|ETHICS IN MEDICINE University of Washington School of Medicine
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The following is an excerpt from the book Clinical Ethics. Copyright permission to reproduce this excerpt has been generously granted by McGraw-Hill. We encourage you to read further in this useful resource book, available now in the newly revised 4th edition. Albert R. Jonsen, Mark Siegler, and William J. Winslade, Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 4th edition. New York: McGraw-Hill, Inc., 1998.
Clinical ethics is a practical discipline that provides a structured approach to assist physicians in identifying, analyzing and resolving ethical issues in clinical medicine. The practice of good clinical medicine requires some working knowledge about ethical issues such as informed consent, truth-telling, confidentiality, end-of-life care, pain relief, and patient rights. Medicine, even at its most technical and scientific, is an encounter between human beings, and the physician's work of diagnosing disease, offering advice, and providing treatment is embedded in a moral context. Usually, moral values such as mutual respect, honesty, trustworthiness, compassion, and a commitment to pursue shared goals, make a clinical encounter between physician and patient morally unproblematic. Occasionally, physicians and patients may disagree about values or face choices that challenge their values. It is then that ethical problems arise. Clinical ethics is both about the ethical features that are present in every clinical encounter and about the ethical problems that occasionally arise in those encounters. Clinical ethics relies upon the conviction that, even when perplexity is great and emotions run high, physicians and nurses, patients and families can work constructively to identify, analyze and resolve many of the ethical problems that arise in clinical medicine.
The authors have two purposes in writing this book: first, to offer an approach that facilitates thinking about the complexities of the problems that clinicians actually face and, second, to assemble concise representative opinions about typical ethical problems that occur in the practice of medicine. We think it is more important that clinicians develop skill at analyzing the cases they encounter rather than merely have a book in which "to look up answers." Our hope is that every clinician will acknowledge that ethics is an inherent aspect of good clinical medicine and that, ideally, every clinician will become as proficient at clinical ethics as clinical medicine. Our book is intended not only for clinicians and students who provide care to patients, but also for others whose work requires an awareness and sensitivity to the ethical issues raised in clinical care, such as hospital administrators, hospital attorneys, members of institutional ethics committees, quality reviewers and administrators of health plans. In the complex world of modern health care, all of these persons are responsible for maintain the ethics that lie at the heart of quality care.
Many books on health care ethics are organized around moral principles, such as respect for autonomy, beneficence, non-maleficence and fairness, and the cases are analyzed in the light of those principles. Our method is different. While we appreciate the importance of principles, we believe that the practitioner approaching a case needs a method that better fits the realities of the clinical setting and the reasoning of the clinician. Clinical situations are complex since they often involve a wide range of medical facts, a multitude of circumstances and a variety of values. Often decisions must be reached quickly. The authors believe that clinicians need a straightforward way to sort the facts and values of the case at hand into an orderly pattern that will facilitate the discussion and resolution of the ethical problem.
We suggest that every clinical case, when seen as an ethical problem, should be analyzed by means of four topics. These four topics are
Clinicians will recall the method of case presentation that they learned at the beginning of their professional training. They were taught to "present" a patient by stating in order the patient's history, including the chief complaint, the history of the present illness, past medical history, family and social history, followed by physical findings and laboratory data. These are the topics that an experienced clinician uses to reach a diagnosis and to formulate a case management plan. While the particular details under each of these topics differ from patient to patient; the topics themselves are constant and always relevant to the task of arriving at a case management plan. Sometimes one topic, for example, the patient's family history or the physical examination, may be particularly important or, conversely, may not be relevant to the problem at hand. Still, clinicians are expected to review all topics in every case. Our four topics -- (1) Medical Indications, (2) Patient Preferences, (3) Quality of Life, and (4) Contextual Features--are the ethical equivalents of these familiar clinical topics.
These topics help clinicians understand where the moral principles meet the circumstances of the clinical case. The general headings of the topics describe the major features that define the ethics of clinical medicine; each of these features takes on specific, concrete form from the circumstances of the particular case. In a given case, a patient comes to a physician, complaining of feeling ill. Medical Indications include a clinical picture of polydipsia and polyuria, nausea, fatigue and some mental confusion, with laboratory studies showing hyperglycemia, acidosis and elevated plasma ketone concentrations. A diagnosis of diabetic ketoacidosis is made. Fluids and insulin are indicated in specific doses and volumes. These particulars are the occasion for implementing the moral principle of beneficence, that is, the duty of performing actions that benefit the patient. However, in the same case, the patient may be confused and, after hearing the physician's recommendations, rejects further medical attention: these circumstances, noted under Patient Preferences, raise questions about the principle of autonomy, that is, the duty to respect the patient's wishes.. As the case is described, circumstances accumulate under all four of the topics and affect the meaning and relevance of the moral principles. It is advisable to review the entire four topics in order to see how the principles and the circumstances together define the ethical problem in the case and suggest a resolution. It is rare that an ethical problem involves only one ethical principle. Every actual ethical problem is a complex collection of many circumstances. Good ethical judgment consists in appreciating how several ethical principles should be evaluated in the actual situation under consideration. We hope our method helps practitioners to do just that.
We divide the book into four chapters, each one devoted to one of these four topics. These four chapters define the major concepts associated with each topic, present typical cases in which the topic under discussion plays a particularly important role, and critically review the arguments commonly offered to resolve the problem. For example, the case of a Jehovah's Witness patient who refuses blood transfusion will demonstrate how the topic of Patient Preferences functions in the analysis of the ethical problem raised by a patient's refusal of an indicated medical treatment. At the same time, the current opinion of medical ethicists on Jehovah's Witness cases will be summarized. Thus, a reader can use this volume as a reference book, looking up, for example, "refusal of treatment" or "Jehovah's Witnesses" in the Locator at the front of the book and reading the several pages devoted to that issue in chapter 2.
Those who use the book as a reference will find concise summaries of current opinion on the ethics of certain typical cases, such as those involving refusal of care or a diagnosis of persistent vegetative state. This may be all that they seek at the moment. However, the actual cases that clinicians encounter in practice will be more than typical: they will be a combination of unique circumstances and values. The four topics are, as it were, signposts that guide the way through the complexity of real cases. Thus, mastering the book's four-part method will serve the reader better than using it for occasional reference. We strongly suggest that readers first read the book from beginning to end to get the hang of the method. We hope they will become adept at bringing the method to bear on their own clinical cases.
This book was originally written for physicians specialized in internal medicine and concentrated on the ethical problems encountered by those making clinical decisions for patients in their practice. In subsequent editions, the scope was broadened to adult medicine in general and then to pediatrics. (The sections particularly relevant to pediatric ethics have P after their numbers in the text.) It also became obvious to the authors that many other health care providers, nurses, social workers, medical technicians, as well as chaplains and administrators, found our method useful. In this fourth edition, the original emphasis on clinical decisions made by physicians remains but we believe that others can fit the particular concerns and values of their own professions into the topics of the book.
We illustrate our method by a brief summary of a case familiar to many who have studied medical ethics, namely, the case of Donald "Dax" Cowart, the burn patient who related his experience in the videotape Please Let Me Die and the documentary, Dax's Case. 
Discussion of a case like this can begin by raising any number of questions. Did Dax have the moral or the legal right to refuse care? Was Dax competent to make a decision? Were the physicians paternalistic? What was Dax's prognosis? All these questions, and many others, are relevant and can give rise to vigorous debate. However, we suggest that an ethical analysis should begin by an orderly review of the four topics. We recommend that the same order be followed in all cases: (l) Medical Indications, (2) Patient Preferences, (3) Quality of Life, (4) Contextual Features. This procedure will lay out the ethically relevant facts of the case (or show where further information is needed) before debate begins It should be noted that this order of review does not constitute an order of ethical priority. The determination of relative importance of these topics will be explained in the four chapters.
Medical Indications. This topic comprises the usual content of a clinical discussion: the diagnosis and treatment of the patient's pathological condition. "Indications" refers to the relation between the pathophysiology presented by the patient and the diagnostic and therapeutic interventions that are "indicated," that is, appropriate to evaluate and treat the problem. Although this is the usual material covered in the presentation of any patient's clinical problems, the ethical discussion will not only review the medical facts, but also attend to the purposes and goals of any indicated interventions.
In Dax's case, the medical indications include the clinical facts necessary to diagnose the extent and seriousness of burns, to make a prognosis for survival or restoration of function, and the options for treatment, including the risks, benefits and probable outcomes of each treatment modality. For example, certain prognoses are associated with burns of given severity and extent. Various forms of treatment, such as fluid replacement, skin grafting and antibiotics are associated with certain probabilities of outcome and risk. After initial emergency treatment, Dax's prognosis for survival was approximately 20%. After six months of intensive care, his prognosis for survival improved to almost 100%. If his request to stop wound care and grafting during that hospitalization had been respected, he would almost certainly have died. A clear view of the possible benefits of intervention is the first step in assessing the ethical aspects of a case.
Patient Preferences. In all medical treatment, the preferences of the patient, based on the patient's own values and personal assessment of benefits and burdens are ethically relevant. In every clinical case, the questions must be raised: "What are the patient's goals? What does the patient want?" The systematic review of this topic requires further questions. Has the patient been provided sufficient information? Does the patient comprehend? Does the patient understand the uncertainty inherent in any medical recommendation and the range of reasonable options that exist? Is the patient consenting voluntarily? Is the patient coerced? In some cases, an answer to these questions might be "We don't know because the patient is incapable of formulating a preference or expressing one." If the patient is mentally incapacitated at the time a decision must be made, we must ask "Who has the authority to decide on behalf of this patient? What are the ethical and legal limits of that authority? What is to be done if no one can be identified as surrogate?
In Dax's case, a question about his mental capacity arose in the early days of his refusal of care. Had the physical and emotional shock of the accident undermined his ability to decide for himself? Initially it was assumed that he lacked the capacity to make his own decisions, at least about refusing life-saving therapy. The doctors accepted the consent of Dax's mother in favor of treatment, over his refusal of treatment. Later, when Dax was hospitalized in Galveston, psychiatric consultation was requested which affirmed his capacity to make decisions. Once capacity was established, the ethical implications of his desire to refuse care became central. Should his preference be respected? If not, on what grounds? Did Dax appreciate sufficiently the prospects for his rehabilitation? Are physicians obliged to pursue therapies they believe have promise over the objections of a patient? Would they be cooperating in a suicide if they assented to Dax's wishes? Any case involving the ethics of patient preferences relies on clarification of these questions.
Quality of Life. Any injury or illness threatens persons with actual or potential reduced quality of life, manifested in the signs and symptoms of their disease. The object of all medical intervention is to restore, maintain or improve quality of life. Thus, in all medical situations, the topic of quality of life must be raised. Many questions surround this topic: What does this phrase, "quality of life" mean in general? How should it be understood in particular cases? How do persons other than the patient perceive the patient's quality of life and of what ethical relevance are their perceptions? Above all, what is the relevance of quality of life to ethical judgment? This topic, which is less well worked out in the literature of medical ethics than the two previous ones, is perilous because it opens the door for bias and prejudice. Still, it must be confronted in the analysis of clinical ethical problems.
In Dax's case, we note the quality of his life prior to the accident. He was a popular, athletic young man, just discharged from the Air Force, after serving as a fighter pilot in Viet Nam. He worked in a real estate business with his father (who was also injured in the explosion and died on the way to the hospital). Before his accident, Dax's quality of life was excellent. During the course of medical care, he endured excruciating pain and profound depression. After the accident, even with the best of care, he was confronted with significant physical deficits, including notable disfigurement, blindness and limitation of activity. At some stage in his illness, Dax had the capacity to determine what quality of life he wished for himself. However, in the early weeks of his hospitalization, he was probably mentally incapacitated at the time critical decisions had to be made. When he was, others would have had to make certain "quality of life" decisions on his behalf. Was the prospect for return to a normal or even acceptable life so poor that no reasonable person would choose to live? Who should make such decisions? What values should guide them? The meaning and import of such considerations must be clarified in any clinical ethical analysis.
Contextual Features. Patients come to physicians because they have a problem that they hope the physician can help to correct. Physicians undertake the care of patients with the intent and the duty to make all reasonable efforts to help them. The topics of medical indications, patient preferences and quality of life bring out these essential features of the case. Yet every medical case is embedded in a larger context of persons, institutions, financial and social arrangements. Patient care is influenced, positively or negatively, by the possibilities and the constraints of that context. At the same time, the context itself is affected by the decisions made by or about the patient: these decisions have psychological, emotional, financial, legal, scientific, educational, religious impact on others. In every case, the relevance of the contextual features must be determined and assessed. These contextual features may be crucially important to the understanding and resolution of the case.
In Dax's case, several of these contextual features were significant.. Dax's mother was opposed to termination of medical care for religious reasons. The legal implications of honoring Dax's demand were unclear at the time (they are clearer today). The costs of sixteen months of intensive burn therapy are not insignificant (although this was not emphasized in the various discussions of the case). The distress caused to medical and nursing personnel by Dax's refusal to cooperate with treatment might have influenced their attitudes toward him. These and other contextual factors must be made explicit and assessed for their relevance.
These four topics are relevant to any clinical case, whatever the actual circumstances. They serve as a useful organizing device for teaching and discussion. More important, however, is the way in which a review of these topics can help to move a discussion of an ethical problem toward a resolution. Any serious discussion of an ethical problem must go beyond merely talking about it in an orderly way: it must push through to a reasonable and practical resolution. Ethical problems, no less than medical problems, cannot be left hanging. Thus, after presenting a case, the task of seeking a resolution must begin.
The discussion of each topic raises, or presupposes, certain common ethical notions. These notions propose certain standards of behavior or attitudes that are morally appropriate to the topic. They can be called moral principles or rules: rules tend to be quite specific to particular topics, while principles are stated in broader, more general terms. For example, one version of the principle of beneficence states, "There is an obligation to assist others in the furthering of their legitimate interests." The moral rule, "physicians have a duty to treat patients, even at risk to themselves," is a specific expression of that broad principle, suited to a particular sphere of professional activity, namely, medical care. The topic of medical indications, in addition to the clinical data that must be discussed, raises the further questions, "How much can we do to help this patient?" "What risks of adverse effects can be tolerated in the attempt to treat the patient?" Answers to these questions, arising so naturally in the discussion of medical indications, can be guided by familiar moral rules applied to medical ethics such as, "Be of benefit and do no harm" or "Risks should be balanced by benefits." Rules such as these reflect in a specific way the broad principle that the philosophers have named beneficence. Similarly, the topic of patient preferences contains rules that instruct clinicians to tell patients the truth, to respect their deliberate preferences, to honor their values, etc. Rules such as these fall under the general scope of the principles of autonomy and respect for persons.
Our method of analysis begins, not with the principles and rules, as do many other ethics treatises, but with the factual features of the case. We refer to relevant principles and rules as they arise in the discussion of the topics. In this way, abstract discussions of principles is avoided as is the tendency to think of only one principle, such as autonomy or beneficence, as the sole guide in the case. Moral rules and principles are best appreciated in the specific context of the actual circumstances of a case. For example, a key issue in Dax's case is the autonomy of the patient. However, the significance of autonomy in Dax's case is derived, not simply from the principle that requires we respect it, but from the confluence of considerations about preferences, medical indications for treatment, quality of life, decisional capacity, and the role of his mother, the doctors, the lawyers and the hospitals. Only when all these are seen and evaluated in relation to each other, will the meaning of the principle of autonomy be appreciated in this case.
Competence in clinical ethics depends not only on being able to use a sound method for analysis, but also on familiarity with the literature of medical ethics. Some readers will seek further elaboration of the issues dealt with so briefly in this introductory book. We direct these readers to a few sources where they will find, not only that elaboration, but references to the major literature. Thus, we place in brackets after our discussion of an issue references to The Encyclopedia of Bioethics (2), Principles of Biomedical Ethics (3), and Medical Ethics (4).
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