Yesterday in this space, I wrote about the story of 3-year-old Amelia Rivera, who is facing a life-altering decision about whether she is eligible for an organ transplant.

Her mother has publicized her side — that a doctor at The Children’s Hospital of Philadelphia told her that because Amelia is “mentally retarded” she should not receive a transplant. More about that story, including the hospital’s response, is here.

One of the ethicists I spoke with about the scenario sent me the results of research he did in 2009 on how transplant centers evaluate the worthiness of an organ transplant.

These are wrenching ethical decisions. Doctors have to choose whose life is more likely to benefit from the extremely scarce organs available. Available organs are even more scarce for children because they are harvested from cadavers and, as another ethicist told me, “children don’t drive drunk or ride motorcycles.”

At the same time, value judgements on “quality of life” can lead to some disturbing outcomes.

Below are two hypothetical situations that David Magnus, a professor at Stanford University’s Center for Biomedical Ethics, and his colleagues posed to officials at transplant programs across the country. Judge for yourself how well the decisions were made.

Magnus generously worked with me to simplify each of his hypothetical situations (which, in their original format, contained more complex medical language). The scenarios also differed from the originals by organ, depending on if the programs specialized in kidneys, livers or hearts.

The hypothetical situations listed below are for kidney transplant consideration. The results reflect the consideration of all the organ scenarios.

The first (simplified) hypothetical:

A 20-month-old patient comes to your service with a history of kidney disease. The child had a progressive decline in kidney function. Since birth, the child has missed every developmental milestone and requires pervasive medical assistance that is adequately provided by the child’s parents. Now the patient requires dialysis to survive. The referring hospital has assessed her as being ‘‘profoundly neurodevelopmentally delayed.’’ The parents insist that the child derives meaningful benefit from their interactions and ask that the child receive a transplant if needed. A complete work-up of the patient revealed no infections, no concomitant renal disease and a proper nutritional status. 

The second (simplified) hypothetical:

A 13-year-old patient with kidney disease is referred to your hospital by his primary care pediatrician for worsening of his condition. At presentation, the child shows jaundice and the appearance of engorged veins even though he is on intravenous dialysis; the child has become resistent to medical therapy. The patient has no other complications (no infections, no renal disease, and no malnutrition), except that the patient also has Fragile X syndrome and has an IQ of 50. The patient lives at a group home and, although attending school part-time, is at a second grade level and will likely not progress beyond that point. The child’s legal guardians now are looking to the physicians to make decisions about continuing medical treatment and perhaps listing this patient as a transplant candidate. 

How would you decide?

Here’s how the transplant centers decided:.

For the first scenario, 59 percent of respondents reported that their program would list the infant as a potential recipient. Thirty-two percent said their program would not list the infant.

There was a free response section on the survey. There, “13 percent of the respondents mentioned compliance or long-term self care as being important to their decisions, five mentioned the functional prognosis of the delay itself, three mentioned financial considerations, three mentioned a balance between risk and benefit, and two mentioned quality of life,” according to the study.

For the second scenario, 52 percent of programs said this patient would be a candidate, and 25 percent said this patient would not be listed.

In the free response section, “37 percent mentioned compliance or long- term self care of the patient as factoring into their decision, four mentioned financial considerations as contributing to their decision, three mentioned quality of life considerations, and one mentioned the age of the patient was an important factor.”

“We were shocked,” said Magnus. “Particularly at the responses to the second scenario because you have a moderately delayed, highly functioning, individual.”

He said the intent of the researchers was to determine how often transplant officials discriminated against people solely because of developmental delays. “The answer we found was, yes. Sometimes.”

“That is problematic.”

On a side note: After yesterday’s post was published, I received a note from Allison Wohl, a Maryland mother who has written for ”On Parenting.” Allison has a beautiful son named Julian who has Down syndrome.

“So many physicians are biased against people with intellectual disabilities and their ‘quality of life,’” she wrote.

“I wish they could see my kid, riding around in his Bob, friends and fans everywhere he goes, having an absolutely wonderful time, and then make a judgement about his ‘quality of life.’ In any case, people need to know how policies — whether public or hospital or school or whatever — are impacting these kids.”

Related Content:

Understanding a Down syndrome diagnosis