Every day, about nine Americans awaiting organ transplants die before a donor can be found.
That grim fact is not likely to change soon. While waiting lists have nearly doubled since 1988, the donor pool has grown only slightly.
"Organ donation is one of those things that everyone's in favor of, like motherhood and apple pie, but when it comes to doing something about it, nothing seems to happen," says Dr. Alan R. Hull, vice president of the National Kidney Foundation.
Adds William DeJong, Ph.D., adjunct lecturer at the Harvard School of Public Health: "A number of people in the transplant community have overstated what public education can achieve."
Disappointed by the results of public education efforts, Mr. DeJong and other authorities now say it's time to target a new group -- physicians.
To date, little attention has been paid to the physician's role in the process. Yet it's often a doctor who decides whether to find out if a deceased patient is a candidate for donation and who broaches the subject with grieving family members. How well physicians handle their role -- and how willing they are to defer to procurement experts -- can make all the difference, those experts say.
With improved physician awareness, the number of donor organs could be doubled to about 25,000 a year, says Carol Beasley, managing director of Partnership for Organ Donation, a nonprofit Boston advocacy group. Ms. Beasley's group, in collaboration with the Harvard School of Public Health and several organ banks, examined more than 40,000 medical records from 100 hospitals dating back to 1990. They found that physicians failed to identify about one-third of acceptable donors, Ms. Beasley says.
"If doctors and hospitals did their jobs right, clearly we would have a marked improvement in the current situation," says Dr. Peter R. Holbrook, chairman of the Department of Critical Care Medicine at Children's National Medical Center in Washington. "It would translate, at every step along the way, into more donated organs."
Organ procurement and transplantation experts say physician response often breaks down in one or more of the following areas:
* Assessment of donor suitability: For example, physicians wrongly assume that a patient's advanced age or illness is an automatic disqualifier.
* Reluctance to offend survivors: Doctors worry that families will accuse them of being more concerned with retrieving organs than providing quality care. Yet nine in 10 people surveyed by the Partnership for Organ Donation said they believed physicians did everything they could to save lives before seeking organs for transplant.
* Timing of donation discussion: Physicians often broach the subject at the same time they inform survivors of a loved one's death. Family members don't yet fully comprehend that death has occurred and so are put off by the request.
* Explanation to survivors of brain death: Many people equate this prerequisite for donation with a comatose state and believe recovery is still possible. This is one of the biggest barriers to donation.
* Utilization of organ procurement experts: Hospital staff either fail to contact the experts at all, or approach survivors for consent without aid from specially trained procurement professionals.
Yet a recent study by the partnership (to be published in the near future) found that families consented to donation at a far higher rate when they were approached by physicians and procurement professionals working together than when physicians made the contact alone.
"Much of what keeps the donation rates down is within the power of the hospital staff to change," Mr. DeJong says.
But physicians -- especially primary care doctors -- can make the most difference when patients are healthy, experts say.
"Family physicians have an important role to play here," Mr. DeJong says. "The key is to find different ways to get people thinking about this issue, making a decision and then discussing it with their family."
Donor cards not binding
Incorporating family discussion is essential, Mr. DeJong notes. Donor cards are not legally binding, so hospitals always require family consent. And if family members don't know what the patient would have wanted, they are half as likely to approve, according to "The American Public's Attitudes Toward Organ Donation and Transplantation," a 1993 survey by the Gallup Organization.
"Prior to the crisis, during the normal routine of a physical or some other routine doctor visit, it would be a relatively simple thing for the physician to give patients information about organ donation that they can take home, just as a reminder, to encourage them to talk to their families about the issue and what they would want done," Mr. DeJong says.
"We have to be inventive in finding ways to remind people to talk about it. Simply mentioning it is not enough."
Not everyone agrees that more responsibility should be laid on physicians. With the pressures on primary care physicians to see more patients, it's unrealistic to expect them to educate patients about organ donation as well, says Dr. Alan Hull, a clinical professor of internal medicine at the Southwestern Medical School of the University of Texas in Dallas.
"It sounds great. But it does take a lot of extra time, and there's no direct benefit for that doctor."
Dr. Hull says he thought the solution to the shortage lay in using more organs of living relatives -- to transplant kidneys -- and more animal organs, such as from miniature pigs -- to replace human hearts, livers and kidneys. "We should be able to do 20 percent of future kidney transplants from living-relative donors, about 5,000 to 6,000 a year. It would be a huge increase."
Others favor more controversial approaches.
Money for organs
One involves paying donor families for organs. In the 1993 Gallup Poll on organ donation, 20 percent of respondents said they would be more likely to donate if there was a financial incentive to do so. Payment for organs is currently illegal.
The AMA Council on Ethical and Judicial Affairs last year endorsed limited financial incentives, in the form of a modest insurance payment, to be agreed upon in advance with the prospective donor.
Others advocate that states enact "presumed consent" laws, which would allow organs to be removed at death unless family members object. Similar laws in several states now permit removal without family consent of corneas, pituitary glands and other tissue. The AMA ethics panel has expressed concerns about presumed consent because it severely restricts freedom of choice, says AMA Council Secretary David Orentlicher, an M.D. and doctor of law.
The council is about to release a report addressing whether organs should be removed immediately after the heart stops beating from patients who ask that life-sustaining support be discontinued. This would improve the quality of organs available.
A related proposal advocates injecting cadavers with a solution to keep organs viable until they can be requested and removed.
These issues go to the heart of the procurement system, which is currently based on the notion of altruism. Medicine can't decide them unilaterally, says Dr. James Burdick, who directs the transplant service at Johns Hopkins Medical Center in Baltimore.
"Doctors alone shouldn't be saying, 'This is the thing to do,' " Dr. Burdick says. "Doctors and society need to decide these things together."
PROCEDURES
Rules on which hospital personnel will get involved, donor suitability and family consent standards vary slightly among hospitals and organ procurement agencies. In general, the process occurs this way:
* A hospital nurse or physician identifies a potential donor -- a brain-dead patient with healthy organs -- and notifies a local procurement agency.
* The donor is kept on a respirator to keep tissues and organs viable.
* The nurse, physician or procurement official approaches the family about donation. Most states have "required request" laws, making it mandatory for the hospital to ask. If agreeable, the family signs the donor-consent form. Family permission is needed even when the patient has signed a donor card.
* The organ-procurement agency or hospital donor coordinator evaluates the potential donor. The coordinator arranges for surgical team.
* Organ retrieval surgery takes place. Complete operating room staff is needed for multiple organ retrieval, and a special surgical team usually is required to remove heart, liver or pancreas.
* A preservationist arranges transport of organs to a local agency, where they are matched to potential recipients and distributed. Tissue typing, when needed, takes eight to 12 hours.
* The recipient gets a pre-operative work-up.
* Transplant surgery takes place.
* The procurement agency handles follow-up, including letters to the donor family, staff physician and nurses about transplanted organs.
MISCONCEPTIONS
Misconceptions abound about organ transplants and organ donations. Here are some common myths and how doctors should respond:
* "My family will get stuck with extra bills." The donor family incurs no expenses. Costs are borne by the organ procurement agency and the recipient's insurer.
* "If I sign a donor card, they'll be more interested in taking my organs than saving my life." Health professionals are first dedicated to saving lives. Organ donation isn't even considered until a patient is declared brain dead.
* "I'll be mutilated." Organs are removed without disfiguring the body. Donors can still have an open-casket funeral.
* "I'm too old" or "My loved one is too young." There is no age limit on donation. Though rules vary among procurement agencies, the primary criterion is the donor's overall health status and the health of his/her organs at time of death.
* "I won't be able to get to heaven." Most major religions endorse organ donation and favor organ transplantation.
FOR MORE INFORMATION
* American Heart Association, (800) 242-1793, inquiries department, ext. 1493 or 1220
* American Lung Association, (800) LUNG-USA
* National Kidney Foundation, (800) 622-9010
* Partnership for Organ Donation, (617) 482-5746
* United Network for Organ Sharing (national organ procurement and transplantation network), (800) 24-DONOR or (804) 330-8561