Terri Schiavo died on March 31, 2005, after lasting 13 days without food or water. Her life and death had a profound impact on the American psyche and brought to the forefront the unresolved debate regarding how we treat severely disabled people and who should be their surrogate decision-makers. There is reason to be disturbed by the role that physicians play in molding public opinion regarding end of life issues, because their expertise is generally in medicine and not ethics.
This concern was reinforced by a particular email that arrived last week. I received a great deal of mail in response to my article arguing for the preservation Terri Schiavo's life. While most of the letters were supportive of my position, several were not. Since there is a great deal of ignorance in the world regarding end of life issues, and most people do not have the background to understand the intricacies of neurological impairment, I was not surprised by the negative comments. But I was particularly struck by a letter that I received from a neurologist, an expert on the brain -- the type of physician whose job it is to understand the fine shades of meaning that should shape the discussion of brain damage. He completely disagrees with my approach to the case and accuses me of not understanding Terri Schiavo's true condition. I have felt a visceral need to better explain why I think her death is such a turning point for American society. I can think of no better way to express my feeling than by responding to the neurologist's letter.
He wrote to me with what might appear to be a legitimate charge: that I (and by extension all others who argued for leaving in Terri Schiavo's feeding tube) am ignorant of what a persistent vegetative state means. The implication being that if one really understands such a condition, one could not possibly wish to preserve such a life. We must be intellectually honest enough to evaluate his critique and decide if it has merit. He states:
…I find myself in sharp disagreement with Dr. Eisenberg. The article refers to PVS as a "cognitively impaired" condition. In fact, there is no cognition whatsoever in someone who is in a persistent vegetative state. Modern aggressive emergency care developed over the last several decades, has allowed us to resuscitate patients with what would have been terminal hypoxic brain injury (what happened to Terri Schiavo). Unfortunately, the entire brain cortex becomes nonfunctional in these people and we are left with a functioning brainstem that allows for reflex eye movements, facial movements etc. PVS patients can even track a moving object in their field of vision because collicular function of the intact brainstem reflexively guides these eye movements. It is all too easy to imagine sentience in the PVS patient because, as humans, so much of our communication is nonverbal and cued by facial and eye movements.
His assessment of the persistent vegetative state is succinct and it is accurate. To the best of our medical understanding, we presume that a person in a persistent vegetative state has no cognition whatsoever. I never gave much credence to those who argued about the rehabilitation potential of Terri Schiavo. Not because I did not believe it to be true (I have no way of knowing), but because it really does not make a difference to outsiders like myself. CT scan results, Glascow Coma Scales, and following balloons are really only of interest to neurologists and family members who need to arrange for the best possible care for the patient.
As a society, what we must concern ourselves with are two questions: What is the significance of being so terribly impaired that there is no cognition and how should such people be treated? It is here that the doctor falls woefully short in his analysis. While I am sure that his credentials are impeccable and his understanding of neurology is excellent, he completely misunderstands the role that physicians should play in society's evaluation of end of life issues (as we will discuss) and he clearly does not appreciate where medical knowledge ends and morality begins.
His letter continued:
Nevertheless, the activity of our cerebral cortex is what distinguishes our very "humanness". If the cortex is dead, then the human individual is dead. . . If the cortex is destroyed, personhood ceases. PVS is an abomination of life --in essence a human shaped colony of cells with no sentience -- a glorified cell culture. . .Thankfully, I have not seen this irrational preservation of "life" at all costs in this situation since my training in the early 1970's. . . Patients with PVS and end-stage Alzheimer's disease routinely have IV's and feeding tubes removed in the United States every day.
The opinions expressed above are very widespread in the medical community today. Variations of these views are espoused by many of the physicians with whom I have discussed this topic. For this reason, they cannot be lightly brushed aside. Please understand that the issue is not autonomy (which is an independent and important issue), but the definition of life. Is the cerebral cortex what makes us human and is it true that "if the cortex is dead, then the human individual is dead"?
Of course not. My physician critic clearly has stepped beyond the bounds of medicine into the realm of philosophy, and that is the problem. As any physician knows, there is neither a state in America nor any sane physician in the world who would declare that someone who is in a persistent vegetative state is dead. If PVS really equals death then why bother pulling the feeding tube? Just bury the patient with the feeding tube still in place! The doctor's comments are clearly hyperbole, and represent a very insidious type of bias that leads people to equate PVS with death.
Terri Schiavo did not die of PVS; she died of starvation and dehydration.
Why do people do it? Because it allows them to feel comfortable that they are not murdering someone if the person that they "kill" is already dead. Terry Schiavo was not dead until two weeks after her feeding tube was removed. She did not die of PVS; she died of starvation and dehydration.
As hard as it may be for physicians to accept, the definition of death is not a medical one; it is a philosophical and societal one. While physicians certainly may participate in the debate, the value of their opinions should be weighed based on merit, not medical training. There are no medical criteria that can answer the fundamental question of what is life and what is death. Once society decides how it wants to determine death, then the physician is called upon to use his or her expert knowledge to confirm that the criteria have been met. While physicians may use their expertise to offer information to society's decision-makers so that the definition of death is grounded in accurate information, they have no more proficiency in the areas of ethics or philosophy than anyone else.
So our doctor's description of the impairments of the PVS patient are of course accurate -- no cognition whatsoever. However, what he fails to appreciate is that his medical credentials do not give him the right to make the leap from the clinical description of PVS to the statement "if the cortex is destroyed, personhood ceases. PVS is an abomination of life -- in essence a human shaped colony of cells with no sentience -- a glorified cell culture." What credentials were bestowed upon him that give him the right to decide which lives are worth preserving? The answer is that with a medical degree often comes hubris.
We have unfortunately seen such hubris result in terrible loss of life over the past century. The belief that medicine can determine which lives are worth preserving was an intrinsic part of the pre-Nazi German medical establishment (see "Why Medical Ethics"). In the late 1920's and early 1930's:
a number of prominent German academics and medical professionals were espousing the theory of "unworthy life," a theory which advanced the notion that some lives were simply not worthy of living. . . If Mengele himself (an infamous physician who performed murderous experiments on live concentration camp inmates) became a cold-blooded monster at the height of his Nazi career, he certainly learned at the feet of some of Germany's most diabolical minds. As a student Mengele attended the lectures of Dr. Ernst Rudin, who posited not only that there were some lives not worth living, but that doctors had a responsibility to destroy such life and remove it from the general population. His prominent views gained the attention of Hitler himself, and Rudin was drafted to assist in composing the Law for the Protection of Heredity Health, which passed in 1933, the same year that the Nazis took complete control of the German government. This unapologetic Social Darwinist contributed to the Nazi decree that called for the sterilization of those demonstrating the following flaws, lest they reproduce and further contaminate the German gene pool: feeblemindedness; schizophrenia; manic depression; epilepsy; hereditary blindness; deafness; physical deformities; Huntington's disease; and alcoholism1.
The scary part of the Terri Schiavo debate has been the blurring of the line between life and death, and between medical data and morality. Why does the medical knowledge of the physician seem to translate into skill in evaluating the value of life?
We are a society easily open to suggestion. Our opinions are strongly influenced by the media. And as Dr. Milgram proved with his obedience experiments, our moral judgments are most easily swayed by authority figures. So when doctors espouse a belief that some patients are "as good as dead," who are laypeople to disagree? We see the murderous outcome when our natural tendency to trust authority figures is exploited in the area of evaluating value of life. If the doctors tell us that some lives are not worth preserving, we may feel that we lack the knowledge to disagree. This drives home the crucial need to carefully assess who our authority figures are and whether they are functioning within the area of their expertise.
In an excellent article examining the role of nurses in the eugenics programs of Nazi Germany, Susan Benedict, a professor at the College of Nursing of the Medical University of South Carolina in Charleston, writes:2
During the Nazi era, so-called "euthanasia programs" were established for handicapped and mentally ill children and adults. Organized killings of an estimated 70,000 German citizens took place at killing centers and in psychiatric institutions...The German people were exposed to the idea of euthanasia through posters, movies, and books supporting the destruction of "lives not worth living". A 1936 book entitled Sendung und Gewissen (Mission and Conscience) was published in Germany by an ophthalmologist and was widely read. This novel told the story of a young wife with multiple sclerosis who was euthanized by her physician-husband. This novel was important in preparing the ground for the euthanasia programs3 It was made into a movie "Ich Klage an!" ("I Accuse") and was widely shown during these years. Two other popular movies of the time also dealt with euthanasia, Life Unworth Life (1934-1935) and Presence without Life (1940-1941)4 . "Opfer der Vergangenheit (Victims of the Past, 1937) was produced under Hitler's direct order and shown by law in all 5,300 German theaters."5 These films argued that keeping seriously ill people alive was against the basic principles of nature.The results of the active participation of the medical community in the determination of which lives were worth preserving were devastating. "By the time the Third Reich lay in ruins, German doctors had sterilized at least 460,000 men and women diagnosed as unfit or disturbed… dispatched 250,000 to 300,000 chronically ill patients by means of starvation, gas inhalation, prolonged sedation and toxic injections; gassed and cremated more than 10,000 infants and children with disorders ranging from congenital heart disease to epilepsy."6 And so, with help of the medical establishment, the most civilized and scientifically advanced country in the world, destroyed its own people, because their lives were simply "not worth living."
Did these doctors and nurses appreciate how far they had strayed from their duty to care for the sick? Evidence from the Nuremberg trials seems to point to the inescapable conclusion that many of the perpetrators never appreciated the ethical disconnect between their actions and their medical mission. Their medical personas were subsumed into their political and philosophical views. It is only because they were doctors and nurses that they had the opportunity to cause such great harm. They became leaders in Nazi Germany7 and used their medical knowledge to further their personal utilitarian agendas.
The outcome of the case has called into question the lives of all disabled people.
I make no apology regarding my stance on the Terri Schiavo case. In the guise of misplaced compassion, using our legal system's "due process" as legal sanction, the American courts legalized the killing of those people whose lives are not worth living. Many Americans have accepted the information that they have seen in the media with little question. While the courts probably acted appropriately within the scope of their jurisdiction, the people of this compassionate nation should do some deep soul searching and ask themselves whether they have been sold a "bill of goods" and misled by those it trusts most -- its doctors and courts. Are we so sure that life without consciousness is not life?
The real significance of the Terri Schiavo case is not that one woman was killed. The outcome of the case has called into question the lives of all disabled people. Can the supporters of removing Terri Schiavo's feeding tube honestly answer why we should not euthanize a profoundly retarded child who will never have any real self awareness? Should depressed people with refractory deep depression be given lethal doses of painkillers for their own good? Who will be the arbiter of such decisions?
I worry that our society is descending once again into the abyss of a particularly pernicious form of ethical relativism which attributes value only to certain lives based on whatever set of standards are currently in vogue. As the value placed on life declines, but the cost of medical care increases, even greater pressure will be placed on the disabled (who "cost" too much to maintain) to do us all a favor and die. I sincerely hope that there is a remaining bastion of common sense and morality among the millions of Americans who have a basic faith in the value of life. They do not need medical degrees to understand that life is intrinsically valuable. They understand that life does not derive its value from the ability to derive enjoyment from the world. (see: Should Terri Schiavo Live or Die?)
The neurologist ended his letter in the following way:
Western neurologic practice, opinion and ethics recognize these conditions (PVS and Alzheimer's disease) as terminal in contradistinction to "Halachic law". It would seem that medical ethics at least in the U.S., has become more informed or evolved beyond an archaic Halachic law. Dr. Eisenberg states in his essay , "The key to analyzing any situation is to realize that good ethics start with good facts." On this, I wholeheartedly concur and as a bedside clinician who deals with these cases, would offer this as a prescription to Dr. Eisenberg.
Given a choice between the enlightened ethics of my correspondent and the "archaic" ethics of Jewish law, I really see no choice. He is not the first educated person to announce to the world that traditional ethics are passe. But throughout history, the cheapening of life has inevitably led to the deaths of innocent people. Whether it is a communist nation that devalues the intellectuals or ethnic groups that cheapen the lives of their rivals, in every instance the beginning of the end is the concerted attempt to convince the population that some lives just don't matter.
On the one hand I can take the Jewish approach, one that has consistently viewed every person as having a spark of God within them, regardless of their abilities (or complete lack of cognition), merely because God created them. On the other hand, I can take an approach that values a human life by its utility. Based on past experience, I would be making a very poor investment in the future of civilization to choose the latter. An ethic that values life will always be a better investment for society than one that demeans the lives of others.
2 Benedict, Susan, and Jochen Kuhla, "Nurses' Participation in the Nazi Euthanasia Programs," Western Journal of Nursing Research, April 1999, 21(2), 246-263. Can be viewed at http://www.baycrest.org/Winter%202002/article4.htm
3 Proctor, R. (1988). The destruction of "lives not worth living". In Racial Hygiene: Medicine Under the Nazis. Cambridge, MA: Harvard University Press, p. 183
4Amir, A. (1977). Euthanasia in Nazi Germany. Dissertation, State University of New York at Albany. University Microfilms International,p. 97.
5 Michalczyk, J. (1994). Euthanasia in Nazi propaganda films: Selling murder. In Medicine, Ethics, and the Third Reich: Historical and Contemporary Issues. Kansas City: Sheed and Ward, p. 65
6 Dr. Michael Thaler, "The Art and Science of Killing Children and Other Undesirable Beings," California Pediatrician, Fall 1992:
7 See the case of the Pernkopf atlas. Dr. Pernkopf, who was made head of the University of Vienna by the Nzais, created the best anatomic atlas ever produced, utilizing the bodies of political prisoners and concentration camp victims for his illustrations. He was an outspoken supporter of the Nazi eugenics theories and felt that it was his medical duty to further their agenda. See the discussion by the Kennedy Institute for Ethics at http://www3.georgetown.edu/research/nrcbl/hsbioethics/units/cases/unit3_2.html and the British Medical Journal (BMJ 1996;313:1422 -7 December) at http://bmj.bmjjournals.com/cgi/content/full/313/7070/1422 .