I. Introduction: Bioethics and Ethical Theory Introduction to Ethics -Jay Katz, Informed ConsentMust It Remain a Fairy Tale? pp.

89-96 1) Prehistory of Informed Consent in Medicine -prior to any medical intervention, physicians must seek informed consent, 1957/1960 -radical break from customary practice -transformation of medicine made it imperative for informed consent to emerge -physicians could not accept because according to Churchill, informed consent remained an enigma wrapped in a mystery -throughout ages physicians believed they should make treatment decisions according to Hippocratic OathI swear by Apollo and Aesculepius that I will follow that system of regimen which according to my ability and judgment I consider for the benefit of my patients -patient not mentioned as consideration in ability and judgement. Physicians admonished to conceal most things from patient while attending to him; to give necessary orders with cheerfulness and serenity and revealing nothing of the patients future or present condition. 1847 patients obey to prescriptions of physician and never permit own crude opinions to influence attention of physicians. -physicians- gentlemen, patients-fellow creatures -autonomy and individual rights of recent opinion -early 1950s---Talcott Parsons---physician is a technically competent person whose competence and specific judgments and measures cannot be competently judged by the layman and that the latter must take doctors judgments and measures on authority because: I. physicians esoteric knowledge acquired in course of arduous training and practical experience cannot be comprehended by patients. Physicans can translate to patients, but have had little communication experience to do so. II. patients, because of their anxieties of being ill and consequent regression to childlike thinking, are incapable of making decisions on their own behalf. Illness may rob patient of autonomy. III. physicians commitment to altruism is a sufficient safeguard for preventing abuses of their professional authority. Altruism mainly professional, missing and granted protection, altruism can only promise that doctors will try to place their patients medical needs over their own personal needs. Altruism cannot promise that physicians will know without inquiry, patients needs. Patients and doctors do not necessarily have an identity of interest about matters of health and illness, both seek restoration of health and cure and whenever such ends are attainable by one route their interests may coincide. Quality of life shaped decisively by available treatment options, so health and cure in variety of ways. A doctors altruism notwithstanding, his agenda and value system are not the same as those of the patient. That is the fallacy in the concept of beneficence so cherished by many physicians---Nuland 2) Age of Medical Science and Informed Consent -beginning of 20th century. Introduction of scientific reasoning into medicine aided by results of research permitted doctors for the first time to discriminate more aptly between knowledge, ignorance and conjecture in their recommendations for or against treatment. And the technological advances in diagnosis and treatment of disease spawned by medical science provided patients and doctors with ever increasing therapeutic options with own benefits and risks.

-possible, imperative to give patients a voice in medical decisionmaking since knowledge and ignorance can be better specified and since a variety of treatments are available, each which can benefit or harm, and since patients choose lifestyle. -yet, conversations between patients and physicians not altered. Silence only deepened once laboratory data inscribed, machines looked at numbers, x-rays and electrocardiograms spoke instead of patients. -the diagnosis of patient diseases would yield objective, scientific data to the point of becoming algorithms. Treatment, required subjective data from patients and would be influenced by doctors subjective judgments, often over looked for objectivity, and also overlooked was possibility that greater scientific understanding of the nature of the disease and its treatment facilitated better communication with patients. 3) Impact of Law -1957 california, 1960 Kansas, new technologies were employed which promised great benefits but also exposed patients to formidable and uncontrollable harm. Schroeder--- to disclose and explain to the patient, in language as simple as necessary, the nature of the ailment, the nature of the proposed treatment, the probability of success or of alternatives, and perhaps the risks of unfortunate results and unforeseen conditions within the body. -faults of informed consent include: I. limited in scope, designed to specify those minimal disclosure obligations that physicians must fulfill to escape legal liability for alleged nondisclosures. It was shaped and confined by legal assumptions about objectives of the laws of evidence and negligence and by the economic philosophies as to who should assume the financial burdens for medical injuries sustained by patients. Doctrine grounded not in battery law but in negligence law. Battery law trespass, gives doctors defense that they have made adequate disclosure. Negligence law permits doctors to invoke many defenses like therapeutic privilege not to disclose when in judgment may harm patients welfare. -california case reduced scope of therapeutic privilege by requiring that in instances of hopeless prognosis, the patient be provided with such information by asking If not the physicians duty to disclose a terminal illness, then whose? The duty to disclose prognosis had never before been identified specifically as one of the disclosure obligations in an informed consent opinion -so, patients have a right to make decisions not only about the fate of their bodies but about the fate of their lives as well. II. not designed to serve as a medical blueprint for interactions between physicians and patients, need better communication, disclosure practices only changed to the extent of physicians disclosing more about risks of a proposed intervention in order to escape legal liability. III. that from now on patients and physicians must make decisions jointly with patients ultimately deciding whether to accede to the doctors recommendations. Patients must trust to doctors silently. Conversation, to comport with the idea of informed consent, ultimately requires that both parties make decisions jointly and that their views and preferences be treated with respect. Trust, based on blind faith, on passive surrender to oneself or another, must be distinguished from trust that is earned after having first acknowledged to oneself and the shared with the other what one knows and does not know about the decision to be made. If all of that had been considered by physicians they would have appreciated that a new model of doctor-patient communication that takes informed consent seriously required a radical break with current medical disclosure practice. IV. The idea of joint decisionmaking is one thing, the application of it in practice of another. To translate social policy into medical policty is a difficult task. Requires reassessment of professional authority to make decisions for patients in light of the consequences of such conduct for the well-being of patients,

and a reassessment of the limits of patients capacities to assume responsibility for choice in the light of their ignorance about medical matters and their anxieties when ill. 4) Barriers to Joint Decisionmaking A. Medical Uncertainty -Lewis Tomas---The only valid piece of scientific truth about which I feel totally confident is that we are profoundly ignorant about nature It is this sudden confrontation with the depth and scope of ignorance that represents the most significant contribution of twentieth-century science to the human intellect. We are, at last, facing up to it. In earlier times, we either pretend to understand or ignored the problem or simply made up stories to fill the gap. -Alvan Feinstein---Clinicians are still uncertain about the best means of treatment for even such routine problems as a fractured hip, a peptic ulcer, a stroke, a myocardial infarctionAt a time of potent drugs and formidable surgery, the exact effects of many therapeutic procedures are dubious or shrouded in dissension. -obstacle to informed consent----sharing uncertainties requires physicians to be more aware of them than they commonly are. They must learn how to communicate them to patients and they must shed their embarrassment over acknowledging the true state of their own and of medicines art and science. Thus, sharing uncertainties requires a willingness to admit ignorance about benefits and risks; to acknowledge the existence of alternatives, each with its own known and unknown consequences to eschew one single authoritative recommendation; to consider carefully how to present uncertainty so that patients will not be overwhelmed by the information they will receive; and to explore the crucial question of how much uncertainty physicians themselves can tolerate without compromising their effectiveness as healers. -acknowledgement of uncertainty is undermined by the threat that it will undermine doctors authority and sense of superiority. To feel superior to those dependent persons who are sick, is after all a motivating factor that often influences their choice of medicine as a profession. All this suggests that implementation of the idea of informed consent is, to begin with, not a patient problem but a physician problem. B. Patient Incompetence -Groping half-hearted and misleading attempts to inform patients about uncertainty and other matters which make a doctors communications so confusing and incomprehensible. If patients appear stupid and ignorant, this should come as no surprise, nor should patients resigned surrender to the dilemma: you are the doctor, you decide. Debatable that paternalism exists in medicine to fulfill a need created by illness, then informed consent is ab initio fatally compromised. (stick to the side of beneficence) C. Patient Autonomy Primum non nocere (above all do no harm) Hippocratic duffy medicine beneficience -Beauchamp and Childress----Autonomy is a form of personal liberty of action where the individual determines his or her own course of action in accordance with a plan chosen by himself or herself (Respect for individuals as autonomous agents entitles them) to such autonomous determinations without limitation on their liberty being imposed by others. -Beneficience requires not only that we treat persons autonomously and that we refrain from harming them, but also that we contribute to their welfare including their health. Thus the principle asserts the duty to help others further their important and legitimate intereststo confer benefits and actively to prevent and remove harms and to balance possible goods against the possible harms of action. -if informed consent is ever to be based on the postulate of join decision making, the obligation to respect the autonomous choices and actions of others must be honored. Otherwise, informed consent

is reduced to doctors providing more information but leaving decision making itself to the authority of physicians. 6) The Current State of Physician Patient Decision Making -Nuland does not expect the doctor to understand my values, my expectations for myself, or my philosophy of life. That is not what he is trained for and that is not what he will be good at. Doctors can impart information, but it behooves every patient to study his or her own disease and learn enough about it. Patients should no longer expect from so many of our doctors what they cannot give. -Nulands view on current state of physician patient decisionmaking, so dominated by physicians judgment as to what is the best. fear of failure of doctor ----A need to control that exceeds in magnitude what most people would find reasonable. When control is lost, he who requires it is also a bit lost and so deals badly with the consequences of his impotence. In an attempt to maintain control, a doctor, usually without being aware of it, convinces himself that he knows better than the patient what course is proper. He dispenses only as much information as he deems fit, thereby influencing a patients decision making in ways he does not recognize as self-serving. -meaningful collaboration between physicians and patients cannot become a reality until physicians learn (1) how to treat their patients not as children but as the adults as they are (2) how to distinguish between their ideas of the best treatment and their patients ideas of what is best (3) how to acknowledge to their patients (and often to themselves as well) their ignorance and uncertainties about diagnosis, treatment, and prognosis (4) how to explain to patients the uncertainties inherent in the state of the art and science of medicine which otherwise permits doctors on the basis of their clinical experience to leave unacknowledged that their colleagues on the basis of their clinical experience have different beliefs as to which treatment is best. -doctors authority resides in the medical knowledge they possess, in their capacity to diagnose and treat, in their ability to evaluate what can and cannot be diagnosed, what is treatable and what is not, and what treatment alternatives to recommend, in knowing better than others the certainties and the uncertainties that accompany diagnosis, treatment, prognosis, health and disease, as well the extent and limits of their scientific knowledge and scientific ignorance. Moral authority not undermined by caring view of interacting with patients. -Physicians must learn to face up to and acknowledge the tragic limitations of their own professional knowledge, their inability to impart all their insights to all patients, and their own personal incapacities--at times more pronounced than others---to devote themselves fully to needs of patients. They must learn not to be unduly embarrassed and to trust their patients to react appropriately to such acknowledgement. From all this it follows that ultimately the moral authority of physicians resides in their capacity to sort out with patients the choices to be made. -Duty and caring interwoven, physicians the duty to respect patients as persons so that care will encompass allowing patients to live their lives in their own self-willed ways. To let patients follow their own lights is not an abandonment but it is a duty that doctors must obey however painful. -Without fidelity to these duties, true caring eludes physicians. Much new to be learned about caring that in decades to come will constitute the kind of caring that doctors in the past have wished for but have been unable to dispense and that patients may have always yearned for.