Mother Karen Corby has become national news after starting a petition on Change.org to demand a heart transplant for her 23-year-old son, Paul, who has left ventricular noncompaction, a condition that causes his heart to pump poorly. It’s severe enough that he needs a transplant to save his life, but he was denied entry onto the transplant list at the University of Pennsylvania because he’s autistic.
In addition to autism, Paul also has a mood disorder, although the nature of the disorder hasn’t been specified in the media. Since “mood disorder” is often code for “bipolar disorder,” it’s possible that’s the diagnosis. He is in treatment for both his conditions; his mother claims he takes almost 20 medications daily and that his treatment is very successful. In other words, he has disabilities that are stable and well-managed, in addition to his ultimately terminal heart condition.
Karen argues that the denial is a case of blatant disability discrimination, and one that is turning autism into a death sentence for her son. The case is attracting a lot of commentary and discussion because it hits on a lot of important ethical issues, including topics that may make some people very uncomfortable. In a world with limited organs available for transplant, transplant committees make harsh decisions on a regular basis about who to put on the list, and who to leave off.
One obvious consideration is whether a patient can survive the surgery, along with the followup. Once you’ve received a donor heart, you need to manage it for the rest of your life. This requires anti-rejection drugs along with regular medical followups to monitor your health. Receiving an organ is a major life commitment, in addition to being something that can save your life, and transplant teams want to make sure that organs end up in recipients who are most likely to have successful transplant outcomes. This should be a bias-free process focused on medical issues, and may integrate some lifestyle concerns when they're relevant. For example, a homeless recipient would have a harder time keeping up with aftercare and might need support from social services to stabilize her life before getting an organ.
While the University of Pennsylvania hasn’t commented on the specifics of the case due to concerns about patient privacy, Karen says the surgeon wrote that: “I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.” She claims the medical team fixated on a doll her son carries for comfort rather than other specifics of his case, using this as evidence that they focused more on the autism than on Paul as a whole patient.
Corby also says the surgeon was concerned that Paul couldn’t name all of his medications; from the surgeon’s point of view, this is one way to assess cognitive function and a patient’s capacity for self-care. For patients taking numerous medications, though, it’s actually not uncommon to not be able to list all the medications being prescribed, their uses, and their dosage schedule.
I’d be curious to know more about Paul’s medication management plan, however, before condemning the surgeon as cold-hearted for being concerned about this, because polypharmacy is a significant issue, especially when you consider the fact that Paul will be taking more medications after the transplant.
And, as the surgeon says, steroids (needed to prevent rejection) can radically alter behavior, a significant concern in a patient with a history of outbursts. This doesn't mean Paul shouldn't receive a transplant, but it does mean it should be considered as a factor in how to manage his case. The surgeon doesn't want Paul to die or experience severe complications because of medication interactions and it's clear that a transplant team would need to think about the medication issue before moving forward with a procedure.
As for the concerns about the complexity of the process and the multiple procedures, these are clearly issues any patient would experience, but in Paul's case the surgeon may be attempting to imply that Paul wouldn't be able to cope with them because he's autistic. Again, without any information about Paul, there's no way to know that. And there's no indicator in the limited information available that Paul was screened appropriately -- if he's in regular psychiatric care, for example, was his psychiatrist consulted? What about his regular physician? Or Paul himself? Does the surgeon think autistic patients inherently can't handle complex medical procedures?
And when the surgeon says that autism is a contraindication for transplant, well. That sounds rather suspicious.
Outside experts on transplants and medical ethics say cases like Paul’s raise concerns because they’d be afraid the patient wouldn’t be able to keep up with the medical maintenance required to care for a donor organ; this is rooted in the belief that autism in general automatically means a patient isn't capable of self-care, but there are legitimate concerns for some autistic patients that cannot be ignored. Again, this doesn't mean they don't deserve organs, but it means that discussions about transplant need to include a mechanism for handling such patients.
From the surgeon’s perspective, there are worries about whether Paul can manage his condition, and whether Paul can report symptoms that might be indicative of complications. We don’t know enough about Paul to know the answers to these questions, and they are important questions, albeit tough ones.
He may work with an aide or personal care attendant who helps him with his medications, appointments, and other tasks of daily living. That means that Paul would be capable of managing his new heart after transplant, and could have a very successful outcome; the assumption that someone who needs assistance to live doesn’t deserve to live is deeply troubling. If he doesn't have an aide, maybe he needs one and this should be structured into his surgical plan, and there's nothing wrong with that either.
There are lots of different ways for people to communicate, and they’re often left out of conversations like this. As seen just last week when an autistic teen was told to turn off the iPad she uses for communication, some autistic people rely on communication boards and other nonverbal techniques to get information across; and they’re denied the right to communicate by people who don’t understand them. Paul might be perfectly capable of using a communication application to interact with his medical team, allying concerns about whether he’d be able to express concerns about symptoms and complications.
With limited information about his case, it’s hard to say what, exactly, is going on here, but it’s not the first or the last time that someone with a developmental, intellectual, or cognitive disability has been denied a transplant organ on the apparent basis of the disability itself, and for no other reason. This despite the fact that having a disability does not preclude the ability to manage a donor organ, although some patients may need assistance; it seems likely this is the case with Paul Corby, based on the information made available. That suggests to me that disabled lives aren’t valuable, don’t have meaning, and aren’t worth saving; that in the process of triaging transplant organs, medical teams feel comfortable taking people with disabilities out of the running because our lives aren’t as important.
Obviously, decisions about donor lists are heartbreaking to make, with a critical shortage of organs and swelling numbers of patients who need them. Denying someone a transplant cannot be pleasant, nor can informing the patient and the family of the decision. Disability inevitably needs to be weighed as a factor in these decisions because it can complicate a transplant, but disability alone shouldn’t be a factor in whether a patient should receive an organ.
The fact that we can transplant organs at all is amazing and wonderful and has opened up so many opportunities to people who would have otherwise died. To deny some that opportunity simply because they are disabled is appalling – and says a lot about the humanity of the people in charge of such decisions.
The Corby family is, of course, welcome to seek a second opinion on the decision to deny Paul a new heart. One can hope that’s what they’re doing, because a rejection at one facility doesn’t mean a unilateral rejection across the board; Paul could be listed elsewhere and receive a new heart through a different facility.
The specifics of Paul’s case aside, though, important larger issues still stand: What is the value of an autistic life in the US medical system? What kinds of attitudes factored into the transplant committee’s decision, and how did thinking about autism shape their deliberations?