She started with her husband, but learned he had the wrong blood type. Then Greer wrote out a list of family and friends and picked up the phone. “I called all of my cousins, relatives and good friends that I knew from high school and college,” she says. But those with the right blood type were excluded by other factors, such as high blood pressure or being older than 60, the cutoff for donation.
Greer called her cousins back and asked about their kids. “It’s horrible calling people up and asking,” she says, “but it’s life and death.”
One cousin’s daughter had the right blood type and was willing. But “she was a very small girl, and it didn’t feel right to put her on my list of donors,” Greer says.
In a 2005 Gallup poll, 95 percent of Americans said they support organ donation. Seventy-eight percent said they “likely” or “very likely” would agree to donate their organs after death. Yet less than 53 percent sign up to be donors on their driver’s license or through their state’s organ donor registry.
Dr. Laura Siminoff, chair of the Department of Social and Behavioral Health at Virginia Commonwealth University (VCU) in Richmond, has surveyed public perceptions of organ donations. “Over a quarter of Americans believe that if doctors know they’re willing to donate organs, they wouldn’t do as much to save their lives,” she says.
In March 2008, the parents of Gregory Jacobs, an 18-year-old severely injured in a snowboarding accident, claimed doctors at an Erie, Pa., hospital “hastened” their son’s death by removing his breathing tube prematurely in order to harvest his organs. Michael and Teresa Jacobs are now suing the hospital for more than $5 million.
The standard for harvesting most cadaver organs for transplant is a diagnosis of brain death in the patient. Brain death signifies “the irreversible cessation of functions of the brain,” says Dr. Guy McKhann, founding director of The Zanvyl Krieger Mind/Brain Institute at Johns Hopkins University in Baltimore. “When your heart stops, your brain dies very quickly,” McKhann says. However, if your brain stops working first, “the heart can be kept going a long time after,” he says.
And therein lies the problem. The fact that a loved one’s heart is still beating creates a dilemma for families of potential donors. “Half of the general public believes that people who are brain dead are not quite dead,” Siminoff says. “Over a quarter of people asked believe that brain dead people can hear.”
Many also fail to understand the organ removal process. “Less than half of the general public understands that patients are on respirators when the organs are removed,” Siminoff says. Most people assume organs are only removed after a patient has stopped breathing.
The parents of Gregory Jacobs had agreed to donate their son’s organs should he die, according to Dennis Boyle, the Jacobs’ lawyer. Siminoff says that’s rare, unless dead or dying loved ones have made that desire clear in advance. Relatives “tend to err on the side of caution,” she says, “which is non-donation rather than donation.”
Even when an organ procurement organization has the legal right to harvest a patient’s organs, it still must give family members the final say, according to UNOS. No one wants to risk negative publicity and lawsuits that might put future donations at risk.
As a result of relatives’ vetoes, at least 5,000 organs suitable for transplant are buried or cremated each year, Siminoff says.
After several months, Greer still hadn’t found a donor, but she had tested some old friendships. “I have a very good friend in New York who is a Ph.D. and researching cancer,” Greer says. “She said, ‘I’m too busy.’ I don’t blame her, but the way she said it was hard.”
She still felt healthy, but thanks to her research she was keenly aware of what would happen when her kidneys were no longer capable of filtering all the toxins her body produced. Without dialysis, Greer could expect nausea, vomiting, weight loss, bone damage, abnormal heart rhythms, swelling, memory problems and, eventually, death.
Each new call for help to ever-more-distant acquaintances brought a knot to her stomach. Nevertheless she pressed on.
A relative with the right blood type came forward, but after a preliminary screening declined further testing. “The thing that people don’t know is that donating a kidney is not going to injure you,” Greer says. “They’re not going to take it if you’re not healthy.”
In fact, giving a kidney, bone marrow, skin or part of a liver, pancreas, lung or intestine is not without risk for the living donor. About 2 percent of living kidney donors return to the hospital with serious problems such as bleeding, vomiting or infection. But, according to the Johns Hopkins Comprehensive Transplant Center, the surgical mortality rate is low—.06 percent, or six out of every 10,000 procedures. When these risks are explained during screening, some potential donors change their minds.
Dr. Michael Williams, medical director of the Sandra and Malcolm Berman Brain and Spine Institute at Sinai Hospital in Baltimore, has helped define standards for physicians involved with organ donations. “The current allocation system is based on a model that assumes persons can decide if they wish to donate,” Williams says. He supports the voluntary system, but acknowledges a different approach might yield more donors.
In Spain, Austria and Belgium, for instance, the assumption is that everyone wants to donate unless they’ve expressly said they don’t. Donations in those countries increased by 25 percent to 30 percent after “presumed consent” laws were enacted, according to a 2009 British Medical Journal article. But “the majority of Americans do not favor presumed consent laws,” VCU’s Siminoff says. “They think they go against people’s sense of autonomy.”
In an effort to increase donations in the United States, a federal law enacted in 1986 requires hospitals to ask next-of-kin or legal guardians about their willingness to donate a patient’s organs after brain death. The law seems to have had a positive effect. In 1988, there were 5,909 donors. By 2009, the number had more than doubled to 14,631. However, the number of people on the waiting list increased sevenfold during those years: In 1988, only 16,026 were in line; by 2009, the number was 113,987.
As Christmas approached, Nora Greer had reached the bottom of her list.
Her doctor suggested she have a shunt placed in her arm to prepare for the regular dialysis treatments he said she would soon need to stay alive.
Greer couldn’t believe it had come to this. With dialysis, she would be bound to a machine three days a week for three to four hours at a time as wastes and excess salt and water were filtered from her blood. She could never miss an appointment. She would need new medications, and her daily fluid intake would be limited. The treatments likely would leave her feeling exhausted, and a treatment-related infection could land her in the hospital.
