The Ethics of Newborn Resuscitation

Mark R. Mercurio, MD, MA

It is widely believed in neonatology and obstetrics that there are situations in which it is
inappropriate to attempt newborn resuscitation, and other times when newborn resuscita-
tion is obligatory despite parental refusal. In each case, an ethical justification for the
decision needs to be identified. This essay is intended to provide guidance in deciding
when resuscitation should be attempted, and in identifying ethical considerations that
should be taken into account. It specifically addresses the issue of extreme prematurity,
including an analysis of current recommendations, the data, relevant rights of patient and
parents, and a discussion of the relative merits of withholding resuscitation vs providing
resuscitation and possibly withdrawing intensive care later. In addition to extreme prema-
turity, the considerations presented are also relevant to a wider spectrum of newborn
problems, including Trisomy 13, Trisomy 18, and severe congenital anomalies.
Semin Perinatol 33:354-363 © 2009 Elsevier Inc. All rights reserved.

R esuscitation of the newborn is a relatively common med-

ical intervention that can have profound effects on the
life of the patient, and the patient’s family. Guidelines for how
to carry out newborn resuscitation (NBR) are in place and are
widely followed.1,2 Some aspects of the recommendations
and generally accepted practice have been well studied and
stand on a firm scientific basis, other aspects less so. Simi-
larly, there are guidelines and recommendations for the eth-
ical questions associated with NBR, some based on sound
ethical reasoning, some less so. The purpose of this essay is to
provide an ethical analysis of a fundamental question associ-
ated with NBR: how should we determine which patients
should undergo the procedure?
NBR is here intended to encompass more than just the “full
code” that might occur in the delivery room (DR) or in the
newborn intensive care unit (NICU), with intubation, chest
compressions, epinephrine, etc. Consistent with its usage by
the American Academy of Pediatrics (AAP) Neonatal Resus-
citation Textbook,1 NBR is here used to refer to the interven-
tions made (most often in the DR) to stabilize a patient im-
mediately upon birth. Such interventions may be minimal,
such as brief positive pressure ventilation via Ambu bag, or
more extensive, including intubation, chest compressions,
emergency vascular access, medications, replacement of in-
travascular volume, or tube thoracostomy. The clinical status
of the patient generally determines which of these interven-
tions are carried out. In each case, however, the intention is
Department of Pediatrics, Yale University School of Medicine, New Haven, CT.
Address reprint requests to Mark R. Mercurio, MD, MA, Department of
Pediatrics, Yale University School of Medicine, PO Box 208064, 333
Cedar Street, New Haven, CT 06520. E-mail: mark.mercurio@yale.edu
the same: to save the infant’s life and minimize morbidity.
Provision of NBR presupposes that these goals are desir-
able and achievable. If not, it makes little sense to put the
staff through the effort or, more importantly, to put the
patient through the experience.
In some circumstances, no effort is made to save the life of
the newborn. Rather, efforts are directed toward providing as
peaceful a death as possible for the child, in a setting of
emotional support for the parents. Some might believe that
this approach is never ethically justified, perhaps stemming
from a belief that every moment of life is precious, and every
possible intervention should be made even if it only adds
hours or minutes (possibly painful minutes) of life. Others
might suggest that the decision to provide or withhold NBR
should always be left to the parents. Both these approaches
offer a notable advantage: avoiding the difficult ethical
work of determining when to attempt resuscitation. How-
ever, there is widespread agreement within the medical
profession that in some settings NBR should clearly not be
attempted, and this seems right. However, if we believe
that physicians should exercise judgment in these matters,
we are left with the work of deciding how to make such
judgments.
Professional
Guidelines and Standard of Care
With regard to the procedures involved in NBR, some phy-
sicians will prefer to simply be given the guidelines, and leave
analysis of the data to others: “Don’t show me the evidence
for using 100% FiO2 vs 21%, just tell me what to do.” Such an

354 0146-0005/09/$-see front matter © 2009 Elsevier Inc. All rights reserved.
doi:10.1053/j.semperi.2009.07.002
The ethics of newborn resuscitation
approach certainly saves the physician intellectual work. The
downside, of course, is that he or she is left without an ap-
preciation for how to view the guidelines, how flexible to be,
or when it would be reasonable to deviate from these guide-
lines. The strength of any guideline or standard should be
seen as proportional to the scientific evidence and physio-
logic reasoning that support it. Similarly, some physicians
might prefer simply to know the guidelines for addressing
ethical questions in NBR, and leave the ethical analysis and
justification of those guidelines to others. Although it is not
suggested that ethical justification is equivalent to data anal-
ysis, there is an analogy to be drawn. The same downside is
encountered: the physician is left without an appreciation of
how the ethical guidelines came about, or the strength of the
relevant moral arguments, and thus cannot judge how strictly
the guidelines should be applied, or when it would be rea-
sonable to deviate from them.
We should not simply revert to guidelines in an effort to
avoid analysis. Nevertheless, every physician involved in
such decisions should be familiar with current guidelines and
professional standards with regard to ethical questions in
NBR. They are produced by colleagues who have given the
question great thought, and represent a reasonable place to
begin.
The AAP’s Textbook of Neonatal Resuscitation, published
in 2006, acknowledges that there are some settings in which
NBR can be withheld:
Where gestation, birth weight, and/or congenital anom-
alies are associated with almost certain early death, and
unacceptably high morbidity is likely among the rare
survivors, resuscitation is not indicated, although excep-
tions may be appropriate in specific cases to comply with
parental request. Examples may include the following:
Newborns with a confirmed gestational age of less than
23 weeks or birth weight of less than 400 g, anencephaly,
confirmed Trisomy 13, or Trisomy 18. In conditions
associated with uncertain prognosis, where there is bor-
derline survival and a relatively high rate of morbidity,
and where the burden to the child is high, some parents
will request that no attempt be made to resuscitate the
baby. An example may include a baby born at 23 to 24
weeks’ gestation. In such cases, the parents’ views on
either initiating or withholding resuscitation should be
supported.3
The International Liaison Committee on Resuscitation
(ILCOR), a group involved in developing the AAP text, also
published guidelines in 2006 nearly identical to those of the
AAP, noting that in conditions associated with a high rate of
survival and acceptable morbidity, resuscitation is nearly al-
ways indicated.2 The United Kingdom’s Nuffield Council on
Bioethics published guidelines in 2006 suggesting that, al-
though NBR should not be standard practice at 22 completed
weeks, it should be provided if requested by informed par-
ents. They further recommend that parents should also be
given the choice at 23 completed weeks, and possibly at 24
weeks; however, by 25 weeks NBR should be required absent
some severe abnormality.4
355
The AAP Committee on Fetus and Newborn, in their most
recent statement on noninitiation or withdrawal of intensive
care for high-risk newborns, did not suggest specific gesta-
tional age guidelines. They did, however, reiterate the same
basic principles found in the other policies cited: When early
death is very likely and survival would be accompanied by
high risk of unacceptably severe morbidity, intensive care is
not indicated. When survival is likely and risk of severe mor-
bidity is low, intensive care is indicated. Further, for cases
that seem to fall between these two categories, parental de-
sires should determine the treatment. Furthermore, this
group specifically emphasized the importance of basing de-
cisions on an assessment of the child’s best interest.5 An in-
tervention is generally considered to be in a patient’s best
interest if the overall benefit to the patient outweighs the
overall burden to the patient.
Each of these groups undoubtedly recognized that gesta-
tional age or birthweight limits might need to be reconsid-
ered over time, but identified the general guidance principles
that they felt should prevail. That is, decisions regarding at-
tempting or withholding NBR should be based on the likeli-
hood of survival and severe or unacceptable morbidity, and
parents should be given discretion in some circumstances.
This seems like good advice, but the clinician is left to inter-
pret how likely survival would be, or how severe the disability
must be, to determine the plan. Terms like “unacceptably”
severe morbidity beg the question: unacceptable to whom?
The Law
The focus of this article is the ethical question related to NBR,
which is distinct from the legal one. In addition, familiarity
with the law does not substitute for ethical analysis, any more
than does familiarity with professional guidelines, and
quickly deferring to either in an effort to avoid the work of
locating a moral justification for our actions would be mis-
guided. Moreover, an analysis of the law regarding NBR is
beyond the scope of this essay, and beyond the expertise of
the author. Nevertheless, the question “What does the law
say?” is an important one, particularly to the practicing phy-
sician. A few points are worthy of mention both for practical
use by the clinician and as background for the ethical discus-
sions that follow.
Many aspects of the law will vary from state to state, and
each clinician should become familiar with the relevant legal
requirements where he or she practices. Readers are advised
to seek the guidance of their institution’s attorney. Experi-
ence has shown, however, that often the law will not address
the question directly, or will be vague. Two pieces of federal
law that may directly address the question are the Child
Abuse and Prevention Treatment Act (CAPTA) and the Born
Alive Infants Protection Act (BAIPA).6
CAPTA, or the “Baby Doe Regulations,” derive from a well-
known case in the 1980s of a newborn whose parents, on
advice from their obstetrician, refused surgery for tracheo-
esophageal fistula. That advice, and their refusal, were due to
concerns about ongoing disability and poor quality of life due
to Trisomy 21. The Court upheld the parents’ right to refuse,
356
and Baby Doe died shortly thereafter.7,8 Belief that aggressive
medical and surgical care could be withheld from patients
with Trisomy 21, not rare within the medical profession at
that time, has in subsequent years given way to a general
understanding that active measures to save such children are
appropriate, and most often obligatory. In the aftermath of
that event, however, federal regulations were passed to en-
sure that babies were not denied treatment based on disabil-
ity, and these regulations clearly have a much wider applica-
tion beyond Trisomy 21.
Some believe AAP recommendations allowing parents and
physicians latitude in decisions to withhold NBR, based on
their assessment of the child’s best interest, are consistent
with CAPTA rules currently in place. Others see this is as an
overly optimistic misreading. The bioethicist Loretta Kopel-
man9 has argued that an objective interpretation of the rules
shows them to be far more restrictive than professional rec-
ommendations or common medical practice with regard to
withholding treatment such as NBR. As such, she has advo-
cated revision of the regulations, replacing them with a best
interests approach, arguing that the CAPTA rules currently in
place “unambiguously embrace the right-to-life view that
maximal treatments cannot be withheld or withdrawn unless
an infant is dying or comatose.”10 Sadath Sayeed, a neonatol-
ogist and attorney, has stated that the CAPTA rules “arguably
remove quality-of-life considerations from the decision-mak-
ing calculus and therefore may conflict with the best-interests
standard paradigm advocated by the AAP.”11 If they are cor-
rect, these rules have not in recent years been widely en-
forced, but remain a potential concern for physicians.
The Born Alive Protection Act (BAIPA), made law in 2002
as Public Law No. 107-207, essentially states that infants
born alive at any stage of development are persons, entitled to
all protections of the law that status implies. The law might be
interpreted as requiring parents and physicians to attempt
resuscitation on all newborns, regardless of gestational age or
prognosis, but that does not appear to be the case. For a
patient of any age, physicians would not be expected to pro-
vide resuscitative efforts, or any procedure, if there were no
chance of success. Thus, to treat infants as one would treat
older patients is to give physicians a similar degree of latitude.
For newborns, even those of doubtful viability, however, a
screening physical assessment may be required if requested.
Readers are encouraged to discuss this possible requirement
of the law with legal counsel.
The AAP Newborn Resuscitation Program Steering
Committee has stated their position that the BAIPA should
not effect the approach that physicians follow with respect
to the extremely premature infant, in particular the reli-
ance on the patient’s best interest standard. They do, how-
ever, recommend that medical condition and prognosis be
assessed at delivery, before making a final decision to
withhold NBR.12 If one chose to follow that recommenda-
tion, it seems reasonable that the individual performing
the screening exam should be qualified to make the nec-
essary judgments.
M.R. Mercurio
An Approach to the
Fundamental Ethical Question
The fundamental ethical question with regard to NBR is:
“How should we decide which newborns to resuscitate or
attempt to resuscitate?” Perhaps the best answer, at least ini-
tially, is the same as for any other medical intervention: it
should be attempted when there is a reasonable chance it will
provide the patient with an overall net benefit and does not
represent an injustice or unfair burden to others.
A sound approach to the question should have two com-
ponents. First, the relevant data, such as predicted survival
and morbidity, should be understood. This includes the de-
tails and flaws of the available data. An assessment of net
benefit or patient’s best interest will necessarily be a subjec-
tive one, possibly leading to disagreements or flawed judg-
ments. This problem is to some extent unavoidable, but is
compounded if we begin with a poor understanding of the
facts. The second component of a sound approach is the
application of ethical reasoning or analysis to those facts.
Ethical reasoning could be considered in many different
ways. One possibility used in this discussion, is an analysis
based on considering the rights of various individuals. This is
not the only possible approach, or even necessarily the best
one, but it is one that may prove useful in bringing out and
weighing the relevant considerations. This analysis is in-
tended as a practical aid to clinicians making these difficult
decisions. With that in mind, the discussion is considered in
the setting of a specific clinical problem: extreme prematu-
rity. The discussion should, however, be applicable to other
problems as well.
Understanding the Data
In the case of extreme prematurity, some justify withholding
NBR despite parental request at or below 22-week gestation
on the basis that survival would be impossible, or virtually
impossible. This would indeed be a valid justification if it
were true. The philosophic tenet that “ought implies can”
rightly suggests that physicians cannot be obligated to do
something that is not possible, such as save the life of a child
who cannot be saved. However, this understanding of the
potential for survival at 22 weeks is incorrect.
A review of the published survival rates for infants born in
tertiary centers in the U.S. in the 1990s showed survival rates
at 22 completed weeks (22/0 through 22/6) averaged 10%
(n ⫽ 151).13 The published survival rates for infants born at
22 completed weeks from 1995 to 1996 at the 14 tertiary
centers that make up the National Institutes of Child Health
and Human Development (NICHD) Neonatal Network, was
21% (n ⫽ 56).14 There are potential problems with these
data, as will be discussed below. Nevertheless, it seems inac-
curate to say that survival below 23 weeks is impossible, or
virtually impossible. This should not necessarily lead one to
conclude that NBR must be attempted at 22 weeks, but only
that if one is seeking a justification for withholding NBR,
The ethics of newborn resuscitation
particularly when requested by informed parents, one needs
to look further than “it can’t be done.”
Among the many problems associated with reported sur-
vival at 22 and 23 weeks is the self-fulfilling prophecy.15 For
most centers, NBR is rarely if ever provided to infants at 22
weeks, and thus their survival statistics at this gestational age
will necessarily approach zero. When trying to determine if
NBR should be attempted or can ethically be withheld, how-
ever, the relevant question regarding potential survival is not:
“what are our survival statistics for all children born in this
circumstance?” Rather, the relevant question is “what would
be the chance of survival if we tried?” For conditions in which
we always or nearly always try, such as at 25 weeks and
above, our survival statistics may adequately answer the rel-
evant question. For conditions in which we commonly do
not try, such as 22 weeks, the relevant question may be more
difficult to answer, and our survival statistics may be of little
help. It is worth emphasizing that, even if parents are not
savvy enough to ask the relevant question, this does not
relieve our responsibility to address the matter with them and
with one another, even if the honest answer is “I do not
know.”
There is information available that may provide us with at
least some idea with regard to the relevant question at 22
weeks. In Japan, where it would appear they try more often to
save infants at this gestational age, survival to discharge of
infants born in 2005 at 22 weeks gestation was reported to be
34% (n ⫽ 97).16 It is not clear whether they tried in every
case, or that these numbers are directly translatable to our
patients or NICUs. Nevertheless one can appreciate that, in a
setting where they are more aggressive, survival is signifi-
cantly higher. Recent U.S. data may reflect this same finding.
Tyson et al and the NICHD Neonatal Network published
survival and neurological outcome data for 4446 patients
born at 22-25 weeks, from 1998 to 2003.17 Overall survival
at 22 weeks was 5%, but for those placed on mechanical
ventilation it was 21%. At 23 weeks, survival was 26% overall
and 37% for those who received mechanical ventilation.
The Network data may be only a rough measure of out-
come in the setting of maximal efforts: some patients who
were aggressively resuscitated may nevertheless not have sur-
vived long enough to be placed on the ventilator, and some
who were withdrawn from the ventilator (perhaps out of
concerns about neurological morbidity) might have survived
had maximal efforts continued. Survival statistics for extreme
prematurity and other potential lethal conditions may change
over time, but the risk of misusing data because of the self-
fulfilling prophecy will remain.
Another limitation of the data, and a potential for its mis-
use, is our inability in most cases to know the exact gesta-
tional age of the expected newborn. One might describe an
anticipated delivery as being “23 weeks and 4 days,” based on
a recent ultrasound, but in so doing we run the risk of mis-
leading ourselves and the prospective parents, overestimat-
ing our ability to know the gestational age. In the absence of
in vitro fertilization or a very early ultrasound, the best ob-
stetrical estimate is often accurate only to within two weeks.18
Thus, the clinician would do best to consider that this patient
357
may be somewhere between 21 and 25 completed weeks. It is
worth noting that the survival data generated in published
studies are also commonly based on best obstetrical estimate,
with the same limitations.
Neonatologists also sometimes overestimate their own
ability to judge gestational age based on physical examina-
tion. Experience has shown that, just as with older children,
fetuses mature at different rates. This refers not only to their
lungs, but also to outward appearances sometimes used by
neonatologists to estimate gestational age, such as transpar-
ency of skin or fused eyelids. It is unlikely, and there is no
evidence to suggest, that we can judge gestational age better
than within 2 weeks based on physical exam. Thus, to make
a plan based on best obstetrical estimate, and then alter that
plan after delivery only because the newborn appears one or
two weeks older or younger than expected, seems to make
little sense.
Perhaps even more important than acknowledging our in-
ability in most cases to know the exact gestational age, is the
realization that predictions of mortality and morbidity based
on gestational age alone may be inappropriate. Tyson et al17
and the online statistical tool (Outcome Estimator) based on
the NICHD data clearly illustrate that mortality and likeli-
hood of neurodevelopmental impairment (NDI) are affected
independently by gestational age, birth weight, gender,
whether antenatal steroids were given, and whether the in-
fant is a product of a single or multiple gestation.19 A combi-
nation of factors besides gestational age can outweigh the
prognostic significance of gestational age alone. For example,
a larger singleton female at 23 weeks who received antenatal
steroids may have a better predicted outcome than a smaller
twin male delivered at 24 weeks.
Moreover, the importance of these factors causes marked
variability in the predicted outcome within a specific gesta-
tional age. Predicted survival for a 500-g male twin at 23
weeks is 9%, and 14% if placed on a ventilator. In stark
contrast, for a singleton female at 23 weeks, weighing 600 g,
who received antenatal steroids, predicted survival is 40%,
and 51% if placed on mechanical ventilation. Although it
would be a mistake to overestimate the accuracy of any such
prediction, and using estimated fetal weight adds another
level of imprecision, it nevertheless clearly seems wrong to
provide identical prognostic information to these two sets of
prospective parents.
In addition to predicted survival, clinicians and parents
often consider the likelihood of permanent disability when
making decisions about NBR. The very large and relatively
recent dataset used by the NICHD Outcome Estimator pro-
vides information regarding rates of survival and NDI. NDI is
defined as a Bayley mental developmental index or psy-
chomotor developmental index ⬍70, moderate/severe cere-
bral palsy, bilateral blindness, and/or bilateral hearing loss
requiring amplification. Among infants placed on mechani-
cal ventilation, survival to discharge for those born at 22
completed weeks was 21%, but survival without NDI was
only 5%. For those born at 23 weeks, survival was 37% and
survival without NDI was 13%. At 24 weeks, survival was
60% and survival without NDI was 30%. For those born at 25
358
weeks and placed on mechanical ventilation, survival was
77% and survival without NDI was 46%.
These morbidity data, though useful, have at least two
important limitations. First, the follow-up evaluations were
performed at 18-22 months adjusted age, as is the case with
many large datasets commonly referenced. There is evidence
that such early evaluations overestimate the likelihood of
disability at a later age.20 The clinician should keep this lim-
itation in mind when making NBR decisions based on the
likelihood of permanent disability. The risk to ethical coun-
seling and decision-making is overestimating our ability to
predict disability on the basis of these early evaluations.
Even if one could accurately predict the objective level of
disability that a child would be left with, it is far more difficult
in most cases to predict the subjective perception of that
disability by the parents, and most importantly by the child
herself. There is evidence that physicians have a significantly
worse perception of quality of life for those with disability,
particularly severe disability, than do adolescents, parents of
former extremely-low-birth-weight infants, or parents from
the community.21 Moreover, as a group, extremely-low-
birth-weight teenagers tend to rate the quality of their lives as
high. In response to this observation, Sagal has rightly sug-
gested that “the viewpoint of those who have to live in a
certain health state is what really matters, and we need to
accept the personal perspectives of people with disabilities
rather than impose our own values and preferences.”22
In addition to understanding the available data, it is
equally important to acknowledge where data do not exist at
all, and at least one important example warrants mention.
Many neonatologists, and some published recommenda-
tions, suggest that decisions regarding NBR can be based on
the newborn’s initial appearance (eg, vigorous vs floppy/
apneic). There are no data that show this is predictive of
outcome. In fact, Apgar scores at 1 and 5 minutes have
specifically been shown not to be predictive.23 As
Meadow24 has rightly stated, “The power of quantifiable
proxies of ‘how the infant looks at birth’ or ‘how the infant
responds to resuscitation’ (Apgar or heart rate at 1 or 5 min-
utes) to discriminate ‘good’ from ‘bad’ outcomes (death or
survival with severe neurological deficit), is so poor as to be
clinically and ethically irrelevant.” If a plan is agreed upon
with the parents before delivery, it seems most appropriate to
stay with the plan unless an observation is made in the DR
that significantly alters the prognosis used to reach that de-
cision.25 Examples might include size or apparent gestational
age markedly different than expected.
The Rights of the Newborn
The data, and their potential limitations, should be consid-
ered in light of the many relevant rights in determining
whether to provide NBR. No single right will be the primary
or determinative factor for every decision. Each must be
taken into account and weighed relative to the others when
reaching a decision for a given child, or when crafting guide-
lines. The first to be considered are the rights of the newborn
patient. Perhaps the most obvious of these is the right to life.
M.R. Mercurio
“Right to life” here refers to the term’s most basic and
fundamental meaning, as an “unalienable right” accorded to
all members of society, dating to Jefferson, Mason, and
Locke. Along with the right to life comes a right to feasible
medical treatment that has a reasonable chance of preserving
one’s life. This might suggest that a newborn has a right to
NBR if there is even the remotest chance that she could sur-
vive with it, but that is not necessarily the case; although this
is arguably the most important of the rights to be considered
here, it can nevertheless be trumped by other rights in certain
situations.
A second right, often considered but not always articu-
lated, is the right to mercy. The newborn patient has a right
not to be subjected to pain or discomfort that is very unlikely
to yield a net benefit to her. Of course, determining the “net
benefit” is a very subjective matter. What chance of survival
does one need to have to justify a long and painful NICU
course? Furthermore, should the newborn survive the NICU,
she might be left with permanent severe disability that also
must be taken into consideration. However, as was discussed
previously, quality of life assessments are very subjective, and
thus decisions based on them should be reached with great
caution. Nevertheless, it seems reasonable to conclude that
there is some level of burden or suffering beyond which a
person would prefer not to accept (or continue) a proposed
medical intervention. Indeed, this understanding is founda-
tional to adult medical ethics. Adults, or their families speak-
ing on their behalf, are permitted to conclude that a medical
intervention is not worth the pain and trouble. Newborns
should be accorded that same right.
The third right to be discussed is the right to justice, or fair
treatment. Inherent to this right is our obligation to treat
patients equally, unless there is a morally relevant difference
between them.26 Ethnicity, for example, may represent a dif-
ference between patients, but not a morally relevant differ-
ence, and thus it would be a violation of a newborn’s right to
justice to treat her differently with regard to NBR based solely
on ethnicity. At least three potential violations of this right
with regard to NBR deserve consideration.
The first relates to guidelines that determine eligibility for
NBR based solely on gestational age. Consider a guideline
that generally allows informed parents to decide whether
NBR will be attempted at 23 weeks, but denies them that
option below 23 weeks. Under such a guideline, a woman
about to deliver a boy at 23 weeks is given a choice with
regard to NBR, whereas a woman in the next room about to
deliver a larger girl at 22 weeks is given no option, despite the
fact that the 22-week girl has as good (or perhaps better)
likelihood of survival and intact survival. How is this justi-
fied? These two women, and hence the two newborns, were
afforded different access to NBR based solely on gestational
age. One could easily argue that between these two cases the
difference in gestational age is not morally relevant, given
that they had the same prognosis. If that is correct, then it
would be an injustice to offer NBR to one but not the other.
A second concern about justice and equal treatment arises
with regard to premature newborns compared with older
children and adults. In a study based on presenting various
The ethics of newborn resuscitation
resuscitation scenarios to physicians and others, Janvier et
al27 found a greater willingness to withhold resuscitation
from premature newborns than from other people (eg, full-
term newborns, older children, or adults) despite having the
same prognosis. That is, resuscitation was perceived as being
more optional, and less obligatory, for premature newborns
than for most others. Although it would be difficult to prove
that this occurs in the clinical setting, it seems consistent with
clinical experience. Is there a morally relevant difference be-
tween a premature newborn and an older child with identical
prognoses? One can certainly identify physiological and psy-
chological differences (eg, family and others have formed
deeper relationships with the older child), but it is not nec-
essarily evident that these differences are morally relevant.
That is, it is not necessarily clear that they translate into a
justification for unequal treatment, specifically a decreased
right to resuscitation for the preterm newborn.
As noted earlier, Kopelman9 has advocated use of the best
interest standard for making decisions regarding withhold-
ing/withdrawing life-sustaining medical interventions from
newborns, rather than the more rigid requirements of the
Baby Doe regulations. She rightly points out that those who
decide for adults (eg, family and clinicians) are permitted to
do so on the basis of the patient’s interests. Her argument that
newborns deserve the same consideration is essentially an
appeal for equal treatment, which may be seen as an appeal
based on the right to justice.
The third consideration with regard to the right to justice,
or equal treatment, is the right to an adult surrogate decision-
maker. For any patient unable to speak for himself, a surro-
gate is designated as the one who speaks on his behalf. For
newborns it is generally the parents. For adults it is generally
the spouse, a parent, a sibling, or an adult son or daughter,
but always an adult surrogate speaks and decides on behalf of
an adult patient. It is highly unlikely that a young adolescent,
such as a 13-year-old daughter, would ever be permitted to
serve as the surrogate decision-maker for an incompetent
adult. She would not be given the decision-making authority,
for example, to grant or refuse consent for resuscitation, to
the same degree as would an adult surrogate. Nevertheless,
that same 13-year-old girl could be permitted to serve as the
surrogate decision-maker for her newborn. This may be un-
derstood in light of parent’s rights, discussed below, but from
the perspective of the newborn’s rights, this seems an ineq-
uity. With this practice, there appears to be a presumption
that the adolescent’s right to decide for her newborn trumps
the newborn’s right to equal treatment (in this case an adult
surrogate decision-maker). It is not clear that this ap-
proach is appropriate, and other models may be worthy of
consideration, such as authority shared by a mother and
grandmother.28
The Rights of the Parents
In our society it is widely accepted that parents generally have
a right to make decisions on behalf of their young children,
and raise them as they see fit. This includes fundamental
decisions, such as what to be fed, where to live, where to be
359
educated, etc. It also includes medical care and the right to
provide or withhold informed consent on behalf of their
child. That is, parents have a right to be made aware of their
child’s condition and prognosis, reasonable therapeutic op-
tions available (including those at other institutions), and the
anticipated outcome and possible complications for each.
Their right to this information, it should be noted, is not
dependent on their being knowledgeable enough to ask the
relevant questions. And, most fundamental to their right to
informed consent, they have the right to choose from among
those options, or to refuse treatment. Parents also have a right
to freedom of religion, including the way religious beliefs and
practices influence their child’s upbringing and medical care.
Although physicians should acknowledge each of these
rights, and our obligation to respect them, the right of a
parent to decide in any matter is clearly not absolute. It is
limited by the right of the child to at least some minimal
standard. One has the right to decide if one’s child will be fed
beef or not, or go to parochial school or not, but not the right
to starve her or deny her any education. Once a parental
decision falls below some minimal acceptable standard, the
right of the parents to raise their child as they see fit is out-
weighed by the right of the child to be fed or educated. The
analogy to medical care is clear. One has the right to refuse
some recommended treatments based on religious, philo-
sophical, or other grounds, but no right to deny the child a
treatment that, in the words of the AAP Committee on Bio-
ethics,29 is “likely to prevent serious harm or suffering or
death.”
A parent’s right to refuse treatment on behalf of a child is
not as absolute as a competent adult’s right to refuse on her
own behalf. As stated by the US Supreme Court, parents have
a right to make martyrs of themselves, but not of their chil-
dren.30 With regard to NBR or any other intervention, it is
generally believed, consistent with guidelines discussed
above, that when the child’s best interests are unclear, par-
ents have a right to decide whether NBR is attempted. How-
ever, beyond some threshold, when the likelihood of benefit
to the child becomes high enough, that treatment should be
obligatory.
There is a mistaken belief among some that the right of a
patient or parents to refuse a treatment carries with it a right
to demand a treatment. The President’s Commission on Bio-
ethics clearly stated more than a quarter century ago that this
is not so,31 and numerous pediatric and other professional
guidelines have reiterated that point. Parents do not have a
right to demand, and thus physicians have no obligation to
provide, a treatment that offers no benefit to the child. When
a parent demands NBR where there is no perceived benefit to
the child, the parental right to decide (and the physician’s
obligation to respect that right) is outweighed by the child’s
right to mercy (and the physician’s obligation not to inflict
pain without benefit).
Parents of any NICU patient, including one soon to be
born, have a right to guidance. This should always include
presentation of the relevant data, and short- and long-term
concerns, presented in as clear and understandable a manner
as possible. But very often it should also include more. While
360
some parents may only want the information and then wish
to reach a decision on their own, many others may need
more. They might be overwhelmed by the situation, their
emotions, or perhaps the fear of guilt if they don’t “try every-
thing.” They may need more than a menu of choices. Some
families will in fact verbalize that they cannot decide, and
look to the physician for a recommendation. People in
strange territory (what could be stranger than an NICU?)
facing difficult decisions deserve guidance, even if they do
not know, or are afraid, to request it. If the physician has a
specific recommendation in mind, she should offer to discuss
it after the data have been presented, and then provide the
advice if requested, which it nearly always will be. Physicians
disagree as to how directive the recommendation should be,
and perhaps that should be driven at least in part by the
perceived needs of the parents. It is essential, however, to be
clear with parents when the presentation of fact or data is
completed and the presentation of the physician’s opinion
has begun.
The Rights of the Others
Though many believe that decisions such as those regarding
NBR and the possibility of survival with severe disability
should be based solely on the child’s best interests, it has also
been suggested that the interests of others affected by the
decision (eg, parents, siblings) should be taken into account.
In fact, if one truly wished to consider all of those affected by
the decision, the circle becomes much larger, potentially in-
cluding everyone in a society seeking to allocate and share
limited resources. Perhaps the cost to society of the immedi-
ate and ongoing care of certain newborns should or will
influence decisions regarding NBR in certain settings. How-
ever, unless and until an ethically sound universal approach
to such decisions is agreed upon, it seems unjust to single out
any given patient and deny his parents the option of NBR, or
any other procedure, based on cost to society.
The decision as to whether it is appropriate to specifically
consider the interests of family members is more compli-
cated. It has been argued that parental decisions, including
important ones, commonly take into account the interests of
the entire family, and that it is reasonable to do the same with
medical decisions.32 What is most interesting, perhaps, is the
degree to which those other (occasionally competing) inter-
ests are taken into account for newborn patients compared
with older patients. Janvier’s data and the author’s personal
experience suggest that resuscitation is viewed as more op-
tional for premature newborns than older children or adults
with the same prognosis, with the exception of the very el-
derly. This may translate into an increased willingness to
weigh the interests of others when deciding for newborns,
especially preterm newborns. While this may indeed be the
current reality at least for some, it is not necessarily justifi-
able. Physicians need to determine whether they should ad-
here to a strict patient’s best interest standard, weighing only
the anticipated benefits and burdens to the patient of NBR
and initiation of intensive care, or whether it is appropriate to
also consider the family’s interests in the decision. Also, if we
M.R. Mercurio
are willing to consider family interests for all patients, should
this be done to an equal extent for patients of all ages? Per-
haps it is acceptable to be more willing to consider family’s
interests in the case of preterm newborns, than for older
patients. However, if that is our approach, we need to either
identify an ethical justification for this unequal treatment, or
change our approach.
Withholding vs Withdrawing
Decades ago, there was a sense among many that taking a
patient off a ventilator to allow the patient to die was uneth-
ical and unacceptable. Given that mindset, one could under-
stand a reluctance to begin in unclear cases, for fear that the
option to stop would be lost. However, it has now for many
years been widely accepted by ethicists and clinicians (in-
cluding this author) that there is no significant ethical differ-
ence between withholding and withdrawing intensive care
measures.2,33 Given that understanding, there should be less
reluctance to initiate NBR in uncertain cases, because the
option would remain to withdraw when and if the situation
was believed to warrant it. In fact, one could argue that in
uncertain cases it is preferable to attempt NBR and begin
intensive care measures, because as time passes there may be
more data upon which to base a decision regarding possible
withdrawal of intensive care measures.34,35 There are, how-
ever, at least 2 fundamental problems with this approach,
one psychological and one data-based.
The psychological problem is well known to neonatolo-
gists, and not difficult to appreciate: despite the ethical ex-
planations and justifications, it appears to be more difficult
for some parents to withdraw than to withhold intensive care
measures. Perhaps this is sometimes due to increased emo-
tional attachment as time progresses. That parents and others
become increasingly attached to a newborn, even a critically
ill newborn, is of course not a bad thing. It may, however,
make it increasingly difficult to agree to withdraw, even when
faced with a dismal prognosis. Moreover, despite being told
that they are not killing the child by withdrawing, but allow-
ing him to die more peacefully from his medical problems,
many do not see a distinction. The sense that “we would be
killing him if we stopped the ventilator” is surely understand-
able when physicians take an active measure, such as remov-
ing an endotracheal tube, and a child dies minutes later. This,
in the minds of some, is morally different than not intubating
in the first place, and in that way allowing the child to die.
The data-based problem with initiating NBR and then ob-
serving, is that time often does not provide more helpful
prognostic information. The patients do not always “declare
themselves,” as sometimes may be hoped. Many of the sickest
newborns die within the first few days in the NICU, but
among those that do not, it is often difficult to differentiate
who will survive to discharge, or be left with severe impair-
ment. It does not appear that our ability to predict survival for
patients in the NICU is very good, nor does that ability seem
to improve over the course of a NICU stay, though predictive
measures are being studied. Meadow’s group at the University
of Chicago, for example, has shown that clinician intuition
The ethics of newborn resuscitation
regarding death before discharge, though poorly predictive
for death, may be predictive for the combined outcome of
death or disability at two years.36 This group is also studying
the possibility that clinicians’ intuition combined with cranial
ultrasound in the first week may be even more predictive. At
present, though, it remains difficult for a neonatologist to
reliably predict long-term survival among critically ill pa-
tients in the NICU.
This is not to say that providing NBR as part of a “try it and
see” approach is inappropriate in borderline cases, but only
that it should not be done with unrealistic expectations about
the prognostic value of the information acquired in the days
after. In some cases the child will die early in the NICU
despite maximum support, and this may be a more accept-
able outcome for some parents than not trying. But among
those critically ill newborns who survive the first few days, it
is often very difficult to predict which will not survive to
discharge, or which will be left with severe impairment.
Despite the noted pitfalls, the approach of providing NBR
in uncertain cases, and then seeing how the child progresses
in the NICU, may for some parents be the most desirable
option. One important advantage is that it may avoid the
need for them to make a hurried decision at a time of great
stress, fatigue, confusion, and/or physical pain. Surely one
could argue that, if avoidable, decisions of great importance
should not be made under such circumstances (eg, late in
labor). Furthermore, some parents find it more acceptable
emotionally to initiate NBR and intensive care measures and
then subsequently withdraw when the clinical status deteri-
orates, than never to try. They may take comfort in the idea
that they “tried everything” or “gave him every chance.”
It seems appropriate that both approaches (withholding
NBR, or providing it initially and considering withdrawing
intensive care later) be available to parents in uncertain cases,
as each carries significant risks. Withholding NBR in uncer-
tain cases runs the risk of allowing a child to die who might
otherwise have survived with what the parents or child
would perceive as a good outcome. Furthermore, this is an
irreversible decision, sometimes made in the setting of great
stress and fatigue. On the other hand, providing NBR in
uncertain cases runs the risk of initially saving a child who
subsequently dies anyway, after having endured a difficult
and painful course, or survives with profound impairment,
which the parents and/or child would consider unacceptable.
The second approach has the advantage, however, of giving
the parents additional time for thought and discussion. This
advantage is nullified, though, if they perceive a loss of op-
tions once intensive care has been initiated. In questionable
cases, the conversation about options begun before delivery
should be ongoing as the NICU course unfolds.
Recommendations
There will be times when it is clearly inappropriate to attempt
or continue resuscitative efforts, even when requested by
parents. As important as it is to acknowledge and respect the
parental right to decide, that right is not absolute, and defer-
ring all decisions regarding NBR to parents is inconsistent
361
with professional obligations to act as moral agents, respon-
sible for our actions. It clearly seems wrong to put an infant
with no chance of survival through attempted intubation or
chest compressions, for example, even if parents insist. Be-
yond some threshold, it might be said, the chance of survival
is so low that the child’s right to mercy trumps the parents’
right to decide. Similarly, it seems wrong to withhold NBR
from a child with a good chance of intact survival, even if
parents refuse. Here it might be said that the child’s right to
life, and to adequate medical care, trumps the parents’ right
to decide. Once again, we may disagree on where that thresh-
old lies, but most physicians (and courts) acknowledge that
some cases will be beyond it.
Between these thresholds there will be a gray zone,
wherein the prognosis is unclear, the child’s best interest is
unclear, and the right path also seems unclear. Here, the
physician should defer to the will of informed parents. The
AAP Guidelines on Forgoing Life-Sustaining Medical Treat-
ment, applicable to children of all ages, states that such de-
cisions should be left to parents unless their choice clearly
conflicts with the interests of the child.37 This seems right,
and the cases beyond the two thresholds described above can
be seen as cases in which parental decision clearly conflicts
with the child’s best interest. The hard work, of course, is in
locating the thresholds.
Consider first the lower threshold. At some point the
chance of a good outcome, however one defines it, becomes
so low that physicians should not attempt NBR. Given the
parents’ right to decide, and our obligation to respect that
right, we will need an ethical justification for not offering, or
refusing, to provide NBR. Moreover, it should be something
more substantial than simply a pronouncement from an in-
dividual physician, a hospital, or a professional organization
that “we won’t do it.” One reasonable justification is that it
simply cannot be successful, but the “futility argument” has
lost a great deal of credibility in recent years because physi-
cians have often used it without sufficient data, or to avoid
difficult conversations with families.38 As discussed earlier,
neonatologists might make this mistake when refusing to
offer resuscitation at 22 weeks based on the impossibility of
survival, because survival, though not likely, is clearly possi-
ble. Nevertheless, some things truly are impossible, and
when that is clearly the case it would stand as a justification
for refusing. In other situations, though, a more valid justifi-
cation for refusing to resuscitate would likely be an appeal to
the patient’s best interest, though this is clearly fraught with
subjectivity. Within that consideration the child’s rights to
life, to appropriate medical care, and to mercy should all be
weighed in the balance. In locating the second threshold,
where NBR becomes obligatory, the same factors should be
considered. Importantly, they should be considered in light
of a thorough and honest appraisal of the most recently avail-
able data.
Both thresholds should be sought with professional humil-
ity, here meant to refer to 3 essential elements: (1) Admit, first
to ourselves and then to parents, what we do not know; (2)
admit what we cannot do; and (3) be honest with ourselves
about our own motives and interests (eg, fatigue) and con-
362
sider how they might be influencing our decision. This last
point may be particularly relevant to the physician consider-
ing refusal of a parental request for NBR or ongoing intensive
care in a difficult case of uncertain prognosis.
Wherever one eventually locates the thresholds, it is essen-
tial that neonatologists at a given facility reach a consensus. It
would be frustrating and unfair to parents to be told they
have a choice regarding NBR, but if the child is not born by
morning they lose their option, because a new attending is
coming on service. Neonatology sections should meet and
analyze current professional recommendations, review the
available data, and discuss the relevant ethical arguments.
They should then formulate an approach that will be consis-
tently applied, with possible room for exceptions for reasons
they set forth, and revisit that approach periodically. Other
professionals in that facility, including obstetricians and
NICU nurses, should at least be familiar with the approach
endorsed by the neonatologists, and may wish to participate
in the process used to develop it.
With regard to extreme prematurity, based on the NICHD
data, a policy based solely on gestational age does not seem
appropriate. It would be unjust to offer NBR to parents of an
infant with a given prognosis, and deny the choice to a sec-
ond set of parents whose child has the same prognosis, solely
because the second child has a lower gestational age. It would
be equally unjust to tell one set of parents that they have a
choice regarding NBR, while telling another set of parents
that NBR is mandatory due only to gestational age, despite a
similar or perhaps worse prognosis.
Perhaps it would be more appropriate to set the limits of
parental discretion not at a specific gestational age, but rather
at a certain prognosis. For example, NBR becomes manda-
tory when predicted survival is above x%, or predicted sur-
vival without severe or profound impairment is above x%.
Choosing a value for x would be a difficult and arbitrary
decision, but determining the limits of parental authority on
this basis seems preferable to treating families differently on
the basis of gestational age alone. With regard to provision of
NBR, gestational age is a morally relevant difference between
infants only insofar as it implies different prognoses. The
morally relevant difference for this decision is the prognosis
itself; thus, policies should, as far as possible, be based on
prognosis.
Ideally, consensus should be reached among centers re-
gionally or nationally. Even if equal treatment is established
within a hospital, it seems unfair that parents be denied a
choice, whereas those in identical circumstances at a facility
less than a mile away are given a choice. Reaching consensus
on a wider scale would surely be more difficult, but not
impossible. In its absence, however, parents have a right to
know what treatment options exist at other facilities if trans-
fer is feasible. Further, as with all important information,
parents should not have to be savvy enough to ask the ques-
tion in order for that information to be provided.
Conclusions
Decisions regarding the provision of NBR and ongoing inten-
sive care in cases of poor or uncertain prognosis will be
M.R. Mercurio
among the most important and difficult that neonatologists
must make. Such decisions are best made with an under-
standing of the relevant data and ethical issues, including the
rights of the newborn and the parents. An analysis of these
issues has been reviewed specifically with regard to the case
of extreme prematurity, but should also be relevant to similar
decisions in the DR, and the NICU as well, for a variety of
clinical scenarios, such as Trisomy 13 or 18, or severe con-
genital anomalies.
Acknowledgments
The author thanks Drs Bill Meadow, Joanne Lagatta, and
Sadath Sayeed for helpful conversation, and Dr Steven Pe-
terec for reviewing the manuscript and for helpful comments.
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