Quality

Kidney Transplant, Children's Healthcare of Atlanta, Quinnlin Roberts with surgeons Larson & Pearson with reporter Julie Wolfe, 11Alive

If you are a member of the disability community and are not currently dwelling in a remote cave or Amish village, you have by now heard the story of the Children’s Hospital of Philadelphia and the decision by one of its transplant doctors to deny a kidney transplant to three-year-old Amelia Rivera at least in part because of her developmental disability. She was ineligible, the doctor said, because of “her quality of life”, or presumed lack thereof.

There have been a lot, a LOT, of responses to this story, as well as an online petition that has received a pretty staggering number of signatures in a short period of time. The hospital itself has released a brief statement, which reads in part:

We strive to provide the safest possible care for our patients and we make transplant eligibility decisions based on widely-accepted, medically valid methods, with many factors considered. We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.

The hospital certainly had some wiggle room; Wolf-Hirschhorn Syndrome typically manifests with a number of challenges, some of which might very well disqualify a transplant recipient from receiving an organ. But that point is largely irrelevant now, because of the transplant doctor’s statements and, more to the point, the hospital’s statement. In particular, one word jumped out at me, twice, and I hope it jumped out at you, too.

“We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status…”

“Solely.”

So while the hospital maintains (as much as HIPAA allows, I suppose) that other factors might make this story more complicated that it might at first appear, that means nothing. Because the hospital is admitting, quietly and with the use of that one weasel word, that developmental disabilities and the question of “quality of life” are factors in their decision-making process.

This question of quality of life is the heart of the problem with this story; indeed, in this particular case, it could very well affect the quantity of life for little Amelia Rivera. CHOP is telling her family that this hospital’s team has decided that she is less entitled to live than another possible recipient. Amelia has been denied the right to live because she is developmentally disabled and therefor cannot possibly enjoy a measure of quality of life that another might.

It’s tempting to think that this represents a slippery slope. Poor people would certainly seem to enjoy a more diminished quality of life than those with lots of money, for example. Do the poor get booted from the list? What about patients who suffer from depression? They can’t be enjoying life all that much, right? I imagine there’s a case to be made for a higher quality of life for attractive people, too. Do the homely among us deserve to live? If the head of a transplant team is a devoutly religious believer of whatever flavor, wouldn’t they believe that atheists and agnostics enjoy a lower quality of life?  Looking back, I just realized that every one of the above factors easily apply to myself. If the health industry universally followed the same rules as the Children’s Hospital of Philadelphia, I would be well and truly screwed.

The reality, however, is that none of these hypothetical factors are likely to keep anyone from receiving a life-saving transplant, with the possible exception of poverty. (Being poor gets you nothing, sorry.) When judging this mysterious idea of quality of life, it is usually those least equipped to defend their own happiness and their own sense of living an enriched life who find themselves in the crosshairs. No doctor is going to look me in the eye and say “Sorry, dude, but you’re broke, sad and ugly. No kidney for you.”

For people with developmental disabilities, especially children, the quality of the lives they live can be unknowable. But that’s not even be the point. What is the measuring stick by which that quality is determined? Do we break out our dusty old “Game of Life” board game from the closet and see who’s got the most money at the end, or the best job? Do even the most sympathetic among us apply some subtle measure of worth to those with developmental disabilities? I saw one autism advocate tweet that Amelia Rivera was being denied a transplant because “she’s not smart enough”, as if that even accurately or fairly describes developmental disability. We all have a great deal to learn, every one of us. We’re all bringing measuring sticks to the table, in some sense.

In the end, there is one person who knows exactly what Amelia’s quality of life might be, and that is Amelia Rivera herself. She’s not quite four years old, in the very early chapters of a life, and we can look at what that life is likely to involve and try to come to some conclusions. But those conclusions, based as they are on our own judgments and opinions about what make a life worth living, they mean exactly nothing, as does the judgment of a transplant doctor at CHOP. Amelia’s mother knows this; she is a powerful parent advocate whose work is going to mean the difference between life and death. If there’s anyone who is going to improve the quality of Amelia’s life, it’s her family. They’ll never give up.

As for the rest of us, the very best we can do is look at a beautiful child like Amelia Rivera, with all her challenges and in all her mystery, and appreciate how the life she lives is hers and hers alone. The quality of that life may be unmeasurable. In all the ways that matter, however, that is probably true of us all.