Organ donation: the gift of life

by Charles Downey

organdonor.gifMany people are alive today and leading productive lives because medical science has become so skilled in transplanting some essential organs. Nonetheless, there is a shortage of donors, and many patients die while still on the waiting list.

A common story making the rounds of parties, e-mails, chat rooms, and bulletin boards tells of an unfortunate young woman who is drugged in a bar and wakes up in a hotel room with a note telling her to call 9-1-1 because her kidney has been removed and sold on the black market.

This tale is an urban myth, ridiculous for at least two reasons: You don't just remove organs; you need a highly skilled medical team with very sophisticated support equipment. Plus, it's illegal to buy or sell human organs in the United States.

But the story does speak to the critical shortage of donated organs.

Who is waiting?

Currently, more than 78,000 very desperate, very ill Americans are waiting for a kidney, heart, liver, lung or pancreas that can save or dramatically improve their lives. In 1998 about 4,800 people died waiting for an organ, according to the United Network for Organ Sharing (UNOS). Livers are the organs in shortest supply, and the majority of patients on waiting lists are men.

How long do they wait?

That depends on where they live. Currently, donated organs are distributed within local areas, then in 11 regions, then nationally.

In 1997, the United States Department of Health and Human Services proposed changes that would enable the sickest people to have access to organs first, regardless of geographic regions. Currently, a liver patient needing a transplant may wait 46 days in Iowa but 721 days in western Pennsylvania. Or, a typical New York patient might wait 511 days for his transplant, while his New Jersey neighbor would have a new organ after only 56 days.

Is there a better way?

To alleviate some of the inequities, the federal government wants to have one national list with "worst-first" cases going to the top.

How are organs matched to a transplant candidate?

However organs are distributed, they are matched by a complex point system devised by UNOS that considers blood type, time spent on a waiting list, medical urgency and other factors. Transplant candidates are assigned a status starting with the most ill and moving down through four other classifications. While age 70 is generally considered the upper limit for receiving organs, donors may be as young as newborns.

Candidates for organ transplantation are carefully screened by their local physicians, and often a transplant team, before their names are submitted for transplant surgery. Many health plans ask organ transplant candidates, if they are well enough, to wait for their organ at a motel or hotel near one of 272 registered U.S. transplant centers. Because this often involves temporary relocation, some plans also pay the travel expenses of a family member.

"The sooner surgeons can get an organ inside a patient, and the fresher the organ, the better his or her chances," says Bob Spieldennen, UNOS spokesman.

Since so many factors must be coordinated, many health plans assign a case worker to organ transplant candidates. Treatment often includes psychological and spiritual counseling for the entire family prior to the transplant, and then follow-up reminders about diet, exercise, lifestyle, and medications after the operation. Any organ transplant requires life-long doses of anti-rejection medications that have a number of side effects.

"If there is any area of health and medicine where the consumer must really educate himself, it is with organ transplants," says Spieldennen.

A typical transplant team includes the surgeon, a specialty physician, an infectious disease physician, a social worker, pastoral care staff, a psychologist, a nurse transplant coordinator, and the health plan's case manager. When a health plan evaluates a candidate for transplant, they usually consider the patient's age and health, the support of family members, substance abuse, and other factors.

For people concerned about the quality and experience of the transplant centers (there are more than 270 centers), the UNOS web site offers outcome and survival rates for each center and other important consumer information. Frequently asked questions include the age of the transplant center, the number of transplants done each year, and the experience and outcome rates of the surgeons.

The criteria for quality—as assessed by both UNOS and health insurers—are very strict. "The minimal survival rate we accept for heart transplants is 83 percent for one year and 79 percent at two years," says Debbie Grinnell-Miller, director of Prudential's Institutes of Quality headquartered in Roseland, New Jersey. "Because people with transplants are living longer, five-year survival rates are becoming the benchmark for assessing quality."

Often, families deny organ donation at the time of death because they think it is against their religion, or that their loved one will be "mutilated" and go to his or her grave "unwhole."

In reality, most organized religions support organ donation, typically considering it a generous act that is the person's, or the family's, choice. Moreover, donated organs are removed surgically, in a routine operation similar to gallbladder or appendix removal. Donation does not disfigure a loved one nor change the way he or she looks in a casket. Normal funeral arrangements are possible.

Nonetheless, many families will not agree to donation. Often, a person who, in life, wanted to donate has not left clear instructions for his next of kin. Even if he or she is carrying an organ donor card at the time of death, no tissues can be harvested unless a family member gives consent. Organ cards can be obtained at your local Registry of Motor Vehicles or downloaded from the Organ and Tissue Donor Initiative.

Organ recipients must closely monitor their health, diet, exercise, lifestyle, and medications, but otherwise they live normal, active lives. Many recipients are so overjoyed about a second chance at life, that they compete in the annual winter and summer World Transplant Games, a series of Olympic-style events for athletic people who have received a major organ. The current Winter World Transplant Games, for instance, offer a dual-gate slalom, a snow boarding exhibition event, and a cross-country ski derby, among others.

Not bad for a group of people who were once on death's doorstep because of a failing vital organ.

UNOS, a private, non-profit organization in Richmond, Virginia, oversees the allocation of organs in the United States. The organization also contracts with the federal Department of Health and Human Services and works with many health professions to establish transplant policies. UNOS additionally serves as a warehouse for information and keeps statistics on donors, transplants, and patient outcomes. The organization tries to reach emergency medical technicians and medical workers who are most likely to come into contact with dying people. UNOS wants health professionals and consumers to know just how desperately those organs are needed.

For more information about UNOS, see the UNOS web site.

Here's what potential donors often ask UNOS staff members:

Who can become a donor?

You should always consider yourself a potential organ donor. Your medical condition at the time of death will determine what organs and tissues can be donated.

What organs and tissues can I donate?

Organs include the heart, kidneys, pancreas, lungs, liver, and intestines. Tissues include eyes, skin, bone, heart valves, tendons, and vessels.

Will my decision to become an organ and tissue donor affect the quality of my medical care?

No. Organ and tissue recovery takes place only after all efforts to save your life have been exhausted and death has been legally declared. The doctors working to save your life are entirely separate from the medical team involved in recovering organs and tissues.

Does it cost anything to donate organs and tissues?

No. Donation costs nothing to the donor's family or estate.

Is there an age limit for donating organs?

No set age limit exists for organ donation. At the time of death, the potential donor's organs are evaluated to determine their suitability for donation. Therefore, people of any age wishing to become organ and tissue donors should complete a donor card and inform their family that they wish to donate.

What medical conditions exclude a person from donating organs?

HIV and actively spreading cancer normally exclude people from donating organs. Otherwise, the organs are evaluated at the time of death.

(Adapted from the UNOS web site "Promoting Donations" page.)