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Introduction

This book is about the ethical issues that clinicians encounter in caring for patients. In order to practice excellent clinical care, clinicians and those studying to become clinicians must understand ethical issues such as informed consent, truth telling, confidentiality, privacy, the distinction between research and clinical care, and end-of-life care. Clinicians must apply this knowledge in their daily practices. By clinicians we mean not only physicians and surgeons but also nurses, socialworkers, psychologists, clinical ethicists, medical technicians, chaplains, and others responsible for the welfare of patients. Some of these clinicians will also be members of ethics committees who deliberate about the ethics policies of their hospitals and about ethical problems in particular cases. Our audience also includes families and other persons close to patients, who may participate in decisions about their care. Our goal in writing this book is to help clinicians understand and manage the cases they encounter in their practices, and on those occasions when ethical disagreements emerge, to guide patients, families, clinicians, and ethics committees toward the resolution of clinical ethical conflicts.

Ethical issues are imbedded in every clinical encounter between patients and caregivers because the care of patients always involves both technical and moral considerations. The central feature of this clinical encounter is the therapeutic relationship between a physician and a patient, a relationship that is permeated with ethical responsibilities. Physicians must aim, in the words of Hippocrates, "to help and do no harm." Modern physicians approach the doctor–patient relationship with a professional identity that includes the obligations to provide competent care to the patient, to preserve confidentiality, and to communicate honestly and compassionately.

In the usual course of a therapeutic relationship, clinical care and ethical duties run smoothly together. The reason is that generally the patient and physician share the same goal: to respond to the medical problems and needs of the patient. For example, a patient presents with a distressing cough and wants relief; a physician responds to the patient by utilizing the correct means to diagnose and treat this condition. In this situation, the treatment for, say, a mild asthma attack is effective and the patient is satisfied. At the same time an ethical action has taken place: the patient is helped and not harmed. In other cases, this simple scene becomes complicated. The patient's asthma may be caused by a cancer obstructing the airway. This disease may be life-threatening and the treatment may be complex, difficult and may prove unsuccessful. On other occasions, the smooth course of the doctor–patient relationship may be interrupted by what we call an ethical question: a doubt about the right action when ethical responsibilities conflict or when their meaning is uncertain or confused. For example, the physician's duty to cure is countered by a patient's refusal of indicated treatment, or the patient cannot afford treatment because of lack of insurance. The principles that usually bring the clinician and the patient into a therapeutic relationship seem to collide. This collision blocks the process of deciding and acting that is intrinsic to clinical care. This confusion and conflict can become distressing for all parties. This book, then, aims to elucidate both the ethical dimensions of care in ordinary clinical activities that are not controversial, as well as when doubt about right action blocks decision.

Clinical ethics, then, is a structured approach to ethical questions in clinical medicine. Clinical ethics depends on the larger discipline of bioethics, which in turn draws upon disciplines such as moral philosophy, health law, communication skills, and clinical medicine. The scholars called "bioethicists" must master this field. However, clinicians in the daily practice of medicine can manage with a basic understanding of certain key ethical issues such as informed consent and end-of-life care. Central to the practical application of clinical ethics is the ability to identify and analyze an ethical question and to reach a reasonable conclusion and recommendation for action. In this book, we provide a method to identify the ethical dimensions of patient care and to analyze and resolve ethical problems. This method is useful for structuring the questions faced by any clinician who cares for patients.

THE FOUR TOPICS

Bioethics identifies four ethical principles that are particularly relevant to clinical medicine: the principles of beneficence, nonmaleficence, respect for autonomy, and justice. To these, some bioethicists add empathy, compassion, fidelity, integrity, and other virtues. The bioethical literature discusses these principles and virtues at length. In this book, we only explain them briefly. We rather direct our reader's attention to how these general principles interact within the concrete circumstances of a clinical case, and howthey serve as guides to action in specific circumstances. Thus we propose four topics that we believe constitute the essential structure of a case in clinical medicine, namely, medical indications, patient preferences, quality of life, and contextual features.

Some users of this book call these four topics "the Four Boxes." Every clinical case is a mass of detail that the clinician must interpret in order to carry out the reasoning process necessary for diagnosis and treatment. Every clinician learns early in training a common pattern for organizing that mass of detail: chief complaint, history of the chief complaint, general medical history of the patient, results of physical examination, and results of laboratory studies. The data that are sorted into these patterns lead the clinician to decisions about diagnosis and treatment. Our four topics or boxes provide a similar pattern for collecting, sorting, and ordering the facts of a clinical ethical problem. Each topic or "box" is filled with the actual facts of the clinical case that are relevant to the identification of the ethical problem, and the contents of all four are viewed together for a comprehensive picture of the ethical dimensions of the case.

Medical indications refer to the diagnostic and therapeutic interventions that are being used to evaluate and treat the medical problem in the case. Patient preferences state the express choices of the patient about their treatment, or the decisions of those who are authorized to speak for the patient when the patient is incapable of doing so. Quality of life describes features of the patient's life prior to and following treatment, insofar as these features are pertinent to medical decisions. Contextual features identify the familial, social, institutional, financial, and legal settings within which the particular case takes place, insofar as they influence medical decisions. Under each of these headings, a series of questions are posed to assure that needed information has been gathered.We believe that these four topics are the essential and constant constituents of any clinical case, which is, of course, unique and varying in its own circumstances. The chart at the end of this introduction depicts these four topics and the relevant questions.

The subtitle of our book states that clinical ethics is a practical approach. This implies that the approach must go beyond simply identifying the problem, by collecting and sorting the facts of the case. It must guide practice, that is, it must lead from identification of the ethical problem to decisions about how to manage the problem. It must show the clinician how to manage those obstacles to decision making that the ethical problem had posed. Clinical ethics is seldom a matter of deciding between ethical versus unethical, between good and right versus bad and wrong; rather it involves finding the better, most reasonable solutions among the relevant options. While clinical ethics can sometimes help to rule out options that are unethical, more frequently, clinical ethics can clarify a range of permissible options that patients and clinicians may choose. Our approach seeks to guide the clinician, and others involved in the case, toward such resolutions.

After all relevant information is gathered into the Four Boxes, the relationship between that information and the principles must be assessed. It sometimes happens that when the data is collected and properly sorted, an obvious pattern appears that will identify the ethical problem. The circumstances of a case often point to one of the fundamental principles as most important in the specific case analysis. For example, a patient has a critical disease in its terminal stage, has never expressed preferences about treatment, has no relatives to speak for him, and faces great suffering during the time remaining. This appears at first sight as a case in which the principles of beneficence and nonmaleficence are central. Further, aggressive treatment is no longer likely to be beneficial; this patient needs palliative care. At second sight, however, the question becomes a matter of the principle of respect for autonomy: who is authorized to make the decision to transition from intensive to palliative care? Ethical reflection moves from this dilemma between two fundamental principles to an evaluation of how the circumstances of the case give greater weight to one or the other of these principles. For example, after all reasonable attempts to effectively treat a patient have failed, the continued application of aggressive measures causes more harm than good to this patient. In this light, the principle of nonmaleficence becomes the most dominant one, and provides an ethical reason for a decision to provide only palliative care. The clinician can then formulate a recommendation to the patient or other decision makers.

This resolution of the case is based on an assessment of the facts of the case in relation to the ethical principles relevant to the case. However, this assessment calls for a further move: the present case must be compared to similar cases. It is certainly true that in medicine every case is unique, and every patient "a statistic of one." Nevertheless, the case at hand will have similarities with other cases. Other cases may have been thoughtfully considered—perhaps even adjudicated in the law—and may provide guidance whereby to assess the present case. Such cases are called paradigm cases. Reference to paradigm cases do not prove that a case is correctly assessed; rather they are examples of serious assessments in prior, similar cases, to which the current case can be compared, in order to guide the clinician in this case. It is important to note that even similar cases have variable nuances. The present case may have circumstances that make it more complex than previous cases; or it may represent a novel problem due to innovative technology. Clinicians and ethicists should be familiar with these paradigm cases, and be able to discern how they differ and how the circumstances bond with principles in the current case. We describe some of the important paradigm cases.

This book is arranged to follow the four-box model. Each chapter is devoted to one of the four topics. Each chapter begins with some general considerations and ethical principles most relevant to that topic. A series of questions that exemplify major issues under each topic are posed. Clinical situations that commonly generate ethical problems associated with that topic are stated and illustrated by cases. A COMMENT that provides a distillation of prevailing opinion from the bioethical literature follows.We conclude with RECOMMENDATIONS that the three authors formulate from their own extensive experience as clinicians and clinical ethics consultants. Although this book does not discuss pediatric ethics, at the end of each chapter we have placed "Pediatric Notes" to alert readers about certain ethical problems in pediatric medicine that require special consideration. When these arise, the sources for pediatric ethics should be consulted. One such source is Frankel LR, Goldworth A, Rorty MV, Silverman WD. Ethical Dilemmas in Pediatrics. Cambridge, MA: Cambridge University Press; 2005.

RESOURCES IN CLINICAL ETHICS

In addition to our method for identifying and assessing a case in ethical terms, we also provide capsules of essential information about common problems, such as Orders Not to Resuscitate or Withholding Life Support. The issues that we treat in capsule form have been discussed and debated in the ever-increasing literature of bioethics. We refer readers to certain sources where they can find more extended discussions and references, and complete references are provided at the end of this section. The standard text of scholarly bioethics, in which basic concepts are amply explained, is Principles of Biomedical Ethics. The major reference work in medical ethics is Encyclopedia of Bioethics. We regularly refer to three books that contain fuller treatments of the matters that we treat only in capsule form. They are Resolving Ethical Dilemmas: A Guide for Clinicians; The Oxford Handbook of Bioethics; and The Cambridge Textbook of Bioethics. Our pages regularly refer to their relevant chapters. Another book collects cases that represent difficult problems confronting clinical ethicists: Complex Ethics Consultations: Cases that Haunt Us. A number of journals are now dedicated to bioethics: The Hastings Center Report, The American Journal of Bioethics, Journal of Medical Ethics, Cambridge Quarterly of Healthcare Ethics, Journal of Theoretical Medicine, and Journal of Clinical Ethics. Also, articles on bioethics appear regularly in the medical and nursing journals. We do not reference this extensive journal literature, unless we use data drawn from an article or an article is "classic" in defining and describing an issue. This literature is indexed at PubMed and Medline at the National Library of Medicine's Bioethics Portal (www.nlm.nih.gov/bsd/bioethics.html). Extensive bibliographic resources can be found at the National Reference Center for Bioethics Literature at Georgetown University's ETHXWeb (http://bioethics.georgetown.edu/databases/index.htm); Clinical Ethics Center of the National Institutes of Health (www.nih.gov/sigs/bioethics); and, for cases and discussions, the American Medical Association's online journal Virtual Mentor is an excellent resource (http://virtualmentor.amaassn.org). The Web site UpToDate (www.uptodate.com) contains a number of useful reviews of major topics, as does the Web site of the University of Washington Department of Bioethics and Humanities (http://depts.washington.edu/bhdept). Of less relevance to ethics at the bedside, but still helpful, is United Nations Educational, Scientific and Cultural Organization's Global Ethics Observatory (http://www.unesco.org/shs/ethics/geobs). Also see McGraw-Hill's AccessMedicine Web site (www.accessmedicine.com) for thousands of images and illustrations, interactive assessment, case files, diagnostic tools, and up-to-date information for research, education, self-assessment, and board review.

ACKNOWLEDGEMENTS

The authors gratefully acknowledge the advice and assistance of the following people: Drs. Katrina Bramstedt, David Brush, Michael Cantwell, Farr Curlin, Lainie Ross, William Stewart, and Daniel Sulmasy, as well as Ms. Helene Starks, Ms. Donna Vickers, and Mr. Wesley McGaughey.

BIBLIOGRAPHY

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