From Quinlan to Schiavo: medical, ethical, and legal issues in severe brain injury
1Robert L. Fine
1From the Office of Clinical Ethics, Baylor Health Care System, and Department of Internal Medicine, Baylor University Medical Center, Dallas, Texas.
Corresponding author.The battle over the life and death of Terri Schiavo was only the most recent medical ethics case to catch the public's attention. This case asked both the individuals involved and our society in general to make moral judgments about the appropriateness of a decision to maintain or withdraw life-sustaining treatment. As a practicing medical ethicist and an observer of the case, I was startled by the degree of misunderstanding about different types of brain injury and by more than a few misstatements about 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 exclusive conditions. This failure of the media, politicians, and even some physicians who should know better to accurately describe Mrs. Schiavo's medical condition was particularly disturbing, because good medical ethics begins not with the discipline of ethics but with good clinical medicine. Appropriate moral judgments about medical treatment decisions cannot be made without first understanding the relevant clinical medicine. In this article, I review the differences between coma, brain death, the vegetative state, and other profound brain injuries. I then review the Quinlan, Cruzan, and Schiavo cases to explore various legal aspects and close with reflections on some of the ethical issues related to treatment of patients with profound brain injuries.
TYPES OF BRAIN INJURY
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 Table11. When reviewing this table, it is worth noting that unconscious patients cannot suffer; suffering is an emotive event that requires consciousness. This will become important in the moral analysis that follows the medical and legal review.
Table 1
Anatomic injury and functional status in different types of brain injury
| Anatomic status | Functional status | ||||||
| Condition | Upper brain | Brain stem | Sleep/ Wake cycle | Eyes | Body movement | Gag/ breathing | Ability to suffer |
| Brain death | − | − | − | Closed | − | − | No |
| Coma | − | ± | − | Closed | − | ± (usually −) | No |
| Vegetative state | − | + | + | Open/ roaming | Reflex | + | No |
| Minimally conscious state | ± | + | + | Open/ tracking | None to purposeful | + | Yes |
| Focal brain injury and dementia | ± | + | + | Closed and open/tracking | Variable purposeful | + | Yes |
Coma
Most serious brain injuries begin with a coma, which is best thought of as an “eyes-closed unconsciousness.” It is as if the patient is sleeping but cannot be roused. Coma is usually not permanent. Some patients go on to become brain dead; others enter the vegetative stage, become “locked in,” or enter the minimally conscious state; still others recover completely. Patients who recover may be normal or may have a functional deficit such as paralysis, weakness, or cognitive impairment.
Brain death
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 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 irreversible. 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, preexisting pupillary abnormalities, chronic carbon dioxide retention, and hypothermia.
Texas law does not mandate any particular test for the diagnosis of brain death. A number of tests are available, including bedside testing and apnea testing (Table (Table22). Apnea testing is useful because other technological tests lack both its 100% sensitivity and 100% specificity (3).
Table 2
Bedside and apnea testing for brain death
| Bedside testing | Apnea testing |
| • Absent grimace or withdrawal response to pain | •Pretest criteria: euvolemia, temperature ≥36.5°C, systolic blood pressure ≥90 mm Hg, PCO2 ≥40 mm Hg |
| •Pupils unresponsive to light | |
| •Absent corneal reflex | •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 |
| •Absent gag reflex | |
| •Absent cough reflex to suctioning | |
| • Absent oculocephalic response: the eyes turn with the head; no eye movement | • Test arterial blood gases at 8 to 10 minutes |
| • Test is positive if no respiratory movement is present and PCO2 ≥60 mm Hg | |
| • Absent vestibulo-ocular (caloric) response: the eyes fail to deviate away from the side irrigated with ice water; no eye movement | • Test is inconclusive if PCO2<60 mm Hg, systolic blood pressure <90 mm Hg, oxygen saturation <80%, or cardiac arrhythmia is present |
PCO2 indicates partial pressure of carbon dioxide; PO2, partial pressure of oxygen.
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 community 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 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 obligation 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 technology, was first described in 1972 (4). The vegetative state is best understood as an “eyes-opened unconsciousness”; there is a disassociation 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 patients (5, 6).
As with the diagnosis of brain death, the diagnosis of a vegetative state is a clinical judgment based on several criteria (Table (Table33). 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 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 movement; 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.
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.
The prognosis for recovery is a key concept and is an essential feature of the moral analysis dealing with patients in a vegetative 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 vegetative patients (Table (Table44). 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.
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.
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 determining 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 extraordinary insurance, the patient often winds up in a Medicaid nursing home where the quality of care can be marginal, with 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 neonatologists 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 commonly 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 inconsistent 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.
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 Quinlan, Nancy Cruzan, and Theresa Schiavo. In the first case, that of Karen Quinlan who became vegetative in 1975, legal arguments continued for about 1 year. In the second, that of Nancy Cruzan who became vegetative in 1983, legal arguments went on for about 3 years. In the third case, that 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 cardiopulmonary 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 Supreme 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 cognition 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 committee,” which was a concept that evolved into what we today 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 reasonable 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 (Figure11). The electrocardiogram 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 refuse 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 disagreement 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. Although 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 cardiac 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 psychologically 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, Michael Schiavo took his wife to California for experimental therapy, including placement of a thalamic stimulator implant. From November 1990 to April 1994, Terri also received physical, occupational, 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 vegetative 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 convincing 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 Maxfield 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 probability” 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. Petersburg 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 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 University of Florida and former chief of the Department of Neurology 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 (Figure22). 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.
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 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 carried 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 concerning 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 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 addition, 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 allocution 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 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 vegetative 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 prognosis 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 proportionate, 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 important 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 pronouncement about medical treatment. ANH definitely provides nourishment, but it is not nourishment that alleviates suffering because vegetative patients don't suffer. Such patients lack function 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 intention 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 cannot 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 societal 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 withdrawn 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 le coma depasse was described. He said: “Life, health, all temporal activities are in fact subordinated to spiritual ends” (10), suggesting 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 appropriateness of ANH in 1990:
The morally appropriate foregoing or withholding of artificial nutrition 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 irreversible 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 approve 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 condition, 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 qualitative 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 necessarily 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 interventions—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 analysis 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 surrogates 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 violated 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 (avoiding 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, psychological, 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 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 diseases, 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 suffering, 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 Congressman 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 objected 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 experience 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 attributable to a lack of health insurance. Cancer mortality rates are twice as high for uninsured persons as for insured persons according 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. Schiavo, her husband, Mr. Schiavo, and her parents, Mr. and Mrs. Schindler. It became a political farce when elected representatives with little medical knowledge attempted to play both doctor and judge. Decisions near the end of life, whether to maintain a treatment that may not be beneficial or to withdraw or withhold 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 deliberations 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 intellectual 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).
References
Articles from Proceedings (Baylor University. Medical Center) are provided here courtesy of Baylor University Medical Center
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