Barriers to Kidney Transplants :Candidates Feel Unworthy of Their New Organs, Study Shows
The night before Ronald Herrick was to have surgery to remove his kidney so he could give it to his identical twin, he received a note from his brother whose life depended on the transplant.
“Get out of here and go home,” Richard Herrick wrote.
“I am here, and I am going to stay,” Ronald Herrick responded.
The exchange between the twins culminated in the first successful long-term transplant of a human organ in 1954. Although the surgery happened 60 years ago, a new study shows that the same concerns that likely prompted Richard Herrick to tell his brother to leave the hospital still trouble kidney recipients today.
Patients with chronic kidney disease worry about the long-term consequences for potential donors and frequently feel unworthy of such a self-sacrificing gift, Camilla Hanson and her colleagues reported online December 1 in Transplantation.
“Some people don’t like to be on the receiving end and don’t like to ask favors,” she told Reuters Health.
“Our study really shows that there’s a whole host of emotional barriers, mainly guilt, that stop someone from asking for, and perhaps accepting, a kidney,” said Hanson, a public health doctoral student at the University of Sydney in Australia.
She examined 39 studies from 13 countries with nearly 1,800 patients suffering from chronic kidney disease and identified themes that present barriers to finding living kidney donors.
In addition to guilt, patients’ worries about jeopardizing donor health, about causing donor inconvenience, about donor regret and about unrelenting indebtedness ran through the literature.
Another thread in the studies - and one that resonated with nephrologists Hanson interviewed for a separate study - was that patients with chronic kidney disease did not know how to approach relatives or friends to ask for one of their two kidneys.
One American patient said, “I would step up like that to give anybody else a kidney, but for me to ask somebody, I couldn’t do that.”
“Rather than ask and get my feelings hurt, I didn’t even ask,” another said.
Organ transplant surgeon Dr. John Roberts told Reuters Health that his patients often hesitate to ask relatives who may want to donate.
“It’s a difficult question to pose to say, ‘Hey, do you want to donate your kidney to me?’” said Roberts, chief of the University of California, San Francisco, Medical Center Transplant Service. He was not involved with the current study.
Kidney transplants from living donors offer optimal recipient survival outcomes, the study says. In addition, shortages of deceased donor kidneys lead to long wait times.
Patients on the waiting list for a deceased donor kidney have only a one in five chance of surviving long enough to get a transplant, Roberts said. The chance for patients with diabetes shrinks to one in 10, he said.
“Without a living donor, your chances of getting a transplant are pretty slim,” he said.
“Frequently the children want to donate, and the parents don’t want the children to donate, and their parents end up dying on dialysis,” Roberts said. “I think it’s really the parents’ fear of their children having a complication, not being able to work and not having health insurance.”
Roberts believes the government should offer lifetime health insurance to kidney donors as an incentive.
Transplant nephrologist Dr. Peter Reese told Reuters Health he also believes lifetime health insurance would provide a fair incentive to living kidney donors.
“I think that would be a good idea from a justice point of view,” said Reese, a professor of medicine and epidemiology at the University of Pennsylvania School of Medicine in Philadelphia. He was not involved with the current study.
In 1954, when Ronald Herrick was preparing to donate his kidney, he asked the doctors if they would assume responsibility for his health care for the rest of his life.
One of the doctors replied that he would not. But then he assured Herrick that the medical team would feel a professional responsibility to care for him.
Reese, who evaluates potential kidney donors, is not in a position to make similar promises.
Today, not only would Ronald Herrick have to figure out his own health insurance, he would not be considered an ideal donor, Reese said. At 23, he was too young in Reese’s opinion to have established life habits that could foretell his ability to withstand losing a kidney, and he shared the same genetic predisposition for kidney disease as his twin.
Richard Herrick lived eight years with his brother’s kidney. Ronald Herrick died in 2010 at 79 years old.
(Story by Ronnie Cohen)