Okay, so I was all set to start my tenure here with nice aesthetics post. Then a news story came up that just happens to involve disability, ethics, and medicine. The first two are my beat, and the third is Dr. Saunders’s. About this I must write!
My son’s syndrome is so ridiculously rare that most people who have it live nowhere near more than one or two other people who have it. So we family members all friend each other on Facebook. And let me tell you – the Ridiculously Rare Syndrome community is seriously pissed off this week. It all started when the mom of a kid with a different Ridiculously Rare Syndrome (Wolf-Hirschhorn Syndrome) wrote a blog post claiming that the prestigious Children’s Hospital of Philadelphia (CHOP) rejected her child as a candidate for a kidney transplant because of her child’s mental retardation – even though the family planned to donate the kidney. Infuriated special needs parents have been signing a petition and peppering CHOP’s Facebook wall with complaints. (CHOP has replied to the Facebook campaign here.) The story has now hit the MSM.
Two things off the bat.
First, CHOP has a great reputation. I have a friend whose child had Down syndrome and was treated at CHOP. He was considered and rejected for a heart and lung transplant for entirely medical reasons – his cognitive disability was never a factor. So I found this story surprising, and am, frankly, not 100% sure it is true. On the other hand, in my dealings with the medical community who treat my son, I have come across more than my fair share of doctors who went rogue and said outrageous and completely inappropriate things about my child’s quality of life. I mean, really seriously shocking things. So maybe surprised, but not shocked. But I suspect that if this is true, this is one crazed doctor, and not CHOP.
Second, if this is story is as told, it is not just outrageous, it is insane. Because while the scarcity of organs and quality of life is an issue (that will be discussed forthwith), the family had offered to donate the organ. So the doctor is refusing to treat this girl not because she is taking an organ away from a more-abled person. It’s just that he doesn’t seem to want to treat a child with mental retardation. Since we are not in the habit of exposing our disabled on mountaintops, we generally don’t deny medical treatment to the disabled. Even treatment that requires intensive follow-up, as families indeed seem capable of administering the follow-up care required to the cognitively disabled who receive transplants. (I mean, come on, we’re already caring for a disabled person, which is not exactly a hands-off, easy-breezy affair.)
I do think there is an issue worth discussing, however, about allocating scarce organs to the cognitively disabled. If I were wearing my mom hat, I would say that if my son needed an organ to survive, I would rather 10,000 otherwise healthy kids go without so that my son could live. With my philosopher hat on, however, obviously I recognize that is not tenable policy. So what is the policy? Um, there is no coherent one.
This should not be decided catch-as-catch-can. Doctors are not, on the whole, an especially ethically informed bunch (Dr. Saunders is, as he is in so many cases, an exception). The ethical training they have received, where received, is minimal. So I don’t think they should be in a position of deciding which patient of theirs merits treatment ahead of which others.
I am sympathetic to the view that mental retardation is a factor in quality of life, and should perhaps be a factor. I am hesitant, however, to consider it a strong reason not to donate organs (so, not the primary factor). My main objection is a slippery slope argument. Suppose we have one kidney and two patients. All is equal between Patients A and B, except Patient A has an IQ of 100 and Patient B has an IQ of 120. Is it immediately obvious that Patient B should get the organ? I suspect most people would resist this. We do not generally consider intellectual ability when considering rights and the value of life. Starting to consider potential productivity of a transplant recipient leads down a path that starts to seem a little…eugenic. There are also some factors in quality of life on which my son comes out ahead of less disabled people – he is extremely happy, experiences far more pleasure than pain, is sociable, and makes those around him happy. With an exception for those who have progressive neurodevelopmental disorders, or are profoundly disabled, I think cognitive disability should be given less weight than other factors, such as medical benefit.
I’ll add that from my observation, what counts as “ethics training” for any profession, not just doctors, seems to be training on “how not to get sued or prosecuted” rather than on “what is right and wrong and how to decide.”
Again, this conclusion comes only from my informal observation, and perhaps I generalize too much.
That is consistent with my experience in ethics training from an engineering college. The message was on the importance of raising safety concerns through appropriate channels and documenting your efforts (right up to stepping outside the chain of command and blowing the whistle if necessary).
These processes should result in a higher degree of safety … but certainly the motivation was to keep yourself out of jail and successfully ward off lawsuits.
Interesting. I know little about professional ethics training. I should find out more about it.
I agree that the whole story sounds…odd. I’d kind of like to hear more about it, but there’s no use in looking anymore, because the Internet Community has decided what the Truth is.
Yeah, I am suspicious. But it’s an interesting issue, so I thought I’d use the story as a springboard.
Great post Rose. I’m not sure how much I have to add, except several +1s.
I know CHOP only by reputation, but its reputation is excellent. (The hospital where I’m on staff has something of a [mostly] friendly rivalry with it.) In our private conversations we’ve marveled at how incredible the difference between reputation and practice can be, but I would still find it surprising if this case represented an institutional decision on CHOP’s part.
As far as ethics goes, I know I had a class about in medical school, which for some reason I retained relatively well. (I also just happen to find the subject interesting.) I think many of my colleagues found the class one of those irritating requirements that was more to be endured than enjoyed.
I pretty much agree with everything you’ve written. I think the exceptions you mentioned for the profoundly retarded or those with progressive conditions are reasonable. It may be hard to construct a policy that clears up all gray areas, but generally speaking I think using cognitive ability or potential as a deciding factor when delivering care is a very dangerous precedent to set.
I have found many doctors’ understanding of informed consent wanting. I mean, they generally understand it’s something they ought to seek. But they seem to know little of the problems with getting it even under perfect conditions, much less compromised situations. Forget about other issues in bioethics.
The kidney from some of the reports, state it would be donated by a minor in the family.
Yeesh. Well, that certainly brings up informed consent issues. Maybe a post for another day.
Yes, I first came across this story in Disability Scoop and was immediately intrigued. I’m guessing/hoping (as you stated above) that this is an action of one crazed doctor, not CHOP. In fact, I believe the hospital is taking a second look at the case.
The whole situation does bring rise to a topic that is near and dear to me. I believe people in this country (including physicians) have been robbed of the opportunity to become comfortable and knowledgable about people who experience intellectual and developmental disabilities due to the disgusting practice of instatutionalization. There is a slow growing movement of educational efforts among public servants, but I’m not sure what education or specialty training (if any) is offered in the medical field. Just don’t get me started on services available to people who experience disability in rural communities!
Do you know of any stats on institutionalization? My experience with my son’s syndrome (almost always moderate to profound) is that there is only one kid I’ve ever heard of who was institutionalized. But it may be more common than I realize. Unless you’re talking about adults?
I am with you in being shocked at how much services vary. In my county, my kid (under three) receives 15 hours of therapies a week at our house (we’ve been offered more, but I need a break!) plus loaner equipment, all free. When he turns three, there are public preschools totally prepared to handle severe/profound kids. I know kids his age in rural areas who receive one therapy visit per month and have no option for schooling that is actually designed to meet their needs.
I remain surprised that I/DD is so infrequently a specialty among primary care providers.
To be clear, I’m talking about that I’ve only heard of one kid in the last 10 years or so who was institutionalized. Before that it was somewhat common, and 25, 30 years ago it was de rigeur.
One NICU doctor suggested institutionalization soon after we got the diagnosis. When I mention this to other parents, they are shocked – no one suggested it to them.
Rose, my experience with I/DD is with adults mostly so the history of institutionalization is what I was referring to above. I am somewhat proud to say the the west coast is considered progressive in I/DD services (there is always room for improvement and if it had not been this way in the beginning there would not be a need for de-institutionalization). In fact I believe Oregon (and please correct me if I am wrong) is the first state to successfully eliminate all of their institutions for folks with cognitive disabilities. Unfortunately, not all of states can say the same. I was speaking with someone from New Jersey a few months back and he informed me that there are 7 institutions in his state! How do you even fit 7 in such a small state!!
I suspect that services available for children and their families now are better then ever. I believe most people and their families receive services in their own home or a home like environment. Like I said there is always room for improvement though. I am not keen on the now popular mini-institutions known as group homes. I see (at least in my region) a move toward more individualized services. For the past 15 years or so I would say the focus on the west coast has been serving people who are coming out of large congregate settings. As those folks age service providers are now switching their focus to providing service to the younger folks who have never experience the dehumanization that comes from living in an institution.
An interesting conundrum though not an ethical question that strikes me as necessarily very difficult since I am of the opinion that there is an option C that has generally been given short shrift; eliminate the scarcity of transplant donations. This would be done by permitting the buying and selling (under strict regulation to prevent theft or coercion) of organs. Everything I’ve read on the subject suggests that the scarcity of transplants we suffer from and its associated Sophie’s choices conundrums is artificially caused.