Popehat has a more thoughtful discussion of the lung transplant waiting list controversy than I've seen anywhere else--not so much the initial post as the comments. Because the original post raised the issue of what unlucky person on the transplant list would die so that Sarah Murnaghan might get her new lungs, the talk naturally turned to the old "trolley car" ethical dilemma in which someone is asked to choose whether to divert a runaway car into a single person in order to save five people in its original path.
From my limited reading on the subject of transplants in the last week, I gather that the judge's order did not catapult Murnaghan to the top of the lung transplant list. Instead, it made her eligible to be considered for a place somewhere on the list, taking into account everything about her disease and chances for survival, instead of being automatically placed below all adults on the list. I gather also that far fewer people die while waiting for organs under the current system, which considers urgency, than did under the old system, which was closer to first-come-first-served. It's not at all clear, therefore, that by being bumped up the list this little girl saved her own life at the expense of someone else's. The most you can say is that her increased priority meant that others will wait longer. If the list is ordered properly, most (if not all) of those others won't wait so much longer that they'll run out of time.
I was surprised to learn that lung transplants are even a reasonable option for cystic fibrosis patients. Obviously the transplant doesn't cure the disease, which is genetic and affects the entire body, but the worst symptoms typically don't come back to affect the new lungs. Although the CF patient still will suffer the disease's effects on the intestines and the pancreas, those are less likely to kill at an early age. In addition, while the new lungs themselves will not behave like CF lungs, the patient will be at risk for infection because of immunosuppression. That's a special problem for CF patients, who often have chronic lung infections, the seeds of which can be lurking elsewhere in the respiratory system, such as in the sinuses. Teenagers also have their own special post-transplant problems, because the rebellious years are not well suited for life on a strict medical regimen.
Lung transplants are a fairly new option for CF sufferers. The one-year survival rate is about 80%, while the 5-year survival rate is about 50%. For comparison, the five-year survival rate for kidney transplants is 90%.
When I was younger, children with CF weren't expected to make it to puberty. These days, with improved treatments, the life expectancy has increased to about 37 years.
The increase in medical and engineering capacities is one of the few excuses the modern age has for itself. :)
ReplyDeleteBut it is a hell of an excuse.
I have to say that I'm never going to be a big fan of splashy, feelgood exceptions to rules. It's more an aesthetic than anything else, but it's also something I feel in my gut is right. I can think of justifications for it, but won't go into them here.
ReplyDeleteYes, it's great that this one girl got to be the lone exception made. What does that say to all the others whose stories will never be publicized and politicized? Does this very public exception make their lot easier to bear?
I doubt it.
Sometimes I think we'll never be happy until every rule is infinitely bendable. I'm reminded of something a very young 2nd Lieutenant once said when asked why he chose the Marines over the other services.
Every service has rules. Even the best of them them are often hard to bear, but it's even harder when they're enforced capriciously. If I'm going to voluntarily restrict my own freedoms, I'd like to know that the organization I'm working for takes those rules seriously.
He said it better, but that's the general gist of it.
I guess the question is whether it would make sense to eliminate the current rule that puts all pediatric patients at the back of the line, and instead incorporate their size/weight limitations into the formula doctors use to order the current waiting list, which already takes into account a lot of factors like severity of disease and complicating factors (such as size and age) that could make recovery more difficult.
ReplyDeleteI was getting the impression from lots of posts and articles that this was a simple question of jumping the line in favor of a photogenic individual, but I no longer think that's accurate.
I was getting the impression from lots of posts and articles that this was a simple question of jumping the line in favor of a photogenic individual, but I no longer think that's accurate.
ReplyDeleteIt never was accurate. The girl had been at the head of her own, pediatric, list for some time. She was ineligible for the adult list under the existing rules because she was too young. The technology extant at the time the rules were written didn't allow adult lungs to be transplanted into children with any serious hope of success--the lungs likely would have been wasted.
Too many doctors today were saying that technological factor no longer obtained, and they could perform such a transplant today with no trouble. Based on that, the judge's ruling did not jump the girl to the head of the adult list, it just required the relevant transplant board to consider her case in conjunction with the adult cases and without considering her age. She went into the list based on her condition.
Interestingly, there has been no publicity that I've seen that talked about adult lung transplants into adults contemporaneously on that list. I've been, then, unable to discern whether she was placed preferentially near/at the head of the list or whether her condition put her near enough to the head that the transplant happened so soon after her entry on it.
Eric Hines