CHOP clarifies policies regarding medical discrimination

In a recent debate that has shaken up both the media and the medical world, a question arises: who has the right to choose who lives and dies?

Last week, the Children’s Hospital of Philadelphia denied three-year-old Amelia Rivera a kidney transplant. Without a transplant or a suitable substitute — such as dialysis — her life could be in jeopardy.

Amelia’s mother Chrissy Rivera told the media her daughter was denied the organ because she is “mentally retarded.”

“The Children’s Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities,” CHOP wrote in a press release. “We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities.”

But Penn Medicine’s Arthur Caplan, a bioethicist who is not allowed to comment on the specific case, explained that physicians can refuse to refer patients to transplant centers to be put on the wait list on the grounds of mental impairment and the ability to care for their organs. He noted that while the Americans with Disabilities Act is supposed to safeguard patients against medical discrimination, it still happens.

“I’ve certainly encountered it,” he said.

Amelia has Wolf-Hirschhorn Syndrome, characterized by an altered facial appearance, delayed growth and development, intellectual disability and seizures. It affects one in 50,000 children. The mental retardation can be anywhere from mild to severe, and the seizures are sometimes resistant to treatment.

Caplan also said because organs are so limited — especially for children ­— giving a disabled patient a transplant can be controversial.

“Why not give someone else a chance at life?” he said, illustrating an ethical question that is often raised. Many doctors take quality of life into account when referring patients to transplant centers to be put on the wait list. Additionally, since Amelia is only a child, she will need multiple transplants throughout her life, he added.

The transplant itself could put a patient at risk since it would require him to take immunosuppresants for the rest of his life, increasing the chance of contracting a deadly virus or developing cancer, according to Caplan. However, Caplan mentioned that larger transplant centers will accept riskier candidates than smaller centers will.

Another option for Amelia would be dialysis.

“If you have a child who’s cognitively impaired, dialysis is tough to go through,” Caplan said. He explained that such treatment would require the regular use of needles and that Amelia would need to be hooked up to a machine several hours a day for three days a week.

There are also health concerns attached to this treatment. “Dialysis is not a perfect mimic of a kidney,” he said, adding that while it is a viable option for some people, others can become sick.

A third option would be for an adult family member to donate to Amelia.

“You can put kidneys from adults into small children,” Caplan said. But he added that this is not feasible if a patient is small or has abnormal body development, or if none of the family members are a match.

“We are also taking action to review all existing policies to make sure that they reflect the core values we live by,” CHOP wrote in their statement.

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