From Quinlan to Schiavo:

medical, ethical, and legal issues in severe brain injury

ROBERT L. FINE, MD

T
he battle over the life and
death of Terri Schiavo was Table 1. Anatomic injury and functional status in different types of brain injury
only the most recent medical
ethics case to catch the public’s atten- Anatomic status Functional status
tion. This case asked both the individu- Upper Brain Sleep/ Body Gag/ Ability to
als involved and our society in general Condition brain stem wake cycle Eyes movement breathing suffer
to make moral judgments about the ap- Brain death – – – Closed – – No
propriateness of a decision to maintain Coma – ± – Closed – ± (usually –) No
or withdraw life-sustaining treatment. Open/
As a practicing medical ethicist and an Vegetative state – + + Reflex + No
roaming
observer of the case, I was startled by
Minimally Open/ None to
the degree of misunderstanding about ± + + + Yes
conscious state tracking purposeful
different types of brain injury and by
more than a few misstatements about Focal brain injury Closed and Variable
± + + + Yes
and dementia open/tracking purposeful
the medical facts of the case. Mrs.
Schiavo was described at various times
as comatose, brain dead, vegetative,
minimally conscious, locked in, and disabled. These are mutually suffering is an emotive event that requires consciousness. This
exclusive conditions. This failure of the media, politicians, and will become important in the moral analysis that follows the
even some physicians who should know better to accurately de- medical and legal review.
scribe Mrs. Schiavo’s medical condition was particularly disturb-
ing, because good medical ethics begins not with the discipline Coma
of ethics but with good clinical medicine. Appropriate moral Most serious brain injuries begin with a coma, which is best
judgments about medical treatment decisions cannot be made thought of as an “eyes-closed unconsciousness.” It is as if the
without first understanding the relevant clinical medicine. In this patient is sleeping but cannot be roused. Coma is usually not
article, I review the differences between coma, brain death, the permanent. Some patients go on to become brain dead; others
vegetative state, and other profound brain injuries. I then review enter the vegetative stage, become “locked in,” or enter the mini-
the Quinlan, Cruzan, and Schiavo cases to explore various legal mally conscious state; still others recover completely. Patients
aspects and close with reflections on some of the ethical issues who recover may be normal or may have a functional deficit such
related to treatment of patients with profound brain injuries. as paralysis, weakness, or cognitive impairment.

TYPES OF BRAIN INJURY Brain death

Coma, brain death, vegetative state, locked-in state, and
minimally conscious state are separate and distinct conditions,
although a patient may pass from some of these states to another.
For example, a patient may present in a coma, then pass through
the vegetative state to the minimally conscious state, and finally
return to a state of normalcy. In some cases, this transition may
be so rapid as to make the individual states barely noticeable, as if
the patient went from coma to normal all at once, while in other
cases there may be slow progress or no progress at all. The parts
of the brain injured and the patient’s basic neurological functions
in these states are summarized in Table 1. When reviewing this
table, it is worth noting that unconscious patients cannot suffer;
Brain death, another common sequela of serious brain injury,
is the irreversible loss of the clinical function of the whole brain:
the cortex (responsible for motor and cognitive function), the
midbrain (which might be thought of as integrating higher and
lower centers in the brain), and the brain stem (responsible for
From the Office of Clinical Ethics, Baylor Health Care System, and Department of
Internal Medicine, Baylor University Medical Center, Dallas, Texas.
Presented at internal medicine grand rounds, Baylor University Medical Center,
April 5, 2005.
Corresponding author: Robert L. Fine, MD, 3434 Swiss Avenue, Suite 205, Dallas,
Texas 75204 (e-mail: rl.fine@BaylorHealth.edu).

BUMC PROCEEDINGS 2005;18:303–310 303

 Table 2. Bedside and apnea testing for brain death
Bedside testing
■ Absent grimace or withdrawal response to pain
■ Pupils unresponsive to light
■ Absent corneal reflex
■ Absent gag reflex
■ Absent cough reflex to suctioning
■ Absent oculocephalic response: the eyes turn with the head; no eye
movement
■ Absent vestibulo-ocular (caloric) response: the eyes fail to deviate
away from the side irrigated with ice water; no eye movement
PCO2 indicates partial pressure of carbon dioxide; PO2, partial pressure of oxygen.
vegetative functions such as sleep-wake cycles and breathing).
Brain death is a product of modern technology, made possible
by mechanical ventilators and cardiopulmonary resuscitation.
It was first described in the medical literature in 1959 by two
French neuropsychologists who referred to le coma depasse, or a
state beyond coma (1). In America, we often refer to the Harvard
Medical School definition of irreversible coma as the definition
for brain death. This definition was proposed in 1968 and remains
the gold standard (2). Some have expressed concern that one of
the driving forces behind the creation of the Harvard criteria for
brain death was the need for organs to transplant. This concern
is probably valid but does not in itself invalidate or render useless
the concept of whole brain death.
The diagnosis of brain death is a clinical judgment by the
physician based upon the total absence of all brain function. The
cause should be reasonably established and reasonably irrevers-
ible. It may be related to a primary brain injury such as trauma or
brain hemorrhage or to nonneurological illness such as cardiac
arrest with resultant anoxic brain damage. The diagnosis may be
confounded by a number of factors, including drug intoxication,
metabolic/endocrine disturbance, severe facial trauma, preexist-
ing pupillary abnormalities, chronic carbon dioxide retention,
and hypothermia.
Texas law does not mandate any particular test for the diag-
nosis of brain death. A number of tests are available, including
bedside testing and apnea testing (Table 2). Apnea testing is useful
because other technological tests lack both its 100% sensitivity
and 100% specificity (3).
Brain death is legal death in all 50 states. However, two states,
New Jersey and New York, have exceptions, initially based on
cultural sensitivity to the belief of the orthodox Jewish com-
munity in a cardiorespiratory standard of death. One does not
have to be an orthodox Jew to believe that both heart and lung
function must cease before a person may be considered dead.
Many neurologists and ethics consultants have worked with such
families. A particularly interesting example of this phenomenon
occurred earlier this year in Utah. Jessie Koochin, a 6-year-old
boy with a brain tumor, met all of the standard criteria for brain
death and was declared brain dead by multiple doctors. His family
rejected the entire notion of brain death and persuaded a state
judge in Utah to declare that he be kept alive on a mechanical
ventilator despite meeting the legal criteria for brain death. This
represents a striking example of a judge rejecting established law
304 BAYLOR UNIVERSITY MEDICAL CENTER PROCEEDINGS
Apnea testing
■ Pretest criteria: euvolemia, temperature ≥36.5ºC, systolic blood pressure
≥90 mm Hg, PCO2 ≥40 mm Hg
■ Preoxygenate with 100% oxygen to achieve PO2 >200 mm Hg, disconnect
the ventilator (or set rate at 0), deliver 100% oxygen at 6 L/min by
cannula into the endotracheal tube
■ Test arterial blood gases at 8 to 10 minutes
■ Test is positive if no respiratory movement is present and PCO2 ≥60 mm Hg
■ Test is inconclusive if PCO2 <60 mm Hg, systolic blood pressure <90 mm Hg,
oxygen saturation <80%, or cardiac arrhythmia is present
Table 3. Criteria for clinical diagnosis of a vegetative state*
■ No interaction with others or awareness of self when awake
■ No comprehension or expression of language
■ No sustained and reproducible voluntary or purposeful response to
external stimuli
■ Spastic limbs may move nonpurposively
■ Noxious stimuli may cause reflex withdrawal
■ Some emotive events may occur, such as smiles or grimaces, but not as a
reproducible response to stimuli
*From reference 5.
in an effort to placate social and political pressures. I personally
find this a worrisome phenomenon if it were to be repeated in
other jurisdictions. Nevertheless, there is no legal nor moral ob-
ligation to maintain treatment for brain-dead patients. Across
Baylor Health Care System, we will maintain organ-sustaining
treatments for 24 to 48 hours to allow family members time to
gather and say goodbye to their loved one.
Vegetative state
The vegetative state, another product of modern technol-
ogy, was first described in 1972 (4). The vegetative state is best
understood as an “eyes-opened unconsciousness”; there is a dis-
association between wakefulness and awareness. While patients
may appear awake, there is a lack of evidence that the upper
brain receives or projects information. The upper brain and the
midbrain are not integrated in function with the brain stem or the
rest of the body, although the brain stem continues to manage the
vegetative functions. This is the condition that Karen Quinlan,
Nancy Cruzan, and Terri Schiavo were in following their serious
brain injuries up until the moment of their deaths.
The most authoritative published data on the vegetative
state come from the Multi-Society Task Force on the Persistent
Vegetative State. This group established definitive diagnostic
criteria and published authoritative outcomes data on 700 pa-
tients (5, 6).
As with the diagnosis of brain death, the diagnosis of a vegeta-
tive state is a clinical judgment based on several criteria (Table 3).
The notion of a “sustained and reproducible voluntary response”
is important in the diagnosis. Hope is eternal in families. They
want to believe that their loved one is conscious, and they report
VOLUME 18, NUMBER 4

Table 4. 1-year outcomes in patients in the vegetative state*
Outcome 1 year later
Patient group Dead Vegetative Conscious
Traumatic causes of vegetative state
Vegetative at 1 month 28% 18% 54%
Vegetative at 3 months 31% 30% 39%
Vegetative at 6 months 28% 53% 19%
Nontraumatic causes of vegetative state
Vegetative at 1 month 47% 39% 14%
Vegetative at 3 months 36% 58% 6%
Vegetative at 6 months 18% 81% 1%
*From reference 6.
instances when their loved one responds to them. As an ethics
consultant, I often try to be at the bedside with family members
who believe their loved one is responding to them. I insist that we
first remain quietly at the bedside without disturbing the patient
during a wake cycle for prolonged periods of time. These patients
may have a variety of nonpurposeful movements. It is important
for families to see these movements occurring in the absence of
any external stimuli before they try to elicit a purposeful move-
ment; otherwise, to the untrained eye, these patients may appear
to be interactive when they are not. Truly vegetative patients will
not have reproducible responses to stimuli.
The prognosis for recovery is a key concept and is an essential
feature of the moral analysis dealing with patients in a vegeta-
tive state. Prognosis is determined by the cause of the injury, the
length of time the patient has been in the vegetative state, and
comorbid conditions. Posttraumatic vegetative patients have a
better chance for some recovery than anoxic brain injury veg-
etative patients (Table 4). Although not reflected in the table,
the task force found no returns to consciousness in patients like
Quinlan, Cruzan, and Schiavo, who had been vegetative with
an anoxic injury for over 2 years.
The duration of the vegetative state also affects nomenclature.
A duration >1 month is said to be persistent. When the cause of
the vegetative state is nontraumatic—such as an anoxic injury
after cardiopulmonary resuscitation—a duration >3 months is
said to be permanent, but when the cause of the vegetative state
is traumatic, a patient must remain vegetative for >12 months
before the condition is defined as permanent. The distinction
between outcomes from posttraumatic versus anoxic brain injuries
may play into the moral decisions we must face when confronted
by profound brain injury.
Finally, comorbid conditions are important factors in deter-
mining prognosis. There is a significant difference in survival
for the otherwise healthy 25-year-old vegetative patient and the
75-year-old vegetative patient who also has multiorgan system
failure. Younger patients, in particular, may survive for decades
with artificial nutrition and hydration (ANH). Although these
patients may be cared for at home, they often end up in nursing
homes. Unless the family is quite wealthy or the patient has ex-
traordinary insurance, the patient often winds up in a Medicaid
nursing home where the quality of care can be marginal, with
OCTOBER 2005 FROM QUINLAN TO SCHIAVO: MEDICAL, ETHICAL, AND LEGAL ISSUES IN SEVERE BRAIN INJURY
one registered nurse for every 20 or 30 patients. If ANH is not
withdrawn, these patients typically die of pneumonia, urinary
tract infections, or sepsis related to skin breakdown.
Over the years, a variety of treatments have been attempted
to try to reverse a vegetative state. None of the treatments has
been successful enough to become routine practice. Some neona-
tologists have suggested promising experimental outcomes with
neural stem cells and predict that clinical applications may be
available in the next decade or two. It is of more than passing
interest that many people who opposed the withdrawal of ANH
in the Schiavo case also oppose stem cell research, which might
one day help treat such patients.
Locked-in state
In the locked-in state, consciousness is preserved but the
patient is paralyzed except for eye movement and blinking. A
particularly important book on this condition is The Diving Bell
and the Butterfly: A Memoir of Life in Death (7). When young
physicians tell me they wish to study clinical ethics and perhaps
work as an ethics consultant, I insist that they read this book.
The author, Jean-Dominique Bauby, wrote this book one letter
at a time while he was in the locked-in state. Born in 1952, he
became locked in as a result of stroke on December 8, 1995, and
died on March 9, 1997. A therapist set up a letter board with the
letters of the alphabet arranged in the order they are most com-
monly used in the French language. The therapist then pointed to
one letter at a time on this chart until Jean-Dominique blinked,
indicating the letter he wanted. The book is an extraordinary tale
of the desire to survive and live in this condition.
In my 25 years in medicine, I’ve probably communicated with
four or five patients who were locked in, spending many hours
over many days with them to determine their wishes. None of
these patients wanted to stay alive in that condition once they
comprehended that they were going to be locked in. However,
some physicians report patients who wish to survive in a locked-
in state.
Minimally conscious state
Late in the course of the Schiavo case, people such as Senator
Bill Frist looked at the videos of Mrs. Schiavo and offered the
opinion that she was minimally conscious. One cannot diagnose
the minimally conscious state or any other severe brain injury by
viewing a videotape of a patient. There is no consensus yet within
the neurology community about a definition of the minimally
conscious state, but the general standards are as follows:
• Sleep-wake cycles exist, just as in the vegetative state.
• Arousal levels range from obtundation to normal arousal.
• There is reproducible but inconsistent evidence of perception,
communication ability, and/or purposeful motor activity.
• Visual tracking is often intact but typically inconsistent.
• Communication ranges from none to unreliable, with incon-
sistent yes-no responses, verbalizations (typically fewer than
six words), and gestures (8).
Although technically the minimally conscious state represents a
less severe degree of brain malfunction than the vegetative state,
as explained above, I fear it represents a state of greater suffering
and thus greater moral jeopardy for those who insist we should
keep patients alive in this condition.
305
LEGAL CASES INVOLVING A PERSISTENT VEGETATIVE STATE
Plato said, “Ethics belongs to the body polis”—that is, to
the political body, the community. In the modern arena, what
a society decides is ethical is ultimately
determined through politics, and we have
seen that played out in the Terri Schiavo
case in a dramatic fashion.
I will focus on three cases, Karen Quin-
lan, Nancy Cruzan, and Theresa Schiavo.
In the first case, that of Karen Quinlan
who became vegetative in 1975, legal ar-
guments continued for about 1 year. In the
second, that of Nancy Cruzan who became
vegetative in 1983, legal arguments went Figure 1. The headstone for Nancy Cruzan. Photo
on for about 3 years. In the third case, that courtesy of Chris Cruzan White.
of Terri Schiavo who became persistently
vegetative in 1990, legal arguments started in 1998 and continued
for 7 years before final resolution. This progressive elongation
of medicolegal debate in each successive case is somewhat of a
worrisome trend.
The first “right-to-die” case: Karen Quinlan
In 1975, Karen Quinlan had a “respiratory arrest.” (I consider
this term to be a modern euphemism for death; before cardio-
pulmonary resuscitation was invented, when a patient stopped
breathing, life was over.) She was resuscitated and left in what
was initially described in the records as a coma. Later it was
determined she was vegetative. Karen’s parents asked that her
mechanical ventilator be removed so that she might die, and the
doctors refused. In the legal documents, the doctors indicated
that they thought removing life-sustaining treatment was the
equivalent of murder; they felt they had an inherent duty to
protect life and specifically to keep Ms. Quinlan alive.
The case was eventually adjudicated in the New Jersey Su-
preme Court. In 1976, this court supported the parents in their
request to allow removal of the ventilator, based on the right to
privacy. The court found that families are adequate surrogates
for incapacitated patients who did not and could not make their
wishes known. Remember that although living wills are now
fairly common, they were rarely used in the 1970s as a means
for patients to make their wishes known. California was the first
state to provide for living wills as a matter of law in 1975, and
Texas was the second state to do so in 1976.
The court also determined that quality of life is a legitimate
factor for consideration when life and death hang in the medical
balance. The judges acknowledged that physicians had a general
interest in preserving life; however, they went on to note a right
to refuse life-sustaining treatment, a right that increased as the
“chance for a return to a cognitive sapient existence declines.”
This was a determinative values judgment. These judges were
expressing in their judicial ruling the value of something near and
dear to their own personal lives: the value of intellect and cogni-
tion over other attributes of human existence. Not all persons may
place such importance on cognition; however, most do.
The judges in the Quinlan case also argued in favor of judicial
restraint and noted that such cases do not generally belong in
court. They mandated the formation of a “prognosis commit-
tee,” which was a concept that evolved into what we today
306 BAYLOR UNIVERSITY MEDICAL CENTER PROCEEDINGS
refer to as a clinical ethics committee. Even several decades
after this ruling, no clinical ethics committee was consulted in
the Schiavo case. At Baylor, members of our ethics consultation
service have worked with many a divided
family. Thankfully, in 20 years of ethics
consultation, we have never come across
a family so divided that we could not
eventually achieve some sort of reason-
able resolution.
Although the judges ruled in favor of
the family and the mechanical ventilator
was withdrawn, Karen Quinlan turned out
not to be dependent on the ventilator.
Remember that she was in the vegetative
state, and such patients do not require
mechanical ventilation in the absence of
heart or lung disease. Her parents did not request removal of her
“feeding tube,” and thus she lived for 10 years in a nursing home
supported by ANH before dying from pneumonia.
The first “right-to-die” case to reach the US Supreme Court:
Nancy Cruzan
Nancy Cruzan’s headstone tells a story (Figure 1). The electro-
cardiogram line on it says “thank you” before becoming flat. The
headstone indicates that she was born on July 20, 1957; departed
on January 11, 1983 (the day she had a car wreck and was found
dead by the side of the road); and was at peace on December 26,
1990 (the day her heart and lungs were finally allowed to stop).
The case of Nancy Cruzan was the first right-to-die case to make
it to the US Supreme Court.
Nancy Cruzan was already breathing without the aid of a
mechanical ventilator by the time it became apparent she was
persistently vegetative. At this point, her parents began efforts to
have her feeding tube removed so that she might be allowed to
die. Physicians caring for Ms. Cruzan refused this parental request
and were supported in their refusal by then Missouri Governor
John Ashcroft.
The Supreme Court ruled on the case in 1990, the same year
Terri Schiavo suffered a cardiac arrest. The ruling was complex,
but the ultimate result was that the parents were allowed to direct
the withdrawal of ANH and allow Nancy to die. The court ruling
supported the idea that patients have a fundamental right to re-
fuse life-sustaining treatments but added that states may regulate
the circumstances under which life-sustaining treatments may
be withdrawn when the patient cannot speak on his or her own
behalf. For example, states may decide the level of proof about
a patient’s wishes needed to support a decision to withdraw life-
sustaining treatment. Interestingly, the level of proof in Missouri
for Cruzan proved be the same as in Florida for Schiavo; there was
no living will in either case. However, while there was disagree-
ment among family members in the Schiavo case, there was no
family disagreement in the case of Nancy Cruzan.
The Theresa Marie Schiavo case
In February 1990, Terri Schiavo had a cardiac arrest. Al-
though we will never know exactly why this happened, I suspect
it was related to bulimic behaviors. We do know that at one
point this patient weighed over 200 lbs; at the time of her car-
VOLUME 18, NUMBER 4
diac arrest, she weighed about 110 or 120 lbs. I don’t know how
one achieves such weight loss in the absence of surgery or severe
caloric restrictions, which might be achieved through bulimic
behaviors. Interestingly, bulimia is sometimes linked psychologi-
cally to parental control issues, which seemed to be a factor as
the case played out in the courts and media.
In June 1990, the court appointed Michael Schiavo, Terri’s
husband, as her legal guardian, and Terri’s parents, Mr. and Mrs.
Schindler, did not object. The Schindlers and Michael Schiavo
were partners in Terri’s care for 4 years. In November 1990, Mi-
chael Schiavo took his wife to California for experimental therapy,
including placement of a thalamic stimulator implant. From No-
vember 1990 to April 1994, Terri also received physical, occupa-
tional, and speech therapy at two rehabilitation facilities.
In January 1993, a malpractice claim against an obstetrician-
gynecologist possibly related to Terri’s suggested eating disorder
resulted in a $1 million settlement. Michael Schiavo was given
$300,000 for loss of consortium, and $700,000 was placed in trust
for Terri Schiavo’s care.
In March 1994, 4 years after entering the vegetative state and
2 years after completion of both experimental and rehabilitative
therapy, Terri Schiavo was transferred to a nursing home.
Finally, in May 1998, 8 years after Terri entered the vegeta-
tive state—which was now clearly permanent—Michael Schiavo
filed his first petition asking a court to allow removal of Terri’s
gastrostomy tube. His position was that Terri would not want
to be kept alive in a vegetative state. Terri’s parents took the
opposite position. The court did not rush to judgment. After
almost 2 years of testimony with methodical due process, Judge
Greer (a Republican) ruled that there was “clear and convinc-
ing evidence”—i.e., the highest standard of evidence in a civil
trial—that Terri was in a permanent vegetative state and that she
would choose to discontinue life-prolonging medical care.
During the course of the trial, the Schindlers used two expert
witnesses. One was William S. Maxfield, a radiologist from the
Manatee Diagnostic Clinic in Florida and formerly of the Max-
field Clinic and Hospital of Dallas. Dr. Maxfield stated: “In my
opinion, there’s a significant probability that she would improve
with hyperbaric oxygen therapy based on what I have seen in
the CT of the brain, the SPECT scan, and my observation and
examination of the patient.” Based on prognostic data available
in the peer-reviewed literature for patients who have been in the
vegetative state for 8 years, using the words “significant probabil-
ity” is extraordinary. Judge Greer responded: “It is interesting to
note the absence of any case studies since this therapy is not new
and this condition has long been in the medical arena.”
The second expert chosen by Terri’s parents was William
Hamasfar, MD, a board-certified neurologist from the St. Peters-
burg Medical Clinic and a proponent of a privately patented
vasodilatory therapy for cerebral ischemia. Dr. Hamasfar gave
Terri Schiavo 105 commands and asked her 61 questions. He
also had Mrs. Schindler ask Terri questions and give commands.
Based on 12 hours of videotape, Judge Greer stated, “The court
saw few actions that could be considered responsive.” The judge
continued:
He [Dr. Hamasfar] testified that he has treated about 50 patients in
the same or worse condition than Terri Schiavo since 1994 but he
offered no names, no case studies, no videos and no test results to
OCTOBER 2005 FROM QUINLAN TO SCHIAVO: MEDICAL, ETHICAL, AND LEGAL ISSUES IN SEVERE BRAIN INJURY
support his claim that he had success in all but one of them. If his
therapy is as effective as he would lead this court to believe, it is
inconceivable that he would not produce clinical results of these
patients he has treated. And surely the medical literature would be
replete with this new, now patented, procedure.
Michael Schindler chose as expert witnesses Ron Cranford,
MD, professor of neurology at the University of Minnesota, widely
recognized within the profession as an expert on the vegetative
state, and Melvin Greer, MD, professor of neurology at the Uni-
versity of Florida and former chief of the Department of Neurol-
ogy at the University of Florida. The judge picked an independent
expert as well: Peter Bambakidis, MD, professor of neurology at
Case Western Reserve University and clinical physician at the
Cleveland Clinic. All three of these board-certified academic
neurologists concluded that Terri Schiavo was in a persistent
vegetative state and in fact a permanent vegetative state, given
the amount of time that had passed since the injury. They said
she had no chance of recovery. Medically, Terri Schiavo’s brain
had little if any normal tissue; most of her brain had been replaced
by liquid (Figure 2). Dr. Cranford further indicated that Terri’s
electroencephalogram was “flat line,” which is very unusual in
the vegetative state and technically indicates whole brain death,
even though it is clear she was not whole brain dead.
In addition to these expert witnesses, all physicians who ever
treated Terri Schiavo, both before and after legal actions were
taken, always wrote in their medical notes that she was in the
vegetative state.
After the ruling, Terri’s parents appealed. Over the next 5
years, there were multiple court challenges. All came to the same
conclusion. ANH was discontinued twice and then restarted, in
2001 and 2003. On October 21, 2003, the Florida House and
Senate passed “Terri’s Law,” permitting Governor Bush to have
Terri Schiavo’s feeding tube reinserted. This may have been the
first time a governor directed that a specific medical act be car-
ried out on a patient. The Florida Supreme Court struck down
Terri’s Law on September 23, 2004, not on the basis of either
medical facts or medical ethics, but on the basis of separation
of powers. It is of note that we physicians, and medical ethicists
in particular, approach cases such as this from a medical and
ethical perspective. We like to speak of the medical facts and
relate them to such moral concepts as benefit/burden analysis
or proportionality. Note the court’s language, however, which
focused solely on issues of law:
We are called upon to make a collective, objective decision concern-
ing a question of law. Each of us, however, has our own family, our
own loved ones, our own children . . . but in the end, this case is
not about the aspirations that loving parents have for their children.
. . . Rather, as our decision today makes clear, this case is about
maintaining the integrity of a constitutional system of government
with three independent and coequal branches. . . . If the Legislature
with the assent of the Governor can do what was attempted here,
the judicial branch would be subordinated to the final directive of
the other branches. . . . The essential core of what the Founding
Fathers sought to change from their experience with English rule
would be lost, especially their belief that our courts exist precisely
to preserve the rights of individuals, even when doing so is contrary
to popular will.
Although I personally agree with the Florida Supreme Court
justices’ final ruling, it is worth noting that discontinuing ANH
307
 a b
Figure 2. Computed tomography scans of (a) a normal brain and (b) Ms. Schiavo’s
brain in 2002. The scan shows extensive cortical regions filled with spinal fluid.
The bright spot near the center is an intrathalmic stimulator placed in December
1990. Image courtesy of Dr. Ron Cranford.
in this case was not contrary to the public will, as reflected in
various opinion polls.
From October 2004 to February 2005, there were further legal
maneuvers, each one decided in favor of the stance of Terri’s
husband. The gastrostomy tube was removed on March 18, 2005,
at about 1:00 PM. On March 21, 2005, the US Congress passed
and President Bush signed a federal law directing a review of the
Terri Schiavo case in federal courts—disagreeing with 7 years of
rulings by 19 judges and 6 different courts, including three appeals
to the US Supreme Court. This new review came to the same
conclusion reached by all other judges. Federal District Judge
James Whittemore declined to direct that ANH be restarted.
Other federal judges, including the appellate court by a vote of 10
to 2 and the US Supreme Court, supported the decision of Judge
Whittemore, who was supporting Judge Greer. Terri Schiavo died
peacefully and painlessly from dehydration that she could not
feel on March 31, 2005.
THE ETHICS OF ARTIFICIAL NUTRITION AND HYDRATION
Medical ethics, at least as practiced at the bedside in the form
of clinical ethics, properly starts with medical science and then
moves to human behavior, spirituality, health law, and finally
moral argumentation. That’s why moral argumentation appears at
the end of this article. Much of the ethical debate in the Schiavo
case has focused on ANH for patients in the vegetative state.
Although many moral traditions have contributed to that debate,
it is particularly helpful to consider the Catholic tradition. In the
field of clinical ethics, we often appeal to concepts such as benefit
and burden analysis, proportionality, or double effect, concepts
commonly associated with the Catholic moral tradition. In addi-
tion, Terri Schiavo, Karen Quinlan, and Nancy Cruzan were all
Catholic. The Catholic tradition offers two competing viewpoints
on the morality of withholding or withdrawing ANH.
View #1: Artificial nutrition and hydration is morally obligatory
On March 20, 2004, Pope John Paul II delivered a papal al-
locution on the vegetative state and other brain injuries. In this
statement, he pronounced that ANH is morally obligatory and
must be maintained in most cases of persistent vegetative state (9).
This pronouncement has been quite controversial. My personal
opinion as a physician clinical ethicist is that the pope’s medical
308 BAYLOR UNIVERSITY MEDICAL CENTER PROCEEDINGS
ethical arguments are fatally flawed not because his moral world-
view is in any way flawed but because he did not start with a correct
understanding of the medical science related to brain injuries.
First, the pope stated that the prognosis for persistent vegeta-
tive state is not certain, and he used this statement to justify much
of his moral argument. There are times, especially early in the
course of a vegetative state, when some uncertainty about prog-
nosis clearly exists and physicians should not rush to judgment.
However, at other times, the vegetative state is obviously and
unequivocally considered permanent, as reflected in the work of
the Multi-Society Task Force on the Persistent Vegetative State
(5, 6). Furthermore, relatively few patients in the vegetative state
have only a profound brain injury. Many have other significant
medical problems, which have definite prognostic implications.
Second, the pope stated that ANH is “ordinary and propor-
tionate, and as such morally obligatory” as long as it obtains the
goals of “providing nourishment to the patient” and “alleviating
suffering.” Concepts such as ordinary and proportionate are im-
portant to most of us in clinical ethics and are always understood
in relationship to the goals of medical action, especially although
not exclusively the patient’s goals. Once again, I feel the pope
did not have the medical facts clear when making a moral pro-
nouncement about medical treatment. ANH definitely provides
nourishment, but it is not nourishment that alleviates suffering
because vegetative patients don’t suffer. Such patients lack func-
tion in those parts of the brain necessary for consciousness and
thus for the experience of suffering.
Third, Pope John Paul II said that withdrawal of ANH is
“euthanasia by omission . . . which by its very nature and inten-
tion brings about death with the purpose of eliminating all pain.”
Again, I believe this is not a medically accurate statement. The
purpose in withdrawing ANH is not the removal of pain that can-
not be experienced by the patient. Those who argue in favor of
withdrawal of ANH from vegetative patients typically do so based
upon a number of beliefs, including respect for patient autonomy
and the right to be left alone, or a belief that persons created in
the divine image should not be maintained in a mindless state of
existence, which they perceive as anything but divine.
Finally, the pope stated that feeding tubes and the nutrition
and hydration they provide are not “technological support,” nor
do they represent a “medical act.” I don’t think I’ve ever met a
gastroenterologist or surgeon who placed a gastrostomy tube who
believed they were not performing a medical act.
Pope John Paul II did express concern about the slippery
slope. I share that concern. And he expressed a strong fear that
ANH is withdrawn not to benefit the patient but to lessen so-
cietal and family burdens. This is a legitimate moral concern
worth considerable examination; however, other statements in
Catholic thinking indicate that it is acceptable to lessen familial
and societal burdens.
View #2: Artificial nutrition and hydration is morally optional
The view that ANH is morally optional and may be with-
drawn in most cases of persistent vegetative state was common
in much of Catholic thinking prior to March 2004.
Part of that earlier view is based upon what is for some the
sacred notion that the spiritual life is more important than the
physical life. Pope Pius XII expressed this in 1957, 2 years before
VOLUME 18, NUMBER 4
le coma depasse was described. He said: “Life, health, all temporal
activities are in fact subordinated to spiritual ends” (10), sug-
gesting that our bodies are here to support our spirit. Fr. Kevin
O’Rourke has argued that ANH is “not only futile, because it is
ineffective in helping the patient pursue the higher goals of life,
but is excessively burdensome because it maintains persistent
vegetative state patients in a condition in which this pursuit will
never again be possible” (11).
The Texas Catholic Bishops also addressed the moral appro-
priateness of ANH in 1990:
The morally appropriate foregoing or withholding of artificial nu-
trition and hydration from a permanently unconscious [vegetative]
person is not abandoning that person. Rather, it is accepting the fact
that the person has come to the end of his or her pilgrimage and
should not be impeded from taking the final step (12).
Fr. Richard McCormick made this observation:
Imagine a 300-bed Catholic hospital with all beds supporting PVS
patients maintained for months, even years, with gastrostomy tubes.
. . . An observer of the scenario would eventually be led to ask: Is
it true that those who operate this facility actually believe in life
after death? (13)
Although these alternative views do not carry the weight of papal
authority within Catholicism, I believe they are important moral
arguments that non-Catholics may wish to seriously consider.
Many devoutly religious persons have told me during my medical
practice that they prefer a life in heaven to a life in a profoundly
brain-injured state.
LEGAL ISSUES UNDER THE TEXAS ADVANCE DIRECTIVES ACT
Vegetative patients are at a minimum covered under the ir-
reversible illness clause of the Texas Advance Directives Act.
Comorbid conditions such as advanced organ failure of any sort
may qualify the patient as terminally ill as well. In Texas, life-
sustaining treatments, including ANH, may be withdrawn with
consent from either terminal or irreversibly ill patients. Ethics
committees may be consulted if disagreement arises and may ap-
prove withdrawal of life-sustaining treatment when treatment
is futile in certain circumstances following the extrajudicial due
process mechanism provided by Texas law (14).
The futility of treatment, however, depends on the situation.
Recall that Texas law does not use the term “medical futility”
but rather the term “medically inappropriate” when discussing
whether or not a treatment may be withheld or withdrawn from
a patient. Clinical judgment is of paramount importance when
considering such issues. Our ethics committee supports the idea
that when the persistent vegetative state is an isolated condi-
tion, life-sustaining treatment such as ANH may be considered
qualitatively futile. That is, treatment such as ANH may keep the
patient alive and is thus not physiologically futile, but it does not
make the patient well, nor can the patient perceive any qualita-
tive benefit of being alive. When other comorbid conditions such
as multiple organ failure are present, ANH may be considered
not only qualitatively futile but physiologically futile in that the
patient is going to die from organ failure while in the vegetative
state even if ANH is maintained.
In cases of qualitative futility, the ethics committee will
counsel the family, explaining that keeping someone alive in the
vegetative condition is not the purpose of medicine or necessar-
OCTOBER 2005 FROM QUINLAN TO SCHIAVO: MEDICAL, ETHICAL, AND LEGAL ISSUES IN SEVERE BRAIN INJURY
ily a proper goal for human existence. However, the committee
will not support the forced withdrawal of a gastrostomy tube in
these cases.
On the other hand, in cases of physiologic futility—with
organ systems failing and requiring the use of other interven-
tions—the ethics committee will help the treating physicians
withdraw life-sustaining treatment.
A CLINICAL ETHICAL ANALYSIS OF THE TERRI SCHIAVO CASE
In formal ethics consultation, we often engage in moral analy-
sis by appealing to prima facie principles—moral action guides
that people commonly agree are true and good. How do these
principles—autonomy, beneficence, nonmaleficence, fidelity, and
distributive justice—apply to the Terri Schiavo case?
Autonomy
Autonomy, or self-governance, is grounded in our cognition
and is thus lost in vegetative, minimally conscious, and brain-dead
patients unless the patient prepared a written or oral directive.
Oral directives are subject to significant challenge, but written
directives are difficult to overturn. The Schiavo case would not
likely have occurred as it did if Terri Schiavo had a written living
will. I urge everyone to prepare living wills.
The principle of autonomy leads to the notion that surro-
gates should follow the standard of “substituted judgment,” which
means making the decision the patients would have made for
themselves, but this does not always happen. Michael Schiavo
stated that his wife would not have wanted to go on in a persistent
vegetative state, yet he waited a long time to make that claim;
thus, he could be said to have ignored his wife’s wishes and vio-
lated her autonomy for many years. Terri Schiavo’s parents stated
that even if she had had a living will, they would have ignored it.
Under cross-examination during trial, her parents also stated that
they would have amputated all four of her limbs and sought open-
heart surgery if needed to keep her alive. Again, this sentiment
represents a clear violation of the principle of autonomy.
Beneficence and nonmaleficence
Beneficence (promoting good) and nonmaleficence (avoid-
ing harm) for a specific patient may be difficult to balance in
the absence of patient guidance. Vegetative patients experience
neither burdens nor benefits. They show no signs of joy or pain
in a reproducible fashion. There is no evidence that vegetative
patients experience hunger, thirst, or physical, psychological,
social, or spiritual pain. Suffering is a conscious experience, and
vegetative patients lack consciousness.
Withholding ANH is associated with progressive loss of
wakefulness as the patient slips back into a coma before death.
There is no way to assess for psychological, social, or spiritual
suffering in patients in a persistent vegetative state, but the best
medical science available suggests that they do not experience
these dimensions of suffering. Locked-in and minimally conscious
patients may experience significant suffering—physical, psycho-
logical, social, and spiritual. Because suffering can be difficult
to assess in patients with severe brain injuries other than brain
death or the vegetative state, physicians should err on the side
of treating pain and other signs of distress. If Terri Schiavo was
actually in the minimally conscious state, as some have tried to
309
claim, the tragedy of her case was multiplied, as such patients
cannot reliably and consistently use words to tell us of their
suffering, nor are they likely to be able to attribute meaning to
their suffering. The ability to attribute meaning to suffering is an
essential component for coping with suffering!
There is no traditional moral obligation to provide non-
beneficial treatments based upon the classic goals of medicine,
which are, according to Hippocrates, “the complete removal of
the distress of the sick, the alleviation of the more violent dis-
eases, and the refusal to undertake to cure cases in which disease
has already won mastery, knowing that everything is not possible
to medicine” (15). There is a traditional duty to relieve suffer-
ing, nicely restated by Sir William Osler: “To cure sometimes, to
relieve often, to comfort always.”
Justice
Justice in the arena of medical ethics refers to distributive
justice and challenges each of us to ask, “What is a fair or just
distribution of scarce medical resources?” I share the pope’s fears
about turning human life into a commodity; that is a real concern
for practitioners and health care systems. Yet I believe we must
collectively face up to distributive justice concerns. Families may
bankrupt themselves caring for patients in a persistent vegetative
state, at which point Medicaid steps in. Medical costs are the
leading factor in bankruptcy. The same leaders of Congress who
intervened in the Schiavo case, such as Senator Frist and Con-
gressman DeLay, have also cut Medicaid spending dramatically.
Governor Jeb Bush presided over spending cuts that removed
105,000 Florida children from Medicaid. An ethic in favor of
life would need to consider these people as well.
Terri Schiavo was a hospice charity patient: her parents ob-
jected to her being supported by government funds. The hospice
caring for Terri Schiavo provided $9.5 million of charity care to
patients in the past year. Even those who provide charity care
need to consider where those dollars go. I believe there is a very
cogent argument in favor of supporting patients who can experi-
ence joy in life rather than those who are merely vegetating and
cannot experience any joy in life.
Another question of distributive justice relates to insurance.
Can a society that cannot find enough resources to insure the 44
million persons (25% of whom are children) with no government
or private health insurance really afford to maintain patients in a
persistent vegetative state at a cost of $40,000 to $100,000 each
per year? The lack of health insurance costs lives. According to
the Institute of Medicine, 18,000 deaths per year are directly at-
tributable to a lack of health insurance. Cancer mortality rates
are twice as high for uninsured persons as for insured persons ac-
cording to reports from the Kaiser Foundation. As you consider
your own answer to this question, remember that at any one time,
there are 10,000 to 100,000 patients in a persistent vegetative
state in the USA.
Conclusion
The Schiavo case has been a personal tragedy for Mrs. Schi-
avo, her husband, Mr. Schiavo, and her parents, Mr. and Mrs.
Schindler. It became a political farce when elected representa-
tives with little medical knowledge attempted to play both doctor
and judge. Decisions near the end of life, whether to maintain
310 BAYLOR UNIVERSITY MEDICAL CENTER PROCEEDINGS
a treatment that may not be beneficial or to withdraw or with-
hold a life-sustaining treatment, should be effectively handled
in the majority of cases by the primary treatment team. Ethics
consultations are available and can be particularly valuable in
cases of uncertainty or conflict. Palliative care consultations are
available in cases of uncertainty or when needed to help manage
complex symptoms, including physical, psychological, social, and
spiritual suffering. Such suffering is often at the root of many an
apparent conflict, and when the suffering is properly addressed,
the conflict resolves. When these efforts fail to resolve conflict
over decisions near the end of life, the rule of law suggests that
the conflict be resolved in a court and not in legislative delibera-
tions for a single patient.
At the end of all of the medical, legal, and ethical argument,
it is most important to remember that no matter how certain any
of us may be of our analysis, decisions near the end of life should
never be easy. We must remind ourselves that true wisdom comes
with the acknowledgment of uncertainty and admitting that we
cannot know all there is to know. This uncertainty is neither an
excuse to engage in endless moral relativism or to engage in intel-
lectual nihilism, refusing to search for the best possible solution
or the least terrible outcome for a troubling moral problem. As
individuals and as a society, we must do a better job of following
the wisdom of the sage Martin Buber, who teaches us that we show
the greatest respect for our patients, loved ones, and all humanity
by treating each person as our moral equal, embracing the I-Thou
relationship and avoiding the I-It relationship (16).
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2. Report of the Ad Hoc Committee of the Harvard Medical School to Exam-
ine the Definition of Brain Death. A definition of irreversible coma. JAMA
1968;205:337–340.
3. Plum F. Clinical standards and technological confirmatory tests in diagnosing
brain death. In Youngner SJ, Arnold RM, Schapiro R. The Definition of Death:
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1999:34–66.
4. Jennett B, Plum F. Persistent vegetative state after brain damage. Lancet
1972;i:734–737.
5. Multi-Society Task Force on PVS. Medical aspects of the persistent vegeta-
tive state (1). N Engl J Med 1994;330:1499–1508.
6. Multi-Society Task Force on PVS. Medical aspects of the persistent vegeta-
tive state (2). N Engl J Med 1994;330:1572–1579.
7. Bauby JD. The Diving Bell and the Butterfly: A Memoir of Life in Death. New
York: Vintage Books, 1998.
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ment of practice guidelines for assessment and management of the vegetative
and minimally conscious states. J Head Trauma Rehab 1997;12:79–89.
9. Pope John Paul II. Care for patients in a “permanent vegetative state.”
Origins 2004;33(43):737, 739–740. Also available at http://www.vatican.va/
holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_
20040320_congress-fiamc_en.html; accessed May 26, 2005.
10. Pope Pius XII. The prolongation of life (November 24, 1957). The Pope
Speaks 1958;4(4):395–396. Reprinted in Origins 2004;33(43).
11. O’Rourke K. Origins 2004;33(43):746.
12. Texas Conference of Catholic Bishops. On withdrawing artificial nutrition
and hydration (May 7, 1990). Origins 1990;20(4):53–55.
13. McCormick R. Origins 2004;33(43):747.
14. Fine RL, Mayo TW. Resolution of futility by due process: early experience with
the Texas Advance Directives Act. Ann Intern Med 2003;138:743–746.
15. Hippocrates. The science of medicine. In Hippocratic Writings. London:
Penguin Books, 1983:139–147.
16. Buber M. I and Thou. A New Translation, with a Prologue and Notes by Walter
Kaufmann. New York: Touchstone, 1970.
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