From: geb@dsl.pitt.edu (gordon e. banks)
Newsgroups: sci.med
Subject: Re: spina bifida information needed, please!
Date: 26 Aug 92 18:40:15 GMT
Organization: Decision Systems Laboratory, Univ. of Pittsburgh, PA.

In article <1992Aug24.055121.5009@news.eng.convex.com> cash@convex.com (Peter Cash) writes:

>Good questions all. But remember, my point wasn't that spina bifida
>presents a cheerful prospect (nor was it the point of this study): my point
>was that a positive outcome is _possible_, and not even entirely
>improbable.
>
Peter, you reacted very emotionally to my post and clearly missed
that I said a positive outcome was possible.  I recommended an
assessment by a pediatric neurologist before proceeding aggressively
in a neonate with complications (the poster didn't say, but
complications in such an infant are almost always meningitis.
The long-term outcome of neonatal meningitis is dismal, even in neonates
who don't have spina bifida).  I suspect you have very personal
reasons for why you reacted that way, and so I was less offended
by your charges that I was ignorant and the my institution was
bad than I might have been.

>It may be that you didn't express yourself as clearly as you believe in
>your earlier posting. You did indeed close with a recommendation to have
>such an assessment made--but the rest of your article gave a different
>picture. I don't think I'm the only one who got the impression that your
>view on spina bifida was that saving the lives of children born with this
>defect is a bad idea--that at best it results in a lifetime of
>institutionalization in a warehouse for human vegetables. It is now

No, I apparently didn't communicate very well.  I apologize for
that.  Certainly I didn't mean to say that any child born with
spina bifida should be left to die automatically.  What I wanted
to communicate was that each one needs an individual assessment
before undergoing $100,000 worth of surgery that may only result
in a vegetative patient or worse.  It may surprise you to know
that in most cases, this is not being done.  These infants are
automatically put into the surgical pipeline with no thought to
the prognosis for a good result.  And particularly in the case
present, with lots of complications, someone should step back,
take a look, and decide if it is really a good idea to pursue this
any further.

>well as worse cases. In your first posting, it did not seem as though you
>believed this. (Could it be that you meet mainly the very worst cases? This
>can be an occupational hazard in your profession.)
>
No, I do see the successful cases too.  But it is true that we
are probably the ones who see the failures more than anyone else.

>I don't know about this. You're a neurologist, and I'm quite certain that
>you know a lot more about the human brain and its functioning than I do.
>Yet, if I had a neonate with spina bifida and you made a negative
>assessment of the advisability of surgical procedures, would I accept that
>assessment? I don't know. I'd want to ask you some questions like, "How
>certain is the outcome of such an 'assessment' on a newborn? Can you speak
>with absolute confidence about the potential of this child, and about the
>possibilities that the future holds for it? Can you really speak with
>enough confidence to make a decision on whether or not the child's life
>should be saved? Can you make this assessment so early in life, _before_ a
>shunt has been installed, or any corrective surgery has been done?"
>
No, there is no such confidence in medicine.  Although I am not a
pediatric neurologist and wouldn't be qualified to make such an
assessment, I would merely present my opinion as to the prognosis.
It isn't the doctor's job to decide what to do, but to paint the
picture of the possibilities for the family.  SOme families, for
religious reasons, will insist on trying to save the child regardless
of the prognosis.  I wouldn't try to stop them unless I thought
it was 100% hopeless in which case I wouldn't offer them treatment
options that I didn't feel would benefit the child.  But rarely
is the downside of keeping the child alive explained to the family.
Usually the family is told the child will die without the operation
and of course, they sign.  Only later do they find out that they
have merely prolonged the child's suffering in the cases of bad
results.  My experience is the opposite of your wife's.  Perhaps
it is the aggressive environment I practice in.  Here the tendancy
is to do everything for neonates regardless of expense and
prognosis (well, almost).  


-- 
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Gordon Banks  N3JXP      | "Skepticism is the chastity of the intellect, and
geb@cadre.dsl.pitt.edu   |  it is shameful to surrender it too soon." 
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