Outcry over disabled girl's transplant care renews eligibility debate

A parent's anguished online plea for an organ transplant for her developmentally disabled daughter and new research on kidney transplantation eligibility among elderly patients have refocused attention on the vexing decisions that face physicians who determine which patients are suitable for transplantation.

In January, Joe and Chrissy Rivera of New Jersey met with a transplant physician and a social worker at The Children's Hospital of Philadelphia to discuss their daughter Amelia's eligibility for a kidney transplant. Amelia, 3, has Wolf-Hirschhorn syndrome, a rare genetic disorder that results in severe physical and mental developmental delays and kills many children by age 2.

The girl's mother wrote angrily about the meeting at a support website for parents of children with the syndrome. In the post, she stated that the physician she met with said Amelia was not a suitable candidate for transplantation given her mental disability, expected quality of life and uncertainty about who could help her comply with the required immunosuppressive regimen as her parents aged.

"We are in the year 2012, and my child still does not have the right to live, the right to a transplant, because she is developmentally delayed," wrote Chrissy Rivera, 36, who did not name the physician who met with her.

The post sparked news media coverage and an online petition signed by 37,000 people -- many of them parents of children with developmental disabilities -- that asks The Children's Hospital of Philadelphia "to allow the kidney transplant Amelia Rivera needs to live." The Riveras, who could not be reached for comment, met with hospital officials in late January. According to The Associated Press, the parents said doctors at the hospital are reconsidering Amelia's suitability for transplant and the girl will undergo a screening process.

A hospital representative would not confirm whether a meeting occurred or discuss any other specifics of the Rivera case, citing rules regarding patient confidentiality. In a statement, the hospital denied discriminating against patients with disabilities.

"We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities," the statement said. "We at [The Children's Hospital of Philadelphia] are deeply committed to providing the best possible medical care to all children, including those with any form of disability."

A spokeswoman for the United Network for Organ Sharing, which oversees organ transplantation in the U.S., said the organization has no policy relating to using mental disability as a factor in determining eligibility for transplantation. More than 90,000 patients are candidates on the U.S. kidney waiting list.

Ensuring transplants succeed

Whatever its ultimate outcome, the Amelia Rivera case raises legitimate questions about what factors physicians consider when determining whether patients are suitable candidates for transplantation, said Summer Johnson McGee, PhD, executive editor of The American Journal of Bioethics.

"It is absolutely reasonable in these kinds of situations to have quality-of-life measures be taken into account," said Johnson McGee, associate professor at the Neiswanger Institute for Bioethics & Health Policy at the Loyola University Chicago Stritch School of Medicine. "However, in this particular case, the child appears to be receiving excellent medical care, so the social concerns about whether Amelia's mom will be there to do the follow-up care in 30 years or so -- it's not relevant, because in a year or two Amelia is not going to be alive [without a transplant]. Those are not the real moral or social or medical issues. They are easy ways out that oftentimes the medical system uses to disqualify people."

Transplant physicians interviewed for this article said mental disability alone does not make a patient ineligible for transplantation, but how such a disability can affect patient outcomes does matter.

"You have to take a larger view of it," said Robert S.D. Higgins, MD, director of the transplant center at The Ohio State University Medical Center. "What is it that the recipient can do to facilitate the successful transplantation procedure? Are they able to comply with the medical regimen? Regardless of race, creed, religion, color or mental capacity, you have to make a decision about whether there is an environment that facilitates the success of the procedure."

Dr. Higgins said that news media reports suggest a supportive environment for Amelia, but he declined to second-guess the hospital's initial decision.

"I can't judge whether the center is right or wrong," he said. "I'm not privy to their deliberations, and it would be premature and inappropriate to draw any conclusions."

Communicating the many factors that go into determining whether to move forward with a transplant is incredibly challenging, said Goran B. Klintmalm, MD, PhD, past president of the American Society of Transplant Surgeons.

"It's difficult to make parents in these situations be able to understand what we're facing on our side," said Dr. Klintmalm, chief and chair of transplantation services at the Baylor-Simmons Transplant Institute in Houston. "All of us are parents, and we understand the fear and the frustration and anger. We understand it extraordinarily well. We have patients dying every day throughout the country. It's not something we can just order up and say, 'I want kidney size so-and-so.' [Parents] understand that to some degree, but they don't really understand it."

Older patients pose challenge

If making the call about whether a 3-year-old child with developmental disabilities is a suitable transplant candidate is difficult, so is the decision about whether to list a senior patient who needs a kidney. The question is whether these patients, given their age and life expectancy, can best benefit from transplantation compared with younger patients.

A study in January's Journal of the American Geriatrics Society uses a newly refined prediction model to estimate that between 1999 and 2006 nearly 50,000 elderly patients on dialysis were "good" or "excellent" candidates for kidney transplantation. That means they were likely to live at least three more years post-transplant. Yet these patients were never added to the UNOS waiting list.

"Doctors routinely believe and tell older people they are not good candidates for kidney transplant, but many of them are if they are carefully selected and if factors that really predict outcomes are fully accounted for," said Dorry L. Segev, MD, PHD, lead author of the study and associate professor of surgery at the Johns Hopkins University School of Medicine in Baltimore. "We have this regressive attitude toward transplantation in older adults, one based on historical poor outcomes in older patients, which no longer hold up. Anyone who can benefit from kidney transplantation should at least be given a chance. They should at least be put on the list."