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"My mother's doctor is refusing to give her antibiotics," the caller told me in an urgent voice.
I asked why.
"He says that she's ninety-two and an infection will kill her sooner or later, so it might as well be this infection."
As disturbing as this call was, as outrageous the doctor's behavior, I wasn't particularly surprised. I have been receiving such desperate calls with increasing frequency for the last several years. Not every day. Not every week. But with sufficient regularity to know that something very frightening is happening to American medical ethics.
Among the more disturbing of such calls I have received was from John Campbell, whose teenage son, Christopher, had been unconscious for three weeks because of brain damage sustained in an auto accident. The boy had just been released from the hospital intensive care unit when he developed a 105-degree fever in the hospital's "stepdown unit." Campbell asked the nurses to cool his fever. They replied that first they needed a doctor's orders. Campbell asked them to obtain it, but Christopher's physician was out of town and the on-call doctor said no. "It was an evening of hell," Campbell says. "My son's life meant less than hospital protocol. When the doctor refused to order treatment, the nurses said that there was nothing they could do."
Campbell desperately tried to reach the on-call doctor himself, but the physician refused to take Campbell'sphonecalls or respond to his increasingly urgent messages. Meanwhile, Christopher's condition worsened steadily, his fever rising over a period of some twenty hours, to 107.6 degrees. Finally, the nurses—caught between a desperate father's pleas and a doctor's steadfast refusal to treat—insisted that the on-call doctor take Campbell's call.
Campbell demanded that his son's fever be treated immediately. The doctor refused. When Campbell grew more insistent, the doctor actually laughed. The boy was unconscious. His life was effectively over. What was the point?
"By this time," Campbell recalls, "my son's eyes were black as if he had been in a fight. He was utterly still. He was burning up. The back of his neck was so hot you couldn't keep your hand on it. I said to the doctor, `This is not a joke! This is my son. His life is at stake. His temperature is over 107 and you are going to do something about it.'" Hearing the angry determination in Campbell's voice and perhaps fearing legal consequences if Christopher died untreated, the doctor finally acquiesced.
Shortly after treatment commenced, Christopher's temperature subsided. Soon he was moved to a rehabilitation center for therapy and began a slow recovery. Today, he lives at home with his parents where he is learning to walk with assistance. When not in rehabilitation, Christopher works at a local youth center where he feeds animals and counsels at-risk teenagers. Christopher is very glad to be alive—and his parents and the many troubled people he helps every day are glad, too.
As I travel around the country speaking in front of various audiences about assisted suicide and other issues involving the ethics of modern medicine, I hear similar horror stories. People are deeply worried about what is happening to medicine: doctors pressured by HMOs to reduce levels of care; hospital nursing staffs cut to the bone; the sickest and most disabled abandoned to inadequate care; elderly people dying in agony in nursing homes because their doctors fail to prescribe proper pain control. There have even been reported instances of desperate patients in hospitals calling 911 because they were unable to get needed medical attention.
I believe that stories such as Christopher's are symptoms of a disintegrating value system in health care, which defines the sickest and most disabled among us as having lives not worth living, which views expensive medical treatments for such people as a waste of valuable resources, and which accepts their demise as a legitimate solution to the difficulties caused by their serious illnesses and disabilities. In short, the ethics of health care are devolving into a stark utilitarianism, which has begun to undermine the "do no harm" credo that has, for millennia, been the cornerstone of medicine.
Such attitudes certainly seem to have contributed to the death of Anthony Shatter, my friend Kathy's father. On one otherwise unexceptional Sunday, Anthony, a healthy seventy-six-year-old man, beloved by his family, active in the community and his church, fell on his driveway and hit his head. Seriously injured, he was rushed by ambulance to the emergency room, where he received excellent treatment and was then hospitalized for further care. For the next few days Anthony seemed to be getting better, but then his brain began bleeding and he was hurried into surgery.
Anthony emerged from surgery significantly debilitated. He needed a ventilator to breathe and required medically delivered food and fluids. He was in and out of consciousness, some days awake and aware, other days virtually unresponsive. Anthony was not terminally ill. He was not permanently unconscious. He was, however, significantly disabled and almost certainly would be for the rest of his life.
Anthony's prognosis was difficult for the Shatter family. But a dark time became excruciating because of the changes they noted in the attitudes of Anthony's medical caregivers. In the beginning, they had clearly valued Anthony's life and enthusiastically provided him with optimum care, but now they urged the family to accept his quick death as the solution to his medical condition and to their own continuing emotional struggle. Indeed, to ensure that Anthony would die, his doctors pressured the family into authorizing the withholding of his tube-supplied food and fluids.
The Shatters were appalled at the idea of dehydrating and starving someone they loved. After some back and forth, the hospital staff finally accepted the Shatters' decision. Six weeks after his accident, Anthony was transferred to a rehabilitation hospital where, the Shatters believed, he would receive treatment to help restore as much physical and mental function as his condition would allow. The day of the transfer, in fact, he spoke briefly with his family. All were hopeful. Perhaps he could soon be brought home.
Unfortunately, Anthony didn't get better. Moreover, at the new facility, the attitude of the personnel toward his life's value was, if anything, worse than at the original hospital. Then one Friday morning, Anthony developed a high fever and his blood pressure dropped. "We wanted Dad treated," Kathy says. "We demanded that a doctor examine him. Nobody showed up for hours. Dad was burning up and nothing whatsoever was being done. Finally, I spoke with an administrator and threatened to call the police if they did not take care of my father. He hemmed and hawed and reminded us that Dad wasn't making progress. I screamed at him, `I am calling the police and telling them you are murdering my father by refusing to help him! Get a doctor to my dad's bedside!' That finally got some action."
Anthony was taken to the hospital intensive care unit and was stabilized. But it was too late. He died early on Saturday morning.
The medical neglect of Kathy's father, the refusal of the elderly woman's doctor to treat her with antibiotics, the doctor's derision of a desperate father's request to reduce his son's fever are not isolated or even atypical anecdotes. They are storm signals warning of a quickly developing ethical crisis in a medical world that increasingly devalues some human lives and views people at the margins as expendable. Traditional morality and medical ethics are crumbling before our very eyes.
The New High Priests
We have not entered this dark new world by chance. We have been steered into it by an elite that has increasingly dominated public and professional discourse about medical ethics and the broader issues of health care policy for the last three decades.
Medical ethics deals with the behavior of doctors in their professional lives vis-à-vis their patients. Bioethics, as it has developed over the last few decades, focuses on the relationship between medicine, health, and society. This last element allows bioethics to espouse values "higher" than the well-being of the individual and to perform the philosophical equivalent of triage. Because of the almost imperialistic view of their mandate, many bioethicists presume a moral expertise of breathtaking ambition and hubris. Many view themselves, quite literally, as forgers of "the framework for moral judgment and decision making," those who will create "the moral principles" that determine how "we are to live and act," fashioning a "wisdom" they perceive as "specially appropriate to the medical sciences and medical arts." Indeed, some claim that "bioethics goes beyond the codes of ethics of the various professional practices concerned. It implies new thinking on changes in society, or even global equilibria" (my emphasis). Not bad for an intellectual pursuit that has only existed for about thirty years.
Bioethicists typically see their work as integrating "medical ethics and universal morality," going beyond "a few general principles" toward determining "the meaning of the good life." It is "both a discipline and a public discourse, about the uses of science and technology" and the "values about human life ... with a view toward the formation of public policy and a teachable curriculum." Put more simply, bioethics seeks to create a new morality of medicine that will define the meaning of health, determine when life loses its value, and forge the public policies that will promote a new medical and moral order. More than a set of tenuous speculations, bioethics in recent years has ossified into an ideology.
Undoubtedly, some bioethicists will angrily reject such a definition of their trade and calling. They act in good faith, they will contend. They are proponents of "quality of life" and only intend the creation of a better world. Besides, they will argue, bioethics is far from monolithic; the field contains widely divergent opinions about the issues and controversies they confront, ranging from assisted suicide, to cloning, to the definition of "health." Moreover, many would undoubtedly claim, bioethics doesn't have an end goal. It is more akin to a conversation among professional colleagues, a process that merely seeks rough consensus about the most pressing moral and medical questions that arise in a social world affected by an ongoing health care crisis. Indeed, most bioethicists would recoil at the notion that they are "true believers." Their self-image is that of the ultimate rational analyzers of moral problems and facilitators of ethical dialogue, who, were pipe smoking still fashionable, would sit back with pipe firmly in mouth and act as dispassionate mediators between advancing medical technology and the perceived need to impose reasonable limits on access to treatment as required by finite resources.
That may be their self-image, but it is also a dodge and a self-deception. Once bioethics moved away from ivory tower rumination and began actively influencing public policy and medical protocols, the field, by definition, became a goal-oriented "movement" attempting to affect political outcomes. Indeed, University of Southern California professor of law and medicine Alexander M. Capron notes that from its inception, "bioethical analysis has been linked to action." Even historian Albert R. Jonsen, a bioethicist himself, calls bioethics a "social movement." Has there been any social movement that was not predicated, at least to some degree, on ideology? Moreover, the bioethics pioneer Daniel Callahan, co-founder of the Hastings Center, a bioethics think tank, has admitted that "the final factor of great importance" in bioethics gaming societal respect was the "emergence ideologically of a form of bioethics that dovetailed nicely with the reigning political liberalism of the educated classes in America."
I asked the author, medical ethicist, and physician Leon R. Kass his opinion about my belief that bioethics has become an ideology. Kass told me, "With due allowances for exceptions, I think there is a lot to be said for that view. There are disagreements about this policy or that, but as to how you do bioethics, what counts as a relevant piece of evidence, what kinds of arguments are appropriate to make, there is a fair amount of homogeneity. If you don't hew to that view, you are considered an outsider."
The noted sociologist Renee C. Fox, a close observer of bioethics from its inception, told me in a similar vein, "I would call it an inadvertent orthodoxy. You could even call it ideology, depending on how you define the term." She added, "I do think bioethics has gotten institutionalized. It is being taught in every medical school in this country. The training people receive and the content of the curriculum of the short courses as well as the masters and doctoral programs can be quite formulaic. In that sense, I think you could talk properly about orthodoxy."
Sociologist Howard L. Kaye, author of The Social Meaning of Modern Biology, believes that this bioethics establishment sees its agenda "less as an attempt to arrive at an ethical regulation of biomedical developments" than as a program of "biology transforming ethics." Kaye observes that many bioethicists "believe fervently that there needs to be a radical transformation in how we live and how we think based on new biological knowledge because our values, our ethical principles, our self conception are based on outmoded religious ideas or philosophical ideas that they think have been discredited." If Kaye is correct—and there is abundant evidence that he is—the ultimate bioethics agenda is startlingly radical: dismantling traditional Western values and mores and forging a new ethical consensus based on values most people do not presently share.
This would be of little consequence if the bioethics movement were relegated to the cultural fringe. But bioethics advocacy is pervasive within the nation's most important institutions. In the last thirty years—financed by tens of millions of dollars in foundation grant money—bioethics ideology has spread throughout the depth and breadth of the educational, medical, legal, business, and governmental establishments to become one of the most influential cultural forces in the country. Members of the bioethics elite serve on influential federal and state government policy commissions, influencing the evolution of public policy and popular views. They write health policy legislation and they consult in medical controversies at the clinical level, often influencing life-and-death decisions. Both theoretical and clinical bioethicists testify as expert witnesses in cutting-edge lawsuits and submit "friend of the court" briefs in appellate cases of major significance. They appear on television and in the print media as "expert" commentators. They advise important politicians, all the way up to the president of the United States.
But the greatest influence of bioethics ideology is in education. Bioethics is taught to every medical school student, significantly influencing the attitudes of our doctors of tomorrow toward the health care system generally and their future patients specifically. Bioethics instruction is also provided to other university and postgraduate students destined to become lawyers, business executives, government policy makers, and educators. For those who wish to make a career in bioethics itself, there are more than thirty postgraduate programs in our leading universities, whence graduates go on to become consultants to nursing homes and HMOs, clinical bioethicists in hospitals and organ procurement centers, or fellows in the nation's medical and bioethical think tanks.
More immediately, the current generation of national, state, and local health care policy decision makers, clinicians, and professional leaders are being steeped in bioethics ideology in continuing education courses and symposia. Many universities around the country sponsor "short courses" in bioethics designed to train nurses, administrators, and other medical professionals who work at the clinical level how to make clinical decisions from a proper bioethical approach, thereby spreading the influence of bioethics to the bedside. For example, the University of Washington sponsors an annual five-day summer seminar designed to teach "physicians, nurses, social workers, chaplains, attorneys, teachers, and other professionals involved in the care of patients or the education of providers" the "concepts, methods, and literature" of the new medicine inspired by bioethics advocacy.
Bioethics is now an international movement. Bioethics advocacy exists in virtually every developed country. Moreover, the movement is continually seeking to expand its global influence. For example, the International Society of Bioethics urged recently that "the teaching of bioethics be incorporated into the educational system" of nations around the world.
The philosopher and theologian Richard John Neuhaus described this oozing of bioethics belief into every nook and cranny of the West's institutions most succinctly several years ago when he wrote, "Thousands of ethicists and bioethicists, as they are called, professionally guide the unthinkable on its passage through the debatable on its way to becoming the justifiable, until it is finally established as the unexceptional."
It is worth reflecting upon what has become unexceptional in our medical and moral lives. Twenty years ago, for instance, it would have been unthinkable to dehydrate people to death by removing their feeding tubes because they were cognitively disabled. It might even have been criminal. Today, due in large part to vigorous advocacy by bioethicists, which in turn has led to court cases and then to new laws permitting the practice, it is routine in nursing homes and hospitals throughout the country. Fifteen years ago, legalized assisted suicide was virtually unthinkable in the United States and Canada. Today, thanks in large part to advocacy by bioethicists, it is deemed justifiable, not only in Oregon where it is now sanctioned by law, but if public opinion polls are accurate, elsewhere in the country. It was once unthinkable to procure organs from someone in a coma. Today, some of the most mainstream bioethicists and physicians in the organ transplant community dispassionately debate the issue in bioethics and medical journals.
The new medicine, ethics, public policies, and philosophical beliefs that bioethics espouses are being forced upon a reluctant public. Dr. Leon Kass explains: "There is a kind of condescension toward the views of the general public [among bioethicists] and a considerable divide about core moral views. The American people, as a whole, are a religiously affiliated or God-believing people and it is on the basis of the wisdom of these traditions that they express their fears about the threats to sanctity of human life and to human dignity." On the other hand, mainstream bioethicists specifically reject these values. "At its founding bioethics involved a fair number of people who came at it from a religious perspective but the field has since been taken over by a secular form of doing ethics that is very little informed by any kind of metaphysical or transcendent view." Thus, bioethicists proclaim answers to our most pressing moral questions based on attitudes, sensibilities, and mores that are not shared by the very people who are supposed to benefit from their "moral expertise." Kass warns, "There is the very real danger that what constitutes a `meaningful life' among the intellectual elite [who make up the bioethics establishment] will be imposed on the people as the only standard by which the value of human life is measured."
John Keown, a University of Cambridge law professor and lecturer in the law and ethics of medicine, accurately identifies this fundamental conflict:
Traditional common morality, as its name suggests, comprises ethical principles common to civilized cultures. The notion that there are certain objective principles which societies must respect if they are to qualify as civilized, has been expressed in the West in the Hippocratic Oath, in Judeo-Christian morality, the prohibition against killing the innocent, and in the common law.... [But] much of modern bioethics is clearly subversive of this tradition of common morality. Rather than promoting respect for universal human values and rights, it systematically seeks to subvert them. In modern bioethics, nothing is, in itself, either valuable or inviolable, except utility.