A 3-year-old child, her fierce parents and a group of doctors are introducing many of us to one of the most disturbing debates within medical ethics.
The child is Amelia Rivera. She has a rare chromosomal disorder called Wolf-Hirschhorn syndrome, which causes severe developmental delays. She also needs a kidney transplant within the next six to 12 months.
According to her mother, Chrissy, doctors at the Children’s Hospital of Philadelphia told her on Jan. 10 that her daughter is not eligible for a transplant because she is “mentally retarded.”
Chrissy said hospital officials explained that even though the family planned to try to find a donor match, the doctors planned to recommend against Amelia receiving a transplant. She said they suggested it was unlikely that Amelia would be able to faithfully take the appropriate medications and dosages that she would need to sustain the new organ.
Chrissy’s wrenching account, which she published on a blog dedicated to Wolf-Hirschhorn syndrome a few days ago, passed from one reader to another. It was picked up by Twitter followers and spread through the hashtag #teamamelia. It has now inspired an online petition asking the hospital to reconsider. As of this writing, the petition had more than 20,000 signers.
The hospital will nether confirm nor deny Rivera’s account because of privacy rules. Officials sent me statements, which they also posted on the hospital’s Facebook page, which say they will review their policies. The statements also deny that hospital officials disqualify patients for transplants “on the basis of intellectual disabilities.”
Rivera told me that because the story is spreading, she and her husband have been invited to meet with the transplant team, which they plan to do.
In the meantime, the case has exposed a fact usually not discussed so publicly: Intellectual disabilities are sometimes considered a reason to deny a child a transplant organ.
David Magnus, a Stanford University biomedical ethicist who has studied the issue, says transplant centers are “all over the map” in considering intellectual delays.
In a 2009 report published in Pediatric Transplantation, Magnus found:
“Thirty-nine percent of programs stated that they ‘rarely’ or ‘never’ consider NDD [neurodevelopmental delays] in their decisions, whereas 43 percent of programs ‘always’ or ‘usually’ do. Sixty-two percent of programs report that informal processes guide their use of NDD, and no programs describe their process as ‘formal, explicit, and uniform.’ The degree of delay is an additional source of discordance among programs, with 14 percent of programs reporting mild or moderate NDD as a relative contraindication to listing and 2 percent reporting that NDD was ‘irrelevant’ to the listing decision.”
In essence, Magnus wrote, “The use of NDD in pediatric solid organ transplant listing decisions is varied and inconsistent across active programs.”
I also asked Arthur Caplan, the head of the Center for Bioethics at the University of Pennsylvania (which is affiliated with the Children’s Hospital of Philadelphia), about the ethical framework involved in these decisions.
He walked me through all the reasons doctors may decide to deny a child the opportunity to receive an organ, including medical issues, quality of life considerations and life expectancy.
He said that doctors might debate the issue when a child is in a vegetative state or if the child is institutionalized — a situation that increases chances for life-threatening infections after transplants and where medications cannot be as effectively monitored. But, he said, when a child is not institutionalized and is being cared for by parents, those issues do not exist.
Magnus said that teens with intellectual disabilities who are cared for by parents are actually more likely to follow medication protocols than typical teens who might rebel.
Of all the considerations Caplan said are ethically valid, intellectual abilities alone were not among them. Though that has not led to a reliable ethical standard.
“I do know many centers take it into account when they are putting a value judgement to quality of life,” Caplan said. But, “in my opinion, that’s bias.”