Wednesday, October 20, 2004
Notes from the CNS: The child with two faces
As previously reported, I've been in San Francisco for the last few days attending the annual meeting of the Congress of Neurological Surgeons. One of my duties pleasures is to break bread with neurosurgeons who are our customers or scientific collaborators. Last night I had dinner with two chief residents from an important West Coast hospital. Since neurosurgery has the longest residency in medicine -- something like nine years -- these were experienced surgeons notwithstanding their status.
As usually happens over dinner with surgeons, the conversation turned to surgery very quickly. This might be unappetizing for the average diner, but it is de rigeur shop talk in the medical device industry (and, I should add, a stark improvement over the dinner conversation at my last company, which sold products to pathologists). We ended up talking about conjoined twins cases, which are very challenging for the neurosurgeons, garner enormous publicity for the hospital in an age when hospitals love publicity, and give medical device companies an opportunity to showcase their technology (our company builds and usually donates custom "cranial stabilization systems" for fixing the heads of these poor children absolutely motionless for these long operations).
Not surprisingly, these cases can pose tremendous ethical questions, particularly when the survival of one of the twins is problematic, or even impossible. The most difficult such case that these surgeons knew about involved a subject that rocked our bedrock assumptions about the essence of individuality. This patient -- or patients -- had one body and one cranium, but two apparently functioning faces and roughly 1 1/2 brains. The second face included two eyes, a nose and a mouth, all of which functioned. The second mouth drained into an esophagous, which joined with the "primary" esophagous at a "Y" junction in the common throat. It is not clear whether the second face, with its partial brain, had a separate consciousness.
Now assume that without an intervention the patient or patients -- whether one or two -- will die. What to do?
We are ill-equipped linguistically even to discuss such a question. Start with the language we use. Is this "a patient" or "patients"? "A child," or "twins"? If you call the procedure a "separation" of "twins" you have assumed one conclusion, and if you call it a "reconstruction" of a deformed baby you have assumed the opposite conclusion. We have no vocabulary that does not assume the conclusion, but the conclusion is critical, perhaps, to deciding whether it is permissible to attempt a "rescue" of that part of the patient(s) with the primary face and intact brain. If the procedure is merely plastic surgery with a neuro twist, there is no question that you must rescue the child. If the procedure calls for homicide -- the affirmative termination of a dependant individual in order to rescue the complete individual -- you might reach a very different conclusion.
As it turned out, the patient(s) were in the care of a hospital with religious roots, and the hospital's ethics review board would not permit its attending surgeons to perform the operation that would have rescued the complete child (see, by the way, how I have to torture the language even here to avoid assuming a conclusion, and you might well argue that I have failed). The patient(s) died.
One of the surgeons present was appalled that "religious" considerations played a role in this decision (the other surgeon remained curiously silent). My unspoken response -- unspoken because there is never a payoff in arguing religion with a customer -- was to wonder how you might decide this question without resorting to religion, or at least faith?
We live in interesting times.
As usually happens over dinner with surgeons, the conversation turned to surgery very quickly. This might be unappetizing for the average diner, but it is de rigeur shop talk in the medical device industry (and, I should add, a stark improvement over the dinner conversation at my last company, which sold products to pathologists). We ended up talking about conjoined twins cases, which are very challenging for the neurosurgeons, garner enormous publicity for the hospital in an age when hospitals love publicity, and give medical device companies an opportunity to showcase their technology (our company builds and usually donates custom "cranial stabilization systems" for fixing the heads of these poor children absolutely motionless for these long operations).
Not surprisingly, these cases can pose tremendous ethical questions, particularly when the survival of one of the twins is problematic, or even impossible. The most difficult such case that these surgeons knew about involved a subject that rocked our bedrock assumptions about the essence of individuality. This patient -- or patients -- had one body and one cranium, but two apparently functioning faces and roughly 1 1/2 brains. The second face included two eyes, a nose and a mouth, all of which functioned. The second mouth drained into an esophagous, which joined with the "primary" esophagous at a "Y" junction in the common throat. It is not clear whether the second face, with its partial brain, had a separate consciousness.
Now assume that without an intervention the patient or patients -- whether one or two -- will die. What to do?
We are ill-equipped linguistically even to discuss such a question. Start with the language we use. Is this "a patient" or "patients"? "A child," or "twins"? If you call the procedure a "separation" of "twins" you have assumed one conclusion, and if you call it a "reconstruction" of a deformed baby you have assumed the opposite conclusion. We have no vocabulary that does not assume the conclusion, but the conclusion is critical, perhaps, to deciding whether it is permissible to attempt a "rescue" of that part of the patient(s) with the primary face and intact brain. If the procedure is merely plastic surgery with a neuro twist, there is no question that you must rescue the child. If the procedure calls for homicide -- the affirmative termination of a dependant individual in order to rescue the complete individual -- you might reach a very different conclusion.
As it turned out, the patient(s) were in the care of a hospital with religious roots, and the hospital's ethics review board would not permit its attending surgeons to perform the operation that would have rescued the complete child (see, by the way, how I have to torture the language even here to avoid assuming a conclusion, and you might well argue that I have failed). The patient(s) died.
One of the surgeons present was appalled that "religious" considerations played a role in this decision (the other surgeon remained curiously silent). My unspoken response -- unspoken because there is never a payoff in arguing religion with a customer -- was to wonder how you might decide this question without resorting to religion, or at least faith?
We live in interesting times.
2 Comments:
By 
Solomon, at
Wed Oct 20, 10:14:00 PM:
By 
, at
Thu Oct 21, 06:58:00 AM:
The case you describe feels more about the egos of the surgeons than a merciful outcome for the child/children. Had that part of the patient(s) with the primary face and intact brain survived surgery, how much suffering would still be in store, and what would be the quality of life?
Sissy Willis
http://sisu.typepad.com
