PREVENTIVE

MEDICINE

4, 398-403

(1975)

EDITORIAL

Protection of Patients’ Rights and the Doctor-Patient Relationship’ EDMUND D. PELLEGRINO Yale-New Haven Medical Center, Inc., New Haven, Connecticut 06504

For centuries, physicians have spoken of their relationships with their patients as something sacred - something not to be profaned by change and immune even in the convulsed world of the twentieth century. To question that traditional relationship is to threaten young and old physicians alike. Yet, it is precisely that traditional image that will be profoundly transformed in the years immediately ahead, and that transformation will constitute a major ethical challenge your generation of physicians is likely to encounter. For this reason, I have chosen to reflect briefly on the nature of the physician’s relationship with his or her patients. Every member of this graduating class has already formed some image of how he hopes to relate as a person and as a physician to his patients. That image is compounded of his own personality, of the models he has observed, and of the traditions he has imbibed. It embodies his hopes and anxieties, and it is the vehicle through which he will give more or less of himself to those who seek his help. Young as you may be and intellectually convinced as you think you are for change, you will find the adaptation of which I shall speak to be your most difficult personal task. Your satisfaction with your work and your effectiveness will be determined to a large degree by the way you perceive what changes in your present image are demanded by time and the altered cultural milieu in which you will practice. Your elders have perceived only the first indications of these changes. Some are frightened, some angry and confused, some disaffected enough to give up medical practice. What will your responses be? Will you try to hold on to the traditional image? Or will you see in the new relationships the opportunity for deeper, more adult, and more satisfying relationships with the persons you treat? Whatever position you may eventually take, it is clear that the simple, age-old, one-to-one medical transaction is being intruded upon by a series of powerful forces- the deepening scientific and technologic base of medicine, the improved education of the public, the institutionalization of medical care, and the actualization of democracy for more of our citizens. The full impact of these forces ’ Commencement address given at New Jersey Medical School and the Graduate School of Biomedical Sciences of the College of Medicine and Dentistry of New Jersey, May 31, 1973. 398 Copyright AU &hts

0 1975 by Academic Press, Inc. of reproduction in any form reserved.

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is yet to be felt, but we can discern them already in the new demands from those we serve-demands for better information about things medical, calls for greater professional accountability and competence, a move to more regulatory bodies or for health care advocates. Let us look very briefly at the origins of the traditional image, then at a few of the more sensitive points of change, and the new rights of patients that emerge from these considerations. To accommodate these new rights, we must expand and update our codes of medical ethics to include them among the duties of physicians. The traditional doctor-patient image is based on several thousand years of practice in Western medicine, and it derives its ethical foundations in the works of Hippocrates. The Hippocratic Oath and the other so-called ethical books place great emphasis on the duty of the physician to help the patient and preserve him from harm. There are exhortations to confidentiality, prohibitions against certain practices, and advice on humility and proper behavior in dealing with the patient and his family. The physician is invested with expertise and unlimited authority for making decisions, and, by and large, he is expected to take upon himself the advocacy for the patient’s well-being. He emerges as a benign but authoritarian figure, isolated in his heroic struggle against disease. There is little or nothing in the Hippocratic works about dialogue with patients as consenting adults, and there are no prescriptions to engage them in the decisions that affect them or even to disclose what will be happening to them. As a matter of fact, the contrary is the case. In Decorum, the doctor is advised to “conceal most things from the patient” and to “reveal nothing of the patient’s present and future condition” (3). This same spirit permeated the code of Thomas Percival, which later became the basis for the AMA Code of Ethics and all subsequent codes. Only recently, when the potential abuses of human experimentation became a reality, was valid and free consent included in ethical codes. But in most therapeutic transactions, the matters of disclosure and consent are still handled in the ancient way. The recently published “Patients’ Bill of Rights of the American Hospital Association” calls for adequate information about the medical problem, but it does not establish valid consent as an essential right for every patient in a democratic society. Yet, it is the failure to recognize this emergent right that is a major source of patient discontent, anxiety, and litigation. Indeed, this right is so fundamental in a free society that to limit it in the medical transaction is a transgression of justice. The educated and responsible patient wants to base his trust in a firm conviction that the physician’s capabilities are being used with full respect for the integrity of his own intellect and will. He wants to understand what the doctor is doing, why he is doing it, what the alternatives may be, and what the future will mean for the things he values most. In a democratic society, every person will want the greatest protection of his rights to self-determination, and the medical situation involves some of the most significant spheres for self-determination. When treatment is specific, with few choices open, the prognosis good, and the side effects minimal, disclosing the essential information is an easy matter. Unfortunately, medicine frequently deals with indefinite diagnoses and non-

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specific treatments of uncertain value. Several alternatives are usually open; prognosis may not be significantly altered by treatment; side effects and discomfort are often considerable. The patient certainly has the right to know these data before therapeutic interventions are initiated. The Nuremberg Code and others were designed to protect the subject in the course of human experimentation by insisting on the right of informed and free consent. The same right should be guaranteed in the course of ordinary medical treatment as well. The physician is expected by the patient and society to use disclosure prudently. For the very ill, the very anxious, the poorly educated, the too young, or the very old, he will permit himself varying degrees of disclosure. The modes of doing so must be adapted to the patient’s educational level, psychologic responses, and physiologic state. It must be emphatically stated that the purpose of disclosure of alternatives, costs, and benefits in medical diagnosis and treatment is not to relieve the physician of the onus of decision or displace it on the patient. Rather, it permits the physician to function as the technical expert and adviser, inviting the patient’s participation and understanding as aids in the acceptance of the decision and its consequences. This is the only basis for a mature, just, and understandable physician-patient relationship in a democratic society. Another potent influence on the transformation of our relationships with our patients lies in the increasing institutionalization and bureaucratization of medical care. No ancient code of ethics could have foreseen the new intrusions on that relationship created by moving medical care to hospitals, groups, teams, and organizations of all types. The personal contract is now with an agency of society or government, and the patient and his physician are units within that matrix. The health care team is essential to the practice of comprehensive medicine. Physicians and nonphysicians now cooperate in providing the full spectrum of services made possible by modern technology. The responsibility for even the most intimate care of the patient is shared. Some of the most important clinical decisions are made by team members who may have no personal contact at all with the patient. The team itself is not a stable entity of unchanging composition. Its membership changes in response to the patient’s needs. Preserving the traditional rights of the patient, formerly vested in a single identifiable physician, is now sometimes spread anonymously over a group. Competence, confidentiality, integrity, and personal concern are far more difficult to assure with a group, of diverse professionals enjoying variable degrees of personal contact with the patient. Thus, the most delicate of the physician’s responsibilities, protecting the patient’s welfare, must now be fulfilled in a new and complicated context. Instead of the familiar one-to-one unique relationship, the physician finds himself coordinator of a team, sharing with others some of the most sensitive areas of patient care. The physician is still bound to see that group assessment and management are rational, safe, and personalized. He must especially guard against the dehumanization SO easily and inadvertently perpetrated by a group in the name of efficiency. The doctor must acquire new attitudes. Since ancient times, he has been the

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sole dominant and authoritarian figure in the care of his patient. He has been supported in this position by traditional ethics. In the clinical emergency, his dominant role is still unchallenged, since he is well trained to make quick decisions in ambiguous situations. What he is not prepared for are the negotiations, analyses, and ultimate compromise fundamental to group efforts and essential in nonemergency situations. A whole new set of clinical perspectives must be introduced, perspectives difficult for the classically trained physician to accept but necessary if the patient is to benefit from contemporary technology and organization of health care. Humaneness and compassion are two dimensions of care most endangered in our institutional care. These qualities are difficult to measure, yet there are some very important rights of patients that should be more fully assured in any really adult relationship with our patients in the future. First, we must satisfy the fundamental questions every person who is ill and anxious brings to the physician. The patient wants to know: What’s wrong? How did he get that way? Is it serious? Can you cure it? What will it cost in money and loss of dignity? What are you going to do? Will it hurt? These are simple questions. But to an alarming degree, patients may see many doctors, have many tests, pay many bills, and not receive answers to these simple questions. The issuance of a diagnosis and a standardized explanation may be convenient for the physician or all his time will permit. Yet, this can be the first step in making the patient an object and not a person. Each patient wants answers to all these questions put into the context of his life. This is more than individual treatment, which merely means treatment as a unit. Personal treatment, instead, gets at the uniqueness of the person behind the unit. Or, as Thomas Merton said so sagely, “The person must be rescued from the individual” (5). Physicians who have neither time nor inclination for this degree of personalization are bound by the first rule of humaneness to see that other members of the health care team are permitted to answer the personal questions that lie at the root of the patient’s plea for help. Second, we must accept the patient for what he is, not what we think he should be. The German novelist Hermann Hesse puts it well: “No man has ever been entirely and completely himself. Yet each strives to become that -one in an awkward, the other in an intelligent way” (2). To be compassionate, we must accept each person’s striving- the ignorant and the intelligent, the successes, the failures, the poor, the wise, the weak, and the strong, and even the evil ones. All must receive our expression of willingness to help. This is impossible unless we continue to grow as persons ourselves. “If the doctor wants to help a human being, he must be able to accept him as he is. And he can do this in reality only when he has already seen and accepted himself as he is” (4). We can never feel with another person when we pass superior judgment, only when we see our own frailties as well as his. Third, we must handle our authority in a humane way that respects the life values of the patient. The health professional is always in danger of extending his authority in technical matters over the patient’s system of beliefs and values. Dag Hammarskjold articulated the unique responsibility of those in authority

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thus: “Your position never gives you the right to command. It only imposes on you the duty of so living your life that others can receive your orders without being humiliated” (1). This is sound advice to which we must attend whether we deal with patients, or students, or our own professional colleagues. It has an important corollary: We must not “put down” the patient when he detects our uncertainties and even our errors. To be humane, we must ever be ready, as Galileo said, “to pronounce that wise, ingenious, and modest statement - ‘I do not know.“’ Compassion, practiced in these terms in each individual patient transaction, is the irreducible base for mitigating the inherent dehumanizing tendencies of today’s highly institutionalized and technologically oriented patterns of patient care. The student’s distress with deficiencies in our present system is meaningless unless he realizes he can remedy them by first humanizing his own relationships with his patients. Unless we come to regard our relationship with our patient as a transaction between free individuals capable of a mutual decision that respects the integrity of the values of both the patient and the physician, we’will succumb to the most subtle danger of institutionalized medicine-the bureaucratic spirit. When we deal with large numbers of people, there are good reasons for routinization, standardization, and emphasis on productivity. But in gaining these advantages, we can easily corrode the idea of service and confuse it with mere performance of a function, doing one’s job for such-and-such remuneration or serving the institution and not the patient. I am disturbed by how frequently people speak to me of serving the government, the university, or the hospital and how infrequently of serving the patients in those institutions. Most pernicious of all is the tendency to “groupthink” -the demand for group concurrence, which can override the rights and values of both the patient and the physician. On the other hand, institutionalization can work to the advantage of the patient, and herein lies one of the more sensitive problems for the physician of the future. The sacred relationship will be more frequently inquired into than before. The trend to peer review of quality of care, the institution’s surveillance of drug usage, the utilization of hospital facilities, and the demands for greater accountability by hospitals and boards of trustees for the actions of the professionals within their institutions-all of these call for a reexamination of the relationship of the doctor with his patient. This delicate issue must be approached with the utmost of care, yet I believe that it will eventuate in better care for the patient, a more complete protection of his rights, and a more authentic fulfillment of institutional responsibility. It will, on the other hand, be perhaps the most difficult change for even you, the young, to accept in the traditional private contract between doctor and patient. I have selected just a few of the more subtle and more sensitive realms in which the relationship of tomorrow’s physician with tomorrow’s patients will be significantly transformed. I did not speak of many of the more dramatic new rights of patients- the right to die with dignity, the right to refuse treatment and still receive care, the right of privacy and confidentiality. All of these rights turn ultimately on the quality of our relationship with the patient. When that rela-

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tionship is based in a truly adult, mutually trusting situation, the possibility for dealing with these and unforeseen ethical issues is enhanced. REFERENCES 1. Hammarskj8ld, D. “Markings,” p. 105. Alfred A. Knopf, New York, 1965. 2. Hesse, H. “Demian,” prologue. Bantam Books, New York, 1970. 3. Jones, W. H. S. (Trans., Ed.) “Hippocrates,” Vol. I, pp. 297, 299. Harvard University Press, Cambridge, 1923. 4. Jung, C. “Psychological Reflections” (Jolande Jacobi, Ed.), p. 90. Bollingen Series XXI, Princeton, 1970. 5. Merton, T. “New Seeds of Contemplation,” p. 38. New Directions, New York, 1961.

Protection of patients' rights and the doctor--patient relationship.

PREVENTIVE MEDICINE 4, 398-403 (1975) EDITORIAL Protection of Patients’ Rights and the Doctor-Patient Relationship’ EDMUND D. PELLEGRINO Yale-New...
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