CASENOTE: PERSONHOOD AND DEATH:
THE PROPER TREATMENT OF ANENCEPHALIC ORGAN
DONORS UNDER THE LAW:
J. Steven Justice
University of Cincinnati Law Review.
University of Cincinnati
62 U. Cin. L. Rev. 1227
Cultures can be judged in many ways, but eventually every nation in every age
must be judged by this test: How did it treat people?
Doctors informed Laura Campo and Justin Pearson during Laura's eighth month of
pregnancy that their child would be born with an invariably fatal birth defect
n2 Infants exhibiting this condition are born with only a brainstem and otherwise
lack a brain.
n3 After receiving the news of Baby Theresa's fatal birth defect and consulting
with physicians, Ms. Campo and Mr. Pearson decided to carry the pregnancy to
term and undergo a caesarean section because they expressly hoped that the
doctors would be able to transplant Baby Theresa's functioning organs to other
dying infants who had a chance to survive.
n4 The doctors believed that the caesarean section would cause less damage to
Baby Theresa's organs.
Theresa Ann Campo Pearson was born on March 21, 1992, and consistent with
anencephaly, the back of her skull and upper brain were entirely missing, leaving her
brainstem exposed to
[*1228] the air.
n6 The risk of infection was very high, so doctors wrapped her open skull in
n7 Baby Theresa's heart beat spontaneously, and she could breathe unassisted at
After her birth, the parents requested that the doctors declare Baby Theresa
legally dead for the purpose of organ transplantation, but they refused.
n9 The doctors were concerned that if they
"harvested" organs from a live infant, killing it in the process, they could incur civil
or criminal liability under the laws of Florida.
n10 Under Florida law, Baby Theresa would not be considered legally dead until her
heartbeat and respiration had ceased or her entire brain had ceased
n11 The baby's physicians and parents were also aware from similar cases that if
they waited to harvest Baby Theresa's organs until she was legally dead, the
organs would almost certainly be unusable.
Faced with this dilemma, the parents decided to file a petition in Florida's
Broward County Circuit Court asking for a judicial declaration that the
anencephalic infant was dead at birth so that her organs could be removed
n13 After hearing testimony
[*1229] and argument, Judge Estella Moriarty denied the request on the grounds that
section 382.009(1) of the Florida Statutes did not permit Baby Theresa to be
declared legally dead if the child's brainstem was functioning.
n15 The judge did hold, however, that doctors could remove the infant's nonvital
organs, but none were harvested.
The parents immediately appealed to the Fourth District Court of Appeals,
which upheld Judge Moriarty's ruling.
n17 The court agreed that Baby Theresa did not meet the legal definition of brain
n18 The parents then appealed to the Florida Supreme Court to take action in their
cause, but the Supreme Court refused to hear the
[*1230] case until the Fourth District Court of Appeals certified that the case was of
"compelling public interest."
n19 The Fourth District Court of Appeals did certify the case for immediate
resolution, and the Florida Supreme Court accepted jurisdiction to resolve this
case of first impression.
Baby Theresa survived only nine days after her birth.
n21 The cause of death was cardiac and respiratory failure.
n22 Although the brainstem has the capacity to control autonomic bodily functions
like respiration and heartbeat, this ability soon ends when the rest of the
brain is missing.
n23 When her vital organs began to fail, she was placed on a mechanical ventilator
to assist her breathing, but eventually doctors removed the ventilator, and she
died nineteen hours later.
The medical evidence in the record revealed that Baby Theresa was incapable of
developing any cognitive process and may have been unable to feel pain or
experience sensation due to the absence of the brain cortex.
n25 The Florida Supreme Court noted, however, that this conclusion was disputed.
After careful consideration of the matter, the Florida Supreme Court
unanimously concluded that it could find no basis to expand the common law to
anencephaly with death.
n27 The court held that Florida common law recognized the cardiopulmonary
definition of death, meaning that when a person's heart and breathing
irreversibly ceased, she was dead.
n28 The court also held that section 382.009 of the Florida Statutes created a
"whole-brain death" exception to the cardiopulmonary definition whenever artificial means were
maintaining the heart and breathing.
n29 A mechanical ventilator, however, was not sustaining Baby Theresa's life at
the times in question; therefore, the court used the cardiopulmonary standard
to determine the question of death.
n30 In light of her spontaneous heartbeat and respiration, the court held that she
was not dead under Florida common law and therefore any donation of her organs
would have been illegal.
n31 Thus, the Florida Supreme Court affirmed the result of the trial court, but it
did not agree with the trial court's determination that section 382.009 of the
Florida statutes, containing the
"whole-brain death" standard, applied in this case.
Baby Theresa's plight drew international attention because of the medical,
legal, and ethical issues involved.
n33 This was the first time a court in the United States had addressed the
question of whether anencephalic infants could be considered legally dead at
birth for purposes of organ donation.
n34 Not only were parents of
[*1232] anencephalic babies and parents whose infants needed organ transplants very
interested in the court's deliberation, but the case also captured the
attention of doctors, ethicists, lawyers, and virtually all people who became
acquainted with it. The case implicated practical questions regarding the
utility of anencephalic organ donors and the effect that the court's decision
might have on organ donations in general. Lawyers wondered how the court's
decision might affect the definition of death and the potential liability of
doctors who performed transplant procedures on anencephalic infants. Ethicists
wondered how society would prevent expansion of a special rule for anencephalic
infants to other people who lacked
"upper brain" capacity - for example, people in a persistent vegetative state, who might
also be declared dead so that their organs could be harvested for others in
Yet, for most observers the issue was much more basic. Here were sincere
parents, trying to find some meaning and consolation in the birth of their
deformed child, hoping to find that meaning through giving life to others.
Other parents, whose dying infants had a chance to live if they received that
needed organ transplant, longed for that rare opportunity. Finally, there was
Baby Theresa. Her innocent little body was hopelessly dying. We looked at the
lives and the pain, vicariously experiencing the dilemma through the actors,
and we wondered what was right, what was best.
This Casenote attempts to answer that question: Considering all of the factors
in Baby Theresa's case, did the Florida Supreme Court make the right decision?
As a background to the analysis, this Casenote describes the factors that the
court considered in making its
[*1233] decision: (1) the medical facts of
anencephaly; (2) the history of anencephalic infants as organ donors; (3) the current legal
definitions of death; and (4) the prior statutory attempts to equate
anencephaly with death. Next, the Casenote presents a brief synopsis of the court's
unanimous opinion. Finally, the Casenote discusses the court's decision in
light of the medical, legal, and ethical implications of anencephalic organ
This Casenote concludes that, in view of the many factors involved, the
Florida Supreme Court's decision represents a clear and safe policy regarding
the legal definition of death. Physicians need to discover better ways to
sustain anencephalic organ vitality until the brainstem dies. When this is
accomplished, doctors will be able to harvest much needed organs from
anencephalic infants congruent with current legal definitions of death, and
human dignity will be maintained.
II. The Ideological Arena
A. The Medical Facts of
1. Diagnosis, Etiology, and Prognosis
Anencephaly is medically defined as a congenital absence of a major portion of the brain,
skull, and scalp.
anencephaly, cranial tissue is exposed, uncovered by bone or skin.
n38 The process of deformation begins in the early weeks of gestation, and by ten
weeks, the process is sufficiently advanced to be characteristic.
Other neural structures, including the diencephalon, optic nerves, cerebellum,
brainstem, and spinal cord, can also be malformed in the anencephalic infant.
n40 Associated anomalies include low-set ears, flattened nasal bridge, and cleft
n41 Between thirteen
[*1234] and thirty-three percent of infants born with
anencephaly have defects of nonneural organs, which may complicate the care of the infant
and make the organs unsuitable for transplantation.
Doctors can diagnose
anencephaly in utero with a high degree of certainty.
n43 Maternal serum alpha-fetoprotein tests and high-resolution ultrasound tests
are both very reliable in the prenatal diagnosis of
anencephaly is detected in prenatal testing, the pregnancy is usually terminated, which
dramatically reduces the incidence of live-born infants with
The postnatal appearance of the anencephalic infant is unique, and doctors can
make the diagnosis with virtual certainty when all the following criteria are
"(1) A large portion of the skull is absent. (2) The scalp, which extends to the
margin of the bone, is absent over the skull defect. (3) Hemorrhagic, fibrotic
tissue is exposed because of defects in the skull and scalp. (4) Recognizable
cerebral hemispheres are absent."
Doctors have been unable to determine the precise cause of
n47 Geographic factors and maternal reproductive history influence the incidence
and possibly the causes of
Most anencephalic infants that are born alive die within a few days after
n49 In a 1990 Medical Task Force Study on
Anencephaly ("Medical Task Force"), the longest confirmed survival of an anencephalic infant was reported as two
n50 In most instances, cardiopulmonary arrest occurs before the brainstem ceases
[*1235] to function.
n51 Even doctors cannot say how long an anencephalic infant could survive if the
doctors administered standard neonatal intensive care.
n52 Some studies have shown that anencephalic infants who received maximal medical
support became more vigorous, and most survived at least one week with no
perceived loss of brainstem functions.
Because anencephalic infants lack a functional cerebral cortex, the Medical
Task Force concluded that they were permanently unconscious,
n54 but brainstem functions were present in varying degrees.
n55 In the past, many behaviors of newborns were attributed to cerebral activity.
Their presence, however, in anencephalic infants indicated their brainstem
n56 Furthermore, experience with adult cerebral lesions indicated to the Medical
Task Force that the suffering associated with pain was a cerebral
interpretation of the stimuli. Thus, they presumed that anencephalic infants
could not suffer.
2. Incidence and Need for Anencephalic Organs
Quoted rates of the incidence of
anencephaly in the United States vary from .3 to 7 per 1000 births.
n58 Assuming the conservative rate of .3 per 1000 births, 1050 anencephalic
infants are born per year in the United States.
n59 Approximately two-thirds of the anencephalic infants are stillborn.
n60 If prenatal screening and abortion are uniformly applied, then the incidence
of live-born anencephalic infants that could potentially serve as organ donors
would be less than 100 per year, and only a fraction of these would actually be
able to provide useable organs to benefit other dying patients.
Contrast the annual number of live-born anencephalic infants with the need for
pediatric organs. According to Dr. Mark I. Evans, professor of genetics at
Wayne State University, about 5,000 children need pediatric organ transplants
every year in the United States, but only about 1,200 to 1,300 get transplants.
n62 The others
[*1237] die waiting or are sustained on dialysis.
n63 Nationally, thirty to fifty percent of children under two years of age who are
registered to receive transplants die before an organ becomes available.
n64 The United Network for Organ Sharing compiled data from 1990 indicating that
573 children up to the age of five received organ transplants, and as of March
1992, the network had 121 infants under a year old waiting for transplants.
The emphasis on the possible use of anencephalic infants as organ donors is
heightened when one realizes that the only other significant source of organs
for children in need of transplants is victims of car accidents.
n66 Organs of children who die of serious diseases are not useable because they
are usually damaged, and adult organs are not suitable because they are too
n67 Although improvements in the organ procurement system could increase the
number of organs available for children, it is likely that pediatric organs
will remain a scarce medical resource.
B. The History of Anencephalic Infants as Organ Donors
Historically, transplant teams around the world have used four general
approaches to obtain organs from anencephalic infants.
n69 In the first protocol, doctors placed the anencephalic infant on maximal life
support systems, meaning mechanical ventilation, at birth, and the organs of
the infant were removed at the first optimal moment regardless of whether the
brainstem had irreversibly ceased to function or not.
n70 Under current state definitions of death, organ harvesting while the brainstem
is still functional would be illegal.
[*1238] In 1987, a German effort using this approach removed kidneys from two
anencephalic infants and successfully transplanted the kidneys into three
n72 After three years, reportedly all three recipients had functioning kidneys.
In the second protocol, doctors placed the anencephalic infant on maximal life
support systems at birth and observed the infant until the brainstem function
n74 Then organs were harvested for transplantation.
n75 Using this approach, doctors in the United States monitored six anencephalic
infants for a seven-day experiment, but only one lost all brainstem functions
within that time span.
[*1239] infant's organs were not removed or transplanted because of problems locating
an acceptable recipient.
In the third protocol, doctors gave the anencephalic infant standard (minimal)
care until the infant revealed signs of imminent death, and then doctors placed
the child on maximal life support systems and observed it to determine if its
brainstem functions had ceased.
n78 Under this approach, doctors in the United States monitored seven infants for
seven days, but only one lost all brainstem function.
n79 Again, organs were not transplanted because no suitable recipient was found.
In a variant of the third protocol, doctors gave the anencephalic infant
standard (minimal) care, meaning no mechanical ventilation, until the infant
developed cardiac arrest.
n81 At that point, the anencephalic was resuscitated, placed on maximal life
support systems, and observed to see if all brainstem functions had ceased.
In the fourth protocol, doctors rendered standard care to the anencephalic
infant until the infant died of cardiorespiratory arrest.
n83 Then, doctors removed the cadaver organs and used them for transplantation.
n84 Using this approach, anencephalic infants have served as the sources of
corneas, heart valves, and kidneys.
In a comprehensive review of the medical literature through 1990, the Medical
Task Force documented that eighty anencephalic infants had been involved in
transplant programs at twenty-five different institutions around the world.
n86 From these eighty infants, the Medical Task Force only discovered a total of
twelve successful transplant operations: eleven kidney operations, no liver
operations, and one heart operation.
After cross-referencing a survey of the techniques of organ removal from
anencephalic infants with the successful transplant operations, the Medical
Task Force determined that the only clearly successful approach was to place
anencephalic infants on maximal life support at birth and harvest their organs
as soon as technically possible, without regard to the presence of a
C. The Legal Definition of Death
Commentators clearly acknowledge the need for pediatric organs and the
potential for using anencephalic infants as organ donors.
n88 The focus of the medical and legal debate is how to use anencephalic organ
donors successfully and legally. Medical science has shown that the most
successful way to procure anencephalic organs for transplant is to harvest them
while the infant's brainstem is still alive.
n89 But is this approach legal?
Every state in the United States has adopted the Uniform Anatomical Gift Act
(UAGA), which states that organs for transplantation can only be removed from
n90 Thus, if
[*1241] the law defined an anencephalic infant with a functional brainstem as dead,
then no legal barrier would exist to the harvesting of anencephalic organs
under the most successful protocol. Current legal definitions of death,
however, do not include the anencephalic infant with a functional brainstem.
The traditional definition of death, followed by both the medical and legal
communities, was based on a cardiopulmonary standard: a person was considered
dead when the heartbeat and breathing irreversibly ceased.
n92 The common law espoused this standard, and it provided a clear guide for the
functioning of medical and legal societies.
The cardiopulmonary standard gives the impression that death is a definite
n94 In reality, however, death is not a point but a
[*1242] process, a disintegration of the cooperative systems that comprise the human
n95 The brain is the organ that integrates all the other bodily systems.
n96 Thus, when the brain ceases to function, the other bodily systems
n97 The organs that function in those systems become dysfunctional, and ultimately
the cells that form the structure of the organs break down to their constituent
Because the brain normally stays alive only as long as the heart and lungs
nourish it, the cardiopulmonary standard traditionally represented the point at
which medical science could not stop the death of the brain and the ultimate
disintegration of the human body.
n99 It was the point of no return. With the advent of mechanical respirators,
however, medical science rendered the cardiopulmonary standard inadequate to
"point" of death.
n100 New medical technology could sustain a person's circulation and respiration
even when the brain had irreversibly ceased to function.
In addition to the new technology, several related factors also raised the
awareness of concerned parties that a new definition of death was needed.
n102 Doctors were concerned about the need to render appropriate care to patients
whose brains had irreversibly ceased functioning; many felt it was more fitting
and respectful to remove artificial support when the patient had an
irreversible loss of brain function.
n103 Doctors were also concerned about the dedication of scarce and expensive
intensive care resources to people without brain function.
n104 Such treatment seemed to only prolong the grieving of families, and it
precluded patients who had reversible conditions from gaining access to
Organ transplantation, which began to develop in the 1950s and 60s, also
intensified the doctors' call for a new definition of death.
n106 Physicians knew that organs deteriorated quickly in the absence of respiration
n107 Therefore, the best candidates for
[*1243] organ donors were otherwise healthy people whose brains had ceased functioning
due to some kind of trauma but whose organs were kept vital through artificial
n108 Doctors needed a new definition of death that would allow them to declare
these patients dead while they were maintained on life support, thereby
providing suitable organs for transplant.
The new medical technology also raised many questions in the legal community.
n110 For instance, spouses of permanently comatose patients, who had irreversible
loss of brain function and were supported by artificial respiration, wanted to
collect death benefits from insurance companies that denied the benefits
because the patients were not dead under the cardiopulmonary standard.
n111 In the criminal context, a defendant, who had shot a victim in the head,
leaving the victim in an irreversible coma sustained by life support, sought
acquittal from the court on the theory that the doctor's removal of the victim
from artificial life support was the superseding cause of death.
The first important response to these and similar concerns that the new
medical technology raised was a report that an ad hoc committee of the Harvard
Medical School issued in 1968 that is now referred to as the
n113 This committee proposed that the cessation of brain function, what they called
"irreversible coma," was an adequate alternative to the cardiopulmonary standard for the
determination of death when artificial means were used to maintain heartbeat
n114 The report provided some criteria that would aid doctors in this
determination, but more was necessary to help the society at large.
In response to the fundamental social and legal questions that the new medical
technology was raising, commentators felt that the need for a new uniform law
n116 The result was the drafting of the Uniform Determination of Death Act (UDDA).
n117 Most states have now adopted by statute or case law a definition of death
identical or similar to the one in the UDDA.
n118 The UDDA provides that
"an individual who has sustained either (1) irreversible cessation of
circulatory and respiratory functions, or (2) irreversible cessation of all
functions of the entire brain, including the brainstem, is dead. A
determination of death must be made in accordance with accepted medical
n119 It is significant to note that the UDDA incorporates both the cardiopulmonary
standard from common law and a new whole brain standard to define death when
the patient is sustained on artificial life support.
[*1245] statute expressly includes the brainstem as a part of the whole brain death
n121 Thus, in the case of anencephalic infants who have artificial life support
maintaining their hearts and lungs, their brainstems must have irreversibly
ceased to function before doctors can declare them dead.
n122 If the anencephalic's heart and lungs are spontaneously functioning without
the aid of artificial support, then the cardiopulmonary prong of the UDDA will
determine the point of death.
n123 In either case, the Uniform Anatomical Gift Act will not allow doctors to
remove an anencephalic's organs for transplant until the infant is dead.
n124 Medical experience, however, has revealed that if doctors delay the harvesting
of anencephalic organs until the infants are legally dead, then the organs are
not suitable for transplant.
D. Unsuccessful Statutory Attempts
Because anencephalic transplant efforts were restricted by the legal
definition of death, some lawmakers decided that the best solution was to
change the law.
n126 This approach was attempted in California, New Jersey, and Florida.
In 1986, California state senators introduced a bill to amend the statutes
that represented California's adoption of the UDDA.
n127 The amendment defined
anencephaly and expressly declared that
"an individual born with the condition of
anencephaly is dead."
n128 The introduction of the bill created a great deal of controversy and
eventually led the sponsors to eliminate the proposed amendment.
n129 Instead, the legislature enacted an amended version of the
[*1246] proposal that required a state panel to examine the legal, medical, and
ethical considerations involved in the original proposal.
n130 The UDDA in California was not amended to equate
anencephaly with death.
A New Jersey lawmaker, Assemblyman Walter Kern, Jr., introduced a similar bill
in the New Jersey legislature in 1986 that would have permitted organ
procurement from anencephalic infants.
n132 Contrary to the proposed California bill, the New Jersey bill sought to
achieve the same result through amendment of New Jersey's version of the
Uniform Anatomical Gift Act (UAGA).
n133 While the UAGA mandates that doctors can only harvest organs for transplant
upon the death of the donor, the proposed amendment would have eliminated this
requirement in the case of anencephalics.
n134 This bill was tabled in committee.
In 1988, the Florida legislature discussed a bill that would have defined
death as inclusive of an infant born with
anencephaly, thus allowing for organ procurement from anencephalics who previously did not
meet death criteria, but this bill also did not get beyond committee.
n136 Thus, to this point no state has enacted law that would equate
anencephaly with death or allow for the removal of vital anencephalic organs prior to the
death of the infant.
III. The Florida Supreme Court's Opinion
In a unanimous decision, Justice Kogan, writing for the court, framed the
issue as whether an anencephalic newborn is considered dead for purposes of
organ donation solely by reason of its congenital deformity.
n137 The parents of Baby Theresa wanted the court to change the law in Florida,
either to declare anencephalic babies dead upon birth by virtue of their defect
or declare the babies dead when they stopped breathing on their own.
After delineating the facts and the procedural posture of the case, the court
described the medical characteristics of
anencephaly, based predominantly on a report by the Medical Task Force on
n139 Most notably, the court recognized the anatomical structures that define the
anencephaly and distinguish it from other congenital conditions.
n140 The court agreed with the doctors that Baby Theresa clearly met the diagnostic
Furthermore, the court accepted other reported findings of the Medical Task
Force regarding the survival rates and duration of anencephalics,
n142 the physiological consequences of the brain deformity,
n143 the ability of anencephalics to suffer pain,
n144 and the frequency of successful transplants from anencephalic donors.
n145 Finally, the court realized both the definite need for infant organs for
transplant and the general agreement that anencephalics have ceased to be
suitable organ donors by the time they meet the whole brain death standard.
After summarizing the medical facts of
anencephaly, the court began its legal analysis, describing the development of Florida's
legal definitions of death in contrast with those of other states.
n147 While many states had recognized the cardiopulmonary standard for death at
n148 Florida had never explicitly recognized any definition of death as a component
of its common law.
n149 Furthermore, although many states subsequently adopted the UDDA and others
enacted substantially the same language,
n150 Florida did neither.
Instead, the Florida legislature enacted a statute, section 382.009, that only
applied to the determination of death when artificial means sustained the
patient's life, thus not incorporating a cardiopulmonary standard.
n152 The statute allowed doctors to declare a person dead when the individual was
on artificial life-support and her whole brain, including the brainstem, had
ceased to function.
n153 The statute did not mandate that doctors make a declaration of death in those
circumstances, and the statute did not state that it promulgated the exclusive
standard for determining death.
n154 The court noted that the legislators' use of the permissive phrase
"may be determined" coupled with their later statement, in section 382.009(4), that this statute
"not the exclusive standard for determining death" clearly revealed that the legislature had envisioned other
[*1250] ways of defining death.
n155 Furthermore, the court concluded that this statute certainly would not apply
to an anencephalic infant whose heart and lungs were operating without the aid
of artificial life support.
The court next examined analogous areas of Florida law that might aid it in
determining a definition of death with regard to anencephalic infants.
n157 After examining the definitions of
n159 under Florida's Vital Statistics Act, the court determined that Baby Theresa
"live birth" and not a
Similarly, in cases alleging wrongful death under Florida tort law, the court
noted that fetuses were not recognized as
"persons" and were not
"born alive" until they had a separate and independent existence from the mother.
n161 By analogy, this evidence supported the conclusion that Baby Theresa was
"alive" because she had a separate existence from her mother's womb and was capable of
breathing and maintaining a heartbeat independent of her mother's after her
n162 The court emphasized that this law was only analogous and not dispositive of
the issue in this case.
Furthermore, the court recognized that in 1988 the Florida legislature
discussed a bill
n164 that would have defined death as inclusive of
anencephaly, but the bill did not get beyond committee.
[*1251] Therefore, the court concluded that as recently as 1988 no consensus existed
among the Florida legislators regarding the issue at hand.
After considering the potentially binding sources, the court concluded that
its research had not disclosed any federal or state law or case precedent that
was arguably on point or analogous to the issue in this case.
n167 In the absence of binding authority as to whether an anencephalic infant was
alive for purposes of organ donation, the court decided to broaden its
consideration and examine the public policy issues at stake.
Initially, the court clarified the status of the definition of death in
Florida law by adopting the cardiopulmonary standard as the common law
definition of death whenever section 382.009 was not applicable.
n169 If artificial life support sustained the patient, then section 382.009 would
govern the determination of death.
n170 Otherwise, a person who sustained irreversible cessation of circulatory and
respiratory functions would be considered dead, so long as the determination
was made in accordance with accepted medical standards.
Thus, the question became whether there was a strong public policy reason for
the court to create an additional common law standard applicable to
n172 The court stated that it could
[*1252] alter the common law, but that it did so only when public necessity demanded
it or when it was required to vindicate fundamental rights.
n173 After reviewing the medical, ethical, and legal literature on
anencephaly, the court concluded that no consensus existed on whether granting the parents'
request would better serve a public necessity or fundamental rights.
Regarding the presence of a public necessity, the court acknowledged much
n175 On one hand, the altruistic intent and compassion of the parents obviously
touched the court; but alternatively, the court faced medical literature that
revealed an unresolved controversy.
n176 Even medical specialists could not agree whether anencephalic organs could or
should be used in transplants.
While no one questioned the need for transplantable infant organs,
n178 the court found several other factors dispositive of whether the common law
definition of death should be altered to apply to anencephalics.
n179 First, some medical commentators argued that anencephalic organs were seldom
n180 Therefore, even if the law was changed, the number of possible organ
transplants from anencephalics would be so small that the enterprise would be
highly questionable in light of the significant ethical problems at stake.
n181 Second, other authors noted that prenatal screening is continuously reducing
the number of anencephalics born each year in the United States.
n182 Thus, as time passes, anencephalics are less likely to be a significant source
of infant organs.
n183 Third, some commentators frankly called for a moratorium on the redefinition
of death in this context until a consensus did emerge.
n184 Fourth, a presidential commission in 1981 called for strict adherence to the
definition of death delineated in the Uniform Determination of Death Act.
n185 This definition would preclude equating
anencephaly with death.
n186 Fifth, ethicists argued that treating anencephalics as dead made them
n187 This rationale heightened the concern of some ethicists regarding parallel
applications and expansions of the
[*1254] rule commonly referred to as
"slippery slope" problems.
n188 If the court determined that anencephalics were dead because they lacked
cortical brain function, then that same rationale might be applied to all other
persons who lacked cognitive capabilities.
n189 Some commentators purported that the slippery slope was quite real because
doctors had proposed transplants from infants with defects less severe than
The court did not articulate these factors to argue for the correctness of any
n191 Instead, the court wanted to reveal that no consensus existed regarding the
utility of anencephalic infants as organ donors, the ethical issues raised, or
the legal and constitutional problems implicated.
n192 Faced with no clear direction from the medical, ethical, or legal communities,
the court found no basis to expand the common law to equate
anencephaly with death.
n193 The consequences of a decision made in light of such an
"utter lack of consensus" outweighed the possibility of saving a few infants' lives using organ
transplants from anencephalics.
Because Baby Theresa's heart was beating and her lungs were breathing without
the aid of artificial life support when the family sought to donate her organs,
the Florida statute on the determina
[*1255] tion of death by the
"whole brain standard" did not apply to her case.
n195 The newly adopted cardiopulmonary definition, however, did apply, and under
that common law standard Baby Theresa was clearly not dead when organ
harvesting was considered.
n196 Therefore, any donation of her organs would have been illegal.
Justice Kogan closed the court's opinion by noting that although the trial
court reached the correct decision, its reliance on section 382.009 of the
Florida Statutes was inappropriate because artificial life support did not
sustain Baby Theresa's life at the times in question.
In T.A.C.P., the Florida Supreme Court faced an issue that attracted
international attention: Should
anencephaly be equated with death for purposes of organ donation?
n199 It was a case of first impression, not only in Florida, but also in the United
n200 The medical, legal, and academic communities, as well as society at large,
were interested in the decision of the court.
n201 The decision would not only have an effect on the use of anencephalics as
donors and the possibility of saving a few dying children's lives, but it would
also say something about how society values human life and what it means to be
Finding no precedent or persuasive analogue upon which to rely, the court
based its decision on public policy considerations.
n202 Obviously, the court sought a consensus opinion within the medical, ethical,
and legal communities that might indicate a public necessity to expand the
common law or point to the need to vindicate a fundamental right, but the court
found no consensus within any of
[*1256] these communities.
n203 Thus, it declined to expand the common law definition of death to equate
anencephaly with death.
To examine the validity of the court's conclusion, this discussion considers
the general arguments proffered in the medical, ethical, and legal communities
in relation to the use of anencephalic infants as organ donors. It examines the
issue through the court's eyes to determine whether it made the best decision
for all concerned.
A. The Medical Debate
Examination of the medical literature on
anencephaly reveals that commentators do agree on some issues. First, doctors have reached
consensus regarding the diagnostic criteria for
n205 The congenital deformity is clearly defined.
anencephaly is invariably fatal.
n207 Although most anencephalics are stillborn,
n208 the remaining infants usually die within a few days after birth.
n209 Third, many otherwise healthy infants and children are in need of
[*1257] transplantable pediatric organs.
n210 Finally, an extensive survey of the medical literature to date has confirmed
that the most successful protocol for procuring transplantable anencephalic
organs is to place the infant on maximal life support at birth and harvest the
needed organs as soon as it is technically feasible, disregarding the presence
of brainstem function.
n211 In other words, currently, the most successful transplant method involves
removing the organs from the anencephalic infant while it is still legally
Consensus in the medical community, however, ends here. Despite the general
agreement regarding all these factors, commentators are unable to find common
ground on the utility of anencephalic organ transplants.
n213 Dr. Alan Shewmon, from the Departments of Pediatrics and Neurology of the UCLA
Medical Center, estimates that given the annual rate of anencephalic births in
this country and the current state of transplant science, the annual number of
children who would actually benefit from anencephalic kidneys, hearts, and
livers is only 0, 9, and 2, respectively.
n214 While it is likely that these figures would increase as transplant techniques
improved, this gain would also be offset due to a decrease in the frequency of
n215 Less anencephalics will be born with the increased use of prenatal screening.
n216 These results will not make a significant difference to the annually estimated
5,000 children who need organ transplants
[*1258] in this nation alone.
n217 Notably, these estimates greatly influenced the court.
Opponents argue that the number of children who would benefit from
anencephalic donors could actually be much higher if the courts or the
legislature removed the legal strictures that prohibit organ procurement from
n219 A change in the legal climate itself would encourage more expectant mothers to
complete their pregnancies, thus potentially providing more anencephalic organs
n220 Less women would choose to abort their anencephalic fetuses after prenatal
detection if it was easier to give meaning to their infants' births through the
donation of their organs.
n221 Moreover, doctors could encourage their pregnant patients not to abort.
n222 Although proponents of using anencephalics as donors do not usually recommend
the use of financial incentives in this area, entrepreneurs have likely
considered the idea.
Those with possibly purer motives, who despise the idea of placing a price on
an anencephalic's body parts, argue in favor of the legal change from a
n224 The assertion is that the question of whether to use anencephalic donors is
one that decisionmakers should consider independent of the expected
quantitative benefits because the saving of even one life is a significant
This contention bites with admirable altruistic flavor, but the court had to
consider more than the medical possibility of saving a life. The potential
medical opportunities had to be balanced with
[*1259] the potential ethical costs on society at large of changing the accepted
definition of death with respect to anencephalic infants.
B. The Ethical Dilemmas
The T.A.C.P. court recognized the focus of the ethical debate in this area -
what it means to be a
n227 Some commentators argue against the attempt to declare anencephalics dead on
the basis of their congenital birth defect because such a declaration is
tantamount to calling them
n228 Proponents of such a declaration often view anencephalics as
"things" or, in the words of one author,
"forms of living human protoplasm" that can be used like
"a cutting from a living tree or ... a vegetable."
n229 Opponents argue that a problem arises when we take the next logical step. Once
we declare anencephalics to be nonpersons - dead for purposes of organ
transplantation by virtue of their brain defect - where will we, as a society,
draw the line between those who are considered
"persons" and those who are not?
n230 Some commentators are concerned that this is a slippery slope. Indeed, to make
such a declaration regarding anencephalics opens the door to all other people
who lack cognition for whatever reason.
The best way to understand this ethical debate is to recognize the underlying
presuppositions of either side. Those who oppose an expansion of the concept of
death to include live-born anencephalics see personhood as biologically based.
n232 All human beings are persons because of their unique morphology, their
classification as a member of the species homo sapiens.
n233 They do not lose their personhood because they are physically deficient in
n234 Thus, anencephalics like Baby Theresa are persons despite their physical
deficiencies and should be afforded the full rights of personhood, meaning
their death should be determined consistent with the standards employed for all
other human beings.
On the contrary, those who advocate a declaration that anencephalics are dead
at birth see personhood as nonbiologically based.
n236 Persons are a subset of humanity.
n237 Those human beings who possess particular attributes attain the status of
n238 Rationality, self-consciousness, futurity, and the capacity for desires about
one's future are some of the characteristics that commentators often mention as
sufficient conditions for the status of personhood.
n239 Thus, because anencephalics like Baby Theresa arguably lack cognitive
capabilities, their cerebral hemi
[*1261] spheres being absent, they are not persons and should not be afforded the
rights of persons.
Those who see personhood as biologically based argue that declaring
anencephalics dead at birth violates the infants' right to life and the high
valuation of human life that has been common in Western society for centuries,
namely, that persons are ends in their own right and are not to be treated as
means even to noble ends.
n241 Immanuel Kant articulated this idea in the form of his second categorical
"Act so that you treat humanity, whether in your own person or in that of
another, always as an end and never as a means only."
n242 Thus, if the court declared anencephalics dead at birth so that doctors could
harvest their organs for transplantation to save other dying children,
anencephalics would be treated solely as a means to an end, albeit noble,
violating the Kantian ethic.
Adherents of nonbiologically based understandings of personhood do not believe
that declaring anencephalics dead at birth and harvesting their organs for
transplant violates the Kantian ethic. They argue that the Kantian ethic only
applies to rights-holders, persons.
n243 They claim that when Kant spoke of persons he did not have in mind
n244 Thus, to apply his standard to anencephalic infants is beyond the scope of his
Moreover, these same commentators argue that if you accept the premise that
only sentient human beings are persons, then anencephalic infants have no
rights, including the right to life, because only persons have rights.
n246 A thing, nonsentient matter, does not have rights because it has no interests
n247 Thus, declaring anencephalic infants dead at birth and harvesting their organs
does not take away their right to life or violate the Kantian ethic because
under this view, the infant - as a nonperson - never possessed this right.
Those opposed to the view that anencephalics are nonpersons without a right to
life point out that this line of reasoning is premised upon the assumption that
anencephalic infants are nonsentient, a controverted issue.
n249 While the Medical Task Force declared that anencephalics were permanently
unconscious, Dr. Alan Shewmon and others strongly contend that this conclusion
is inherently unverifiable.
n250 They note, however, that what is known about the functional capacities of the
brainstem, particularly in newborns, raises doubt regarding this conclusion.
n251 In making the conclusion that anencephalics are permanently unconscious,
doctors have applied adult-derived neurophysiological principles to
n252 Animal studies have suggested that the phenomenon of developmental
neuroplasticity could, however, in the congenital absence of cerebral
hemispheres, allow brainstem structures to assume somewhat more complex brain
activity than would ordinarily be the case.
n253 Thus, it is possible that anencephalics could have some level of
consciousness, but to compare their mental abilities to decerebrate adults,
ignoring the neuroplasticity of newborns, is to make an unfair comparison.
n254 Anencephalics are neurologically much more similar to normal infants than to
n255 Even in normal newborns, the cerebral cortex is much less developed than the
brainstem, and the actual functional abilities of normal newborns and
anencephalics are quite similar.
n256 The difference between normal infants and anencephalics lies in their
potential for future cognitive development.
Arguably, therefore, if one affords the status of personhood to normal
newborns on the basis of their actual functional abilities, the same status
should be accorded to anencephalic infants. If one claims that normal newborns
have some level of consciousness, then the similar abilities of anencephalics
coupled with the phenomenon of neuroplasticity, call for the same declaration
regarding the consciousness of anencephalics.
Some who espouse a nonbiologically based understanding of personhood will
immediately respond that the personhood of normal newborns is not premised upon
their actual cognitive capabilities, but upon their potential for cognitive
development - a possibility that is lacking in anencephalics.
n258 Thus, the argument is that a normal newborn is a person now because she has
the potential to meet the full qualifications for personhood in the future. One
should question, however, the logic of attributing an identity to someone
because of her potential to qualify for that identity.
n259 I am not an attorney now because I have the potential to become one someday.
Some commentators that espouse a nonbiologically based view of personhood,
particularly those who also advocate the right to abortion, find the attempt to
base the rights of newborns on their potential for development quite
problematic. People who oppose the right to abortion commonly justify their
position on the potential that fetuses have for becoming cognizant human
n260 If personhood and its attendant rights are to be conferred on the basis of the
potential for development, then those who substantiate the personhood of normal
newborns based on their potential for development would contradict themselves
to say that normal unborn fetuses were not persons and could be aborted. These
normal fetuses obviously have the potential to develop as well as normal
To avoid this logical inconsistency, some who advocate a nonbiologically based
understanding of personhood and the right to abortion base the personhood of
the normal newborn on the interests that third parties, such as the newborn's
parents, have in the child's existence.
n261 This is not a sound line of reasoning either because once one looks beyond the
infant for the source of its rights - in this case, to the interests of the
parents - then the need to distinguish anencephalics from normal infants is
obviated. If the normal newborn has the right to life because of the interests
of third parties, then the anencephalic arguably has the same right if third
parties so desire.
Another objection of those who advocate a biologically based understanding of
personhood is that nonbiologically based classifications raise a slippery slope
n262 Once the concept of personhood is removed from the strictures of biological
structure, the question is where to draw the line between persons and nonper
n263 If the law is changed to declare anencephalics dead for purposes of organ
transplantation because they are nonpersons, then doctors, legislators, or the
courts could use the same rationale to declare others dead for the same
purposes, including persons in a persistent vegetative state and possibly
infants with other severe birth defects.
n264 Such an amendment might produce decreased respect for human life in other
Some theorists are concerned that the ambiguity surrounding a change in how
death is defined in the case of anencephalics could backfire on the transplant
movement in this country.
n266 The confusion could trigger public fears that, in addition to anencephalics,
organs are or will be taken from other humans that are not wholly brain dead.
n267 The result might be a decline in the number of overall organ donations,
thereby further reducing the potential gain in lives saved from the change in
Advocates of a nonbiological definition of personhood attempt to allay these
concerns by distinguishing anencephalics from people in a persistent vegetative
state. They argue that despite the state of permanent unconsciousness and the
loss of all cerebral functions, people in a persistent vegetative state should
be respected as persons because they once had a legitimate interest in
receiving care in the event they ever reached such a state.
n269 Anencephalics, the theorists argue, have no prior interests to protect.
n270 Furthermore, the Medical Task Force attempted to distinguish
anencephaly from a persistent vegetative state on the basis of medical criteria.
n271 Despite this effort, the Medical Task Force clearly stated that in both
[*1265] conditions the patients were in a permanent state of unconsciousness with a
loss of all cerebral cortical functions.
Moreover, proponents of the use of anencephalics as organ donors argue that
anencephaly is unique, and the diagnosis is clear.
n273 They argue that a change in the law to declare anencephalics dead at birth for
purposes of organ transplantation will not place other infants with defects
less severe than
anencephaly at risk.
n274 Some doctors have noted, however, that the slippery slope is quite real.
n275 Evidently, while Loma Linda University Medical Center was performing its
research on using anencephalic infants as organ donors, some physicians
contacted the hospital suggesting that the program enroll infants with less
severe defects than
A final problem that proponents of a nonbiologically based theory of
personhood face is that current definitions of death are congruent with and
expressive of a biologically based theory of personhood.
n277 The legal doctrine of live birth and the whole brain death standard seem to
reject the position that some forms of human existence are not equivalent with
n278 Furthermore, both the ABA and a 1981 presidential commission have urged
adherence to the UDDA's definition of death, which would preclude a
nonbiologically based definition of personhood and the subsequent equating of
anencephaly with death.
Perhaps the only clear conclusion evident in this parade of ethical arguments
is the same conclusion that the T.A.C.P. court drew: currently, there is no
ethical consensus concerning the use of anencephalic infants as organ donors
that would advocate a declaration that anencephalics are dead at birth.
n280 When the court com
[*1266] bined the lack of ethical consensus with the questionable medical utility of
anencephalic donors, even under the most successful protocol, the court
certainly did well to question the presence of a public necessity to equate
anencephaly with death.
The court appears to have relied predominantly on medical and ethical
arguments in reaching its conclusion not to expand the common law of Florida.
n281 Before it even considered these factors, it noted that it had found no binding
legal authority or legal analogy that was arguably on point to guide it in this
n282 The court also noted that it found no consensus regarding the legal or
constitutional problems that such a change in the common law would raise, and
it did not see fit to delineate what these problems might be.
n283 In the last portion of this discussion, this Casenote presents some of the
legal analogues that the court could have considered for guidance, and it will
reveal some of the potential legal/constitutional problems that a change in the
law might have implicated.
C. Legal Analogues and Constitutional Problems
1. Legal Analogues
After examining Florida's Vital Statistics Act,
n284 Florida tort law,
n285 a 1988 failed attempt of the Florida legislature to define death to include
n286 and other suggested analogous sources of law to find guidance,
n287 the Florida Supreme Court determined that no federal or Florida law or
precedent was on point or applicable by analogy to whether an anencephalic
infant was dead for purposes of organ donation because of its congenital
The most analogous case law has arisen in the context of involuntary bodily
intrusions. Normally, under the United States Constitution a person has the
right to bodily integrity.
n289 In the presence of some competing interests, however, courts have held that
[*1267] trusions such as compulsory vaccines
n290 and mandatory blood tests
n291 are permissible in proscribed circumstances. More significant bodily invasions
are usually not allowed without permission unless the intrusions are in the
defendant's best interests.
In the context of organ donation, only one court has faced the issue of
whether a person can be compelled against his own wishes to donate an organ
solely to benefit another. In McFall v. Shimp, thirty-nine-year-old Robert
McFall suffered from a fatal bone marrow disease.
n293 His only chance to survive was to receive a bone marrow transplant, but the
only compatible donor was his first cousin, David Shimp, who refused to donate
n294 McFall asked the court to compel Shimp to undergo the transplant, but the
court denied the request, basing its holding on the principles that our society
respects the individual and that society and government exist to protect the
individual from invasion and hurt by others.
In McFall, Shimp was an adult who could give or withhold his permission to
donate his tissue, but anencephalics are quite different because they are
unable to express such a desire and their infant
n296 or incompetent
n297 status would prevent the legal validity of such an assertion even if they
n298 Under these circumstances,
[*1268] some courts have allowed an incompetent to donate an organ to a member of the
immediate family if the parents or guardians so request and the donation is
arguably in the best interests of the incompetent.
n299 The courts usually made these determinations based on the substituted judgment
In Strunk v. Strunk, the Kentucky Court of Appeals held that a kidney could be
removed from Jerry Strunk, a twenty-seven-year-old incompetent person, and
transplanted into his twenty-eight-year-old brother, Tommy Strunk, who was
suffering from kidney disease.
n301 Jerry's I.Q. was equivalent to that of a six-year-old child.
n302 Jerry's mother petitioned the court to allow the organ donation because it
would not only be beneficial to Tommy but also to Jerry, who was very
psychologically dependent upon Tommy.
n303 The court agreed because it found, based on substantial evidence, that the
operative procedures were in the
"best interest" of Jerry.
Similar circumstances arose in Little v. Little.
n305 Anne Little was a fourteen-year-old incompetent child with Down's Syndrome.
[*1269] Her mother, Margaret Little, petitioned the Texas Court of Civil Appeals to
allow the removal of a kidney from Anne's body for transplant into Anne's
younger brother, who suffered from endstage renal disease.
n307 The court recognized that parents could consent to surgical treatments upon
the person of their minor, but the power to consent was limited to medical
n308 The removal of Anne's kidney was certainly not treatment for her illness.
n309 Relying on Strunk, however, the court held that there was strong evidence that
Anne would receive substantial psychological benefits from donating her kidney
to her brother, and it authorized the procedure.
Contrary to these decisions, other courts have refused to authorize
transplants from incompetent donors. In the case of In re Guardianship of
Pescinski, Janice Pescinski Lausier, sister and guardian of her incompetent
brother, Richard Pescinski, who had been committed to the state hospital for
catatonic schizophrenia, petitioned the court for permission to remove a kidney
from Richard for transplant to his sister, Elaine Jeske.
n311 Elaine had both of her kidneys removed due to kidney disease, and she needed a
n312 The court denied the petition, refusing to adopt the substituted judgment
n313 The court concluded that an incompetent should have his own interests
protected, and in the absence of real consent on his part, where no party has
established any benefit to him, the court did not have authority to approve the
A Louisiana court faced the same issue in In re Richardson.
n315 Roy Richardson was a seventeen-year-old incompetent who suffered from
n316 His sister Beverly, thirty-two years of age, suffered from inflammation of the
kidneys, and doctors recommended
[*1270] a kidney transplant.
n317 Roy's parents petitioned the court to allow doctors to remove one of Roy's
kidneys for donation to Beverly; the court denied the petition, concluding that
the surgical intrusion and loss of a kidney would not be in Roy's best
n318 Thus, neither his parents nor the courts could authorize the transplant
Therefore some case law, albeit controverted in other jurisdictions, has
supported the conclusion that doctors can remove organs from incompetent donors
for transplantation if the parents consent, the donee is an immediate family
member, and the facts support the conclusion that the donor could benefit from
the donation in some realistic way. An important common denominator, however,
in each of these cases seriously hinders the utility of applying this legal
analogy to anencephalic infant donors. In none of these cases was the surgical
removal of the needed organ life threatening.
Applying this line of legal reasoning to incompetent anencephalic donors, a
court could allow doctors to harvest only nonvital anencephalic organs for
transplantation while the infant is still legally alive. Even nonvital organs
could be removed only if the parents of the anencephalic infant consented, if
the donee was an immediate family member, and if the organ donation was
realistically beneficial to the anencephalic donor. If all of those conditions
were met, only then could the court exercise its substituted judgment and
permit the removal of nonvital organs.
In Baby Theresa's case, Broward County Circuit Judge Estella Moriarty
essentially reached this conclusion.
n321 She ruled that Baby Theresa's nonvital organs could be transplanted while the
[*1271] still alive, which meant that one kidney could be removed. She did not require
that the donee be an immediate family member.
n322 The difficulty, however, is that one kidney from an anencephalic infant is so
small that the recipient could be no older than about six months.
n323 At the time of Baby Theresa's life, there were only five patients that young
in the United States that were on dialysis, and none of them was a good tissue
n324 Baby Theresa's case illustrates the serious utility problems caused by
limiting anencephalic donation to nonvital organs. While the donation of an
anencephalic kidney is legally possible, a successful transplantation would be
Recognizing this legal context and the medical facts of
anencephaly, Baby Theresa's parents knew that the only means to increase the potential
benefit of an organ donation by Baby Theresa and other anencephalic infants was
to ask the court to equate
anencephaly with death so that doctors could harvest her heart, liver, and kidneys while
the organs were still viable. No other legal strategy held statistical promise
for successful transplantation. But on the basis of extant case law, the
Florida Supreme Court found no precedent that would arguably allow them to
declare live incompetents, like anencephalics, dead for the purposes of organ
n325 Their legal conclusion was correct.
2. Constitutional Problems
The Florida Supreme Court realized that a decision to equate
anencephaly with death would implicate constitutional problems, and a lack of consensus
regarding these problems was a salient factor in their ultimate decision.
n326 Although the court did not provide examples or argumentation to elucidate
which constitutional problems were implicated, a brief consideration of the
most significant potential constitutional problem may help the reader foresee
other legal barriers that future proponents of equating
anencephaly with death may face. Any attempt to change the status of anencephalic infants
through an amendment of a state's definition of death will certainly implicate
constitutional due process issues. Because life is a substantive right of every
person, the relevant in
[*1272] quiry in this case involves substantive due process, a concept grounded in the
Fourteenth Amendment as applied to the states.
The Fourteenth Amendment of the United States Constitution provides that no
"State shall deprive any person of life, liberty, or property, without due
process of law; nor deny to any person within its jurisdiction the equal
protection of the laws."
n328 Should a state legislature change the laws, equating
anencephaly with death, opponents of the change could claim that an anencephalic infant's
substantive due process right to life was violated by such a court ruling or
n329 Proponents of the change could counter that as dead people, anencephalics
would not be
"persons" under the Fourteenth Amendment.
n330 Thus, the state's power to structure the definition of death would directly
implicate the power to determine who is a person for constitutional purposes.
n331 Yet, this is simply an exercise in circular reasoning, and it assumes that a
state has the power to make this constitutional determination.
In Doe v. Israel, a federal court noted that a state, in this case Rhode
Island, did not have the power to determine what is a
"person" within the meaning of the Fourteenth Amendment.
n332 The court held that such a question was purely one of law for the courts,
independent of any power in the state legislature.
n333 In fact, the court contended that the United States Supreme Court had always
given content to the term
"person" under the Fourteenth Amendment.
In Doe, the intervenors argued that some Supreme Court decisions indicated
that the Court had looked to state definitions of
"property" in construing that term under the Fourteenth Amendment.
n335 Thus, if the Court accepted state law understandings of
"property" in construing the Fourteenth Amendment, why not accept state law
"person." In Doe, however, the court argued that the intervenors missed the point.
n336 The Supreme Court may have looked to what state law understandings indicated
regarding property, but it exercised an ultimate, independent judgment about
"property" is property for purposes of constitutional protection.
n337 Furthermore, the court in Doe noted that while the states had traditionally
established a network of property and contract rights, they had not done so as
to life, liberty, or person.
Thus, the Supreme Court has little reason to accept or give serious weight to
varying state versions of the concept of personhood or the right to life.
n339 Arguably, though, if the Court did look to state definitions of death and case
law construing determinations of
[*1274] death, it would find no state law that would declare anencephalic infants as
dead or nonpersons by virtue of their congenital deformity.
Nonetheless, the question still remains: What analysis would the Supreme Court
utilize to define the meaning of
"person" in the Fourteenth Amendment?
n341 The constitutional literature is curiously silent on the issue.
n342 In Roe v. Wade, the Supreme Court briefly considered the issue of personhood
as it related to fetuses.
n343 The conclusion of the Court that fetuses were not persons under the Fourteenth
Amendment was based on a finding that abortion statutes at the time of the
Amendment's adoption were liberal, meaning that the Framers probably did not
intend the term person to include the unborn.
n344 The Court possibly could reach the same conclusion regarding anencephalics.
Some evidence exists that the common law did not regard seriously defective
"monsters," as persons entitled to the protection of the law against homicide.
n345 By the time of the Fourteenth Amendment's adoption in 1868, however, some
jurisdictions no longer adhered to that position.
n346 Thus, evidence of the Framers' possible intent regarding the personhood of
seriously defective infants is not clear.
Some argue that in those jurisdictions who by 1868 had decided to attach
personhood at the point of birth, meaning emergence from the mother with some
biological function, the competing interests that shaped the choice to define
personhood in this way were not the same as those that surround the debate
today regarding the status of anencephalics.
n347 In those days, the choice of
"birth equals personhood" was made to protect newborns from those who might kill them or behave
negligently toward them.
n348 These theorists argue that if organ transplant technology had been available
in the mid-nineteenth century, the legislatures might have balanced the
interests regarding defective newborns like anencephalics differently,
[*1275] leading to a different definition of personhood.
n349 Arguably, however, even if one includes transplant technology as a factor for
consideration, the interest in equating
anencephaly with death is not different in result for the infant than the interest in
being free to kill a newborn. Thus, I conjecture that those jurisdictions that
afforded personhood at the point of birth in 1868 would likely have done so
even in the face of modern transplant technology.
Faced with an uncertain intent on the part of the Framers of the Fourteenth
Amendment, the Court is likely to look for guidance from basic intrinsic human
rights as they have been understood in this nation's history and tradition.
n350 The Court will find generally uniform state definitions of death, all of which
are based on a biological understanding of personhood, i.e., all human beings
n351 In the absence of a clear sense of the Framers' intent, this would have to
weigh heavily in the Court's determination of what is a
"person" for purposes of the Fourteenth Amendment. The Court would likely adopt a
biologically based understanding of personhood. Thus, even anencephalic infants
would be considered persons under the Fourteenth Amendment, persons who have a
fundamental right to life. Because life is a fundamental right, any state
legislature that acted to controvert that right, equating death with
anencephaly, would be subjected to the strictest scrutiny of the Court.
n352 The Court would hold this state action unconstitutional because it would
violate a fundamental right guaranteed by the Constitution. Compelling
necessity does not motivate this kind of state action, and the state could use
less intrusive means to accomplish the same goal by funding research that would
discover means to maintain anencephalic organ vitality until the infant's
Opponents of a state's efforts to equate
anencephaly with death could also raise an equal protection challenge to the statute.
[*1276] ponents could base their challenge on the Fourteenth Amendment, claiming that
the state's action did not afford equal protection of the laws to anencephalic
infants. The success or failure of such a challenge, however, would obviously
hinge on the same line of reasoning pursued in a substantive due process
challenge. If the anencephalic infant is a person, then a law that declares her
dead by virtue of her deformity obviously denies her the protection of the
right to live that is afforded to every other person. Even if a state has a
compelling interest in enhancing the pool of pediatric organs for
transplantation to its dying infants, no court would permit the achievement of
that interest at the expense of the life of another person. If the anencephalic
infant is not a person, however, then it has no right to equal protection of
the laws under the Fourteenth Amendment, and no equal protection challenge
In T.A.C.P., the Supreme Court of Florida rendered a well-considered,
conservative decision that upheld the dignity of all human beings. While the
court did not declare any opinions on the issues it discussed, right or wrong,
it did clearly elucidate the lack of consensus regarding the medical utility of
using anencephalic donors and the ethical issues involved.
n355 In the absence of consensus, the court correctly concluded that it had no
public necessity basis upon which to expand the common law of Florida to equate
anencephaly with death.
n356 In essence, it refused to embrace a nonbiologically based understanding of
personhood and thereby maintained the innate dignity and bodily integrity of
all human beings.
Besides the precedent-setting nature of this decision, T.A.C.P. is important
because it addressed the current state of this issue in three different
communities: medical, ethical, and legal.
n357 Spurred by the news of a successful heart transplant in 1987 from an
artificially sustained anencephalic infant, Baby Gabrielle, who had been
declared brain-dead in London, Ontario, to another child at Loma Linda
University in the United States, the interest in the potential use of
anencephalic infants as donors grew quickly.
n358 Yet, experimentation soon proved that success was far more the exception than
[*1277] the norm.
n359 Interestingly, T.A.C.P. arose after the fervor had subsided, almost as a final
effort to determine whether the court would remove the legal barriers to,
arguably, the only transplant protocol using anencephalic donors that offered
some potential for regular success.
n360 The court's decision, coming on the heels of the previous ideological fervor,
revealed not only the current absence of consensus among any of the interested
communities, but it also raised the suspicion that consensus might not be
In view of these considerations, no transplant centers in the United States
are now using anencephalic infants as organ donors, or even contemplating it.
n361 They have declared an informal moratorium in the area.
n362 In London, Ontario, however, the transplant group is contemplating starting
anencephalic organ donation again on a limited scale.
n363 Organ donation would only be allowed after whole brain death had occurred,
congruent with current death standards in the United States.
While this approach has hardly yielded successful results in the past, it does
have advantages over no experimentation. First, occasionally, an anencephalic
infant will suffer whole brain death within a reasonable time after birth to
allow doctors to harvest a viable organ for transplantation. The successful
heart transplant from Baby Gabriel in 1987 occurred in this manner.
n365 If the transplant programs are not functioning, even these organs will be lost
and potential recipients will needlessly die.
Second, using a protocol that complies with the whole brain death standard
will avoid the slippery slope ethical problems. It will not risk generally
losing public confidence in transplant programs.
Third, in order to procure transplantable organs and comply with the UDDA
standards, doctors will have to place most anencephalic
[*1278] infants on mechanical ventilation at birth. While this, too, possibly violates
the Kantian ethic not to use a person as a means to an end, it appears to
approach a better balance of all the interests involved if coupled with a
reasonable time limit.
n366 Both deontological
n367 and utilitarian
n368 ethics support this approach. Use of a ventilator for a predefined length of
time does prolong the dying process of the anencephalic or extend its life,
depending on your perspective, but it also allows the infant to die of its own
accord. In contrast, equating
anencephaly with death allows a doctor to intervene and cause death through the harvesting
Finally, the existence of anencephalic transplant programs will serve as an
incentive to develop new drugs and new techniques to maintain organ vitality
until the anencephalic infant succumbs to whole brain death.
n369 Instead of falling prey to the temptation to alter the definition of death to
meet the current capabilities of medical science, we should strive to improve
medical science to yield better success within current definitions of death.
With an issue as fundamental to a society as the determination of life or
death, it is imperative to have some sense of consensus before a change is
made. While there seems to be a plethora of opinions on this issue, I close
with a simple litmus test for consideration. George Annas, Professor of Health
Law at Boston University, said regarding the case of Baby Theresa that
life and death is not an individual question. In some sense, it's arbitrary,
but the death line has got to be solid. The litmus test is this: Would you feel
comfortable burying this person while she is still breathing on her own? If
not, you know at some level she is not dead.
n1. Francis A. Schaeffer
& C. Everett Koop, Whatever Happened to the Human Race? 15 (1979).
In re T.A.C.P., 609 So. 2d 588, 589 (Fla. 1992). Doctors discovered the baby's defect using an ultrasound test. Rick Bragg, The
Life and Death of Theresa Ann, Ottawa Citizen, Apr. 3, 1992, at C5. Ms. Campo,
31 years old, was a waitress, and Mr. Pearson, 30 years old, was an asphalt
worker at the time of the baby's birth. Judy Foreman, The Slippery Slope of
Transplant Policy, Boston Globe, Apr. 20, 1992, at 27. The parents had been
together 10 years at the time of Baby Theresa's birth, and they had two other
healthy children. Appeals Judges Refuse to Declare Baby Dead, UPI, Mar. 27,
1992, available in LEXIS, Nexis Library, UPI File hereinafter Appeals Judges.
T.A.C.P., 609 So. 2d at 589; Mike Clary, Baby Theresa's Gift: Debate Over Organ-Harvesting Laws, L.A.
Times, Apr. 16, 1992, at A5; Baby Theresa Gets Sicker; Parents to Appeal Donor
Ruling, Reuters, Mar. 28, 1992, available in LEXIS, Nexis Library, Reuter File
hereinafter Parents to Appeal.
T.A.C.P., 609 So. 2d at 589. The parents wanted her healthy heart, lungs, liver, eyes, and kidneys to be
donated. Appeals Judges, supra note 2.
T.A.C.P., 609 So. 2d at 589; Joan Beck, The Short Life and Meaningful Death of Baby Theresa, Chi. Trib.,
Apr. 2, 1992, at 29.
T.A.C.P., 609 So. 2d at 589; Mike Clary, Infant with Partial Brain Dies; Organ-Donor Appeal Too Late, L.A.
Times, Mar. 31, 1992, at A14.
T.A.C.P., 609 So. 2d at 589; Parents to Appeal, supra note 3.
T.A.C.P., 609 So. 2d at 589; Clary, supra note 6, at A14.
"At birth Theresa was very much alive." Charles Krauthammer, The Case of Baby Theresa, Wash. Post, Apr. 3, 1992, at
T.A.C.P., 609 So. 2d at 589. Neither the facts nor any outside sources have revealed whether the doctors
encouraged the parents to carry the baby to term for purposes of using Baby
Theresa's organs for transplantation.
n10. Id. The Florida Supreme Court noted that because Baby Theresa was alive under
Florida law, donation of her organs would have been illegal according to
732.912 of the Florida Statutes, a portion of Florida's Uniform Anatomical Gift
Id. at 595. For the text of 732.912, see infra note 90. Section 732.910 makes clear that
"it is the purpose of this part the Uniform Anatomical Gift Act to regulate the
gift of a body or parts of a body, the gift to be made after the death of a
donor." Fla. Stat. Ann. 732.910 (West Supp. 1993). Thus, under Florida law, organs can
be donated only after the death of the donor. If doctors procure the organs of
anencephalic infants before the infants die, they would violate these statutes
and subject themselves to possible civil and criminal liability.
n11. For a discussion of Florida's standards regarding the determination of death,
see infra notes 15, 27-29, and accompanying text.
n12. Krauthammer, supra note 8, at A21. Mr. Pearson declared that
"the problem with the Florida statute as it stands is that it's a Catch-22....
If you wait until they're legally dead under the definition of the Florida
statute, then their organs are dead. So it's pointless." Rick Bragg, Baby Dies; No Organs to Be Donated, St. Petersburg Times, Mar. 31,
1992, at A1.
T.A.C.P., 609 So. 2d at 589.
n14. Appeals Judges, supra note 2. Judge Moriarty, the Broward County Judge, relied
heavily on the testimony of Dr. Richard Beach. Id. The judge asked the doctor
"Is your baby dead?" and he said,
"No." The judge asked,
"Are you aware of any medically accepted definition of death that could apply to
"No, absolutely not," Dr. Beach responded. The judge declared,
"Death is a fact, it's not an opinion. I can't authorize you to take that
child's life. I can't declare the baby dead because she's not." Id.
T.A.C.P., 609 So. 2d at 589. On its face, this statute was designed to govern the determination of death
when artificial means maintain the respiratory and circulatory systems of the
382.009. Recognition of brain death under certain circumstances-
(1) For legal and medical purposes, where respiratory and circulatory
functions are maintained by artificial means of support so as to preclude a
determination that these functions have ceased, the occurrence of death may be
determined where there is the irreversible cessation of the functioning of the
entire brain, including the brainstem, determined in accordance with this
(2) Determination of death pursuant to this section shall be made in
accordance with currently accepted reasonable medical standards ....
(4) ... Except for a diagnosis of brain death, the standard set forth in this
section is not the exclusive standard for determining death or for the
withdrawal of life-support systems.
Fla. Stat. Ann. 382.009 (West Supp. 1993).
n16. Appeals Judges, supra note 2. Moriarty's order authorized the doctors to
remove any organ that the doctors concluded could be removed without
threatening Baby Theresa's life. Id. Together, her kidneys weighed eight grams.
Baby Theresa to Be Buried Thursday, UPI, Mar. 31, 1992, available in LEXIS,
Nexis Library, UPI File hereinafter Baby Theresa to Be Buried. Doctors would
have been able to transplant this mass of tissue into someone as old as five
years, but because the judge would only allow the doctors to remove one kidney,
resulting in four grams of tissue, the recipient could be no older than about
six months. Id. There were only five patients in the country on dialysis that
were that young, and none of them was a good tissue match. Id. Thus, none of
Baby Theresa's kidneys were removed. See id.
Upon her death, however, Baby Theresa's eyes were removed for possible
transplant. Id. Sadly, they were so small and underdeveloped that they could
not be used for transplant either. Id.
T.A.C.P., 609 So. 2d at 589.
n18. Appeals Judges, supra note 2. In its decision, the district court of appeal
Although it is undisputed that the child was born ... without a brain, and that
the child's organs will have little use for transplantation purposes after the
natural death of the child, it is also undisputed that the child has a
brainstem and is still alive, and we have been provided with no legal basis
upon which to overturn the trial court's decision. Indeed, the pertinent
Florida statutes appear to have been followed by the trial court. For these
reasons, we deny the emergency motion.
Id. The court acted without oral arguments and without responses from other
parties because the situation was urgent and the court hoped to permit further
appeal if the parents so chose. Id.
n19. Bragg, supra note 12, at A1.
T.A.C.P., 609 So. 2d at 589. The court noted that although Baby Theresa died during the pendency of the
appeal, it decided to exercise its inherent jurisdiction to hear the case
because this was
"an issue of great importance capable of repetition yet evading review."
Id. at 589 n.2; Clary, supra note 3, at A5 (noting that Florida Supreme Court agreed two days
after Baby Theresa's death to set case for oral arguments in Fall).
n21. Baby Theresa Laid to Rest, St. Petersburg Times, Apr. 3, 1992, at B8. Baby
Theresa was buried in Hollywood, Florida, in a section of the cemetery called
"the garden of innocence." Id.
n22. Clary, supra note 6, at A14; Baby Theresa to Be Buried, supra note 16.
T.A.C.P., 609 So. 2d at 589. Ninety-five percent of anencephalics that are born alive die within a week.
Krauthammer, supra note 8, at A21.
n24. Clary, supra note 6, at A14. Three minutes after the Fourth District Court of
Appeals certified the case as a
"compelling public interest," Baby Theresa died. Bragg, supra note 12, at A1.
T.A.C.P., 609 So. 2d at 589.
Id. at 589 n.4. Dr. Robert Levine, a Yale University professor of medical ethics, noted that
anencephaly probably do not experience anything, even pain, because they lack a brain
cortex. Sabra Chartrand, Legal Definition of Death Is Questioned in Florida
Case, N.Y. Times, Mar. 29, 1992, at 12. Attorney for the parents, Walter
Campbell Jr., also argued that children with
"don't have the ability to think or feel." Keith Goldschmidt, Florida Supreme Court to Decide Fate of Babies Without
Brains, Gannett News Service, Sept. 2, 1992, available in LEXIS, Nexis Library,
GNS File. In contrast, Dr. Alan Shewmon contended that it was a fiction that
anencephalics lack consciousness; often they can even distinguish their mother
from other individuals. Dan Allison, Anencephalic Babies Must Not Die to Serve
Others, St. Petersburg Times, May 1, 1992, at 2. Shewmon believes that the
brainstem takes over neurological functions that normally belong to the
cerebellum and cerebrum. Id. Because these higher lobes are undeveloped in
newborns, Shewmon thinks that at birth there is no significant functional
neurological difference between anencephalics and normal infants. Id.
Anencephalic newborns eat, sleep, breathe, smile, and cry. Id. Even thinkers
like Robert Truog and John Fletcher, who favor redefining death to include live
anencephalics, concede that the question of whether anencephalics perceive pain
or not is fundamentally unknowable. Krauthammer, supra note 8, at A21.
T.A.C.P., 609 So. 2d at 595. The common law of Florida was the source of authority for the Supreme Court
because 382.009 of the Florida Statutes only applied to cases where artificial
means like mechanical ventilators sustained patients' respiratory and cardiac
functions. For the text and a discussion of the statute, see supra note 15.
T.A.C.P., 609 So. 2d at 595.
n31. Id.; Fla. Stat. Ann. 732.912 (West Supp. 1993). For the text and a discussion
of the statute, see infra note 90 and accompanying text.
T.A.C.P., 609 So. 2d at 595.
n33. Florida Court Rejects New Death Definition, N.Y. Times, Nov. 15, 1992, at 26.
Baby Theresa's family went public with the tragedy in order to call attention
to the law that prohibited them from donating Theresa's organs before her
brainstem stopped functioning. Family, Friends Say Goodbye to Baby Theresa,
UPI, Apr. 2, 1992, available in LEXIS, Nexis Library, UPI File. The family
appeared on national television shows, including
"Sonya Live." Id.
T.A.C.P., 609 So. 2d at 589. Neither the Florida Supreme Court nor this author found any precedential case
law arguably on point. See
id. at 593.
n35. See Gina Kolata, Ethicists Debate New Definition of Death, N.Y. Times, Apr.
29, 1992, at C13. Ronald Cranford, a neurologist and chairman of the ethics
committee of the American Academy of Neurology, described
anencephaly as the congenital counterpart of the persistent vegetative. Id. The difference
between the two is that anencephalics never had a cerebral cortex, and adults
in a persistent vegetative state had one and lost it. Id.
Lawyers and ethicists commonly call this type of reasoning a
"slippery slope" argument, and they apply this term when society or the courts have accepted a
line of reasoning and its particular application and the question arises as to
other applications based on the same reasoning. Once the premises of an
argument and an application have been accepted, commentators wonder how
proponents can prevent the accepted reasoning from being applied to other
situations based on the same reasoning - a slide down the slippery slope.
n36. See Clary, supra note 3, at A5. Kenneth Goodman, a medical ethicist at the
University of Miami, believed that the highly publicized case communicated to
the country a
"massive mixed message'
" that is at the heart of the attempt to define death in this technological age.
Id. While most people could appreciate the parents' desire to find meaning in
Baby Theresa's birth, most were also troubled by the idea of intentionally
causing her death. Id.
n37. The Medical Task Force on
Anencephaly, The Infant with
322 New Eng. J. Med. 669, 669 (1990) hereinafter Task Force. This statement was also approved by the American
Academy of Pediatrics, the American Academy of Neurology, the American College
of Obstetricians and Gynecologists, the American Neurological Association, and
the Child Neurology Society. Id.
A number of researchers have provided a clear and extensive description
regarding the medical facts of
anencephaly; however, the report of the Medical Task Force is relatively recent and has
become a standard reference for commentators since its publication. For other
sources revealing similar information, see Shlomo Shinnar
& John Arras, Ethical Issues in the Use of Anencephalic Infants as Organ Donors,
7 Neurologic Clinics 729 (1989); Bonnie Taylor et al., Anencephalic Infants As
Organ Donors: The Medical, Legal, Moral, and Economic Issues, 87 J. Ark. Med.
Soc. 184 (1990); Fred Rosner et al., The Anencephalic Fetus and Newborn as
Organ Donors, N.Y. St. J. Med., July 1988, at 360.
n38. Task Force, supra note 37, at 669.
n40. Id.; Shinnar
& Arras, supra note 37, at 731.
n41. Task Force, supra note 37, at 669.
n42. Id.; Shinnar
& Arras, supra note 37, at 731.
n43. Task Force, supra note 37, at 670.
& Arras, supra note 37, at 730; Task Force, supra note 37, at 670; Rosner, supra
note 37, at 360.
& Arras, supra note 37, at 730; Task Force, supra note 37, at 670-71.
n46. Task Force, supra note 37, at 670; Taylor, supra note 37, at 184-85.
n47. Task Force, supra note 37, at 670.
n48. Id. There is a higher incidence of
anencephaly along the eastern seaboard of the United States and the western coastal
regions of Europe. Id. Portions of Texas near the Mexican border are also under
investigation by state and federal authorities because of a high incidence of
anencephaly. Goldschmidt, supra note 26. In April 1991, a physician in Cameron County
discovered three anencephalic babies born within 36 hours. Id. Overall, Cameron
County had a rate of 19 cases of
anencephaly per 10,000 births, and this was twice the national average during the period
of 1986-91. Id.
Regarding maternal reproductive history, the incidence of
anencephaly is increased in twins. Task Force, supra note 37, at 670. Other maternal
factors like hyperthermia, deficiencies of folate, zinc, and copper, have been
& Arras, supra note 37, at 730; Task Force, supra note 37, at 671.
n50. Task Force, supra note 37, at 671. Survival rates for as long as three months
and 14 months have been reported, but not confirmed. Id. These data are
confounded though because the early deaths did involve varying degrees of
medical treatment that may have prolonged survival or hastened death. Id.
n52. Id. Shinnar and Arras report that although most anencephalic infants die
within the first week, this statistic is misleading because no support measures
are generally given to these infants and in some cases even feeding is
& Arras, supra note 37, at 730.
n53. See Joyce L. Peabody et al., Experience with Anencephalic Infants as
Prospective Organ Donors,
312 New Eng. J. Med. 344, 344-46 (1989).
n54. Task Force, supra note 37, at 671. For an opposing view, see infra note 57.
n55. Task Force, supra note 37, at 671.
n56. Id. at 671-72. These behaviors include avoidance of noxious stimuli like
withdrawal or crying; feeding reflexes like rooting, sucking, or swallowing;
respiratory reflexes like breathing, coughing, or hiccups; and many facial
expressions that are seen in newborns with intact cerebral hemispheres. Id. at
& Arras, supra note 37, at 730-31.
n57. Task Force, supra note 37, at 672. Because of this presupposition, the Medical
Task Force concluded that anesthesia might be necessary to eliminate the
subcortical reflexes to the painful stimuli, but it was not necessary to
minimize or prevent suffering in the anencephalic infant. Id.
While admitting that the anencephalic infant's level of subjective awareness
is inherently unverifiable, Dr. Alan Shewmon cautioned those interested to keep
an open mind because of what is known about the brainstem, particularly in
newborns. D. Alan Shewmon, The Use of Anencephalic Infants as Organ Donors,
261 JAMA 1773, 1776 (1989). In experimental animals, researchers have discovered that brainstem structures
mediate complex behaviors, previously considered to be cortical, like binocular
depth perception, habituation, learning, and discriminative conditioning. Id.
Anencephalic infants also reveal a number of complex behaviors like
distinguishing their mothers from others, consolability, conditioning, and
associative learning. Id.
In normal newborns, the brainstem is much more developed than the cerebral
cortex, and the cerebral cortex is relatively nonfunctional, as revealed by
positron emission tomography. Id. Thus, anencephalic infants are neurologically
much more similar to normal infants than they are to decerebrate adults. Id.
Dr. Shewmon believed that it simply begged the question to apply adult-derived
neurophysiological principles to infants in support of the claim that a
functioning cortex is necessary for consciousness or pain perception in
newborns. Id. Dr. Shewmon hypothesized that developmental neuroplasticity could
allow brainstem structures to take on more complex integrative activity in the
absence of the cerebral hemispheres. Id. Therefore, contrary to the Medical
Task Force, he concluded that it was neither logically nor physiologically
valid to define that anencephalic infants cannot feel or experience pain. Id.
& Arras, supra note 37, at 731-32; Task Force, supra note 37, at 671. When
anencephaly occurs as the major anomaly, females are the predominant victims and there is
an excess of whites. Id.
n59. Task Force, supra note 37, at 671.
n60. Shewmon, supra note 57, at 1774.
n61. Task Force, supra note 37, at 671. Dr. Shewmon also offered statistics
regarding the number of patients who would benefit from anencephalic organs if
no ethical or legal barriers to their retrieval existed. Shewmon, supra note
57, at 1774. His results, though slightly different, were congruent with the
Medical Task Force. See id. He estimated that potentially 1,125 anencephalic
infants are born annually in this country. Id. About 20% of the pregnancies
nationwide are screened for defects like
anencephaly in the second trimester, and 95% of the detected anencephalic fetuses are
electively aborted, making the number of anencephalic births each year about
911. Id. Two-thirds of these births are stillborn, reducing the number of live
born anencephalics to 304. Id. Sixty percent of the live born anencephalics are
too small to provide transplantable organs, leaving the annual number of
potential anencephalic donors at 122. Id. Assuming that two-thirds of the
parents of these infants would be willing to donate their child's organs while
the child is still alive, the useful pool is reduced to 81. Id. Taking into
account issues like organ compatibility, transportation of the organs, etc.,
Shewmon said optimistically that by the year 1999, if the laws were relaxed to
allow harvesting of organs from live anencephalics soon after birth, then the
number of patients annually benefitting from anencephalic kidneys, hearts, and
livers nationwide would be 25, 12, and 7 respectively. Id. at 1775.
n62. Baby Without Viable Brain Dies, but Legal Struggle Will Continue, N.Y. Times,
Mar. 31, 1992, at A14 hereinafter Baby Without Viable Brain Dies. These
statistics may be high. Another commentator claimed that about 400-500 children
need new kidneys each year in the United States, and the same number need new
hearts and livers respectively. Jay A. Friedman, Taking the Camel by the Nose:
The Anencephalic as a Source for Pediatric Organ Transplant,
90 Colum. L. Rev. 917, 920 (1990). This would place the annual total at approximately 1,500 children who need
transplants. See id.
n63. Baby Without Viable Brain Dies, supra note 62, at A14.
n64. Committee on Bioethics of the American Academy of Pediatrics, Infants with
Anencephaly as Organ Sources: Ethical Considerations, 89 Pediatrics 1116, 1116 (1992);
Peabody, supra note 53, at 344.
n65. Baby Without Viable Brain Dies, supra note 62, at A14.
n66. Id.; Alexander M. Capron, Anencephalic Donors: Separate the Dead from the
Dying, Hastings Ctr. Rep., Feb. 1987, at 5 (noting that cadaver organs come
primarily from victims of car accidents).
n67. Baby Without Brain Dies, supra note 62, at A14. Child abuse victims and
children who die of sudden infant death syndrome (SIDS) are also thought of as
potential donors. Debra H. Berger, The Infant with
Anencephaly: Moral and Legal Dilemmas, 5 Issues in L.
& Med. 69 (1989). Most child abuse victims are older children whose organs would
be too large to transplant into an infant with a congenital defect, and SIDS
organs are often unsuitable because of the irreversible damage that usually
occurs when respiration and circulation are not initiated within minutes of the
SIDS death. Id.
n68. Committee on Bioethics, supra note 64, at 1116.
n69. Task Force, supra note 37, at 672.
n71. See Friedman, supra note 62, at 930 ("Under current criminal statutes, the procurement of vital organs from an
independently breathing anencephalic newborn would be considered the proximate
cause of the baby's death, and the physician who procured such organs would be
open to homicide charges.").
n72. See Wolfgang Holzgreve et al., Kidney Transplantation from Anencephalic
316 New Eng. J. Med. 1069, 1069 (1987) ("The concept that the anencephalic fetus, because of the absence of brain
development, has never been alive despite the presence of a heart beat is now
accepted in the courts of the Federal Republic of Germany."). Note that both Germany and Japan perform transplants using anencephalic
infants as donors who do not meet whole brain death criteria. Friedman, supra
note 62, at 948.
n73. Holzgreve, supra note 72, at 1069.
n74. Task Force, supra note 37, at 672-73. Some commentators have suggested a
possible variation of this protocol in order to preserve the anencephalic's
organs until the onset of total brain death: body cooling. See Beth Brandon,
Anencephalic Infants as Organ Donors: A Question of Life or Death,
40 Case W. Res. L. Rev. 781, 798-99 (1989-90) (citing Joseph Fletcher et al., Primates and Anencephalics as
Sources for Pediatric Organ Transplants, 1 Fetal Therapy 150 (1986)). The live
anencephalic newborn would be cooled by surface applications of cooling media
or cool intravenous solutions.
Id. at 798. The problem with this approach is that it may hasten death. Id. Proponents
argue that the method is morally justified because it is senseless to speak of
harming an anencephalic infant because they are
"beyond the point of injury.'
Id. at 799. Dr. Kantrowitz used this cooling method when he procured an anencephalic
infant's heart for the first human-to-human heart transplant operation in the
United States. Id.
n75. Task Force, supra note 37, at 672.
n76. See Peabody, supra note 53, at 345. This paper presented the results of a 1988
study at the Loma Linda University Medical Center that attempted to determine
if alterations in the medical treatment of anencephalic infants might allow
organ viability to be maintained until whole brian death criteria were met. Id.
at 344. Twelve live-born anencephalic infants entered the study. Id. Six
received intensive care, including mechanical ventilation, from birth, and the
other six only received intensive care when signs of imminent death appeared.
Id. Only two infants, one from each group of six, met the criteria for total
brain death within one week, and no solid organs were harvested. Id. The
experiment with modified medical care was designed to last only one week for
each group. Id. at 345. This time limit was chosen to prevent indefinite
prolongation of the dying process in the infants. Id. Furthermore, the doctors
were well aware that 95% of live-born anencephalic infants die within seven
days after birth; thus, this terminus seemed reasonable. Id. Doctors discovered
that when intensive care was provided to the six infants from birth, organ
vitality was maintained, but brainstem activity only ceased in one infant
within the first week. Id. at 344. When the doctors delayed intensive care
until signs of imminent death appeared in the other group of six, most organs
were too damaged to make them suitable for transplantation. Id. The researchers
concluded that it was usually not feasible, with the current legal
restrictions, to obtain solid organs for transplantation from anencephalic
infants. Id. They were trapped in a catch-22: If organ vitality was maintained
through intensive care, the brainstem would not usually die; if intensive care
was delayed until the brainstem showed signs of cessation, the other organs
were too damaged to be usable. See id.
n77. Id. at 346.
n78. Task Force, supra note 37, at 673.
n79. Id. Six of the seven infants mentioned under this protocol were the second
group in the Loma Linda study. See id. at 673
& n.33. For details regarding this study and the second group, see supra note 76.
n80. Task Force, supra note 37, at 673.
n86. Id. Only 41 of these infants were actually used as sources of transplanted
organs: 37 provided kidneys, 2 provided livers, and 3 provided hearts. Id.
n87. Id. The Medical Task Force was able to determine which of the four protocols
that doctors used in managing 34 of the 80 anencephalic infants. Id. It
cross-referenced this information with the successful transplant operations to
determine success rates for each protocol: the first protocol, 100% (4 of 4),
this approach was used four times, and it resulted in four successful
transplants; the second protocol, 0% (0 of 8); the third protocol, including
the variant, 8% (1 of 12); and the fourth protocol, 11% (1 of 9). Id. The
evidence from this data is pointed.
n88. See Berger, supra note 67, at 68-69; Kathleen L. Paliokas, Anencephalic
Newborns as Organ Donors: An Assessment of
"Death" and Legislative Policy,
31 Wm. & Mary L. Rev. 197, 216-17 (1989); Andrea K. Scott, Note, Death Unto Life: Anencephalic Infants as Organ Donors,
74 Va. L. Rev. 1527, 1531-32 (1988).
n89. See Berger, supra note 67, at 69-70; Task Force, supra note 37, at 672-73.
n90. Unif. Anatomical Gift Act, 8A U.L.A. 15, 34 (1983). The Uniform Anatomical
Gift Act was approved by the National Conference of Commissioners on Uniform
State Laws and the American Bar Association in 1968. Id. at 16. Subsequently,
every state in the United States adopted the law to encourage the donation of
organs. Id. at 15-18.
Florida adopted the statute in 1969 as 732.910 to 732.922 of its state code.
Id. at 15. Section 732.910 provides that
"it is the purpose of this part to regulate the gift of a body or parts of a
body, the gift to be made after the death of a donor." Fla. Stat. Ann. 732.910 (West Supp. 1993). Section 732.912 provides, in
(1) Any person who may make a will may give all or part of his body for any
purpose specified in s. 732.910, the gift to take effect upon death.
(2) In the order of priority stated and in the absence of actual notice of
contrary indications by the decedent or actual notice of opposition by a member
of the same or a prior class, any of the following persons may give all or any
part of the decedent's body for any purpose specified in s. 732.910:
(a) The spouse of the decedent;
(b) An adult son or daughter of the decedent;
(c) Either parent of the decedent; ....
Fla. Stat. Ann. 732.912 (West Supp. 1993).
The Uniform Anatomical Gift Act was amended in 1987 to further encourage the
donation of organs and to restore some uniformity to the Act because several
states had amended the 1968 Act. Unif. Anatomical Gift Act, 8A U.L.A. 2 (Supp.
1991). Thirteen states have adopted the 1987 Act. Ark. Code Ann. 20-17-601 to
-615 (Michie 1991); Cal. Health
& Safety Code 7150-7160 (West Supp. 1993); Conn. Gen. Stat. Ann. 19a-279a to
-280a (West Supp. 1993); Haw. Rev. Stat. 327-1 to -14 (Supp. 1991); Idaho Code
39-3401 to -3417 (Supp. 1992); Mont. Code Ann. 72-17-101 to -312 (1991); Nev.
Rev. Stat. 451.500-.590 (1991); N.D. Cent. Code 23-06.2-01 to -12 (1991); R.I.
Gen. Laws 23-18.6-1 to -15 (1989); Utah Code Ann. 26-28-1 to -12 (Supp. 1992);
Vt. Stat. Ann. tit. 18, 5238-5247 (Supp. 1992); Va. Code Ann. 32.1-289 to
-297.1 (Michie 1992); Wis. Stat. Ann. 157.06 (West Supp. 1992).
Like the 1968 Act, the 1987 Act does not allow the donation of organs to take
effect until the death of the donor. See Unif. Anatomical Gift Act 3(a), 8A
U.L.A. 14 (Supp. 1991). Thus, because every state in the United States has
either adopted the 1968 or the 1987 Act, no state allows the harvesting of
organs for transplant unless the donor is dead.
n91. See Unif. Determination of Death Act 1, 12 U.L.A. 340 (Supp. 1991) (requiring
either irreversible cessation of circulatory and respiratory functions or
irreversible cessation of all functions of entire brain, including brainstem,
for declaration of death).
n92. President's Comm'n for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research, Defining Death: Medical, Legal and Ethical
Issues in the Determination of Death 5 (1981) hereinafter Defining Death.
n93. See Defining Death, supra note 92, at 5; Brandon, supra note 74, at 789. The
T.A.C.P. court noted that there was some doubt regarding the method through
which the cardiopulmonary definition became a part of the common law of the
In re T.A.C.P., 609 So. 2d 588, 591 (Fla. 1992). Apparently, courts simply cited the definition found in earlier editions of
Black's Law DictionarySee
Smith v. Smith, 317 S.W.2d 275, 279 (Ark. 1958);
Thomas v. Anderson, 215 P.2d 478, 481-82 (Cal. Ct. App. 1950). Thus, the definition may only have been the result of Black's earlier editors.
T.A.C.P., 609 So. 2d at 591 (citing C. Anthony Friloux, Jr., Death, When Does It Occur?,
27 Baylor L. Rev. 10, 12-13 (1975)). Earlier editions of Black's Law Dictionary defined death as
"the cessation of life; the ceasing to exist; defined by physicians as a total
stoppage of the circulation of the blood, and a cessation of the animal and
vital functions consequent thereon, such as respiration, pulsation, etc." Black's Law Dictionary 488 (4th ed. 1968). More recent editions of Black's Law
Dictionary define death in accordance with the Uniform Determination of Death
Act. See Black's Law Dictionary 400 (6th ed. 1990). For the text of the Uniform
Determination of Death Act, see infra note 119 and accompanying text.
n94. Paliokas, supra note 88, at 201.
n95. Id. at 201-03.
n96. See id. at 202.
n99. Id. at 203.
n100. Brandon, supra note 74, at 789.
n101. Defining Death, supra note 92, at 22-23; Friedman, supra note 62, at 926;
Paliokas, supra note 88, at 203.
n102. See Defining Death, supra note 92, at 23-24.
n103. Id. at 24.
n105. Id.; Brandon, supra note 74, at 789.
n106. Defining Death, supra note 92, at 23; Brandon, supra note 74, at 789.
n107. Brandon, supra note 74, at 789; Paliokas, supra note 88, at 203.
n108. Defining Death, supra note 92, at 23.
n109. Brandon, supra note 74, at 789.
n110. See Friedman, supra note 62, at 926.
n111. Id. (citing John H. Thornton
& Marcia J. Staff, Death and the Life Insurance Policy: What Hath Modern
36 Okla. L. Rev. 285, 290-91 (1983)).
n112. Id. at 926-27 (citing
People v. Eulo, 472 N.E.2d 286, 294 (N.Y. 1984) (construing statutory term
"death," under facts described, to include determination of irreversible cessation of
functioning of entire brain, even though statute did not specifically recognize
n113. Ad Hoc Comm. of the Harvard Medical School to Examine the Definition of Death,
A Definition of Irreversible Coma,
205 JAMA 337 (1968) hereinafter Harvard Criteria.
n114. Defining Death, supra note 92, at 24; Brandon, supra note 74, at 789-90.
n115. See Brandon, supra note 74, at 790-91. The Harvard Criteria required a
concurrence of four conditions for a declaration of brain death: (1)
unreceptivity and unresponsivity (to externally applied, intense stimuli); (2)
no movement or breathing; (3) no reflexes; and (4) a flat or isoelectric
electroencephalogram (EEG). Harvard Criteria, supra note 113, at 337-40.
While the medical community generally accepted the Harvard Criteria and the
"whole brain death" standard, the public at large became fearful that the new criteria might be
used to allow premature organ harvesting for transplantation. Brandon, supra
note 74, at 790-91. Courts and legislatures also produced varied responses,
some adhering to the traditional cardiopulmonary standard and others updating
to include a whole brain death standard. Id. at 791. The resulting confusion
led to a call for a uniform law that would define death. Id.
n116. Brandon, supra note 74, at 791.
n117. Unif. Determination of Death Act 1, 12 U.L.A. 338 (Supp. 1991).
n118. Brandon, supra note 74, at 791-92. Currently, 27 states and the District of
Columbia have adopted the UDDA. They include: Ark. Code Ann. 20-17-101 (Michie
1991); Cal. Health
& Safety Code 7180-7184 (West Supp. 1993); Colo. Rev. Stat. Ann. 12-36-136 (West
1985); Del. Code Ann. tit. 24, 1760 (1987
& Supp. 1992); D.C. Code Ann. 6-2401 (1989); Ga. Code Ann. 31-10-16 (Michie
Supp. 1992); Idaho Code 54-1819 (1988); Ind. Code Ann. 1-1-4-3 (West 1993);
Kan. Stat. Ann. 77-204 to -206 (1989); Me. Rev. Stat. Ann. tit. 22, 2811-2813
(West 1992); Md. Health-Gen. Code Ann. 5-201 to -202 (1990); Minn. Stat. Ann.
145.135 (West Supp. 1993); Miss. Code Ann. 41-36-1, 41-36-3 (1981); Mo. Ann.
Stat. 194.005 (Vernon 1983); Mont. Code Ann. 50-22-101 (1991); Nev. Rev. Stat.
451.007 (1991); N.H. Rev. Stat. Ann. 141-D:1 to 141-D:2 (1990); N.D. Cent. Code
23-06.3-01 to -02 (1991); Ohio Rev. Code Ann. 2108.30 (Baldwin 1987); Okla.
Stat. Ann. tit. 63, 3121-3123 (West Supp. 1993); Or. Rev. Stat. 432.300 (1992);
35 Pa. Cons. Stat. Ann. 10201-10203 (1993); R.I. Gen. Laws 23-4-16 (1989); S.C.
Code Ann. 44-43-450 to -460 (Law. Co-op. 1985); Tenn. Code Ann. 68-3-502
(1992); Vt. Stat. Ann. tit. 18, 5218 (1987); W. Va. Code 16-10-1 to -4 (1991);
Wyo. Stat. 35-19-101 to -103 (1988).
The following 14 states have not adopted the UDDA, but they have adopted a
provision for brain death: Ala. Code 22-31-1(b) (1990); Alaska Stat. 09.65.120
(Supp. 1992); Conn. Gen. Stat. Ann. 19a-504a(b) (West 1986); Fla. Stat. Ann.
382.009 (West Supp. 1993); Haw. Rev. Stat. 327C-1 (1985); Ill. Ann. Stat. ch.
755, 50/2 (Smith-Hurd 1992); Iowa Code Ann. 702.8 (West 1979); La. Rev. Stat.
Ann. 9:111 (West 1991); Mich. Comp. Laws Ann. 333.1033 (West 1992); N.M. Stat.
Ann. 12-2-4 (Michie 1988); N.C. Gen. Stat. 90-323 (1992); Tex. Health
& Safety Code Ann. 671.001 (West 1992); Va. Code Ann. 54.1-2972 (Michie 1991);
Wis. Stat. Ann. 146.71 (West 1989).
n119. Unif. Determination of Death Act 1, 12 U.L.A. 340 (Supp. 1991).
n120. See id. To this point, no state has enacted a
"higher brain function" or
"neocortical" standard as its definition of death. Friedman, supra note 62, at 929. Such a
standard would define death as the irreversible cessation of cognitive,
nonspontaneous brain activity that prevents the existence of any form of
consciousness. Id. The term
"neocortical death" is synonymous with
"irreversible noncognitive state,"
"persistent vegetative state,"
"appalic syndrome," and
"cerebral death." Id. The neocortical standard is the most expansive of the definitions of death
because it would even classify individuals who can breathe on their own as dead
if they lack all higher brain functions. Id.
n121. Unif. Determination of Death Act 1, 12 U.L.A. 340 (Supp. 1991).
n122. See Friedman, supra note 62, at 930.
In re T.A.C.P., 609 So. 2d 588, 593 n.10, 595 (Fla. 1992) (adopting cardiopulmonary standard, bringing Florida into harmony with UDDA,
and applying cardiopulmonary standard to Baby Theresa, who was breathing on her
own at times in question).
n124. Brandon, supra note 74, at 792. For a discussion of the UAGA and the dead
donor requirement, see supra note 90 and accompanying text.
n125. Brandon, supra note 74, at 792-93.
n126. See Parents to Appeal, supra note 3. Florida State Representative Elaine
Gordon, in response to the plight of Baby Theresa, said that she would
introduce legislation to change the current law in Florida and allow babies
anencephaly to be declared legally dead. Id.
n127. Brandon, supra note 74, at 795; Friedman, supra note 62, at 936.
n128. Scott, supra note 88, at 1561.
n130. Friedman, supra note 62, at 937.
n132. Brandon, supra note 74, at 796.
n133. Friedman, supra note 62, at 937.
n135. Scott, supra note 88, at 1561.
n136. Fla. H.B. 1089 (1988); see
In re T.A.C.P., 609 So. 2d 588, 593 (Fla. 1992). The text of the proposed bill read as follows:
Be it Enacted by the Legislature of the State of Florida:
Section 1. Subsection (1) of section 382.009, Florida Statutes, is amended to
382.009 Recognition of brain death under certain circumstances -
(1) For legal and medical purposes, where respiratory and circulatory
functions are maintained by artificial means of support so as to preclude a
determination that these functions have ceased, the occurrence of death may be
determined where there is the irreversible cessation of the functioning of the
entire brain, including the brainstem, determined in accordance with this
section. However, when anencephalia exists, it is presumed brain activity does
not exist and the criteria for brain death have been fulfilled.
"Anencephalia" is defined as a developmental anomaly characterized by absence of the cranial
vault, and cerebral hemispheres completely missing or reduced to small masses
attached to the base of the skull.
Fla. H.B. 1089 (1988) (italicized words were proposed additions).
T.A.C.P., 609 So. 2d at 589. The court agreed to take jurisdiction of the case even though Baby Theresa
died during the pendency of the appeal because it was an issue of great
Id. at 589 n.2. The Fourth District Court of Appeals certified this case to be of great public
Id. at 589. Under the Florida Constitution, the Florida Supreme Court is granted leave to
"review any decision of a district court of appeal that passes upon a question
certified by it to be of great public importance, or that is certified by it to
be in direct conflict with a decision of another district court of appeal." Fla. Const. art. 5, 3(b)(4); see also
Holly v. Auld, 450 So. 2d 217, 218 (Fla. 1984) ("It is well settled that mootness does not destroy an appellate court's
jurisdiction, however, when the questions raised are of great public importance
or are likely to recur.").
n138. Bragg, supra note 12, at A1. Either option would provide the legal basis for
doctors to remove an anencephalic infant's organs while the organs are still
viable. Id. Currently, however, doctors would almost certainly have to initiate
such removal procedures while the baby's brainstem was still alive. See id.
T.A.C.P., 609 So. 2d at 590-91. For its medical facts concerning
anencephaly, the court relied heavily on a report of the Medical Task Force on
Anencephaly. See Task Force, supra note 37, at 669-73. For further medical facts on
anencephaly and a discussion of the report, see supra part II.A-B.
T.A.C.P., 609 So. 2d at 590.
n141. Id. The court pointed out that much confusion had arisen because of the
tendency of some parties and amici to equate
anencephaly with less serious conditions. Id. After the oral arguments before the Florida
Supreme Court, controversy erupted over medical definitions of
anencephaly when the National Legal Center for the Medically Dependent and Disabled held a
news conference. Diane Rado, Court Case Could Redefine Death, St. Petersburg
Times, Sept. 3, 1992, at B1. Present at the conference were two mothers who
said that their babies were diagnosed as anencephalic. Id. The disabled
children were three years old and four months. Id. The medical literature and
doctors say that anencephalic infants normally live only a few days at the
most. According to the Medical Task Force on
Anencephaly, the longest verified case of anencephalic infant survival was two months. Task
Force, supra note 37, at 671. ACLU attorney Charlene Carres questioned whether
the two babies were accurately diagnosed and whether the whole news conference
was appropriate. Rado, supra, at B1. She believed that
"the press conference held after the oral arguments was exploitative of both the
infants and the family members that were put on parade ...." Id.
T.A.C.P., 609 So. 2d at 590. The court noted that most reported anencephalic children die in the first few
days after birth. Id. The court recognized that the survival rates of the
infants were not totally comparable because of the varying degrees of medical
care given to them. Id. Doctors may have given some more life support than
n143. Id. The court stated that anencephalics were permanently unconscious by
definition because they lack the cortical structure necessary for conscious
thought. Id. (citing Task Force, supra note 37, at 671). But see Shewmon, supra
note 57, at 1776 (arguing that what is known about functional capabilities of
brainstem, particularly in infants, suggests keeping open mind regarding
ability of anencephalics to experience consciousness).
Furthermore, the court noted the similarity of anencephalics to persons in a
persistent vegetative state, and it described the spontaneous movements that
anencephalic infants make like movements of the extremities,
"startle" reflexes, pupils responding to light, feeding reflexes, coughing, hiccup, eye
movements, and facial gestures.
T.A.C.P., 609 So. 2d at 590.
T.A.C.P., 609 So. 2d at 591. The court accepted the Medical Task Force's distinction between pain and
suffering. Id. (citing Task Force, supra note 37, at 672). Anencephalics may
reveal reflexes to avoid painful stimuli when the brainstem is functioning. Id.
These responses are innate, unconscious withdrawal responses, and the
anencephalic infants presumably do not suffer. Id. The court did acknowledge
that the incapacity to suffer has not been established with certainty. Id.; see
also Shewmon, supra note 57, at 1776 (arguing that anencephalics may feel and
experience pain because brainstem in absence of cerebral hemispheres may assume
more complex integrative activity than normally expected) ("It neither logically nor physiologically follows that anencephalic infants
"by definition ... can neither feel nor experience pain.'..Both prudence and
logical consistency demand that we attribute to anencephalic infants at least
as much consciousness and capacity for suffering as we attribute to laboratory
animals with even smaller brains, which every one seems to feel obliged to
T.A.C.P., 609 So. 2d at 591. The court accepted the statistics of the Medical Task Force regarding the
number of successful transplants from anencephalic infants. See id. Through
1990, the Task Force identified only 12 successful transplants using
anencephalic organs. Id. (citing Task Force, supra note 37, at 672-73). The
transplants were most successful when doctors placed the anencephalic infant on
life support immediately after birth and the organs were harvested as soon as
possible without regard to the vitality of the brainstem. Id.
n146. Id. (citing Stephen Ashwal et al.,
Anencephaly: Clinical Determination of Brain Death and Neuropathologic Studies, 6 Pediatric
Neurology 233, 239 (1990); Peabody, supra note 53, at 344 ("Nationally, 30 to 50 percent of children under two years of age who are
registered for transplantation die while waiting for donor organs to become
n147. See id.
n148. For a full discussion of the evolution of the legal definitions of death in
U.S. jurisdictions, see supra part II.C. Under the cardiopulmonary standard for
death, a person was not dead until her breathing and heartbeat ceased without
the possibility of resuscitation. See
T.A.C.P., 609 So. 2d at 591 (citing
Thomas v. Anderson, 215 P.2d 478, 481-82 (Cal. Ct. App. 1950) ("Death occurs precisely when life ceases and does not occur until the heart
stops beating and respiration ends. Death is not a continuing event and is an
event that takes place at a precise time.")).
T.A.C.P., 609 So. 2d at 591. The court's research revealed no English cases prior to July 4, 1776, that
founded a common law definition of death adopted into Florida's common law by
virtue of 2.01 of the Florida Statutes. Id. Section 2.01 adopted the common and
statute laws of England:
The common and statute laws of England which are of a general and not a local
nature, with the exception hereinafter mentioned, down to the fourth day of
July, 1776, are declared to be of force in this state; provided, the said
statutes and common law be not inconsistent with the constitution and laws of
the United States and the acts of the legislature of this state.
Fla. Stat. Ann. 2.01 (West 1988).
T.A.C.P., 609 So. 2d at 591. For a current listing of those jurisdictions that have adopted the Uniform
Determination of Death Act, see supra note 118.
T.A.C.P., 609 So. 2d at 592.
n152. Id. For the text of the statute, see supra note 15.
T.A.C.P., 609 So. 2d at 592.
n156. Id. The statute is expressly limited to the situation in which
"respiratory and circulatory functions are maintained by artificial means of
support." Fla. Stat. Ann. 382.009(1) (West Supp. 1993).
T.A.C.P., 609 So. 2d at 592-93.
n158. The Vital Statistics Act, Fla. Stat. Ann. 382.002(10) (West Supp. 1993)
"live birth" as the
"complete expulsion or extraction of a product of human conception from its
mother, irrespective of the duration of pregnancy, which after such expulsion,
breathes or shows any other evidence of life such as beating of the heart,
pulsation of the umbilical cord, and definite movement of the voluntary muscles
n159. Id. 382.002(7) (defining
"fetal death" as
"death prior to the complete expulsion ... from its mother if the 20th week of
gestation has been reached and the death is indicated by the fact that after
such expulsion or extraction the fetus does not breathe or show any other
evidence of life such as beating of the heart ... or definite movement of
T.A.C.P., 609 So. 2d at 593.
n161. Id.; see
Duncan v. Flynn, 358 So. 2d 178, 178-79 (Fla. 1978) (holding that unborn viable fetus is not
"person" within meaning of Florida's Wrongful Death Act, Fla. Stat. Ann. 768.01-.03
(West Supp. 1993), and child is not born alive for purposes of wrongful death
statute, until he or she acquires separate and independent existence from
T.A.C.P., 609 So. 2d at 593.
n164. Fla. H.B. 1089 (1988). For the text and a discussion of the bill, see supra
T.A.C.P., 609 So. 2d at 593.
n167. Id. The court noted that some of the parties and amici cited other analogous
areas of law as lending authority: civil rights for disabled persons, including
504 of the federal Rehabilitation Act and the federal Americans with
Id. at 593 n.9. While Florida had congruent laws, the court determined that these laws did not
apply because, as is evident, these laws did not apply to the dead. Id. The
real question was whether Baby Theresa was dead at the times in question. Id.
Furthermore, the court was not persuaded that
Roe v. Wade, 410 U.S. 113 (1973), or any of its progeny were applicable to the facts of this case.
T.A.C.P., 609 So. 2d at 593 n.9.
"By its own terms," the court stated,
"Roe did not attempt to
"resolve the difficult question of when life begins.'
" Id. (quoting
Roe, 410 U.S. at 159).
Finally, the court did not find that a parental right of privacy was
implicated in this case because privacy did not give parents the right to
donate the organs of a child born alive who was not yet legally dead. Id.
(citing Fla. Const. art. I, 23, which states that
"every person has the right to be let alone and free from governmental intrusion
into his private life except as otherwise provided herein ....").
T.A.C.P., 609 So. 2d at 593.
n169. Id. The court noted that the adoption of this common law definition
essentially brought Florida into harmony with the Uniform Determination of
Death Act, which stated the same two standards that were separately contained
in the common law definition and 382.009 of the Florida Statutes.
Id. at 594 n.10.
Id. at 593.
Id. at 594. It was not necessary for the court to address the possibility of altering the
statutory definition of whole brain death, which included death of the
brainstem, because mechanical ventilation did not sustain Baby Theresa at the
times when organ harvesting was considered. See
id. at 589, 595. Normally, however, the debate concerning the need to alter definitions of
death to create an exception for anencephalics centers around the brain death
standard because these infants are often placed on mechanical ventilation to
maintain the vitality of their organs if transplantation is a possibility. The
success rate for transplantation is much higher if doctors place the
anencephalic on mechanical ventilation immediately after birth and harvest the
infant's organs while the brainstem is still alive. See Task Force, supra note
37, at 672, 673.
T.A.C.P., 609 So. 2d at 594. The court noted, for example, that public necessity demanded that they change
the common law of Florida through the adoption of the cardiopulmonary
definition of death. Id. The court established its right to alter the common
law of Florida in Hoffman v. Jones, where the court held that it did have the
power to alter a previously adopted rule of common law in light of current
"social and economic customs'
" and modern
"conceptions of right and justice.'
280 So. 2d 431, 436 (Fla. 1973). In Hoffman, the change was from the rule of contributory negligence as a
complete bar to recovery to the rule of comparative negligence.
Id. at 438.
The court, however, stated that it would only alter the common law when public
necessity or fundamental rights demanded it.
T.A.C.P., 609 So. 2d at 594 (citing
Coastal Petroleum Co. v. Mobil Oil Corp., 583 So. 2d 1022, 1025 (Fla. 1991) (stating that court would not hesitate to participate in ongoing evolution of
common law principles whenever public necessity demanded it);
Haag v. State, 591 So. 2d 614, 618 (Fla. 1992) (holding that common law precedent must be followed except when departure is
necessary to vindicate other principles of law or any fundamental rights set
forth in Florida Constitution)).
T.A.C.P., 609 So. 2d at 594-95.
Id. at 594.
n176. Id. The sincerity of the parents in their altruistic quest to help the lives
of other dying infants and to give meaning to the life of Baby Theresa was
never doubted. Dr. Wayne DiGiacomo, who delivered Baby Theresa said the baby's
"a brave woman to have this decision to carry the fight to this level, to have
her child live on through other children.'
" Bragg, supra note 12, at A1. Throughout the ordeal, the exhausted parents and
other relatives of Baby Theresa maintained a bedside vigil next to the tiny
infant, who wore red and white trimmed booties and whose head was swaddled with
bandages. Parents to Appeal, supra note 3.
T.A.C.P., 609 So. 2d at 594. This factor seems to have determined the outcome of the case. In the absence
of precedent, the court would not find the presence of a public necessity to
change the common law definition of death if the medical community could not
agree on the utility or wisdom of using anencephalic infants as organ donors.
id. at 595.
n178. Id. (citing Paliokas, supra note 88, at 217
& n.142; Scott, supra note 88, at 1530-31).
n179. Id. at 594-95.
n180. Id. at 594 (citing Shewmon, supra note 57, at 1774-75). For a discussion of
the statistics on this question, see supra notes 61, 69-87, and accompanying
n181. Shewmon, supra note 57, at 1775.
T.A.C.P., 609 So. 2d at 594 (citing Shinnar
& Arras, supra note 37, at 741).
& Arras, supra note 37, at 741.
T.A.C.P., 609 So. 2d at 594 (citing Norman Fost, Removing Organs from Anencephalic Infants: Ethical and
Legal Considerations, 16 Neonatal Neurology 331, 336 (1989)). But see Charles
N. Rock, The Living Dead:
Anencephaly and Organ Donation, 7 N.Y.L. Sch. J. Hum. Rts. 243, 276-77 (1989) ("From the above account, we can see that a consensus is beginning to form which
would permit anencephalic organ donation.").
T.A.C.P., 609 So. 2d at 594 (citing Defining Death, supra note 92, at 2 ("The Commission recommends the adoption of this statute the Uniform
Determination of Death Act in all jurisdictions in the United States.")). For the text of the Uniform Determination of Death Act, see supra part II.C.
n186. See Unif. Determination of Death Act 1, 12 U.L.A. 340 (Supp. 1991). For the
text of the UDDA, see supra part II.C. The Act partially states that the
brainstem must have irreversibly ceased to function for a person to be declared
dead, but anencephalics like Baby Theresa are born with functioning brainstems.
See Friedman, supra note 62, at 930. Several sections of the American Bar
Association reached essentially the same conclusion. National Conference on
Birth, Death, and Law, Report on Conference,
29 Jurimetrics J. 403, 421 (1989).
T.A.C.P., 609 So. 2d at 595 (citing Berger, supra note 67, at 85 ("To redefine infants with
anencephaly as being
"born dead' would be tantamount to labelling them as
"non-persons.' Even more importantly such a definition would permit the likely
inclusion into this category of all persons born with fatal neurological
insults, and perhaps even some infants born with nonfatal mental disabilities.")).
n189. The court likely had in mind, for example, those adults who exist in a
persistent vegetative state. Because they lack cortical function, they could
possibly be declared dead, consistent with this nonperson understanding and
their organs harvested for others who are cognizant but need a particular organ
n190. See Brandon, supra note 74, at 802 (noting that Dr. Joyce Peabody, Loma Linda
Hospital's Chief of Neonatology, claimed that slippery slope was real because
doctors contacted Loma Linda when it was engaged in its anencephalic organ
transplant research and suggested that infants with less severe defects than
anencephaly be enrolled in program).
T.A.C.P., 609 So. 2d at 595.
n192. Id. Note that the court did not elaborate on the potential legal and
constitutional problems that this case raised; it only mentioned their
potential implication. See id.
n193. Id. In essence, the court determined that it could not expand the common law
because neither a public necessity nor the vindication of fundamental rights
served as an impetus for the alteration. See
id. at 594, 595. Furthermore, the court did not state the obvious conclusion that if it
declared anencephalic infants dead at birth by virtue of their congenital
deformity, this would affect the application of both the cardiopulmonary and
whole brain death standards to anencephalics. These infants would be legally
dead at birth despite the presence of spontaneous heartbeat and breathing and
despite the presence of brainstem function if maintained on a respirator.
Id. at 595. This was the result of the court's weighing the public policy considerations
at stake. See
id. at 594. Dr. Robert Walker, a medical ethicist at the University of South Florida's
College of Medicine, felt that the crucial issue in the case was that
"since so few people with little children could benefit, was it worth changing
common sense and common law notions of what is alive and what is dead?'
" Diane Rado, Court Tackles Life and Death, St. Petersburg Times, Nov. 13, 1992,
at B1. Walker felt the court made the only decision it could because it would
have defied common sense to say that the baby was dead. Id.
T.A.C.P., 609 So. 2d at 595. Section 382.009 of the Florida Statutes would only have applied to Baby
Theresa if the mechanical ventilator had supported her circulation and
breathing at the times in question. See Fla. Stat. Ann. 382.009 (West Supp.
1993). For the text of the statute, see supra note 15.
T.A.C.P., 609 So. 2d at 595. Under the cardiopulmonary standard, a person was dead if her breathing and
heartbeat had stopped entirely without the possibility of resuscitation. See
id. at 594.
Id. at 595 (citing Fla. Stat. Ann. 732.912 (West Supp. 1993) ("Any person who may make a will may give all or part of his body for any purpose
specified in s. 732.910, the gift to take effect upon death."). Thus, any donation of Baby Theresa's organs prior to her death would have
violated this statute.
n199. See supra note 33 and accompanying text.
T.A.C.P., 609 So. 2d at 589, 593 & n.9.
id. at 595 (trying to find consensus within either the medical, ethical, or legal
communities regarding equating
anencephaly with death because these communities would be affected).
id. at 593.
Id. at 594, 595.
Id. at 595.
n205. See Task Force, supra note 37, at 670. Before the medical task force set the
standards, Lemire and his colleagues noted that an almost incomprehensible
array of synonyms and classifications of
anencephaly existed in the literature. Ronald J. Lemire et al.,
Anencephaly 5 (1978).
n206. See Task Force, supra note 37, at 670. Although some risk of misdiagnosis
always exists when fallible human agents are making the determinations, the
presence of clear standards greatly reduces that possibility. See id. Dr. Alan
Shewmon agreed that in the great majority of cases, the diagnosis of
anencephaly was very obvious and that there was little, if any, chance of mistaking it for
another condition. D. Alan Shewmon,
Anencephaly: Selected Medical Aspects, Hastings Ctr. Rep., Oct.-Nov. 1988, at 11, 12. He
noted, however, that the commonly encountered contention that
anencephaly was so well-defined and so distinct from all other congenital brain
malformations that misdiagnoses could not occur and that organ-harvesting
policies limited to anencephalics could not possibly extend to other
conditions, was simply false. Id. at 12. He made this assertion prior to the
work of the Medical Task Force in 1990 that established the accepted postnatal
diagnostic criteria for
anencephaly. For a list of these criteria, see supra note 46 and accompanying text.
n207. See Task Force, supra note 37, at 671.
n208. See Shewmon, supra note 206, at 15. Dr. Shewmon estimated that around
two-thirds of the anencephalics that are carried to term are stillborn. Id.
n209. Task Force, supra note 37, at 671. The Medical Task Force reported that in
three large studies, survival beyond one week occurred in none, five percent,
and nine percent of the infants. Id. Dr. Shewmon, who claimed that two of these
studies casted doubt on the assertion that anencephalic infants invariably die
within a few days of birth, did quote the same statistics as the Task Force.
Shewmon, supra note 206, at 15. In one study of 181 anencephalic infants, 42%
of those born alive survived longer than 24 hours, 15% survived more than three
days, and 5% lasted longer than one week. Id. (citing Patricia A. Baird
& Adele D. Sadovnick, Survival in Infants with
Anencephaly, 23 Clinical Pediatrics 268-71 (1984)). A study of the California Birth Cohort
File between 1978 and 1982 confirmed that of the 205 live-born anencephalics
with a weight of greater than 2,500 grams, 47% died within 24 hours, 44% died
between one day and one week, and 9% survived longer than one week. Id.
n210. See Friedman, supra note 62, at 919-20; Scott, supra note 88, at 1531-32. The
current means of procuring pediatric organs are not meeting the demand. See
Berger, supra note 67, at 68-69. In this country alone, as many as half of the
children under two years of age, who need an organ transplant to survive, die
before an organ becomes available. Committee on Bioethics of the American
Academy of Pediatrics, supra note 64, at 1116.
n211. See Task Force, supra note 37, at 672, 673. Transplant protocols that delay
organ harvesting until the anencephalic infant is legally dead, based on
cardiopulmonary or whole brain death criteria, are rarely successful. See id.
n212. See id. Of course, this conclusion is based on current definitions and
standards for death that are accepted in the United States.
In re T.A.C.P., 609 So. 2d 588, 595 (Fla. 1992). Even organ donor networks have questioned the utility of using anencephalics
as donors. See Baby Without Viable Brain Dies, supra note 62, at A14. Wanda
Bond, a spokeswoman for the United Network for Organ Sharing - a private,
not-for-profit organization in Richmond, Virginia, that links organ transplant
centers in the United States - stated that their organization has had no
interest in anencephalics from the organ procurement side because of all the
problems associated with it. Id. She noted that such a small number of
individuals could be helped that the question is whether it makes sense to go
through all the difficulty. Id.
"Clearly, in the medical community the answer is it doesn't.'
n214. Shewmon, supra note 57, at 1775.
n217. Baby Without Viable Brain Dies, supra note 62, at A14 (quoting Dr. Mark Evans
for the assertion that about 5,000 children need pediatric organ transplants
every year in the United States).
In re T.A.C.P., 609 So. 2d 588, 594 (Fla. 1992).
n219. See Friedman, supra note 62, at 924 n.31.
n221. See id.
n222. Shewmon, supra note 57, at 1775.
n223. Id. Potential organ recipients might be willing to pay an expectant mother,
who is carrying an anencephalic infant, monetary incentives to deliver the baby
and allow its organs to be harvested for transplant. If the cause of
anencephaly could be isolated and reproduced in a fetus, then the idea of developing a
surrogate mother industry for anencephalic infants that would be used for organ
transplantation is not beyond the imaginable.
n224. See Friedman, supra note 62, at 924 n.31.
In re T.A.C.P., 609 So. 2d 588, 593-95 (Fla. 1992). Thus, the court considered the medical, legal, and ethical factors involved in
the decision of whether to expand the common law of Florida to equate
anencephaly with death.
id. at 595 (noting that some commentators had argued that treating anencephalics as dead
equated them with nonpersons and raised slippery slope problems).
n228. Id. Those who consider anencephalics to be
"nonpersons" will commonly espouse a neocortical or brain-absent definition of death based
on the concept that a human with a severe neurological impairment like
anencephaly is not really a person, thereby eliminating the main ethical problem in
killing them. Shewmon, supra note 57, at 1775, 1776. If a child was born with
anencephaly, its organs could be harvested under a neocortical definition of death despite
the presence of a functioning brainstem because, lacking cerebral hemispheres,
it is not really a person. Shinnar
& Arras, supra note 37, at 736. For a definition and discussion of the
neocortical standard of death, see supra note 120.
n229. Peter J. Riga, A Brief Life That Could Save Others, Nat'l L.J., Apr. 27, 1992,
at 15. In referring to Baby Theresa, Mr. Riga felt she was not a person in any
sense of the word. Id. She was simply
"human protoplasm which, with the help of medical science, could have reached
its fullest potential by helping other children to live as fully enabled human
n230. See Ferhaan Ahmad, Anencephalic Infants as Organ Donors: Beware the Slippery
Slope, 146 Canadian Med. Ass'n J. 236, 240-41 (1992); Berger, supra note 67, at
85; Friedman, supra note 62, at 970, 974; Shinnar
& Arras, supra note 37, at 738.
n231. See Shewmon, supra note 57, at 1775 (quoting Dr. Peabody's statement to Los
Angeles Times on August 19, 1988, that she had
"become educated by the experience.... The slippery slope is real'
"); see also Goldschmidt, supra note 26. Julie Koenig, guardian ad litem for
Baby Theresa, argued that
"to say that Baby Theresa's life should be taken for her organs is to say she's
not a person herself. If we say that Baby Theresa lacks potential, that she's
not a person ... then we're leaving the door open to other people that have no
n232. See Joel Feinberg, The Problem of Personhood, in Contemporary Issues in
Bioethics 108 (Tom L. Beauchamp
& LeRoy Walters eds., 2d ed. 1982) (describing view held by many that all human
beings are persons and also view that some human beings are not persons).
n233. See id.
n234. See id. Under this conception of personhood, Feinberg noted that
"all genetically human beings, including fetuses from the moment of conception,
have a right to life, the unjustified violation of which is homicide, and no
beings who are genetically non-human are persons." Id.
n235. See id.
n236. See id.; Friedman, supra note 62, at 952.
n237. Friedman, supra note 62, at 952.
n239. Id. at 952-53. Based on this understanding, some writers have argued that the
subset of persons is not entirely contained within the set of human beings. Id.
at 952 n.179. Some higher species of apes or other mammals possibly possess
these traits as well and should be considered persons. Id.
Thinkers like Joseph Fletcher argue that severe neurological impairment is not
compatible with personhood. Joseph Fletcher, Indicators of Humanhood: A
Tentative Profile of Man, Hastings Ctr. Rep., Nov. 1972, at 1-4. Fletcher wrote
"any individual of the species homo sapiens who falls below the I.Q. 40-mark ...
is questionably a person; below the 20-mark, not a person." Id.
n240. Friedman, supra note 62, at 952 (noting that anencephalics constitute class of
humans that are not persons).
n241. See Brandon, supra note 74, at 802-02; James W. Walters
& Stephen Ashwal, Organ Prolongation in Anencephalic Infants: Ethical
& Medical Issues, Hastings Ctr. Rep., Nov. 1988, at 20 (noting that high
valuation of individual human life has been commonplace in Western society).
n242. Immanuel Kant, Foundations of the Metaphysics of Morals, in Philosophical
Writings 94 (Ernst Behler ed., 1986).
n243. Friedman, supra note 62, at 951.
& Ashwal, supra note 241, at 21.
n246. Friedman, supra note 62, at 951-52.
In re T.A.C.P., 609 So. 2d 588, 589 & n.4 (Fla. 1992); Shewmon, supra note 57, at 1776.
n250. See Shewmon, supra note 57, at 1776.
n254. See id.
n258. Friedman, supra note 62, at 954.
n259. Feinberg, supra note 232, at 112-13; Friedman, supra note 62, at 954.
n260. Friedman, supra note 62, at 954.
n262. See Brandon, supra note 74, at 801; Shinnar
& Arras, supra note 37, at 738-39.
n263. Friedman, supra note 62, at 974.
n264. Ronald E. Cranford
& John C. Roberts, Use of Anencephalic Infants as Organ Donors: Crossing a
Threshold, in Pediatric Brain Death and Organ/Tissue Retrieval 195-96 (Howard
H. Kaufman ed., 1989) (stressing logical connection between use of anencephalic
and persistently vegetative patients as organ donors and forecasting that
present trends will soon bring society to point of considering both as equally
n265. Committee on Bioethics, supra note 64, at 1119.
n266. See id.; Shinnar
& Arras, supra note 37, at 740-41.
n267. Committee on Bioethics, supra note 64, at 1119.
n268. Id.; Shinnar
& Arras, supra note 37, at 740, 741.
n269. Friedman, supra note 62, at 954.
n270. Id. at 951-52.
n271. Task Force, supra note 37, at 672. The Medical Task Force noted the following
anencephaly is an embryonic defect that is present at birth, and the persistent vegetative
state is acquired because of various etiologies; (2) the neurologic deformation
is easily and convincingly observable in anencephalics, but the extent of
neurologic damage in a persistent vegetative state is not usually observable;
(3) doctors can diagnose
anencephaly with certainty, but the diagnosis of persistent vegetative state is more
difficult; and (4) patients in a persistent vegetative state tend to live much
longer, but survival in both conditions may depend upon the degree of medical
n273. Friedman, supra note 62, at 961-62; Shinnar
& Arras, supra note 37, at 738-39.
n274. Friedman, supra note 62, at 962.
n275. See Brandon, supra note 74, at 802 (quoting the statement of Dr. Joyce
Peabody, Loma Linda's Chief of Neonatology).
n277. Friedman, supra note 62, at 957.
In re T.A.C.P., 609 So. 2d 588, 594-95 (Fla. 1992) (citing Defining Death, supra note 92, at 2; Lori Andrews et al., National
Conference on Birth, Death, and Law: Section of Science
& Technology of the American Bar Association,
29 Jurimetrics J. 403, 421 (1989)).
n280. Id. at 595.
n281. See id. at 594-95.
n282. Id. at 593.
n283. See id. at 595.
n284. Id. at 592-93.
n285. Id. at 593.
n287. Id. at 593 n.9. For discussion of these allegedly analogous sources, see supra
T.A.C.P., 609 So. 2d at 593.
n289. U.S. Const. amend. IV. The Fourth Amendment's prohibition against unreasonable
searches and seizures has become the source of significant restrictions
regarding the right to bodily integrity. Friedman, supra note 62, at 940 n.114.
Schmerber v. California, 384 U.S. 757 (1966), the Court balanced the individual's interest in
"human dignity" against the state's need in requiring the intrusion. The Court noted that
"the integrity of an individual's person is a cherished value of our society," but it allowed the state to forcibly require Schmerber, who was suspected of
drunk driving, to submit to a blood test, and this did not violate his Fourth
Id. at 772. The Court did note, however, that although the Constitution allowed minor
intrusions into an individual's body under stringently limited conditions, it
did not permit more substantial intrusions. Id.
Jacobson v. Massachusetts, 197 U.S. 11, 28-29 (1905) (noting that state's interest in preserving public health legitimated
Schmerber, 384 U.S. at 771-72.
People v. Bracamonte, 540 P.2d 624, 631 (Cal. 1975) (holding that if prosecution could have shown that balloons allegedly filled
with narcotics that defendant swallowed would likely have broken open in
defendant's stomach and endangered his life, then stomach pumping would have
McFall v. Shimp, 10 Pa. D. & C.3d 90 (C.P. Allegheny County 1978).
n294. Case Comment, Coerced Donation of Body Tissues: Can We Live with McFall v.
40 Ohio St. L.J. 409, 410-11 (1979).
McFall, 10 Pa. D. & C.3d at 91. McFall died two weeks after the case was filed. Friedman, supra note 62, at
n296. See Black's Law Dictionary 777 (6th ed. 1990) (defining infancy as person who
is under age of legal majority, now generally 18 years old).
n297. See id. at 765 (defining incompetency as lack of legal qualifications or
fitness to discharge required duty and to show want of physical or intellectual
or moral fitness).
Bonner v. Moran, 126 F.2d 121, 123 (D.C. Cir. 1941) (holding that where proposed operation is not for benefit of child and not for
purpose of saving child's life, but actually for benefit of another, the
consent of the parent is necessary); President's Comm'n for the Study of
Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding
to Forego Life-Sustaining Treatment 212-15 (1983) hereinafter Deciding to
Forego Treatment (noting that the law presumes that parents are most
appropriate decisionmakers for children, including medical decisions concerning
minors, because children cannot effectively consent to medical treatment).
Courts will rarely review parents' decisions regarding medical choices for
their children if the following conditions exist: (1) the parents are choosing
from professionally accepted treatments; (2) the disease or condition is not
severe or life-threatening; (3) decisions about treatment cannot be delayed
until the child reaches maturity; and (4) the parents have a reasonable concern
that the risks of treatment outweigh its benefits, even if withholding
treatment can be life-threatening.
Id. at 213. Parents' discretion is limited, however, in that they cannot choose a course
of nontreatment that is clearly against the infant's best interests. Id. at 6.
"expose ... the child ... to ill health or death."
Prince v. Massachusetts, 321 U.S. 158, 166-67 (1944). There is no legal authority that supports the parents' autonomy to decide to
shorten or prolong their infants' lives in order to procure the infants' organs
for transplantation. Brandon, supra note 74, at 812.
In cases where the child's health or life is threatened by the parent's
decision, the state can intervene under its parens patriae power to protect the
interests of the infant. Paliokas, supra note 88, at 212. The courts have
traditionally held the well-being of the child as the paramount right. Id.
Strunk v. Strunk, 445 S.W.2d 145 (Ky. 1969);
Little v. Little, 576 S.W.2d 493 (Tex. Ct. App. 1979).
n300. See Paliokas, supra note 88, at 213-14. When reviewing decisions involving the
medical treatment of minors and incompetents, the courts have used a couple of
overlapping standards of review: the
"best interests" test and the doctrine of
"substituted judgment." Id. Under the best interests standard, the court first decides and then acts
to protect the best interests of the patient. Id. at 214. Under the doctrine of
substituted judgment, the court substitutes its own judgment for that of the
patient by first determining the individual's wants and needs and then deciding
in the same manner it believes the individual would decide if she was capable.
Strunk, 445 S.W.2d at 146, 149. Tommy was being kept alive by frequent treatment on an artificial kidney.
Id. at 145. That procedure could not be continued much longer. Id.
Id. at 146.
n303. Id. The Department of Mental Health of Kentucky argued as amicus curiae that
Tom's life was vital to Jerry's continued improvement at Frankfort State
Hospital and School. Id.
Id. at 149. While the procedure did involve some risk, the court did not find the
operation to be life-threatening to Jerry.
Id. at 148-49.
576 S.W.2d 493 (Tex. Ct. App. 1979).
Id. at 494.
Id. at 495.
Id. at 500. The court noted that in transplant cases, whether the courts use the terms
"substituted judgment" or not to describe the basis for the decision, the courts will consider the
benefits to the donor as a basis for permitting an incompetent to donate an
Id. at 498. The court pointed out that in Strunk, the Kentucky court considered the
doctrine of substituted judgment in some detail, but then based its decision on
the benefits that would accrue to the incompetent donor rather than on the
theory that the incompetent would have consented to the transplant operation if
he could have. Id. The Texas court adopted the same approach. Id.
226 N.W.2d 180, 180 (Wis. 1975). At the time of the hearing, Elaine was 38 and Richard was 39.
Id. at 181.
Id. at 180.
Id. at 182.
284 So. 2d 185 (La. Ct. App.), application denied,
284 So. 2d 338 (La. 1973).
Id. at 186.
n317. Id. Actually, she could have been sustained indefinitely by either of two
forms of relief: renal dialysis or kidney transplant. Id. The transplant was
preferred, but not necessary to preserve Beverly's life.
Id. at 187. With renal dialysis, she would have been dependent upon treatment three days a
week for six hours at a time, but she would have survived.
Id. at 186, 187.
Id. at 187.
n319. Id. The court referred to the Strunk decision, particularly that court's
conclusion relative to the facts supporting the best interests argument, but it
distinguished the facts in this case, arguing that these facts made it highly
unlikely that this transplant would be in Roy's best interest. Id. The parents
had argued that the transplant would be in Roy's best interest because, if
successful, Beverly could take care of Roy after the parents died, but the
court found this highly speculative and unlikely. Id.
n320. Each petitioner in the previously mentioned cases sought permission for the
removal of one kidney from the incompetent donor because the human being only
needs one kidney to live. Removal of both kidneys would clearly have been life
threatening, as would the removal of a heart or liver. Both of the latter
options would have been illegal - the first because it could not be conceivably
beneficial to the donor and the second because it is murder.
n321. For a discussion of Judge Moriarty's ruling, see supra note 16.
n322. See supra note 16.
n323. See supra note 16.
n324. See supra note 16.
In re T.A.C.P., 609 So. 2d 588, 593, 595 (Fla. 1992).
Id. at 595.
n327. Friedman, supra note 62, at 967. To say that governmental action violates
"substantive due process" means that the action unjustifiably abridges the Constitution's fundamental
constraints upon the content of what government may do to people in the name of
the law. Laurence H. Tribe, Substantive Due Process of Law, in Encyclopedia of
the American Constitution 1796 (Leonard Levy et al. eds., 1986). Thus,
substantive due process restricts government power, requiring coercive actions
of the state to have public as opposed to merely private goals, defining
certain means that government may not employ absent the most compelling
necessity, and identifying aspects of behavior that it may not regulate without
a clear showing that no less intrusive means could achieve the government's
legitimate aims. Id. While the Constitution does not specify the substantive
rights of personhood, the Bill of Rights does list certain rights that were
articulated in 1791, and the Ninth Amendment makes clear that the list is not
to be taken as exhaustive. Id. at 1797. Thus, the Supreme Court has had to mark
out our fundamental freedoms through the years. Id.
n328. U.S. Const. amend. XIV, 1. With the adoption of the Fourteenth Amendment in
1868, the Constitution explicitly required state deprivations of life, liberty,
or property to comply with the due process of law. Tribe, supra note 327, at
1797. In addition, through the years, most of the guarantees of the Bill of
Rights have been incorporated into the Fourteenth Amendment by the Court and
applied to the states as limitations on the state's exertion of power. Id. at
1800. Furthermore, the Court has embraced a number of rights under the
collective label of the right to privacy that it has also applied to the states
through the Fourteenth Amendment due process provision. Id.
n329. See Friedman, supra note 62, at 967.
n330. Id.; see
Simon v. United States, 438 F. Supp. 759, 761 (S.D. Fla. 1977) (citing
Stern v. Miller, 348 So. 2d 303 (Fla. 1977), for proposition that stillborn fetus is not
"person" within meaning of Florida Wrongful Death Act). Proponents would analogize the
status of the stillborn in Florida law to the anencephalic who is declared dead
by virtue of congenital deformity. This does not mean, however, that because
the stillborn fetus is not a person under the Florida Wrongful Death Act that
it is also not a person under the Fourteenth Amendment. Although this is the
conclusion that one commentator makes. See Friedman, supra note 62, at 967
n331. Friedman, supra note 62, at 967.
358 F. Supp. 1193, 1201 (D.R.I. 1973) (holding that statute that provided that human life commenced at instant of
conception and that human life at instant of conception was
"person" within the Fourteenth Amendment was unconstitutional on its face), cert.
416 U.S. 993 (1974).
n335. Id.; see also
Board of Regents of State Colleges v. Roth, 408 U.S. 564, 577 (1972) ("Property interests ... are not created by the Constitution. Rather they are
created and their dimensions are defined by existing rules or understandings
that stem from an independent source such as state law - rulings or
understandings that secure certain benefits and that support claims of
entitlement to those benefits.").
Doe, 358 F. Supp. at 1201.
n338. Id.; see also
Smith v. Organization of Foster Families for Equality and Reform, 431 U.S. 816, 845 (1977) (noting that unlike property interests in Roth, liberty interests in family
privacy had its source not in state law, but in intrinsic human rights as
understood in this nation's history and tradition);
Moore v. City of East Cleveland, 431 U.S. 494, 503 (1977) ("Appropriate limits on substantive due process come not from drawing arbitrary
lines but rather from careful
"respect for the teachings of history (and), solid recognition of the basic
values that underlie our society.'
Doe, 358 F. Supp. at 1201.
n340. See supra part II.D.
n341. See Friedman, supra note 62, at 968.
n342. See Laurence H. Tribe, American Constitutional Law 1308 (2d ed. 1988) (noting
that while human beings are intended beneficiaries of our constitutional
scheme, Constitution contains no discussion of the right to be a human being
and no definition of a person).
Roe v. Wade, 410 U.S. 113, 156-59 (1973).
Id. at 158.
n345. See Friedman, supra note 62, at 949-50, 968-69.
n346. See id. at 969.
n347. See id.
n349. See id.
Smith v. Organization of Foster Families for Equality and Reform, 431 U.S. 816, 845 (1977) (noting that Fourteenth Amendment
"liberty" interests in family privacy are rooted in intrinsic human rights as they have
been understood in this nation's history and tradition);
Moore v. City of East Cleveland, 431 U.S. 494, 503 (1977) (noting that substantive due process of Fourteenth Amendment protects sanctity
of family because institution of family is deeply rooted in this nation's
history and tradition).
n351. See supra part II.C.
n352. See Tribe, supra note 338, at 1796 (noting that for state to act in
contravention of fundamental right, it must have
"the most compelling necessity" and it must show that
"no less intrusive means could achieve government's legitimate public aims").
n353. See U.S. Const. amend XIV. (stating that
"no state shall ... deny to any person within its jurisdiction the equal
protection of the laws").
n354. See id.
In re T.A.C.P., 609 So. 2d 588, 595 (Fla. 1992).
id. at 594-95.
n358. See R.E. Cranford, Anencephalic Infants as Organ Donors, 24 Transplant
Proceedings 2218, 2218 (1992). Between 1988 and 1991, a total of 239 articles
appeared in the medical literature discussing the use of anencephalic infants
as organ donors. Id.
n359. See Task Force, supra note 37, at 672-73.
n360. See id. According to the Medical Task Force, the most successful paradigm for
organ harvesting was to place the anencephalic infant on maximal life-support
at birth and remove the organs as soon as technically possible without regard
to the presence or absence of brainstem function. Id.
n361. Cranford, supra note 358, at 2219.
n362. Id. Norman Fost, Director of the Program in Medical Ethics at the University
of Wisconsin Medical School, strongly favors a moratorium on transplantation
involving anencephalic infants until concerned parties can gather facts, debate
the reasons, and develop a consensus. Norman Fost, Organs from Anencephalic
Infants: An Idea Whose Time Has Not Yet Come, Hastings Ctr. Rep., Nov. 1988, at
n363. Cranford, supra note 358, at 2219.
n365. Id. at 2218. For a brief account of the case of Baby Gabriel, see George J.
Annas, From Canada with Love: Anencephalic Newborns as Organ Donors?, Hastings
Ctr. Rep., Dec. 1987, at 36.
n366. See Walters
& Ashwal, supra note 241, at 21 (arguing that respirator use with anencephalic
infants for the purpose of obtaining organs does not violate Kantian ethic).
Walters and Ashwal also argue for a respirator time limitation to preclude
anencephalic newborns from becoming organ farms for an unlimited number of
days. Id. at 23-24. This makes logical and moral sense because an indefinite
time limit on a respirator could be more tortuous on the anencephalic than
harvesting the infant's organs while it is still alive.
n367. See id. at 22. Deontological refers to any ethic that does not make the theory
of obligation entirely dependent on the theory of value; it holds that an
action could be known to be right without a consideration of the goodness of
anything, or at least the action may be right and be known to be so even though
it does not emanate from the agent's best motive. Dagobert D. Runes et al.,
Dictionary of Philosophy 76 (1981).
n368. See Walters
& Ashwal, supra note 241, at 22. A utilitarian ethic views the right act as the
act that, of all those open to the agent, will actually or probably result in
the greatest amount of pleasure or happiness in the world at large. Runes,
supra note 367, at 327.
n369. The discovery of the drug cyclosporine in 1976 revolutionized the chances for
successful organ transplantation because of its immunoregulative capability.
Leonard L. Bailey, Organ Transplantation: A Paradigm of Medical Progress,
Hastings Ctr. Rep., Jan.-Feb. 1990, at 27. Overall, it turned the 1980s into a
halcyon decade of organ transplantation with increasing numbers of transplants
and successful results. Id. This discovery lends credence to the assertion that
a new drug or method could be discovered that would maintain organ vitality in
the anencephalic until the infant's brainstem ceased to function. The key is
ongoing research and experimentation.
n370. See Committee on Bioethics, supra note 64, at 1118 (noting that, at this time,
a convincing case for changing law has not been made). The committee warned
"sufficient questions exist to counsel extreme caution before adopting a policy
permitting organ retrieval from anencephalic infants who retain brainstem
function." Id. at 1119; see also Shinnar
& Arras, supra note 37, at 741 (arguing that current dead donor rule and strict
whole brain death definition of death are good public policy and good ethics
and should remain cornerstone of future decisions in field).
n371. Judy Foreman, The Slippery Slope of Transplant Policy; Science Watch, Boston
Globe, Apr. 20, 1992, at 27.
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