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