was time to look at some other techniques to stimulate donation. At about the time we first made our proposal, the American Association of Transplant Surgeons issued a statement that it was time to look at the concept of financial incentives. 4 They said that any payment should be more in the form of a "thank you" than a bribe. Shortly after we went through our initial presentation, the advisory committee to the Secretary of Health and Human Services came out with a similar statement.
Our suggestion is that we undertake pilot studies to find out what motivates people toward organ donation. If financial considerations are to be made, it would clearly require a waiver from the existing federal law. Any studies done should be scientific in nature, should be properly designed, should have input from the population where the studies are carried out, and should go through an institutional review board. Any payments should be limited to the smallest amount that might influence people, and the results should be analyzed by dispassionate, uninvolved individuals. The AMA itself is not proposing to do any studies; rather, it proposes studies be carried out in transplantation centers in conjunction with the organ procurement agencies. This in no way should alter the current allocation system of organs. Only with data will we really know what will work and what won't. Until then we're simply looking at assertions.
We don't know why people agree to donate organs. We know that there are barriers. But there are ways to address those barriers and we would like to find them.
Clive Callender, MD,
Chief of Surgery and Director of the Transplant Center at Howard University Hospital, and Chair of the United Network for Organ Sharing Minority Affairs Committee
The fallacy with the AMA proposal is that it does not address the inequity associated with the access and allocation schemata, neither of which are equitable to African-American and minority populations. That is a very significant flaw. As an African-American transplant surgeon, I've been engaged in community transplant awareness education programs since 1973. My most important insight has been the enormous degree of my ignorance of African- Americans and the depths and intensity of their feelings and prejudices based upon their past personal experiences. 5
In 1990, I was asked for my opinion on financial incentives and their impact on the African-American community. At that time, I said that I thought it would not be harmful. But then I went back to the community and I brought this topic up for discussion at over 800 community presentations. I've kept my ears open to the responses and have looked at the results of surveys of African-Americans and other minorities ever since. What has become crystal clear is the following: first, there is no single repository for what the community may feel on any issue. Second, there are cultural and subcultural perspectives on each issue that are deeply affected by socioeconomic and educational levels. Third, the intellectual sophistication and level of education often do not correlate with one's position on any ethical or moral issue. Fourth, Caribbean and non-Caribbean African-Americans and subgroups respond in their own unique ways, often agreeing or disagreeing without predictability. And finally, the only way to find out what the minority African-American, Hispanic, Latino-American, Native American, Asian-Pacific Islander or Alaskan Native opinion is, is to actually ask for it. And this can be best found out by focus groups led by culturally and ethnically similar and sensitive individuals who are capable of interacting in an appropriate way.
As far as financial incentives are concerned, the feedback received from members of African-American communities across the country included both pros and cons, but mostly cons. The negative opinions have come from those who have high and low incomes and from those who are highly educated and those who are not so highly educated. Focus groups need to be arranged and we must follow whatever their consensus turns out to be. If it is affirmative, then let us organize and launch pilot programs across the country and move ahead based upon communities' input. Moving ahead without community and focus group consensus is dangerous, it is likely to backfire, and I would be strongly opposed to it. Moving forward, however, with the appropriate community input can be very beneficial.
Margaret Lock, PhD,
Professor of Anthropology at McGill University and Twice Dead: Organ Transplants and the Reinvention of Death
There is no doubt that there is a long and growing waiting list for organs,especially for kidneys. There are several obvious reasons for this that are rarely discussed. There are many fewer car accidents and trauma units are much more effective than they used to be. This means that fewer people, who 20 years ago might have become brain dead, end up in that condition. Also, we have an aging population. That means not only are there more people who potentially want organs because they are older and their organs have given out, but it means that there are fewer potential donors per potential recipient because the proportion of young people in the population is smaller. And more and more people are deemed to be eligible recipients, including tiny infants, people over the age of 70, even over the age of 80, people with comorbidities, other kinds of diseases that formerly never would have been transplanted, and people on their second or third transplants.
The questions around allocation are terribly important and terribly difficult to resolve. It's a subject that needs extensive public and media coverage to reduce the idea that we all have an entitlement to somebody else's organ.
To see the problem as merely due to a shortfall of donated organs is absolutely not appropriate. The reservations that very many people have in connection with organ donation and procurement have been massively underestimated. It'snot simply a lack of altruism. It's also not simply political concerns about disparities between one group and another. Surveys in Sweden, Japan and Oregon have all shown that people's attitudes towards newly dead bodies include fear, worry and concern. More than 50 percent of people surveyed feel uncomfortable about what they perceive to be tampering with dead bodies, and particularly with newly dead bodies. Many feel that brain dead individuals can suffer. These feelings are not rational, not scientific. But when you're faced with a sudden and traumatic death, when your child is scraped off the street and rushed to the ICU and later declared brain dead, then the idea that you don't want this child to go through any more suffering makes perfect sense. Many people feel this way and it stops them from donating .6 Also, we tend to think in terms of autonomy, of individuals giving informed consent. The individual signs the donor card, but, of course, it's the family that ultimately has to make the decision. Heartbreaking decisions have to be made, often very rapidly, in intensive care units.
Another issue is that the concept of brain death is very poorly understood,even among a good number of healthcare professionals. And therefore they are not in a very good situation to explain clearly to families in acute grief exactly what brain death represents. The whole ICU story - what goes on in the ICU between professionals and grieving families,the determination of brain death,and the discussions to secure permission to procure organs - all of this is relegated to the unspoken side of the transplant endeavor. This is something that needs a lot more open debate and discussion.
Finally, we have to consider that financial incentives could aggravate the shortage. We really don't have evidence one way or the other, but potential altruistic donors might well refuse to donate because they don't like the idea of money changing hands in organ"donation."
Nancy Scheper-Hughes, PhD,
Professor of Anthropology at the University of California, Berkeley, and Director of
Organs Watch, a medical human rights and research project
The language of organ procurement and transplantation is often a blend of what I call "doublethink" or "doublespeak." Full of contradictions and noble lies, it is very ideological and often reductionist. "We're saving a life" is a phrase that is often used to end all moral inquiry and all questioning. It ends all debate. It is a fetishization of life at all costs. There's confusion, too, of basic concepts such as when a bribe is called an incentive. Do we not know the difference between a thank-you gift and a payoff?
What if your dinner guest brought you a check for $20 rather than a good bottle of Italian Chianti or California chardonnay? What are the solutions to organ scarcity? First of all, organ scarcity doesn't come from nowhere. It's socially and medically created as more and more classes of people are added to a waiting list with an understanding of transplant as a medical right, a banner of medical citizenship, and as an unlimited good. I would contrast this to the UK where notions of rationing of scarce medical resources are still prevalent. But to many Americans, rationing of any kind conjures up the bread lines of the 1930s and the ration books following World War II.
Why is there still so much resistance to cadaveric organ donation? Again, there are many contradictions. In a way, dead bodies seem to be more precious and sacred than living ones. We know what turns Americans away from giving permission for the retrieval of organs at the point of brain death. These reasons include deep psychological, social, cultural, religious and political motivations; grief and mourning responses; and beliefs that are still very strong in our society of bodily integrity, fears of mutilation, and ideas about the proper disposal of the dead. Added to this are reservations about the ontological status of brain death from among international neurological scientists. Meanwhile, there is a lack of trust in medicine and in the state that is very strong among many of our minority populations. Knowing all this, how in the world will a cash payment at the bedside of an ICU unit overcome such strong social sentiments? A tax break to chip away at religious beliefs? Three hundred dollars towards funeral expenses for an African-American parent who already suspects that his or her son was not, in his short life, properly taken care of by medicine, by medical insurance, and possibly not even taken care of very well in the emergency room?
There are various solutions internationally to increase the supply of organs. There's the Israeli model: very low donation rates so you export your transplant patients elsewhere and you give them medical insurance to pay for it, even at the cost of their buying kidneys from poor peasants in Eastern Europe. There are the Philippine, Iranian and Iraqi models: government-sponsored payments that allow very poor people to sell their organs for as low as $500, which leads to deep social resentments. The Chinese model: you can use the organs of executed prisoners. The Russian model: in which there's not such a careful monitoring of confirmatory tests for brain death. The Spanish model: paying the procurers. More humanely, there is the Austrian and Belgian model of presumed consent. People are assumed to have given consent for organ retrieval unless they have specifically opted out. We can't have presumed consent in this country in large part because we don't have the kind of social consensus whereby people feel that their organs will be fairly and equally distributed among the poor as well as the wealthy or well insured, among women as well as men, or that all will have an equal right to get an organ should they need one.
So first we have to address the lack of national health care, the 44 million uninsured, and the contradiction in asking poor people in America - who tend by and large to be over - represented in emergency rooms and ICUs - to donate organs when they and their relatives may not even have basic health care. It's a violation. I have heard organ procurement organizations talk about the lack of generosity in minority communities. We're talking about political resistance, not about a lack of generosity.
Discussion
Walter Robinson: What do you think would be the harm or benefit of studying the impact of financial incentives on organ donation rates? And how much of a change in the donation rate would you hope to see to call the program a success?
Frank Riddick: Unless you get a broad consensus and input from the population involved, you might alienate the population, and the presence of incentives might actually decrease donations. But the fact that over half of the eligible donors do not, in fact, become donors is a problem that needs to be addressed. I would say, that unless as a result of this, there was a 15 percent increase in the donation rate, it probably would not meet our expectations.
Margaret Lock: It has to be something that is discussed way ahead of time, and not something that is brought up when people are deciding whether or not to donate. It would have to be specified on the donor card and it would have to be something that you thought about and that perhaps your family has thought about when you're actually signing the card. I would also feel very strongly that it must be an incentive that is offered to everybody across the board. That we don't just draw a line and say "you are poor and you are not poor." Labeling someone as needing this extra incentive to get them to donate would be highly inappropriate and could backfire.
Nancy Scheper-Hughes: Of all the possible inducements or incentives that could be used, I find least offensive the idea of helping people with their funeral expenses. Except I don't know exactly which population would be moved by that. But with the other proposals - tax relief, cash payments - you're really talking about a rampant culture of commodification and commercialization.
Walter Robinson: What other kinds of social policies, aside from monetary payments, should be used to increase the donor pool? How far would you be willing to go?
Clive Callender: Financial incentives are not the answer. There have been enough surveys over the last 20 years so that we really know why people don't donate. The first obstacle is inequitable allocation. The number one reason why people are unwilling to donate is that they don't believe there's a level playing field. The community is the most effective and most economical change agent that I know of, and we underutilize that population, the community itself. Then, of course, we've identified the lack of education, the lack of transplant information, religious misconceptions, distrust of the health providers, the fear of a premature declaration of death after you sign a donor card and of course, racism. These are all concerns that have to be addressed with community education and empowerment, recognizing that financial incentives are one of the things that you want to try because the number one problem in transplantation today is the shortage of donors.
Margaret Lock: I believe that other kinds of recognition of donor families and donors are very important. There are now programs where, without bringing specific people together, donor families en masse meet with recipients en masse and there is open discussion about how families felt about what they did, and how grateful recipients are for what happened. It seems to me that if more of those kinds of programs were promoted it could help quite a lot.
Audience member: Certainly everybody would abhor what goes on with impoverished people selling organs. But these are two different subjects. I don't think the abhorrence of that practice should carry over to what we do and don't do in order to improve the percentage of cadaveric donors.
Nancy Scheper-Hughes: In the research that I've done in this country, as well as in other countries, there's a general assumption that cadaveric organs are not going to meet the demand. The real problem for me is how to deal with the much larger issue of the galloping move to living and unrelated donation. I'm much more uneasy about that than about incentives for the dead. It's a fallacy to assume that you can keep these domains separate. If we create a climate of commercialization, the living and the dead begin to affect each other and to spill over into each other. So for example, one backlash to these proposals is a little group called Organ Savers whose response is "If there's money to be made it's much better to do it while you're alive and sell yourself for a higher fee." We're talking about cultural attitudes and beliefs, and while specialists and surgeons and physicians can easily make these distinctions, to the culture at large the distinctions are largely artificial. Audience member: In signing up to be an organ donor you think that you're doing a very altruistic thing by giving an organ to save a life. It's disturbing to me to think that maybe some of the tissue is going to companies to make products that will make them money.
Nancy Scheper-Hughes: Some tissue banks have not been completely open with donors and have often used a practice that should be roundly condemned called the "fictitious recipient." As a way of getting a family member to donate tissues they invent a story, such as "There's a 15-year-old child waiting for skin in a burn unit and if you would give your husband's or your son's skin you'll be giving life to that person." But it later turns out that there was no needy patient. If we're going to maintain a mixed economy of altruism and commercialism, then donors should have the option to check a box that would say "I am willing to donate only to hospitalized patients" or "I have no objection to part of the donation being used in a commercial way." There has to be truth in disclosure and there should also be regulation of tissue banks. I don't know why there's such resistance at UNOS to taking it on. I think they have not wanted to be tainted by the frank commercialization.
Clive Callender: UNOS is not charged with accountability relative to tissue. And it appears as though no one is. That's the problem. Tissue needs to be regulated just as organs are, because organs and tissue are donated by families with the belief that they are going to help someone in need. When you go to the pearly gates believing you've helped some 30 people you want to know that's real and not a game that's been played.
Footnotes
1 Joralemon D. Shifting ethics: debating the incentive question in organ transplantation. J Med Ethics 2001;27:30-5.
2 Radcliffe-Richards J, Daar AS, Guttmann RD, Hoffenberg R, Kennedy I, Lock M, Sells RA, Tilney N. The case for allowing kidney sales. International Forum for Transplant Ethics. Lancet 1998;351:1950-2.
3 Albert T. Paying donors for organs sparks hot ethics debate. American Medical News. Dec. 24/31, 2001 (http://www.ama-assn.org/sci-pubs/amnews/pick_01/prsa1224.htm).
4 Arnold R, Bartlett S, Bernat J, Colonna J, Dafoe D, Dubler N, Gruber S, Kahn J, Luskin R, Nathan H, Orloff S, Prottas J, Shapiro R, Ricordi C, Youngner S, Delmonico F. Financial incentives for cadaver organ donation: an ethical reappraisal. Transplantation 2002;73:1361-7.
5 Callender CO, Miles PV. Obstacles to organ donation in ethnic minorities. Pediatr Transplant 2001;6:383-5.
6 Lock M. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley CA: University of California Press, 2002.
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