How is a newborn at the extreme of viability resuscitated
Neonatal Resuscitation: What Makes the Gray Zone Gray?
thank you very much it's it's great to
be here great to be in Seattle we came
out a day early because people said the
hiking was great so yesterday we decided
to do a hike up to Mount Pilchuck which
was in the Cascades and everybody said
you know the views are fabulous and so
he hiked up the 2,200 feet and could
barely see the photographs of the views
we're in the little cabin at the top so
thanks for scheduling this during the
good season here in your in Seattle
actually if it was sunny I'd feel a
little cheated I mean false advertising
like them he want to feel the gloom when
we planned this panel I offered to give
a talk that is actually a little
different than the one I'm about to give
and actually after watching norms
experience with the slides i'm glad i
did because the talk i'm going to give
has no slides i was going to show the
empiric slides that are in your handouts
about different ways of measuring
outcomes for tiny preemies preemies with
congenital anomalies and i was going to
show how empiric data could be used to
define grey zones along different
quantitative axes and how we could look
at a grey zone as a measure of survival
rates or gray zone as a measure of rates
of disability among survivors or do
cost-effectiveness analysis to determine
where the gray zone is and measure it in
dollars per quality-adjusted life here i
was going to show how advances in
neonatology or shifts and cultural
attitudes like the ones norm was talking
about led to shifts in gray zones at
least in some cases but not in others
and have those cool data from all those
surveys that twenty-two percent of
doctors think this and thirty-eight
percent of doctors think that
there's differences between countries
and there's differences within countries
and you get different answers from
different ethics committees and sort of
map out in a descriptive almost
epidemiologic way where all these
differences lie but I came to see that
these sorts of arguments define gray
zones within a certain paradigm within a
way of thinking about what a graze own
is and they work to the extent that they
work only when everybody agrees on the
parameters and the methods by which you
make those quantitative assessments and
within the paradigm people may disagree
about the threshold where to set the bar
does it have to be below fifty percent
survival or thirty percent or ten
percent does it have to be higher
percent of kids with disability or some
measure of disability that counts as
severe but you have to agree on the
criteria before you can agree on the
conclusion and I'd still be happy to
discuss those issues in the discussion
period and i hope the sponsors aren't
too upset that i don't give the talk i
planned i also realized that i set
objectives based on that talk and i'll
get bad grades from you also give you
the answers participants will be able to
compare international differences
they're different japan resuscitates
more anglo-saxons in the middle europe
the least
quantitative quantitate the relevant
relevant relative importance of survival
disability and cost they're all
important and now I'm going to suggest
ways in which we might operationalize
the grace and I changed the discussion
because of a couple of recent cases that
I've had the opportunity to participate
in discussions about one a clinical case
that came to an ethics committee and one
more a policy case that I'm sure you'll
recognize when I get to it and these got
me thinking more about the conceptual
issues surrounding the gray zone and I
think the discussions are interrelated I
hope you see that to the case they got
me thinking about this was a case that I
presented to the group of neonatologists
at Children's Mercy in Kansas City and
I'm working on a paper about it was a
case of a baby with trisomy 18 who had a
big VSD and needed surgery for the heart
and medical management had been tried
for his heart failure and it failed baby
was going into worsening congestive
heart failure in the operation to fix
the VSD everybody agreed was relatively
routine and straightforward the parents
had gotten the diagnosis of trisomy 18
prenatally and it had chosen to continue
the pregnancy not apparently out of any
deeper identified religious beliefs they
said it wasn't based on their religious
beliefs but more out of an intuitive
sense that life was good and babies
lives were good and this was their baby
and they wanted everything done to save
their rabies life they loved her in
spite of her limitations so I asked the
group of neonatologists with the heart
surgery to fix the VSD ought to be
offered to this family and some of the
doctors said immediately dramatically
and unambiguously it should not be
offered they seemed quite sure of
themselves even a little bit strident
and they frame their arguments in terms
of moral principles and moral absolutes
it would be against the baby's best
interests they said surgery would only
be for the parents
not for the baby it would be prolonging
dying it would be a waste of societal
resources all those parameters that we
use to define gray zones it would
violate their professional integrity
somebody said this is not what I went
into medicine to do now we know and they
knew that many any neonatologist and
Surgeons many of their professional
colleagues would offer the surgery with
this very group we'd done a recent
journal club where we looked at a survey
of neonatologists who said halfway off
the surgery half wouldn't so they knew
there was disagreement but they still
felt strongly about their own opinions
in fact other doctors in the room said
that they would offer the surgery and
interestingly this group was a little
more apologetic they said yeah I I'd
offer it I wouldn't I wouldn't feel good
about it it wouldn't really bother me if
the parents chose surgery I mean in the
end it's their decision Who am I they
asked to judge so the group was split
almost right down the middle half would
half wouldn't the very definition of a
grey zone we could have taken a vote
thumbs up or thumbs down for this poor
little baby and somebody would have won
five to four I was less interested in
the outcome than I was in the structure
of the arguments on each side the people
who are against the surgery were much
more passionate and principled they
seemed to see themselves as courageous
in their refusal to offer the surgery
the people who were for the surgery were
the opposite they did not have a proud
principal to extol but another way their
principal was to have no principal to
have no moral conviction about what was
right or wrong to be profoundly
uncertain about their right to have an
opinion about what was right and it
struck me that this is often the moral
structure of gray zone arguments
oops more accurately there are two kinds
of gray zone arguments we mean two
different things when we talk about gray
zones one might be called a kind of
personal Gray's oh and the other might
be called a cultural or political gray
zone for the personal ones we don't
really care so much what the decision
symbolizes personal gray zone decisions
are important for the people directly
involved particularly the parents but
also the doctors and nurses but not
beyond that in most clinical decisions
in a sense are in this kind of personal
gray zone rough and a little bit
uncertain we talked to people we offer
choices people make a choice sometimes
it's not the choice we would have picked
but it doesn't matter we're not
generalizing from this we have no
intention of write an article about it
we don't want to take the parents to
court or to set some sort of broad
precedent based on these kinds of gray
zones we're all uncertain in the
decision that has taken ends with or the
controversy ends with the decision for
cultural gray zones something larger is
at stake the decision has ramifications
to make a certain choice entails moral
commitments that go beyond the
particular case such Gray's owns arise
when some people have a strong
conviction about what is right and other
people don't see it as important in that
sense what they're disagreeing about is
not just the decision or the case but
about the symbolic resonances of the
case so another such conflict that
illustrates this and one that has little
to do with neonatology per se although
it does involve babies but was probably
the biggest controversy that has ever
embroiled the American Academy of
Pediatrics Committee on bioethics and it
followed their recent statement on
female genital cutting in this case even
the words used to identify the
you trigger morale controversy the
Academy's prior statement on this topic
was called female genital mutilation the
revised statement shifted a bit and
talked about cutting the most
controversial paragraph of the new
statement suggested that in some cases
pediatricians might work with and be
tolerant of parents whose cultural
beliefs and commitments demanded a
surgical procedure on their daughter's
genitalia one way they could do that the
committee suggested would be by offering
instead of the full a traditional
procedure simply a quote ritual Nick of
the labia it liken this to other widely
accepted non therapeutic procedures such
as male circumcision or ear piercing it
argued that for some parents some sort
of procedures like this might be thought
necessary for cultural reasons and for
such parents the procedure would likely
be done less safely if it was done by
traditional methods rather than by
pediatricians therefore the argument
when pediatricians should offer to do it
even if they didn't like it for the sake
of the child's interests offering such a
ritual Nick they wrote may save some
girls from undergoing disfiguring and
life-threatening procedures in their
native countries unquote it may also the
statement said build trust of course the
committee stressed quote parental
decision making is not without limits
and pediatricians must always resist
decisions that are likely to cause harm
to children now the statement led to a
firestorm of criticism and was
eventually retracted interestingly
though the criticism came after the
statement went through the long and
arduous process of review by committee
after committee in the leadership forum
and the leadership of the Academy so
that at least in the process of putting
it together many people had looked at it
and thought we can stand behind that
that's okay but once it was opened up to
the larger cultural disco
should the criticism became so intense
that they backed off and now if you go
to the website it says this page is no
longer operable but the arguments that
were made in a way had the same
structure as those in the trisomy 18
case on the one side people passionately
put forward moral absolutes this is
wrong there's no room for compromise any
genital cutting is unambiguously wrong
in a way that ought not to even be
dignified with an attempt at a rational
argument on the other side where people
who seemed wishy-washy morally
relativistic these folks seem to be
saying in essence says different strokes
for different folks who are we to judge
let's try to be tolerant of cultural
differences to be fair the tolerance was
not infinitely tolerant they had their
moral absolutes as well clitter ectomy
for example but they saw a gray zone
around the ritual Nick where other
people saw only black and white now
these cultural gray zones then our
domains where there are deep
disagreements not just about what is or
is not the right thing to do but even
about whether it's morally permissible
to see grayness the grayest of grey
zones are the ones in which some people
see gray and others deny the moral
legitimacy of the people who see
anything but black and white they're
usually zones in which fundamental
cultural values clash but and this is
important the very phrase cultural
values suggests just the sort of
relativism that undergirds the conflict
in the first place to the extent that we
have any uncompromising moral
commitments we are able to have those
uncompromising moral commitments
precisely because we don't see them as a
cultural value we see them instead as
being beyond culture beyond discussion
almost universal they're only possible
if we believe in trans cultural
Universal moral norms moral norms that
are so basic and fundamental that even
to dignify them with an argued moral
justification is immoral we all have
them we generally don't discuss let's
talk about the pros and cons of burning
widows let's talk about cannibalism
who's in favor you know make a moral
argument trafficking child sex workers
pros and cons clitter ectomy the clash
occurs when others attempt to moderate
claims by offering of you in which
culture becomes more tolerant and
accepting of what had not before been
deemed culturally acceptable there may
be other gray zones the trivial ones in
which people agree to disagree but the
ones that are interesting to bioethics I
think and the ones that are the ones
that really matter in this fundamental
way to people who are engaged in the
discussion the controversy over the
ritual Nick is a disagreement that
really matters those who oppose female
genital mutilation think that is not
only wrong but deeply unalterably
fundamentally criminally wrong some
disagreements in neonatology are the
same those who think that all otherwise
healthy 25 weekers ought to be saved
think that those who allow parents to
refuse treatment are outside the bounds
of rational discourse about morality if
you don't see that with 25 weekers think
of it with 26 or 27 everybody at some
point it seems crosses the threshold
we're at the threshold where rational
discussion is no longer permissible and
anybody who tries to make a rational
argument is themselves immoral in both
cases the threshold for preemies and the
threshold for say surgical genital
alteration the ones imbued with moral
passion see the moral relativism of the
others as emblematic of a worldview that
is itself deeply flawed
it is not the ritual Nick itself that is
the object of the attack the ritual Nick
is a powerful symbol for the vast and
complex cultural religious and economic
systems that mutilate abuse and
disempower women and evil so powerful
that it should brook no compromise and
evil about which the very notion of
compromise is anathema now this sort of
uncompromising moral languages the sort
of language that we usually associate
with fundamentalisms of one sort or
another a good example of such language
coming from a proud and unapologetic
fundamentalist Tris engelhardt can be
found in a recent provocatively entitled
paper that he wrote called moral
knowledge some reflections on moral
controversies incompatible moral
epistemologies and the culture wars he
begins by noting quote a striking
feature of contemporary debates about
the morality of abortion is that the
disagreements cut so deeply unquote he
then suggests that they cut so deeply
because they are about a deep and
fundamental way of thinking about the
world and about what it means to think
about morality a secular culture he
notes is framed by an understanding of
moral rationality radically at odds with
that of an authentic Christianity
unquote this understanding he suggests
can never find compromise and shouldn't
with an understanding based on what he
calls a proper Christian understanding
of the world and vice-versa a proper
Christian understanding of the world he
argues should never find compromise on
fundamental issues with a secular
understanding of the world at stake he
writes our matters that reach beyond
conceptual analysis and beyond the
assessment of arguments we need he
suggests quote a reexamine of
re-examination of
oral epistemology and the source of
moral premises go there and you can't
have the sort of argument I'd originally
plan to talk about an argument in which
we all agree that there ought to be some
sort of threshold for survival or
quality of life or cost-effectiveness
that defines the gray zone and the
problem becomes collecting the data that
will allow us to define precisely where
that threshold lies in our mutually
agreed upon predefined terms one sort of
argument is one that starts with these
mutually agreed upon premises the other
is about the premises about the starting
point about the basis of what it means
to have an argument or a discussion that
we might call moral again I'm not
interested in here here and whether the
Christian perspective is the right
perspective any more than I am in which
group of neonatologists is right about
trisomy 18 or which aap faction is right
about the ritual Nick I'm interested
instead in the conceptual structure of
gray zones and because I think
understanding the conceptual structure
of gray zones allows us to begin to
understand what it is that makes some of
them shift and some of them stay
stubbornly where they are one more
conceptual example and then i'll show
how this plays out with a clinical
example and then I'll finish up one can
see the structure of this argument not
just in the writings of Christian
fundamentalist like angle heart but also
in the writings of secularists as well
Tony Judt was a political commentator
wrote a recent book about politics in
the US and Europe that he calls ill
fares the land and he talks about the
differences between liberals and Social
Democrats a liberal he notes is quote
someone who opposes interference in the
affairs of others who is tolerant of
dissenting attitudes and unconventional
behaviors liberals he goes on have
historically favoured keeping other
people out of our lives leaving
individuals the maximum space in which
to live
and flourish as they choose Social
Democrats jute rights by contrast
believe in the possibility and the
virtue of collective action for the
collective good the classic liberal may
have a personal idea of the good but
radically rejects the notion the state
should endorse any collective idea of
the good except that which promotes and
maximizes individual freedom the social
democrat by contrast argues for
particular ideas of the good and sees
the interference with individual liberty
is not only tolerable but preferable
when harnessed to these larger morally
defensible social goals for a recent
example of this disagreement playing out
on the national political stage in the
United States see Rand Paul's discussion
of the Civil Rights Act and the question
of whether government should compel
private establishments like restaurants
to serve people regardless of their race
a Social Democrat or what we in America
today would call a liberal would say of
course they should be compelled the
government has an idea of the good that
includes certain restrictions on what
private restauranteurs can do a classic
liberal in jute sense what we in America
today would call a libertarian my
grandpa would say of course not a
private establishment should be left
alone from these sorts of restrictions
and there should be black only
restaurants in white only restaurants
and mixed restaurants and let the market
take care of it and we'd have a better
society Rand Paul then sees a gray zone
and tried painfully to explain to Rachel
Maddow why it seemed gray and Rachel
found him unspeakably in moral views she
expressed with that little arching
eyebrow and the half smirk that she uses
to say he's not one of us
and she found his political views
intolerable precisely because he saw a
gray zone here pediatric bioethics in
fact all ethics regarding the care of
and nurture of children is interesting
in this context precisely because
children are so under theorized by
classic modern liberal political
philosophy and by bioethics children do
not act autonomously so they can't
demand the sorts of freedom from
interference that grounds the liberals
argument decisions must be made for them
they're fundamentally then part of a
social democratic way of looking at the
world and a tepid liberalism imagines
the parents decisions about and for
their children deserve the same sort of
respect and protection as decisions that
individuals make for themselves but this
quickly runs into incoherence parents
freedom deserves respect only to the
extent that it doesn't interfere too
much or too deeply with children's
nascent developing freedom children are
not chattel they have a right to be
allowed to develop into moral agents but
confusions about the commitments and
implications of liberal political theory
is precisely what puzzled the ACLU for
example who couldn't decide which side
to take in the Baby Doe conflict that
norm was talking about should they be on
the side of the parents and their civil
liberties to be to make decisions about
their family consistent with their
values or should they be on the side of
the civil liberties of the baby to not
be denied a life-saving surgery the
confusion about babies was reflected in
the media discussions where journals
with traditional political alignments
that differ on most issues like the New
England New York Times in the Wall
Street Journal were on the same side in
the Baby Doe controversy in favor of the
parents rights to refuse treatment
whereas journals at the extreme like the
nation on the left and the Nash
review on the right argued in favor of
the baby against the parents the nation
as a disability rights case in the
National Review as a right to life case
now as you know and as norm talked about
doctors used to disagree about whether
to operate on babies with down syndrome
and it's interesting that this is a
perfect example of a situation in which
the gray zone has shifted has changed
these used to be private decisions that
parents were allowed to make doctor sat
down with parents they discussed it
parents could choose surgery or not if
you look at old surgery text books or
articles in surgery journals series of
cases of duodenal atresia and their
outcomes they'll have a few asterisks by
some of the cases and say not operated
on down syndrome or mongolism and
there's no discussion of this as an
ethical problem it was private then
people started to think maybe the law
should change or maybe this was against
the law in fact Norma wrote one of the
great articles explaining how many laws
it was actually against I believe there
were 12 and Counting that people were
potentially viable for which frightened
duffin campbell who were making these
sorts of decisions and had published a
paper about it may defiantly concluded
their paper by saying if this is against
the law the law should be changed they
were prophetic in that the law was
changed but not in the direction that
they hoped it would go what in 73 and 63
and 53 had been a graze own became after
1983 completely black and white by Edict
of the federal government non treatment
of babies with down syndrome and
duodenal atresia was taken out of the
gray zone out of the realm of personal
moral decision-making and made mandatory
we became fundamentalists on this issue
intolerant of moral diversity but
diversity similar things happened with
respect to chemotherapy for leukemia at
the same time trisomy 18 was elevated to
gray zone status now other domains
remain a little gray hypoplastic left
heart syndrome
a good example not aware of any legal
case that that specifically addresses
the issues raised by decisions about
surgery or comfort care for hypoplastic
left heart syndrome some centers
continue to offer comfort care at other
centers this is not offered in those
centers some doctors say they would take
parents to court if they refuse other
doctors say they would not take parents
to court if they refuse we don't know
what a court would say if somebody took
them to court but for those on both
sides of the debate the outlines of the
controversy are similar to this classic
raised own structure parental decision
making is not without limits
pediatricians must always resist
decisions that are likely to be to cause
harm to children but an interesting
question is why does the situation
around hypoplastic left heart stay gray
in ways the situation around downs in
room didn't hot and that may be a topic
for a different paper but it turns out
that it takes a rare combination of
social political moral and economic
forces to bring particular gray zone
issues out of the private realm and into
the public realm and it's usually a
painful and divisive process that ends
when the dust has settled with a shift
in one direction or another and I think
this is an important feature of gray
zones which ultimately answers the
fundamental question that they raised
which is to define for us the limits of
a ability to live with moral
ambiguity and to tolerate moral and
cultural differences within a secular
pluralist democracy thanks
you
