Ethics And The Health Professions

Relating The Memory Of The Shoah To The New Managed Care Millennium

Harold J. Bursztajn, M.D.

Harold J. Bursztajn, M.D. is an Associate Clinical Professor of Psychiatry and Co-Director of the Program in Psychiatry and the Law at Harvard Medical School. This text is a draft of remarks prepared for the conference “Jewish Medical Resistance During the Holocaust,” held by the YIVO Institute for Jewish Research and the New School for Social Research in New York City, November 3, 1996. The author is grateful to Archie Brodsky, Barry M. Shmookler, M. D., Ann-Louise Silver, M.D., and Leanti H. Thompson, M.D., for thoughtful comments and warm encouragement on initial versions of the essay.

Introduction

With the new millennium fast approaching, the world looks forward to a symbolic fresh start. Yet every symbolic gain involves a loss of reality. One loss for the third-millennium civilization is the potential destruction of what can be remembered and learned from the horrors of the second millennium. This includes remembering the perversion of Christianity into a vehicle for anti-Semitism, such as occurred during the second millennium's Crusades, Inquisition, and Shoah. Of these, the most recent, the mid-twentieth-century systematic murder of Jews known as the Holocaust or Shoah, is perhaps also the one which will be the most difficult to remember and learn from. Already much is a distant memory. There even exist Holocaust deniers who have moved from the unintentional distancing to the actual destruction of memory through disputing the reality of the Nazi genocide of European Jewry.

Surprisingly, while programs such as the Brookline, Massachusetts Facing History and Ourselves have been designed for educating junior high school students about the moral meaning of the Shoah, I know of little work applicable to educating professionals about ethical choices and standards of conduct that draws on the memory of those professionals who lived through the Shoah. What little work has been published about the daily conduct and ethical choices confronting professionals, such as physicians, during the Holocaust has been marginalized to relative obscurity. Such work has taken the form of accounts published by Holocaust survivors themselves (often at their own expense) or of video exhibits at the United States Holocaust Memorial Museum in Washington, D.C. [1,2,3,4] When the conduct of professionals has been systematically examined, the moral focus has been on the ethical misconduct of the perpetrators. [5] Thus, in a bitter irony, the often self-serving "I only followed orders" memories of the atrocities committed by the Nazi doctors are more readily available to physicians and the educated lay public than is the inspiration provided by the memories of ethical choices of the physicians who worked responsibly with the Jewish Resistance. The behavior of the nazi physicians was partially addressed at Nuremberg. Today it is remembered as a model of how physicians should not behave (Ref. JAMA). The behavior of physicians of the Resistance deserves to be remembered both in its own right as well as what it can teach physicians about how to behave responsibly. The memories of the physicians who aided the victims of the Nazis and joined the Jewish Resistance in Nazi-occupied Europe can be relevant today beyond being "just history." They can also serve as a ready source of inspiration for cultivating the ethics of professional responsibility among physicians today who grapple with ethical choices in an era of economic and technological complexity. In particular, they can help physicians cope with the moral dilemmas created by the increasing prevalence of third-party (e.g., managed health care) involvement in the hitherto relatively autonomous doctor-patient relationship.

My Parents' Experiences with Doctors

Both of my parents survived the Shoah while participating in activities of the largely forgotten Lodz Ghetto Resistance in Poland. As an example of what can be learned by medical professionals today, I will briefly recount my father's experiences with doctors in the Shoah, (1939-1945), [6] and, by contrast, my mother's experiences with doctors in 1990.

My father’s first experience with doctors during the Shoah was in a Nazi prison hospital recovering from Gestapo torture, to which he was subjected in an unsuccessful attempt to have him reveal the whereabouts of his family and their substantial assets. He remembers that all he wanted was for the pain to stop and to protect his family. The only solution to what seemed like an otherwise hopeless situation was to die. Fortunately, the Jewish physician who was ordered by the Gestapo to come on the scene did not rush to offer him the means to end his life. He took the time to speak freely about his dual role, indicating that the Gestapo's purpose in having my father's wounds administered to was to keep him alive in the hope that further torture would yield the information that the interrogators were after. But he also addressed my father's pain and survivor guilt by saying: "I will not survive this war, but you, who are young, as long as you don't give up hope, will.” My father lived to resist his interrogators, survived a scheduled execution, and eventually made his way out of prison to reenter the Lodz ghetto with a mission: save as many as might be saved from the inevitable Nazi attempt to exterminate its Jewish inhabitants.

A few years later, while serving the Resistance, my father was wounded when, as he was returning from a night raid on a nearby Nazi warehouse, he was shot at by a perimeter patrol. Escaping his pursuers, that night he was aided by a Jewish physician otherwise employed by the Ghetto authorities. That physician was acting well beyond the scope of his responsibility as a Judenrat, Jewish Council, physician. But, at the risk of his own death, he first made the one tool he needed, a newly sterilized coat hanger with which to fish out the bullet lodged in my father's leg, and then closed the wound. It was a wound which, had it been left open, would have betrayed my father the following morning to the outraged Nazis and to his own employers, the intimidated Jewish authorities. In each of the above encounters, the physician was an agent both of his employer and of the patient -- in effect, a double agent. However, in each instance, the physician resolved a potential conflict between doctor and patient by accepting responsibility for the care of his patient rather than by saying, "I am not authorized to care for this patient." Conflict resolution in such instances occurred not in an administrative or judicial forum, but within the souls of the doctors of the Shoah and their comrades.

Unfortunately, in today's managed health care environment, a conflict between duty to a patient and to a third party is all too often resolved in favor of the third party. It is hard to understand why third-party threats to a physician's economic survival seem more potent, or why physicians seem more easily intimidated today, than they were during the Shoah when literal survival was at issue. Is it that moral choices were more stark and vivid during the Shoah than today? What is clear is that the Shoah physicians did not adopt the flight from individual moral responsibility characteristic of those physicians today who, in a current version of "I was only following orders," insist that "I wasn't authorized to treat" or I referred, so it is not my decision."

My mother's experience in 1990 while struggling with a malignant melanoma comes here to mind. A woman of extraordinary bravery, in 1943 she had faced, with characteristic resolve, her approaching death at the hands of a drunken Nazi officer who had selected her from a lineup for execution. In 1990 her will to resist took the form of an active interest in learning about the variety of available National Institutes of Health (NIH)-approved clinical trials for experimental treatments of her type of cancer. Her primary care clinician kept silent since it wasn't his responsibility to advocate for my mother with his colleague in research.

Eventually, she asked her oncologist whether he had heard of a protocol which she considered worth exploring. The answer was yes, he had. In fact, one of his colleagues was in charge of this protocol at the hospital where his own practice was based. However, since my mother was sixty-nine, and the cutoff age for entry into the protocol was sixty-seven, he was convinced that his colleague would refuse to offer her the treatment even on an out-of-protocol basis. Indeed, his colleague refused my mother's request, without regard to how important it was for her to not give up, and without due consideration of her deep wish to approach death with resistance rather than acceptance.

When medical practice is informed by the perspective of clinical ethics, the physician is concerned to see that the patient’s choices are not only autonomous (i.e., made freely, without undue influence), but also authentic (i.e., expressing the patient’s underlying values, goals, and identity). [6] In my mother’s case, both the autonomous and the authentic character of her wishes should have been evident in light of her past experience, yet these factors were not considered. Rather, considerations related to institutional process took precedence. The physician's own desire to avoid conflict with the institutional third parties, i.e., his own hospital, the managed health care insurance and the National Institutes of Health, was rationalized by irrelevant or vague references to the twin fictions of “medical necessity” and “medical futility.” These concepts, while having a limited heuristic value from a policy perspective, become delusions when applied blindly to justify ignoring an individual patient's autonomous and authentic wishes.

In the ghettos of conquered Europe, maintaining public health required a coordinated battle against hunger and infection. The living conditions to which the Nazis consigned the Jews -- extreme crowding together with deprivation of food, sunlight, soap and water, clean clothing, bedding, fuel, and medication -- were breeding grounds of deadly disease. To prevent the typhus epidemics that would give the Nazis a pretext for the liquidation of a hospital or the extermination of a ghetto, Jewish medical resisters and their exceptional gentile medical allies educated the population in the principles of good hygiene. They distributed food and medical supplies to those most in need, set up bathing facilities and garbage collections, and provided haircuts, vaccinations, and pediatric services. By keeping the ghettos functioning as long as possible, these tactics delayed deportations to the camps, thereby ensuring ultimate survival for many who would otherwise have perished. Today’s health care environment, remote as it is from the extremity of the Shoah, still calls for a spirit of resourceful cooperation.

Ethics and the Professions in the Third Millennium

In an era of third-party involvement in relationships between doctors and patients, the need to create a place for learning from the experiences of patients and physicians during the Holocaust has an added urgency. It is an urgency which goes beyond the approaching deaths of the aged survivors and witnesses, and the fading of memories sure to be accelerated by the fast approaching new millennium milestone for remembrance. Continued professional responsibility is a hallmark of professional ethics. As a demonstration that professionals can uphold these principles even in the most grim circumstances, the legacy of the Shoah is a precious resource. It is a legacy which the medical profession, now recreating itself with the advent of managed health care, cannot afford to lose if it is to maintain the relative autonomy of the doctor-patient relationship into the third millennium.

The difficulty of the task ahead was made clear to me when I was seeking to post an announcement of the conference on “Jewish Medical Resistance During the Holocaust” on the various professional Internet newsgroups to which I subscribe. While the announcement was welcomed by the psychoanalytic community in which I am most at home, the responses varied widely across other medical groups. The moderator of one newsgroup pointed to a fundamental problem: clinical ethics in general, and the Shoah in particular, are considered literally “noise” rather than “signal” by many physicians. The moderator kindly added that, while he considered such an announcement “noise,” he would be glad to help locate a smaller newsgroup of physicians where such “noise” might be more easily tolerated.

There is little in the formal requirements of graduate medical education which encourages physicians to learn about medical ethics. Unlike the field of law, there is not even a medical ethics component in the certifying examination of any medical specialty board other than such minor exceptions as a few scattered "ethics questions regarding death penalty assistance" on the forensic psychiatry subspecialty boards. It is thus no surprise that the relevance of clinical ethics to medical decision making is at best marginally tolerated, and at worst dismissed as noxious noise when it is framed in what can be learned from the Shoah.

A most relevant question for creating a Shoah-related, managed health care relevant ethics core curriculum is: What do physicians do today when experiencing conflict between their duty to patients and third-party obligation? The simple, self-righteous answer, to put the patients’ interests first, is in practice obscured by the lack of perception that such conflict exists in the first place. This moral blindness is often rationalized with such prima facie quasi-philosophical or ethical constructs as "medical necessity" and "medical futility."

Increasingly, this reductive stripping away of the human context of clinical decision making is being carried out in the name of ethics itself. Various mechanisms have been devised to give patients greater freedom of choice and to spare them the violations and indignities of unwanted treatment. These mechanisms include living wills, advance directives, [7] “Do Not Resuscitate” orders, and the Patient Self-Determination Act. [8] Tragically, when these ostensible safeguards are implemented under pressure to make a premature decision without the support of an ongoing therapeutic alliance, they may merely serve to ratify a specious autonomy on the part of a patient too frightened and depressed to consider his or her authentic wishes and long-term best interests. Seemingly autonomous decision making is all too easily influenced by the pain, fear, and disorientation that accompany illness. [8] Under such conditions, decision-making becomes vulnerable to an institutional atmosphere that conveys both consciously and unconsciously, verbally and nonverbally, the distorted priorities of third-party insurers and managed health care. Thus, the despairing refusal of care by the patient isolated from life-affirming support, but not from defeatist pressure, is used to rationalize denial of care and hope, rather than as an ethical imperative to make contact with the patient.

While the avoidance of omnipotence, false hope and of any glib denial of natural cause and history are important in patient care, so is the avoidance of a reflex flight from responsibility and false and unnecessary despair. After all, my father might well have slipped into a fatal despair, had a caring physician not reawakened his will to live. Compare my living with that memory to the recent tragedy experienced by a friend of mine whose father died after his advance directive was misinterpreted and life support was withdrawn without a thorough workup to rule out reversible causes of his coma. Primum non nocere, the "first of all do no harm" principle, was forgotten in the name of a specious beneficence to the family: "If we keep him on the respirator, Medicaid won't pay for it, and you will go broke." What memory work lies ahead for my friend and his family in the wake of this moral amnesia on the part of medical professionals? Yes, the recognition that physicians today are vulnerable to a flight from responsibility by scapegoating medical or managed health care is a first step towards ethical decision making. When I read the surviving memoirs of the physicians of the Resistance, I am struck by how ready they were to take and maintain responsibility in the face of conflict and how careful they were to avoid self-righteousness in the form of a "my hands are clean" attitude.

While managed health care systems are not Nazi-like by any stretch of the imagination, they do reflect interests which are at times in conflict with those of their subscribers, our patients. Taking responsibility by acknowledging such conflict, as well as that there can be conflict between us and our patients, is also a crucial step toward creating a meaningful dialogue among health care professionals, patients, and our patients’ third parties. This principle is violated, for example, by the so-called “gag clauses” in contracts between managed health care companies and physicians, such as one rule which some physicians have interpreted as preventing them from communicating with their patients about the possibility of urgent hospital care or about experimental treatments such as the one my mother was denied. However, physicians and patients can join to advocate for elimination of such clauses. Some managed health care companies, such as Humana Inc., have already taken the initiative to eliminate them. Even where such clauses exist, one of the Shoah's lessons is that it is the ethical duty of physicians to speak freely to their patients regarding their care.

Another potential impediment to physicians taking responsibility occurs when systems such as capitation, involving fixed reimbursement per groups of patients, place primary care physicians in the role of "gatekeeper." Such dual agency, that of being both "gatekeeper" and primary care physician, is ethical only if both patient and physician are aware of the potential for conflict. Capitation does not need to mean substandard care if the ethical perspective is reflected in professionals' sense of ongoing responsibility. Once the gate is opened and a patient is referred, the physician-gatekeeper's alliance with the patient does not and should not end. The responsibility for making an appropriate referral and having adequate follow-up should not simply be passed along with a "not my problem" attitude. Patient care is the joint responsibility of each member of the referral chain or team, even as each must also exercise independent judgment.

Today, without the shadow of a clearly threatening common foe to ally doctor and patient, alternatives to current pathways of adversarial dispute resolution need to be created. The lack of independent appeals processes and reliance on administrative judgments based on chart review rather than patient examination often amplify the adversarial tone of health care delivery. One such adversarial tone is expressed in terms such as "medically unnecessary." Clinically based alternative dispute resolution can be adopted to meet the challenges of three-party medicine without a rush to blame, scapegoating a flight from responsibility, or patient abandonment. [9] If an ethical tone could be maintained under the conditions of profound horror and adversity of the Shoah, than surely a mutually responsible dialogue can be created even as today's conflicts are acknowledged. Among the lessons professionals can learn from the Shoah is that by accepting joint responsibility rather than simply blaming third parties in an evasion of individual responsibility, ethical choices can be made even under the most tragic of circumstances.

Medical education can help integrate clinical ethics into medical practice by including it as part of both National Boards and the American Board of Medical Specialties examinations. Clinical competence in the resolution of moral dilemma, can be as easily diagnosed by tests as other examined competencies. For knowledge to be immediately available in the midst of real-time decision making, it has to be available by being deeply meaningful, vivid, and personal. [10] As I have learned from my undergraduate, graduate, and post-graduate medical students, while the Shoah has a unique place in history, the stories of the Resistance physicians’ courage and decency are deeply meaningful cross-culturally and cross-temporally. It is my hope that these stories, currently found only in books which seem to have been lost to the core medical curriculum, will come to be part of the narrative of doctoring. Such awareness can then sere as a foundation for responsible, relatively autonomous, and fundamentally authentic patient care under conditions of excessive administration, as it did under conditions of extreme adversity.

References