Commentary
Physicians’ Refusal to Resuscitate at Borderline Gestational Age
Mark R. Mercurio, MD
Most neonatologists believe there is a minimal gestational age, below which
it is appropriate to refuse to provide resuscitation or intensive care.
Determination of this threshold should involve knowledge of the outcome
data, but also an understanding of the potential for misuse of these data. In
particular, there is a risk of deception, of the parents and of ourselves, due
to the uncertainty of the true gestational age, and the ‘‘self-fulfilling
prophecy’’ that may occur when a center refuses to try below a certain
gestational age because they have had no survivors below that age. Finally,
any refusal to treat requires ethical justification. Concepts such as futility
and patient’s best interest should play a role in the determination of the
gestational age threshold, applied in light of the data’s inherent weaknesses.
Journal of Perinatology (2005) 25, 685–689. doi:10.1038/sj.jp.7211395
INTRODUCTION
For most neonatologists, there will be a minimum gestational age,
below which they will refuse to resuscitate despite parental request.
The American Academy of Pediatrics (AAP) has stated that
noninitiation of resuscitation in the delivery room is appropriate
for newborns with confirmed gestational age less than 23 weeks,
and that this recommendation may change as the limits of viability
change.1,2 According to a recent poll of neonatologists in
Connecticut and Rhode Island, 11% would refuse to resuscitate at
23 completed weeks, 67% would refuse at 22 weeks, 91% would
refuse at 21 weeks, and only 9% of those polled would never
refuse.3
If neonatologists believe there is a gestational age threshold
below which it is permissible to refuse resuscitation, how should
that threshold be determined? The purpose of this essay is not to
endorse a specific gestational age threshold, but rather to address
the question: How should neonatologists determine the
minimum gestational age below which it is appropriate to refuse
an informed parental request to attempt resuscitation?
Department of Pediatrics (M.R.M.), Yale University School of Medicine, New Haven, CT, USA.
Address correspondence and reprint requests to Mark R Mercurio, MD, Department of Pediatrics,
Yale University School of Medicine, 333 Cedar Street, P.O. Box 208064, New Haven, Connecticut
06520-8064, USA.
THE PHYSICIAN’S RIGHT TO REFUSE
Some might argue that a neonatologist has no right to refuse
to provide resuscitation of a live newborn, at any gestational
age. That right, however, appears to be assumed by many
members of the neonatology community. While a thorough
defense of the physician’s right to refuse is not the focus of
this essay, one justification worthy of consideration may be the
obligation of the physician to protect the newborn from inhumane
treatment.
Most would acknowledge that for patients of any age, there
could be situations wherein the prolongation of life (or
prolongation of the dying process) becomes inappropriate, and
ultimately inhumane. Competent adult patients are rightfully given
a large measure of autonomy (‘‘self-rule’’) in refusing treatment.
The care of previously competent adults is commonly guided by
advance directives, or by relatives’ assessment of what the patient
would have wanted. This, too, is an attempt to provide the patient
with some degree of autonomy, once no longer able to speak for
himself. Newborns, as with any never-competent patient, enjoy no
such right. Any protection from inhumane treatment must come
from others.
While neonatologists correctly place great weight on parental
authority, the parents’ right to decide for their child should not be
as absolute as their right to choose for themselves. For example, it
is generally acknowledged that competent adults have the right to
refuse lifesaving treatment for themselves, but not necessarily for
their child. Similarly, while they may have the right to choose for
themselves what some would consider an inhumane course of
treatment, they should not necessarily be allowed to make such a
choice for their child. Though parents generally have a right to
decide for the newborn, the physician has an obligation to ensure
that the treatment provided is not inhumane. In certain extreme
situations, it may indeed be inhumane to provide resuscitation and
ongoing intensive care. This is essentially a defense based on the
patient’s best interest, which will be discussed along with other
potential justifications for physician refusal, after consideration of
the data.
As noted, the purpose here is not to provide a thorough ethical
defense of the right to refuse (though that is clearly an important
question), but rather to consider how the physicians that claim
that right should determine the minimum gestational age, below
which it is appropriate to refuse a parental request for resuscitation.
That determination should be based on the outcome data, the
limitations of these data, and on the proposed ethical justification
for refusal, as outlined below.
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Physicians’ Refusal to Resuscitate at Borderline Gestational Age
OUTCOME DATA
UNCERTAINTY OF GESTATIONAL AGE
Lorenz reviewed the literature for infants born in tertiary centers in
the United States in the 1990s, and reported aggregate survival at
22 completed weeks of 10% (n ¼ 151), at 23 weeks of 28%
(n ¼ 490), and at 24 weeks of 51% (n ¼ 1295).4 Combined data
from the 14 centers of the National Institute of Child Health and
Human Development (NICHD) Neonatal Research Network for
1995 to 1996 show similar outcomes at 23 and 24 weeks. At 22
completed weeks, however, reported survival was 21% (n ¼ 56).5
Data from the United Kingdom (UK) and Ireland from 1995
indicate fewer survivors at the lowest gestational ages. Their
reported survival at 22 completed weeks was 2% (n ¼ 138), at 23
weeks was 11% (n ¼ 241), and at 24 weeks was 26% (n ¼ 382).6
Outcome considerations should include morbidity as well as
mortality, and the reported rates of morbidity for these tiniest
babies are quite high. The AAP Committee on Fetus and Newborn
summarized the available data for infants at the lowest gestational
ages by stating that ‘‘the incidence of moderate or severe
neurodevelopmental disability in surviving children assessed at the
age of 18 to 30 months is high (approximately 30 to 50%) and
does not appear to decrease over the 23- to 25-week gestation
period.’’2 There are no significant data available specifically for
survivors born at 22 weeks.
There are at least four points to be emphasized regarding these
data. First, they are already a decade old, and though still
referenced frequently today, may underestimate current survival at
the lowest gestational ages. At Yale-New Haven Children’s Hospital,
for example, survival at 23 weeks for 1994 through 2004 was 26%
(n ¼ 88), similar to that reported by the network, but for 2003 and
2004, survival increased to 38% (n ¼ 21). The second point relates
to the rate of survival at 22 weeks. Many maintain that it is not
possible for a child born under 23 weeks to survive, and refuse to
attempt resuscitation based on that assumption. Though these data
suggest that survival at 22 weeks remains unlikely, or very unlikely,
it does not seem valid to say it is impossible. The third point is the
variability in survival rate at the lowest gestational ages between
the US and the UK, and even among centers within the US. In
Lorenz’ review, reported survival at 22 weeks ranged from 0 to 21%,
and at 23 weeks from 5 to 46%.4 The final point is that these are
aggregate data for large numbers of newborns. For an individual
patient at borderline gestational age, there may be additional
antenatal information (e.g. trisomy 18, hypoplastic left heart
syndrome) that significantly worsens the prognosis, and thus might
influence a physician’s threshold for refusal.
There are, in addition, two important concerns regarding the
use of outcome data to decide whether to offer resuscitation: the
uncertainty of the true gestational age and the risk of self-fulfilling
prophecy. Each of these may potentially compromise honest
communication among physicians, and between physicians and
parents.
It is quite common for an obstetrician to describe the gestational
age for an impending delivery by using presumed accuracy to
within one day, such as ‘‘22 and 5/7 weeks.’’ The neonatologist
may subsequently describe the newborn the same way. As survival
statistics are typically reported in terms of completed weeks of
gestation, this patient would be categorized as 22 completed weeks.
The chances of survival, based on the data, would then seem at
best quite low, and in the hands of many centers appear to be zero.
However, there is an inherent (though likely unintended)
dishonesty in this communication.
Reporting gestational age with such precision sends the false
message that obstetrical dating is more accurate than is usually the
case. Magriples and Copel7 have observed, based on the available
obstetrical literature, that dating based on last menstrual period or
first trimester uterine size is accurate only to within about 2 weeks.
Similarly, second trimester ultrasound is accurate only to within 10
to 14 days. While in some cases better information is available (e.g.
first trimester ultrasound, in vitro fertilization), most often it is
not. Still, we often discuss gestational age down to the day, as if we
knew. A more honest communication might be: ‘‘based on LMP
and second trimester ultrasound, the fetus is between 21 and 24
weeks gestation.’’ Prognosis for survival, based on the same data,
now ranges anywhere from 0 to better than 50%. The prognosis
may be influenced by the estimated fetal weight, but this, too,
should be given as a range rather than a specific number. If we
wish to be honest with ourselves and with parents, we need in most
cases to think and speak in terms of ranges, despite the fact that
sometimes the range will be uncomfortably wide.
Similarly, a neonatologist might state that the baby was 23 weeks
by dates, but based on exam is more likely to be 22 weeks. There are
no available data suggesting that postnatally we can reliably assess
gestational age to within less than 2 weeks. This fact was illustrated
by a newborn encountered during my fellowship that looked like his
gestational age was substantially less than the expected 24 weeks:
fused eyelids, ‘‘transparent’’ skin, etc. The baby on the next warmer,
also born that same day, had open eyes and in general an exam
more typical of 24 weeks. One cannot say exactly what gestational
age either baby was, but as they were twins it was likely the same.
Fetuses, like children, mature at different rates. A neonatologist
cannot reliably say, based on exam, that a newborn is 22 rather
than 23 weeks, any more than a pediatrician can reliably say, based
on exam, that a child is 22 rather than 23 months old.
We need to admit to ourselves, to each other, and to parents that
in most cases we do not know a newborn’s exact gestational age. It
is worth noting that the cumulative outcome data on which we rely
were, for the most part, based on gestational age assessments with
a similar range of error. Perhaps the large numbers of the
cumulative data might narrow the error margin, but for the
individual patient at hand that cannot be the case. At the lowest
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Physicians’ Refusal to Resuscitate at Borderline Gestational Age
gestational ages, reporting gestational age to within one day
(rather than as a range) will in most cases send a false message
regarding our ability to accurately determine gestational age, and
hence send a false message regarding our ability to precisely apply
the published data to crucial decisions.
THE SELF-FULFILLING PROPHECY
A second important concern regarding the survival data is the risk
of self-fulfilling prophecy. A center that has never had a survivor
below a certain gestational age may deem it reasonable to refuse
resuscitation or any medical intervention below that age, as
survival appears extremely unlikely or impossible. Over time, they
will continue to have 0% survival, and the perceived justification
for refusal will persist. This reasoning is circular. We never try
because it never works. And, it might be that it never works because
we never try. While there may be valid reasons for refusing to
provide resuscitation and intensive care at 22 weeks, those who
justify refusal by noting that they never try because they have never
had a survivor, commit this lapse in logic.
Lorenz observed that variability in reported survival at 23 to 26
weeks increases with decreasing gestational age, due at least in part
to the increased variability with which obstetrical intervention for
fetal indications and neonatal intensive care is offered.4 That is,
outcome is more variable at 23 and 24 weeks because of the
variability in how hard different centers try to salvage those babies.
For example, at 23 weeks, reported survival ranged from 5 to 46%.
In the centers that reported greater than 40% survival, resuscitation
was attempted by an attending neonatologist in nearly all liveborn
infants, and intensive care initiated in all those who survived the
resuscitation. In contrast, in the UK, where survival at 23 weeks
was only 10%, nearly half of all deaths at 23 weeks occurred in the
delivery room, suggesting that a large fraction of those newborns
did not receive maximal obstetrical and pediatric efforts.6 The point
is not that a greater effort should have been provided, but rather
that reported outcome at the lowest gestational ages may be largely
dependent on the degree of effort put forth.
THE RELEVANT QUESTION
Parents considering resuscitation and intensive care for an infant
of borderline viability may ask about chances of survival. In
general, they will likely be told the survival statistics for their
hospital, or perhaps nationally. It may be informative for them to
know, for example, that 5% of all infants born at 23 weeks at that
hospital survive. The more relevant question, however, would be:
what percentage of those who receive maximal efforts survived? As
has been shown, that number could be dramatically different. It is
likely that most centers, aside from those that uniformly provide
maximal effort at 23 weeks, do not make that information known
to parents because they do not have that statistic readily available.
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Most parents, in any case, will probably not be savvy enough to ask
the more relevant question. Their failure to ask the question,
however, does not relieve the physician of the obligation to answer
it, or admit the answer is not known.
It is not just the parents who often fail to ask the more relevant
question, but the physicians as well. When trying to decide whether
it is reasonable to attempt resuscitation for a given gestational age,
we should be asking ourselves what our chance of success would
truly be. At the lowest gestational ages it may be significantly higher
than the percentages we typically quote, wherein the denominator is
expanded by cases where we did not attempt to save the fetus or the
baby. Though this is not intended as a recommendation for
resuscitation at 22 weeks, it is nevertheless worth asking: What
would be the rate of survival at 22 weeks if maximal efforts were
routinely provided? The honest answer is that we do not know.
ETHICAL JUSTIFICATION FOR PHYSICIAN REFUSAL
Three possible ethical justifications for refusal to resuscitate are
considered. The first, fairness to others, is not relevant to this
scenario, as will be shown. The second, futility, may be relevant in
extreme cases, but there is a risk of misuse of this argument. The
third, patient’s best interest, was briefly introduced at the outset of
the paper, and is the most tenable.
Fairness to others affected by the decision might include
consideration of society as a whole, which could incur a large
financial burden, for example, if the child survives but is severely
impaired. Some might argue that resources could be more fairly
allocated elsewhere. There is, however, currently no societal or
professional consensus that resuscitation or intensive care should
be denied newborns of borderline gestational age, in order to
provide more resources for others. Should a societal consensus at
some point become apparent, this argument might appropriately
influence resuscitation decisions. Until that time, it is inappropriate
for an individual physician to make such a decision at the bedside
on behalf of society.
Fairness to others could refer specifically to the patient’s family,
who might be significantly affected by the resuscitation,
particularly if the child survives and is severely disabled.8 Perhaps
survival of such a child would negatively impact the marriage,
family finances, and/or the lives of the siblings. Whether the
interests of the family can ever justify physician refusal is not
relevant to the question at hand, however, as the parents
themselves are requesting the resuscitation. The parents are
generally felt to be best qualified to consider and advocate for the
interests of the family. It would therefore not be appropriate for the
physician to base a refusal of their request on the family’s best
interest. The physician has an obligation to inform the parents
regarding the potential consequences of their choice, but is
generally not qualified to overrule their assessment of the family’s
interest.
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The second potential justification for refusal, and one often
invoked by physicians, is futility. While there has been significant
disagreement on the exact meaning of ‘‘futile’’ in a medical
context, it is perhaps best defined as meaning that the proposed
treatment has no reasonable chance of achieving the desired goal.
Of course, an assessment of futility then requires that the goal be
understood and agreed upon. In 2000, the AAP justified
noninitiation of resuscitation below 23 weeks by stating it is very
likely to result in nonsurvival or survival with severe disability.1
Assuming the goal is survival without severe disability, this is
essentially a justification based on futility.
There is widespread belief within the profession that futile
treatments should not be provided. Paris and Reardon9 rightly
observed over a decade ago that ‘‘physician refusal of requests for
futile or ineffective treatments is not an abandonment of the
patient; it is an assertion of professional responsibility,’’ and as
such the physician ‘‘ought not feel obligated to provide it.’’ In
addition to the justifications provided by Paris and others, this
point of view is also noted to be consistent with the physician’s
obligation to be truthful. That is, something seems inherently
dishonest in providing a treatment one believes cannot work. Even
if the physician says it cannot work, the attempt itself may send a
mixed (and potentially deceptive) message to the parents that it is
possible.10
There is by no means universal agreement regarding the use of
either the word ‘‘futile’’ or the concept when considering refusal to
resuscitate. Disagreements over definition, concerns about value
judgments masquerading as physiological facts, and other valid
points have been raised and debated at length.11,12 There is clearly
a danger that a physician might invoke the concept of futility when
the data are unclear, in order to avoid a difficult discussion or
conflict. One might say, ‘‘It is futile’’ when a more honest
statement would be, ‘‘I think it is a very bad idea.’’ The latter
carries an implicit admission that the statement is one of opinion
rather than fact, and as such requires more justification.
Despite these risks, and disagreements on exact definitions, it
seems reasonable to assert that if a treatment clearly cannot
accomplish the desired goal, physician refusal is justified. To argue
otherwise, for the question at hand, would be to argue that a
physician must attempt resuscitation even at 20 weeks or lower if
the parents insist. There must be a role for professional judgment.
Denial of that role would require physicians to serve purely as
technicians, responding to the orders of their patients regardless of
feasibility, suspending conscience and judgment. The result would
be a medical system few could endorse. For futility to serve as a
valid justification for refusal, however, it must be reasonably clear
that the requested treatment cannot accomplish the desired goal.
At our institution, we currently do not recommend resuscitation
at 22 weeks, but no longer justify blanket refusal at 22 weeks by
stating that a positive outcome would be impossible. While survival
(particularly intact survival) seems very unlikely, the reported
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Physicians’ Refusal to Resuscitate at Borderline Gestational Age
survivors at several different centers suggest it is not impossible.
More importantly, the chance of survival at 22 weeks if given
maximal effort (the relevant question) is simply not known. Also,
though one might extrapolate the morbidity data for infants born
at 23 to 25 weeks, it is not known if that assumption is valid.
Physician judgment and conscience, however, need not be
limited to questions of futility, but may be legitimately brought to
bear in consideration of the third possible ethical justification for
refusal, the patient’s best interest. While there has been much
debate regarding the use of futility as a justification to refuse, there
is relative agreement on the importance of acting in the patient’s
best interest. The AAP Committee on Bioethics Guidelines on
Forgoing Life-Sustaining Medical Treatment advises a presumption
in favor of treatment, and advises that parents should have ‘‘wide
discretion’’ in health care decisions. However, even their strong
endorsement of parental authority allows for physician judgment of
patient’s best interest: ‘‘Medical professionals should seek to
override family wishes only when those views clearly conflict with
the interests of the child.’’13
Best interests are generally assessed by a comparison of the
potential benefits and burdens of a proposed treatment. It may be
that those who crafted the above guidelines had in mind a family
that wishes to withhold a treatment the physician feels would be
beneficial to the patient. In such a setting, the physician is rightly
advised to ‘‘seek to override’’ the family’s choice and thus provide
the beneficial treatment. The same reasoning, however, should be
valid in the case of a family that requests provision of a treatment
that the physician feels would clearly be harmful to the child. In
both cases the physician should be permitted to ‘‘override’’ their
choice, based on an assessment of potential benefits and burdens to
the child.
The challenge to the physician, then, is to determine when
parental requests ‘‘clearly’’ conflict with the child’s interests.
Obviously this will call for subjective judgment. There will be times
when the parents’ wishes will be, to the physician, clearly
consistent with the interests of the child, and there will be no
conflict. There may also be times when parents request a treatment
for which the burden to the child clearly outweighs the benefits,
and it is for such cases that the AAP seems to endorse physician
refusal, and most physicians would likely agree. There is a third
category, an ‘‘ethical gray zone’’, where the child’s best interests
are unclear. Borderline gestational age may be one such example.
Is it worth undergoing resuscitation and intensive care for a
25% chance of survival? Or 10%? If the proposed treatment is long
and difficult, with a 10% chance of survival, and a 50% chance of
significant permanent disability, do the potential benefits to the
child outweigh the burdens? Physician refusal outside the gray
zone, when the requested therapy is clearly opposed to the child’s
best interest, is an appropriate exercise of professional
responsibility. However, in the gray zone, when the benefit/burden
assessment is unclear, it seems appropriate for the physician to
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Physicians’ Refusal to Resuscitate at Borderline Gestational Age
defer to the parents. This would also be consistent with the AAP
recommendation. The location of the gray zone, in this case a
gestational age range where the benefit/burden determination is
unclear, is itself subjective, and as such will vary among
physicians. Nevertheless, for most physicians there will be some
point beyond which the burdens clearly outweigh benefits, and
therefore an appropriate exercise of professional judgment will
mean refusal to initiate resuscitation.
CONCLUSION
Regarding treatment decisions for seriously ill newborns, Norman
Fost has observed that the debate is increasingly about infants
‘‘whose prospects are unavoidably ambiguous.’’14 Among our
professional obligations in these most difficult cases is the
obligation to be truthful about that ambiguity. We must be honest
with parents and with ourselves about the limitations of the
available information, and the potential for misinterpretation due
to uncertainty of gestational age and self-fulfilling prophecy.
Physician refusal to attempt resuscitation at some gestational
age is reasonable and defensible. However, as Paris has noted, the
potential for abuse of this right to refuse requires certain
safeguards, including the need that such decisions be based on
principle, rather than just medical consensus or prevailing
standards.15 In determining where the gestational age threshold
should lie, individual physicians and neonatology departments as a
group are encouraged to consider the ethical justification for their
refusal, with the inherent weaknesses of the data in mind.
Acknowledgements
The author is grateful to Steven Peterec MD for helpful comments and
suggestions.
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