Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: MONDAY, February 22, 1993 TAG: 9302220094
SECTION: VIRGINIA PAGE: A-1 EDITION: METRO
SOURCE: CAROLYN CLICK STAFF WRITER
DATELINE: LENGTH: Long
FEAR, MYTHS COST OTHERS A SECOND CHANCE
MEDICAL ADVANCES in transplant technology are improving the lives of thousands. But lingering questions about death and dying still keep many Americans from becoming organ donors.
When a Florida newspaper reported recently that the family of a organ donor had been billed for the cost of removing the organs, transplant advocates winced.
Although hospital officials hastily explained they simply had provided the family with an itemized cost accounting - not a bill - the damage had been done. The public, already skittish about the idea of organ donation, caught a sidelong glimpse of the Grim Reaper and didn't much like his expression.
For many readers, it was bad enough for a family to have to make a decision about organ donation in the midst of grief over the loved one's death. Worse, to have the hospital compound the misery by tallying up the expenses in black and white.
Officials with organ procurement agencies and transplant centers say fears about organ donation are magnified when stories, apocryphal or true, are passed on to the public.
A letter to Ann Landers several years ago detailing the horror of one family that was billed after agreeing to donate organs heightened anxieties. Ann's answer got distorted or chopped in many newspapers, spawning hundreds of calls to organ agencies about their practices. Since then, she has been generous in assuring readers that families of organ donors incur no expenses in the donation procedure.
And even while the technology of transplantation improves each year - and the life expectancy and quality of life for transplant recipients rises dramatically - the number of people willing to donate organs cannot keep up with the demand.
The shortage results in long waiting lists for people like Whitney Leftwich, a Roanoke County girl in need of a double-lung transplant, and Michael McClanahan of Roanoke, who needs a kidney and pancreas. Finding organs that match their blood and tissue types is difficult enough. But the scarcity of organs means they may be in worse physical condition by the time their long wait is over.
Some of the fears about organ removal are rooted in myth, others in religion and funeral customs, still others in a distrust of the medical establishment.
Bill Cunningham, senior coordinator of the nonprofit Virginia Organ Procurement Agency, is on the front lines in the battle to educate Western Virginians about organ donation. His agency, one of five organ procurement agencies that operate in the state, is on call 24 hours a day.
LifeNet serves Tidewater and Richmond, the Washington Regional Transplant Consortium serves Northern Virginia, Carolina Organ Procurement Agency serves the Danville area, and Life Resources Regional Donor Center in Johnson City, Tenn., serves far Southwest Virginia.
Cunningham and his colleagues are the ones who sit with families in crisis to discuss the possibility of donating the organs of a relative determined to be brain-dead.
In his seven years with the agency, which covers a region extending from Roanoke to Charlottesville and Winchester, Cunningham has shared the grief of those whose lives are brought up short by a telephone call from a hospital emergency room.
He has experienced the strange stillness of an operating room when the ventilator that maintains the thread of life is turned off.
And he has felt the rush of urgency in the dash to the airport where a hospital helicopter prepares to lift off with a heart or kidney or lung that may mean new life for an ailing person.
"My feeling is that once the brain dies, the spirit goes and the shell remains," he said. "Why bury good organs?"
In Pennsylvania, state Sen. Michael Dawida, D-Pittsburgh, shares that feeling. He is preparing to introduce "presumed consent" legislation that would allow the removal of organs from the deceased unless the donor had stated a previous objection or the next of kin objects.
The bill has generated controversy among civil libertarians on the right and left who suggest the state has no business meddling in the personal decisions of individuals. They equate "presumed consent' with the "unjustified taking" of a body.
"I really knew the firestorm this would create," said Dawida, a Democrat with 15 years' experience in the Pennsylvania legislature.
Dawida believes Americans are leery of dealing with sensitive issues of death and dying. It is why many put off making a will and why a majority of Americans embrace the concept of organ donation (85 percent in a 1990 Gallup Poll) but only 15 percent actually get around to signing the organ donor card and discussing their wishes with their families.
Dawida counts himself among them. Until last month, even he had not signed his organ donor card, "and I couldn't exactly tell you why."
But with more than 29,000 patients nationwide waiting for organs, Dawida believes the legislation is long overdue.
Dawida may have a tough act to sell. A poll conducted late last year for the National Kidney Foundation and the Richmond-based United Network for Organ Sharing found only 38 percent, or about two in five respondents, embraced the idea of implied consent.
Still, the survey found that 18- to 24-year-olds were more likely to support such a concept, signaling a possible shift in thinking about transplantation.
Cunningham is wary of the idea, fearing that hospital personnel will not conduct the kind of thorough medical and sexual history on organ donors that is necessary to assure that the organ is suitable for transplant.
Since Dawida unveiled his presumed consent plan on Tuesday, the proposal has been the source of intense debate on talk shows. But the lawmaker said at least one Pittsburgh host, John Cigna of KDKA, who skewered Dawida on the air, changed his tune when Dawida reminded him how many times he had interviewed children in need of transplants at Pittsburgh's world-renowned Children's Hospital.
Pittsburgh is widely known as one of the best transplant centers in the country.
"They [transplant surgeons] are doing things now that three to five years ago were unthinkable, and they will continue to escalate," Dawida said.
The hope for new breakthroughs in transplantation technology is what keeps Bill Cunningham going, even though he faces more rejection than acceptance when he approaches a family about organ donation. Last year, he talked with 26 families at Roanoke Memorial Hospital alone to discuss the possibility; he was rejected all but six times.
"It's really disturbing why so many people turn us down," he said. "Part of me wants to ask the family why they turn me down."
He believes the biggest obstacle is simply fear "that if you sign an organ donor card or are on a ventilator, doctors won't do all they can to save you," Cunningham said. It is a notion he dismisses as "pure bunk."
In reality, several doctors review the cases of severely brain-damaged patients before determining if the damage is irreversible. No doctor associated with the transplant team participates in that examination and decision.
For some families, there also are concerns that organ donation may preclude an open casket funeral, another myth that Cunningham tries to lay to rest through education.
Cunningham and others in the field believe debunking the myths and educating the public are the It's really disturbing why so many people turn us down. Part of me wants to ask the family why they turn me down. Bill Cunningham Senior coordinator, Virginia Organ Procurement Agency keys to increasing donation. They are learning how to approach families in a way that does not disturb their grieving process.
Charles McCluskey, executive director of the Organ Procurement Organization at the University of Florida, moved quickly when he learned of the accounting snafu at the North Florida medical center.
"Once we heard that this had happened, it was sheer shock," said McCluskey. "We immediately called the hospital to find out if a bill did drop."
The hospital assured the organization that it had not even prepared a bill, but the accounting statement the family received looked enough like a bill to fool them and a reporter.
Nevertheless, the next day the front-page headline read "Mother charged for donating son's organs."
Ironically, McCluskey said, the mother thought bringing the matter to the public's attention would help in organ procurement.
"Florida is a very supportive state in terms of organ donation," he said. "When things disrupt that normal flow, it draws questions in the mind of the public. Any time you have any negative news about organ donation . . . the public looks at that in a very negative manner and it hurts all donation, even though it is not true."
For that reason, McCluskey works hard to establish ties to his donor families so they will truly understand their selflessness.
"The true unsung heroes of transplantation are donors and their families," he said.
The parents of 17-year-old Patrice Jourdan know the healing power of organ donation.
The West Islip, N.Y., teen-ager was traveling with four members of her family and a friend on Interstate 81 near Christiansburg last August when the family's four-wheel-drive vehicle, towing a recreational trailer, spun out of control.
Patrice, who was riding in the cargo area of the vehicle, was thrown out and critically injured. Flown by medical helicopter to Roanoke Memorial Hospital, doctors discovered her brain was irreparably damaged.
Despite the shock, her parents, Edward and Catherine, two sisters and brother were able to make the decision to donate her organs - mainly because they had talked about transplantation long before the accident.
Patrice's grandfather had received a cornea transplant years earlier and the family always remembered the donor in their prayers.
"We discussd it as a family a lot, so I think when the time came time it was an automatic thing to do," said Catherine Jourdan in a telephone interview from her New York home.
"I know it helped the kids and my husband to cope better with her death," she said. "It was certainly very healing to know that though Patrice was gone, other people had an opportunity to live."