Some while back, a PA judge ordered UNOS/OPTN (the national organ transplantation organization-they maintain the waiting lists, and the criteria for where you get to be on the list) to place a 10 year old girl on the adult transplant list as well as the pediatric list.  (Normally the pedi list is separate, and you need to be 12 or older to get on the adult list).  I don’t know the details of the case, but there are infinity reasons why I think this is a Bad Idea.   Here is the ruleset for thoracic organs, all 45 pages of it.  The lung ruleset is the most complex thing I’ve seen in a while.  A lot of people, including a large number of regular citizens and transplantees, as well as people awaiting transplants, worked hard to write those.  And a PA judge figures he’s smarter than them.  As I said, I don’t know all the facts of the case, but I promise you this will unleash a bunch of suits requesting the same type of relief from the rules.  I hope he enjoys his newfound career: transplant judge.  

Organ donation and transplant is an incredibly emotional subject for all who get near it.  I’ve been an organ donor since I’ve known what it meant, which was in college.  When I got my first organ donor card, I made my mother and my fiancee (later wife) sign it, so they knew I was serious.  I recommend everyone else do the same, absent real spiritual (read: religious) convictions that stand in your way.  Having been on the organ donor side of the care equation, I promise you that if you’ve heard anything implying that health care professionals do less for people who are organ donors so we can get the organs, I personally guarantee you that is bullshit. Let me tell you my personal organ donation story.  No, I haven’t donated an organ, but I was a resident in one of the busiest knife-and-gun club hospitals in Boston: The Boston City Hospital, first in general surgery (only 1 year; I am not a surgeon, nor do I play one on TV), then in emergency medicine.  Both residencies involved the occasional organ donation situation, such that I saw about 3 per year for the 4 years of residency.  I’m going to talk about just one, from my second year of residency, when I was in the Surgical ICU (emergency physicians rotate through a lot of ICU time; at City our contention was that we got more ICU time than anyone except the ICU fellows). The patient was a young woman, in her 20s at the time.  She’d been involved in a high speed motor vehicle collision, as a passenger.  I don’t believe she was wearing a seatbelt, but at this point, I don’t honestly recall.  I heard about her, as I often did, not from my supervising resident, (a surgeon) not because he didn’t like me or wasn’t interested, but because, I believe, he knew what this call was going to mean and  he didn’t much like it-but from my senior resident in emergency medicine-the man who would be chief resident the following year. He called, explained briefly that I was to take the patient to the ICU, but she wasn’t expected to live long, and would potentially be an organ donor, and I would need to shepherd her through that process.  Now, I wouldn’t be alone, he assured me; I’d have lots of support from the New England Organ Bank (NEOB), but in the meantime, would I come down and fetch her? (a physician was required to accompany all patients on the Danger List (i.e. critical patients))  And oh, by the way, I would need to sew up a laceration on her head; he’d show me when I got there. So down I go, into Trauma 1 (at the time, BCH had 2 trauma rooms; they now have 3). On my arrival, I walked into trauma 1, where I found a 22 year old female, unconscious, unresponsive, with a long laceration vertically oriented on her forehead.  “Take a good look at that lac”, says the senior resident, “and tell me what you see”.  So I took a good look, and it was easy to see that the laceration went right down through the scalp, through the skull, and there, at the base of the “laceration”, was the brain, admittedly still covered by meninges (the fibrous fascia covering the brain). For those of you not versed in medicine, this is Not Good. Basically, what it meant was that this unfortunate young woman had had a mighty whack to the head, enough to cause this injury, and as a result, almost certainly an equally mighty whack to the brain underneath it.  The brain doesn’t react well to being whacked, and her life expectancy was, as a result of only this injury, was poor.  And it appeared that this was her only injury; the rest of her was more or less untouched. I closed the laceration, had a look at the labs which were back by then (all normal), the routine xrays (equally normal, except the head CT scan), and her head CT, which showed that she had so much swelling of her brain that the normal wrinkled appearance of her brain had disappeared; the swelling had squished her brain sufficiently that all the normal gyri and sulci (the medical name for the grooves and ridges which make up the normal appearance of the brain) had been squashed together so you couldn’t see them any longer.  Again, not usually something you can fix; note that this woman already had vented her skull somewhat (the laceration meant that there was a big crack in her skull, which allowed there to be a bit more swelling than would normally have been possible without killing her immediately. Bottom line: she was dead. We say “brain dead” like it’s something different from just plain dead. It’s not. Dead is dead, no matter how we decide. This young lady was dead; the only reason she wasn’t cooling on a slab was that her heart hadn’t gotten the memo, and we were working very hard to block the memo from arriving.

So up to the ICU we went. We ended up having a chat with her family; they were entirely on board with organ donation, and were more or less prepared to sign and have us go right then; they understood clearly what the CT scan findings and our explanation of them meant (the neurosurgeon involved had made it crystal clear that he had no role in this woman’s care, much as he would have liked to). We had to wait the mandatory time, though, to make a clear determination of brain death according to the rules. Let’s be clear: I knew, the neurosurgeon knew, hell, the medical student had there been one involved would have known that this lady was done, finished, pau, kaput, thirty, game over. The nurses knew more than we did, having been through this more than a few times (the BCH ICU nurses were and are a special breed of nurse, smart, experienced, and good enough to keep the doctors from doing stupid things more often than not; along with the ED nurses I owe them a lot). Everyone was on the same page here, and yet we stalled until we could dot the i’s and cross the t’s. We had to do at least two brain flow scans showing no flow, and check brainstem reflexes (very primitive reflexes whose absence indicates that no part of the brain survives;if they are gone, everything in the brain above them is also gone) at least 6 hours apart. So we did these things; unsurprisingly, she was still dead at the end of that rigmarole, and went to the OR for harvest (a truly unfortunate word, but not inaccurate) of her organs. She donated virtually everything that can be donated, and took a little of the edge off the tragedy. (It’s always tempting to say that organ donations turn the tragedy into something good. This is of course nonsense; it’s still a tragedy, just a tragedy somewhat ablated by the happy outcomes experienced by the organ recipients).

So. We all knew this woman was dead, and yet we went through all that to prove it. Why?

Because people, specifically people not doctors, need to have faith in the process. They need to know that doctors are not chomping at the bit to let their loved ones die so we can get at their organs. Note, for instance, that the transplant surgeons have not one thing to do with this process, ever. They help work on the criteria for organ donation, but not the criteria for death, at least not for individuals. That is up to the treating physicians. Usually the treating physicians are assisted by a protocol written by the hospital with ample input from the hospital’s legal team. Doctors, more than most people, I believe, hate to lose. When a young person dies, we have lost hard. When we give up and decide that someone is dead in that age group, it is because we are stone cold certain that we’ve already lost, usually without even starting. The one body part we can’t really rescue from damage is the brain. So make no mistake, brain dead is just another way of saying plain old dead.

So how about that judge? How does he enter into it? Well, I started out with him because he decided he knows better than the people who wrote the initial rules. Perhaps he does; perhaps the case in question deserved an exception when others did not; I don’t know what the specific facts were. Perhaps he finds the equation used by the people who wrote the original guidelines tipped too far toward saving adults and not enough towards saving children. I don’t truly know what he was thinking; I personally believe that one of the purposes of having organ donation criteria, and people who administer them, is to keep the process from becoming the sideshow it will now become because this judge decided the rules should be different, either in general or for this particular child. I think that’s nonsense. If the rules are broken in the judge’s opinion, direct the responsible committees to review the rules in light of the improved understanding the judge thinks he has, and see if they can come up with a better solution in this case, or at least a different one. The issue is that, unlike many resources, the resource in this instance-donated organs-is very, very restricted, and the need is very very great. This is a situation ripe for abuse, especially for people who have money, or can convince a lawyer that there’s money in it for them. The judge played into their hands, and I think he will regret it. I’m not saying “Leave this to us doctors; we know best”. I’m not saying that because I like to think I’m not an idiot. Doctors don’t know best any more than lawyers or judges know best. But a thoughtful group of people, including some doctors, some lawyers, some transplant recipients, some organ donors, and some just plain folks, thought long and hard about what the rules should be. I’m fine if a judge says “Think about this a little more, because I don’t think it’s done yet and here’s why”, but to think he can, in the heat of a trial, come up with a better decision than is already in place is, I think, the height of hubris. It’s bad policy, bad law, and in general a bad idea. He, and we all, will live to regret it, except for the people who don’t because they cannot get an organ, because the people who would donate no longer trust the system of allocating them, because this judge has made a mockery of it. Yay. Only not.