The Best Interests Standard for

Incompetent or Incapacitated
Persons of All Ages
Loretta M. Kopelman

hen making decisions for adults lacking

decision-making capacity and having no
discernable preferences, widespread support exists for using the Best Interests Standard.1 For
example, the Presidents Council on Bioethics supports
this view in its publication, Taking Care: Ethical Caregiving in Our Aging Society.2 The Presidents Council
maintains that decision-makers should seek the best
available care for incapacitated adults, yet clarifies the
best care does not always extend biological life for the
longest time and advocates careful attention to comfort care and pain control. Their recommendations
for making medical decisions for incapacitated adults
match guidelines by American Academy of Pediatrics
(AAP) committees and by the U.K.s Nuffield Council
on Bioethics report for making medical decisions for
children and infants.3
For reasons of consistency, fairness, and compassion,
this guidance should be applied to all people lacking
decision-making capacity. Uniform guidelines, however, would be incompatible with a policy for infants
based on the Child Abuse Prevention and Treatment
Act (CAPTA)4 amendments, widely known as the
Baby Doe Rules.5 After analyzing the meanings of the
Best Interests Standard based upon the ways it is used
and defending it against common criticisms, I argue
that rules such as CAPTAs Baby Doe Rules should be
rejected in favor of the Best Interests Standard.

The Meanings of the Best Interests Standard

The Best Interests Standard should be understood as
an umbrella principle covering different kinds of usage.
First, it can be employed to express moral, legal, medical, or other social goals or ideals that should guide
choices, such as the goal to provide organ transplantations to every child who needs them. Second, it can
childhood obesity spring 2007

be used in making practical and reasonable decisions

about what should be done in a particular situation,
given the available (and usually less than ideal) options. For example, in some cases getting someone an
organ for transplantation would be ideal, yet this scarce
resource is unavailable and another choice would have
to be made.
Confusing these two fundamentally different uses of
the Best Interests Standard has lead to misguided criticisms. First, some critics argue that this standard requires someone to do what is ideal in all situations and
then conclude that what is ideal is unknowable, unattainable, unrealistic, or too narrowly focused on the incompetent or incapacitated persons interests.6 When
we consider how this standard is used to solve practical
problems, however, it does not require what is ideal but
what is reasonable. When the courts make custody decisions about the placement of a child, judges seek the
best available options; while their choices may be less
than ideal, hopefully they are better than minimally
acceptable.7 Viewing this standard as always requiring
what is ideal in making practical decisions not only
confuses its different meanings but also is divorced
from why it developed and how it is used.8
The Best Interests Standard was introduced to give
some standing to the interests of incompetent or incapacitated persons independent of their guardians
views.9 Earlier, they were often seen by society and
the courts as property of their guardians who had the
same authority to make choices for them as they did
for themselves, however wise or unfortunate those
choices may have been. With this standards introducLoretta M. Kopelman, Ph.D., is a professor at the Department of Medical Humanities at the Brody School of Medicine
in Greenville, NC.
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tion, however, persons lacking capacity gained legally

should use the best available information to assess
enforceable rights to a certain minimal threshold of
the incompetent or incapacitated persons immediate
care. The meaning of the Best Interests Standard in
and long-term interests and set as their prima facie
making practical decisions is tied to this usage and so
duty that option (or from among those options) that
does not require ignoring all other duties, allocation
maximizes the persons overall or long term benefits
plans for scarce resources, or others interests in decidand minimizes burdens. For example, clinicians might
ing what ought to be done for someone.
decide that it would be best if a child had a heart-lung
Second, some critics charge the Best Interests Stantransplantation, setting this surgery as their prima
dard is vague, open to abuse, or guides decision-makers
facie duty; but if that resource is unavailable, other
to do whatever they happen to think is best.10 Yet if we
choices must be pursued. Peoples options vary accordlook at why it developed and how it is used, its meaning to such things as their resources, duties, values, life
ing is clear (although there may be times it is hard
plans, and opportunities.
to apply). Typically, guardians have
legal authority to decide what is best
for their wards because they are preSome critics charge the Best Interests Standard is
sumed to have the greatest knowledge
vague, open to abuse, or guides decision-makers
about and interest in promoting their
wards well-being, and because the
to do whatever they happen to think is best.
guardians must deal with the consequences of the choices. Moreover, different guardians have somewhat different values, and
Decision-makers, in using the Best Interests Stanthese are important to them and to a society wishing to
dard, should have good information about the relevant
support the development of values within families.11
features of the situation. We generally agree about what
Nonetheless, decisions falling below acceptable
things are good, better or best in life; it is good to have
thresholds should be challenged for moral and legal
opportunities to flourish, prolong life, minimize pain
reasons. For example, if parents endanger their child
and suffering, have an open future, enjoy our lives, do
by refusing to authorize needed life-saving blood transwhat is socially beneficial, help our families, and so
fusions, doctors have a moral and legal duty to help the
on. These values, however, may conflict, and informed
child and notify the courts; the courts may then take
people of good will may sometimes rank potential bentemporary or permanent custody of the child. To do
efits and harms differently. A family wanting to pursue
this the state must prove, often by clear and convincing
every vanishingly small chance to preserve the life of a
evidence, that the child has suffered or is in danger of
relative might reach a different conclusion about what
suffering serious harm.12 Once the threshold has been
is best than a family that puts comfort care ahead of
met of showing that the child is in danger within the
preserving biological life as long as possible. The Presguardians care, the courts apply a second test that I
idents Council discusses why medical decision-makers
have argued can be couched in terms of the Best Inshould individualize their choices:
terests Standard because judges then should choose
the best available option for the child.13 In the next
Ultimately, caregivers must compare the burdens,
section, I will further clarify its meaning when used
consequences, and potential complications of the
to make practical or reasonable decisions, showing it
treatment itself against the burdens, consequences
is not unrealistic, unknowable, or vague, and it does
and potential complications of non-treatment; and
not permit decision-makers to do whatever they hapthey must compare the likely realities of life after
pen to think is best;14 rather, practical uses of the Best
treatment against the likely realities of life without
Interests Standard requires acceptable and reasonable
treatment.16 (Emphasis is in the original.)
choices grounded in a web of established duties to incompetent persons.
The less agreement about how to select options or assess harms and benefits, the harder it will be to apply
Practical Uses of the Best Interests Standard
the Best Interests Standard. The second necessary feaThe Best Interests Standard, when used to solve practure of the Best Interests Standard, when used in seektical problems, guides decision-makers to pick from
ing practical decisions, clarifies that it does not require
among options that reasonable persons of good will
all decision-makers to reach identical decisions about
would consider acceptable in similar circumstances;
what is best.
it will be analyzed in terms of three necessary and
Second, decision-makers should make choices for
jointly sufficient features. 15 First, decision-makers
the incompetent or incapacitated person that must at
188

journal of law, medicine & ethics

Loretta M. Kopelman

least meet a minimum threshold of acceptable care;

what is at least good enough is usually judged in relation to what reasonable and informed person of good
will regard to be acceptable were they in the persons
circumstances. Reasonable, impartial and informed
persons of good will, such as many judges, attorneys,
and clinicians, help set thresholds by their decisions
about what standards are good enough. This threshold condition emphasizes that guardians may make
different decisions about what they think is best unless
their choices are unreasonable or not good enough to
meet this threshold. For example, parents who think
it is best to use an unproven herbal therapy in place
of proven therapies to treat their childs cancer should
be challenged. This analysis supports the previously
discussed legal policy that if guardians decisions fall
below the threshold of acceptable care and endanger
the ward, the courts should take temporary or permanent custody to decide what is the best available
option.17 This action by the courts of seeking the best
available option for the person can be understood as
an application of this practical use of the Best Interests Standard.18 The weaker the consensuses about
what choices are unacceptable or not good enough,
the harder it is to use the Best Interests Standard.
Third, decision-makers should make choices compatible with moral and legal duties to incompetent or
incapacitated individuals. Appealing to general moral
and legal duties may sometimes offer important additional guidance. For example, suppose parents think it
would be best to enroll their three-year-old child in an
endocrinology study that will not directly benefit their
child and which involves a two-day hospital stay and
with several intravenous lines; the parents will receive
several hundred dollars upon completion of the study
and believe it will help teach their child empathy for a
sister who has an endocrine disease. Suppose too that
there is nothing in the current research guidelines to
forbid explicitly this financial arrangement and the
local institutional review board approved the study.
One might still argue from the vantage of other articulated moral or legal duties to children that such a study
should not be done since it has a variety of physical and
psychosocial risks of harm and too little evidence of any
compensating benefit to the child. The less clarity and
consistency about the moral and legal duties owed to
incompetent or incapacitated individuals, the harder it
is to apply the Best Interests Standard.
It follows from this analysis that the Best Interests
Standard can be used well or badly for a variety of reasons. First, the balancing of harms and benefits (the
first condition) might be done badly because of misinformation, conflicts of interest, bias, or prejudice. Second, judgments might be flawed because decision-makchildhood obesity spring 2007

ers misunderstand or misapply the consensus about

what choices are acceptable or because the threshold
itself may be unjustifiable (the second component). For
example, there may be disputes within a society about
whether some activities endanger children. Moreover,
in some parts of the world, there are widely held but
mistaken social views that endanger children, such as
notions that ritual burning is a good way to treat some
maladies. Third, decisions might be flawed because of
ignorance about or disputes over the nature, interpretation or ranking of peoples rights or duties (the third
component).
In our own society, we can see instances when
guardians and clinicians made bad decisions while
presumably thinking they were acting for the best. For
example, in the late 1960s a baby was born at Johns
Hopkins Hospital and became widely know as the
Hopkins Baby.19 The infant, diagnosed with trisomy
21 and a duodenal blockage, could not feed by mouth.
The parents refused surgery to correct the blockage,
and the clinicians accepted their decision. The baby
died. Clearly, this was not in the childs best interest
since many children with this condition live fulfilling
lives.
When the Best Interests Standard is seen in the context of its practical uses, it is, therefore, a mistake to
suppose that it permits whatever anyone wants it to
mean. This analysis that practical uses of the Best Interests Standard should incorporate what a reasonable
person would want or how a reasonable person would
balance burdens and benefits, is compatible with many
sources including judicial opinions, the Presidents
Council, and the Nuffield Council on Bioethics.20

Guidance from the Presidents Council

on Bioethics
In the last section we saw that using the Best Interests
Standard as a reasonable or practical guide requires
focusing on the particular situation to assess burdens
and benefits to people and the duties of others to them.
The Presidents Council writes, a great deal will always
depend on the clinical and personal particulars of each
case, and much of this cannot be fully anticipated in
advance.21 Elsewhere the Presidents Council recommends in the end, no legal instrument can substitute
for wise and loving choices, made on the spot, when the
precise treatment dilemma is clear and care decisions
are neededbut such planning should always aim at
providing the best care possible for the patient.22
Because the individuals circumstances and condition
should shape medical choices about what should be
done, Aristotle categorized medicine as an art rather
than a science.23 That is, medicine is an art because
clinicians should be skilled at applying medical and
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moral principles to individual cases, including helping

patients or surrogates reach judgments about what is
best for the particular patient.
Like Aristotle, the members of the Presidents Council stressed prudence and practical wisdom in making
medical decisions:
 prudence is that excellence of heart and mind

that enables us to see deeply and wisely into the

truth of things deeply enough to discern the
goods that are present, wisely enough to identify
the best means available for pursuing those goods,
without violating the norms of right and justice.as
we shall see, the obligation to seek the best possible
care hardly means there is an easy answer in every
case, or that there is a single best decision in every
situation.24
The Presidents Council offers an analysis of the Best
Interests Standard restricting it to a legal standard and
reserving best care for the moral standard.
 est interest: a legal standard of caregiving for inB
competent patients, defined by the courts in terms
of what a reasonable person would decide in the
same situation. A consideration of best interests
generally attempts to weigh the burdens and benefits of treatment to the patient in his present condition, when no clear preferences of the patient can
be determined.25
In contrast, the analysis that I have offered unites the
various meanings of this principle under one umbrella
to strengthen its role in providing moral, medical, social or other legal guidance.
As noted, the Presidents Council clarifies that the
Best Care or Best Interests Standard should be used
to find individualized and compassionate care with
adequate attention to relief of suffering. It acknowledges different options may be permissible in similar
circumstances. For example, the Presidents Council
discusses what should be done when a woman who
is entering the middle stages of Alzheimers disease
becomes confused and agitated when she is taken out
of her home; yet to live, she needs renal dialysis three
times a week at a center a considerable distance from
her home. The Presidents Council concludes that renal
dialysis is not required in her case and is optional even
though she will die quickly without it and might live
many years with it.
The Presidents Council states that the Best Care or
Best Interests Standard incorporates duties to do no
harm (nonmalificence), saying decision-makers betray patients if, even with the best of intentions, we
190

subject them to treatment that cannot benefit them

or that burden them. We abandon them if, even with
the best of intentions, we do not do what we can to
benefit the life they still have.26 They also clarify that
over-treatment can harm, especially when the patient
cannot understand that the pain or restraints involved
in treatment and that a persons lack of understanding
may lead them to forego certain treatments.
 ertain treatments that are not excessively burdenC
some for comprehending patients may be excessively burdensome for patients with dementia.
Dementia itself does not make the person less
worthy of treatment, but the complications created
by the persons lack of understanding often change
the judgment of how best to serve his well-being.27
(Emphasis is in the original.)
The Presidents Council points out that it would be
wrong, miserable and undignified to select a treatment involving long-term physical restraints treatment that necessarily treats the person as someone
trapped in a kind of medical servitude.28 Any policy
that failed to take the degree of suffering into account
would be harshly criticized by the Presidents Council. They write, Medicine, which is committed to cure
when possible, is also committed always to comfort
and always to care.29 The Best Care and Best Interests Standards should, argues the Presidents Council,
guide decision-makers to do what is reasonable and
prudent given the circumstances because simple rules
and blanket interpretations will not cut finely enough
for such individualized and compassionate choices.
 hese kinds of questions and more broadly, the
T
relationship between treatment and well-being for
persons with dementia can be considered only
in concrete cases, with due regard for both the
moral principles that should guide all care giving
decisions and the irreducible particularity of every
clinical situation.30
Two of the Presidents Councils final recommendations
stress that maintaining biological life as long as possible should not always be the highest goal.
 he goal of ethical care giving in a clinical setting
T
is not to extend the length or postpone the end of
a patients life as long as is medically possible, but
always to benefit the life the patient still has.31
 The clearest ethical grounds for foregoing life
sustaining treatment are an obligation to avoid inflicting treatments that are unduly burdensome to
the patient being treated and an obligation to avoid
journal of law, medicine & ethics

Loretta M. Kopelman

treatments that are not at all (or not any longer) efficacious in obtaining a desired end.32 (Emphasis is
in the original.)
I argue that these recommendations and principles
offered by the Presidents Council should be used to
guide decisions in the care of people of all ages, including infants. In the next sections, I will briefly review
the background of the CAPTA amendments, widely
know as the Baby Doe Rules, and argue that they are
incompatible with the Presidents Council and AAPs
recommendations for making decisions for incapacitated or incompetent persons.33

CAPTAs Baby Doe Rules

The so-called Baby Doe Rules34 are amendments to
CAPTA and set federal funding requirements for states
to receive grants.35 These regulations concern treatment of extremely ill, premature, or terminally ill infants under one year of age (see Table 1). They require
all infants to receive maximal treatment (including
all medications, feeding and hydration) unless in the
reasonable medical judgments of clinicians one of the
following exceptions is met:
1. The infant is chronically and irreversibly comatose;
2. Treatment would merely prolong dying, not be
effective in ameliorating or correcting all of the
infants lifethreatening conditions, or otherwise
be futile in terms of the survival of the infant; or
3. The provision of such treatment would be virtually futile in terms of the survival of the infant
and the treatment itself under such circumstances would be inhumane.36
Neonatologists and other pediatricians surveyed
shortly after these rules became effective responded
that they were unnecessary to defend the rights of imperiled infants, failed to offer adequate consideration
of the infants suffering, ignored parental rights, and
undercut clinicians duties to act in their childs best
interests.37 In responding to a hypothetical case, up to
a third of respondents perceived a conflict between obligations to act in the childs best interest and the legal
requirements under the Baby Doe Rules.38
The U. S. Supreme Court in Bowen vs. American
Hospital Association (AHA), et al.39 expressed similar
objections in its harsh criticism of an earlier but similar
set of Baby Doe Rules;40 they were based upon a Reagan Administration interpretation of a civil rights law,
specifically Section 504 of the Rehabilitation Act of
1973.41 The Bowen Court rejected the Reagan Administrations interpretation (that non-treatment can only
childhood obesity spring 2007

be justified if one of the three stated exceptions existed

and that otherwise non-treatment was discriminatory
and violated the infants civil rights). The Supreme
Court found that these rules interfered with parental
rights to decide what was in their infants best interests,
thwarted individualized choices, were unnecessary to
protect disabled infants rights, and were naive about
medical decision-making because the degree of disability is relevant to making good life-sustaining medical
treatment decisions. The Supreme Court concluded
that these rules represented an unjustifiable effort to
influence medical standards of care even though no
evidence of discrimination or discriminatory care was
given.42
As it became clear that the courts were rejecting this
interpretation of the civil rights law, the Reagan Administration adopted another strategy. Similar Baby
Doe Rules were added as funding requirements for
states to receive federal grants under CAPTA. Although
technically optional, most states adopted these rules.
The second or CAPTA set of Baby Doe Rules went
into effect in 1985 yet they were only recently interpreted by an appellate state court. Wisconsins Appellate Court reviewed the CAPTA amendments in Montalvo v. Borkovec.43 The case concerned an extremely
premature infant born at 23-week-three-day-old gestation, who was given maximal life-saving treatments.
The parents sued claiming that their permission for
Table 1
The current Baby Doe Rules were enacted in 1984 and
went into effect in 1985.They are funding requirements for
states to receive child abuse funds, regulated by the states
and technically optional. The key portion states:
[The withholding of medically indicated treatment is]
the failure to respond to the infants life-threatening conditions by providing treatment (including appropriate nutrition, hydration, and medication) which, in the treating physicians (or physicians) reasonable medical judgment, will
be most likely to be effective in ameliorating or correcting
all such conditions, except that the term does not include
the failure to provide treatment (other than appropriate
nutrition, hydration, or medication) to an infant when, in
the treating physicians (or physicians) reasonable medical judgment any of the following circumstances apply: (i)
The infant is chronically and irreversibly comatose; (ii) The
provision of such treatment would merely prolong dying,
not be effective in ameliorating or correcting all of the
infants life-threatening conditions, or otherwise be futile
in terms of the survival of the infant; or (iii) The provision
of such treatment would be virtually futile in terms of the
survival of the infant and the treatment itself under such
circumstances would be inhumane.71

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these interventions was not sufficiently informed. Such

infants are at the limit of viability and have considerable morbidity and mortality. AAP committees and the
Nuffield Council recommend discussions with families
about treatment options for such infants, including
comfort care rather than life-prolonging treatments.44
The Wisconsin Appellate Court, however, stated: The
implied choice of withholding treatment proposed by
the plaintiffs is exactly what CAPTA prohibits.45 This
court rule that a babys parents had no role in consenting for or refusing maximal treatment because the
child was not dying or comatose.
The Wisconsin Appellate Court in Montalvo interpreted the CAPTA Baby Doe rules in a way that shows
they conflict with the sort of individualized decisionmaking advocated by the Presidents Council,46 AAP
committees, and the Nuffield Council.47 This Courts
understanding exactly reflects the letter and spirit of
the drafters of both sets of Baby Doe Rules, namely of
President Reagan48 and his Attorney General Koop;49
it also mirrors the view of other advocates who claimed
the Baby Doe Rules were needed to stop individualized interpretations about what was best for infants.50
Despite such legal commentary from the Courts51
and statements from Reagan52 and Koop53 about the
intention and meaning of CAPTAs Baby Doe Rules,
some still claim that these rules are misunderstood and
permit individualized decisions; they argue that these
rules allow reasonable and appropriate choices, either
by mediation of an ethics committee or by more careful
reading of the exceptions.54 The first view is mistaken
because there is no provision for ethics committees
to set aside these rules any more than for clinicians,
parents, or state agencies (short of refusing the federal
funds). The second view is mistaken as well; while the
words reasonable medical care, appropriate, inhumane, or virtually futile appear in the text as they
claim (see Table 1), taken in context, they do not open
the doors of discretion beyond the three narrow exceptions. For example, the words reasonable medical
judgment appear but only to allow the application of
these three exceptions (see Table 1); they do not allow
parents and physicians to decide on their own what is
reasonable.55 As I have argued in detail elsewhere,
CAPTAs Baby Doe Rules limit clinician and parental
discretion to withhold or withdraw maximal life-saving treatments to the stated exceptions (the infant is
chronically and irreversibly comatose, treatment would
prolong dying, or treatment would be virtually futile in
terms of survival and for that reason inhumane).56

What Images Hold Us Captive?

Images can hold us captive in our thinking to such an
extent that they distort our reasoning. I believe that
192

may be true for some defenders of the Baby Doe Rules

who insist special rules for infants are needed. Arguably,
like Reagan and Koop, these defenders seem to believe
that parents and clinicians cannot be trusted to make
good decisions for disabled or imperiled infants. The
death of the Hopkins baby discussed earlier fuels such
suspicions. The death of another infant, also known as
Baby Doe, certainly did, leading the Reagan Administration to craft the rules that are informally named
after the infant. He was born with a tracheosophageal
fistula, trisomy 21, and other problems; his parents,
with the advice of some physicians, decided not to repair the fistula. The familys decision was supported by
the Indiana Courts. While an appeal was being made
to the U.S. Supreme Court, the baby died.
Either set of Baby Doe Rules, if followed, would
have saved these two infants lives, but so would the
Best Interests Standard, if properly used. The Best Interests Standard should be used to find a justifiable
and reasonable course of action. In neither case was
this done. Choices made for Baby Doe and the Hopkins
Baby were not good enough. The social consensus and
legal precedents that permitted these two decisions
were unjustified. Unwarranted views about people with
trisomy 21 changed and so did the consensus and legal
responses to such infants. Unequivocally such infants
would be treated today even if parents objected.

Compassion
The current tough cases in neonatal intensive care
units bear no resemblance to Baby Doe or the Hopkins Baby. Rather they are cases where clinicians
struggle with the different guidance given by CAPTAs
Baby Doe Rules and the Best Interests Standard. As
noted, shortly after the Baby Doe Rules went into
effect nearly a third of the neonatologists in reviewing
one case responded that the Baby Doe Rules would
lead them to act contrary to the infants best interest.57 Consider the following case where these CAPTAs
Baby Doe Rules and the Best Interests Standard offer
different guidance.
 ince birth, 10-month old X.D. who has a diagS
nosis of holoprosencaphaly has reacted only to
painful stimuli. X.D. is admitted to the hospital
with edema. He is found to have renal failure of
unknown cause. Doctors determine that his kidney
disease can be managed with renal dialysis but not
cured. Is it required, optional, or contra-indicated
given his underlying condition? Who should decide
what is best for this child?
Holoprosencaphaly is a disorder that arises from the
failure of the embryonic forebrain to divide correctly.
journal of law, medicine & ethics

Loretta M. Kopelman

Consequently, the double lobes of the cerebral hemisphere do not form properly. In the most severe cases,
there is a single lobe brain structure and most individuals with this condition die before birth. The spectrum
of severity exists depending on the extent to which
the lobes separate, ranging from most severe to near
normal, but all are mentally retarded. X.D. has a very
extreme form, and when he is conscious, he seems to
be in considerable pain from the treatments keeping
him alive.
Because X.D. is not dying, can survive with treatments, and is not in an irreversible coma, the Baby
Doe Rules would require maximal life-saving treatments. Yet there is evidence that this is not the choice
that most adults would want for themselves who face
a life of only uninterrupted pain-filled consciousness.58
Comfort care and relief of pain and suffering are of
primary importance to imperiled adults and most want

as well as recommendations by the AAP committees

and the Nuffield Council.64

Justice
CAPTAs Baby Doe rules single out one group of incompetent persons, infants under one year of age. Yet
as a matter of justice, unless some relevant difference
exists, similar cases should be treated similarly. Consequently, the policies for the old and the young should
be similar unless age alone is a relevant consideration.
First, some may argue that age is relevant because elderly patients are on a well-understood trajectory and
a mistake for them would not be a mistake of a lifetime; in contrast, a mistake in dealing with infants
might involve an entire lifetime. Yet there are some
cases where the trajectory and outcomes are equally
and entirely clear, such as the infant with severe holoprosencaphaly; so this does not identify a relevant dif-

A necessary condition of any judgment being a moral judgment is that one must
consistently treat others as you want to be treated. Consequently, unless adults
want a Baby Doe-type policy for themselves should they become incapacitated,
they should not mandate such restrictions for infants under one year of age.
individualized choices to be made by them or by their
representatives and clinicians.59 In contrast, CAPTAs
Baby Doe Rules, unlike the Best Care or Best Interests Standard, would not allow families and physicians
discretion to make comfort care primary unless the
person were dying or comatose.60
Many organizations, councils and committees recommend the prudence of permitting some flexibility;
they allow the withdrawing or withholding of maximal care for reasons other than those permitted in
the CAPTA amendments or Baby Doe rules.61 The
Presidents Council,62 for example, always permits consideration of pain and suffering; the CAPTA rules only
permit pain or suffering to be considered if the treatment would be virtually futile in terms of survival.63
The Presidents Councils defense of the Best Interests Standard encourages individual evaluations of the
burdens and benefits of treatment to the person and
rejects a one-rule-fits-all approach to medical decisionmaking. Using their principles and finding that life
for this child is only a burden, parents and clinicians
should have the option to decide it is in his best interest to make comfort care primary and not seek dialysis;
this would be consistent with the Presidents Councils
recommendation for the woman in the middle stages of
Alzheimers Disease needing dialysis discussed earlier

childhood obesity spring 2007

ference. Second, others may believe that special rules

are needed to protect infants because parents have not
fully bonded to them; they may cite particular cases
such as the Hopkins baby and Baby Doe. Yet there is
danger in basing policy on a few cases, especially those
from decades ago. Unjustifiable decisions can be found
for people of all ages. Moreover, medicine has changed
radically and interpretations of what is best for adults
have also changed with the intervening decades since
the Hopkins Baby and Baby Doe died. Asserting
that special rules are needed for infants because clinicians and parents disvalue disabled infants should
require heavy proof, not just anecdotes; yet no data is
offered for such sweeping conclusions.
Third, still others may argue that special rules are
needed because we have to take any chance, 1 in 100 or
even 1 in a 1,000 to save an infant. Yet if adults do not
accept such a policy for themselves, they should not
inflect it on infants. Adults usually want to choose for
themselves and if that is not possible, have their family
and clinician choose for them; they want flexibility and
good pain control rather than prolonging biological life
as long as possible.65
A necessary condition of any judgment being a moral
judgment is that one must consistently treat others as
you want to be treated. Consequently, unless adults

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want a Baby Doe-type policy for themselves should

they become incapacitated, they should not mandate
such restrictions for infants under one year of age.
CAPTAs Baby Doe Rules restrict the kind of prudent
decisions and particularized clinical judgment that are
recommended by the Presidents Council, the Nuffield
Council, APA committees, and other organizations.66
The Baby Doe Rules were judged by the Supreme
Court and the neonatologists as inflexible, giving too
little consideration to parental views and requiring
over-treatment.67 In contrast, the Presidents Council,
the Nuffield Council, and AAP committees recommend
that families and clinicians should be able to make
a prudent decision based upon the needs of the particular patient in the particular setting. Thus, CAPTAs
Baby Doe Rules violate a necessary condition of morally justifiable judgments by unfairly singling out one
group for rules others reject for themselves.

Conclusion
The meaning of the Best Interests Standard should
be analyzed in terms of how it is used and why it was
introduced. It is defended herein as an umbrella principle because it is used in so many ways in moral, legal,
medical, social, or other discourse. On the one hand, it
is used to express ideals and goals and on the other, to
find reasonable solutions to practical problems for incompetent or incapacitated persons having no discernable preferences.68 Considerable misunderstanding of
this standard has resulted from commentators who fail
to distinguish its various meanings and then claim it is
vague, self-defeating, unrealistic, or narrowly focused
on the needs of a single individual. I have argued that
its meaning is clear from its usage (although it may
sometimes be hard to apply) and offered an analysis of
its meaning when used as a standard seeking reasonable solutions to practical problems.
Unlike the Best Interests Standard, CAPTAs Baby
Doe Rules mandate inflexible one-size-fits-all guidance for infants under one year of age. These rules require maximal treatment unless the infant is in an irreversible coma, dying, or treatments would be virtually
futile in terms of survival and therefore inhumane (see
Table 1). In contrast, the Best Interests Standard permits, within socially sanctioned limits and established
rights and duties, individualized decision-making, including attention to such decisions as when to seek to
maintain biological life and when to seek comfort care.
This is the policy adults want for themselves and which
is compatible with many important recommendations
for persons facing end-of-life choices.69 For example,
the Presidents Council writes about the difficulty applying the best care standard:

194

 when patients who are suffering greatly are can

didates for treatments that might extend their life
especially when patients cannot choose for themselves and are entirely (or largely) in the hands of
their caregivers. There are no simple formulas to
guide us, no algorithms for calculating the relative
weights of benefits and harms. Seeking the best
care possible will always require wise and prudent judgment of the people on the spot: spouses
and children, guardians and friends, doctors and
nurses, social workers and hospice professionals.70
A test about how we should treat people is how we
want to be treated and whether we are unfairly singling
out one group for treatment we reject for ourselves.
If, as the Presidents Council states, the compassionate goal for imperiled and incapacitated adults should
not be merely extending biological life as long as possible but also consider the persons pain and suffering,
then the same policy should be applied to infants. If we
should foster compassionate and individualized decision-making by families and clinicians for older persons, then the same policy should be applied to infants.
Therefore, rules like CAPTAs Baby Doe Rules should
be rejected for infants under one year of age so that it
is clear that the Best Interests Standard is the proper
guidance principle for decision-makers to use for all
incompetent or incapacitated persons.
References

1. Presidents Council on Bioethics, Taking Care: Ethical Caregiving in Our Aging Society, presentation at the Presidents Council,
Washington D.C., 2005. (The Presidents Council recommends setting aside the once competent patients advanced directive if surrogates and clinicians judge that it is not in his or her best interest.
This stance engendered controversy among the commissioners. I
leave this dispute aside since it obviously does not arise for young
children.) K. Steinhauser, N. Christakis, E. Clipp, M. McNeilly,
L. McIntyre, and J. Tulsky, Factors Considered Important at the
End of Life by Patients, Family, Physicians, and Other Care Providers, JAMA 284, no. 19 (2000): 2476-2482; P. Singer, D. Martin,
and M. Kelner, Quality End-of-Life Care: Patients Perspectives,
JAMA 281, no. 2 (1999); 163-168; National Hospice Organization,
Standards of a Hospice Program of Care (Arlington, Virginia: National Hospice Organization, 1990); I. R. Byock, A. Caplan, and L.
Snyder, Beyond Symptom Management: Physician Roles and Responsibilities in Palliative Care in L. Snyder and T. E. Quill, eds.,
Physicians Guide to End-of-life Care (Philadelphia: American College of Physicians, American Society of Internal Medicine, 2001):
56-71; C. Faull, Y. Carter, L. Daniels, Handbook of Palliative Care,
2nd ed. (Malden, Massachusetts: Blackwell Publishing, 2005);
J. Lynn, J. Schuster, A. Kabcenell, Improving Care for the End of
Life: A Sourcebook for Health Care Managers and Clinicians (New
York: Oxford Press, 2000); D. Doyle, G. Hanks, N. Cherny, and K.
Calman, Oxford Textbook of Palliative Medicine, 3rd ed. (Oxford:
Oxford University Press, 2004): at Introduction, 1-4.
2. See Presidents Council on Bioethics, supra note 1.
3. W. Oh, L. Blackmon, and American Academy of Pediatrics Committee on Fetus and Newborn, The Initiation or Withdrawal of
Treatment for High-risk Newborns, Pediatrics 96, no. 2 (1995):
362-364; A. Kohram, E. Clayton, and American Academy of Pe-

journal of law, medicine & ethics

Loretta M. Kopelman
diatrics Committee on Bioethics, Guidelines on Foregoing LifeSustaining Medical Treatment, Pediatrics 93, no. 3 (1994): 532536; American Academy of Pediatrics, Committee on Bioethics,
Ethics in the Care of Critically Ill Infants and Children, Pediatrics
98, no. 1 (1996): 149-152; Nuffield Council on Bioethics, Critical
Care Decisions in Fetal and Neonatal Medicine: Ethical Issues,
London, November 2006, available at <http://www.nuffieldbioethics.org/fileLibrary/pdf/CCD_web_version_8_November.pdf>
(last visited January 10, 2006).
4. U.S. Child Abuse Prevention and Treatment Act, (CAPTA) Pub L
No. 42 USC 5101 et seq.
5. Nondiscrimination on the Basis of Handicap; Procedures and
Guidelines Relating to the Health Care for Handicapped Infants
HHS, Final Rules, Federal Register 50 (1985): 14879-14892.
(These amendments to CAPTA are known as the CAPTA OR
Baby Doe amendments.)
6. R. M. Veatch, Abandoning Informed Consent, Hastings Center
Report 25, no. 2 (1995): 5-12; W. Ruddick, Questions Parents
Should Resist, in L. M. Kopelman and J. C. Moskop, eds., Children and Health Care: Moral and Social Issues (Dordrecht: Kluwer Academic Publishers, 1989): at 221-230; J. Frader, Letter to
the editor in response to Kopelman, Are the 21-Year-Old Baby
Doe Rules Misunderstood or Mistaken? Pediatrics 116 (2005):
1601-1602.
7. H. D. Krause, Family Law in a Nutshell, 2nd ed. (St. Paul: West
Publishing Company, 1986).
8. L. M. Kopelman, The Best Interests Standard as Threshold, Ideal,
and Standard of Reasonableness, Journal of Medicine and Philosophy 22, no. 3 (1997): 271-289.
9. See Kraus, supra note 7.
10. See Frader supra note 6; R. Reagan, Abortion and the Conscience of the Nation in J. D. Butler and D. F. Walbert, eds.,
Abortion, Medicine and the Law, 3rd ed. (New York: Facts on
File, 1986): at 352-358; C. E. Koop, The Challenge of Definition,
Hasting Center Report 19, no. 1 (1989): 2-3.
11. A. E. Buchanan and D. W. Brock, Deciding for Others: The Ethics
of Surrogate Decision Making (Cambridge: Cambridge University Press, 1989).
12. See Kraus, supra note 7.
13. See Kopelman, supra note 8.
14. These critics include: Frader, supra note 10; Reagan, supra note
10; Koop, supra note 10; Veatch, supra note 6; Ruddick, supra
note 6.
15. L. M. Kopelman, Rejecting the Baby Doe Regulations and Defending a Negative Analysis of the Best Interests Standard,
Journal of Medicine and Philosophy 30 (2005): 346.
16. See Presidents Council on Bioethics, supra note 1, p. 176.
17. See Kraus, supra note 7.
18. See Kopelman, supra notes 8 and 15.
19. J. M. Gustafson, Mongolism, Parental Desires, and the Right to
Life, Perspectives in Biology and Medicine 17 (1973): at 529-530.
Reprinted in T. L. Beauchamp and J. F. Childress, eds., Principles
of Biomedical Ethics, 1st ed. (New York: Oxford University Press,
1979): at 267-268.
20. See T. E. Hafemeister and P. L. Hannaford, Overview of the
Decision-Making Process, Resolving Disputes for Life-Sustaining Treatment (Williamsburg: National Center for State Courts,
1996): at 15-20. They offer the following as frequently cited reasons given by the courts in deciding what is best in making medical decisions for an incompetent person: his or her diagnosis
and prognosis and other objective medical criteria, the persons
prognosis for suffering or enjoyment, and the likelihood that the
person will have a tolerable quality of life. They write, Often it is
an almost intuitive determination that requires an evaluation of
what a reasonable person in the patients situation would want.
They also write that in judicial opinions the best interest
incorporates what a reasonable person in the patients position
would want: at 19 and 19n. The Nuffield Council, see supra note
3, offers similar criteria; also see the Presidents Council, supra
note 1. This standard is used by the courts in other practical
situations that do not require what is ideal but reasonable. For
example, Krause, see supra note 7, discusses how it is used in

childhood obesity spring 2007

custody disputes. It has also been used to interpret the research

regulations such as in Grimes v. Kennedy Krieger Institute, Inc.
782 A. 2d 807, 366 Md. 20 (Court of Appeals of Maryland, 2001):
at 852-853; and T.D. v. N.Y. State Office of Mental Health, 228
A.D.2d 95 (Court 1996). The courts acknowledge both the importance of the Best Interests Standard and that it cannot require what is ideal for the children in pediatric studies since that
would have the effect of stopping research unless a case could be
made that it is beneficial to each child; the courts and regulatory
bodies allow non-therapeutic or no benefit studies that have
a low risk. For a further discussion of this, see the following:
L. M. Kopelman, Pediatric Research Regulations Under Legal
Scrutiny: Grimes Narrows Their Interpretation, Journal of Law,
Medicine & Ethics 30, no. 1 (2002): 38-49.
21. See Presidents Council on Bioethics, supra note 1, at 87.
22. See Presidents Council on Bioethics, supra note 1, at 56.
23. Aristotle, R. McKeon, ed. Nichomachean Ethics, Book 2, The
Basic Works of Aristotle, (New York: Randon House, 1941). Written 350 B.C.E. Existing rules about how we should treat others
must be applied to the individual case. Aristotles point is evident
today as we must apply moral, scientific, and legal principles to
individual cases. Moreover, our knowledge about how to treat
human diseases and disorders is based upon scientific methods
such as randomized clinical trial methodology that attempts to
eliminate individual nuisance variables such as peoples unique
circumstances, biological responses, behaviors, and preferences.
Yet these are the variables that should be considered in applying
the standards of care to the individual case.
24. See Presidents Council on Bioethics, supra note 1, at 120.
25. See Presidents Council on Bioethics, supra note 1, at 231.
26. See Presidents Council on Bioethics, supra note 1, at 116.
27. See Presidents Council on Bioethics, supra note 1, at 173.
28. See Presidents Council on Bioethics, supra note 1, at 182.
29. See Presidents Council on Bioethics, supra note 1, at 116.
30. See Presidents Council on Bioethics, supra note 1, at 177.
31. See Presidents Council on Bioethics, supra note 1, at 212.
32. See Presidents Council on Bioethics, supra note 1, at 213.
33. See Oh et al., supra note 3; Kohram et al., supra note 3; American Academy of Pediatrics, supra note 3.
34. See CAPTA or Baby Doe amendments, supra note 5. For a full
statement of this policy, see Table 1.
35. See CAPTA, supra note 4.
36. See CAPTA or Baby Doe amendments, supra note 5. For a full
statement of this policy, see Table 1.
37. L. M. Kopelman, A. E. Kopelman, and T. G. Irons, Neonatologists Judge the Baby Doe Regulations, New England Journal
of Medicine 318, no. 11 (1988): 677-683; L. M. Kopelman, A. E.
Kopelman, and T. G. Irons, Neonatologists, Pediatricians and
the Supreme Court Criticize the Baby Doe Regulations, in A. L.
Caplan, R. H. Blank, J. C. Merrick, eds., Compelled Compassion
(Totowa, NJ: Humana Press, 1992): at 237-266; L. M. Kopelman, Are the 21-Year-Old Baby Doe Rules Misunderstood or
Mistaken? Pediatrics 116 (2005): 1601-1602.
38. See two articles by Kopelman et al., supra note 37.
39. Bowen v. American Hospital Association, 106 S. Ct. 2101 (1986).
40. Nondiscrimination on the Basis of Handicap Relating to Health
Care for Handicapped InfantsHHS, Final Rules, Federal Register 49 (1984): 1622-1654.
41. U.S. Rehabilitation Act, Pub L No. 93-112, 29 USC 794.
42. See Bowen v. AHA, supra note 39.
43. M
 ontalvo v. Borkovec, WI App 147; 256 Wis. 2d 472; 647 N. W.
2d 413 (2002).
44. See Oh et al., supra note 3; Kohram et al., supra note 3; American Academy of Pediatrics, supra note 3; Nuffield Council, supra
note 3.
45. See Montalvo v. Borkovec, supra note 43.
46. See Presidents Council on Bioethics, supra note 1.
47. See Oh et al. supra note 3; Kohram et al., supra note 3; American Academy of Pediatrics, supra note 3; the Nuffield Council,
supra note 3.
48. See Reagan, supra note 10.
49. See Koop, supra note 10.

195

INDEPENDENT
50. T. H. Murray, The Final Anticlimactic Rule on Baby Doe,
Hastings Center Report 85, no. 15 (1985): 5-9; J. A. Robertson,
Extremely Prematurity and Parental Rights after Baby Doe,
Hasting Center Report 34, no. 4 (2004): 32-39.
51. See Bowen v. AHA, supra note 39; Montalvo, supra note 43.
52. See Reagan, supra note 10.
53. See Koop, supra note 10.
54. See American Academy of Pediatrics, supra note 3; Murray,
supra note 50; Robertson, supra note 50.
55. See Kopelman, supra notes 6, 8, and 15; see also two papers by
Kopelman et al., supra note 37.
56. See Kopelman, supra note 6, 8, and 15; See also two papers by
Kopelman et al., supra note 37.
57. See two papers by Kopelman et al., supra note 37.
58. See Presidents Council on Bioethics, supra note 1; Steinhauser
et al., supra note 1; Singer et al., supra note 1; Standards of a
Hospice Program of Care, supra note 1; Byock et al., supra note
1; Faull et al., supra note 1; Lynn et al., supra note 1; Doyle et al.,
supra note 1.
59. See Presidents Council on Bioethics, supra note 1; Steinhauser
et al., supra note1; Singer et al., supra note 1; Standards of a
Hospice Program of Care, supra note 1; Byock et al., supra note
1; Faull et al., supra note 1; Lynn et al., supra note 1; Doyle et al.,
supra note 1.
60. See CAPTA or Baby Doe amendments, supra note 5.
61. See Oh et al., supra note 3; Kohram et al., supra note 3; American
Academy of Pediatrics, supra note 3; Nuffield Council, supra note
3; Presidents Council on Bioethics, supra note 1; Steinhauser
et al., supra note 1; Singer et al., supra note 1; Standards of a
Hospice Program of Care, supra note 1; Byock et al., supra note
1; Faull et al., supra note 1; Lynn et al., supra note 1; Doyle et al.,
supra note 1.
62. See Presidents Council on Bioethics, supra note1.

196

63. See CAPTA or Baby Doe amendments, supra note 5.

64. See The Presidents Council on Bioethics, supra note 1, discussed
a series of cases to illustrate the principles that they articulated
at 182; Oh et al., supra note 3; Kohram et al., supra note 3;
American Academy of Pediatrics, supra note3; Nuffield Council,
supra note 3.
65. See Presidents Council on Bioethics, supra note 1; Steinhauser
et al., supra note 1; Singer et al., supra note 1; Standards of a
Hospice Program of Care, supra note 1; Byock et al., supra note
1; Faull et al., supra note 1; Lynn et al., supra note 1; Doyle et al.,
supra note 1.
66. See Oh et al., supra note 3; Kohram et al., supra note 3; American Academy of Pediatrics, supra note3; Nuffield Council, supra
note 3; Presidents Council on Bioethics, supra note 1; Steinhauser et al., supra note 1; Singer et al., supra note 1; Standards
of a Hospice Program of Care, supra note 1; Byock et al., supra
note 1; Faull et al., supra note 1; Lynn et al., supra note 1; Doyle
et al., supra note 1.
67. The Supreme Court in Bowen v. AHA so judged the first set of
rules and the neonatologists the second set. See the two papers
by Kopelman et al., supra note 27 for arguments that both sets of
Baby Doe Rules are substantially similar.
68. This analysis of the practical or reasonable person analysis
of the Best Interests Standard seems compatible with judicial
opinions. See for example Kraus, supra note 7 and Hafemeister
et al., supra note 20.
69. See Presidents Council on Bioethics, supra note 1; Steinhauser
et al., supra note 1; Singer et al., supra note 1; Standards of a
Hospice Program of Care, supra note 1; Byock et al., supra note
1; Faull et al., supra note 1; Lynn et al., supra note 1; Doyle et al.,
supra note 1.
70. See Presidents Council on Bioethics, supra note 1, p.147.
71. See CAPTA or Baby Doe amendments, supra note 5.

journal of law, medicine & ethics