HEALTH HORIZONS : MEDICINE : A Literal Gift of Life : Organ donations are saving lives, but a shrinking donor pool has caused many to re-evaluate the system for transplants.
Kathy King, Christopher Turner and Janet Moland have never met. But they share a common bond--their lives have been, or will be, changed forever because of the transplantation system in the United States.
King, owner of an advertising agency in Marietta, Ga., received a human heart valve transplant in February, 1988. She says it was no coincidence that she picked that month for her surgery because February is National Heart Month and also lays claim to Valentine’s Day.
Turner, a 17-year-old Downey high school student, was on a waiting list at the Regional Organ Procurement Agency of Southern California for 13 months before receiving a new heart on Aug. 19. “It’s liked putting a new engine in an old car,” says his father, George Turner. “We finally have our son back. It was a long 13 months.”
Moland, of Cincinnati, got “every mother’s nightmare”: a middle-of-the-night phone call telling her that her son, Greg, had been killed in a car accident. She made the decision to donate Greg’s organs and tissues just after he was declared brain dead and before anyone in the hospital made the request. “Looking back I can see I made it very easy for them because they didn’t have to ask,” Moland said.
The experiences of King, Turner and Moland reflect those of thousands of Americans who are recipients or candidates for an organ transplant, or who have made the decision to donate.
On the surface, the future of transplantation appears limitless. One-year success rates for most organ transplants are in the 70% to 90% range; an astounding 300,000 tissue transplants are performed each year; more than 40,000 American regained their sight in 1991 because of a corneal transplant, and a new generation of powerful immunosuppressive drugs to treat rejection are in various stages of clinical trials and expected to be available in the mid-1990s.
FK506, a drug being tested in FDA trials, appears to be considerably more powerful that cyclosporine, the primary anti-rejection drug in use today.
However, since 1988, when Moland made her decision to donate and King received her heart valve, the waiting list for organs has nearly doubled while the number of donations has stayed the same or dipped.
The United Network for Organ Sharing, the group that administers the U.S. Organ Procurement Transplant Network, has reported more than 30,000 Americans on waiting lists for a kidney, heart, liver, pancreas, heart-lung or single/double lung transplant. In 1988, just 13,000 were on the waiting list.
UNOS estimates that more than 2,500 patients died in 1990 while waiting for an organ transplant.
The problem was driven home dramatically last week when a 26-year-old Burbank woman died 30 hours after doctors at Cedars-Sinai Medical Center transplanted a pig’s liver into her body until they could locate a human liver.
The crux of the problem is not Americans’ unwillingness to become donors. Opinion polls consistently show 60% to 70% of Americans support donation and would donate the organs of a family member if asked.
The problem lies within the system and a combination of factors that have led experts to understand that the potential donor pool is considerably smaller than once thought.
A major new study conducted by Roger Evans, senior research analyst for Battelle Human Affairs Research Centers in Seattle, provides a graphic picture of the state of transplantation in the United States.
Evans reports that since 1980, there have been 102,643 organ transplants in this country. Between 1982 and 1990, the total number of kidney, heart, liver, heart-lung and pancreas transplants performed annually rose from 4,768 to 15,136. However, the number of donors during that period has only doubled, going from 2,138 annually in 1980 to 4,357 in 1990, despite relaxed criteria for selecting donors.
Part of the problem is caused by a shrinking donor pool. Ten years ago the federal Centers for Disease Control estimated that the potential number of eligible donors per year ranged from 13,750 to 29,000. Recent studies indicate that those figures are much too optimistic. Evans projects the potential donor supply to be between 6,900 and 10,700 annually, and places the most “realistic estimate of potential donors at 7,300 each year, based on a 53% to 68% rate of consent to donate.”
The Partnership for Organ Donation, a Boston-based nonprofit organization conducting pilot programs in four U.S. locations, has released findings indicating that the donor pool may be 14,500, well under the CDC estimates.
The reasons for the smaller pool have less to do with faulty arithmetic than developments throughout the 1980s, including the AIDS epidemic (estimated to have reduced the donor pool by 10%), and states passing seat belt and motorcycle helmet laws, which led to fewer fatal motor vehicle accidents.
The only recourse for increasing the number of donor organs is to persuade a larger percentage to donate. Because an overwhelming number (70%) of donors are multiple organ donors, it would not take a major increase in the consent rate to eliminate waiting lists for all except kidneys. Kidney patients do have the alternative of undergoing dialysis treatments, or getting a kidney from a live donor. But a 20% increase in multiple organ donors could eliminate the wait for a pancreas transplant.
Combine Americans’ attitudes about donation and the relatively small numbers of donors, and it is apparent that something in the system is not working.
Experts ranging from transplant surgeons to lawyers to ethicists are debating a variety of proposals to reduce the shortage.
Recently, much attention has focused on providing financial incentives to donate, such as payment of a lump-sum death benefit or paying for funeral expenses. Others advocate overhauling the system of “expressed consent,” in which the individual must choose the option of being a donor, and replacing it with “presumed consent,” in which the individual is automatically a donor unless he or she instructs otherwise.
Some reforms or proposals being debated include:
- Financial incentives
In February, 1991, a panel of experts meeting under the auspices of the National Kidney Foundation gave this once taboo subject its blessing for further discussion. The panel concluded that ethical and legal considerations do not rule out offering payment for donation. The panel called for a national survey of public attitudes on the subject and recommended pilot studies be conducted.
Dr. Thomas Peters, a transplant surgeon at the Jacksonville, Fla., Transplant Center and longtime advocate of financial incentives, supports making a death benefit payment of $1,000 available, which families can accept when they agree to donate a relative’s organs.
(The total cost of transplants themselves range from about $40,000 for a kidney to $145,000 for a liver.)
Many ethicists and transplant professionals strongly disagree with the kidney foundation panel and Peters. Dr. Edmund Pellegrino, a medical ethicist at Georgetown University in Washington, believes that offering financial incentives would lead to the “commercialization of consent.”
“Why should the donor receive $1,000 for agreeing to donate his or her organs in anticipation of death?” Pellegrino argues. “What will keep the price from escalating if an insufficient number of organs are procured? . . . a black market of covert payments exceeding the going rate is certain to rise.”
A number of polls of health care professionals have found a significant majority--60% to 80%--firmly oppose offering payment for donation and would feel uncomfortable presenting the option to the family. However, a telephone survey of 1,000 Americans taken for Time magazine last June suggests that health professionals and ethicists may be out of touch with the public’s attitude on the matter.
When asked how they would choose if they or a close relative had a fatal disease that could be cured by a transplant, 56% said they would be willing to purchase the necessary organ or tissue.
That coincides with the results of a UNOS survey published in 1991 on public attitudes about financial incentives, which found that 52% of the respondents favored some financial or other type of compensation. Only 22% were opposed to any compensation, 5% thought it would lead to abuses in the system, and 2% believed that it would lead to a black market in organs.
Lloyd Cohen, a Chicago lawyer, advocates creating a market system in cadaveric transplant organs and tissues. Cohen supports establishing a “futures market” that would allow individuals to “contract for the sale of their body tissue for delivery after their death.”
In Cohen’s rather complicated system, once an enrolled person’s organs are recovered and transplanted after his death, “a payment in the range of $5,000 for each major organ and lesser amounts for minor tissues would be made to the donor’s estate or designee.”
- Presumed consent
Health care professionals appear to be doing an about-face on whether the U.S. system should be changed to one that presumes donation in the case of death unless the individual had stated otherwise.
The National Kidney Foundation panel on presumed consent found the idea of change premature. They based their opinion on, among other things, a feeling that physicians would be reluctant to embrace the idea. However, a survey of 100 transplant physicians and surgeons conducted last October revealed that 78% were in favor of the United States adopting a presumed consent system of donation.
The medical community could be reacting in part to reports indicating that Austria, Belgium and France all have a higher rate of donors per million than the United States and each has a presumed consent law. Many experts fear that adopting presumed consent will lead to a plethora of lawsuits challenging the system’s right to remove organs and tissues without family consent.
However, Carl Cohen, a professor of philosophy at the University of Michigan Medical School, strongly disagrees, saying that once presumed consent was adopted “we will wonder why we ever had it any other way.”
Ultimately, it will be the public, not the medical community, legal profession or medical ethicists who will decide how the organ and tissue procurement system will evolve. When asked if he favored some economic incentives for donation, George Turner, Christopher’s father, said he is not against it if it will sway someone who was teetering on making a decision that can save someone’s life.
Kathy King supports financial incentives if it is in the form of a burial benefit but is unsure if presumed consent would work because of certain group’s religious beliefs. Moland made her decision without any more incentive than that it was the right thing to do. “Even if I hadn’t talked about it with Greg, I would not have hesitated,” Moland said.
More than 50 health care organizations and pharmaceutical companies have joined with UNOS to form a Coalition on Donation to conduct a nationwide public education effort to increase donation.
The coalition’s goal, said its chair, Dr. James Wolf, a Chicago transplant surgeon, is to make it socially unacceptable not to donate organs and tissue upon death. “I think if we can somehow give the same message to everybody--in schools and the workplace--we can convince people that not only do you not smoke at cocktail parties, not only do you put your seat belt on, but you donate your organs and tissues when you die,” Wolf said.
Patients Waiting for Transplants
Some patients are listed with more than one transplant center, therefore the number of registrations may be greater than the actual number of patients.
PERCENTAGE of Registrations on the National Waitlist as of June 30, 1992
By Sex and Organ:
Sex Kidney Liver Pancreas Heart Heart/Lung lung F 42.81 47.74 44.49 16.02 57.41 M 57.19 52.26 55.51 83.98 42.59
*
By Organ and Age When First Entered on Waitlist:
Age Kidney Liver Pancreas Heart Heart/Lung Lung 0--5 0.42 12.47 0.39 2.41 1.23 0.58 6--10 0.53 2.51 0.26 0.39 1.23 1.85 11--18 3.33 3.86 0.13 1.75 12.96 6.58 19--45 57.29 35.50 88.98 27.11 70.99 48.73 46--64 34.60 41.23 10.25 65.46 13.58 41.34 65+ 3.84 4.42 0.00 2.88 0.00 0.92 Total waiting 20,953 2,149 771 2,571 162 866
Source: Transplant News
