Soliciting for gift of life’ causes controversy

Does direct organ donation rob more needy patients?

A Texas man whose family circumvented the national organ donor registry by mounting an Internet and billboard campaign asking for a donated liver not only was successful in obtaining a liver, but also succeeded in escalating the national debate over the ethics of soliciting anonymous directed donations.

"I think it’s pretty straightforward — jumping ahead on the waiting list is not fair," says Peter Ubel, MD, professor of medicine at the Univer sity of Michigan and director of the Program for Improving Health Care Decisions at Ann Arbor VA Medical Center and University of Michigan.

But to families of the 87,000 patients awaiting organ transplants in the United States, the notion of doing something to boost their loved ones’ chances of rising to the top of the list can appear essential, especially given the national rate of donations (approximately 8,200 donors between January and October 2004).

Organs for transplant are donated primarily in three ways:

  • anonymous, open donations, in which a patient or his or her family gives permission for organs to be taken at death and donated to candidates who have risen to the top of a national registry;
  • directed donations made by family members to other family members, such as a person who donates a kidney directly to a sibling who needs it;
  • organ exchanges, in which a person donates an organ to an anonymous recipient and, in exchange, that person’s relative or friend in need of an organ receives priority for available donor organs.

"But in cases like [the Texas man’s], families who have the resources and savvy to get publicity, or have an attractive candidate, will jump the line," Ubel says.

ToddNeedsaLiver.com

The man whose transplant touched off the recent controversy is Todd Krampitz, 32, of Houston. In May, Krampitz went to a hospital because of severe abdominal pain, and was found to be suffering from a liver cancer so extensive that it was unlikely he would ever rise to the top of the waiting list for an organ. Medical experts said a transplant would not eliminate Krampitz’s cancer, so he was not considered a good candidate to receive a donor organ.

Believing they had no alternative, his friends and family publicized his plight by a billboard and a web site — www.ToddNeedsaLiver.com — and, within a week, a family requested that their dying relative’s liver go to Krampitz rather than to an anonymous recipient who likely would have been higher on the registry maintained by United Network of Organ Sharing (UNOS), the organization mandated by Congress to set rules for organ donation and maintain the national waiting list.

The type of directed donation made to Krampitz is legal, but unusual — most directed donations come from living donors who give whole or partial organs to a relative or friend. But there were enough questions about the procedure that at its June meeting, the UNOS board of directors ordered that an ad hoc committee be assembled to study the growing number of public solicitations for donor organs.

Annie Moore, spokeswoman for UNOS, says that although directed cadaveric donations are allowed by federal law, only a handful have been reported each year. She says UNOS had decided it was time to study public solicitation before the Krampitz case arose. "At the June board meeting, members acknowledged that it’s an emerging issue, and a special committee was formed to make recommendations on that topic," she states.

The committee still is being appointed at press time, but the board’s aim is to have a preliminary report presented at its meeting in November, according to Moore.

Among the concerns of the UNOS board is that solicitation for organs can cause donors to direct organs to those who can draw the most attention, rather than the patients in the most critical need.

In the meantime, the idea is gaining in popularity, with other sites like ToddNeedsaLiver.com now on-line.

Are donations justified by lack of supply?

During 2002, more than 24,000 organs were transplanted in the United States — nearly 18,000 from deceased donors, and 6,600 from living donors, according to the Scientific Registry of Transplant Recipients in Ann Arbor, MI. During the same period, more than 6,000 patients were reported to have died while waiting for a transplant.

Although the American Medical Association (AMA) does not have guidelines on use of organs obtained through directed donation or public solicitation, it does state that the allocation of any limited medical resource be based on ethically appropriate criteria such as urgency of need and the likelihood of benefit.

Critics of directed donations argue that in some cases, there are much sicker patients in need of the organs than the patients to whom they are directed.

Ubel says the only argument he can see in favor of directed donations solicited publicly is that someone may be moved to donate organs when they otherwise would not.

"In these cases, you let someone skip the line, and as far as I am concerned, the only justification would be if that [donor] family would donate only if they could direct it," he says.

The UNOS ethics committee has been weighing the benefits of public solicitation (specifically, the potential that it could cause an increase in the number of donations) vs. the ethical and legal implications.

Mark Fox, MD, PhD, chairman of the UNOS ethics committee, says concerns range from making sure federal and state laws are observed — for example, that directed donations are not directed away from certain religious or ethnic populations, and that no money is exchanged between donors and recipients — to the question of how best to use such limited resources. Should emphasis be placed on giving donor organs to patients who have the best chance of recovery, or should all patients in need of organs be given equal access to donated organs even if their health does not give them good long-term prognoses?

Give an organ, get an organ

There are types of directed donations that rarely raise ethical questions — living donations of kidneys between family members, for example.

Another, more recent method of obtaining a better chance for a donor organ is the donor exchange. UNOS permits patients who are waiting for kidney transplants to move up on the list if a family member donates a kidney to an anonymous patient in need — Ubel says that unlike a patient soliciting for anyone to give an organ, the donor exchange model keeps the transplant candidate in line and under UNOS’ established criteria for a transplant, but merely helps expedite the wait.

"Under the donor exchange program, two people get transplants who wouldn’t get them otherwise," he says.

Tufts-New England Medical Center and the New England Organ Bank in Boston introduced their collaborative "Hope Through Sharing" program three years ago, to encourage organ donations. The program was approved by UNOS to expedite transplant patients whose friends or family members have donated kidneys. Although UNOS does permit transplant patients to be expedited when participating in a donor exchange program, that permission does not put donor exchange patients ahead of patients with medical emergencies or with special matching restrictions (individuals needing multiple organs, for example).

Richard S. Luskin, executive director of the New England Organ Bank, says living donations "keep the waiting list from being even longer."

"The exchange program, by allowing a medically incompatible family member to donate to the transplant list, expands living donation and [helps] reduce the number of patients waiting for kidneys," Luskin says.

Private membership services have tailored the exchange program idea into programs they say will allow members to obtain donor organs for themselves or family members more easily. LifeSharers, based in Tennessee, asks that members agree both to donate their organs when they die and direct those donations to other LifeSharers members. In exchange for this, the LifeSharers members get priority on organs donated by other members, according to the group’s web site.

However, UNOS requires that directed donations be made to a specific person, and not to a group (such as, "a member of LifeSharers who needs a kidney"), and has been critical of organizations that it says takes advantage of desperate families. In particular, UNOS has specifically criticized organizations that charge a fee to participate.

LifeSharers, in a reply issued in response to questions on patient selection, states that it "does not interfere with UNOS’ matching process," and merely instructs members to direct that their organs go to the highest ranking, qualified LifeSharers member on the UNOS waiting list.

Transplant centers have leeway

Hospitals and transplant centers are under no obligation to carry out transplants that the institution deems unethical, and certainly none that it believes are illegal, experts say.

Directed donation is allowed by state law (although some restrictions may apply in certain states), and is a legal alternative to the UNOS allocation policies. So, for the most part, such donation requests are honored as long as the recipients are available and medically suitable to receive the donations, according to Moore.

But in some cases, transplant centers can and do refuse, Ubel points out. "If someone decides to donate, but only to a Christian, or specifies that his organs cannot go to an African American, it’s pretty well established that transplant centers don’t have to do that and can turn those cases down," Ubel says. "And in those cases, they’d be morally right to not allow it.

"But [transplant centers and surgeons] are obviously torn. If a person in their care who is way down on the [UNOS] list makes a public appeal for an organ, and gets one, do they turn it down? It’s tragic that people die waiting for organs. [Football great] Walter Payton died waiting for a liver transplant; he could have made a directed appeal, and people would have donated, and I admire him for not doing that."

Sources

  • Howard Markel, MD, PhD, Center for the History of Medicine, 100 Simpson, Box 0725, Ann Arbor, MI 48109.
  • Mark Fox, MD, PhD, Chairman, Ethics Committee, United Network for Organ Sharing, 700 N. Fourth St., Richmond, VA 23219. Phone: (804) 782-4800. E-mail: mark-fox@ouhsc.edu.
  • LifeSharers, 6509 Cornwall Drive, Nashville, TN 37205. Phone: (615) 351-8622. Web: www.lifesharers.com.
  • Richard Luskin, Director, New England Organ Bank, One Gateway Center, Newton, MA 02458. Phone: (800) 446-6362. E-mail: info1@neob.org.
  • Scientific Registry of Transplant Recipients, University Renal Research and Education Association, University of Michigan, 315 W. Huron, Suite 260, Ann Arbor, MI 48103. Phone: (734) 665-4108. Web: www.ustransplant.org.
  • Peter Ubel, MD, Professor of Medicine, University of Michigan; Director, Program for Improving Health Care Decisions, Ann Arbor VA Medical Center and University of Michigan, 300 N. Ingalls Building, Room 7D21, Campus Box 0429, Ann Arbor, MI 48109. Phone: (734) 615-8377. E-mail: paubel@umich.edu.