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Subject:
From:
"Susan E. Burger" <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Wed, 17 Sep 2003 10:29:39 -0400
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Dear all:

I come from a research background initially and during my doctoral program
we actually had a course on ethics for nutritional research.  We had huge
discussions about the ethics of different research scenarios, particularly
with regard to testing untried nutritional interventions and withholding of
potentially beneficial interventions.  One of the key things that I
remember from these discussions was that there is often direct conflict
when weighing different ethical aspects.  I reiterate my frustration with
what seems to me to be a conflict between item #23 as interpreted by some
to mean you must always send a report to health care practitioners versus
you must obtain consent to share information with health care practitioners
and the HIPPA forms that I have looed out that include the right of refusal
to share information without being denied treatment.

Are there forms out there that do not include this phrase and are these
forms in line with HIPPA?  What am I supposed to say to the three clients
that I've seen who wanted to limit the information that I could share with
pediatricians (and which has no bearing on the pediatric care)?  Must I go
back to them and say, well now I'm obligated to send a report to the
pediatrician and you must sign it or I can never even do a phone consult
with you again?

In my research background, it was considered highly unethical to pressure
someone to consent to something that they are not comfortable with -
including sharing information.  It seems to me that anyone who is in
desparate need of care would experience a considerable amount of pressure
to sign even if they were really uncomfortable having that information
shared.  While I can certainly see the case in requiring professionals to
report instances of child endangerment, one can also make the case for the
right to privacy of the client under other circumstances.

No one, so far, has addressed this very real conflict of ethics involved
here. All I have seen are the various interpretations of item #23.

I'm also wondering whether or not I must go back and send information to
every last health care practitioner about the straightforward cases that I
have seen in the past.

FINALLY, the three out of four cases where I have seen infants falter in
growth significantly have been because of the pediatrician deciding to
limit supplementation despite clear indications that the baby was not
transferring milk.

In one case, the client was Medicaid, the baby was alert, but not gaining
well and the pediatrician let the infant go an entire month without another
weight check.  By the time I saw this two month old, she was only 4 ounces
above birth weight and fit the clinical profile of marasmus (which I have
seen repeatedly in developing countries in my 20 years of international
nutrition work).  In this case, I introduced myself, wrote a very clinical
case report to the pediatrician with just the facts about milk transfer,
and mentioned that we ran weekly support groups where mothers can weigh
their babies and get helpful tips in situations where weight gain is slow.

In another case while I was in training, the baby was two weeks old, lost
20% from birth weight, had only taken about 5 ounces a day, transferred 0.2
ounces of breast milk after an hour of trying every means possible: breast,
cup, finger feeding, bottle to feed the baby - promptly threw up.  The
lactation consultant called the pediatrician, who insisted the baby was
just fine.  The baby went home, had two seizures and the parents only
brought the baby to the hospital in the morning.  What obligations do we
have in this type of circumstance?

This does not at all seem cut and dry to me.

Still even more confused about Item #23 and HIPPA than I was before.

Sincerly

Susan E. Burger, PhD, MHS, IBCLC

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