The views expressed herein by Kenneth A. Berkowitz are his and do not necessarily reflect the views of the VHA National Center for Ethics in Health Care, the Veterans Health Administration, or the Department of Veterans Affairs.
The views expressed herein by Jack Kilcullen do not necessarily reflect those of the Washington Hospital Center.
The views expressed herein by Tia Powell do not necessarily reflect those of the New York State Task Force on Life and the Law.
Nothing contained in this book is meant to imply or suggest any sponsorship, affiliation, or endorsement by Montefiore Medical Center of any of the opinions or positions taken in the book.
∫ 2007 The Johns Hopkins University Press All rights reserved. Published 2007 Printed in the United States of America on acid-free paper 987654321
The Johns Hopkins University Press 2715 North Charles Street Baltimore, Maryland 21218–4363 www.press.jhu.edu
library of congress cataloging-in-publication data
Post, Linda Farber.
Handbook for health care ethics committees / Linda Farber Post, Jeffrey Blustein, and Nancy Neveloff Dubler. p.; cm.
Includes bibliographical references and index.
ISBN 0-8018-8448-9 (pbk. : alk. paper)
1. Medical ethics committees—Handbooks, manuals, etc.
I. Blustein, Jeffrey. II. Dubler, Nancy N. III. Title.
A catalog record for this book is available from the British Library.
To all the health care ethics committees whose work continually enhances the quality of health care
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The Role of Ethics in Clinical Medicine, 12 Ethics Committees in the Health Care Setting, 12 Fundamental Ethical Principles, 15
The Role of Culture, Race, and Ethnicity in Health Care, 18 Conflicting Obligations and Ethical Dilemmas, 19
Health Care Decisions and Decision Making, 24 Decision-making Capacity, 24 Assessment and Determination of Capacity, 27 Deciding for Patients without Capacity, 30
Evolution of the Doctrine of Informed Consent, 38 Elements of Informed Consent and Refusal, 39
The Nature of Informed Consent, 43 Exceptions to the Consent Requirement, 45
4.Truth Telling: Disclosure and Confidentiality
Justifications, 51
Disclosure, 51
Disclosure of Adverse Outcomes and Medical Error, 56
Confidentiality, 59
5.Special Decision-making Concerns of Minors 67
Decisional Capacity and Minors, 67
Consent for Minors, 71
Confidentiality and Disclosure, 79
Special Problems of the Adolescent Alone, 80
6.End-of-life Issues
Decision Making at the End of Life, 86
Defining Death, 87
Advance Health Care Planning, 89 Goals of Care at the End of Life, 96
Forgoing Life-sustaining Treatment, 99
Protecting Patients from Treatment, 101
Rejection of Recommended Treatment and Requests to ‘‘Do Everything,’’ 102
Medical Futility, 103
7.Palliation
From Caring to Curing and Back Again, 108 The Experience of and Response to Pain, 109 The Moral Imperative to Relieve Pain, 113 Physician-assisted Suicide, 115
8.Justice, Access to Care, and Organizational Ethics 120
Access to Health Care in the United States, 121 A Right to Health Care?, 124
Theories of Justice, 125
Rationing, 126
Health Care Organizational Ethics, 128
kenneth a. berkowitz and nancy neveloff dubler
Three Models of Ethics Consultation, 140
Critical Success Factors for Ethics Consultation Services, 142 Policy, 144
Two Approaches to Clinical Ethics Consultation, 144
10.Sample Clinical Cases154
Advance Directives, 154
Autonomy in Tension with Best Interest, 158
Confidentiality, 162
Decisional Capacity, 165
Disclosure and Truth Telling, 168
End-of-life Care, 172
Forgoing Life-sustaining Treatment, 176
Goals of Care, 177
Informed Consent and Refusal, 181
Medical Futility, 183
Parental Decision Making, 184
Surrogate Decision Making, 186
Keeping the Teeth in ICU Triage192
Anyone who has been paying attention to health care—patient, family member, professional care provider, policy maker, or interested observer—appreciates the profound changes during the past decades. Major advances in scientific knowledge, clinical skill, and technology have been paralleled by significant developments in how health care decisions are made and implemented. Decision making that used to be confined to the patient and family doctor now includes a whole cast of additional players, including consulting clinicians, relatives, health care proxy agents, risk managers, attorneys, judges, ethicists, organizational administrators, insurers, and other interested parties.
Among the most effective and valued resources in the health care decision-making process is you—the institutional ethics committee. As medicine becomes more complex, fiscal and bureaucratic pressures mount, and governmental regulations expand, clinicians and administrators increasingly look to you for analysis and guidance in resolving health care problems. Depending on the size and needs of the institution, the ethics committee typically serves as moral analyst, information clearing house, dispute mediator, educator, policy reviewer, and clinical consultant. The importance and scope of these responsibilities suggest that committees should be familiar and comfortable with bioethical theory and analysis, clinical consultation skills, institutional policies, legal precedents, organizational function, and resource allocation.
At this point, you have every right to say, ‘‘Are you kidding? Our committee is made up of clinicians and administrators who volunteer our time because we are interested in the ethical issues in health care. But it’s all we can do to keep up with what we need to know to meet our clinical and administrative responsibilities. Don’t ask us to take a course in bioethics.’’
Your very legitimate concern is what prompted this book—a handbook, not a textbook—that distills the important information and presents a basic foundation of bioethical theory and its practical application in clinical and organizational settings. Bioethics raises complex questions that require essays rather than short answers, and we have packed a great deal into this volume, including theory, vignettes, discussion questions, and suggested strategies. To make the material more accessible and useful, we have provided illustrative cases and ethical analyses to explain how the principles and
concepts apply to what you do. The book is divided into the following sections, each of which addresses one or more ethics committee functions:
≤ an eight-chapter ethics curriculum, organized according to the issues that ethics committees typically address
≤ an introduction to clinical ethics consultation, including examples of clinical cases raising ethical issues that trigger requests for consultation by an ad hoc group and/or review by the full committee
≤ examples of memoranda, guidelines, and protocols that can be generated and discussed by ethics committees
≤ examples of institutional policies that would be drafted or reviewed by ethics committees
≤ an example of an institutional code of ethics
≤ summaries of key legal cases in bioethics
≤ a transcript demonstrating how an ethics committee would address a difficult issue referred for its consideration
This handbook grew out of the twenty-seven-year history of the Montefiore Medical Center Bioethics Committee and Consultation Service and the frequent requests from other committees to share what we have learned. While the examples are drawn largely from the Montefiore experience, our goal is to provide information and suggestions that can be adapted to the needs of a wide range of committees. In the pages that follow, we talk to the members of both well-established and newly formed ethics committees in large academic medical centers, small community hospitals, nursing homes, and other care-providing agencies. We hope that this resource will stimulate your committee, inform its deliberations, and enhance its contribution to the care delivered in your institution.
■
This handbook owes its existence and utility to numerous individuals and groups, whose invaluable contributions must be acknowledged. Because the book’s inspiration is drawn from our collective experience at Montefiore Medical Center, most of those who were so helpful are part of that remarkable institution.
First and most important is the Montefiore Medical Center Bioethics Committee. Since its establishment in the mid-1980s, this multidisciplinary body has steadily increased the scope of both its membership and agenda, developing a considerable body of knowledge and skill in clinical and organizational ethics. The committee’s eagerness to address new, sometimes controversial issues, its willingness to revisit previous recommendations in light of recent developments, and its determination to be actively involved in education, consultation, and policy review have made it a respected and routinely accessed institutional resource. This handbook reflects the considerable expe-
rience and insights of the Montefiore Bioethics Committee, which we hope your committee will find useful.
The effectiveness of an ethics committee depends in large part on whether it is marginalized or fully integrated into the functioning of the institution. The Montefiore administrative and clinical leadership has historically demonstrated support and respect for the Bioethics Committee, encouraging its robust role throughout the medical center. The collaborative relationship with the offices of the medical director, nursing, social work, legal affairs, and risk management has contributed significantly to the practical application of ethics described in this book. Medical Directors Dr. Brian Currie and Dr. Gary Kalkut, Director of Clinical Affairs Lynn Richmond, and Associate Legal Counsel Mary Scranton deserve special gratitude for their assistance in shaping the manuscript. Drs. David Hoenig, Martin Levy, Grace Minamoto, and Albert Sauberman provided important feedback on draft chapters that were piloted in their resident training programs. Dr. Kalmon D. Post read and reread the manuscript through its numerous incarnations and contributed valuable clinical insights. Maria denBoer provided meticulous manuscript review and editing, and Kim Johnson carefully guided the manuscript through production editing. Our extraordinary editor, Wendy Harris, shepherded the book from first draft to finished product with skill, support, tact, attention to detail, and surpassing patience.
Several people contributed their considerable expertise by writing selected portions of the handbook. Dr. Tia Powell, executive director of the New York State Task Force on Life and the Law, co-authored the introduction on the nature and functioning of ethics committees, which provides the context for the book. Dr. Kenneth Berkowitz, chief, Ethics Consultation Service, Veterans Administration National Center for Ethics in Health Care, co-authored chapter 9, ‘‘Approaches to Ethics Consultation,’’ in part II. Dr. Jack Kilcullen, surgical critical care attending at Washington Hospital Center and former member of the Montefiore Bioethics Committee, wrote ‘‘Allocating Critical Care Resources: Keeping the Teeth in ICU Triage,’’ which appears in part III. Research assistants Dr. Kiyoshi Kinjo, Katharine Michi Ettinger, and Margot Eves were enormously helpful in gathering and organizing material. Several institutions generously shared their policies for comparison in parts IV and VI, including The Cleveland Clinic, Hennepin County Medical Center, Lenox Hill Hospital, Long Island Jewish Medical Center, The Methodist Hospital, Montefiore Medical Center, Mount Sinai Medical Center, Oregon Health and Science University, University of California at San Diego Healthcare, and Wyckoff Heights Medical Center.
Finally, this book would not have been possible without the encouragement, critical commentary, and general forbearance of our families.
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handbook for health care ethics committees
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Introduction: The Nature and Functioning of Ethics Committees
tia powell, m.d., and jeffrey blustein, ph.d.
Ethics committees vary from institution to institution along every significant dimension, including the number and qualifications of members, types of activities performed, the visibility of those activities, and perceived quality and usefulness. Across the country, some committees flourish while others fail to thrive. New committees, as well as those of long duration, can assess and change a variety of factors that may improve their chances of survival and add to their success in supporting the ethical practice of health care at their institutions.
functions
Traditionally, ethics committees have addressed some or all of three functions: education, policy development, and consultation. These functions are discussed in later chapters; here, we focus on the committee’s obligation to define for itself which of these activities it will take on. In each of the three domains, the responsible committee members should clarify their goals and assess how they might attain them more effectively. For instance, if the ethics committee will provide ethics education, the committee should define its goals for education. A discussion aimed at improving educational efforts might focus on questions like the following: Toward whom should education be directed and in what format? Do committee members have sufficient expertise to teach ethics? Can they improve their knowledge base through continuing ethics education? If the hospital is affiliated with a medical school, are ethics committee members involved in teaching students? If not, can those who do teach students join the committee and lend their expertise to other groups within the institution? Are teaching activities geared to the needs of the institution? For instance, have members met with various groups, such as nursing, outpatient clinics, and the Emergency Department to see if they have a troubling case or other specific request for ethics teaching? Is there a set of basic topics in ethics for which the committee can offer instruction? Are there helpful articles and other prepared materials to distribute as part of the educational effort? Do teachers routinely provide evaluation forms so that they can learn which topics and instructors are well received and useful? Similarly, the committee should assess its goals for policy development. If other
groups also handle policy development, the ethics committee might collaborate in some cases or take over development of policies in others, depending on the policy in question. For instance, the ethics committee might serve as consultant to colleagues in palliative care for policies on pain control at the end of life, but might have primary responsibility for revising a policy on do-not-resuscitate orders. The ethics committee should not attempt to duplicate work that is already handled well elsewhere, particularly in the domain of policy development. Rather, designated committee members can reach out to other divisions within the institution so that ethics expertise may be incorporated into policies throughout all hospital departments.
ethics consultations and committees
Clinical ethics consultation is a particularly challenging function and is handled differently at different institutions. In some cases, consultation is handled by a subgroup of the ethics committee, while in other facilities an entirely separate group or individual provides consultation (Fox, 2002). If the ethics committee will take primary responsibility for ethics consultation, it needs to provide requisite training and support for consultants. This book provides a curriculum for such training; consultants may also wish to consider some of the training programs that are now emerging across the country.
membership
The committee should examine whether its membership reflects sufficient diversity to represent the whole institution. While some early ethics committees were constituted entirely of physicians, a committee with such a limited range of members is unlikely to be an effective resource to the entire institution. For instance, a committee composed only of doctors is not best qualified to understand, support, and provide ethics expertise for nurses, social workers, and other health professionals. These distinct health professions adhere to specific codes of ethics and confront dilemmas that can differ from those that physicians face. Thus, allied health professionals will be represented on a welldesigned ethics committee. Some committees, though by no means all, include community representatives as a way of bringing the patient’s voice into the committee’s deliberations. Community members who participate in clinical discussions regarding patient information must offer the same guarantee of confidentiality as health professionals. Ethnic and cultural diversity is also important within the committee membership, because a significant number of consults stem from differences in religious practices and cultural expectations. For example, patients and family members from many cultures fear that full disclosure of a cancer diagnosis will rob patients of all hope (Powell, 2006). An ethics committee member from the same community serves as an educa-
tional resource to colleagues and as a helpful liaison to patients, professionals, and the committee.
As much as an effective committee requires diversity of representation, it also needs stability of membership. A frequently changing membership decreases the ease with which colleagues can identify those with ethics expertise. Moreover, the committee cannot build upon the experience and continued training of its membership if it is constantly changing. Committees with a high rate of turnover (or a significant proportion of no-show members) should view this as a sign of failure to thrive; busy professionals will not devote their time to a group that accomplishes little or whose work is of poor quality. In contrast, committees known for effective and skillful work enjoy a flow of volunteers seeking to join. Poor meeting attendance and a high drop-out rate signal the immediate need for intervention. The committee needs to address frankly every aspect of its functioning, from who chairs meetings and how effectively they are run, to whether the committee’s goals are clear, realistic, useful, and adequately met.
The committee membership should be diverse in terms of whom it represents, but also must include a broad range of skills and knowledge. The American Society for Bioethics and Humanities produced a valuable report in 1998 entitled Core Competencies for Health Care Ethics Consultation, which is required reading for any ethics consultation service. Though specifically geared to the task of ethics consultation, these core competencies are also a useful benchmark for ethics committees that provide education and policy development. The skills and knowledge described need not all be present in the same individual. In fact, a great benefit of the committee structure is that collective expertise can surpass that of any one person. Some of the skills noted in Core Competencies are the abilities to identify and analyze values conflict, facilitate meetings, listen and communicate well, and elicit the moral views of others. Necessary knowledge areas are quite broad and include moral reasoning, bioethics issues, institutional policies, relevant health law, and beliefs and perspectives of staff and patients. Committees that function at a high level monitor their strengths and gaps in expertise and skill, and address those gaps by adding skilled members and/or encouraging continuing education for individual members and the group as a whole. In addition to ongoing educational efforts for members, a committee can also devise an orientation manual and a set of educational expectations for new members. Such a manual might include a list of useful reference works and journals in medical ethics, as well as copies of relevant institutional policies. Mentorship by a senior committee member to whom questions may be addressed, and information about continuing education opportunities would also be valuable. Providing a useful orientation for members new to the committee can be particularly helpful to those committees that have suffered from high turnover or low interest. Sitting through a series of meetings without having a clear role or understanding of the goals can lead new members to drift away instead of staying and contributing to the success of the committee.
Ethics committees perform a unique function within a health care institution by virtue of the fact that they possess expertise in the area of ethics, an expertise that other bodies in the organization generally lack. Doubts may be raised, however, about whether there is such a thing as ethics ‘‘expertise’’ and, hence, whether any individual or group can possess it. The notion of expertise in ethics is not particularly fashionable these days in a culture like ours where relativism, or at least what passes for relativism, is in the ascendance and traditional views of legitimacy and authority are called into question. The notion of expertise in ethics also smacks of elitism, whereas it seems to be a hallmark of our democratic society that everyone is entitled to her own opinion about right and wrong. It is critical, therefore, to characterize accurately the sort of ethics expertise that ethics committees can offer.
As already noted, the expertise at issue here involves several components. Knowledge of general ethical concepts and principles and some understanding of ethical theory are important requirements, but not all committee members need have extensive philosophical training in ethics. Every committee, however, should have among its members an ethicist with at least some formal background in this area who is conversant with the relevant ethics literature and can educate other committee members in the fundamentals of ethics. In addition to familiarity with principles and concepts, committee members should be able to distinguish issues about which there is consensus in the literature from those that are controversial, to think about ethical problems in a critical and analytic fashion, and to be sensitive to and knowledgeable about cultural differences and power asymmetries in clinical practice. Clearly, there is much that committee members have to learn and, for this reason, committee self-education cannot be a one-time effort but must be an ongoing process.
Skills are also important ingredients of the ethics expertise that ethics committees possess, and they too require practice and continual honing. These include the following: the ability to communicate effectively and teach others; the ability to facilitate discussion and mediation of ethical conflicts; and, as a foundation for the rest, skill at discerning the existence and nature of particular ethical problems and dilemmas.
There are widely accepted ethical (to say nothing of legal) principles that limit the options available for solution of ethical problems, and there is a consensus within the medical and ethics literature on particular issues. Even when ethics committees have to work through cases involving patients and families from different cultures, cultural sensitivity, not a relativism of ethical view, seems to be the appropriate response. Finally, there is no basis for the charge of elitism if it is understood that everyone on the committee can make a valuable contribution to the identification, analysis, and resolution of ethical issues.
Committee leadership is of crucial importance in shaping the nature and success of the committee. The tenure of the committee chair should be long enough for both hospital leadership and other colleagues to identify the leader with the ethics committee and its work. Though some committees have adopted a rotating chair, this strategy has the disadvantage of diffusing authority and decreasing visibility. On the other hand, some chairs do not provide effective leadership and an effort to support term limits may be a way to bring new energy to such a committee. The ethics committee chair should be a person respected within the institution, as well as someone with ethics expertise, yet not every facility contains a person who fits this description ideally. Committees whose chair has great institutional credibility but limited formal training should be especially conscientious in continual self-education and efforts to enlist ethics professionals with formal training. A committee whose chair offers formal ethics expertise but limited clinical experience or institutional recognition must build collegial relationships with clinicians. A strong, knowledgeable, and well-respected committee chair is critical to ethics committee survival. The ethics committee chair functions as liaison between the committee and the rest of the institution. When the committee finds that a difficult recommendation is nonetheless the right one, a chair with strong collegial ties to leadership can help present the committee’s views effectively. A committee chair who antagonizes colleagues with judgmental or arrogant pronouncements about what is and is not ethical undermines the work of the committee and may even cause its demise. In contrast, a chair who mediates conflict and addresses ethical tensions effectively and respectfully is an invaluable asset to the committee and the institution.
securing a foothold
The ethics committee should be situated within the overall structure of hospital governance. Whether the committee reports to the medical board or directly to the hospital leadership, a clear reporting structure creates accountability for the ethics committee, as is appropriate for any workgroup in the institution. At the same time, the reporting structure shows the committee where it may turn when it requires additional support. That support may be financial, for example, funding for a lecture series, or it may be political, as when the committee wants to address a controversial topic like questionable billing practices in one hospital division.
An ethics committee will not flourish and may not even survive in a useful way unless it has the support of the institution, from both leadership and staff. Hospitals in which senior leaders are committed to ethics reflect that commitment in large and small ways throughout the institution. On the other hand, if a key leader—for instance,
the chair of a powerful department—doubts the value of ethics endeavors, the institution will follow that lead and ethics activities will be peripheral to the hospital’s mission. New committees and those hoping to improve their efficacy need to examine their level of institutional support. Keeping in mind that hospital directors face extraordinary demands on their time, attention, and financial resources, the ethics committee may wish to consider ways in which support might be increased. Before approaching leadership to ask for support in terms of space, money, or other resources, the committee should define what it offers the institution in exchange for that support. An ethics committee that can show that its current or planned services are important and effective is far more likely to win initial or sustained support than a committee that can define neither its goals nor its accomplishments. The task of clearly defining goals and seeking more effective ways to attain them is a key aspect of earning and deserving support from hospital leadership. Ethics committees that assume that their name alone assures them of support are unlikely to flourish.
Support does not only come from above. A committee may enjoy strong backing from leadership but fail to win the respect of colleagues; such a committee will not thrive. Therefore, in addition to winning the confidence of the institution’s leadership, the committee must gain a broad base of support from staff in different departments and roles. The best way to earn support, of course, is to provide a valuable service. A committee that actively seeks out ways in which it can be helpful and provides useful assistance in addressing ethical problems will enjoy the support of its lucky institution; an ethics committee that sits alone in the boardroom waiting for consults will fail. The delicate balance here is to avoid intruding while providing easy and broad access to ethics expertise. Some ethics committees and consultants make rounds with medical teams as a means of increasing visibility and offering real-time assistance. The benefit of this approach is that it brings ethics into the daily fabric of clinical care, which is where it should be. The liability is that many ethics dilemmas cannot be solved on the spot. Consultants must avoid the urge to please colleagues by providing quick answers that lack depth. For example, consultants who round with medical and surgical teams must have the confidence and experience to note when a situation requires a more lengthy and in-depth resolution process than can be provided during rounds.
In summary, ethics committees that flourish have several elements in common. Their goals are clearly defined, and continual efforts are made to improve the ways in which these goals are met. Membership is professionally and culturally diverse, and includes significant expertise in ethics. The committee seeks to build strong collegial relationships with both leadership and colleagues. Committees that provide effective ethics education, policy development, and consultation support the delivery of excellent health care at their institutions.
references
American Society for Bioethics and Humanities, Task Force on Standards for Bioethics and Humanities. 1998. Core Competencies for Health Care Ethics Consultation: The Report of the American Society of Bioethics and Humanities. Glenview, IL: American Society for Bioethics and Humanities.
Fox E. 2002. Ethics consultations in U.S. hospitals: A national study and its implications. Paper presented at the Annual Meeting of the American Society of Bioethics and Humanities, October 24, 2002, Baltimore, MD.
Powell T. 2006. Culture and communication: Medical disclosure in Japan and the U.S. The American Journal of Bioethics 6(1):18–20.
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Curriculum for Ethics Committees
Part I is an eight-chapter curriculum designed to introduce the fundamentals of bioethics, explain the key concepts, and provide a basic analytic framework for addressing and resolving ethical dilemmas. Each chapter highlights a set of ethical issues that commonly arise in the clinical setting and generate requests for ethics committee attention. It is beyond the scope of this handbook to provide a comprehensive treatment of these topics, and our discussion of the basic ethical principles and concepts draws on the work of expert theorists and practitioners who have contributed to the vast scholarly and clinical literature.
We encourage you to consult the selected but by no means exhaustive references listed at the end of each chapter. Classic texts, such as Beauchamp and Childress’s Principles of Biomedical Ethics, anthologies, such as Arras, Steinbock, and London’s Ethical Issues in Modern Medicine, newsletters, such as Medical Ethics Advisor, as well as journals, such as the Hastings Center Report, the Journal of Law, Medicine & Ethics, The American Journal of Bioethics, and the Journal of Clinical Ethics, should be part of any ethics committee’s library. The American Society for Bioethics and Humanities’ forthcoming publication Improving Competence in Ethics Consultation: A Learner’s Guide will be a valuable resource for individuals and organizations providing clinical ethics consultation and education. Finally, Websites, such as www.asbh.org (American Society for Bioethics and Humanities) and www.ethicsweb.ca/resources/bioethics/institutes.html (a comprehensive list of resources with links to ethics institutes and organizations), are an important source of current information about what is happening in bioethics. These references are essential, providing ready access to the relevant research and in-depth analysis applicable to the cases and issues that committees consider.
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∞ Ethical Foundations of Clinical Practice
The role of ethics in clinical medicine
Ethics committees in the health care setting
Fundamental ethical principles
Respecting patient autonomy
Beneficence
Nonmaleficence
Justice
The role of culture, race, and ethnicity in health care
Conflicting obligations and ethical dilemmas
||| As a member of your hospital’s ethics committee, you have been called by Dr. Thomas, a second-year surgical resident who was paged for the following consult: Ms. Lawrence is a ≤≥-year-old woman who was returning home from her bridal shower when her car skidded on the ice and hit an oncoming truck. Although her multiple injuries are serious, with immediate surgery and replacement of lost blood, her chances of full recovery are excellent.
Ms. Lawrence is in considerable pain, but she appears coherent and her answers to Dr. Thomas’s questions reflect understanding of her condition, the treatment options, and their consequences. Because of her beliefs as a Jehovah’s Witness, however, she will not accept blood or blood products and will not consider surgery unless she is promised that it will be done without transfusions.
Dr. Thomas knows that surgical and hemodynamic intervention can prevent this patient’s almost certain death. He also knows that saving her life in this way will violate Ms. Lawrence’s deeply held religious convictions. What are the conflicting medical, legal, and ethical obligations? What is the role of the ethics committee in resolving this dilemma? What resources are available to help you?
Perhaps the threshold question that should begin our discussion is, What is bioethics and why does it matter? The short answer is that bioethics is the discipline that addresses the ethical issues that arise in the health care setting. As will become clear in the
following pages, however, bioethics does not lend itself to short answers, and further definition is necessary. The concerns of bioethics include the well-being and dignity of the patient; matters of choice and decision making; rights and responsibilities of the patient, family, and care team; access to care; and fairness and justice in health policy. These matters are neither new nor exotic, but they have become more prominent. Health care has traditionally dealt with the profound moral issues of human existence, including life, self-determination, suffering, and mortality. What has changed are the complexity of medicine, the increased range of choices, and the way care is accessed and delivered. The ethical implications of these matters have attracted heightened attention, especially from those who make clinical and policy decisions. As applied ethics has become an integral part of the health care setting, institutional ethics committees have become increasingly visible and active in clinical and organizational decision making. The goal of this handbook is to help your committee be a knowledgeable, skillful, and effective ethics resource for your institution.
the role of ethics in clinical medicine
Ethics has a long and distinguished history grounding both the practice of medicine and the laws related to it. Society considers ethical principles so important that it gives them legal sanction in statutory and case law. Thus, ethical principles, such as respect for autonomy and privacy, are translated into laws about informed consent and confidentiality. It is important to note, however, that issues related to providing and forgoing medical treatment are governed almost exclusively by state law, creating wide variation in the way these matters are handled. For example, decisions about withholding or withdrawing life-sustaining measures might be very different if the patient were being treated in New York or New Jersey. For this reason, your ethics committee should have some familiarity with how your state laws and regulations address these issues.
Ironically, some of the most potentially beneficial developments have generated some of the most difficult ethical problems. In critical, acute, and long-term care settings, the very existence of new therapies often creates demand for their use, whether or not they are medically indicated or ethically appropriate. Clinical research raises issues of information disclosure, comparative levels of risks and benefits, and conflicts of interest. Budgetary pressures constrain the allocation of resources. Standing at the intersection of medicine, ethics, and law, bioethics provides a useful analytic framework for committees charged with helping to resolve these dilemmas.
ethics committees in the health care setting
The development of bioethics as a powerful influence on the way health care is perceived and practiced was part of a larger social transformation. A hallmark of the latter
half of the twentieth century was the heightened notion of individual rights. Virtually every social sphere was affected by the effort to promote equality and redress inequities in race, gender, class, and education. In the context of the various rights movements, the ethical principle of autonomy became the major support for individual empowerment and self-determination in health care, most prominently in the doctrine of informed consent and refusal. In the process, patients became both partners in health care decision making and informed health care consumers.
Ethical, legal, and scientific developments created an obligation to evaluate critically the process of gathering scientific information, translating it into therapeutic applications, and using it responsibly. Advances in medical knowledge and skills generated a new array of treatment options, as well as the concern that the ability to intervene could become the obligation to intervene. For the first time, questions were raised not only about how and when, but whether to treat. Under what circumstances should therapies be withheld or withdrawn? When does the burden of an intervention outweigh its benefit? How should decisions be made about the allocation of limited medical resources? At the same time, the law was becoming involved in life-and-death matters that used to be confined to the doctor-patient interaction.
Bioethics as a discipline is generally considered to have developed between the 1960s and the 1980s as it became apparent that emerging issues could benefit from thoughtful analysis by people with both clinical and nonclinical perspectives. Philosophers, social scientists, theologians, legal scholars, and biomedical scientists increasingly focused their attention on clinical research, allocation of limited resources, transplantation of organs, reproductive technologies, genetic testing and treatment, terminal illness and end-of-life care, and the obligations in the clinical interaction. Of particular relevance to ethics committee background, these deliberations revealed that ethical analysis had practical application in the research and clinical settings.
The hospital ethics committee was an early institutional effort to bring a formal ethical perspective to the clinical setting, otherwise described as ‘‘a politically attractive way for moral controversies to be procedurally accommodated’’ (Moreno, 1995, pp. 93–94). Hospitals began to establish ethics committees during the mid-twentieth century to answer questions and help make decisions about health care issues with ethical dimensions. These committees had their roots in several types of small decisionmaking groups, each intended to address specific ethical problems. Sterilization committees, composed mainly of physicians with expertise in psychiatry and psychology, functioned mainly during the 1920s and 1930s to determine which individuals with mental disabilities should be involuntarily sterilized. Abortion selection committees functioned in many hospitals before the 1973 U.S. Supreme Court decision in Roe v. Wade legalized abortion. Beginning in 1945, their purpose was to evaluate the requests of women who wished to terminate their pregnancies and determine whether therapeutic abortions were indicated to preserve the life or health of the prospective
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tumble-home or fall-inboard was made, so that the width of the upper deck became only about half of the greatest beam.[59] We shall see, too, how in later years this “tumble-home” was greatly exaggerated. As to the effect of the new armament on a ship’s rig, we shall be able to discuss this when we come to the bomb-ketch in Fig. 62.
We have seen how the ships of England have developed into the crescent-shape by now. That, indeed, continued for some time, until the fashion came for bigger and more powerful ships under the Tudor régime. Practically with the end of the fifteenth century we bid farewell to the Viking influence as clearly expressed, although it were perhaps more correct to say that that design was not so much discarded in later years as absorbed: enlarged upon and modified rather than altogether supplanted. The first important addition to the Viking design was that of the fighting castles. From thence it was not a great step to add decks, guns instead of bows and arrows, two masts instead of one, and an increase of beam and subsequently of depth.
CHAPTER VI.
THE DEVELOPMENT OF THE SAILING SHIP FROM THE TIME OF HENRY VII. TO THE DEATH OF QUEEN ELIZABETH (1485-1603).
e enter now upon a period that will always be memorable for the impetus given to maritime matters, and the consequent improvement that took place in sailing ships of all kinds. In the history of the latter there are two centuries that have witnessed the greatest developments in the production of that most beautiful of all things that man ever set himself to fashion out of wood or iron. The first of these eras was the sixteenth century, and the other was the nineteenth. But before we begin to consider the sixteenth, let us briefly sum up all that had been effected by the end of the fifteenth.
We have seen how the early type that prevailed so long in England was that of the Vikings, whilst in the Mediterranean the galley and carack were collateral kinds of craft. Whilst it is true that after the Crusades England did eventually begin to build real ships, yet long before this time out of the ports of Venice, Genoa and Barcelona were sailing big carrying ships of three decks and of several hundred tons burthen. Of enormous freeboard, the carack and caravel were more able to encounter bad weather and to remain in commission both winter and summer. Able, too, to carry considerable quantities of merchandise and large numbers of passengers with a fair chance
of making port in safety, they were from the first destined to become the ideal ship for the trader in preference to the galley. In war-time the galley was more handy because she could be manœuvred quickly with oars. But the carack and caravel, when guns were introduced, instantly exercised an undisputed superiority in another respect, for they could carry larger and more numerous cannon, and had the commanding advantage of height, though they were in comparison with the galleys decidedly cumbrous. Slow in stays, topheavy and decidedly uncomfortable, pitching into every sea, they were far from the ideal. Thus the galley (or its cousin the galleass) remained in existence for fighting, as distinct from merchant service, side by side until after the Armada. An effort was made to reintroduce the galley in the English Navy under Charles II., but though the galley flourished in the Mediterranean until the eighteenth century, it was doomed in England gradually but surely from the beginning of the fourteenth century.
The Viking-like ships of England had gradually undergone important changes. Alfred had tried the experiment of building them of greater displacement, and this increase in size had gone on steadily after the time of William the Conqueror. Moreover, as we have seen, the development of the forecastle and sterncastle had prepared the English sailors for the logical outcome of these—the ship with two or three decks. At first a mere light scaffolding, castellated at the top and capable of being affixed to a merchant ship on the declaration of war, these castles had in the march of time assumed a more permanent character. Instead of being mere supports lashed together, the framework became more solid, and the design of the ship was adapted to suit these structures—the sweep of the hull, as we have seen, coming up to meet the platform, which steadily became lower and lower and projected less forward until both fore- and stern-castle were essential portions of the vessel.
But besides the knowledge that our forefathers had gained through studying the ships in the Mediterranean at the time of the Crusades and after, owing to the large carrying trade, some of the big ships from the three Mediterranean ports just mentioned were in
the habit of coming into English waters with their merchandise of gold, silks and spices. Their stay here would not be too short for our shipwrights to study their build and architecture. Here was a new kind of ship that but few had ever seen. Their cargo capacity and high freeboard, and the fact that they held a crew numerous enough to fight pirates on even terms would instantly appeal to those who had eyes to see. As soon as ever peace at home gave a sufficient encouragement, shipbuilding was bound to go ahead on these larger lines. Henry V., too, had actually in his navy some Genoese ships of this type, and by the middle of the fifteenth century merchant ships of 100 tons were not rare, and some of even 300 tons were in existence, and trading to the Mediterranean, the Baltic and Iceland. The galley was fast disappearing, and instead of the one-masted ship, by the end of the fifteenth century a big vessel of 800 tons with four masts and a bowsprit began to be built.
The evolution of the number of masts was on this wise. When the single mast was multiplied two things happened. In the Mediterranean the additional mast forward of the mainmast had become the mât de misaine (Italian mezzana = foresail), or foremast. In Northern Europe the mast was added aft, but nevertheless called mizzen—still another instance of the confusion that has existed in nautical nomenclature. We know from the illustrations on old manuscripts of this period that vessels possessed as many as three and four masts, and this is further confirmed by the inventories still extant of Henry VII.’s ships. The same evidence proves the introduction by now of topmasts as fixed though separate spars. There is even one instance of a topgallant mast. Instead, therefore, of the old rig consisting of one large sail on the one mast there is—reckoning from forward to the stern—a spritsail on the bowsprit, a squaresail on the fore and main masts with one small topsail on each of these two masts, and a lateen or triangularshaped sail on a yard, but with no boom of course, hoisted up the mizzen-mast. The spritsail was a squaresail on a yard lowered from the end of the bowsprit. If the reader will look at the illustration in Fig. 46 he will see a badly drawn, but none the less interesting,
illustration of a carack of the beginning of the sixteenth century. The ship in the foreground is the Cordelière. Though much of the bow end is not shown, there is sufficient to indicate how the fore- and stern-castles have come down to be part of the hull, and how the latter has been increased in length. The three masts will also be seen, though the bowsprit is not shown. The castellated structures have become large, roomy cabins. Guns will be seen on both the lower and main decks. It was about the end of the fifteenth century, also, that portholes were introduced, and the tiers in forecastle and poop reached as many as three. The guns in the ships of Henry VII. were serpentines, breach-loading, using lead, stone or iron ball. From the tops, picked men still hurled javelins or shot arrows from their bows on to the enemy’s decks below.
When Henry VII. ascended the English throne, the first real effort in the direction of an adequate national navy was made. It was a critical moment. The country’s finances had been drained by the long-drawn out Wars of the Roses, so that her navy had been utterly and grievously neglected. Notwithstanding that under Henry V. it had increased to unprecedented strength—including as it did as many as thirty-eight vessels ranging from 400 to 600 tons—yet on the death of this fifth Henry the thirty odd ships that remained were, disgraceful to relate, sold out of the service, and by 1430 the English Navy comprised only two or three dismantled hulks.[60] It is true that Henry V. had been at great pains to build ships, and Southampton Water and Hamble, the pretty little village on the river of the same name, were in those days as interested in his ships of war as to-day they are in the industry which yachting brings to both of these places. It is true, also, that Edward IV. had at various times during his reign bought some ships, including the Grace àDieuand Mary of the Tower, and the Martin Garsia, and that his successor, Richard III., had added to these three by the purchase of the Governor. These four indeed came into the possession of Henry VII. on his accession, but though the administration in his reign represented an effort rather than a complete reorganisation, yet it marked an important advance. He prepared the way for his
successor Henry VIII., and showed his keen interest in the navy and maritime matters generally. But his especial good deed consisted in the building of two warships which were a considerable advance on any the country had previously possessed. Of these the Regent, of 600 tons, was inspired by French naval architecture. She was built on the Rother about 1490 and carried 225 serpentines. These guns were not of much avail in penetrating the enemy’s sides, but they would be efficacious in destroying his sails and rigging and in sending a sweeping fire over his decks. She had a foremast, foretopmast, mainmast, main-topmast and main topgallant mast, main mizzen and bonaventure mizzen.[61] Both mizzen-masts, having lateen-sails, were without topmasts. From the bowsprit, as already described, there was a spritsail. This, as we saw in Chapter III., had its origin in the Roman ships. I think there can be little doubt but that the spritsail was the lineal descendant of the artemon. It was scarcely very wonderful that it survived so long, seeing that the galleys had remained but little altered since classical times. We must not forget that the rig of the squaresail-ship originated in the Mediterranean, so that the spritsail would come most naturally to the aid of the ship for her head canvas. Similarly the lateen, being everywhere seen on the Mediterranean and Nile— on feluccas and dhows alike—would be found at hand for the after canvas. The preference for a lateen sail for the mizzen was based on the reason that such a sail will hold a better wind—will sail at least a point closer to the breeze. Its position in the stern was to facilitate the steering. The Regent’s topmasts and topgallant mast were separate spars fixed to the lower mast but could not be lowered or raised. The topgallant mast had a sail but no yard. It was not till many years after that the topgallant sails had yards. Mr. Masefield states that the topgallant sail began like a modern moonraker, i.e.a triangular piece of canvas, setting from truck to the yard-arm of the topsail yard immediately below.[62]
The Sovereignwas of a similar type, though smaller. She had two decks in the forecastle, two in the summercastle, and in the topgallant poop. What the summercastle exactly was cannot be
discovered, but Mr. Oppenheim suggests the very probable theory that it was the poop royal. At any rate it commanded an all-round fire and carried many guns. We shall see as we proceed how strong the tendency was in the sixteenth century to raise the poop to enormous heights. The Sovereign had no main topgallant mast as the Regentpossessed. All the armament of both ships was carried in the waist, in the decks of the summercastle and poop, but there was no real gun-deck. With all this top-hamper, there is no wonder that the Santa Maria, Columbus’ ship, pitched so terribly. But in spite of the guns, a considerable part of the fighting was entrusted to the archers. Mr. Oppenheim mentions that the Sovereign had on board 200 bows and 800 sheaves of arrows, and but small quantities of gunpowder and lead.
When the Regentand Sovereignwere launched at the end of the fifteenth century the sensation which they caused can scarcely have been inferior to that in our own times made by the launch of the Dreadnought and Bellerophon. The country had never produced such ships before in size and equipment. But just as it would have been impossible for our builders or designers to have suddenly brought a Dreadnought into being, so in the case of the Sovereign and the Regent what was seen was the result of gradual progress. The fifteenth century shipwrights and architects had step by step been feeling their way to higher achievements, and had the Wars of the Roses never occurred there can be little doubt but that these big ships would have been launched in an earlier reign.
The standards flown by the ships of this period were of white linen cloth, with red crosses of “say” (i.e., woollen cloth). The streamers with which they were wont to decorate their vessels in a somewhat profuse manner were also of linen cloth or “say.” The Regenthad no gilding or carving, except a gilt crown. Nor was any great expense made on the score of paint, for we find a record of the painting of the Regentand another ship called the MaryFortune. The whole job was done by contract for the sum of £2 19s.10d.The davits, both of this period and for many years after, were used not for hoisting the ship’s boats aboard—which was done by means of tackles with poles
and sheaves of brass—but for getting up the anchors. There were both fixed davits and movable ones that could be used in different parts of the ship. Most of the timber came from the New Forest and Bere Forest, not far from Portsmouth. Iron was bought by the ton and worked up at the royal forge into nails and spikes, &c.
In 1497 two smaller men-of-war, named respectively the Sweepstake and the MaryFortune, were built. But these were much smaller than the other two, and carried three lower masts, a main topmast, as well as a spritsail on the bowsprit. The Grace à Dieu, which Henry had inherited on his accession to the throne, was renamed the Harry Grace àDieu. She is said to have cost £14,000, to have had four pole masts, each with a circular top, a bowsprit, a built-up poop and forecastle, as well as two complete and two partial tiers of guns mounted in ports.[63] The late Sir W. Laird Clowes inclined to the belief that the drawing of the Harry Grace àDieu in the Pepysian Library, Cambridge, represents not the ship of the same name built in the reign of Henry VIII., but that of which we are now speaking. By the beginning of Henry VIII.’s reign she had either disappeared or was known under a new name.
It was for a long time the custom of English monarchs in times of peace to let out on hire the royal ships to merchants. Nor did Henry VII. break away from this practice. Apart altogether from the importance which big ships possessed from a naval point of view, it was a profitable speculation to build large vessels. Merchants were glad to hire them, since it saved the necessity of having to build for themselves or of keeping them in commission when their voyages were ended. The larger the tonnage of the ship the more popular were they to the hirers, for the reason that they not only held more cargo and were less likely to succumb to pirates, but that they could voyage to virgin fields where trade could be established. Henry, in addition to the ships he had inherited and built, also hired some himself, both from his subjects and the Spanish. He even went so far as to purchase some vessels from the latter, but Spain eventually
legislated to prevent Spanish-owned ships from being sold to foreign Powers.
We find references in the naval accounts of this reign to caulking with “ocum”; also to the “crane line,” which led from the sprit mast to the forestay, and steadied the former. Among the details preserved to us concerning the Grace à Dieu we find that she had three bonnets for the mainsail, the lacing that secured the bonnet to the foot of the sail (after the manner adopted by the Vikings) being called “latchetes.” There is a considerable similarity between the nautical terms of this period and of our own time. Corks were used for buoying anchors; “deadmen’s eyes” (dead-eyes, as we now call them, through which the lanyards of the shrouds are passed), “painters” (Mr. Oppenheim derives this familiar word from the old French pantiere, meaning a noose); hawse, used in its old sense, to mean the bows of a vessel—hence our modern expression “athwart hawse,” meaning across the bows—these, as well as others, were in daily use among sailormen. We find mention of the fact that the Grace àDieuhad “a shefe (i.e., a sheave or pulley-wheel) of brasse in the bootes halse.” There were not always bulwarks or rails to ships of this age, and sometimes before going into action a cable was coiled round about the deck breast high in the waist, bedding and mattresses being also requisitioned as protection against the enemy’s fire.
As to other details of equipment, we have mention of these ships possessing running glasses, i.e. sand glasses for the use of the log which time has not even now wholly abolished in spite of the patent log on sailing ships. Outriggers, or as they were called, “outliggers,” “bitakles,” (i.e., binnacles), “merlyng irens,” (i.e., marlin spikes) were also in use. By 1514 at any rate, the usual length of a sounding line appears to be forty fathoms. There were winches apparently on the Sovereign, for we find mention of the “wheles for to wynde up the Mayne Sayle.” In order that the large square sails should set as flat as possible, bowlines played an important part during this century and after. In the case of very large sails, the weight on the tack was relieved to some extent by adding luff hooks and chains. As will be remarked in the illustration of the Cordelière, in Fig. 46, pavesses, or wooden shields bearing the devices or coats of arms, were placed along the ship’s waist, and sometimes too, on the forecastle and
FIG. 43. A CARAVEL OF THE END OF THE FIFTEENTH CENTURY.
