Resolving Disputes Over Life-Sustaining Treatment \I

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NCSC HF 38-27 E87 M Y \\Resolving Disputes Over C,3

Life-Sustaining Treatment \I

A Health Care Provider's Guide

Thomas L. Hafemeister ani Paula L. Hannaford

Wth the Greenwall Coordinating Council

National Center for State Courts library National Center for State Courts 300 Newport Ave. WJliamsburg, VA 23 187-8798 0 1996 National Center for State Courts Williamsburg, Virginia Library of Congress Catalog Card Number 96-70341 ISBN 0-89656-167-4 NCSC Publication Number R- 186

Cover design by Judith Ann Sullivan Images 0 1996 PhotoDisc, Inc.

This book was prepared under a grant from the Greenwall Foundation. The points of view expressed are those of the authors and do not necessarily represent the official position or policy of the National Center for State Courts or the Greenwall Foundation, or the opinions of the Greenwall Review Panel members. Comments are welcome and should be sent to the Greenwall Project, National Center for State Courts, 300 Newport Avenue (231851,PO. Box 8798, Williamsburg, VA 23187-8798. Greenwall Coordinating Council

Hon. Stewart G. Pollock, Chair New Jersey Supreme Court Morristown, New Jersey

Hon. Elizabeth B. Lacy, Vice-Chair Virginia Supreme Court Richmond, Virginia

Hon. Robert C. Bibb (ret.) Alexander M. Capron, J.D. Deno, Millikan, Dale & Decker Professor of Law & Medicine Everett, Washington University of Southern California Law Center hsAngeles, California

Ellen B. Comer, Esq. Ronald E. Cranford, M.D. Dilworth, Paxson, Kalish & Kauffman Department of Neurology Philadelphia, Pennsylvania Hennepin County Medical Center Minneapolis, Minnesota

Norman Fost, M.D., M.P.H. Hon. Hilda R. Gage Professor Chief Judge, Michigan Circuit Court Pediatrics & History of Medicine Pontiac, Michigan Director, Program in Medical Ethics University of Wisconsin Medical School Joan McIver Gibson, Ph.D. Madison, Wisconsin Consulting Ethicist Albuquerque, New Mexico

Alan Meisel, J.D. Kathryn Moseley, M.D. Professor of Law and Bioethics Department of Pediatrics School of Law Henry Ford Hospital University of Pittsburgh Detroit, Michigan Pittsburgh, Pennsylvania

John H. Pickering, Esq. Colleen Scanlon, R.N., M.S., J.D. Wilmer, Cutler & Pickering Director Washington, D .C . Center for Ethics & Human Rights American Nurses Association Washington, D.C.

Susan M. Wolf, J.D. Associate Professor of Law & Medicine University of Minnesota School of Law Center for Biomedical Ethics Minneapolis, Minnesota VVilliam §tubing President Greenwall Foundation New York, New York

National Center for State Courts Project Staff mCdOlr E. Phgo, Ph.D. Thomas L. Hafemeister, J.D., Ph.D. Project Director 119951996] Project Director ( 1993-1995)

Pamela M. Casey, PkD. Paula L. Hannaford, J.D., M.P.P. Associate Director, Research Research Analyst

Joshua E Stump Lisa Ghee Research Assistant Project Secretary

jacquenine J. ~ncpven;]P~.D. Hngo Keilitz, Ph.D. Office of Ethics Sherwood Associates Children’s National Medical Center Williamsburg, Virginia Washington, D.C.

Pam Lambert, MA., J.D. Joanne Lynn, M.D. Staff Attorney Center to Improve Care of the Dying Center for Health Law & Ethics George Washington University Institute of Public Law Medical Center University of New Mexico Washington, D.C. Albuquerque, New Mexico

Christine Mitchell, M.S.N. Hon. Francis G. Poitrast Program in Ethics and the Professions Presiding Justice Harvard University Juvenile Court Department Cambridge, Massachusetts Boston, Massachusetts Greenwall Review Panel Members

Frederick R. Abrams, M.D. Hon. Douglas K. Amdahl Denver UniversityKolorado University Chief Justice (ret.] Health Ethics and Policy Consortium Minnesota Supreme Court Denver, Colorado Minneapolis, Minnesota

Hon. Joseph F. Baca David Bennahum, M.D. Chief Justice UNM Health Sciences Center Supreme Court of New Mexico Albuquerque, New Mexico Santa Fe, New Mexico

Robin Borges, R.N. Richard Bourne, J.D., Ph.D. First American Home Care Office of General Counsel Hampton, Virginia Children’s Hospital Boston, Massachusetts

Leslie Bricker, M.D. Andrew Broder, Esq. Henry Ford Hospital Vlcko, Lane, Payne & Broder Detroit, Michigan Bingham Farms, Michigan

Dennis Brodeur, Ph.D. Frederick W. Brown, Jr. SSM Health Care System Ethics Consultant St. Louis, Missouri Northampton, Massachusetts

Susan Fox Buchanan, Esq. Elizabeth L. Buff Colorado Collective for Medical Far Hills, New Jersey Decisions and Consortium on Health Ethics and Policy Alexa Canady, M.D. Denver University and Chief of Neurosurgery University of Colorado Children’s Hospital of Michigan Denver, Colorado Detroit, Michigan

Arthur L. Caplan, Ph.D. Eileen Chichin, D.S.W., R.N. University of Pennsylvania Center on Ethics in Geriatrics and Medical Center Longterm Care Philadelphia, Pennsylvania New York, New York

Phyllis Chinlund, C.S.W. Myra Christopher Geriatric Outreach Program President The Jewish Home & Hospital Midwest Bioethics Center for the Aged Kansas City, Missouri New York, New York

Ellen Wright Clayton, M.D., J.D. Nancy Coleman Vanderbilt University Commission on Legal Nashville, Tennessee Problems of the Elderly American Bar Association Washington, D.C. Sheila Contneetn, M.S.N., A.N.B. Nelia Davis, R.N., M.S.N. Program Director Clinical Nurse Specialist, Gerontology Hospital Based Home Care Sentara-LeighHospital VA Medical Center Norfolk, Virginia Albuquerque, New Mexico

Kenneth De Ville, Ph.D., J.D. Martin E. Doerfler, M.D. School of Medicine Director of Critical Care Medicine East Carolina University N.Y.U. Medical Center Greenville, North Carolina New York, New York

Terry Donnelr, B.S.N., J.D. Nancy N. Dubler, LL.B. Health Care Law & Risk Managemc:nt Director of the Division of Bioethics Consultant Montefiore Medical Center Adjunct Faculty, Ursuline College Bronx, New York Cleveland, Oh0

Horn. Christine M. Durham Linda Emanuel, M.D., Ph.D. Utah Supreme Court Assistant Director Salt Lake City, Utah Division of Medical Ethics Harvard Medical School Ezekiel EmanmeB, M.D., Ph.D. Boston, Massachusetts Brookline, Massachusetts

Rick Elrickson Hon. Ralph Erickstad Director of Pastoral Services Chief Justice (ret.] St. Mary’s Health Center North Dakota Supreme Court St. Louis, Missouri Bismark, North Dakota

6. Douglas Perghlscpn, Esq. JosephJ. Fins, M.D. Anderson & Hunter The Hastings Center Everett, Washington Briarcliff Manor, New York

Joseph Fischofd, M.D. John C. Fletcher, Ph.D. Chair, Ethcs Committee The Center for Biomedical Ethics Children’s Hospital of Michigan Charlottesville, Virginia Detroit, Michigan

Keith Ghezzi, M.D. John Glasson, M.D. George Washington University Council on Ethical and Judicial Affairs Medical Center American Medical Association Washington, D.C. Durham, North Carolina

Hon. David Gdfitlin Amy Haddad, R.N., Ph.D. Magistrate, Probate Court Center for Health Policy and Ethics Colorado Springs, Colorado Creighton University Omaha, Nebraska Eunice Halverson James M. Hoefler, Ph.D. Director, Risk Management Associate Professor, Political Science, St. Mary’s Health Center and Coordinator of the Policy St. Louis, Missouri Studies Program Dickmson College Carlisle, Pennsylvania

Diane E. Hoffmann, Esq. Fr. Jim Huth Assistant Professor of Law St. Joseph Healthcare System University of Maryland Albuquerque, New Mexico Baltimore, Maryland

Sandra H. Johnson, Esq. Mary Gardiner Jones Center for Health Law Studies President St. Louis University Consumer Interest Research Institute School of Law Washington, D.C. St. Louis, Missouri

Rev. Gail Joralemon Kathryn Kaminsky President Clinical Nurse Specialist New Mexico Health Decisions Psychiatry Consult Service Albuquerque, New Mexico University Hospitd Albuquerque, New Mexico

Barbara S. Kellman, Esq. Wai LaMora, M.S.S. General Counsel First American Home Care New England Deaconess Hospital Newport News, Virginia Boston, Massachusetts

Lauren Laughlin, Esq. Craig Lawson, Esq. staff Counsel, Probate Court College of Law St. Petersburg, Florida University of Nebraska Lincoln, Nebraska

Steven A. Levenson, M.D. Charles Lewis, M.D. Director, Medical Services San Diego Hospice Asbury Methodist Village San Diego, California ‘ Gaithersburg, Maryland

John J..Lombard, Jr., Esq. Susan R. Martyq, Esq. Morgan, Lewis & Bochus College of Law Philadelphia, Pennsylvania University of Toledo Toledo, Oh10

Barbara Mathis, Esq. Nancy Maxwell, Esq. Medical Staff Affairs O’Brien, Tanski, Tanzer, &Young UNM Health Sciences Center Hartford, Connecticut Albuquerque, New Mexico Phyanis McNanngBnten, M.S.W. Helene Meyers, M.P.A. Discharge Planning & Counseling Senior Vice President/COO/ Memorial Hospital Administrator Colorado Springs, Colorado The Jewish Home & Hospital for the Aged New York, New York

Vncki Michd, M.A., J.D. Steven Miles, M.D. Los Angeles, California Center for Biomedical Ethics Minneapolis, Minnesota

Dormand IMnnnphx M.D. Bunny Nedry, R.N. Presbyterian-St. Luke’s Hospital/ San Diego Hospice Senior Center San Diego, California Denver, Colorado

Won. Linda K Nenmana Sherwin B. Nuland, M.D. Iowa Supreme Court Clinical Professor of Surgery Davenport, Iowa Yale School of Medicine New Haven, Connecticut

E&ln OISQn,M.D. David Qrentlicher, M.D., J.D. The Jewish Home & Hospital Associate Professor of Law and Adjunct for the Aged Associate Professor of Medicine New York, New York Indiana University Indianapolis, Indiana

Rev. Doug Overall John Barker, M.D. Pastoral Care Eastern Virginia Medical School Denver General Hospital Norfolk, Virginia Denver, Colorado

Polly Wrsonms, M.D. John POpOVkh, IV%.D. Pulmonology-Department of Medicine Pulmonary & Critical Care Medicine Denver General Hospital Henry Ford Hospital Denver, Colorado Detroit, Michigan

Rwth B. hrtib, Ph.D., ET. Susie Ransom, S.W. Director, Creighton University Center Integrated Health Services at Pikes Peak for Health Policy and Ethics Colorado Springs, Colorado Omaha, Nebraska

Frank Reardonm, Esq. Cindy Hylton Rushton, D.N.S.C., R.N. Hassan & Reardon, PC. Johns Hopluns Children’s Center and Boston, Massachusetts University Baltimore, Maryland

Charles Sabatino, Esq. Jeff Smith Assistant Director Vencor Hospital Commission on Legal Problems San Diego, California of the Elderly American Bar Association Washington, D.C. Sr. Maureen Stocking Sr. Carol Taylor, R.N., MAN. Chaplain, Oncology/Hospice Holy Family College St. Mary’s Health Center Philadelphia, Pennsylvania St. Louis, Missouri

Stephen Telatnik, M.D. Daniel Teres, M.D., F.C.C.M. Pulmonary Associates, P.C. Director, Adult Critical Care Division Colorado Springs, Colorado Associate Professor of Medicine and Surgery Rev. Hans 0. Tiefel Tufts University School of Medicine Chair, Religion Department Bay State Medical Center The College of William & Mary Springfield, Massachusetts Williamsburg, Virginia

Robert IIkuog, M.D. James Tubbs, Ph.D. Chddren’s Hospital University of Detroit Mercy Boston, Massachusetts Detroit, Michigan

Maryvon Zittwitz, R.N., B.S.N., Robert J. Wagener, M.A., M.Div. C.R.N.H. President, Center for Medical Ethics & Hospice Manager Mediation Henry Ford Hospice San Diego, California Detroit, Michgan

Thomas E. Wallace, M.D., J.D., Melissa A. Warfield, M.D. F.A.C.P., F.C.C.P. President, Bioethics Network of Division of Pulmonary & Southeastern Virginia Critical Care Medicine Norfolk, Virginia University of Tennessee Memphis, Tennessee

Suzanne M. Weiss, J.D. Hon. Michael D. Wellington Policy Counsel Superior Court, San Diego County American Association of Homes & San Diego, California Services for the Aging Washmgton, D .C .

Maureen Westfall, R.N., B.S.N. Erica F. Wood, Esq. Living Centers of America Commission on Legal Problems Colorado Springs, Colorado of the Elderly American Bar Association Washington, D.C.

Rev. Harry Yeide, Ph.D. Stuart J. Youngner, M.D. George Washington University University Hospitals of Cleveland Washington, D.C. Case Western Reserve University Cleveland, Ohio .c Table of Contents xi

Acknowledgments xv Message from the Chair of the Greenwall Coordinating Council xvii Introduction 1 Chapter 1 Overview of the Decision-MakingProcess 9 Principles of Decision Malung 12 Patient Decision Malung 13 Surrogate Decision Malung 15 Who Should Be the Surrogate? 16 Which Decision and Why? 17 Applying the Principles of Decision Malung 20 Chapter 2 Sources of Disagreements 21 Chapter 3 Preventing and Resolving Disagreements 27 Effective Communication 28 Managing the Environment 50 Roles of the Participants 53 Complicating Issues 60 Chapter 4 The Roles and Responsibilities of Ethics Committees and Consultants 7 1 Responsibilities of the Health Care Organization 74 Responsibilities of the Ethics Committee or Consultant 89 Chapter 5 Judicial Involvement in Disputes 10 1 The Proper Role of the Courts in the Decision-MakingProcess 10 1 The Proper Role of Health Care Providers During Litigation 107 Appendix A Glossary 119 Appendix B Examples of State-Mandated Models for Resolving Disagreements 125 Appendix C Bibliography 13I Index 145 xii Resolving Disputes Over Lifesustaining Treatment

1. Early Discussions 28 2. Patient-Centered Focus 30 3. Decision Making by Patients Who Are Minors 33 4. Establishing Trust 36 5. Encouraging Questions 37 6. Individualized Discussions 39 7. Pace of Decision Malung 40 8. Addressing Expectations 42 9. Full and Frank Information 43 10. hring Disagreements 44 11. Impact of Diversity 45 12. Generating Agreement 48 13. Patient’s Environment 50 14. Location of Discussions 5 1 15. Unnecessary Transfers 52 16. Level of Interactions 53 17. Involvement of Family Members 55 18. Collaborative Team Approach 58 19. Ethical and Legal Limits on Decision Malung 60 20. Management of Pain and Suffering 61 2 1. Medically Futile Treatment 64 22. Costs and Resource Allocation 67 23. Groups or Individuals to Resolve Disagreements 74 24. Evaluating Disagreements 76 25. Resources and Accountability 77 26. Education of the Health Care Organization 78 27. Accessing the Ethics Committee or Consultant 79 28. Developing Policies and Procedures 80 29. Patient Participation in Meetings 8 1 30. Family Participation in Meetings 85 3 1. Staff Participation in Meetings 86 32. Patient Representative 87 33. Obtaining Information 8 8 34. Privacy and Confidentiality 89 35. Maintaining Records 90 Guidelines xiii

36. Communicating the Outcome 92 37. Independence 93 38. Conflicts of Interest 94 39. Sensitivity to Diversity 96 40. Sensitivity to Imbalances in Power 96 4 1. Self-Education 98 42. Relationships with the Patient and Family During Litigation 108 43. Role of Health Care Organization’s Legal Counsel During Litigation 111 44. Understanding Judicial Procedures and Judicial Decision Making 114

Acknowledgments xv

Over four years ago, the National Center for State Courts undertook the “Greenwall Project” to examine life-sustaining medical treatment decisions in health care organizations. During this period, literally hundreds of people contributed their time, energy, expertise, and support to this project and, by extension, to the production of this book. We wish to acknowledge those individuals whose participation in the project has been particularly beneficial. Pamela Lambert, the project consultant, conducted interviews at the project sites and staffed the Greenwall Coordinating Council meetings. Wendy Parker provided invaluable access to medical and bioethical literature. Joshua Stump reviewed the literature that accumulated during the course of the project and compiled it for the bibliography. Gene Flango, Pam Casey, and Ingo Keilitz provided crucial leadership and moral support. Hillery Efkeman, Margaret Fonner, Lisa Ghee, Pam Petralus, and Deb Schutte all provided administrative support on various occasions throughout the project. Judith Ann Sullivan patiently listened to our hopes and aspirations about the manuscript and trans- lated them into an appropriate cover design. Dawn Spinozza applied her exacting editing skills to the manuscript to correct our otherwise inconsistent use of grammar and style. Joe Kueser did a painstahng job of designing and typesetting the document. William Stubing, president of the Greenwall Foundation, provided financial support, without which this project would never have begun. The Review Panel members provided invaluable commentary on an earlier draft of the book. Last, but most important, the members of the Greenwall Coordinating Council donated countless hours, including several long weekends away from families and friends, to share their collective wisdom about life-sustaining medical treatment decisions. xvi &solving Disputes over Lifesustaining Treatment

We offer our heartfelt gratitude to all of these individuals. Without their contributions, this project would have been far more difficult- if, indeed, it would have been finished at all.

Thomas L. Hafemeister, J.D., Ph.D. Paula L. Hannaford, J.D., M.P.P. Message from the Chair xvii

In 1989, the National Center for State Courts (NCSC)published guidelines to assist state trial judges in resolving cases involving life- sustaining medical treatment. Thereafter, the NCSC concluded it would be in the public interest and that of state courts to study how health care organizations could reach decisions in such cases without judicial involvement. The Greenwall Foundation generously agreed to fund the study. Initially, NCSC research staff visited a variety of health care organizations across the country. Then, the NCSC invited experts from various disciplines to serve on a coordinating council to make recommendations on preventing and resolving disputes concerning life-sustaining medical treatment. The project has been frustrating, challenging, and rewarding. Frus- trating because the underlymg considerations kept changing. While project staff and the coordinating council considered guidelines for health care organizations, a proposed national solution to health care has come and gone, the health care system has continued to evolve, and courts have confronted new problems, such as those involving physician-assisted suicide. In brief, the facts changed while we worked. The council, nonetheless, steadfastly sought to develop principles and a process that would remain valid in the face of change. The project has been challenging because of the rich diversity of expertise of the council members, a diversity that led to conflicting opinions on many issues. Notwithstanding that diversity, council members remained united in their commitment to reaching a consensus. Sometimes the price of consensus was acceptance of a council position with which individual members disagreed. Yet, from meeting to meeting, members continued to express their views, negotiate compromises, and proceed. Ultimately, the council agreed on the vast majority of recommendations. xviii ResoMmg Disputes Over Life-Sustaining Tkeatment

The reward is in producing guidelines that may be useful to people in health care organizations who make life-sustaining medical treatment decisions: doctors, nurses, ethicists, and lawyers, as well as administrators in hospitals, nursing homes, hospices, and others. If these guidelines help health care organizations, their patients, and their patients’ families reach reasoned and compassionate decisions, the effort will be more than rewarding.

Stewart G. Pollock Justice, New Jersey Supreme Court Introduction 1

Karen Ann Quinlan . . . Joseph Saikewicz . . . Paul Brophy . . . Nancy Cruzan . . .

For the past thirty years, controversy has surrounded court cases involving life-sustaining medical treatment decisions. These landmark court cases recognized the right to refuse unwanted life-sustaining medical treatment. Equally important, these cases articulated a process that patients, their loved ones, and their health care providers should use to decide whether to continue or discontinue treatment. Over time, courts have recognized repeatedly that health care providers do not risk criminal or civil liability for respecting patients’ treatment preferences.’ In fact, recent cases have imposed liability when providers intentionally failed to comply with patient’s wishes.2 In the midst of the publicity given these cases, however, two important facts about decision malung are often overlooked. First, the decision to forgo life-sustaining medical treatment is made tens of

In re Qdan,355 A.2d 647 11976);Barber v. Superior Court, 147 Cal. App. 3d 1006,195 Cal. Rptr. 484 (1983);Rodriguez v. fifio, 634 So. 2d 681 (Fla. App. 3d Dist. 1994). Osgood v. Genesys Regional Medical Center, No. 94-26731 [Genesee Cty. Cir. Ct. Feb. 16, 1996) (jury verdict awarding $16 million in a medical battery case against a hospital that continued treatment for a 38-year-old woman despite objections by her family that she would not want it);Andersonv. St. Francis-St. George Hosp., 614 N.E. 2d 841 (Ohio Ct. App. 1992) (holding that there is a cause of action for the administration of unwanted life-sustaining medical treatment).In addition, at least one state (Alaska) has incorporated penalty provisions for providers’ wilhl failure to comply with advance directives. Alaska Stat. § 18.12.070 (1995). 2 Resoking Disputes Over Life-Sustaining ’Hkeatment thousands of times each year without the assistance of the courts. In the vast majority of cases, the individuals directly affected by the decision-patients, family members, and health care providers-agree on the decision. They have no qualms about the appropriateness of the decision or their authority to make it. The good faith of the decision makers is unquestioned. Under these circumstances, judicial involvement is superfluous and unwarranted. Moreover, it intrudes on the legitimate roles of the patient, the patient’s family members, and the patient’s health care providers. Second, little disagreement remains among health care and legal professionals over the underlying principles guiding decisions about life-sustaining medical treatment. Despite minor differences in terminology, state statutes, court decisions, and codes of biomedical ethics reflect a fundamental respect for patients’ rights of autonomy and informed consent. Recognition of the primacy of patient preferences is not the only emerging area of consensus. Also receiving increased recognition is the authority of family members, friends, or other surrogates to act on behalf of patients who lack decision-malung capacity. Despite widespread agreement on the principles that should govern decisions about life-sustaining medical treatment, disputes about forgoing treatment continue to erupt within health care organizations. Indeed, two decades of work and a sizable literature on this topic have generated more consistent agreement in theory than in real clinical cases. With the intent of harmonizing theory and practice, this book takes a different approach. It describes how health care organizations can prevent and manage disputes and explains the circumstances under which they should take these disputes to court. These disputes do not occur simply because of a failure to understand the prevailing principles. Rather, they reflect the genuine complexity of actual cases, the real worlungs of complicated organizations, and the true challenges of bringing agreed principles to bear on cases. This book reflects the efforts of individuals from diverse disciplines-including physicians, nurses, attorneys, judges, and bioethicists-to offer practical guidance to health care providers about how to manage the process of malung decisions about life-sustaining medical treatment. By promoting respect for patients’ rights and sensitivity to the emotional needs of patients’ families and friends, health care providers may prevent many disputes involving these decisions. Consul- Introduction 3 tation with health care experts who are specially trained in these matters may resolve many disputes without judicial assistance. Finally, clarification of the circumstances that warrant judicial assistance may help health care providers better understand the appropriate roles of law and the courts in the decision-malung process.

Background for This Book In 1989, the National Center for State Courts (NCSC)responded to a request by the Conference of Chief Justices to assist state trial court judges presiding over life-sustaining medical treatment cases. With the guidance of a Coordinating Council and with financial support from the State Justice Institute, the NCSC published the Guidelines for State Court Decision Malung in Life-Sustaining Medi- cal Treatment Cases (West, 1993).Trial and appellate court judges, as well as health care providers, have strongly endorsed these guidelines, articulating that the courts should not be routinely involved in these decisions. Nevertheless, a critical question remains unresolved: How can these decisions be better managed to avoid unnecessary or inappropriate involvement by the courts in the decision-malung process Z To find the answer, the NCSC, with financial support from the Greenwall Foundation, undertook a three-year project to examine decision malung in life-sustaining medical treatment cases within health care organizations. As part of this examination, project staff also at- tempted to identify the factors that encourage dispute resolution without judicial assistance. Staff visited over twenty health care organizations across the country, including acute-care and trauma centers, long-term care facilities, and hospice and home-care organizations. Staff also consulted a variety of organizations with different perspectives-private and public, profit and nonprofit, urban and ru- ral, religious and nonsectarian, and academic and managed care organizations-to obtain as broad a view of decision malung in health care settings as possible. The individuals interviewed represented the spectrum of people involved in decision malung in life-sustaining medical treatment cases. Nearly 300 individuals-physicians from a variety of medical specialties, nursing staff, clinical social workers, psychologists and psychia- 4 Resolving Disputes Over Life-Sustaining Treatment

trists, pastoral care staff, health care administrators, legal counsel, risk managers, and ethics committee members-shared their time, their expertise, their thoughts, and their practical ideas for avoiding and resolving these disputes. Likewise, patients and family members provided project staff with their insights. Finally, project staff interviewed independent professionals involved in patients’ rights, guardianship, and surrogate decision-malung issues. Many of the guidelines here were first suggested by these individuals with first-hand experience in life-sustaining medical treatment decisions.

at This Book Is This book targets individuals associated with the delivery of health care services. It is a collaborative effort by project staff and the Greenwall Coordinating Council, a fifteen-memberbody consisting of physicians, nurses, bioethicists, judges, legal scholars, and other professionals. In a series of meetings with project staff, the Council reached a consensus about principles of decision making and recommendations for preventing and resolving disputes over life-sustaining medical treatment. Written comments and recommendations from a Review Panel, which consisted of more than 100 experts from a number of relevant disciplines, guided the Council and project staff in their discussions. In formulating the guidelines set forth in this book, the Council and project staff reiterate their belief that patients, along with their families, friends, and health care providers acting in good faith, can and do make appropriate decisions about life-sustaining medical treatment without judicial involvement. This book begins by describing a basic analytical framework of which health care providers should be aware when participating in the decision-malung process. Chapter 1 addresses principles widely recognized by legal, health care, and bioethcs professionals as fundamental to decisions about life-sustaining medical treatment. Chapter 2 dis- cusses the types of disputes that can arise and the individuals who are likely to participate in their resolution. The remaining three chapters describe the types of professional expertise and organizational resources that are often useful for guiding the decision-malungprocess and for resolving disagreements. Chapter 3 examines decision malung at the bedside with particular attention Introduction 5

to the prevention and early resolution of disagreements. The phrase “at the bedside” does not refer to a specific location. Rather, it is a colloquialism that refers to patient care issues that usually are addressed informally by the patient or the patient’s surrogate, the patient’s immediate health care team, and the patient’s closest family members and friends. Chapters 4 and 5, in contrast, focus on more formal approaches to disagreements. Chapter 4 identifies resources that health care providers may use to resolve disputes. These resources may exist either within the health care organization itself or in the community. Included among these resources are individuals with specific expertise in life-sustaining medical treatment decisions, including ethics committee members, supervisory and administration personnel, and risk managers and legal counsel. Chapter 5 describes circumstances in which judicial assistance is appropriate to resolve disputes and offers suggestions for alleviating tension during litigation. Also included as appendices are a glossary of terms, a description of existing models for resolving disputes over life-sustaining medical treatment, and a bibliography of relevant literature. Despite this targeted approach, the authors have tried to provide information helpful for all readers. In addition, readers should note that the informal and formal approaches to decision mahng and dispute resolution are not mutually exclusive. To the greatest extent possible, the patient’s health care team should continue to follow the guidelines in Chapter 3, even when a dispute requires a more formal method of dispute resolution, including judicial assistance. The authors recognize that an increasing range of health care facilities and organizations confront these decisions. Until recently, the literature examining these issues focused primarily on acute-care fa- ’ cilities. Changes in health care delivery, financing, and patient atti- ’ tudes, however, require long-term care facilities, hospice care, and home health care organizations to familiarize themselves with these issues. As health care delivery evolves, health care providers need to adapt these recommendations to fit these new settings. Hence, the term health care organization and the guidelines articulated here apply to all types of health care settings. Health care organizations also vary greatly both in their resources and in the familiarity of their staff with the decision-makmg process. 6 Resolving Disputes Over Life-Sustaining flreatment

As a result, different types of health care organizations may find different uses for this book. In addition, health care facilities, organizations, and individual providers will not always have immediate access to the same resources. Nonetheless, the authors remain confident that health care providers can locate or develop appropriate ways to resolve disputes over life-sustaining medical treatment. For example, long-term care facilities without their own ethics committees may find that ethics committee members from a nearby hospital will be willing to assist in resolving disputes. Individuals in the community, such as clergy or educators, also may have useful knowledge and expertise. The fact that these resources are not affiliated with the health care organization or are available only on an ad hoc basis does not render them any less helpful. The guidelines in this book may not apply to every decision involving life-sustaining medical treatment. Decision malung takes place in a variety of locations and involves a diverse range of personalities, beliefs, and social and cultural variables. Moreover, managed care and other changes in health care delivery continue to expand the range of settings in which decision mahng occurs, the range of people who participate in those decisions, and the nature of the issues that arise in the decision-malungprocess. Because of the diverse circumstances surrounding decisions about life-sustaining medical treatment, specific recommendations that are germane in some situations may be less so in others. Nevertheless, creative adaptations of the guidelines may be successful. In the spirit of these guidelines, providers should be creative in their efforts to respect patients’ rights and to meet patients’ health care needs.

How to Use This Book This book covers a great deal of territory. As a result, it has many potential uses. As an educational tool, it provides an overview of the myriad of issues associated with life-sustaining medical treatment. Ref- erences within the text as well as the bibliography will direct health care providers to further reading. In addition to in-service training for health care providers, this information may be useful for community education. Introduction 7

The guidelines in this book also provide a quick reference for health care providers facing a disagreement over life-sustaining medical treatment. They offer concrete ideas for preventing disagreements, for im- proving communication and resolving disputes among patients, family members, and health care providers, and-in those rare occasions that judicial involvement is, necessary-for easing the tension associated with litigation. Health care providers may also find the guidelines useful for developing institutional policies and procedures within health care organizations. The guidelines make specific recommendations about policies and procedures for ethics committees, consultants, and other groups or individuals that address life-sustaining medical treatment issues. However, the information provided within the guidelines may also be helpful for clarifying other substantive issues-such as Do Not Resus- citate (DNR)orders, futility, and unbefriended patients. They may even provide a helpful framework for considering broader institutional and societal policies.

What This Book Is Not This book does not offer legal guidance to health care providers. Its guidelines are not a substitute for state statutes or judicial rule. The recommendations do not provide legal immunity for the actions of health care providers. The authors strongly recommend that health care providers become familiar with the legal requirements governing decision malung in their locale. General knowledge about the range of issues that may require judicial review and the way in which courts have addressed these issues may also help health care providers distinguish legal ramifications of decision making from other related issues. This book addresses only the issues that accompany disputes over life-sustaining medical treatment. It does not tale a position on other related issues, such as physician-assisted suicide or active euthanasia. Nor is this book an exhaustive treatment of the literature on life- sustaining medical treatment decisions. The bibliography in Appen- dix C may be helpful for individuals who wish to pursue a more in-depth examination of the philosophical, legal, ethical, and empirical issues implicated by these decisions.

Overview of the Decision-Making Process 9

e Overview of the Decision-Making Process

Much of contemporary medical technology is designed to preseme life. For many years, many health care providers applied this technology without recognizing its broader effect on the patient’s well-being. Initially, principles of law, medicine, and biomedical ethics even sup- ported this application of emerging medical technology. Increasingly, however, patients and their families and friends began to question it, particularly for cases in which continuing treatment did not significantly improve the patient’s prognosis or provide an acceptable quality of life. The case of Karen Ann Quinlan ( 1976), the first major “right-to- die” case considered by the courts, riveted the attention of health care providers, bioethicists, the legal community, and the public. It forced practitioners in law, health care, and biomedical ethics to reconsider the principles and process of decision making for life-sustaining medical treatment. Subsequently, a series of state court opinions from across the country sustained this reexamination. The case of Cruzan v. Di- rector, M7ssouri Department of Health (1990)was the U.S. Supreme Court’s first foray into this area. The use of advance directives by former President Richard M. Nixon and Jacqueline Kennedy Onassis has kept these principles and this decision-malung process in the public eye. As a general rule, the legal, health care, and bioethical professions have accepted the proposition that decisions about life-sustainingmedical treatment are private determinations best left to the patient in consultation with his or her family, friends, and health care providers. Resort to the courts is appropriate only when irreconcilable differences exist among those individuals. The decision-malung process in life-sustaining medical treatment cases varies somewhat from state to state and continues to evolve. As no RescPMng Disputes Over Life-SustainingTreatment the Supreme Court observed in Cruzan, states recognize that patients with decision-making capacity have the right to refuse life-sustaining medical treatment. At one time, however, patients could not be sure that their treatment wishes would be honored if they lost decision- making capacity. Now, however, all states recognize advance directives (e.g., living wills and durable health care powers of attorney] that permit patients to articulate binding treatment choices or to designate a health care surrogate should their medical condition later prevent them from directly expressing their choice of treatment.3 When a patient lacks decision-making capacity and has not executed an advance directive, a family member usually serves as a surrogate decision maker. Some states specifically authorize this practice through “family consent” or “surrogate decision-mahng” statutes. These statutes authorize individuals, according to a prescribed hierarchy, to make decisions about life-sustaining medical treatment for incapacitated patients without formal court approval. In other states, family members exercise surrogate decision-making authority without express statutory authorization. Notwithstanding the absence of statutory authorization, both judicial decisions and commentary by legal and health care practitioners tend to encourage this practice. In spite of the growing acceptance of “family consent” approaches to decision malung, family members are not always the most appropriate surrogates for incapacitated patients. In some cases, family members cannot be located or are unwilling to serve. Sometimes, the patient is estranged from family members. In other cases, the patient has particularly close ties with friends, malung them more likely to know the patient’s treatment wishes. The authority of close friends to make decisions on behalf of incapacitated patients when the patient has no family varies from state to state. In some states, legislation expressly permits close friends to act as surrogateswithout judicial appointment. In other states, neither the legislature nor the courts have addressed

Variations in state law exist in the circumstances and medical procedures to which advance directives apply. The federal Patient Self-Determination Act requires providers to inform patients of their rlghts under respective state law. 42 U.S.C. 1395cc(f)(1) (1993 and Supp. 1996). Overview of the Decision-Making Process 11 this issue directly. As a practical matter, however, many health care organizations rely on a patient’s close friends to make these decisions when family members are unavailable, unwilling, or inappropriate choices as surrogate^.^ The question of who can or should make health care decisions for an “unbefriendedpatient” raises considerably more ~ncertainty.~State law is very unsettled and varies tremendously from state to state. In many cases, health care organizations are likely to ask the court to appoint a guardian or other surrogate or to authorize a decision to forgo life-sustaining medical treatment. A few states confer express authority on providers to make decisions on behalf of unbefriended patients without judicial involvement.6 Regardless of the surrogate’s identity, health care organizations should help surrogates reach reasoned, good-faith decisions. Under- standing the relevant legal, medical, and ethical principles is critical when malung decisions about life-sustaining medical treatment. Ap- propriate decision malung tends to reduce the likelihood of subsequent disagreements about or challenges to the decision. It also greatly reduces the guilt and anxiety of family, friends, and health care staff. Likewise, establishing procedures within the health care organization to ensure proper consideration of these principles and other relevant information may avoid conflict and promote the patient’s wishes and interests.

Alan Meisel, chap. 14 in The Right to Die, 2d ed., vol. 2 (New York Wiley Law, 1995). Increasingly, health care organizations use the term unbefnended patient to refer to a patient without decision-making capacity who does not have family members or friends available or willing to act as a surrogate decision maker. For the sake of consistency with this trend, as well as brevity, unbefnendedpatient is used throughout this book. See, for example, Ariz. Rev. Stat. Ann. 5 36-3231(B)(1994)j Ga. Code Ann. 5 31- 39-4(e)(1991 & Supp. 1995);Idaho Code 39-4303(c)(1993); N.Y. Pub. Health Law 5 2966(1) (Supp. 1996);N.C. Gen. Stat. 5 90-322(b)(1993); Or. Rev. Stat. 5 127.635(3) (Supp. 1994). 12 Resohiving Disputes Over Life-SustainingTkeatment

Principles of Decision Making Many principles concerning life-sustaining medical treatment decisions receive widespread recognition in law, medicine, and ethics. Some of these principles, such as those which identify individuals with legitimate decision-making authority, help guide the decision-making process. Other principles go to the heart of the decision-specifically, whether or not to terminate life-sustaining medical treatment in a given case. The decision-making principles described below represent only a small number of the principles developed by health care, bioethical, and legal organizations and institutions. They are, however, basic tools for appropriate decision making by patients, surrogates, and providers. Effective application of these principles may prevent or resolve disagreements without the need for involvement by courts or other outside individuals or institutions.

0 Adults are presumed to have sufficient capacity to make their own health care decisions, including those involving life-sustaining medical treatment. Minors of sufficient maturity and understanding may have the necessary capacity to make their own decisions about life-sustaining medical treatment; even minors who lack this capacity should be involved in the decision-makmgprocess to the greatest extent possible.

0 Health care providers are responsible for providing the information necessary to permit a patient or a patient’s surrogate to make informed decisions about life-sustaining medical treatment.

0 If a patient lacks decision-makingcapacity, the patient’s wishes, as expressed in a written or oral advance directive, should be treated in the same manner as the patient’s contemporaneous statements about his or her treatment preferences.

0 If a patient lacks decision-making capacity, a surrogate decision maker may make decisions on the patient’s behalf. Overview of the Decision-Making Process 13

No significant legal or ethical distinctions can be made between decisions to withdraw (stop) and to withhold (not start) life- sustaining medical treatment.

Artificial nutrition and hydration are forms of medical treatment that should be governed by the same practices and policies that apply to other forms of medical treatment. - - Neither state statutes nor court decisions routinely require judicial involvement in decisions about life-sustaining medical treatment. Judicial involvement should occur only when irresolvable disagreements arise among the individuals directly affected by the decision or when these individuals genuinely believe that judicial protection is necessary to safeguard the patient’s rights.

Patient Decision Making The cornerstone of modern patient decision malung is the right to “possession and control of [one’s] own person, free from all restraint from interference of other^."^ In health care, this principle is expressed as patient autonomy or self-determinationand is implemented through the principle of informed consent. In law, the principle is protected by the U.S. Constitution, some state constitutions, and the common law as a component of one’s liberty and privacy interests. Although the terminology differs somewhat between the health care and legal professions, both autonomy and liberty are based on the premise that an individual has the right to determine what is best for himself or herself. As a consequence, providers should honor the decisions of patients who have decision-malung capacity. Many individuals incorrectly use the terms decision-mhg capacity and competency interchangeably. For the purpose of this book, decision-malang capacity refers specifically to the clinical assessment

Union Pacific Rdroad v. Botsford, 141 U.S. 250, 251 (1891). 14 Resolving Disputes Qver Life-Sustaining ’Ikeatment of the patient’s ability to make informed decisions about the nature and consequences of treatment options. The term competency, in contrast, is a legal term-of-art. All adults are presumed to be competent unless a court, after examining evidence of the patient’s decision-making capacity, concludes that the patient is not capable of malung these decisions without the assistance of a guardian.* Health care providers and the patient’s family and friends should defer to the decision of a patient with decision-malung capacity to refuse life-sustaining medical treatment. With very few exceptions, courts will uphold these decisions if challenged by individuals who disagree with the patient’s deci~ion.~A patient’s refusal of treatment, however, differs from a patient’s request for treatment. Increasingly, developments in health care delivery-for example, the efficacy of proposed medical interventions or the effect of managed care and other forms of health care financing-raise legal, ethical, and practical questions about the propriety of acceding to patients’ demands for treatment. See Guidelines 21, “Medically Futile Treatment,” and 22, “Costs and Resource Allocation.” To date, no clear consensus has emerged in law, medicine, or ethics on these new developments. The point at which an individual attains decision-malung capacity is a widely debated question. All states presume that when an individual reaches age eighteen (or is legally emancipated),that individual possesses decision-malungcapacity and is fully entitled to make health care decisions for himself or herself. This presumption can be over- come if the individual in fact does not understand the nature and con-

For additional discussion about this distinction, see “Irresolvable Disputes over the Patient’s Decision-Making Capacity” on p. 103. See also Guideline 2, “Patient- Centered FOCUS.” Thomas L. Beauchamp and J. E Childress, Principles of Biomedical Ethics, 4th ed. (New York: Oxford University Press, 19941, 120-32. Courts typically note that the right of a patient to forgo life-sustaining medical treatment may be outweighed by state interests. These interests include the preservation of life; the prevention of suicide; the protection of innocent third parties; and the preservation of the ethical integrity of the medical profession. Satz v. Perlrnutter, 362 So. 2d 160 (Fla.App.), aff’d, 379 So. 2d 359 (1978).As a practical matter, however, these interests are almost never sufficient to outweigh the expressed treatment refusals of a patient with decision- malung capacity. Overview of the Decision-Making Process 15 sequences of the decision at hand. Increasingly, state law recognizes the capacity of ”mature minors” to participate in their own health care decisions.lo These laws, however, rarely extend to young children. Rather than relying on presumptions about decision-malung capacity based on the patient’s age, many providers and bioethicists prefer to make an individualized determination about a minor’s capacity to make health care decisions. They assert that a child’s expressed wishes regarding treatment should be respected and the child allowed to participate in the decision-malung process as much as possible. For the purpose of this book, the principle that people with decision-making capacity are entitled to male their own decisions about life-sustaining medical treatment applies regardless of the patient’s age.

Surrogate Decision Making An individual’s loss of decision-malung capacity does not negate the right of informed consent or patient autonomy. State law recognizes that patients can exercise their rights through written or oral directives. Federal law requires health care organizations to inform patients of their right to refuse treatment and to provide instructions about how to exercise that right (e.g., executing an advance directive).” Recently, courts have begun holding providers civilly liable for intentionally failing to comply with patient preferences as expressly stated in a valid advance directive.12

lo Alan Meisel, The Right to Die, 2d ed., vol. 2 (NewYork Wiley Law, 1995),276- 81.

l1 Patient Self-DeterminationAct, 42 U.S.C., 1395cc(f)(1) and 1396a(aJ(Supp. 1991).

lZ Osgood v. Genesys Regional Medical Center, No. 94-26731 (Genesee Cty. Cir. Ct. Feb. 16, 1996) (awarding $16 million in a medical battery case against a hospital that continued treatment for 38-year-old Brenda Young despite objections by her family that she would not want it). See also William Prip and Anna Moretti, “Compliance: The Missing Component in Patient Autonomy Laws,’’ Experience 6 (Spring 1996):4; andAlanMeise1, TheRight to Die, 2ded., vol. 2 (NewYork Wiley Law, 1995), 352-53 (“theso-called conservative advice not infrequently given by attorneys to health care institutions and physicians that it is best when in doubt to ‘play it safe’ and administer treatment rather than to permit a patient to die from withholding or withdrawing 16 RescPhhg Disputes over Life-Sustaining Treatment

Advance directives fall into two categories: directives that describe the patient’s treatment wishes under certain circumstances (generally called a living will) and directives that designate a surrogate or health care proxy to make decisions on the patient’s behalf (generallycalled a health care power of attorney). These directives take effect when the patient loses decision-malung capacity.l3 Generally, when an advance directive exists, decision malung proceeds relatively smoothly. Patient autonomy issues become troublesome in cases in which patients have neither specified their treatment preferences nor designated a surrogate decision maker in an advance directive.

WoShould Be the Surrogate? Most patients do not execute an advance directive. Other patients, because of age or mental disability, never develop the decision-malung capacity to do so. When no advance directive exists for a patient without decision-malung capacity, the first concern is determining who should act as the patient’s surrogate. Until recently, the law in many states was unsettled about whether a court had to appoint a legal guardian before he or she could make decisions for an incapacitated patient. It is increasingly certain, however, that family members usually may serve as the patient’s surrogate, even without specific statutory authorization or court appointment. Many states have enacted “family con-

treatment does not rest on a solid foundation”). But see First Healthcare Corp. v. Rettinger, 467 S.E. 2d 243 (1996).In First Hedthcare Corp., the North Carolina Su- preme Court held a patient with a valid advance directive financially liable for medical care provided by the hospital even after the patient’s surrogate had requested that life- sustaining treatment be terminated. Adopting the reasoning of the dissent in the lower court, the supreme court found the patient liable for the medical costs up to the time that the statutory requirements for implementing the patient’s advance directive- namely, certification by two physicians that the patient was terminally ill-were met.

l3 The Uniform Health Care Decisions Act, adopted in Maine and New Mexico, permits an individual to designate a surrogate to make health care decisions even if that individual still retains decision-making capacity, provided that the durable power of attorney contains an express provision to that effect. Uniform Health Care Deci- sions Act 5 2(c)cmt., 9 (Part 1)Uniform Laws Annotated 225 (Supp. 1996). Overview of the Decision-MakingProcess 17 sent” statutes that specifically allow a member of the family or other designated persons to make these decisions without judicial approval. Some states identify who may serve as surrogates, but require a formal procedure for the appointment of the surrogate, such as confirmation by a judge. Three rationales support the practice of designating a family member as the patient’s surrogate. First, as a general rule, family members are in the best position to know the patient and to have reliable information about the patient’s wishes. Second, the interests of family members are likely to coincide with those of the patient. Thus, family members can be relied upon to promote the patient’s interests. Legis- lation authorizing family surrogates reflects the presumption that intimacy among family members fosters communication and understanding about the patient’s preferences regarding life-sustaining medical treatment. Finally, most individuals want a family member to serve as their surrogate. Obviously, exceptions to this general rule exist. Many individuals maintain their most intimate relationships with people who are related by neither blood nor marriage. Moreover, broken relationships, dysfunctional families, and the absence of all but distant relatives may prepare family members poorly to act on the patient’s behalf. Close friends of the patient who have reliable information about the patient’s wishes or interests may be more appropriate as surrogates than individuals related to the patient by blood or marriage. In- deed, most bioethicists recognize “friends” as legitimate members of the patient’s “family.” Increasingly, legislatures include friends in the list of appropriate surrogates. Even when a state statute does not include non-family members in the pool of appropriate surrogates, however, health care organizations should suggest that the legal surrogate carefully consider information offered by the patient’s friends (aswell as by other relatives and health care providers who know the patient well) about the patient’s preferences.

Which Decision and Why? Once the appropriate surrogate has been identified, he or she must make decisions about the patient’s medical treatment including whether life-sustaining treatment should be withheld or withdrawn. 18 RessPvinag Disputes Over Life-Sustaining Treatment

The legal, health care, and bioethical literature commonly recognizes three standards of surrogate decision malung. The first standard applies to those cases in which the patient has previously made his or her treatment preferences known, either orally or in a written advance directive. Under those circumstances, the role of the surrogate is to communicate those preferences to the individuals involved in the decision-malungprocess, such as the patient’s providers and nonsurrogate friends and family. A current debate among bioethicists involves a variation of this standard-one that, in effect, permits a patient to grant the surrogate express authority to make decisions according to the surrogate’s own judgment, values, or treatment preferences.l4 Underlying this variation is the belief that patient autonomy is sufficiently broad to encompass a patient’s right to entrust the surrogate to make ultimate treatment decisions based on whatever criteria the surrogate deems appropriate. This book accepts this variation as consistent with patient autonomy and self-determination. Because this variation permits the surrogate to base his or her decision on criteria other than the patient’s wishes, however, it should be employed only when the patient has expressly granted the surrogate authority to do so in a durable power of attorney or other written advance directive. If the patient has not expressed his or her wishes, the surrogate should use the second standard-commonly called the ”substituted judgment” standard-to discern the patient’s probable wishes. This process involves the surrogate’s good-faith inquiry into the patient’s values, beliefs, and lifestyle. The point of the inquiry is to determine what the patient would have wanted if he or she had sufficient decision-malung capacity to express treatment preferences. As a practical matter, absent disagreement among family members, friends, or mem-

l4 Some state statutes prohibit surrogates from basing their decisions on any criteria other than the patient’s wishes. See, for example, Tex. Civ. Prac. and Rem. Code Ann. § 135.002(e)(requiring surrogates to make health care decisions “according to the agent’s knowledge of the principal’s wishes, including the principal’s religious or moral beliefs or in accordance with the principal’s best interests, if the principal’s wishes are not known”). To date, no courts have reported decisions that specifically address patients’ authority to confer unlimited discretion on surrogates. Overview of the Decision-MakingProcess 19 bers of the patient’s health care team, a surrogate usually is not asked to provide a detailed explanation in support of his or her decision. Instead, close friends, family members, and providers generally are satisfied that the surrogate is acting in good faith and that the decision reflects the patient’s wishes and values. Unfortunately, a patient’s wishes and values may not always be clear. In other instances, such as cases involving infants or individuals with a severe mental disability, the patient may never have had the capacity to formulate or express preferences. Under these circumstances, the usual practice is to permit surrogates to use the third standard-the “best interests” standard-to make decisions for the patient. Determining a patient’s best interests generally includes evaluating objective medical criteria such as the patient’s diagnosis and prognosis, the amount of enjoyment and suffering the patient is likely to experience, and the likelihood that the use of life-sustaining medical treatment will restore the patient to his or her previous quality of life. This determination is not a purely clinical one, however. Often it is an almost intuitive determination that requires an evaluation of what a reasonable person in the patient’s situation would want.I5Health care providers should note that some courts expressly reject the application of a “best interests” standard in life-sustaining treatment decisions.16Instead, some state courts have ruled that if a surrogate lacks sufficient information about the patient to make a reliable inference about his or her treatment preferences, providers should continue life- sustaining medical treatment. Although providers may inquire about possible conflicts of interest or the good faith of the surrogate’s investigation and decision, they should not dispute the surrogate’s decision solely because they disagree with it. However, if friends, family members, or providers sus-

Many courts differ on the specific criteria that should be included in determining a patient’s “best interests.” The factors listed above are among the ones most frequently cited in judicial opinions. For the purpose of this book, “best interests” incor- porates what a reasonable person in the patient’s situation would want.

l6 Alan Meisel, The Right to Die, 2d ed., vol. 2 (NewYork Wiley Law, 1995),397- 400. 20 Resolving Disputes Over Life-Sustaining Treatment pect that the surrogate’s decisions do not conform to the patient’s actual or probable wishes or the patient’s best interests, they should inquire about the surrogate’s reasons for his or her decisions. Like- wise, they should question the surrogate’s decision if they believe the surrogate has a significant conflict of interest or is not acting in good faith. If the matter is taken to court or if judicial authorization is required to carry out the surrogate’s decision, the surrogate must demonstrate that the decision conforms to the appropriate legal standard recognized in that state for decision malung for incapacitated patients. Before authorizing a surrogate’s decision, a court will require a certain amount of “proof” in support of the surrogate’s decision. This proof can include evidence of direct oral or written statements made by the patient. The surrogate’s knowledge of the patient’s values and how the patient would apply these values also may provide sufficient evidence to justify the surrogate’s decision. In some cases, the surrogate may lack sufficient knowledge about the patient’s values to support a decision based on substituted judgment. Other evidence, however, may be ‘ relevant for making a decision based on the patient’s best interests. In addition to listing specific proof to be used to justify a surrogate’s decision, most state statutes and court decisions also describe the weight of evidence-the standard of proof-needed to satisfy a court that the surrogate’s decision is valid.

Applying the risleigles of Decision Making Although the specific legal requirements for decision malung vary somewhat from state to state, little disagreement exists between law and customary health care practice about the validity of these principles. In many instances, adhering to these principles will avoid or minimize conflict in cases concerning life-sustaining medical treatment. In addition, better understanding of these principles may relieve much of the uncertainty, guilt, and anguish experienced by the patient and the patient’s family members, friends, and health care providers when they are confronted with these decisions. The remaining chapters set forth practical suggestions for translating these principles into specific policies and procedures for health care organizations. Sources of Disagreements 21

Sources of Disagreements

The people involved in decisions about life-sustainingmedical treatment typically make these decisions without substantial disagreement. When disagreements arise, however, they are often complex and can change over time. Sometimes, an apparent disagreement simply reflects a need for time for the participants to adjust to significant changes in the patient’s condition. Nevertheless, people in good faith sometimes disagree. Patients, family members, and health care providers often possess deep-rooted-and sometimes conflicting-values and beliefs about life-sustainingmedical treatment. Values and beliefs stemming from cultural, ethnic, and religious heritage can play a pivotal role. Furthermore, the decision-malung process implicates a number of important values and beliefs in addition to patient autonomy, such as respect for human dignity and trust in intimate human relationships, that can form the basis for disagreements. ’ Emotional and psychological reactions to the decision-makingpro - cess also cause disagreement. Although the distinction between withdrawing and withholding treatment has no legal or ethical significance, it nevertheless can have a profound emotional effect on decision makers. Similarly, despite widespread agreement that artificial nutrition and hydration are simply another form of life-sustaining medical treatment, many people feel strongly that these forms of treatment are fundamental and owed to all people. Consequently, they are extremely resistant to suggestions to terminate them. Life-sustaining medical treatment issues also encompass new and challenging questions. Developments in medicine, technology, law, and ethics continue to affect these disagreements. Also complicating their resolution are recent changes in the organization of health care delivery and the settings in which decisions about life-sustaining medical 22 Resolving Disputes Ovea ]Lide-SnstainingTreatment treatment occur. Conflict may result from payment restrictions, the use of multiple providers, transfer requirements or restrictions, and other characteristics associated with health care payment systems and managed care. Similarly, government regulation of long-term care facilities may complicate the resolution of these disagreements. For example, these regulations may characterize withholding or withdrawing care as mistreatment, rather than as respect for the individual’s treatment wishes. New answers are needed to address these developments. Disagreements also stem from uncertainty or miscommunication. Uncertainty may arise because of difficulty in determining the patient’s medical condition or the effect of various treatment alternatives. Like- wise, the patient’s failure to state his or her treatment preferences explicitly can create uncertainty. Miscommunication may result from a failure to convey clear and relevant information. Disagreements of this type are more likely to arise when interested individuals do not have an accurate picture of the patient’s treatment wishes, diagnosis, prognosis, and treatment options or the concerns, hopes, and fears of other interested individuals. Understanding the bases of disagreements about life-sustaining medical treatment can lead to more appropriate means of resolving them. This understanding often prevents disagreements addressed at an early stage from escalating unnecessarily. Sometimes, however, disagreements are an appropriate and healthy way of letting the individuals resolve tensions. The nature of these disagreements tends to vary with the stage of the disagreement. Disagreements can be resolved at any one of three basic stages: at the bedside, within the health care organization, and in the courts. The remaining three chapters of this book, which discuss strategies for managing the decision-malung process, correspond to each of these stages. The fluid nature of disagreements over life-sustaining medical treatment, however, results in considerable overlap among these stages. Health care organizations should be prepared to adjust their responses accordingly. Initially, disagreements about life-sustaining medical treatment tend to occur among those immediately involved in the patient’s care, including the patient or surrogate, the patient’s immediate family and friends, and the patient’s health care team. During this stage, discussions and decision malung occur at the patient’s “bedside.” Sources of Disagreements 23

Among the numerous reasons a disagreement over life-sustaining medical treatment may occur at the bedside are:

The health care staff has not elicited the beliefs and feelings of the patient or the patient’s family and friends; The patient, family members, or friends are unwilling or unable to listen or respond to information provided by the health care staff; Preexisting intrafamily disagreements have left family members deeply divided; Participants in the decision-malung process have spent insuffi- cient time discussing the decision-for example, staff members may not have discussed the decision with each other, patients, or friends and family, or patients may not have discussed it with family and friends; Family members and friends are frustrated by the health care system in general or by the course of the patient’s condition, especially following a long illness; Treatment by a multitude of providers or frequent changes in the assigned providers, caused by fragmentation or specializa- tion in the patient’s care, has resulted in confusion, conflicting messages, and lost confidence; Different people simply reach different conclusions at different times based on their own dispositions, backgrounds, and experiences; and Cultural, ethnic, and religious differences among participants in the decision-malung process have become a source of conflict.

Regardless of the source of the disagreement, health care staff should be sensitive to warning signals of a brewing disagreement. For example, the nature of the questions posed by family and friends may begin to change. Questions may become either more fundamental or more su- perficial. The number of‘ questions asked may increase or decrease 24 Wesdvbg DkpaUes over Life-SustainingTreatment significantly. Patients, family members, or friends may start malung demands that staff consider unreasonable. Staff may notice that patients or their friends and family are beginning to question the physician’s judgment by seelung out the opinions of other members of the health care team. Additionally, the various participants (including members of the health care team) may not want to discuss important issues. Partici- pants may voice complaints about their inability to “get through” to other participants, that is, make them understand their perspective. Family and friends who previously arrived together may begin to ar- rive at different times; individuals who previously engaged in discussion may become noticeably more quiet. Participants may begin to be late for appointments or to miss them altogether. Participants who previously interacted freely may now avoid eye contact or appear noticeably uncomfortable in the presence of certain other participants. When a seemingly unresolvable disagreement arises, additional individuals associated with the health care organization typically become involved in managing the disagreement. Using these resources may be appropriate when there are disagreements over:

0 The patient’s treatment decision (when a surrogate is involved, the disagreement may involve whether the surrogate is accurately understanding and conveying the patient’s wishes);

0 The patient’s medical condition (e.g., the reliability of the patient’s diagnosis and prognosis, the imminence of death, the available treatment options and their probable results, or the ability to manage the patient’s pain effectively); * The patient’s decision-malung capacity (e.g., the accuracy of an assessment of the patient’s mental state or the effect of the patient’s mental state upon the patient’s expressed treatment preferences); * The surrogate decision maker for a patient laclung decision- malung capacity (e.g.,the identity, choice, and qualifications of the surrogate);

0 Whom to designate as the surrogate decision maker for an unbefriended patient; Sources of Disagreements 25

How to determine the patient’s probable wishes using “substituted judgment”; How to determine the patient’s best interests when his or her wishes cannot be ascertained; Treatment decisions for a minor, such as the extent of the minor’s authority to make health care decisions; the amount of clinical information to be disclosed to a minor; the nature of interests for infant patients; the appropriate surrogate for a minor whose parent is suspected of abuse or neglect; and disagreements about treatment between the minor patient and his or her parent or guardian; The appropriate placement or transfer of the patient; Financial issues potentially affecting patient care (eg,when insurance and benefits coverage affect the patient’s treatment decisions or when participation in a managed care plan influ- ences treatment choices); e How to handle conflicts of interest involving providers or the health care organization (eg, when financial interest in the patient’s treatment compromises the provider’s ethical obligations or when the desire to avoid legal liability compromises patient care); e How to handle potential conflicts of interest involving the patient’s surrogate decision maker or family (e.g., disqualification of the surrogate if his or her judgment may be compromised by being a beneficiary under the patient’s will or insurance policy or by dependency on the patient’s continued income, or disqualification of the surrogate if he or she demonstrates indifference, hostility, or an obsessive emotional attach- ment to the patient that interferes with the surrogate’s ability to make decisions on the patient’s behalf); The appropriate role of the provider or the surrogate in the decision-malung process; or The appropriate use of advance directives by providers or surrogates. 26 Resolving Disputes Over Life-Sustaining Treatment

Many of the disagreements described above involve factual or legal disputes. Existing professional or administrative methods (e.g., clinical conferences and chart reviews) are helpful for resolving disagreements over technical questions, such as interpretations of medical tests or prognoses for particular diseases. A wide variety of disputes in contemporary health care, however, arise as a result of miscommunication, misunderstandings about factual issues, and differences in values among the participants. This book-Chapter 4 in particular-focuses on the groups and individuals, such as ethics consultants and committees, that health care organizations can make available to address issues that in current parlance are called “bioethical.” Qf course, no hard and fast line can be drawn between “issues of fact” and “matters of value.” In individual cases, disagreements about facts and values inevitably are closely interwoven. Scientific or clinical disputes often implicate ethical matters. Nonetheless, many health care organizations have found merit in making processes and individuals available to help resolve questions of value. While recognizing that disagreements and uncertainties about life-sustaining medical treatment may implicate a wide range of questions, the guidelines offered here focus primarily on those that raise ethical considerations. If groups or individuals available within the health care organization fail to resolve the disagreement, judicial involvement may become necessary. Providers should not routinely invoke judicial involvement in disputes over life-sustaining medical treatment, however. Judicial involvement may be unnecessary or premature and can be emotionally and financially burdensome for the individuals involved in the disagreement. Chapters 3 and 4 describe strategies for managing these disagreements that are generally more appropriate and often more effective. Nonetheless, judicial involvement can resolve disputes that have become irresolvable by any other means. It can give the disputants an opportunity to air their views before an impartial judge and can limit further exacerbation of tensions. Chapter 5 contains a discussion of the proper role of the courts in life-sustaining medical treatment cases, including suggestions for interacting with the patient and family during litigation, the role of legal counsel, and information about judicial procedures and judicial decision malung. Preventing and Resolving Disagreements 27

Chapte Preventing and Resolving Disagreements

The pressures associated with decisions about life-sustaining medical treatment sometimes cause small misunderstandings to grow into major disagreements. By talung appropriate steps at a relatively early stage to defuse misunderstandings, health care providers often can prevent major disputes. This chapter recommends a context for conducting discussions and making decisions about life-sustaining medical treatment at the patient’s “bedside”-where most disagreements begin. It specifically targets those providers who are directly responsible for the patient’s care. Chapter 2 discussed some of the sources of disagreements and their warning signals. Open, frank, and amicable interactions among these individuals can reduce the number of disagreements. This re- duction, in turn, limits the need to call on other individuals or the courts. Contemporary debate about life-sustaining medical treatment in- corporates a broad range of opinions about how the decision-malung process should occur. At the heart of this debate lies a fundamental tension between two approaches to the decision-making process. An older approach views this process as an effective way to secure patient compliance with the decisions of health care providers. Proponents of this view perceive the appropriate role of providers as decision makers with a responsibility for acting in the best interests of the patient. A more contemporary, rights-oriented approach holds that patients have exclusive decision-malung authority and that the role of providers is to inform patients about the consequences of health care decisions. Intermediate between these two positions, a consensus has developed that clinical decision making should be a collaborative process among the patient or the patient’s surrogate, the patient’s family and 28 Resoh6ng Disputes Over Life-Sustaining Treatment friends, and the immediate health care team. Although this approach maintains the primacy of patient or surrogate authority over decision making, it also provides a process in which nonsurrogate family members, friends, and providers can express their interests and concerns. It encourages a reasoned decision-malung process, enhancing the likelihood that all interested participants will work together and accept the decisions. Finally, it promotes the well-being of all participants, some of whom-especially family members-will continue to interact well into the future. The guidelines in ths chapter describe what providers can and should do to prevent or resolve disagreements about life-sustaining medical treatment. They are divided into four thematic categories. The first twelve guidelines focus on the importance of communicating effectively, including making discussions as patient-centered as possible. The next three guidelines stress the importance of managing the environment in which these decisions are made. The next three guidelines in this chapter emphasize the importance of understanding, managing, and respecting the roles of the participants in the decision-malung process. The final four guidelines address special issues that often complicate decisions about life-sustaining medical treatment.

Effective Communication

Guideline U : Early Discussions Health care providers should initiate discussions at an early stage, before questions regarding termination or continuation of life- sustaining medical treatment become problematic and crisis driven.

Commentary

A critical key for preventing or resolving disputes concerning decisions about life-sustaining medical treatment is to address issues at an early stage. If delayed until the patient’s condition deteriorates, discussions tend to become heated, making consensus more difficult. Of particular importance is early, thorough, and ongoing communica- Preventing and Resolving Disagreements 29 tion between the patient and the patient’s primary health care provider. Often, the patient’s primary care provider has the first opportunity to discuss life-sustaining medical treatment with the patient. These discussions should be part of routine medical practice. By discussing these issues during regular office visits, the patient and his or her primary care provider can develop a mutual understanding about the patient’s preferences. Early conversations permit them to resolve potential misunderstandings before a crisis makes resolution more difficult. Of course, the primary care provider may not always be immediately available to inform others about the patient’s preferences. Providers other than physicians are expected to engage in these discussions as well. The provider also should consider holding early discussions with the patient’s family and close friends. Their participation in the decision-malung process often has several benefits. Many patients welcome-and even expect-close friends and family to participate in these discussions. Early discussions can facilitate their ability to understand and accept the patient’s wishes, thus defusing the likelihood of future disagreements. Shared decision malung also can facilitate the grieving process and relieve the isolation that may accompany the decision- malung process. In contrast, postponing these discussions, particularly until a crisis occurs, can cause family or close friends to resist decisions or obstruct the decision-malung process. They may resent what they perceive as the imposition of previously determined decisions, even when those decisions directly reflect the patient’s wishes. Alternatively, they may be oveqhelmed by the turn of events and be unable to respond appropriately. Unless the patient’s condition prevents it, respect for patient privacy and confidentiality ordinarily requires the health care provider to seek the patient’s permission before holding conversations with family or close friends. Furthermore, the patient should have the option of participating in these discussions. Nevertheless, because participation by friends and family may be beneficial, providers should encourage patients to permit these early conversations. Discussions about life-sustaining medical treatment should identify specific goals for patient care. Even when the patient’s condition is irreversible, providers should identify goals towards which the patient 3Q Resokiang Disputes Over Life-Sustaining Treatment and family can continue to work (e.g., keeping the patient comfortable). Additionally, providers should use affirmative language during these discussions. Dwelling on what will not be done (e.g., that cardiopulmonary resuscitation will not be provided for the patient) can create an impression that providers are abandoning the patient. How- ever, providers should not create false illusions about what can or will be done. For example, telling the patient or family and friends that “we’ll do whatever you want” is inappropriate and misleading.

Guideline 2: Patient-Centered FQCUS %he patient and the patient’s treatment preferences should be the ~QCUSof the decisionmaking process.

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A second key for preventing or resolving disagreements over life- sustaining medical treatment decisions is to make all discussions as patient-centered as possible. Unfortunately, various factors sometimes cause health care providers and family members to lose sight of the patient’s needs and desires. In acute-care settings, for example, the availability of new technologies and procedures can lead providers to assume incorrectly that the patient wants any and all available medical interventions. Providers may be so intent on saving the patient’s life that they fail to recognize the practical limitations of these interventions, the burdens placed on the patient, and the patient’s right to refuse these efforts. Alternatively, pressures to increase efficiency or contain costs may tempt staff to manipulate the patient’s treatment plan to meet the facility’s management needs. Furthermore, family, friends, and staff may be preoccupied with their own concerns, with resolving disputes among themselves, or with absorbing the tragic nature of these events. Contemporary patient care takes place in a number of settings other than acute-care facilities. The types of health care professionals prac- ticing in these settings and their relationships with patients and families can alter the dynamics of patient care, raising different types of obstacles to patient-centered care. In long-term care situations, for example, staff members may develop such strong emotional ties to Preventing and Resolving Disagreements 3 1 patients that they lose their objectivity. In facilities with high staff turnover, however, providers may have limited ability to become familiar with patients or their preferences about life-sustaining medical treatment. In contrast, family resources and family dynamics often have a greater effect on how patient-centered discussions occur in home- care settings. Decisions about substantive issues, such as resuscitation and the role of emergency personnel, may change as a result of these dynamics. Despite these differences in setting, discussions about life-sustainingmedical treatment should center on the patient’s wishes. This focus is legally and ethically appropriate and, from a practical standpoint, provides a direction to the decision-malung process that helps undy the participants towards a common goal-effectuating the wishes of the patient. The contemporaneous treatment preferences of patients with decision-making capacity generally control the decision. The actual form of these expressions is unimportant. Either written or spoken expressions are acceptable. Patients who cannot speak-because of the inser- tion of a breathing tube, for example-should be allowed to express their wishes by writing, signing, or otherwise indicating them. Expres- sions may consist of responses to specific questions, rather than statements initiated by the patient. On a limited number of occasions, the provider may need to determine whether the patient’s express3 treatment preferences reflect the patient’s wishes or those of others. Although patients occasionally change their minds about treatment preferences, they sometimes modify their expressed preferences to please others, to obtain their approval, to spare others trouble and expense, or to assuage feelings of guilt. This may be particularly true for minors and for adults who are long-term care patients. Although these motives may be valid grounds for the patient’s wishes, providers may need to scrutinize them to ensure that the patient’s expressions are not the product of manipula- tion or coercion. Ordinarily, however, the patient’s expressed wishes control. Consequently, this scrutiny should occur infrequently. Before making treatment decisions that rely on information other than the patient’s contemporaneouslyexpressed preferences, the health care provider should determine that the patient currently lacks decision-malung capacity. A patient is generally capable of making health care decisions if he or she is able to understand the nature of the treat- 32 Resolving Disputes aver Life-Sustaining Treatment ment choices available, is aware of the consequences associated with those choices, and is able to make an informed choice that is voluntary and not coerced.” When malung this determination, the provider should keep in mind that a patient may not have the capacity to make other types of decisions (e.g., regarding financial matters), but may still have the capacity to make health care decisions. The provider should also make sure that the patient has sufficient information to make informed decisions. Explanations about treatment options should consider the patient’s language proficiency, relevant aspects of ethnic or cultural background, and, particularly when the patient is a minor, age and emotional development. If the patient’s decision is the product of an informed choice, the provider should respect that choice even if others disagree. The fact that a provider or family and friends disagree with the patient’s choice is not sufficient to establish incapacity. Other factors that do not necessarily indicate incapacity include the patient’s age, previous incapacity, physical disability, level of intelligence, values or beliefs, homelessness, unbefriended status, or alcohol or substance abuse. If a patient lacks decision-malung capacity, the provider should determine whether the patient has executed an advance directive or appointed a health care proxy.18 All states recognize preferences

l7 See Coordinating Council on Life-SustainingMedical Treatment Decision Mak- ing by the Courts, Guidehes for State Court Decision Makingin Life-Sustaining Medical Treatment Cases [St. Paul, Minn.: West, 1993), 60. See also The President’s Commis- sion for the Study of Ethcal Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment: Ethical, Medical, and Legal Issues in Treatment Decisions [Washington:U.S. Government Printing Office, 19831, 43-60, 9 1- 118, 121-26; The Hastings Center, Guidehes on the Termination of Life- Sustaining Treatment and the Care of the Dying [Briarcliff Manor, N.Y: The Hastings Center, 1987), 7, 131. See also Barding, 209 Cal. Rptr. 220, 223-24 (Cal. Ct. App. 1984);Cruzan, 760 S.W. 2d 408,417 (Mo. 1988))aff’d, 110 S. Ct. 2841 (1990);Conroy, 486 A.2d 1209, 1241 (1985); Clark, 510 A.2d 136, 137 (N.J.Super. Ct. Ch. Div. 1986). Advance directives typically become effective only after the patient loses decision-malung capacity. The Uniform Health Care Decisions Act permits a patient to designate a surrogate to make health care decisions even though the patient retains decision-making capacity. Uniform Health Care Decisions Act 5 2(c)cmt., 9 [Part 1) Uniform Laws Annotated 225 (Supp. 1996). Preventing and Resolving Disagreements 33 expressed in advance directives [e.g., living wills or health care proxies) as valid. In addition to written directives, other prior expressions of the patient’s wishes, such as spoken statements and physical ges- tures, can be valid. See the section “Which Decision and Why?” in Chapter 1. Ordinarily, if the patient lacks decision-malung capacity, the existence of an advance directive limits the need for further inquiry into the patient’s treatment preferences by the provider. Under certain circumstances, however, disagreements over the validity of the advance directive or the proper application of its provisions may occur. For example, questions may arise whether a living will was properly made, what specific provisions mean, whether proposed treatment plans conform to the provisions of the living will, whether the patient later expressed other treatment wishes, and what weight these later expressions should have. Similarly, providers may need to inquire whether a designated surrogate actually is acting according to the patient’s wishes. Under these circumstances, providers may need to consider other evidence of the patient’s wishes. When no disagreement over the advance directive or its application exists, however, providers rarely should inquire further into the patient’s treatment wishes. Information about a patient’s lifestyle may be the best available indication of the wishes of an incapacitated patient who does not leave an explicit expression of his or her wishes. Alternatively, this information may be useful for interpreting and understanding a patient’s previously expressed wishes. Because this information may be subject to multiple interpretations, however, the provider should exercise considerable caution before relying on it. In addition, this kind of information is irrelevant in some states, notably New York and Missouri.lg

Guideline 3: Decision Making by Patients Who Are Minors The health care organization should encourage patients who are minors to participate in decision making to the greatest extent possible given the minor’s functional capacity.

‘9 N.Y. Pub. Health Law § 298212); Cmzan K Director, Missouri Dept. of Hedth, 110 S. Ct. 2841 (1990). 34 Resohhg Disputes Over Life-Sustaining Treatment

Commentary Health care providers may need to take special steps to involve patients who are minors in the decision-malung process. Minors may be classified into three separate categories. The first category includes “emancipated minors.”Z0 If the minor is emancipated under state law, the minor should be treated as an adult patient. A second category includes “mature minors.” This concept varies across states. In general, mature minors can understand the nature and consequences of proposed medical treatment, can evaluate their options, and can make voluntary decisions regarding these options, including the option of declining treatment. Thus, providers should give great weight to their preferences about life-sustaining medical treatment. A thrd category consists of nonmature minors, which includes all minors who are neither emancipated nor mature. Nonmature minors also have a role in the decision-malung process. Being a nonmature minor does not automatically exclude the minor from participating in decision malung. The focus should be on the minor’s functional ability to participate, even if he or she does not fully understand everythingunder discussion. Decisions involving life- sustaining medical treatment generally require parental consent, but providers should also seek the minor’s assent when possible.21The minor should receive assistance to enable him or her to participate as far as his or her functional ability allows. The involvement of a parent or an older sibling may greatly help the minor understand and participate in decision malung. Unless they are disqualified for some reason, parents are recognized by law as the natural guardians of their minor children.22As a

2o Generally, emancipated minors are persons under the age of eighteen who have married, enlisted in the armed services, made a valid declaration of emancipation or established their independence, or obtained the consent of their parents to assume this status.

21 American Academy of Pediatrics, Committee on Bioethics, “Informed Consent, Parental Permission, and Assent in Pediatric Practice” (February 1995).

22 Alan Meisel, The Right to Die, 2d ed., vol. 2 (New York Wiley Law, 1995))274- 76. Preventing and Resolving Disagreements 35 result, providers generally (and correctly] defer to parents in decisions involving health care for minors. Parents typically are best situated to consider the best interests of the child. In cases involving older children, the parents have had years to assess the child’s personality and thus can best represent the child’s treatment wishes. In addition, parents of older children with chronic conditions have had the opportunity to become knowledgeable about their child’s particular disorder. In cases involving critically ill or handicapped infants, however, providers sometimes question the ability of parents to serve as appropriate surrogates for their children. First, parents of newborns have not had the same opportunity as parents of older children to assess the child’s personality or become knowledgeable about the child’s physiological condition. Thus, the presumption favoring the parents on these grounds is weaker. Second, parents of handicapped infants may have difficulty in bond- ing with their child. Parents sometimes experience the birth of a pro- foundly handicapped infant as a double tragedy: the loss of the expected normal infant and the appearance of an unwanted infant.23In addition, the parents may be physically separated from the baby for prolonged periods. For example, the baby may be admitted to a tertiary care center, or the intensive care setting, including tubes, monitoring devices, incubators, or the need for gowns, gloves, or masks, may hinder close contact with the parents. In some cases, the burden that the infant presents to the parents-psychological, social, and financial- is explicitly stated; the parents may acknowledge that the infant’s survival is a threat to their well-being or that of their family.24More commonly, members of the health care team suspect or raise this conflict of interest. The federal “Baby Doe” regulations, created in response to concerns about inappropriate decision malung on behalf of handicapped

23 A. L. Solnit and M. H. Stark, “Mourning and the Birth of a Defective Child,” Psychoanalytic Study of the Chdd 16 (1961):523.

24 R. S. Duff and A. G. M. Campbell, “Moral and Ethical Dilemmas in the Special- Care Nursery,’’ The New England fournal of Medicine 289 [ 1973): 890. 36 Resohhg Disputes Over Life-Sustaining Treatment infants, further complicate decision making in these cases.25These regulations require state protective service systems, as a condition of receiving federal funds for child abuse programs, to have procedures for responding to reports of alleged discrimination on the basis of handi- cap. The regulations require protective service departments to respond in a prescribed way to ensure that infants receive appropriate evaluation and treatment. Although some states26have incorporated the federal regulations into their own child abuse statutes, the Baby Doe regulations do not directly apply to doctors or hospitals. They do not, for example, require that reports be made or that, in the absence of a report, an infant be treated according to the regulations. Nevertheless, some neonatolo- gists have changed their practices based on the incorrect belief that the regulations require them to do In practice, these changes consistently have resulted in "overtreatment," that is, treatments that, in the opinion of the child's physician, do not serve the interests of the child.

Guideline 4: Establishing Trust Health care providers should establish a trusting relationship with the patient and the patient's family.

Commentary Establishing a trusting relationship with the patient and the patient's family is another important key to preventing and resolving disagreements at the bedside. The existence of a prior relationship with the patient and the patient's family (eg,as a primary health care

25 See 42 U.S.C. 5106a(bJ(1) (1989);45 C.F.R. 1340.15 (Servicesand Treatment for Disabled Infants]. See also Robert Weir, Selective Nontreatrnent of Handicapped New- borns [NewYork: Oxford University Press, 1984). See, for example, Ill. Ann. Stat. ch. 755, para. 40/40 (Smith-Hurd 1993).

27 Loretta M. Kopelman, Thomas G. Irons, and Arthur E. Kopelman, "Neonatolo- gists Judge the 'Baby Doe' Regulations," The New England Iournal of Medicine 3 18 (1988): 677. Preventing and Resolving Disagreements 3 7 provider] may ease some of their fears and suspicions. In many situations (e.g., emergency and other acute-care settings),however, the provider has had no prior contact with the patient and the family. Consequently, the provider will have the difficult task of simultaneously trying to collect sufficient information to make responsible health care decisions and to establish a worlung relationship with the patient or the patient’s family. Participation by multiple providers in the patient’s health care may complicate this problem further by diffusing responsibility for decision malung among consulting physicians or specialists. Finally, differences in racial, cultural, ethnic, and other characteristics among the patient, the patient’s family, and the health care providers can arouse suspicions of bias. When these characteristics appear to undermine trust in the providers, the providers should address these differences openly with the patient and the family. Moreover, providers should be candid with themselves about their own biases and remain aware of the unspoken premises that influence their interactions with patients and families. See Guideline 11, “Impact of Diversity.”

Guideline 5: Encouraging Questions Health care providers should encourage patients and family members to ask questions.

Commentary Encouraging patients and family members to ask questions of health care providers about the patient’s care is important for preventing and resolving disagreements that arise at the bedside. Although time is important to many providers, rushing through discussions without providing an opportunity for questions often requires more time in the long run to resolve disagreements. Encouraging patients to ask questions decreases the likelihood that patients will misunderstand or overlook important issues. Allowing time for questions by family members encourages constructive participation in decision malung, thus preventing inappropriate opposition later. Patients often want to participate in discussions about life-sustaining medical treatment, but are unable or reluctant to address these 38 &SQhilag Disputes oven Life-SustainingTreatment issues directly. They may feel uncomfortable with the issues or intimidated by the health care staff and setting. They may lack sufficient understanding about the issues to know how to frame the right questions. In some cases, health care providers may need to help patients and family members formulate questions. Finally, the emotional nature of the issues may overwhelm them. Family members also experience discomfort and intimidation when they first begin to discuss life-sus taining medical treatment. Providers should give patients and family members an appropriate setting in which to ask their questions. Preferably, this setting will be free of distractions and interruptions, allowing providers to give their undivided attention to the questions. Providers should attempt to create an atmosphere in which questions are expected and welcomed. Health care providers also should offer patients and family members regular opportunities to discuss the issues. These discussions help accomplish four important objectives. First, they promote trusting relationships between the patient, the patient’s family, and the providers. Second, they increase the likelihood that patients and family members will raise issues of concern with health care staff. Third, they provide staff with an opportunity to determine whether the patient and family fully understand the information. Finally, they help ensure that staff have not misunderstood or taken for granted the wishes and interests of the patient and the concerns of family members. Discussions should be ongoing because of their nature and the atmosphere in which they occur. Patients and family members often think of additional questions after the first discussion. In addition, new information often generates new questions. Scheduling follow-up sessions for new questions relieves the pressure to ask every conceiv- able question during the first session. They also provide the participants with an opportunity to consider carefully the implications of the original information and any new, subsequent information. At these follow-up meetings, the provider should repeat much of the information presented at the first meeting to ensure that patients and family members understood it. The health care team should consider designating a specific team member to answer questions from the patient and the patient’s family. This team member can develop a trusting relationship with the patient and family, thus encouraging them to ask additional questions Preventing and Resolving Disagreements 39

as they arise. Depending on the circumstances, some staff may be better situated than others to fulfill this role. For example, a charge nurse who is regularly on duty during visiting hours may be more accessible to family and friends than a physician who makes rounds only periodically during the day. In addition, some people are more comfortable than others in handling interpersonal communication. All members of the patient's health care team should refer all questions to the designated team member to minimize the risk of giving inconsistent or confusing information. This technique also optimizes the use of staff time.

Guideline 6: Individualized Discussions

Health care providers should promote highly individualized discussions about life-sustaining medical treatment.

Commentary I Another key to preventing or resolving an incipient disagreement is to promote highly individualized discussions about life-sustaining medical treatment. Every patient has a unique perspective on decision malung that may vary with changes in medical condition, prior medical treatment, previous life experiences, and a number of other factors.28Likewise, the patient's relationship with family members, as well as their relationships with each other, creates a unique set of family dynamics that influence decisions about life-sustaining medical treatment. As a result, the patient and his or her friends and family may have highly individualized treatment preferences and views on the decision-mahngprocess. Attempting to use a single decision-making approach may lead to misunderstandings, antagonism, resentment, and disagreements among the various participants.

28 In addition, the general preferences of patients may change. Linda Emanuel et al., "Advance Directives for Medical Care-A Case for Greater Use," The New England lournal of Medicine 324 (1991):889; Lawrence J. Schneiderman and Roger G. Sprag, "Ethical Decisions in Discontinuing Mechanical Ventilation," The New England lournal of Medicine 318 (19881: 984. 40 Resolving Disputes Over Life-Sustaining IIkeatment

Health care providers should avoid making assumptions about what patients and family members will want under any given set of circumstances. Even if the patient has expressed his or her treatment preferences in an advance directive, the document by itself may leave a number of questions unaddressed. The advance directive should be used as a springboard to initiate individualized discussions, not as an excuse to avoid or end them. Providers can minimize potential disputes by exploring with each patient his or her own treatment preferences and views on the decision-making process. The provider also should explore the preferences of family members when they play a role in the decision-malung process. Although the patient’s wishes ultimately control, family members often play a considerable role in the decision-malung process. See Guideline 17, “Involvement of Fam- ily Members.” The provider should consider the participants’ capacity to understand information about life-sustaining medical treatment and discuss this information at an appropriate level. Patients and family members often have limited familiarity with health care terminology and procedures. As a result, the provider should discuss matters in terms that the patient will understand. Sometimes, however, providers underestimate the capabilities of the individual, particularly with elderly patients. Pitching discussions at a condescending level neither demonstrates respect for the individual nor adequately engages the individual in discussions.

Guideline 7: Pace of Decision Making Health care providers should recognize and respect the pace at which individuals are comfortable with receiving new information and making difficult decisions.

Commentary The process by which individuals make treatment decisions, including the time needed to come to a decision, varies among individuals. Thus, another important key for preventing and resolving disagreements at the bedside is to recognize and respect the pace at which individuals are comfortable with receiving new information and Preventing and Resolving Disagreements 4 1 malung difficult decisions. An appropriate pace for the decision-making process enhances the likelihood that participants will not regret earlier decisions or attempt to reverse or challenge them. Patients, family members, and even health care providers generally need time to absorb new information and to adjust to changes in circumstances associated with decisions about life-sustaining medical treatment. In addition, patients and family members commonly go through a period of denial during which they resist or reject a provider’s medical conclusion that the patient will not recover. Providers themselves may go through a similar period of denial, particularly when they know the patient well. Participants in these decisions may need to hear information several times before they can fully accept it. An appropriate decision-malungpace may require providers to post- pone discussions or to delay decision making temporarily. This delay provides everyone with sufficient time to assimilate new information, to relinquish unrealistic expectations (see Guideline 8, “Addressing Expectations”), to air disagreements (see Guideline 10, ”Aring Dis- agreements”),and to reach a consensus (see Guideline 12, “Generat- ing Agreement”). Managed care can bring a number of external pressures to bear on the pace of decision malung. Although effective use of facility resources is an important consideration in a managed care environment, providers should not permit it to hasten the pace of decision making inappropriately. On the other hand, undue delay may encourage denial by the participants in the decision-malung process or permit them to avoid their responsibilities, expending valuable resources (eg,the time and effort of ICU nurses). Undue delay also may unnecessarily prolong the physical, emotional, and spiritual agony of the patient and other participants in the decision-malung process. Nonmedical personnel (e.g., chaplains, clinical social workers) may be helpful in dispelling misperceptions and preparing participants for the patient’s death. In addition, early involvement at a time when the pace of decision making is not crisis driven may enhance the participants’ trust in each other. See Guideline 1, “Early Discussions,” and Guideline 4, ”Estab- lishing Trust.” 42 Resolving Disputes Over Life-SustainingTreatment

Guideline 8: Addressing ‘Expectations Wealth care providers should recognize and respond to the hopes and expectations of the participants in the decision-making process.

Hopes and expectations play a significant role in decisions about life-sustaining medical treatment. Hope is often crucial for a patient’s recovery. The patient’s belief that he or she will recover can improve the chances for and speed of recovery. If the patient’s recovery is unlikely, however, health care providers should pursue alternative goals, such as managing pain appropriately. Hope plays an important role in accomplishing these goals as well. Furthermore, to the extent that family members and members of the health care team hold similar hopes and beliefs, they are better able to support the patient. These hopes and beliefs are important for the well-being of both the patient and these other individuals. Unrealistic hopes and expectations, however, sometimes are associated with decisions about life-sustaining medical treatment. Typi- cally, participants in these decisions-particularly patients and family members-engage in a certain amount of denial and initially harbor unrealistic expectations. Dismissing unrealistic hopes or expectations too quickly may prompt patients and family members to cling to them even more firmly. As a result, another key to preventing disagreements at the bedside is to recognize when patients, family members, or members of the health care team are harboring unrealistic hopes or expectations (e.g., a last-ditch belief in miracles) and to address those beliefs appropriately. Consistently and patiently repeating relevant information gives participants adequate time to absorb and comprehend this information. Likewise, providing an opportunity to ask other providers to confirm this information will help dispel unrealistic hopes or expectations. A collaborative effort by the health care team is often an effective way to address unrealistic expectations. See Guideline 18, ”Collaborative Team Approach.” Conversations with patients or other participants, however, should take place under nonthreatening, nonjudgmental circumstances. Drawing out patient and family beliefs Preventing and Resolving Disagreements 43

and expectations gives providers an opportunity to apprise them candidly of various alternatives. Even when the provider is skeptical about the effectiveness of possible treatments, reasoned consideration of all the alternatives is more likely to result in a rational outcome. Authorizing a treatment alternative on a trial basis, even when the chances for improvement are mini- mal, permits ongoing evaluation of the patient’s medical status and treatment wishes, which initially may be uncertain or open to differ- ing interpretations. It also allows decision makers additional time to articulate their concerns about continuing or terminating life-sustaining medical treatment. Similarly, if a patient meets the protocol criteria for an experimental treatment alternative, offering such an alternative may diminish perceptions that the health care providers are not “trying hard enough” and may further establish the validity and reliability of the diagnosis, prognosis, and recommendations of the health care provider.

, Guideline 9: Full and Frank Information To the extent permitted by patient confidentiality and privacy, health care providers should provide participants in the decision-making process full and frank information about the patient’s condition.

Commentary

A related key for preventing or resolving disagreements at the bedside is for health care providers to recognize when they are withholding information from patients or family members unjustifiably. Providers are justifiably reluctant to squelch the hopes that the patient or family members have for the patient’s recovery. See Guideline 8, “Addressing Expectations.” In addition, individuals rarely regard the bearer of bad news with affection. The provider, however, has an ethical and legal responsibility to provide not only good news but also unfavorable information about the patient’s diagnosis and prognosis. Full disclosure of relevant information is necessary for informed decision making. Moreover, failing to provide this information may simply prolong the anxiety of patients or family members. Providing false 44 Resolving Disputes Over Life-Sustaining lkeatment hope also limits their opportunity to absorb this information and to engage in rational decision mahng. The health care provider should always be sensitive to how and when to provide this information. See Guideline 14, “Location of Dis- cussions.” To the extent permitted by patient confidentiality and privacy, however, the provider should disclose to the participants all available information about the patient’s condition. Particularly when exploring the wishes of the patient, the primary health care provider should have frank discussions about the patient’s medical condition and the treatment options. The provider also should offer to explain treatment recommendations, the basis for these recommendations, and how the provider reached them. Recognizing the existence of cultural variation in the manner by which individuals communicate, providers should explore with patients and families appropriate ways to convey infor mat ion. Some disagreement exists over whether the provider should discuss his or her own personal views on appropriate treatment. Some health care providers argue that these disclosures extend beyond medical advice and inappropriately interject the provider’s personal values into decisions that should reflect only the patient’s values. Other providers believe that the patient and other participants in the decision-malung process benefit from the insights that providers acquire from worhng with other patients. They argue that the patient and other participants in the decision-malung process often want and need these insights to inform their own decisions. Remaining “value-free” while giving advice is very difficult. At a minimum, the provider should indicate the bases for his or her recommendations and state when he or she is drawing upon personal views and values. In addition, the provider should be cautious not to impose his or her values or views upon the patient or other participants in the decision-making process.

Guideline 10: ~ingDisagreements Health care pr~~id~sshould recognize that airing disagreements can be beneficial. Preventing and Resolving Disagreements 45

Commentary

Chapter 2 discussed some of the sources of disagreements over life-sustaining medical treatment and their warning signals. Health care staff should recognize that disagreements do not signify failure. Indeed, good communication often involves differences of opinion. A certain amount of disagreement may ensure that participants in the decision-making process have explored all relevant issues, especially the patient’s wishes. An absence of conflicting opinions, in contrast, may indicate a failure to explore important interests or reflect a delay in holding needed discussions. Ultimately, the failure to air a disagreement fully can complicate subsequent discussions and the decision-malung process. The point is not that participants in the decision-malungprocess occasionally disagree. Rather, health care providers should focus on steps to prevent disagreements from arising inappropriately and, when they do arise, to resolve these disagreements or prevent them from escalating unnecessarily. The provider should candidly inform the patient and other participants in the decision-malung process when disagreements, including disagreements among members of the health care team, arise. Conflicts among staff members should not be covert, particularly since signs of staff disagreement often reveal themselves in subtle and de- structive ways. Moreover, the patient or the patient’s surrogate has the right to know about the various treatment alternatives that are the subject of staff disputes. The provider should take the opportunity to provide full and frank information, to discuss the bases of the disagreement, and to explore what steps, if any, the provider should take to resolve this disagreement. Disputes of this type also might be occasions to involve persons with specific expertise, such as those discussed in Chapter 4.

Guideline 1 1 : Impact of Diversity

Health care providers should recognize that race, culture, gender, religious belief, sexual orientation, age, mental or physical disability, socioeconomic status, or other characteristics may affect decisions about life-sustaining medical treatment. $6 ~esdvingDispnntes Over Life-Sustaining Treatment

Gomarmenta~ Another key to preventing and resolving disagreements at the bedside is to recognize that race, culture, gender, religious belief, sexual orientation, age, mental or physical disability, socioeconomic status, or other characteristics may affect decision malung. Participants dis- tort the decision-making process by the unjustified assumption of stereotypes or beliefs. Health care providers should recognize that the potential for these miscommunications and mistaken assumptions is widespread and may occur inadvertently and without conscious intent. Still, under certain circumstances, a provider may want to recognize and take into account these characteristics of the patient, the patient’s family, or members of the health care team. One’s values and beliefs, including those concerning life-sustaining medical treatment, are often associated with one’s cultural, social, or physical characteristics. Ultimately, however, the wishes of the patient as an individud are decisive. Indeed, a common source of conflict comes from differences in cultural beliefs concerning patient autonomy. Many cultures emphasize the value of the community over that of the individual. The threshold question is whether these characteristics have any relevant bearing on the decision-making process. For example, one question that may arise on rounds for a health care provider is whether to identify the patient by his or her race. Identifymg a patient as an African-American female provides different information from identifymg her as a white female. Although this information may be relevant to a discussion of the patient’s diagnosis and prognosis, unnecessary or inappropriate connotations also may be associated with it. The health care provider should consider in advance whether this characteristic provides important and relevant information. The health care provider also should consider what impact noting this characteristic is likely to have on the people to whom the information is being given and whether it might have unintended consequences that ought to be avoided. Although cultural, social, or physical characteristics do not invari- ably indicate the beliefs and views of the individual (and should not be presumed to so indicate), they can provide a starting point for exploring the beliefs and views of the individual. Diversity among participants in the decision-malung process may provide a signal for a need Preventing and Resolving Disagreements 47 -

for a more extensive exploration of the beliefs and views of the participants. The health care provider should also recognize that the provider’s beliefs or values may be affected by cultural, social, or physical characteristics. These characteristics may influence his or her understanding or interpretation of the patient’s wishes. Similarly, they can skew his or her perception of the views of other participants in the decision- malung process. The provider’s views may not be the same as those of the patient, the members of the patient’s family, or even other members of the health care team. People often assume incorrectly that oth- ’ ers think the same way as they do, particularly about very basic terms and issues such as death and dying. A failure to explore perceptual differences stemming from these characteristics can result in a failure to recognize miscommunications and misunderstandings. An exploration of the understandings and beliefs of participants in the decision-malung process may be incomplete if their cultural or ethnic backgrounds are not taken into account. In general, the participants need to explain to each other their understanding of the matters. When there is diversity among the participants, the provider should take special steps to respond to any “red flags” that suggest miscommunication, such as blank looks, head shakes, or a lack of verbal response. When this occurs, it may be appropriate for the provider to explore with the participants whether their respective baclgrounds affect the participants’ perspectives (including those of the provider) and whether they are influencing the decision-malung process. When miscommunications occur, the provider may want to take more affirmative steps, beginning with an explanation of why one’s cultural or social identification should be addressed. The difficulty of addressing disparate beliefs based on cultural differences runs in both directions between providers and patients and their families. Just as patients and family members from particular cultural or ethnic backgrounds sometimes feel intimidated by the different beliefs and values tEat exist in health care settings, providers often feel uncomfortable confronting these differences directly. The provider should not be afraid to broach the subject because of a fear of being disrespectful. Rather, he or she should recognize that part of the provider’s responsibility is to ensure that relevant information has been adequately conveyed and understood. Guideline U 2: Generating Agreement

Health care providers should attempt to generate agreement among paflicipaants in the decision-making process.

Although the patient or the patient’s surrogate retains exclusive decision-malung authority, other individuals-including family members and members of the patient’s health care team-generally participate in decision malung and are affected by it. This is especially true for patients who lack current decision-malung capacity, but it often applies for patients with decision-making capacity as well. During discussions about life-sustaining medical treatment, providers should let everyone speak and then look for common ground. Particularly when family members disagree about life-sustaining medical treatment decisions, providers should attempt to generate agreement among them. Generating agreement does not mean that everyone necessarily favors the decision, but that the participants are able to accept the decision. Often, a participant may simply want an opportunity to voice his or her opinion or concerns and is then prepared to accept the decision that is reached. For example, a member of the health care team may have reservations about a given decision, but will feel relatively comfortable in carrying out the decision once given an opportunity to air these reservations. Some health care providers believe that it is preferable to keep the number of participants in discussions to the fewest possible, as participation by a greater number may exacerbate the emotional trauma of the individuals involved. Proponents of this view assert that a determination of who should be involved should be made in advance. This can be done by assessing each individual’s respective connection with the patient and his or her likelihood of knowing what the patient’s wishes would be under given circumstances. It should be recognized, however, that within certain cultures and some families the circle of relevant participants is particularly large and an attempt to circum- scribe participation is itself likely to initiate dispute. Generally, family members should be given responsibility for determining when and how to limit participation. Preventing and Resolving Disagreements 49

Assembling all interested individuals in a single room and providing them with an opportunity to air the issues that concern them is one way to facilitate agreement. In some cases, providing such a forum may allow the participants a sufficient opportunity to express their views, release pent-up emotions, and accept decisions. In other cases, generating agreement may be more difficult. Rather than trying to agree on a specific decision, it may be easier for individuals to agree on an appropriate decision maker or a spokesperson for the family. This approach should be used with caution, however. Not everyone agrees that aslung the family to designate a spokesperson is a good idea. Some family members may believe that they are being left out of important discussions, other family members may not receive relevant information, the spokesperson may fail to adequately lead or promote discussions among family members, or the focus may change to ques- tioning or subverting the spokesperson. The result may be greater dis- cord among family members and greater disagreement about the decision that is reached. In seeking to generate agreement, providers should recognize that a family dispute may extend beyond disagreements over the proper treatment decision. A family dispute may reflect underlying family tensions that predate the discussions about life-sustaining treatment. In addition, when the head of a family faces death, the family may be working out a new internal hierarchy, a process that exacerbates family tensions. Although sometimes difficult, generating agreement reduces misunderstanding and miscommunication. It also may prevent subsequent disputes that will be even more difficult to resolve. The health care team should facilitate the family’s ability to work through the grief and other emotions and prevent unnecessary feelings of guilt or animosity over the patient’s death that might otherwise have a lasting effect on the family. See Guideline 17, “Involvement of Family Mem- bers. ” Although providers should avoid discussions that are excessively adversarial, a certain amount of disagreement may be necessary. In some instances, the provider should encourage it. See Guideline 10, ”Airing Disagreements.” Open disagreement may be therapeutic, particularly when it allows discussion of unexplored issues. Providers should be prepared to raise possible options, promote communica- 50 Resolving Disputes Over Life-Sustaining Treatment tion, reduce confrontation, and generally work to defuse potential disagreements among all individuals with an interest in a given decision.

Guideline 13: Patient’s Environment Health care providers should appropriately manage the patient’s C?UlVii-QtlHaaent.

Another key for preventing or resolving disagreements is to manage the patient’s environment in a manner that considers the needs and desires of the patient and the patient’s family. Family members often want to be present at the health care organization while decisions about life-sustaining medical treatment are being made or implemented. They may want to provide emotional support for the patient or to participate in the grieving process. They may want to obtain information about the patient’s condition or to ensure that the patient receives adequate attention and care from the health care staff. They may have a specific role in the decision-making process. Alternatively, they may simply want to be there because they or the patient believes it is appropriate for them to be present. Many families consider it imperative that loved ones attend a dying patient so he or she does not die alone. Some of these reasons reflect individual beliefs and preferences. Others are characteristic of the particular culture or group with which the individual identifies. In some cultures, for example, it is appropriate for only a very few close family members to be present. In others, a wide circle of family members not only expect to be present, but also expect to participate actively in the decision-malung process. Provid- ers should not assume automatically that an individual member of a culture or group holds the general beliefs and preferences of that culture or group, but one’s cultural affiliation can provide a starting point for exploring the beliefs and preferences of the individual. See Guide- line 11, “Impact of Diversity.” Preventing and Resolving Disagreements 5 1

Providers should facilitate options to allow a patient and the patient’s family to be together during the patient’s final hours. These options include providing flexible visiting hours, sleeping arrangements for family members, and as much privacy as possible. For example, providers may consider placing the patient in an otherwise unoccu- pied room and keeping staff presence to a minimum. On the other hand, some family members may not wish to be present for the patient’s final moments, and the patient may prefer it that way. Staff should not make family members feel obligated to be present. Generally, staff should minimize the use of medical technology during a patient’s final moments so the patient and loved ones do not feel separated from each other. Also, unless specifically requested otherwise, the staff should take responsibility for turning off any life- sustaining machinery, rather than permitting the family to do so, to minimize any guilt or responsibility the family might otherwise experience.

Guideline 14: Location of Discussions Health care providers should hold discussions in a quiet, private place where neither the health care provider nor the patient or family members will be distracted or interrupted.

Commentary

Health care providers have become more aware of the need for sensitivity in communicating unfavorable information about the patient’s condition to the patient and the patient’s loved ones. Insen- sitivity may exacerbate an already difficult situation. Not only can it add to the grief of the patient and the patient’s loved ones, but it also can produce hostility towards the provider. This, in turn, can lead to a breakdown in communication and loss of trust that ultimately may disrupt the decision-malungprocess and prevent the participants from reaching an amicable and appropriate resolution among themselves. Thus, discussions concerning life-sustaining medical treatment should take place in a quiet, private location where the provider, the patient, and family members can talk without interruptions. This holds true regardless of the setting in which the discussion takes place. If the meeting is held at the patient’s bedside, the provider can ask an ambu- latory patient roommate to leave for a time. If the patient is ambula- tory, providers should arrange for a private meeting space, preferably with a closed door and sufficient seating for all concerned individuals. They should make similar arrangements for meetings with family members in cases in which the health care providers have met previously with the patient or the patient’s condition precludes his or her participation in the discussions. The same considerations apply to discussions that tale place in an outpatient setting, such as the treating physician’s office. Providers should also minimize the sense of psychological distance between themselves and the other participants in the meeting. For example, if the participants are seated, the provider should also be seated. Removing physical barriers, such as desks and tables, can also minimize this sense of distance. Regardless of the physical setting, providers should allow sufficient time to answer questions. Also, the provider should identlfy the means by which patients and family members can request subsequent meetings or raise questions that later arise. The provider should encourage subsequent meetings and questions as needed. See Guideline 5, “Encouraging Questions.” If the need for a subsequent meeting is apparent at the time, the provider should set a specific time and place for that meeting.

Guideline 1 5: Mnnnnecessary Transfers Health care providers should avoid unnecessary transfers or mQWiIl@UI8Qf dying patients.

Health care providers should promote stability and continuity of care for dying patients. Unless transferring a patient to another unit or facility will improve the patient’s condition or relieve the patient’s dis- tress, providers should avoid unnecessary transfer or movement. Trans- ferring the patient to a health care setting with higher levels of medical technology tends to isolate the patient from his or her loved ones. Thus, staff should not transfer a terminally ill patient to an Intensive Care Unit (ICU)unless necessary to remedy a medical condition that Preventing and Resolving Disagreements 53 staff cannot address adequately in the patient’s current setting. Health care providers should exercise similar caution before moving a dying patient from a long-term care facility to an acute-care facility. Staff should explain to family members the reasons for not transferring patients and should take steps to provide palliative care. These explanations may alleviate family members’ fears that the staff is ne- glecting the patient or that family members are failing to exhaust all possible means to respond to the patient’s health care needs. Avoiding unnecessary transfers also prevents disagreements due to changes in the key decision-malung participants and to miscommunications about the patient’s previously established treatment wishes. Transfers sometimes inject into the decision-making process a new group of providers who know little about the patient, the patient’s wishes, the patient’s loved ones, the content of prior discussions, and the nature of decisions that have already been made. In some instances, the patient’s managed care plan or other financial arrangements may be responsible for the proposal to move or transfer the patient. When the provider considers the move or transfer to be unwarranted, he or she should challenge the proposal. Sometimes, however, a move or transfer can be an appropriate means to resolve a disagreement. For example, a patient may be properly transferred when the transferring facility is unwilling to accede to the treatment request of the patient or the patient’s surrogate, but the receiving facility will comply with the request.

Roles of the Participants

Guideline 16: Level of Interactions Health care providers should establish and maintain appropriate boundaries for interacting with patients and family members.

Commentary A certain degree of availability and empathy is appropriate and necessary to establish a trusting relationship and to promote discussion of relevant issues. In some instances, however, it may be neces- 54 RescPMng Dispnues Over Life-Sustaining Treatment sary to limit interactions between the health care provider and the patient or family members. Providers can do only so much. In addition, constant demands from patients and family members may reflect their unwillingness to accept the patient’s death. The provider should supply needed information and support without losing the ability to exercise professional judgment. By establishing boundaries on these interactions, the provider can provide necessary care and support, ensure his or her own ability to provide appropriate responses and advice, and help guide and facilitate the decision-malung process. The boundaries should reflect a careful consideration of the context in which decisions about life-sustaining medical treatment are made. Some limitations on interactions with patients and family members will extend to all cases. For example, the level of interaction should never endanger the well-being of the patient or compromise the ability of the providers to perform their jobs. Likewise, it may be appropriate for a provider to decline social invitations to the patient’s or a family member’s home. Nevertheless, preestablished boundaries that appear rigid or unre- sponsive to patient and family needs are likely to increase the potential for disagreements. To find a comfortable balance, providers should assess thoughtfully how best to satisfy their personal and professional obligations to the patient without compromising their ability to meet the needs of this and other patients. In addition, providers may encourage patients and family members to identify the appropriate circle of individuals to be involved in the decision-making process. They may encourage patients and family members to designate a spokesperson. This individual will be primarily responsible for receiving information from health care staff, for passing information to other interested persons, and for soliciting questions about the patient’s care and posing them to the appropriate health care providers. Providers should not neglect the wishes, fears, and perceptions of patients and family members, however. Some providers are uncomfortable engaging in discussions about life-sustaining medical treatment. Clinical social workers and pastoral care staff often are adept at broaching difficult topics. Providers may wish to seek their assistance in initiating discussions of this type. For other providers, the press of daily responsibilities may male it difficult to find the time to conduct Preventing and Resolving Disagreements 55

.- these discussions. Nonetheless, these interactions are invaluable. They enable the provider to honor the patient’s wishes, to accommodate the J interests of the patient and family members appropriately, and to become aware of and defuse potential disputes. By establishing appropriate boundaries with patients and family members, providers can interact without compromising their ability to fulfill their obligations.

Guideline 17: Involvement of Family Members Health care providers should identify the patient’s family members and help them determine what role they can and should Play.

Commentary

Health care providers should identify the patient’s family members and help them determine their role. A part of this process involves identifying members of the patient’s “family.” Kinship is not the sole factor defining a family. A patient may be estranged from blood relatives or may have outlived them. Thus, the patient may be closest to someone unrelated by blood or marriage. Indeed, some patients may prefer to exclude certain individuals from participating in decision malung, regardless of close Inship. In terms of participating in the decision-malung process, the patient’s ”family” consists of those individuals who know the patient well, who have the patient’s trust, who know the patient’s treatment wishes, and who have the patient’s best interests at heart. A useful, although not conclusive, method of identifying the patient’s family is to identify the individuals who spend the greatest amount of time with the patient or who were closest to the patient before admission to the health care organization. Temporal and physical proximity are also useful indicators. In light of the mobility of today’s society and the availability of long-distance communication, however, health care providers should not exclude’people simply because they do not live close by or are not physically present in the health care organization. Whenever possible, providers should ask the patient to identify persons that he or she considers family members. Another source of 56 Resolving Disputes Over Life-SustainingTreatment information about the patient’s family are those individuals who regularly visit the patient or otherwise show a significant interest in the patient’s welfare. Providers should ask these individuals to identify people who would want to be informed of the patient’s progress or to participate in discussions pertaining to the patient’s treatment. It may also be useful to inquire at the patient’s last known residence about individuals with whom the patient regularly communicated and had close relationships. Providers should consult the patient, whenever possible, about the role family members should play in the decision-malung process. A patient with current decision-malung capacity or the patient’s surrogate may choose to exclude or limit the role of family members. The provider, however, may recommend greater participation. At the very least, providers should encourage the patient or the patient’s surrogate to discuss the matter with affected family members. Broadening the circle of family members and enhancing their role often provides greater support for the patient, considers the interests of all concerned individuals, and permits a reasoned decision-malung process. As a result, interested participants are more likely to work together and accept decisions. For many individuals-such as family members-participating in decision malung will ease the grieving process. If the patient lacks decision-malung capacity and a surrogate has not been appointed, family members can play a particularly important role in conveying to the health care team the wishes and interests of the patient. Again, participation by a relatively broad circle of family members may be very beneficial and appropriate, although in some instances, limited participation will be necessary. See Guideline 13, “Patient’s Environment.” The patient and family members, rather than the providers, are responsible for identifymg and inviting appropriate individuals to participate in decision making. This task should be done as soon as possible, rather than postponed until difficult decisions must be made. However, providers can encourage and facilitate these efforts. When disagreements arise concerning who should be involved and what role they should play, the patient or the patient’s surrogate and the family are responsible for resolving them. The health care organization, however, can assist in this process by making available staff with expertise in dispute resolution. These staff members also should be available Preventing and Resolving Disagreements 57

when family members disagree with the decisions of the patient or the surrogate regarding family member participation. Their focus in these instances, however, should be on helping family members understand or accept the patient’s decisions. When an unbefriended patient lacks decision-malung capacity, a staff person should contact any individuals who might how the patient and who can inform providers about the patient’s preferences about life-sustaining medical treatment (e.g., staff or fellow residents at a nursing home]. If these efforts are unsuccessful, state law may require judicial appointment of a guardian for the patient. Although decision malung for unbefriended patients occurs relatively infrequently, it continues to be one of the most difficult problems that providers face. At the heart of the matter is a fundamental tension between protecting the rights and interests of individuals who lack advocates and establishing an effective mechanism for patient decision making. Where permitted by state law, a number of localities have experimented with alternatives to court-appointed guardianship. As a policy matter, however, a separate, more formal, and objective process is a better solution for decision making on behalf of unbefriended patients than deferring to the judgment of health care providers who are directly involved in the patient’s care. Judicial appointment of a guardian for the patient remains the most common method of decision making for unbefriended patients. In many localities, however, the lack of available guardians and the difficulty of securing a guardianshp can bring decision malung to a standstill. Some localities require that guardians for unbefriended patients be drawn from either a public agency or a quasi-public pool of individuals, such as members of the local bar association. Although this solution often increases the number of available guardians, it does not necessarily ensure that guardians have adequate expertise in medical decision malung. Providers have a responsibility to contribute to systemic reforms to improve decision-malung mechanisms for unbefriended patients. In some jurisdictions, health care organizations may work with the local judiciary to expedite the guardianship process for unbefriended patients. In others, they may support legislative proposals to improve the functioning of the guardianship system. Enlarging the pool of eli- gible guardians, providing greater resources to guardians, enhancing 58 Resolving Disputes Over Life-Sustaining akeatrnent education and training, and increased monitoring of the services they provide are some of the more common reforms re~ommended.~~

Guideline 18: Collaborative Team Approach Health care providers should employ a collaborative and coordinated approach within the health care team for responding to the needs and requests of patients and family members.

Another ley for preventing or resolving disagreements at the bedside is to employ a collaborative and coordinated approach by the health care team. Involving the entire health care team in discussions about life-sustaining medical treatment expands the expertise and support available to patients and family members. It also augments the team’s ability to respond to those needs and requests. The health care team should meet regularly to discuss life-sustaining medical treatment issues that arise while caring for patients. The actual composition of the team depends on the setting in which the patient care takes place. In an acute-care setting, the team may consist of a wide range of providers including physicians of various specialties, nurses, clinical social workers, and others. In other settings, such as long-term care or home care, the range of providers generally is more limited. The actual composition of the team is less important than the participation of all staff members who provide patient care. Providers should identify any special issues in advance to give team members an opportunity to collect their thoughts and ideas about pos-

29 Commission on National Probate Court Standards, National Probate Court Stan- dards (Williamsburg,Va.: National Center for State Courts, 1993);Erica E Wood, State- ment of Recommended Judicial Practices (Adopted by the National Conference of the Judiciary on Guardianship Proceedings for the Elderly) (Washington:Administration on Aging, Office of Human Development Services, 1986);American Bar Association, Commission on Legal Problems of the Elderly, Recommended Guidelines for State Courts Han&ng Cases Involving Elder Abuse (Chicago: American Bar Association, 1996). Preventing and Resolving Disagreements 59

sible problems. These meetings permit the team members to pool their wisdom in addressing emerging problems, keep all members informed of the patient’s status, and allow the team to agree upon a consistent approach in addressing the patient’s and family’s needs. In general, the collaborative approach among the team members ensures appropriate responses to potential disagreements. The health care team also can collectively designate a staff member to communicate with patients or family members.30The staff person selected should demonstrate the ability to provide the patient and family members necessary information, to communicate effectively with them, to be readily accessible, and to communicate relevant information to the other members of the health care team. The team can also designate a team member to conduct discussions about life- sustaining medical treatment with the patient or family members, document these discussions in the patient’s chart, and ensure that all members of the health care team are aware of these discussions. These meetings also provide a useful forum for the team to resolve disagreements among its own members, preparing them, in turn, to meet the concerns of the patient and the patient’s family. Consulta- tions with outside experts to address questions of prognosis, the quality of life after various courses of treatment, potential conflicts of interest, or ethical or legal questions may also be helpful. The treatment team also can hold formal meetings with family members. Com- munication among the various individuals concerned with the care and well-being of the patient can reduce the likelihood of misunderstandings. A collaborative approach among the members of the health care team can lessen the need to involve additional mechanisms for resolving disagreements over life-sustaining medical treatment decisions, such as those described in Chapter 4.

30 Rotations within a given group of physicians that cover a service can cause confusion over whose responsibility it is to discuss life-sustaining treatment issues with a given patient. One solution is for the physicians to agree in advance on who is personally responsible for conducting discussions and for placing the content of those discussions in the patient’s chart. 60 ResoMnng Disputes Over Life-Sustaining ’Ikeatment

plicatimg Hss

Guideline B 9: Ethical and Legal Limits on Decision Making Health care providers should indicate at the earliest possible time if ethical or Begal constraints prohibit honoring certain patient Or family WqUes&.

COIR2HaalennU6ldauyr

Occasionally, ethical or legal considerations will compel the health care provider to refuse to accommodate patient or family requests concerning life-sustaining medical treatment. To prevent an appearance that these refusals are ad hoc, random, or discriminatory, the provider should indicate at the earliest possible time the existence of such ethical and legal constraints and their effect. Preferably, these constraints should be incorporated within the formal policies of the organization and communicated to patients and surrogates prior to admission.31As an example of such a refusal, a health care provider may consider it ethically inappropriate to withhold a blood transfusion from a child of a Jehovah’s Witness. Establishing this position clearly and early may prevent problems before they occur.32 A refusal to accommodate requests involving life-sustaining medical treatment may be personal or institutional in nature. When the basis for the refusal is institutional, health care staff should provide the patient or the patient’s surrogate and family members with a copy of the relevant health care organizational policy. When the basis is personal, the provider should consider whether he or she finds the

31 Federal law requires health care organizations to inform patients of their rights at the time of admission. Patient Self-DeterminationAct, 42 U.S.C. 5 1395cc(a)(1) (1993).

32 The Uniform Health-Care Decisions Act requires health care facilities to provide advance notice if there is a religious or ethical reason why they will not perform certain procedures and imposes an obligation to transfer the patient to another facility willing to comply with the patient’s instruction or decision. VHCDA 5 7, 9 Part 1 U.L.A. 239 (Supp. 1996). Preventing and Resolving Disagreements 6 1 procedure to be legally impermissible, professionally unacceptable, or personally offensive. If the provider objects on legal grounds, he or she should verify the accuracy of this conclusion with legal counsel for the health care organization. If the objection is based on professional ethics, the provider should verify the accuracy of this conclusion with the organization’s ethics committee or another qualified group or individual. If the objection is personal, the provider should verify, by seeking a second opinion from another provider, that refusing to accommodate the patient or family request does not compromise the patient’s best interests. The provider should explain the basis for his or her refusal to the patient and family. These discussions may help each side to understand the other’s views and to reach an accommodation. If no accommodation is possible, the providers should arrange, whenever possible, to transfer the patient to another provider or organization that will honor the request.33The provider should explain that transfers do not represent a personal rejection of the patient or family members. Rather, these transfers are a time-honored means within the health care professions to resolve these dilemmas.

Guideline 20: Management of Pain and Suffering Health care providers should actively manage the pain and suffering of patients and should not be inhibited by inappropriate fears of legal liability for doing so.

Commentary Pain, suffering, and the fear of pain and suffering can have a significant effect on decisions about life-sustaining treatment. Patients and family members often fear that the patient will experience intrac-

33 On rare occasions, a health care provider may resist a transfer because the request is considered ethically or morally unacceptable or clearly in violation of the law. Alter- natively, another health care provider or facility may not be available to accept responsibility for the care of the patient. In such cases, the matter should be referred to the ethics committee or consultant [see Chapter 4j. 62 Resoking Disputes Over Life-Sustaining Treatment table pain and suffering. Overwhelming pain and prolonged suffering can cause sleeplessness, loss of morale, fatigue, irritability, restless- ness, withdrawal, depression, and other serious problems for the patient.34Even the anticipation of pain and suffering can cause high levels of anxiety and anguish. For example, the prospect of being ”trapped” on an Intensive Care Unit, with death the only means for leaving the unit, can create great anguish for the patient. The fear of extreme pain and suffering or the belief that they are unavoidable can lead to suicide or otherwise shorten the patient’s life. Health care providers should manage their patient’s pain and suffering levels, recognizing that patients vary considerably in their tolerance of pain and suffering. Also, the pain management needs of patients may vary over time, and health care providers should be prepared to alter the dosage of pain medication accordingly. Providers are under- standably cautious about prescribing potentially addictive drugs for their patients. Fear about the long-term effects of pharmaceutical ad- diction, however, is greatly misplaced when treating terminally ill patients. Providers should prescribe palliative medication in sufficient dosages to manage pain effectively. Deterioration of the patient’s condition may necessitate more aggressive pain management, as well as mental health counseling or other types of support. On the other hand, if pain medication causes significant disorientation or drowsiness, a patient may wish to decrease the level of medication to hlly participate in or experience a special event. The patient may also desire to be better able to interact with a loved one who has come a great distance to visit him or her. Failure to address adequately the patient’s wishes regarding pain management is clinically inappropriate and damaging to both the patient’s and the family’s confidence and trust in the provider. In turn, this can create the potential for subsequent disputes over both pain

34 See American Nurses Association, “Position Statement on Promotion of Com- fort and Relief of Pain in Dying Patients,” in Compendium of Position Statements on the Nurse’s Role in End-of-LifeDecisions (Washington:American Nurses Association, 1992), 7. Preventing and Resolving Disagreements 63 management and other issues that appear, at first glance, unrelated to pain management. Consequently, providers should inquire about the patient’s pain and suffering and the patient’s wishes regarding pain management. In addition, providers should carefully explain to the patient and family members the steps taken or available to manage pain and suffering. These discussions allow providers to prevent unnecessary anxiety, dispel or diminish unfounded fears, and avoid need- less disputes. Providers should not overlook the effect that a patient’s pain and suffering may have on family members. Family members are deeply affected when a patient experiences high levels of pain and suffering, particularly if they believe that steps could be taken to reduce this pain and suffering. A perception that a patient is being under- or overmedi- cated may lead family members to conclude that staff decisions are being driven by administrative convenience or that health care providers are not adequately fulfilling their responsibilities. Providers may also disagree about appropriate pain management. Knowing that a patient is in considerable pain and suffering can be very difficult for staff who care for him or her. Staff may conclude that the health care provider is failing to respond to the patient’s needs. Initially, health care staff should attempt to resolve such disagreements among themselves without involving the patient or family. When such efforts fail, the bases for the disagreement should be disclosed to the patient or family. The assistance of an ethics committee or consultant may be helpful (see Chapter 4). See Guideline 10, “Airing Disagree- ments .” Careful attention to the dosage levels of pain medication is essen- tial to proper pain management. Tolerance to pain medication often occurs after prolonged use. Very high doses of medication (exceeding the usual recommended dosages for patients of similar age and weight) may be needed to maintain adequate pain control. In addition, pain medications often have sedative or respiratory depressant side effects. Such side effects should not be an overriding consideration in the use of pain medications for dying patients as long as their use is consistent with the patient’s wishes. In general, increasing the dosage level of medication to achieve adequate symptom control-even when the secondary effect may be to hasten death-is ethically justified when this practice is in accord 64 Resolving Disputes Over Life-Sustaining Treatment with the patient’s wishes.35 The use of palliative medicine in this manner is a legitimate part of good patient care. No provider has ever been prosecuted successfully or held civilly liable for such treatment.36Nor should providers confuse effective palliative care, in which the primary goal is relieving the patient’s pain and suffering, with physician- assisted suicide or euthanasia, in which the primary goal is causing the patient’s death. Even states that expressly prohibit physician- assisted suicide recognize palliative medicine as part of the regular standard of care for terminally ill patients.37Providers should not allow misplaced fears about legal liability to inhibit their use of pallia- n tive care. I

Guideline 2 1 : Medically Futile Treatment

Wealth care p~~idersshould not use the phrase futi/e treatment I

in a way that avoids discussion about the value of a particular I -- treatment.

35 See, for example, National Conference of Catholic Bishops, “Ethical and Reli- gious Directives for Catholic Health Care Services” (1994); American Medical Asso- ciation, Council on Ethical and Judicial Affairs, “Decisions Near the End of Life,” JAlMA 267 ( 1992):2229; New York State Task Force on Life and the Law, When Death is Sought: Assisted Suicide and Euthanasia in the Medical Context (May 1994).

36 See Alan Meisel, The Right to Die, 2d ed., 2 vols. (NewYork: Wiley Law, 1995), sections 9.38 and 18.18.

37 See Fla. Stat. Ann. 5 458.326(3) (Supp. 1996); Minn. Stat. Ann. 5 609.215(a) (Supp. 1996); Tenn. Code Ann. 5 39-13-216(b)(2)(Supp. 1995); Tex. Rev. Civ. Stat. Ann. art. 44951~)(Supp. 1996).See also State v.McAfee, 385 S.E. 2d 651 (Ga. 1989) (“right to be free from pain . . . is inseparable from his right to refuse medical treatment”);McKay v.Bergstedt, 801 P2d 61 7 (Nev. 1990) (providing immunity to a physician because use of strong doses of analgesic medication to relieve pain may inadvertently end the patient’s life). In addition to state statutes that provide immunity to health care providers for use of palliative medicine, two recent federal court decisions have held state statutes prohibiting physician-assisted suicide to be uncon- stitutional. See Compassion in Dyingv. Washington, No. 94-355534 (9thCir. Mar. 6, 1996);Qdv. Vacco, No. 95-7028 (2d. Cir. Apr. 2, 1996),petitionfor cert. filed (U.S. May 16, 1996) (No. 95-1858). Preventing and Resolving Disagreements 65

Commentary The ongoing debate over “medical futility” stems in part from a legitimate belief by some health care providers that patients and surrogates sometimes demand life-sustaining medical treatment for patients whose physiological condition does not warrant this treatment. Indeed, when patients or family members make inappropriate demands for life-sustaining medical treatment, health care providers may, and often should, voice their di~agreement.~~In its strictest sense, the phrase futile treatment refers to life-sustaining medical treatment that will not work-that is, will not achieve the physiological end for which it was designed. However, the term can also encompass social or personal judgments by health care providers that a given treatment, even though effective in the physiological sense, is not appropriate. The point of this guideline is not to resolve the debate over medical futility. Rather, its purpose is to remind health care providers that they should not use language to mask these underlying judgments or to avoid discussing the advantages and disadvantages associated with certain types of treatment with patients and their families. The term futile accurately describes the effect of some forms of treatment on some physiologic conditions. For example, penicillin does not cure cancer and therefore is futile in treating it. This is an accurate use of the term futile. Using it in this manner does not involve value judgments by the health care provider. Rather, it is a clinical determination that providers are uniquely qualified to make. Nevertheless, there are relatively few instances when the patient’s surrogate or family members will request life-sustaining medical treatment that is futile in this very literal sense of the term. A more common scenario involves a request by the surrogate or family for life-sustaining medical treatment in cases in which there is little or no likelihood that the patient’s medical condition will improve significantly. For example, ventilator support for a patient in a persistent vegetative state often is very effective for sustaining the

38 See, for example, Robert D. Truog, Allan S. Brett, and Joel Frader, “The Problem with Futility,’’ The New England Iournal of Medicine 326 (19921: 1560. 66 Resolving Disputes Over Life-Sustaining Treatment patient’s life, thus demonstrating to the surrogate and family members that this treatment is not futile. From the viewpoint of the treatment team, on the other hand, ventilator support is futile with respect to restoring the patient’s mental functioning. Using the term in this fashion merely masks a judgment by the provider about the value of keeping alive a patient who will never regain consciousness. In es- sence, the term futility in these cases implies that continuing life-sustaining medical treatment places an excessive burden either on the patient or on society given the expected benefits. Incorrectly labeling a treatment as futile can cause confusion and mistrust in the decision-malung process. Some providers fail to explain the actual bases for their recommendations. Others use the term to transfer decision-malung authority from the person requesting life- sustaining medical treatment to someone who the provider believes is more objective about the value of the requested treatment. The use of the term should be confined to medical statements, applied precisely, and limited to treatments or procedures that will not achieve the physiological end for which they are designed. Providers should not use the term for the much larger class of considerations that are often implicit in life-sustainingmedical treatment decisions. In particular, they should not use this term as a lever to encourage what they consider an appropriate decision, but which has nothing to do with the actual futility of the proposed treatment. Health care organizations have legitimate contributions to make in the formulation of social policy concerning life-sustaining medical treatment. To this end, some organizations have developed institutional policies, such as eligibility criteria for organ transplants or lud- ney dialysis, that clearly state their criteria for authorizing life-sustaining medical treatment. These policies are very useful for defining the organization’s available treatment options and for retaining authority over the criteria for malung treatment available to patients. Providers should be honest and forthright both about the existence of these policies and about their underlying rationale, however. They should not obscure the legitimate rationale for these policies by using the term futihty to characterize the treatment options. Preventing and Resolving Disagreements 67

Guideline 22: Costs and Resource Allocation Health care providers should address treatment cost issues so that participants in the decision-making process properly understand and consider them.

Commentary

Health care costs are often a significant consideration in decisions about life-sustaining medical treatment. Although the financial expense of life-sustaining medical treatment is a prime component, the costs of treatment also include the inconvenience, time, and difficulty associated with obtaining or receiving the treatment; the emotional, psychological, and physical burdens that the patient or family members may experience; and the scarcity of the treatment and whether it makes these resources unavailable to other patients. Some patients may consider costs when developing advance directives or discussing their provisions with surrogates. The provider should encourage participants in the decision-making process to articulate their concerns and to explore the full range of potential costs, including personal and psychological costs. For family members, particularly those with continued responsibility for the patient, the costs of providing long-term care may be considerable both in financial and psychological terms. Although family members are often hesitant to talk about them expressly, these concerns often have a significant influence on the decision-malung process. Consequently, providers should encourage family members to state their fears and concerns rather than ignore them. Providers should also indicate to patients and family members that financial costs are a legitimate concern and should be openly discussed in each case. Financial considerations affect patient and family decision malung-and not necessarily in inappropriate ways. These considerations, however, should not be an unacknowledged factor driving the decision-malung process. Rather, to place financial costs in their proper perspective, providers should discuss their effect on decision malung in conversations with patients and families. If possible, providers should help alleviate patient and family concerns about costs, 68 Iwesolviwg Disputes Over Life-SustainingTreatment

such as identifying supplemental financial resources to cover treatment costs. Providers should not incorporate financial considerations inappropriately in recommendations about life-sustaining medical treatment. Providers should limit their recommendations to issues falling within their medical expertise. Providers may appropriately address factual questions associated with financial costs within their knowledge, such as providing estimates of costs and whether these costs are covered by the patient’s insurance plan. Based on their insights from participating in prior decisions, they may convey what other individuals have done or considered in similar circumstances. Providers, however, should resist providing directive counseling and personal opinions on what, if any, role the financial costs of treatment should have in treatment decisions. -- If a patient or family member appears to have an incorrect or uninformed perception of the financial costs or is overemphasizing the role of financial costs in treatment decisions, the provider should lead a candid discussion to remedy the misunderstanding. When misperceptions continue or a decision is clearly unreasonable, the provider should request the assistance of the health care organization’s ethics committee or ethics consultant (see Chapter 4). For example, family members may appear to be disregarding the patient’s treatment wishes because of their focus on the financial cost of treatment, including concerns that continued treatment will deplete the patient’s estate. Widely used methods of cost containment and common features of managed care, such as utilization review and capitation, respec- tively, also have a potential effect on treatment decisions that may prompt disputes. For instance, a patient’s care may be affected by the refusal of a utilization review body to authorize payment for a desired treatment. Indeed, a patient’s health care plan contract may exclude coverage for certain treatment. More subtly, the treating physician may not apprise the patient of an expensive treatment or may not authorize it. Capitation arrangements or physician compensation plans may influence providers’ ability to exercise discretion. For example, providers may incur financial penalties for intensive use of plan resources, such as inpatient treatment or referrals to specialists. Providers should recognize that patients and their families may suspect that financial considerations underlie their treatment recom- Preventing and Resolving Disagreements 69 mendations, thus causing distrust and miscommunication. Indeed, many of these suspicions are reasonable. Financial solvency is a legitimate concern of health care organizations. Financial considerations- for example, the treatment alternatives covered under a given health insurance plan or the amount of discretion that a "gatekeeper" may exercise in malung referrals to specialists-create conflicts of interest for providers that may unreasonably interfere with the best interests of their patients. Providers should recognize these conflicts and discuss them explicitly with patients and family members. Providers should also educate themselves about conflicts that are barred by law or condemned as a matter of ethics.39

39 See, for example, American Medical Association, Council on Ethical and Judicial Affairs, "Ethical Issues in Managed Care," IAMA 273 [ 1995): 330, on the obligations of both individual providers and health care organizations.

Roles and Responsibilities of Ethics Committees and Consultants 7 1

The Roles and Responsibilities of Ethics Committees and Consultants

The initial efforts of the patient or surrogate, the patient’s close friends and family, and the patient’s health care team will not always resolve issues involving life-sustaining medical treatment. Sometimes, positions are sharply drawn and a disagreement ensues. In other instances, the participants simply feel uncertain about the right way to proceed. Examples of various disagreements or uncertainties are provided in Chapter 2. Even after following the suggestions offered in Chapter 3, the participants still may be unable to resolve some issues. Health care organizations should have additional individuals or groups with special expertise available to assist persons who are strug- gling with a life-sustainingmedical treatment decision. Many of these individuals or groups already are found in virtually all health care organizations. In hospitals, for example, disagreements about treatment sometimes reach the head of a department or chief of medicine. Likewise, a concerned nurse may raise concerns up through the chain of command to the director of nursing. When issues of liability or other legal problems arise, providers may call upon the organization’s administration, legal counsel, or risk management office. Patients and their families may turn to a patient representative, patient advocate, or ombudsman. Anyone involved in a disagreement may seek help from a chaplain. Long-term care facilities and organizations providing outpatient care, such as home health care, increasingly have some of the same individuals and groups plus some specialized individuals and groups such as case managers or residents’ committees. Managed care systems also have some specialized committees, such as grievance committees, to contest benefits denial. 72 Resolving Disputes Over Life-Sustaining Treatment

This list of specialized individuals and groups is purely illustra- tive. Each organization should have a variety of individuals or groups available to serve its particular needs. Different problems will require creative use of these individuals and groups, often using them in conjunction with one another. Regardless of the formal title of the group or individual with these responsibilities, the guidelines in this chapter may be helpful for resolving disagreements over life-sustaining medical treatment. When a case raises ethical issues-particularly when the individuals immediately involved in the patient’s care have been unable to resolve disagreements-the health care organization should make available additional individuals or groups to address those issues.4oOver the past 20 years, health care organizations increasingly have turned to ethics committees and, more recently, to ethics consultants. The guidelines in this chapter use the phrases etkucs committee and ethics consultants to refer to the individuals or group designated by a health care organization to address issues involving life-sustaining medical treatment. Readers should recognize, however, that health care organizations may assign this responsibility to another individual or group. These guidelines may be useful to them as well. The situations in which an ethics committee or consultant can be helpful rarely are solely philosophical debates. Although the term ethics committee or ethics consultant implies a primary concern with “ethical” matters, these groups and individuals typically become involved in a wide variety of disputes, including those precipitated by poor communication or misunderstandings about factual issues. Commentators generally agree that ethics committees and consultants can perform three basic functions-educating about ethics, formulating relevant policies [e.g., on DNR orders, on transfusion of Jehovah’s Witnesses], and consulting on cases, Considerable debate

40 Many health care organizations will be able to make “in-house” individuals and groups available; others will have to look outside of the organization, perhaps to community ethics committees and university ethics centers. Roles and Responsibilities of Ethics Committees and Consultants 73 remains, however, about the third function-in particular, about the people who should conduct case consultations, the purposes of these consultations, and the manner of conducting them.41Most ethics committees and consultants see their primary purpose as providing advice on ethical issues. Sometimes their advice will facilitate dispute resolution, sometimes not. Others see the purpose of ethics committees and consultants as counseling the participants to improve communication. Still others envision a third purpose of mediation or dispute resolution. Perhaps the most contentious issue is whether committees or consultants should merely advise the participants or should provide more directive recommendations. On the question of who should perform case consultation, disagreement arises about the relative merits of using an individual consultant, a subset of the ethics committee, or the committee as a whole. On the question of how consultation should proceed, a lively debate involves issues such as who may present a case, who should participate and in what fashion, what records should be kept, and to whom the outcome should be communi~ated.~~No matter how an organization resolves these issues, it should ensure the systematic consideration of the ethical issues of patient care, especially those involving life-sustaining medical treatment. This chapter addresses the responsibilities of health care organizations for establishing, structuring, and supporting the individuals and groups who assume responsibility for addressing issues involving life- sustaining medical treatment. The chapter also sets forth guidance about how these individuals and groups should undertake this responsibility.

41 John A. Robertson, “Ethics Committees in Hospitals: Alternative Structures and Responsibilities,” Quuhty Review Bulletin 10 (1984):6; Susan M. Wolf, “Ethics Com- mittees and Due Process: Nesting Rights in a Community of Caring,” Maryland Law Review 50 (1991):798.

42 For an overview of these issues, see Judith W. Ross et al., ,Health Cure Ethics Committees: The Next Generation [Chicago:American Hospital Publishing, 1993). 74 bxdvinng Disputes Over Life-Sustaining Treatment

spcdnsibilities of the Health Care Organization

Guidehe 23: Groups or Individuals to Resolve Disagreements The health care organization should develop and support specialized groups and individuals, such as ethics committees or ethics consultants, to resolve disagreements over life-sustaining medical treatment.

Health care decisions often generate disagreement. The level or quality of care, the responsibility for that care, or the charges or reim- bursement for that care all provide potential sources of disagreement. As a matter of good management or in compliance with the requirements of state law, health care facilities often have in place groups or individuals-such as grievance committees, patient advocates, residents’ committees, and ombudsmen-for resolving these disagreement~.~~These groups and individuals may or may not be appropriate for addressing issues involving life-sustaining medical treatment, and relying on an ad hoc approach may not be sufficient. Organizations should have means to address ehcd issues in patient care, especially those involving life-sustaining medical treatment.44

43 See, for example, N.Y. Pub. Health Law § 2972 (McKinney 1995);Vt. Stat. Ann. tit. 33, 1972 (1995);Minn. Admin. Code R. 4680.0100 to ,1300 (1994) (everyhos- pital and outpatient surgery center must provide a grievance mechanism to process and resolve patient grievances); Minn. Admin. Code R. 4685.1700 (1994) (a health maintenance organization must provide an internal complaint system and impartial arbitration); Minn. Admin. Code R. 9050.0030, .lo70 (1994)(a home for veterans must provide a grievance mechanism for patients); Minn. Admin. Code R. 9505.0295 (1994) (establishing a grievance committee for determinations of eligibility for home health services);N.Y. Comp. Codes R. &Regs. tit. 10, 98.14 (1994)(a health maintenance organization must provide a written grievance or complaint procedure, including an appeals procedure).

44 Joint Commission on Accreditation of Healthcare Organizations, Standard RI.4 (Patients’Rights and Organizational Ethics ),JCAHO Standards Manual. Roles and Responsibilities of Ethics Committees and Consultants 75

Most ethics committees and consultants strive simply to facilitate discussions, leaving the decisions to the parties involved. Other committees articulate applicable principles and let the patient or the patient’s surrogate, in consultation with the patient’s family or friends #andhealth care team, derive possible options and conclusions. Still others generate options, leaving the ultimate choice to the patient or the patient’s surrogate, again in conjunction with nonsurrogate family and friends and the health care team. Finally, a few ethics committees or consultants issue specific recommendations, similar to those provided by medical consultants. The ethics committee or consultant will have to decide what role is appropriate given the institutional culture of the health care organization and the individuals serving as ethics committee members or consultants. Many ethics committees follow a mediation model. Individuals approaching the ethics committee or consultant for assistance should know in advance the role that the committee or consultant will play. They should also be informed of any work product that the ethics committee or consultant releases. See Guideline 36, “Communicating the Outcome.” In addition to designating an ethics committee or consultant to resolve disagreements, the health care organization should educate its staff about the purpose and use of this group or individual. The organization should encourage staff members to call for its assistance and should assure them that they will not face negative consequences, such as retaliation, for involung its services. See Guideline 27, ”Accessing the Ethics Committee or Consultant.” Staff education should include education about legal and ethical aspects of life-sustaining medical treatment. Education should also continue after the means are established to promote their ongoing use. See Guideline 26, “Education of the Health Care Organization.” The health care organization should also convey its support of this group or individual. For example, the health care organization should provide an ethics committee with an appropriate meeting place, supply it with adequate resources to conduct its functions, and afford it and its members appropriate status within the organization. See Guide- line 25, “Resources and Accountability.’’ 76 &SQhdElg Disputes Over Life-Sustaining Tkeatment

Guideline 24: Evaluating Disagreements The health care organization should collect information about disagreements over life-sustaining medical treatment, the management and outcomes of these disagreements, and the effectiveness of the group or individual designated to resolve these disagreements.

If improperly managed, disagreements over life-sustaining medical treatment can shatter the confidence of health care providers, disrupt cooperation among health care staff, create lasting animosity among surviving patients, family members, and friends, and generate considerable negative publicity in the surrounding community. Examining disagreements after the fact permits health care staff to learn from prior experience. As part of quality assurance and quality improvement programs, many health care organizations assign responsibility to specific people to evaluate the organization’s performance. A typical component of this evaluation is to ascertain satisfaction with the services provided. One way to evaluate the health care organization’s ethics committee or consultant is to collect information about how disagreements arose and were managed and resolved. The organization can then use this information to educate staff about how to prevent or resolve future disagreements. See also Guideline 27, “Accessing the Ethics Committee or Consultant. ” The health care organization can also use the information to evaluate the effectiveness of the ethics committee or consultant. Finally, providing an opportunity to comment may improve satisfaction and reduce the intensity of future disagreements.45

45 See The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining neatment: Ethical, Medicd, and Legd Issues in 7keatment Decisions (Washington: US. Government Printing Office, 19831, 117-18. Roles and Responsibilities of Ethics Committees and Consultants 77

Responsibility for collecting information about how the etkics committee or consultant responds to requests for assistance should be shared between the health care organization and the ethics committee or consultant. When adequate resources exist, an independent entity, such as a utilization review committee or an outside consultant, can provide this service. However, this independent entity and the ethics committee or consultant should work together. Collaboration promotes effective communication and a more informed analysis. When resources for an independent entity are not available, the organization should provide the ethics committee or consultant the necessary resources to collect information and to conduct a self-evaluation.

Guideline 25: Resources and Accountability The ethics committee or consultant should have sufficient financial and institutional resources to carry out its responsibilities and should make efficient, effective, and economic use of those resources.

Commentary

The ethics committee or consultant needs sufficient resources and personnel to fulfill its responsibilities effectively. The health care organization should make financial and institutional resources available to the ethics committee for training ethics committee members or consultants, for receiving and processing calls for assistance, for fulfilling its duties (including providing appropriate meeting places], for disseminating the results of its meetings, for evaluating its performance, and for maintaining its records. The ethics committee or consultant also should have sufficient authority to request consultations from independent health care consultants, when needed. The health care organization occasionally may need to relieve ethics committee members or consultants of other duties (e.g., as health care staff) to enable them to fulfill these responsibilities. The ethics committee or consultant should actively seek these resources. To maintain the confidence of the health care organization in which it operates land that generally provides its funding), the ethics committee or consultant should use its resources prudently and account for their use. 78 Resohhg Disputes Over Life-Sustaining Treatment

Guideline 26: Education of the Health Care Organization The health care organization should educate staff, patients, and the comnaeanaity ab~utissues associated with life-sustaining medical treatment.

Disagreements over life-sustaining medical treatment sometimes reveal systemic misconceptions among health care staff about the decision-malungprocess, particularly what actions providers can and cannot take with respect to withdrawing and withholding treatment. The existence of widespread misconceptions indicates a need for staff education. The health care organization should provide-and health care staff should attend-educational programs designed to correct these misconceptions. See also Guideline 41, “Self-Education.” In particular, health care staff need education on the distinction between ethical and legal issues associated with decisions about life- sustaining medical treatment. Sometimes ethics committee members or consultants will be capable of providing staff education. At other times, health care staff may require greater or different expertise. Legal counsel should take an active part in educating staff about legal myths associated with life-sustainingmedical treatment decisions. Legal counsel who are familiar with bioethical principles and case law in this area know that a health care organization does not risk incurring legal liability by following the wishes of the patient, even when the patient’s decision involves forgoing life-sustaining medical treatment. Promoting patient well-being is both compatible and consistent with the legal needs of the health care facility.46Excessive concern for risk management, in contrast, is not always consistent with the interests of either the patient or the health care organization. Like legal counsel, risk managers should strive for the best decision for the pa-

46 See, for example, Marshall B. Kapp, “Medical Decisionmalung for Older Adults in Institutional Settings: Is Beneficence Dead in an Age of Risk Management?”Issues in Law and Medicine 11 (Summer 1995):29. Roles and Responsibilities of Ethics Committees and Consultants 79 tient. Both legal counsel and risk managers should distinguish legal disputes from ethical disputes and encourage decision malung by health care staff based on established ethical principles. See also Guideline 43, “Role of Health Care Organization’s Legal Counsel During Litiga- tion.” While educational efforts may focus on health care providers, the Patient Self-DeterminationAct also imposes an obligation on the health care organization to provide community education about health care decisions.

Guideline 27: Accessing the Ethics Committee or Consultant The health care organization should inform patients, their surrogates, their close friends and families, and health care staff about the availability of its ethics committee or consultant. Informa- tion should include instructions for contacting the ethics committee or consultant and the procedures following an initial contact.

Commentary Participants in disagreements over life-sustaining medical treatment must first know about the ethics committee or consultant in order to use it. Furthermore, they must feel confident that this group or individual will give them helpful assistance, without subjecting them to negative repercussions. Health care staff are more likely than patients and family members to know of the committee or consultant and to call on it. Few patients or family members will be aware of or understand the internal worlungs of the organization. Therefore, the organization will need to use different means to make patients, surrogates, and close friends and family aware of the availability of the ethics committee or consultant. Brochures and other materials distributed at admission may alert patients, family members, and friends to the availability of an ethics committee or consultant. At admission, however, these individuals typically are distressed and distracted by the patient’s medical condition, the paperwork involved in admitting the patient, and the need to cope with the patient’s change in circumstances and residence. Con- 80 Resohhg Disputes Over Lifesustaining Treatment sequently, the health care organization should encourage its staff to recommend the committee or consultant if the situation warrants it. Announcements about the ethcs committee or consultant should be posted in places frequented by patients, surrogates, and friends and families [e.g.,waiting rooms, visiting rooms, dining areas). These announcements also should be posted in areas frequented by health care staff, such as staff lounges and dining areas. Patients and family members may be reluctant to involve the committee or consultant, particularly if they distrust its objectivity. If patients, surrogates, and close friends and family believe that the ethics committee or consultant is too closely tied to the health care organization, they will feel uncomfortable calling on it, especially for disagreements with health care staff. Patients, surrogates, friends and family members, and health care staff should have grounds for confidence that the ethics committee or consultant will remain impartial. The committee or consultant should communicate that it will not be in- fluenced inappropriately by members of the patient’s health care team or other individuals. See Guideline 3 1, “Staff Participation in Meet- ings.” Similarly, if health care providers view the committee or consultant as biased against them, few providers will request its services. Health care staff should also receive assurances that they will not experience negative repercussions for accessing these means. In addition, if a staff member prefers not to be identified as the individual that refers a matter to the ethics committee or consultant, the ethics committee or consultant generally should honor that preference.

: Developing Policies and Procedures

.The health care organization should develop written policies and procedures to govern the ethics committee or consultant.

Commentary

The manner in which an ethics committee or consultant handles a disagreement over life-sustaining medical treatment can determine both the disagreement’s outcome and the participants’ perceptions of the committee or consultant. Written policies and procedures help Roles and Responsibilities of Ethics Committees and Consultants 81 achieve a fair, impartial, and informed process. At the same time, individuals involved in these disputes often need some flexibility. Disagree- ments among staff members may require different treatment than those between family members and health care providers or those among family members. The ethics committee or consultant should retain sufficientflexibility to meet the needs of the participants and to address the pertinent issues. In some cases, state law requires that an ethics committee or consultant address a given disagreement or issue.47State or federal law or the provisions of a contractual agreement, such as grievance procedures set out in many health maintenance organization (HMO) and preferred provider organization (PPO) systems, also specify mandatory procedures for addressing a given matter. See Appendix B, ”Ex- amples of State-Mandated Models for Resolving Disagreements.” Health care organizations can consider various models for their ethics committee or consultant. Likewise, each health care organization should specify the circumstances, if any, that warrant mandatory referral.48

Guideline 29: Patient Participation in Meetings The health care organization should support effective patient participation in the ethics committee or consultant efforts to resolve a dispute over life-sustaining medical treatment.

47 See, for example, Md. Code Ann.,Health-Gen. 3 5-605 (1994) (if persons with equal decision-malung priority disagree about a health care decision for a patient who is incapable of making an informed decision, the attending physician must refer the matter to the facility’s patient care advisory committee); 79 Md. Op. Att‘y Gen. - (May 3, 1994) (if a health care agent’s instruction that a life-sustaining procedure be withheld or withdrawn is inconsistent with generally accepted standards of patient care, the health care provider must bring the matter to the attention of a facility’s patient care advisory committee or a court).

48 See generally Judith W. Ross et al., Handbook for Hospital Ethics Committees (Chicago:American Hospital Publishing, 1986), 57-59. 82 Resohhng Disputes over Life-Sustaining Treatment

Patients with decision-malungcapacity have the right to make their own decisions concerning life-sustaining medical treatment. The organization should encourage the patient to participate in the decision- making process. If the patient has decision-malung capacity, the organization should inform the patient about a call for the services of an ethics committee or consultant, should encourage the patient to participate, and should inform the patient about the activities of the committee or consultant if he or she is unable to participate. Even if the patient has questionable decision-malung capacity, he or she may be able to participate in a limited manner and should be encouraged to do so to the greatest extent possible. See the “Patient Decision Mak- ing” section on pages 13-15. The organization should establish procedures for accomplishing these tasks. The patient should receive sufficient assistance to permit him or her to participate effectively in ethics committee or consultant activities. The ethics committee or consultant should schedule meetings at a time and place convenient to the patient. It should give the patient clear, understandable explanations about medical terminology and procedures and should directly address likely language or cultural barriers. See Guideline 39, “Sensitivity to Diversity.” If the patient’s condition prevents his or her physical presence or limits the patient’s understanding of the discussions, a specific individual should serve as the patient’s representative at these discussions and report back to the patient. The patient may ask a friend or family member to represent the patient at these proceedings. This guideline also applies to patients who are minors. Providers should inform the minor when an ethics committee or consultant is asked to consult in his or her case. They should invite the minor to participate in the ethics committee process and provide sufficient assistance to enable him or her to participate to the extent possible given the minor’s functional capacity. Assistance from a parent or older sibling may be especially helpful. See Guideline 3, “Decision Making by Patients Who Are Minors,” and Guideline 30, ”Family Participation in Meetings.” An ethics committee or consultant may be particularly helpful when the minor and his or her parents or guardian disagree about treatment decisions. Roles and Responsibilities of Ethics Committees and Consultants 83

Generally, withholding information and excluding the patient from participation are inappr~priate.~~Providers, family members, and friends may overestimate the patient’s vulnerability to information about the actions of the ethics committee or consultant. Even when the patient lacks complete decision-malungcapacity, the provider, family members, and friends may underestimate the patient’s ability to participate in the process. Only under unusual circumstances should health care organizations exclude a patient from consultations intended to resolve disputes ,, in which the patient’s wishes conflict with the views of other individuals. The patient need not be present every time a provider informally seeks ethics advice, however. When an individual requests the exclu- sion of the patient from formal ethics consultations, the ethics consultant or members of the ethics committee may meet initially to determine the appropriateness of the request, without informing the patient. Such a meeting should, however, be limited to addressing this issue in accordance with the presumptions set forth above. On some occasions, patients may refuse the services of an ethics committee or consultant. Patients may not want these groups or individuals talking about them or may not want to participate in the process. Unless state law requires the ethics committee or consultant should honor the wishes of the patient or surrogate. The patient should understand, however, the resolution of any disagreement is likely to be more difficult without the involvement of the ethics committee or consultant. Even if the patient disagrees, the ethics committee should still be available to health care staff for advice and education. Often, the committee or consultant will have invaluable information, including general information about the legal and ethical constraints on decision malung. After the patient or surrogate agrees to the assistance of the ethics committee or consultant, ethics committee members or consultants

49 Federal law requires slulled nursing facilities to respect patients’ rights to participate in decision making. See 42 U.S.C. 1395i-3(cJ(1993 & Supp. 1995).

50 See, for example, Guideline 3, “Decision Malung by Patients Who Are Minors,” describing state child abuse and neglect statutes and their application in life-sustaining medical treatment decisions. 84 Resolving Disputes Over Life-Sustaining Treatment should inform the patient or surrogate that they will communicate with additional individuals, such as close friends and family, unless the patient specifically prohibits them from doing so. The patient should be advised that denying access to family members may limit the ability of the mechanism to fulfill its function, the resolution of any disagreement may be more difficult, and such exclusions are generally not preferable and are discouraged. When family members are germane to the resolution of the disagreement, the patient should be strongly encouraged to agree to their inclusion. A current debate concerns whether an ethics committee or consultant must secure the consent of a patient or surrogate before addressing disagreements. Some providers, who assert that patient or surrogate consent is unnecessary, explain that seelung advice from an ethics committee or consultant is the same as seeking a second opinion from a medical consultant-a practice that traditionally does not require the patient’s explicit consent. They argue that strict, formal requirements for patient consent are counterproductive insofar that they undermine patient interests by interfering with the patient’s wishes-namely, for the provider to benefit from consultations with bioethicists. Thus, requiring prior patient consent for ethics advice in every instance will inhibit referrals to the ethics committee or consultant in the very cases for which assistance may be most effective. Others tale an opposite view. They contend that the ethical principles of autonomy, privacy, and confidentiality require providers to give the patient an opportunity to decide whether such discussions will be held and who will be involved. They assert that because these discussions do not address strictly medical matters and involve people from outside the treatment team (including ethics committee members who might not otherwise be affiliated with the health care organization), the blanket consent that patients give for routine medical practices is inapplicable. Plainly, some communications with an ethics committee or consultant do not require permission of the patient whose case has pro- voked the need to seek advice. Provided that patient-identifying information is not disclosed, inquiries solely for informational purposes-for example, to learn about applicable ethical and legal standards-do not require the prior consent of the patient or surrogate. These consultations are comparable to studying a text or journal to Roles and Responsibilities of Ethics Committees and Consultants 85 clarify a point or enrich a clinician’s understanding. Inquiries beyond simple requests for information or clarification-especially formal referrals to an ethics committee-require patient notification and consent. As a general rule, providers should not disclose to ethics committee members or consultants personal and medical information that identifies the patient without first obtaining the patient’s consent. Some patients will take offense that providers have discussed this information, malung subsequent attempts to involve them in the process that much more difficult. Indeed, seelung consent rarely im- pedes consultation because patients generally appreciate the participation of informed experts and welcome the opportunity to express their concerns and wishes.

Guideline 30: Family Participation in Meetings When authorized by the patient, the health care organization should support the effective participation by the patient’s friends and family in efforts by the ethics committee or consultant.

Commentary Although some patients may exclude friends and family from participating in decisions about life-sustaining medical treatment, other patients prefer and may even insist that these individuals be a part of the decision-malung process. Because of their medical condition or cultural values, some patients will defer decision-malung responsibility to family members. Because of their close emotional ties with the patient, family members may feel that it is both their right and their responsibility to play a part in the decision-malung process. See Guidelines 11, “Impact of Diversity,” and 17, “Involvement of Fam- ily Members.” Under law, parents are the natural guardians of their minor children unless they are disqualified for some reason. See Guideline 3, ”Decision Malung by Patients Who Are Minors.” As a result, providers typically defer to parents in decisions involving health care for minors. Similarly, parents should play a considerable role in formal . meetings of the ethics committee or consultant concerning disputes 86 ResoMng Disputes Over Life-Sustaining Treatment over life-sustaining medical treatment for minors. Providers should inform parents when they request an ethics committee or consultant to consult formally in the minor’s case. See Guideline 29, “Patient Participation in Meetings.” Ethics committees and consultants should give family members, like all other participants in this process, understandable explanations about medical terminology and procedures and directly address likely language or cultural barriers. They should include family members who are minors in discussions whenever possible and appropriate. Generally, close friends and family have the patient’s best interests at heart. Occasionally, however, a disagreement involves a question about whether friends or family members are acting according to the patient’s wishes. Conflicts of interest-such as split family loyalties or a financial interest in the patient’s income or estate-sometimes hnder their ability to represent the patient’s wishes effectively. Ethics committees or consultants should not attempt to exclude friends or family members from participating in meetings solely because of a conflict of interest. Instead, they should explore ways to help the patient’s family and friends put aside their own interests in favor of those of the patient. Similarly, ethics committees and consultants should give special consideration to the potential for conflicts of interest by parents who act as surrogates for their minor children. For example, parents’ initial reactions may demonstrate shock, grief, and fear, rather than rational decision makmg. See Guideline 3, “Decision Malung by Patients Who Are Minors.” Under these circumstances, ethics committees and consultants should be cautious about simply deferring to the parents’ statements. Instead, they should explore underlying unresolved emotions that may be driving these statements and, as appropriate, encourage the parents to engage in a more deliberate decision-malung process.

Guideline 3 U : Suaf6 Participation in Meetings The health care organization should facilitate and support the effective pankipation by health care staff in the efforts of the ethics committee OB consultant to resolve disagreements. Roles and Responsibilities of Ethics Committees and Consultants 87

Commentary Health care staff can play a pivotal role in helping resolve disagreements over life-sustaining medical treatment. In disagreements among family members, for example, staff members may be asked to give their opinions as neutral and objective experts who possess relevant information or insights. Furthermore, because of their greater familiarity with the organization and their ability to detect disagreements as they develop, it may be more likely that staff will call on the ethics committee or consultant rather than the patient or the patient’s friends or family. Under other circumstances, staff members may disagree with family members or among themselves about the appropriate decision for the patient. Ethics committee members or consultants should be free to participate in relevant patient care and staff conferences and should have access to individuals pertinent to disagreements. Health care staff should make themselves available for meetings to resolve disagreements. See Guideline 25, “Resources and Accountability.” Health care staff should facilitate any proposed resolution of a disagreement by the committee or consultant. See Guideline 36, “Communicating the Outcome.”

Guideline 32: Patient Representatives1 When requested by the patient (or the patient’s surrogate), the health care organization should permit a person to present the interests of the patient to the ethics committee or consultant. If requested, the organization should assist in identifying a representative for the patient.

51 The designation patient representative does not refer to a specific office within the health care organization. Rather, a patient representative is any person chosen by the patient (or the patient’s surrogate) to promote the patient’s interests. Formal legal training is not a prerequisite for assuming this role. 88 ResoMng Disputes Over Life-Sustaining Treatment

Sometimes the patient or surrogate may need additional assistance in presenting his or her position to the ethics committee or consultant. The patient or surrogate may feel overwhelmed by the patient’s medical condition or by surrounding events. A representative may also be appropriate for a patient who is a minor, especially if the minor and his or her parents disagree about life-sustaining medical treatment. The assistance of a patient representative may help facilitate effective participation by the patient. If the patient or surrogate is unable to secure a representative, the health care organization should help the patient or surrogate obtain an appropriate representative. Because disagreements over life-sustaining medical treatment are usually not legal in nature, legal knowledge and expertise are generally unnecessary. Consequently, the representative need not be an attorney. Instead, having the confidence of the patient or surrogate, being able to address the issues under consideration, and being able to speak and act effectively on behalf of the patient are the most important characteristics of a patient representative. Sometimes a qualified representative may include someone from the health care organization. For example, a member of the patient’s health care team may enjoy the confidence of the patient and be very familiar with the patient’s wishes and interests. Similarly, a social worker, patient representative, or chaplain from the health care organization may be appropriate for this role. As long as the individual is able to avoid a conflict of interest in spealung and acting on behalf of the patient, the patient representative should not be disqualified merely because of an affiliation with the organization.

Guideline 33: Obtaining ‘information

To the extent permitted by patient privacy and confidentiality, the health care organization should promote the ability of the ethics committee 01-consultant to obtain information relevant to disagreements placed before it. Roles and Responsibilities of Ethics Committees and Consultants 89

Commentary

The ability of the ethics committee or consultant to resolve disagreements depends heavily on the willingness of staff members to provide relevant information. The health care organization should make it clear that attempts by staff to obstruct the efforts of the ethics committee or consultant are not acceptable. Patient records should be made ’ available, and health care staff should be prepared to provide necessary supplemental information in a timely fashion. To protect patient privacy and confidentiality, the organization should implement policies to secure the consent of patients or surrogates to release patient records, including information needed to contact relevant individuals, to the ethics committee or con~ultant.~~See Guidelines 29, 30, and 3 1, ”Patient Participation in Meetings,” “Fam- ily Participation in Meetings,” and “Staff Participation in Meetings.” At the same time, the organization should adopt written policies and procedures to describe how the ethics committee and consultant should protect the privacy and confidentiality interests of patients. See also Guideline 34, “Privacy and Confidentiality.”

Responsibilities of the Ethics Committee or Consultant

Guideline 34: Privacy and Confidentiality Ethics committees and consultants must respect patient privacy and confidentiality.

Commentary i Addressing disagreements over life-sustaining medical treatment may require the ethics committee or consultant to review information of particular importance to the patient. It may also require ethics cam-

s State law or the provisions of a health care benefits plan may mandate such disclosure or may make a right to appeal contingent on providing such information. 90 l!teSQhhg Disputes 6her Life-Sustaining Treatment mittee members to talk to a range of individuals about the patient's wishes and care. Committee members or consultants should understand clearly their responsibilities regarding patient privacy and confidentiality. The ethics committee or consultant should establish protocols and provide education to guide its members in fulfilling these responsibilities, including those involving protection of medical records. All ethics committee members-both health care members and lay members-should understand and adhere to these responsibilities. One useful device is requiring each ethics committee member to sign a statement that he or she will respect and protect patient privacy and confidentiality. It may be particularly applicable for committees with a large or relatively transient membership. Participants in discussions focusing on a given patient should remain sensitive to the privacy interests of the patient. The ethics committee or consultant should protect the patient from unnecessary physical exposure and intrusion. Some ethics committees, particularly those associated with academic institutions, permit individuals who are not formally associated with the health care organization to observe their proceedings for educational purposes. Ethics committees and consultants should secure the consent of patients or surrogates, family members and friends, and other participants in ethics committee deliberations before inviting visitors to observe these proceedings. Furthermore, ethics committees and consultants should caution visitors that they are bound by the same obligations as committee members and consultants to protect patient confidentiality and privacy.

Guideline 35: Maintaining Records The ethics committee or consultant should maintain written records of its activities.

Written records can assist the ethics committee or consultant for advising on ethical issues. Records communicate information effectively and accurately; they improve the ability of the committee members or consultants to learn from and build upon prior efforts; and Roles and Responsibilities of Ethics Committees and Consultants 9 1

they promote consistency and accountability in the process used to resolve these disagreements. Examples of documentation include min- utes of meetings and discussions. Documentation of meetings should state accurately the committee’s agenda, the available options, the committee’s conclusions, and the reasons for pursuing a specific course or recommendation. Similarly, consultants should document their activities, including discussions with patients, family members, and health care providers. Documen- tation need not be excessively detailed, but should clearly describe all the issues considered. Generally, documentation should not include the patient’s name. Records of specific cases should be kept confiden- tial and in a secure location. A current debate involves whether the ethics committee or consultant should document its efforts to resolve disagreements in the patient’s chart. In some organizations, only the attending physician or members of the patient’s health care team are permitted to make entries in the patient’s chart. Ethics committee members or consultants voice their concern that these individuals will inaccurately describe or record the committee’s or consultant’s efforts. In organizations that permit or require the ethics committee or consultant to record summaries of its efforts in the patient’s chart, however, attending physicians or members of the health care team are sometimes troubled that these summaries will undercut or compromise their own judgments and recommendations. Whatever the resolution of this contr~versy,~~ the practice should be consistent throughout the organization, relevant individuals should know when patient chart entries are being prepared so that these individuals may provide input into their drafting, and relevant individuals should be told when the entry is made in the patient’s chart. Some ethics committee members or consultants fear that their involvement in these disagreements may result in involvement in subsequent litigation or legal liability and that written records may be used against them in court proceedings. There is no indication that

53 See generally Judith W Ross et al., Handbook for Hospital Ethics Committees (Chicago:American Hospital Publishing, 1986),43-44. 92 Resolving Dispuues Oven Life-Sustaining Tkeatment involvement conducted in good faith will result in liability. In some instances, however, these records may be subject to discovery and ad- missible as evidence in

GuideUine 36: Communicating the Outcome The patient or surrogate and other relevant individuals should receive timely information about the advice of the ethics committee OF c~nsulta~t,including any recommendations. This information should include options for addressing unresolved issues, including those implicated by the particular advice or recommendations of the ethics committee or consultant.

Before beginning efforts to resolve a disagreement, the ethics committee or consultant should inform the participants that it will communicate its recommendations to all relevant individuals. The committee or consultant may refuse to provide services without first receiving assurances from the participants that it can communicate the outcome. All patients capable of understanding should receive information about the outcome. The surrogate, if any, also should receive the information. Even relatively young children should receive this information in a way they can understand it. The ethics committee or consultant should discourage requests by parents to withhold this information from their minor children. If the parents persist, the ethics committee or consultant should try to resolve the disagreement with the parents concerning withholding information from the minor. Health care providers responsible for the patient’s care should also receive information about the outcome.

54 The resolution of this issue typically revolves around matters of state law concerning the protection afforded to committees within health care organizations, including peer review committees. Roles and Responsibilities of Ethics Committees and Consultants 93

A secondary goal of the ethics committee or consultant typically is to facilitate consensus among participants in the disagreement. If the patient chooses to withhold information about the outcome from some or all of the participants, a consensus among the participants is more difficult to achieve. Thus, the ethics committee or consultant should discourage the patient from insisting on not informing all participants.

Guideline 37: Independence

The ethics committee or consultant should maintain an independent perspective and should never permit the interests of the health care organization to override those of the patient.

Commentary

Because the health care organization typically supports the ethics committee or consultant, some of the participants in these disagreements may believe that it favors the organization’s interests. Alterna- tively, because the ethics committee or consultant places such great weight on respecting and promoting patient preferences and interests, others may perceive that it has a bias favoring patients. Although the patient’s interests generally predominate, the ethics committee or consultant should reflect and consider a range of interests and should , examine all interests relevant to a particular disagreement. Although it will never have the institutional independence of the court, the ethics committee or consultant should strive for a perspective independent of that of the health care organization. The ethics committee or consultant compromises this perspective when it fails to approach the matter in an independent and objective manner. When it is called to help resolve a disagreement, the committee or consultant should assure participants in the disagreement of its independence and emphasize that it will maintain this independence in the course of its activities. It should listen carefully and respectfully to all expressed positions, conduct an independent review and appraisal, reach an independent outcome, and avoid conflicts of interest. See Guide- line 38, “Conflicts of Interest.” It should be cautious about allowing perceptions of bias to sidetrack its ability to resolve the disagreement 94 Resdving Disputes Over Life-SustainingTkeatment placed before it. Self-education efforts by the ethics committee or consultant should emphasize the importance of this independence and seek to promote it. Nevertheless, the ethics committee or consultant necessarily depends on the cooperation of other components of the health care organization over which it often has little or no direct control. It should be careful not to damage its reciprocal relationships with these components. To maintain its own independence, the committee or consultant should establish effective worlung relationships with other components of the health care organization. Similarly, it should establish effective ongoing worlung relationships with those individuals who are likely to be frequently involved in disagreements over life-sustaining medical treatment.

Guideline 38: Cormflicts of Interest

%ndividua\sperforming fwnctions associated with the ethics committee or ~QIW~WI~ sh~~ldbe aware of and actively address potential conflicts QF interest that may c~i~~pro~~~isetheir ability to fLaPfil! theis fU,ItlctiQtlS.

The success of the ethics committee or consultant depends, in part, on its ability to exercise independent professional judgment and to maintain the confidence of the participants in its impartiality and good faith. Conflicts of interest (and the appearance of conflicts) undermine participants’ confidence in the committee or consultant. Pro- viders typically rely heavily on one another and assume the good faith of their peers as a matter of course. However, patients, close friends and family, or other participants in a disagreement may perceive a pronounced power imbalance between themselves and providers, particularly with providers who are members of the patient’s health care team. See Guideline 40, “Sensitivity to Imbalances in Power.” This perceived power imbalance can generate suspicions about both the health care providers who are involved in the disagreement and those who serve as ethics committee members or consultants. Roles and Responsibilities of Ethics Committees and Consultants 95

The health care organization should establish policies to excuse members of the patient’s health care team from participating as ethics committee members or consultants in disagreements involving their patients. Similar provisions should exist to excuse committee members when they are directly involved or closely associated with one of the disputants in a disagreement. These individuals, however, should be allowed to provide relevant information to the ethics committee or consultant. They also should be able to participate in discussions conducted by the committee or consultant when their role as a health care team member is vital to the resolution of the disagreement. The ethics committee or consultants should make clear to all participants, however, that the health care team member is not present as an ethics committee member and will not directly influence efforts to resolve the disagreement. A common relationship does not necessarily create a conflict of interest. For example, the fact that a participant in a disagreement and an ethics committee member or consultant provide health care services within the same organization should not automatically imply a conflict of interest. Provided that the relationship does not compromise the independent judgment of the committee members or consultant or the confidence of the participants in the ethcs committee process, the integrity of the ethics committee process is not threat- ened. When an ethics committee member or consultant becomes aware of a possible conflict of interest that might compromise the independent perspective of the ethics committee, he or she should inform the participants in the disagreement of the possible conflict and any potential impact it may have on the committee’s functioning. The participants may choose to disregard the potential impact and have the ethics committee proceed as it normally does. Alternatively, the participants may choose to have the individual with the possible conflict withdraw as a committee member. As discussed above, the individual

may still participate in discussions as an individual involved in the , disagreement. Finally, the participants may choose to dispense with the services of the committee and rely on alternative means to resolve their disagreement. 96 Resolving Disputes Over Life-SustainingTreatment

Guideline 39: Sensitivity to Diversity

The ethics committee or consultant should be aware of and sensitive to race, culture, gender, religious belief, sexual orientation, age, mental or physical disability, socioeconomic status, and other elements of diversity in its handling of disagreements over Bife-sustaining medical treatment.

To maintain confidence in its process, the committee or consultant should ensure that it operates without bias or prejudice. This requires it to operate free from bias based on race, culture, gender, religious belief, sexual orientation, age, mental or physical disability, socioeconomic status, or other characteristics. The committee or consultant also should be sensitive to different values and beliefs. See Guideline 11, “Impact of Diversity.” The ethics committee or consultant should enhance its own diversity and educate itself about the different values and beliefs about life-sustaining medical treatment that are often associated with cultural, social, or physical characteristics. This will help the committee or consultant determine when to explore the effect of these characteristics and will promote its ability to conduct these ex- plora tions. To avoid stereotyping, however, the committee or consultant should apply general knowledge about these characteristics with great caution. Group beliefs or preferences do not always apply to all members of the group. The views and preferences of the individual patient are what is of paramount importance. In other words, the ethics committee or consultant should always listen to the patient and attempt to determine the patient’s preferences.

Guideline 40: Sensitivity BO Imbalances in Power

The ethics coa~lmitteeor consultant should be sensitive to imbalances in power and the consequences for handling disagreements over life-sustaining medical treatment. Roles and Responsibilities of Ethics Committees and Consultants 97

Commentary

Substantial differences may exist in the respective power of the participants in disagreements over life-sustaining medical treatment. This may be particularly true for disagreements between patients or their friends and family and health care providers. Individuals may differ with respect to their access to resources (including obtaining additional tests and opinions), education level and expertise in health care matters, perceived status and influence within the health care organization, ability to generate and evaluate options, and ability to articulate persuasive arguments or to challenge opposing arguments.55 Other imbalances may also exist. For example, in a disagreement among family members, established hierarchies and patterns of interaction may prevent some family members from asserting their position. Like- wise, perceived differences in status may make it difficult for a nurse or other members of the health care team to contest the position of a physician during a disagreement. These imbalances can influence the process for resolving disagreements about life-sustaining medical treatment. They can affect the willingness of individuals to seek the assistance of the committee or consultant. They can discourage individuals from coming forward and joining discussions. They can keep information from the committee or consultant or limit participants’ ability to fully explore the issues. They also can influence the outcome generated by the committee or consultant. For example, limited information can reduce the number of options. Likewise, perceived imbalances can cause participants in the disagreement to resist the outcomes of the committee or consultant. The committee or consultant should be sensitive to the potential for these imbalances. If identified imbalances appear to affect the process used to resolve a disagreement over life-sustaining medical treatment, the committee or consultant should take steps to address these imbalances. For example, the committee or consultant might meet

55 See Diane E. Hoffmann, ”Mediating Life and Death Decisions,’’ Arizona Law Review 36 (19941: 821, 865-66. 98 ResoIviang Disputes Over Life-Sustaining Treatment with one of the participants in the disagreement separately, provide additional information or explanations to the individual, identify someone to assist the individual, or otherwise help him or her to participate effe~tively.~~The health care organization should support such efforts by providing additional resources as necessary. See Guideline 29, “Pa- tient Participation in Meetings”; Guideline 30, ”Family Participation in Meetings”; Guideline 3 1, “Staff Participation in Meetings”; and Guideline 32, “Patient Representative.”

Guideline 4 U : Self-Education Ethics committees and consultants should educate themselves about issues involving life-sustaining medical treatment and ways to address them.

Ethics committee members or consultants should remain well informed about issues relevant to disagreements over life-sustainingmedical treatment and procedures for their resolution. By continuously educating themselves, ethics committee members or consultants can male informed evaluations of their policies and procedures. They should be aware of emerging issues and literature relevant to the performance of their tasks, when cases raise new or unique issues. Ethics committees and consultants should also be aware of issues associated with their own process. For example, the role of lay or community members, administrators of the health care organization, lawyers (particularly counsel for the health care organizationJ, ethicists, and medical staff raise different issues on ethics committees. Simi- larly, the use of subcommittees and voting procedures have all been the subject of debate.57Whether ethics consultants should be affiliated

56 See generally Nancy N. Dubler and Leonard J. Marcus, Mediating Bioethical Dis- putes: A Practical Guide (NewYork United Hospital Fund of New York, 1994).

57 See, for example, Judith W. Ross et al., Health Care Ethics Committees: The Next Generation (Chicago:American Hospital Publishing, 1993);Judith W. Ross et al., Hand- book for Hospital Eth;rcs Committees (Chicago:American Hospital Publishing, 1986). Roles and Responsibilities of Ethics Committees and Consultants 99 with or independent of the organization [representing a trade-off between the consultant’s independence and familiarity with and accountability to the organization) also has been discussed. The roles of mediation services and legal counsel (particularly regarding patient contact during an ongoing disagreement, even when the patient is not represented by counsel) in resolving disagreements over life-sustaining medical treatment have also received attenti~n.~~ In general, educational programs and educational materials are available for ethics committees and consultant^.^^ In some states, the functions of the ethics committee or consultant may be governed by state law or regulation or contractual provisions. The ethics committee members or consultants must remain aware of these restrictions and any changes made to them.

58 See Diane E.- Hoffmann, “Mediating Life and Death Decisions,” Arizona Law Review 36 ( 1994);and Nancy N. Dubler and Leonard J. Marcus, Mediating Bioethical Disputes: A Practical Guide (New York United Hospital Fund of New York, 1994).

59 See, for example, “FacultyGuide” Decisions Near the End of Life (Newton, Mass.: Education Development Center, Inc., 19911; American Association of Homes for the &ng, “Technical Assistance Brief Patient Self-Determination Act of 1990: Imple- mentation Issues” [ 199 1)j American Association of Homes and Services for the Aging, Malung Ethcal Decisions in Long-Term Care: A Collection of Monographs and White Papers Produced for the AAHSA Commission on Ethics in Long-Term Care (Washing- ton: American Association of Homes and Services for the &ng, 1994); Nancy N. Dubler and Leonard J. Marcus,Mediating Bioehcal Disputes: A Practical Guide (New York United Hospital Fund of New York, 1994).

Judicial Involvement in Disputes 101

Decisions about life-sustainingmedical treatment generally are best made by the patient or surrogate, close friends and family, and immediate health care providers. Even when significant disagreements arise, approaches, groups, and individuals such as those identified in Chap- ters 3 and 4 may facilitate an amicable resolution. Health care organizations also may find emerging techniques for dispute resolution, such as mediation and arbitration, helpful for resolving disputes. Neverthe- less, judicial involvement in decision making may be appropriate, or even required, under certain circumstances. Judicial involvement can resolve otherwise intractable disputes. It can give the disputants an opportunity to articulate and air their views before a respected and neutral forum. It also can limit further tension and animosity among them.

The Proper Role of the Courts in the Decision-Making Process Considerable consensus exists among health care providers, lawyers, and courts that, in the absence of a real dispute or issue, health care organizations should not invoke judicial involvement merely to protect themselves from civil or criminal liability.60Using the judicial

6o See Alan Meisel, The &ght to Die, 2d ed., vol. 1 (New York, Wiley Law, 1995), section 5.26; Coordinating Council on Life-Sustaining Medical Treatment Decision Makmg by the Courts, Guidelines for State Court Decision Making in Life-Sustaining Medical Treatment Cases (St. Paul, Minn.: West, 1993). 102 Wesdvhg Disputes Over Life-SustainingTreatment system in this manner is neither an appropriate use of judicial resources nor an effective method of sound, clinical decision making. For cases in which a significant legal question exists, however, judicial involvement may be advisable or necessary. Aslung courts to consider emerging issues associated with life-sustaining medical treatment has both advantages and disadvantages. Re- questing judicial assistance provides the health care community and society with an opportunity to explore publicly the issues associated with life-sustaining medical treatment. In the past twenty years, judicial decisions have played a critical role in educating society about the legal, ethical, and practical aspects of these issues. Reasoned judicial opinions also can provide a useful framework for guiding future decision makers and for preventing future disputes. These advantages notwithstanding, many thoughtful observers, including some eminent jurists, argue that the judicial arena is neither the only nor necessarily the best arena for resolving these difficult questions.61Patients, family members, and health care providers may wait years for a case to wind its way through the judicial system before the courts reach a final decision. Furthermore, litigation is generally expensive and often emotionally difficult for the individuals who participate in it. More effective means of resolving disputes sometimes exist, particularly for individual cases. Health care providers, patients, and family members generally can resolve these matters among themselves and should not be preempted from doing so. Notwithstanding the broader social debate, legislation or previous court decisions may require judicial involvement, even in the absence of a dispute. For example, when an incapacitated patient has not previously expressed treatment preferences and family members are not available to serve as surrogates, state law may require appointing a guardian. The law governing the circumstances under which judges must appoint a guardian or formally recognize a patient’s surrogate varies by state. Health care providers should consult their legal counsel about the applicable law in their states.

61 Coordinating Council on Life-Sustaining Medical Treatment Decision Making by the Courts, Guidelines for State Court Decision Making in Life-Sustaining Medical Tkeatment Cases (St. Paul, Minn.: West, 1993). Judicial Involvement in Disputes 103

Irresolvable Disputes

Most life-sustaining medical treatment cases involve disputes in which the parties appear to have become irrevocably deadlocked. These cases involve a number of factually specific circumstances. As a general matter, however, the question to be answered before seelung judicial involvement is whether the dispute is, in fact, irresolvable. Health . care facilities have a number of resources at their disposal to resolve disputes. An irresolvable dispute is one in which all of the available resources of the health care organization have been exhausted or re- jected by the parties. After determining that a dispute is irresolvable and before seelung judicial assistance, the parties should also understand the nature of the dispute. Disputes may focus on the patient’s decision-malung capacity, the patient’s actual or probable wishes regarding treatment, the identity or qualifications of a surrogate, or the proposed course of treatment. In some instances, there is more than one contested issue. A dispute over which course of treatment a patient selected, for example, may raise questions about the patient’s decision-malungcapacity. This overlap may cloud the issues. Regardless of the underlying issues, the way in which the parties present the matter may influence, or even determine conclusively, how the court will decide the case. Failure to frame the issues properly may lead to a judicial ruling that fails to address a party’s fundamental questions. It may even result in the court refusing to consider the matter at all. Consequently, a clear understanding of how the parties should frame the issues is a critical precursor to seelung judicial involvement. The following sections illustrate the types of cases for which judicial involvement may be appropriate.

Irresolvable Disputes over the Patient’s Decision-Making Capacity In many life-sustaining medical treatment cases, whether the patient has sufficient capacity to participate in decision malung is obvi- ous. Either the patient is unconscious or comatose and unable to make health care decisions, or the patient is conscious, alert, and obviously capable of malung decisions. In some cases, however, medication, de- 104 Wesolvhg Disputes Over Life-SustainingTreatment pression, dementia, or other physiological or psychological conditions impair the patient’s decision-malung capacity or interfere with his or her ability to express treatment preferences. Physical characteristics, such as deafness or extreme old age, sometimes are mistaken for a lack of decision-malung capacity. The patient’s capacity may even fluc- tuate periodically so that he or she is rational at some times and irra- tional at others, creating uncertainty about whether the patient is capable of expressing valid treatment preferences. Regardless of periodic fluctuations, family members and health care providers should not make irreversible decisions about life-sustaining medical treatment if the patient is likely to regain decision-malung capacity. Furthermore, the fact that a physician or a family member disagrees with the patient’s decision is not sufficient to establish the patient’s lack of capacity. Decision-malung capacity refers to a patient’s ability both to understand the nature and consequences of medical decisions and to reach an informed decision about them. The question of a patient’s decision-malung capacity is a clinical one that health care providers routinely answer. The attending physician generally determines whether a patient has sufficient capacity to make decisions for himself or herself. In borderline cases, however, the physician may request that a health care provider with specific expertise in malung these determinations evaluate the patient.62 A determination that an individual is not capable of making health care decisions-and that a surrogate should be authorized to make them-generally does not require a judicial determination. State law varies with respect to the specific circumstances that warrant a judicial proceeding to determine a patient’s “competency.” As a general matter, however, judicial involvement should be limited to cases in which there is an irresolvable dispute over whether or not the patient has decision-malung capacity. The term incompetency in this context is a legal term-of-art indicating that a court has examined evidence of the patient’s decision-malung capacity and concluded that the patient

62 Alan Meisel, The Right to Die, 2d ed., vol. 1 (NewYork Wiley Law, 19951, 236- 37. Judicial Involvement in Disputes 105

‘, is incompetent to make decisions or handle his or her affairs without , the assistance of a guardian. The fact that a patient is under a legal

1 guardianship does not necessarily mean that the patient lacks capacity

’ to make health care decisions. For example, a patient may still retain the ability to make health care decisions, even if a guardian has been appointed to manage a patient’s financial affairs.

Irresolvable Disputes over the Patient’s Treatment Decision Except for narrow circumstances, all states recognize a competent patient’s right to refuse medical treatment, including life-sustaining medical treatment. After a patient with decision-malung capacity refuses treatment, requests for judicial review generally are unnecessary. If the patient becomes unable to express his or her treatment choices, health care providers should honor the patient’s previously expressed or indicated desires regarding treatment, absent substantial evidence that those preferences are no longer valid. In the absence of previously expressed preferences, however, determining the incapacitated patient’s desires frequently can become a source of dispute, especially among family members. The particular circumstances that lead to irresolvable disputes over the patient’s preferences are many and varied. In some instances, the patient or the patient’s surrogate may demand treatment that the physician believes is medically futile or otherwise inappropriate. See Guide- lines 2 1, “Medically Futile Treatment,” and 22, “Costs and Resource Allocation.” If the health care organization is unable to resolve a dispute of this kmd, judicial involvement may be appropriate. More frequently, disputes over the patient’s choice of treatment arise because of uncertainty about the patient’s decisional capacity or the patient’s treatment preferences. Even if the patient executed a living will, its provisions may not always apply to the patient’s specific medical condition. In some instances, a surrogate may interject his or her own preferences regarding life-sustaining medical treatment rather than represent the preferences of the patient. The dispute may also reflect a personality conflict or a power struggle between individuals that is disguised as a dispute over the patient’s treatment preferences. Indications that a surrogate is failing to honor these preferences may likewise demonstrate a need for judicial involvement. 106 Resolving Disputes Over ]Life-SustainingTkeatment

I Hrresohbk Disputes over Designation of the Surrogate

Another potential area of disagreement involves the question of who should serve as the surrogate for an incapacitated patient. Rarely is the issue of designation the only significant disagreement in litigation. When the treatment team and all members of the patient’s family agree that the treatment conforms to the patient’s wishes, the identity of the person who actually gives consent is rarely challenged or a matter of great concern. Disputes over designation of the surrogate often involve allegations that a potential surrogate has a conflict of interest that prevents him or her from making decisions in accordance with the patient’s wishes. Common examples of conflicts of interest include situations in which the surrogate stands to benefit financially from either terminating or continuing life-sustaining medical treatment. Other reasons may exist for challenging the designation of a prospective surrogate. Surrogates’ emotional ties to the patient or their strained psychological state of mind may hinder their ability to make appropriate decisions under these circumstances. “Baby Doe” regulations address this possibility in the context of parents of severely disabled children making decisions about life-sustaining medical treatment. See Guideline 3, “Decision Makmg by Patients Who Are Minors.” Persons attempting to interpose their own values or beliefs in the decision-malung process may also be inappropriate choices as surrogates. If friends, family members, or health care providers believe that a conflict of interest or other limitation will interfere with the surrogate’s ability to make appropriate decisions, judicial involvement in the designation of the surrogate may be appropriate. A dispute over who should speak for the incapacitated patient may also overlap with questions about the appropriateness of the proposed treatment plan or a dispute about the patient’s treatment wishes. For example, when more than one individual seeks to become the patient’s surrogate, each is likely to claim having superior laowledge about the patient’s treatment preferences. Likewise, a disagreement between the patient’s surrogate and the health care provider about the proper course of treatment may be the foundation of a dispute over who should be designated as the patient’s surrogate. Before seelung judicial involve- Judicial Involvement in Disputes 107

ment, the health care organization should identify and appropriately f address the actual underlying basis of the dispute. Many states have enacted legislation to guide health care providers and family members in identifying appropriate surrogates. In the absence of an advance directive, these statutes set out a hierarchy of preferred surrogates that favors the patient’s closest relatives (eg, spouses, adult children) over more distant family members. The legislative language may not be helpful, however, for cases in which the individuals vying for this designation have equal status under the law (e.g., siblings). Involung judicial assistance to resolve these disputes can relieve both health care providers and family members of great uncertainty and discomfort. In addition, prompt judicial recognition of the appropriate surrogate’s authority may prevent individuals, such as relatives who are unfamiliar with the patient’s preferences, from inappropriately attempting to assert decision-malung authority or interfering with the surrogate’s ability to carry out the patient’s wishes.

Irresolvable Disputes over the Surrogate’s Treatment Decision The most common disputes over life-sustaining medical treatment center on the surrogate’s treatment decision. As noted above, however, this type of dispute may be framed as a dispute about the patient’s decision-making capacity, the patient’s actual or probable wishes, or the patient’s best interests. Only in rare instances, such as when the legality of the proposed course of treatment is in question, do courts decide cases involving disputes over a treatment decision. Courts generally restrict themselves to a determination of whether the surrogate has acted in accordance with the appropriate legal standards for surrogate decision malung, rather than attempting to act as surrogates themselves.

The Proper Role of Health Care Providers During Litigation Litigation over life-sustaining medical treatment disputes can reso- nate throughout the health care organization, often with disastrous results. Litigation often exacerbates already strained relationships 108 Resolving Disputes Over Life-Sustaining Tkeatment among the parties. Unlike other types of litigation in which the parties may have little or no direct contact with one another, ongoing patient care often requires litigants in these disputes to continue to interact on a regular basis. By jeopardizing the trusting relationship between health care staff and family members, litigation can interfere with the communication necessary for patient care. The organization’s senior administrators and legal counsel may appear to second-guess, influence, or dictate health care decisions inappropriately. Health care staff may view family members as unreasonable, unduly antagonistic, and demanding. Family members may believe that health care staff are obstructing their access to needed information and the organization’s resources or, in some instances, are failing to fulfill their responsibilities as caregivers. The guidelines below are offered to minimize some of the negative consequences associated with litigation in life-sustainingmedical treatment cases. Although financial and other considerations may affect their implementation, observation of these guidelines can minimize the tension associated with litigation and improve understanding of the judicial decision-malung process.

Guideline $2: Bationships with the Patient and Family During Litigation TQ provide FQ~the patient’s continued health care needs and to maintain effective communication and relationships among the individuals participating in or affected by the litigation, the health care organization should:

a. Offer to assign to the patient an attending physician who will not participate in the litigation; b. Consider reassigning, as appropriate, nurses and other allied health care providers who may be required to participate in judicial proceedings or whose ability to provide patient care may be compromised by the litigation; c. ‘Following any appropriate staff reassignments, continue to the extent possible the health care team’s assignment through Judicial Involvement in Disputes 109

the duration of the litigation regardless of whether the staff ordinarily would rotate assignments during this time; d. Make the organization’s resources (e.g., counseling, pastoral services, etc.) available to the patient and the patient’s family and friends to reduce stress and anxiety caused by litigation; and e. Respond appropriately to changes in circumstances (e.g., the patient’s medical condition) that affect the underlying dispute or the litigation.

Commentary Maintaining communication among the patient, family members, and health care providers is critical when malung any decisions about life-sustaining medical treatment. When the individuals involved in the decision contemplate litigation to resolve the matter, communication becomes doubly important. Misunderstandings may arise during litigation that would not ordinarily occur. Open lines of communication may relieve family members’ fears that health care staff will fail to care for the patient appropriately. In addition, reaffirming the areas of patient care on which patients, family and friends, and staff agree may prevent care from being further complicated by litigation. The health care organization should reassure the patient and the patient’s family that it will continue to maintain good relationships with them to the greatest extent possible and that the patient’s care will not suf- fer as a result of the litigation. In addition to clinical care responsibilities, the attending physician plays a pivotal role in communicating with the patient or the patient’s surrogate and family members. Involvement in litigation as either a witness or a party, however, may place the physician in an awkward position in relation to the patient, the surrogate, friends and family, or the health care organization. Likewise, other members of the health care team who are involved in or affected by the litigation may feel anxious in this position. This tension is particularly preva- lent for cases in which allegations of malpractice against health care staff are made. 110 ResoBvimg Disputes Over Life-SustainingTreatment

In some cases, transferring the patient to another health care organization may alleviate some of this tension. Another option is to assign for the duration of the case a physician who was not involved in the dispute that led to the litigation. Although this physician may be called to testify, he or she is not a “party” to the litigation and is less likely to be viewed as an adversary by the patient or the patient’s family. Similarly, reassigning nursing staff and other allied health care providers is appropriate if their continued involvement in patient care is likely to produce unnecessary conflict. Some facilities may be unable to consider all of these options because they lack sufficient resources. Nonetheless, the health care organization should consider malung these alternatives available in appropriate circumstances. Continuity of care also minimizes tension. Whenever possible, the patient’s primary health care team should continue in that assignment for the duration of the litigation, regardless of staff rotations that would ordinarily occur. As with all significant changes in patient care, the organization should inform patients and interested family members of significant changes in the health care team and, when possible and appropriate, allow them to participate in considering key new members of the team. Although health care providers’ primary obligation is to the patient’s care and welfare, they should also respond to the emotional needs of the patient’s family. Health care providers should inform appropriate staff from the health care organization (e.g., social workers, psychia- trists, psychologists, and pastoral care personnel] of impending or ongoing litigation. In turn, these individuals should be prepared to respond to anxiety, anger, or frustration felt by family members. In addition, the organization may wish to inform family and friends about community resources that may be helpful to them. Parties involved in litigation sometimes incorrectly assume that after the litigation process begins, no further steps can be taken to resolve disputes and that everything relevant to the litigation must remain unchanged until the dispute is resolved by the court. As a result, the parties can miss important opportunities to resolve disputes themselves without further court involvement. For example, changes in the patient’s medical condition, the available treatment options, or the availability of other health care facilities willing to provide care may offer new solutions that were previously unavailable. Rather than Judicial Involvement in Disputes 111 adopting an inflexible stance, health care providers should be alert to these opportunities. As these opportunities arise, providers should discuss with the litigants any appropriate options made possible by these new opportunities.

Guideline 43: Role of Health Care Organization’s Legal Counsel During Litigation

To minimize disruption to organizational routine and tension associated with litigation, legal counsel for the health care organization should:

a. Make clear to all individuals participating in the litigation which client or clients the attorney represents; b. Be readily accessible to the organization’s staff to answer questions and to relieve anxiety about what to expect during litigation; c. Use procedures, where appropriate, to minimize the disrup- tive effects that litigation may have on patient care and the organization’s routines; d. Present information about relevant medical-ethical standards to the court; and e. Actively engage in self-education about legal, medical, and ethical issues involving life-sustaining medical treatment.

Commentary Often in life-sustaining medical treatment litigation, several attorneys-representing different clients-participate in the proceedings. Patients, surrogates, family and friends, and health care staff are often unsure whose interests a given attorney represents. For cases in which the organization’s interests do not conflict with those of its staff and are consistent with the requirements of legal ethics, legal counsel for the health care organization may represent more than one client in the litigation. Typically, these clients include physicians, nurses, and other employees or agents of the organization. Because of the potential for misunderstanding, the organization’s legal counsel should inform 1 12 Resonvhg Disputes OVE~Life-Sustaining Treatment these individuals which client or clients the attorney represents. In addition, it is often difficult to predict at the beginning of a dispute whether the organization’s interests differ significantly from those of other potential clients. Consequently, legal counsel for the organization has an obligation to inform all prospective clients of the possibility of a conflict and, when appropriate, to advise them to consult an independent attorney. The organization’s legal counsel is particularly well suited to educate health care staff about litigation and should be readily accessible to answer questions about the legal process that staff will encounter during litigation. These discussions may ease some of the fears and dispel some of the misconceptions that health care providers commonly hold about the judicial process. In addition, counsel should be able to clearly explain to health care providers the difference between the legal, medical, and etlcal issues raised in litigation. Legal counsel should indicate to health care staff which individuals have authority to speak on the patient’s behalf regarding patient care matters. Typically, individuals who possess this authority are the patient if he or she has decision-malung capacity, a surrogate expressly designated by the patient, family members who qualify as surrogates under state law, and the attorney for the patient or the patient’s surrogate. Notwithstanding the importance of respecting the legal authority of these individuals, the organization’s legal counsel should recognize the legitimacy of ongoing communication between health care staff and nonsurrogate family and friends. The attorney should not discourage the patient’s health care team from communicating with these individuals. In some life-sustaining medical treatment cases, individuals, organizations, and special interest groups with no direct, personal relationship to the patient may try to involve themselves in the litigation. Legal counsel for the organization should inform health care staff that the organization is not obligated to accede to the demands of these third parties. Instead, health care staff should refer these individuals to legal counsel for the organization. In addition to relieving the anxiety of health care staff, the attorney representing the organization should be mindful of the disruption that judicial proceedings can have on the relationship between the patient and members of the health care team. In particular, legal coun- Judicial Involvement in Disputes 113 sel should avoid, whenever possible, creating the appearance of a conflict of interest for health care providers. Legal counsel should also consider requesting the court to allow testimony or evidence in a manner that is unlikely to disrupt orderly routine in the organization. For example, the testimony of certain witnesses may be provided by affidavit or in a videotaped deposition. Other alternatives include encouraging stipulations on uncontested matters or employing video technology to permit live testimony of a witness from a remote location. Legal counsel should inform the court about medical-ethical standards when relevant to the legal dispute.63Courts are often sensitive to the medical-ethical standards under which health care providers operate and may accommodate these standards when drafting their orders. Some judges, however, may be less familiar with medical-ethical standards. They may require a concise, clear explanation of them, including the potential impact of judicial orders on health care providers’ ability to adhere to these standards. Providing this information may assist the court to formulate judicial rulings that do not clash with the medical-ethical standards of the health care organization. Issues or litigation concerning life-sustaining medical treatment are only one of a diverse range of matters typically handled by the health care organization’s legal counsel. Generally, these types of disputes arise under unusual circumstances. As a consequence, some attorneys representing health care facilities lack substantial knowledge about the law pertaining to life-sustaining medical treatment. Others do not encounter these issues on a sufficiently frequent basis to be aware of significant changes in the law. As a result, these attorneys may adopt a conservative, “risk-averse”approach to decision making when confronted with this type of litigation. If counsel for the health care organization is unfamiliar with this area of law, he or she should consult an appropriate expert in health law before advising the organization to proceed with litigation. To ensure that legal counsel is able to

63 For examples of generally accepted medical-ethical standards, see Coordinating Council on Life-SustainingMedical Treatment Decision Making by the Courts, Guide- lines for State Court Decision Makzngin Life-Sustaining Medical Treatment Cases (St. Paul, Minn.: West, 19931, 142. 114 ]Resolviwg Disputes Over Life-SustainingTreatment provide appropriate legal advice to the health care organization, counsel also has a duty to actively engage in self-education about legal, medical, and ethical issues associated with life-sustainingmedical treatment.

Guideline 44: Understanding Judicial Procedures and Judicial Decision Making HeaM care providers should have a basic understanding about judicial procedures and judicial decision making in life-sustaining medican treatment litigation.

Misperceptions by health care providers about judicial procedures can exacerbate the tension associated with these proceedings. For health care professionals, judicial proceedings often appear time-consuming, expensive, inconvenient, invasive, and designed to exclude rather than admit relevant information. Litigation, however, requires strict obser- vance of procedural rules to protect the rights and interests of litigants and to ensure the administration of justice. Following is a brief explanation of some aspects of judicial hearings that frequently perplex health care professionals.

Time Consumption and Expense

Satisfymg the rules of judicial process is often a time-consuming and expensive operation, but one that is necessary to ensure justice for the individuals participating in the litigation. For example, notifying appropriate individuals and giving parties sufficient time to gather information before hearings protect the rights of all parties. Although some health care providers may prefer a more rapid style of decision malung, “due process” protections encourage fair hearings and promote appropriate decision malung by the court. When the dispute involves a minor, many states impose additional procedural requirements to protect the minor’s rights. Litigation in the United States is based on the assumption that all parties with a direct interest in the case will participate in a structured Judicial Involvement in Disputes 115 manner in judicial proceedings. Therefore, all individuals with a legally protected interest need to receive notice of the pending litigation. In litigation over life-sustaining medical treatment, the individuals receiving notice typically include the patient, a surrogate if the patient lacks decision-makmg capacity, the attending physician, and representatives of the organization’s admini~tration.~~The court may also invite participation by family members, health care providers, and other people, institutions, and agencies with a relationship to the patient. After being informed of their right to participate, these individuals may secure legal representation to ensure that their views are expressed adequately. Even when these individuals cannot participate in person (eg, an incapacitated patient] or choose not to participate, the court may request a guardian ad litem to conduct an independent investigation and to report how these interests might be affected by the court’s decision. Before going to trial, the parties exchange information, generally through a formal question-and-answer process called discovery. Al- though often time-consuming and expensive, this process is geared toward eliminating surprise tactics or “trial by ambush.” It requires the parties to communicate their respective positions and to identify information relevant to those positions. In some instances, the parties may agree to dismiss a case based on the information gathered during discovery. Sometimes the parties realize that there is no legal dispute that the court has authority to hear or that their claim has no factual basis. Alternatively, the information may bring areas of agreement or weaknesses in their claims to light. As a result, the parties may be able to settle the case without going to trial. If the case proceeds to trial, however, the adversarialprocess is the method of resolving disputes in litigation. During this process the parties attempt to present their version of the dispute in the best possible light and to discredit their opponent’s version. The judge then decides the case by applying the relevant law to the facts of the case as presented by the parties. Governing this process arerules of evidence that

64 See Coordinating Council on Life-Sustaining Medical Treatment Decision Mak- ing by the Courts, Guidelines for State Court Decision Making in Life-Sustaining Medical neatment Cases (St. Paul, Minn.: West, 1993), Guideline 4, “Parties and Notice.” 116 Wesdving Disputes Over Life-Sustaining Treatment regulate the content and sources of evidence and the manner in which evidence is introduced at trial. For example, a physician who qualifies as an expert witness in cardiology may be prohibited from testifymg about a new cancer treatment unless he or she also qualifies as an expert in oncology. One procedural constraint that health care providers often misunderstand is neither party is permitted to communicate directly with the judge unless the other party is present. This prohibition on ex parte communications ensures that both parties have an opportunity to fully present their cases to an impartial judge and to challenge the assertions of the opposing party. On occasion, the judge may request additional information to be presented at trial. To do this, the judge may appoint a guardian ad litem or an independent expert to conduct an investigation and report the findings to the court. Similarly, the judge may ask the parties to generate additional information. Because the judge often finds this supplemental information valuable in reaching a fair and well-reasoned decision, all parties should cooperate with the person assigned to collect this information. Other individuals who are not initially parties to the lawsuit may have a particular interest in the case or may believe they have information of which the judge should be aware when making a decision. Although these individuals may represent extreme positions or may not be directly associated with the parties, their participation may supplement the information that is presented to the court. To participate fully in the lawsuit, they may ask the court to name them as a party. Alternatively, they may ask the court to recognize them as an amicus curiae (“a friend of the court”), permitting them to provide information in the form of an amicus curiae brief. In either case, rules of procedure will guide the judge’s decision about whether to permit these individuals to participate.

Convenience adAccessibiPity Some health care providers argue that these proceedings would be more efficient and convenient if they were held on site at the health care organization rather than in the courtroom. Although exceptions Judicial Involvement in Disputes 117 are sometimes made (eg, to permit a patient to participate in the proceeding), courts do not routinely grant requests for on-site hearings. A part of judges’ reluctance is purely pragmatic: transporting the court, including court reporters, bailiffs, and other court personnel, into the health care organization is a logistically cumbersome process. A more critical concern for judges, however, is the preservation of judicial independence and objectivity. On-site hearings, especially in disputes between the family and caregivers, may appear to bias the court in favor of the organization or inappropriately intimidate patients and family members. Furthermore, the relative formality, dignity, and decorum of the courtroom may be particularly useful for interjecting and promoting civility, restraint, truthfulness, and a greater degree of reasonableness into the interactions among the litigants. Most states permit physicians to exercise their professional judgment when faced with a medical emergency that seriously threatens the life or health of a patient. When judicial assistance is required, many courts have an emergency docket or special procedures (e.g., telephone hearings) for communicating with the court on an emergency basis. Health care providers should recognize, however, that the court may respond cautiously to emergency petitions. Under emergency conditions, the issues may be only partially briefed or explored, interested persons may not have been notified or invited to participate, and the relevant evidence may not be gathered yet. In addition, emergencies may trigger emotional reactions and positions that are later withdrawn or regretted. All of these possibilities may jeopardize the court’s ability to engage in careful, reasoned decision malung. Ac- cordingly, these avenues should be used sparingly and only in actual medical emergencies.

Publicity and Open Courts Courts generally are sensitive to the privacy concerns of litigants and often consider requests to minimize intrusions on this privacy. Nevertheless, courts also have an obligation to ensure public access to judicial proceedings. Closed hearings, sealed court records, and other means of keeping judicial proceedings from public view tend to undermine public confidence in the courts. This leads to increased misun- 118 ResoMmg Disputes Over Life-Sustaining Treatment derstanding and frustration by the communities in which the courts function. In addition, it prevents other individuals from learning from the experiences of the litigants. Organization administrators and health care providers can pro- pose alternatives that will help protect the privacy of the litigants. For example, the court and litigants may refer to the patient or other relevant individuals by their initials or by another appropriate pseud- onym (e.g., “John Doe” or “Jane Doe”). Health care providers and administrators may also ask media to cooperate in respecting the patient’s privacy or request that media access be limited to a pool reporter. Glossary 119

advance directives: Written or verbal instructions about future medical treatment that an individual with decision-malungcapacity would like his or her health care providers to follow in the event that he or she loses decision- malung capacity. An advance directive may specify medical treatment the individual consents to or refuses, a surrogate decision maker, or both. See also durable power of attorney, living will. adversarial process: In law, a method of resolving disputes in which the opposing parties present their versions of the dispute to a neutral third party (judge/jury).The neutral third party then resolves the dispute by discerning the facts of the dispute and applying the relevant law to those facts. alternative dispute resolution: A broad range of processes designed to assist parties in resolving differences outside of a courtroom setting. Alterna- tive dispute resolution processes include arbitration, conciliation, mediation, negotiation, and the use of an ombudsman. amicus curiae: Literally “friend of the court.” In law, the term refers to an individual or entity who is not a party to a lawsuit but to which the court grants permission to submit written commentary on the merits of the suit, called an amicus curiae brief. artificial nutrition and hydration: Supplying food and water through a conduit such as a tube or intravenous line, whereby the recipient is not required to chew or swallow. Methods include nasogastric tubes, gastrotomies,

This glossary is adapted from Congress of the United States, Office of Technology Assessment, fife-Sustaining Technologies and the Elderly (Washington:U.S. Govern- ment Printing Office, 1987); Cook County State’s Attorney’s Office, “Report of the Cook County State’s Attorney’s Task Force on the Foregoing of Life-SustainingTreat- ment” (1990);Nancy N. Dubler and Leonard J. Marcus, Mediating Bioehcal Dis- putes: A Practical Guide (NewYork United Hospital Fund of New York, 1994); and Coordinating Council on Life-Sustaining Medical Treatment Decision Making by the Courts, Guidelines for State Court Decision Making in fife-Sustaining Medical neat- rnent Cases (St. Paul, Minn.: West, 1993J. 120 Resolving Disputes Over kik-Sustaining Treatment and intravenous infusions. Artificial nutrition and hydration does not include assisted oral feeding such as spoon or bottle feeding. attending physiciam: The physician who has primary responsibility for the treatment and care of the patient. autonomy: The ethical principle that independent actions and choices of an individual should not be constrained by others. best interest standard: A standard to guide surrogate decision malung by which the surrogate decides on a course of action based on the best interests of the patient. Best interests are often described as the likely preferences of a hypothetical “reasonable person” in the patient’s circumstances. Compare substituted judgment standard. capacity: See decision-makmg capacity. case law: In law, the aggregate of reported court opinions on a particular subject. Compare statute, regulation, court rules. chromic illmess: An illness characterized by extended duration or frequent recurrence, and slow development. Chronic illnesses vary in severity and their impact on a person’s functional capacity. Some chronic illnesses are life-threatening and require continual medical treatment. cognitive ability: The ability to comprehend, remember, reason, and judge information. competency: A legal term that refers to the condition of being capable of making and articulating rational decisions. Unless a court of law determines otherwise, individuals over the age of eighteen are presumed to be “legally competent.” See also incompetency. court rules: Laws enacted by the judiciary to govern how the courts in a given jurisdiction will manage the cases that are brought before them. Com- pare case law, regulation, statute. critically ill: A patient who is experiencing an acute life-threatening episode or who is believed to be in imminent danger of such an episode. A critically ill patient is medically unstable, and his or her condition, if not treated, is likely to decline. death: According to customary medical practice and state law, an irreversible cessation of heartbeat and respiration or an irreversible cessation of total brain function. decisiom-making capacity: The ability to understand and appreciate the nature and consequences of a decision about forgoing life-sustaining medical treatment, and the ability to reach and communicate an informed decision in the matter. diagmosis: A determination about the specific nature of a patient’s illness or injury based on an examination of his or her symptoms. discovery: In law, the period before trial during which parties to a lawsuit exchange information sufficient to communicate to one another their respective positions concerning the merits of the case. Glossary 121

do-not-resuscitate (DNR) order: A directive by a physician to withhold cardiopulmonary resuscitation in the event that a patient experiences cardiac or respiratory arrest. Also called “no code.” durable power of attorney: A legal document empowering a designated person to act on another person’s behalf. Unlike the traditional power of attorney, the “durable” power does not become inoperative if the person who executed it loses decision-malung capacity. Origmally intended to permit financial or property transactions, durable powers of attorney allow an individual to delegate medical decision-making authority in the event that he or she loses decision-malung capacity in the future. emancipated minor: Generally, persons under the age of eighteen who have married, enlisted in the armed services, made avalid declaration of emancipation, established their independence, or obtained the consent of their parents to assume this status. If a minor is emancipated under state law, the minor is treated as an adult for purposes of health care decision making. See also mature minor and nonmature minor. ethics committee: Consultative committee in a health care organization whose role is to analyze ethical dilemmas and to advise and educate health care providers, patients, and families about difficult treatment decisions. ethics consultant: Individual used by a health care organization to analyze ethical dilemmas and to advise and educate health care providers, patients, and families about difficult treatment decisions. ex parte: In law, the practice of contacting the court for the purpose of communicating information that is relevant to the merits of a case without informing the opposing party of the communication or providing an opportunity for the opposing party to rebut the information. family: Individuals who are related to the patient by blood or marriage. Most recent formulations of medical ethcs also recognize friends as legitimate members of the patient’s family. family consent laws: Statutes that empower a family member to make decisions for a patient lacking decision-malung capacity without first securing judicial authorization. See also guardian. guardian:A person appointed by a court to protect the interests of a person lacking decision-malung capacity. guardian ad litem: A special guardian appointed by a court to provide legal services for a minor or an individual without decision-making capacity. The guardian ad litem is considered to be an officer of the court and is charged with representing the interests of the minor or the individual. In a judicial proceeding involving life-sustaining medical treatment decisions, the court may appoint a guardian ad litem to represent or act on behalf of the patient. The court may request the guardian ad litem to conduct an independent investigation and to report how the patient’s interests may be affected by the court’s decision. 122 Resolviang Disputes Over Life-Sustaining Treatment

health care organizations: Organizations that provide health care for patients, including hospitals and other acute-care facilities; sub-acute-care and rehabilitation facilities; long-term care facilities such as nursing homes, hospices, and home health care systems; managed care systems; and other organizations that provide direct care services. health care provider: An individual or legal entity who is licensed, certi- fied, or otherwise authorized by law to administer health care in the ordinary practice of a profession. health care proxy: A person appointed by a patient with decision-malung capacity to make decisions about medical care in the event that the patient subsequently becomes incapable of malung those decisions. See also surrogate decision maker. home health care: Health care services that are delivered to the patient in his or her own home. Because home health services are typically provided on a periodic basis (e.g., once or twice daily), patients must be sufficiently independent to remain unsupervised in the home or must be supervised by a full- time care provider (usually a family member). hospice: A method of care that provides palliative care and related sup- portive medical and social services for dying individuals and their families. Hospice services can be provided in the patient’s home, a nursing home, a hospital, or a special hospice facility. petency: A legal term that refers to being determined by a court to be unable to make and articulate rational decisions. See also competency. informed consent A legal term that refers to a person’s consent to a proposed medical treatment after receiving information relevant to that decision. The information ordinarily includes diagnosis, prognosis, nature and purpose of the proposed treatment, its risks, consequences, and feasible alternatives, and the probability that it will be successful. intensive care unit (HCW):A special hospital unit for complex treatment and continuous monitoring of critically ill patients. life-sustainingmedical treatment: Drugs, medical devices, or procedures, including artificial nutrition and hydration, that can keep individuals alive who would otherwise die within a foreseeable, though usually uncertain, time. living will: A document in which a person with decision-makingcapacity expresses his or her wish to receive or not receive certain life-sustaining treatments in the event that he or she becomes terminally ill and loses decision- making capacity in the future. long-term care: Health care services provided by a facility or organization for patients whose physiological conditions are such that they require continued medical supervision (often by skilled nursing staff), but are not sufficiently severe to warrant delivery of health care services in an acute-care setting. mature minor: A patient under the age of eighteen who is able to understand the nature and consequences of proposed medical treatment, evaluate his or her treatment options (includingalternative outcomes), and make vol- Glossary 123 untary decisions regarding these options (includingthe option of nontreatment). In some states, a mature minor has an ability equivalent to that of an adult to make decisions about certain medical treatments. mediation: A voluntary process that uses an unbiased neutral party to facilitate negotiation and conflict resolution between disputing parties. negotiation:An informal, structured process used by disputants to reach agreement, without the assistance of a third-party neutral. nonmature minor: a minor that is neither an emancipated minor nor a mature minor. See also emancipated minor, mature minor. notice: In law, the practice of informing an opposing party that claims, motions, or other documents concerning a pending case have been filed with the court. ombudsman:An official office or individual, often appointed or employed by government, with which patients or family members may file grievances pertaining to health care services. palliative care: Care intended to keep a patient comfortable by relieving symptomatic discomfort and suffering, but not intended to prolong life. patient: The direct recipient of health care services, regardless of the facility or organization providing these services. May also be referred to as a client or resident, particularly in non-acute-care settings, or a health care consumer. patient representative:Any person chosen by the patient (or the patient’s surrogate) to promote the patient’s interests. Some health care organizations employ “patient representatives”as consumer advocates within the organization. See also ombudsman. Patient Self-DeterminationAct: A federal statute that, in part, requires all hospitals, nursing homes, and health maintenance organizations that receive federal funds to ask all patients if they have an advance directive and to offer them the opportunity to execute one if they have not done so previously. 42 U.S.C. $5 1395 et seq. prognosis: A judgment about the likely course and probable outcome of an illness or injury based on knowledge of the facts of a particular case. proxy: See health care proxy. regulation: Law created by a state or federal administrative agency under the executive branch of government to govern the persons or organizations over which the agency has legal authority. Legal authority generally is con- ferred by statute. Compare case law, statute, court rules. resuscitation: Procedures for the restoration of heart rhythm and maintenance of blood flow and breathing following cardiac or respiratory arrest. risk management:The administrative office of a health care organization that is responsible for quality assurance and serious incident registry and re- porting. It acts to protect the hospital from future liability by responding to individual patient care incidents and disputes in order to defuse disagreement and encourage settlement of disputes. n 24 Resolvimg Disputes Over Life-SustainingTkeatment

rules of evidence: In law, the rules that determine the content and sources of evidence that may be introduced at trial and the manner in which the parties may present that evidence during trial. rules of gr~cedure:In law, the regulations established by a court or legislature that determine the means by which individuals may initiate and proceed with a lawsuit in that court. statute: Law created by state or federal legislature. Compare case law, regulation, court rules. s~nbstitantedjudgment standard: A standard for surrogate decision making by which the surrogate decides on a course of action based on the patient’s personal values and preferences. Compare best interest standard. surrogate decision maker: A person who is designated to make decisions on behalf of a person who lacks the capacity to make decisions. A surrogate decision maker may be selected by the patient in advance of a loss of decision- malung capacity by means of a durable power of attorney or living will or may be selected after a patient loses decision-malung capacity, according to state law. terminally ill: A person whose death is expected soon, based on the diagnosis of an illness that has a predictably fatal progression and that cannot be stopped by any known treatment. The definition of soon ranges from hours to a year or more. unbedriended patient: an incapacitated patient who does not have a family member or friend available and willing to act as a surrogate decision maker. Examples of State-Mandated Models for Resolving Disagreements 125

Examples of State-Mandated Models for Resolving Disagreements

Descriptions of state-mandated models for resolving disagreements about life-sustaining medical treatment follow. Generally, these models are designed for specific types of health care organizations, and often for special needs. The applicable laws, regulations, and practices relevant to decision malung also vary from state to state. Furthermore, as this book explains, health care organizations have demonstrated considerable flexibility and creativity in adapting these models. As a result, these examples will not, and probably should not, apply univer- sally. They merely illustrate different approaches that might be applicable in other contexts or settings. / In New York, state law establishes the model that must be used to mediate disputes regarding the issuance of orders not to resuscitate. N.Y. Pub. Health Law 5 2972 (Consol. 1994). Under this model, a dispute resolution mechanism must be described in writing and adopted by the hospital’s governing authority. The mechanism may use existing resources at the health care organization, such as a patient advocate’s office or a chaplain’s office, or a mechanism may be created specifically for this purpose. However, when a dispute involves a patient who lacks decision-malung capacity, the mechanism must include a physician qualified to provide a concurring determination of the patient’s lack of capacity or a family member or guardian of a person with a similar disabling condition. After a dispute is submitted to this mechanism, the mechanism is provided up to seventy-two hours to mediate the dispute. The persons providing the mediation do not have the authority to determine the outcome. Persons participating in this process must be informed of their right to judicial review, which is expressly established by statute. N.Y. Pub. Health Law 5 2973 (Consol. 1994).Parties authorized to pursue 126 Wesohhg Disputes Over Life-Sustaining Treatment judicial review include the patient; an attending physician; a parent, noncustodial parent, or legal guardian of a minor patient; any person on the surrogate list; the hospital that is caring for the patient; and, in disputes involving a patient who is in or is transferred from a mental hygiene or correctional facility, the facility director. Judicial review of a patient’s or surrogate’s refusal to authorize a DNR order is not permitted unless the person challenging the refusal can show, by clear and convincing evidence, that the decision is contrary to the patient’s wishes or, absent evidence of the patient’s wishes, that the decision is contrary to the patient’s best interests. Another model established in Minnesota permits any patient of a hospital or outpatient surgery center or the patient’s representative to submit oral or written complaints to a required health care organization grievance mechanism. Minn. Code R. 4680.0 100 to .1300 ( 1994). Written notice of the availability of the grievance mechanism and whom to contact must be posted conspicuously in all such facilities and, except in emergencies, given to all patients or the patients’ representatives upon admission. Someone authorized to receive these complaints must be physically present within the facility and able to receive complaints during ordinary business hours and, for oral complaints, must provide the person submitting the complaint with a best estimate of when the facility will respond to the complaint. Response to a complaint or notice of the resolution of the complaint must be provided to the person submitting the complaint as soon as possible and in writing on request. The organization must keep records of all complaints for one year, including when the complaint was submitted, the substance of the complaint, a reference to any previous complaints involving this patient made during the patient’s current stay in the facility, and the time and substance of the response or resolution of the complaint. The records are to be compiled so that identification of particular patients and complainants is possible, and an annual summary report is to be provided to the commissioner of health. Minnesota has also required that health maintenance organizations operating in that state provide an internal complaint system, which must provide for initial informal negotiations and a written decision within thirty days. Minn. Admin. Code R. 4685.0100, .1700 (1994).They must also provide a right to appeal (with the option of a Examples of State-Mandated Models for Resolving Disagreements 127 hearing or a written reconsideration by the health maintenance organization) and a right to impartial arbitration. Maryland requires each hospital and related institution in the state to establish a patient care advisory committee and to develop written procedures to govern its functioning. Md. Code Ann., Health-Gen. 5 19-370-374 (1994).Each hospital must have its own committee, but at other institutions, the advisory committee can function solely within that institution, jointly with a hospital advisory committee or with an advisory committee representing no more than thirty other related institutions. Each advisory committee must include at least a physician and a registered nurse not directly involved with the care of the patient in question, a social worker, and the chief executive officer [or designee) from each facility represented on that committee. The committee may include other individuals, including representatives of the community, ethical advisors, or clergy. At the request of a petitioner, the committee is to provide advice in cases involving patients with life-threatening conditions. The petition may come from individuals who are “responsible for malung a decision with a medical consequence for a patient,” which is limited to a patient, a physician, a registered nurse, a social worker, a family member, a guardian, an individual with a health care power of attorney, or any other health care practitioner directly involved in the care of the patient. Generally, the committee is to consult all members of the patient’s treatment team, the patient, and the patient’s family. The advisory committee is to give advice concerning the options for medical care and treatment. It also must notify the patient, the patient’s immediate family members, the patient’s guardian, and an individual with a health care power of attorney of the individual’s right to be a petitioner, to meet with the advisory committee, and to receive an explanation of the basis for the committee’s advice. The committee must give precedence to any information or document that indicates the wishes of the patient. The advice of the committee is to be placed in the patient’s medical record. The advisory committee also educates facility staff, patients, and patients’ families concerning decision malung and reviews and recommends facility policies and guidelines concerning the withholding of medical treatment. The statute also includes provisions concerning 128 Resolviang Disputes Over Life-Sustaining Treatment

(1)the immunity from liability of the advisory committee members, the committee, the persons who establish the committee, and the facility and (2)the confidentiality of the committee’s proceedings, deliberations, and advice. Although not a formal model, Colorado establishes in relative de- tail the procedures for determining who may act as the patient’s surrogate (designated in the statute as a ”proxy decision-maker”) when a patient who lacks decision-malung capacity has not appointed a surrogate, when a guardian has not been appointed for the patient, and when no other known person has legal authority to make health care decisions. Colo. Rev. Stat. 5 15-18.5-103(1994). Under this approach, the attending physician initially determines that the patient lacks decision-malungcapacity and makes specific findings regarding the cause, nature, and projected duration of the patient’s lack of decision-making capacity. This determination and these findings must be placed in the patient’s medical record. Upon malung this determination, the attending physician (or the physician’s designee) is to make reasonable efforts to locate as many “interested persons” as practicable. The list of possible candidates includes the patient’s spouse, parent, adult child or grandchild, sibling, or close friend. These individuals can be relied on to notify other family members or interested persons. Once the interested persons are aware of the patient’s lack of decision-making capacity and the need for a surrogate decision maker, it is then up to the interested persons to make reasonable efforts to reach a consensus on who among them shall make medical treatment decisions on behalf of the patient. The statute requires that the person selected have a close relationship with the patient and be the person most likely to be currently informed of the patient’s wishes. If the interested persons are unable to reach a consensus or if any of the interested persons disagree with the selec- tion or the decisions reached, then guardianship proceedings may be initiated by any of the interested persons. Throughout this process, the attending physician is to make reasonable efforts to inform the patient of the determination that he or she lacks decision-malung capacity, the identity of the surrogate, and the patient’s right to object. Special certification from two physicians is required before the surrogate can withhold or withdraw artificial nourishment and hydration. Examples of State-Mandated Models for Resolving Disagreements 129

The assistance of the health care organization’s ethics committee is to be provided upon the request of the surrogate or any of the interested persons. If the organization does not have an ethics committee, the facility may provide an outside referral for assistance or consultation. In New Jersey, a series of judicial opinions established procedural guidelines for end-of-life decisions. See, for example, In re Quidan, 355 A.2d 647 (N.J.1976); In re lobes, 529 A.2d 434 (N.J. 1987); and In re Conroy, 486 A.2d 1209 (N.J. 1985). Finally, federal legislation that took effect December 1, 1991-the Patient Self-Determination Act-encourages the use of advance directives. 42 U.S.C. 5 1395cc(f)(1). It requires health care facilities receiving Medicare or Medicaid funding to provide written information to patients upon admission regarding (1)their rights under state law to accept or refuse medical or surgical treatment, (2)their rights to formulate advance directives, and (3)the written policies of the facility respecting the implementation of those rights. These facilities also are required to document in the patient’s medical record whether the patient has executed an advance directive, are forbidden to discriminate on the basis of whether a patient has or has not executed a directive, and are required to ensure compliance with state law concerning advance directives.

Bibliography 13 1

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Weir, Robert E Abating Treatment with Critically Ill Patients: Ethical and Le- gal Limits to the Medcal Prolongation of Life. New York Oxford Univer- sity Press, 1989.

Advance Directives

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Do-Not-Resuscitate Orders Emanuel, Linda L. “Does the DNR Order Need Life-Sustaining Intervention? Time for Comprehensive Advance Directives.”American Iournal of Medi- cine 86 (January 1989): 87. Ganzini, Linda, M. A. Lee, R. T. Heintz, and J. D. Bloom. “Do-Not-Resusci- tate Orders for Depressed Psychiatric Inpatients.” Hospital and Commu- nity Psychatry 43 (September 1992): 9 15. Murphy, Donald J., et al. “The Influence of the Probability of Survival on Patients’ Preferences Regarding Cardiopulmonary Resuscitation.” The New England Journal of Medzcine 330 (February 24, 1994): 545. Swartz, Conrad M., and Carole Stewart. “Melancholia and Orders to Restrict Resuscitation.” Hospital and Community Psychiatry 42 (February 199 1): 189. Torian, Lucia I?, et al. “Decisions For and Against Resuscitation in an Acute Geriatric Medicine Unit Serving the Frail Elderly.” Archives of Internal Mechine 152 [March 1992): 561. Youngner, Stuart J. “Do-Not-Resuscitate Orders: No Longer Secret, But Still a Problem.” Hustings Center Report, February 1987: 24.

Durable Power of Attorney Hollander, Jill. “Health Care Proxies: New York‘s Attempt to Resolve the Right to Die Dilemma.” Brooklyn Law Review 57 (1991):145. Roe, Joy M., Mary K. Goldstein, Kelly Massey, and Dennis Pascoe. “Durable Power of Attorney for Health Care: A Survey of Senior Center Partici- pants.”Archives of Internal Medicine 152 (February 1992):292.

Patient Self-Determination Act of 1990 American Association of Homes for the Aging. “Technical Assistance Brief Patient Self-Determination Act of 1990: Implementation Issues.” 1991. Department of Health and Human Services, Office of Inspector General. Pa- tient Advance Directives: Early Implementa tion Experience. Washington: Department of Health and Human Services, 1993. LaPuma, John, David Orentlicher, and Robert J. Moss. ’Advance Directives on Admission: Clinical Implications and Analysis of the Patient Self-De- terminationAct of 199O.”IAMA 266 (July 17, 1991):402. Sabatino, Charles P. “The New Uniform Health Care Decisions Act: Paving a Health Care Decisions Superhighway?”Maryland Law Review 53 ( 1994): 1238. 134 Resohhg Disputes @er Life-Sustaining Treatment

. Statement on Behalf of the American Bar Association Before the Sub- committee on Health Ways and Means Committeeof the United States House of Representatives on the Subject of The Patient Self Determina- tion Act of 1990. Washington: U.S. Government Printing Office, 1990. Spielman, Bethany. “Patient Decisions and Psychiatric Hospitals: Quandaries of the Patient Self Determination Act.” Developments in Mental Health Law 12 (1992): 1. Teno, Joan M., et al. “The Impact of the Patient Self-Determination Act’s Requirement that States Describe Law Concerning Patients’ Rights.” The /ournu1 of Law, Medicine & Etlucs 21 (1993):102. White, Margot L., and John C. Fletcher. “The Patient Self-DeterminationAct: On Balance, More Help Than Hindrance.” /AMA 266 (July 17, 1991): 410. Wolf, Susan M., et al. “Sources of Concern About the Patient Self-Determina- tionAct.”The NewEngland /ournu1 ofMedicine 325 (December5, 1991): 1666.

American Bar Association, Commission on Legal Problems of the Elderly. “Report to the House of Delegates.” 1990. Duffy, Thomas F? “When to Let Go.” The New England Journal of Medcine 326 (April 2, 1992):933. Finkel, Norman J., Marie L. Hurabiell, and Kevin C. Hughes. “Competency, and Other Constructs, in Right to Die Cases.” Behavioral Sciences and the Law 11 (1992):135. Haimowitz, Stephan, and Robin A. Goldman. “A Patient Returns from ’Death with Dignity’: Error, Uncertainty and the hght to Die.” New York State Bar Journal, October 1990: 58. McCrary, S. Van, and A. Terry Walman. “Procedural Paternalism in Compe- tency Determination.” Law, Medicine &Health Care 18 (1990): 108. Spielman, Bethany. ”Patient Decisions and Psychiatric Hospitals: Quandaries of the Patient Self Determination Act.” Developments in Mental Health Law 12 (1992):1.

ecisiom Making American Bar Association, Commission on Legal Problems of the Elderly. Guardanship of the Elderly: A Primer for Attorneys. Chicago: American Bar Association, 1990. Areen, Judith. “The Legal Status of Consent Obtained from Families of Adult Patients to Withhold or WithdrawTreatment.”JAMA258 (July10, 1987): 229. Bibliography 135

Bopp, James, and Daniel Ada. “Perspectives on Cruzan: The Sirens’ Lure of Invented Consent: A Critique of Autonomy-Based Surrogate Decision- Making for Legally-IncapacitatedOlder Persons.” Hustings Law Journal 42 (1991):779. Emanuel, Ezekiel J., and Linda L. Emanuel. “Proxy Decision Making for In- competent Patients: An Ethical and Empirical Analysis.”JAMA267 (April 15, 1992):2067. Hare, Jan, Clara Pratt, and Carrie Nelson. ”Agreement Between Patients and Their Self-selected Surrogates on Difficult Medical Decisions.”Archives of InternalMedicine 152 (May 1992): 1049. Harmon, Louise. “Falling Off the Vine: Legal Fictions and the Doctrine of Substituted Judgment.” Yale Law Journal 100 ( 1990): 1. Liacos, Paul J. “Different Viewpoints: Is ‘Substituted Judgment’ a Valid Legal Concept?”Issues in Law and Medicine 5 (1989):215. Lynn, Joanne. “Procedures for Making Medical Decisions for Incompetent Adults.” JAMA 267 (April 15, 1992): 2082. Quinn, Kevin l? “The Best Interests of Incompetent Patients: The Capacity for Interpersonal Relationships as a Standard for Decision-Making.”Cali- fornia Law Review 76 (1988):897. Rich, Ben A. “The Values History: A New Standard of Care.” Emory Law 1ournal40 (1991):1109. Richard, Steven M. “Someone Make Up My Mind: The Troubling kght to Die Issues Presented by Incompetent Patients with No Prior Expression of a Treatment Preference.”Notre Dame Law Review 64 (1989):394. Weir, Robert E, and Larry Gostin. “Decisions to Abate Life-Sustaining Treat- ment for Non-Autonomous Patients.”JAMA264 (October 10, 1990):1846. Yuen, Michele. “Letting Daddy Die: Adopting New Standards for Surrogate Decision-Making.”UCLA Law Review 39 (1992):581.

Relationships Among Decision Makers

Patient-Health Care Provider Relationships American Nurses Association. Compendium of Physician Statements on the Nurse’s Role in End-of-Life Decisions. Washington: American Nurses As- sociation, 1992. Asch, David A., John Mansen-Flaaschen, and Paul N. Lanken. “Decisions to Limit or Continue Life-Sustaining Treatment by Critical Care Physicians in the United States: Conflicts Between Physicians’ Practices and Patients’ Wishes.”American lournal of Respiratory and Critical Care Medicine 151 (1995):288. Campbell, Margaret L. “Breaking Bad News to Patients.” JAMA 271 (April 6, 1994): 1052. 136 Resohinag Dispu~esOver Life-Sustaining Treatment

Emanuel, Ezeluel J., and Linda L. Emanuel. “Four Models of the Physician- Patient Relationship.” JAMA 267 (April 22, 1992):222 1. Loftus, Irene Prior. “I Have a Conscience, Too: The Plight of Medical Person- nel Confronting the Right to Die.” Notre Dame Law Review 65 [ 1990): 699. McIntyre, Kevin M. “Shepherding the Patient’s Right to Self-Determination: The Physician’s Dawning Role.” Archives of Internal Medicine 152 (Feb- ruary 1992):259. Minow, Martha. “Who’s the Patient?”Mary~mdLaw Review 53 (1994):1 173. Nazario, Sonia L. “Medical Science Seeks a Cure for Doctors Suffering from Boorish Bedside Manner.” The Wall Street Tournal, March 17, 1992, B5. Perluns, Henry S., and Bunnie S. Saathoff. “Impact of Medical Ethics Consul- tations on Physicians: An Exploratory Study.” American Journal of Medi- cine 85 (December 1988): 761. The President’s Commission for the Study of Ethcal Problems in Medicine and Biomedical and Behavioral Research. Making Health Care Decisions: A Report on the Ethzcal and Legal Implications of Informed Consent in the Patient-PractitionerRelationshzp. Washington: U.S. Government Print- ing Office, 1982. Rozovsky, Fay A. Consent to Treatment: A Practical Guide. Boston: Little, Brown & Company, 1984. Tarantino, Lynda M. “Withdrawal of Life Support: Conflict Among Patient Wishes, Family, Physicians, Courts and Statutes, and the Law.” Buffalo Law Review 42 (1994):623. Wanzer, Sidney H., et al. “The Physician’s Responsibility Toward Hopelessly I11 Patients.” The NewEngland ]ownu1 of Medicine 310 (April 12, 1984): 955. PatienU-Pamdy WehUiB’onship Danis, Marion, Donald L. Patrick, Leslie I. Southerland, and Michael L. Green. “Patients’ and Families’ Preferences for Medical Intensive Care.” )AMX 260 (August 12, 1988): 797. Glover, Jacqueline J. “Should Families Make Health Care Decisions?” Mary- land Law Review 53 (1994): 1158. Hare, Jan, Clara Pratt, and Carrie Nelson. “Agreement Between Patients and Their Self-selected Surrogates on Difficult Medical Decisions.” Archives ofhternalnlledicine 152 (May 1992): 1049. Krasik, Elaine B. “Comment: The Role of the Family in Medical Decision- Making for Incompetent Adult Patients: A Historical Perspective and Case Analysis.” University of Rttsburgh Law Review 48 (1987):539. Tarantino, Lynda M. “Withdrawal of Life Support: Conflict Among Patient Wishes, Family, Physicians, Courts and Statutes, and the Law.” Buffalo Law Review 42 (1994):623. Bibliography 137

Decision Making and Children American Academy of Pediatrics, Committee on Bioethics. “Informed Con- sent, Parental Permission, and Assent in Pediatric Practice.’’February 1995. Clark, Frank I. “Withdrawal of Life-support in the Newborn: Whose Baby is it?”Juvenile and Fady Court Journal45 (1994):29. Coulter, David L. “Neurologic Uncertainty in Newborn Intensive Care.” The New England /ournal of Medicine 316 (April 2, 1987):840. Duff, R. S., and A. G. M. Campbell. “Moral and Ethical Dilemmas in the Special-CareNursery.” The New Endand Journal ofMedicine 289 (1973): 890. Kopelman, Loretta M., Thomas G. Irons, and Arthur E. Kopelman. “Neona- tologists Judge the ‘Baby Doe’ Regulations.”The New England Journal of Medicine 318 (1988):677. Rosenthal, Elisabeth. ‘!As More Tiny Infants Live, Choices and Burden Grow.” The New York Times, September 29, 1991, 1. Solnit, A. L., and M. H. Stark. “Mourning and the Birth of a Defective Child.” Psychoanalytic Study of the Chdd 16 (1961):523. Todres, I. David, Jeanne Guillemin, Michael Grodin, and Dick Batten. “Life- Saving Therapy for Newborns: A Questionnaire Survey in the State of Massachusetts.” Pediatrics 81 (1988):643. Weir, Robert. Selective Nontreatment of Handicapped Newborns. New York: Oxford University Press, 1984.

Specific Issues Regarding lkchnology and Treatment Congress of the United States, Office of Technology Assessment. kfe-Sus- tuining Technologiesand the Elderly. Washington: U.S. Government Print- ing Office, 1987. Levy, Michael H. “Living With Cancer: HospiceA’alliative Care.” Journal of the National Cancer Institute 85 (August 1993): 1283. Lynn, Joanne, ed. By No Extraorchary Means: The Choice to Forgo Life-Sus- tuining Food and Water. Bloomington: Indiana University Press, 1986. Printz, Louise A. “Terminal Dehydration, a Compassionate Treatment.” Ar- chves of Internal Medicine 152 (April 1992):697. Schneiderman, Lawrence J., and Roger G. Sprag. “Ethical Decisions in Dis- continuing Mechanical Ventilation.” The New England Journal of Me&- cine 318 (1988):984. Steinbrook, Robert, and Bernard Lo. ”Artificial Feeding: Solid Ground, Not a Slippery Slope.” The New England Journal of Medicine 3 18 (February 4, 1988):286. 138 Wesolvhg Disputes Over Life-Sustaining Treatment

Specific Issues Regarding Diagnoses and Prognoses American Academy of Neurology, Executive Board. ”Position of the American Academy of Neurology on Certain Aspects of the Care and Management of the Persistent Vegetative State Patient.” Neurology 39 (1989):125. Appel, Gerald B. “When Life Support is Questioned Early in the Care of Pa- tients with Cervical-Level Quadriplega.” The New England Journal of Medcine 328 (February 18, 19931: 506. Brody, Baruch A. “Ethical Questions Raised by the Persistent Vegetative Pa- tient.” Hustings Center Report, February/March 1988: 33. Cranford, Ronald E. “The Persistent Vegetative State: The Medical Reality (Getting the Facts Straight).” Hustings Center Report, February/March 1988: 27. . “Termination of Treatment in the Persistent Vegetative State.’’Semi- nars in Neurology 4 (March 1984):36. Paris, John J., Michael D. Schreiber, Mindy Statter, Robert Arensman, and Mark Siegler. “Beyond Autonomy-Physicians’ Refusal to Use Life-Pro- longing Extracorporeal Membrane Oxygenation.” The New England Jour- nul ofMedicine 329 (July 29, 1993): 354. Wachter, Robert M., John M. Luce, and Philip C. Hopewell. “Critical Care of Patients with AIDS.” JAMA 267 (January22, 1992):541. Wikler, Daniel. ”Not Dead, Not Dying? Ethical Categories and Persistent Veg- etative State.” Hustings Center Report, February/March 1988: 41.

Selected Public PsPicy Issues

Euthanasia Kamisar, Yale. “Some Non-Religious Views Against Proposed ‘Mercy-Rlling’ Legislation.” Minnesota Law Review 42 (1958):969. Pellegrino, Edmund D. “Ethics.”JAMA 261 (May 19, 1989):2843. . “Ethics.”/AMA 265 (June19, 1991):3118.

Health Care Costs and Resource Allocation Emanuel, Ezekiel J., and Linda L. Emanuel. “The Economics of Dying: The Illusion of Cost Savings at the End of Life.” The New England Journal of Medicine 330 (February 24, 1994):540. Webster, James R., and Celia Berdes. “Ethics and Economic Realities: Goals and Strategies for Care Toward the End of Life.”Archves of Internal Medi- cine 150 (September 1990): 1795. Bibliography 139

Medical $utility Lantos, John D., et al. “The Illusion of Futility in Clinical Practice.” Ameri- can [ournal of Medicine 87 (July1989): 81. Murphy, Donald J., and Elizabeth Barbour. “GUIDe (Guidelines for the Use of Intensive Care in Denver): A Community Effort to Define Futile and In- appropriate Care.” New HoVizons 2 (August 1994):326. Tmog, Robert D., Allan S. Brett, and Joel Frader. “The Problem with Futility.” The New England fournal of Medicine 326 11992):1560. Physician-Assisted Suicide Blendon, Robert J., et al. “Should Physicians Aid Their Patients in Dymg: The Public Perspective.” JAMA 267 (May 20, 1992):2658. Dickey, Nancy W “In Reply.” \AMA 256 (July 25, 1986): 471 (letter to the editor clarifying the AMA’s Council on Ethical and Judicial Affairs’ opinion on withholding or withdrawing life-prolonging medical treatment). Gaylin, Willard, Leon R. Kass, Edmund D. Pellegrino, and Mark Siegler. “DOC- tors Must Not fill.”JAMA 259 [April 8, 1988):2139. “It’s Over, Debbie.” JAMA 259 (January 8, 1988):272. Kass, Leon R. “Neither for Love Nor Money: Why Doctors Must Not fill.” The Public Interest, Winter 1989: 25. Lehr, Dick. “Increasingly, Secretly, Physicians are Helping the Incurably 111 to Die.” The Boston Globe, April 25, 1993, Metromegion 1. Miles, Steven H. “Honoring Requests to Die: To Kill or Not to Kill? . . . : Defining the Parameters of Policy.” American Society of Law, Medicine & Eth~csBriefings 1 1 ( 1994): 1. New York State Task Force on Life and the Law. “When Death is Sought: Assisted Suicide and Euthanasia in the Medical Context.” May 1994.

Institutional Policy American Association of Homes and Services for the Agtng. Making Ethical Decisions in Long-Term Care: A Collection of Monogruphs and White Pu- pers Produced for the AAHSA Commission on Ethics in Long-Term Cure. Washington: American Association of Homes and Services for the Aging, 1994. American Health Care Association. Health Care Decision-Making in Long Term Care Facilities: A Guide for Developing Policies and Procedures. Washington: American Health Care Association, 199 1. American Health Consultants. “JCAHORequires Hospitals to Address Ethi- cal Issues.”Medical Eth~csAdvisor 1 (1992):1. American Medical Association, Council on Ethical and JudicialAffairs. “Ethi- cal Issues in Managed Care.”JAMA 273 (1995):330. 140 ResoPviang Disputes Over Life-Sustaining ’Ikeatment

Kapp, Marshall B. “Medical Decisionmalung for Older Adults in Institutional Settings: Is Beneficence Dead in an Age of Risk Management?”Issues in Law and Medicine 11 (Summer 1995):29. McCrary, S. Van, and Jeffrey R. Botkin. “Hospital Policy on Advance Direc- tives: Do Institutions Ask Patients About Living Wills?”JAMA262 (1989): 2411. National Conference of Catholic Bishops. “Ethical and Religious Directives for Catholic Health Care Services.” 1994. Scanlon, Colleen. “Survey Yields Significant Results.”American Nurses Asso- ciation Center for Ethics and Human Rights Communipd 3 (Winter 1994): 1.

Ethics Committees Backlar, Patricia, and Bentson H. McFarland. “Ethics Committees in State Mental Hospitals: A National Survey.”Hospital and Community Psychutry 45 (June19943: 576. Brennan, Troyen A. “Ethics Committees and Decisions to Limit Care: The Experience at the Massachusetts General Hospital.” [M 260 (August 12, 1988): 803. Cushing, Maureen, Deborah J. Hall, Margaret L. Houy, and Ellen Comer Weiss. “The Role of Hospital Ethics Committees in Decisions to Termi- nate Treatment.” Boston Bar Journal 29 (MarcWApril 1985):22. Gibson and Kushner. ”Ethics Committees: How Are They Doing?”Hustings Center Report 16 (June1986): 3. Hoffmann, Diane E. “Regulating Ethics Committees in Health Care Institu- tions-Is It Time?”Maryland Law Review 50 (1991):746. Jaffe, Gregory A. “Institutional Ethics Committees: Legitimate and Impartial Review of Ethical Health Care Decisions.” The Journal of Legal Medicine 10 (1989):393. Robertson, John A. ”Ethics Committees in Hospitals: Alternative Structures and Responsibilities.” Qudty Review Bulletin 10 (1984):6. Ross, Judith W., Corrine Bayley, Vicki Michel, and Deborah Pugh. Handbook for Hospital Ethcs Committees. Chicago: American Hospital Publishing, 1986. Ross, Judith W, John W Glaser, Dorothy Rasinslu-Gregory, Joan M. Gibson, and Corrine Bayley. Health Cure Ethcs Comm’ttees: The Next Genera- tion. Chicago: American Hospital Publishing, 1993. Wolf, Susan M. “Ethics Committees and Due Process: Nesting Rights in a Community of Caring.”Marylund Law Review 50 (1991J: 798. . ”Toward a Theory of Process.”Law, Medicine &Health Cure 20 (Winter 1992):278. Bibliography 141

Legal Issues

General Cohen, Cynthia B., ed. Casebook on the Termination of Life-SustainingTreat- ment and the Care of the Dylng. Bloomington: Indiana University Press, 1988. ?Lapp, Marshall B., and Bernard Lo. “Legal Perceptions and Medical Decision Makmg.”Mdband Quarterly 64 (1986): 163. Prip, William, and Anna Moretti. “Compliance: The Missing Component in Patient Autonomy Laws.” Experience 6 (Spring 1996):4. Developments in Legal Theory Dawe, Timothy J. “Wrongful Life: Time for a ‘Day in Court.”’ Oh0 State Law loournu1 51 (1990):473. “Developments in the Law: Medical Technology and the Law.” Harvard Law Review 103 (1990):1519. Hasl, Julia. “Patient Autonomy and the Right to Refuse Treatment: Available Remedies.”Saint Louis University Law Journal 33 (1989):71 1. Kamisar, Yale. “Death, Dying, and the Right of Privacy: The ‘Rght to Die’: A Catchy but Confusing Slogan.”Mchigan Bar Journal 73 ( 1994): 184. Oddi, A. Samuel. “The Tort of Interference with the Right to Die: The Wrong- ful Living Cause of Action.” The Georgetown Law Journal 75 (1986): 625. Rich, Ben A. “The Assault on Privacy in Health Care Decision-Making.”Den- ver University Law Review 68 (1991):1. Sarno, Gregory G. Annotation, “Tortious Maintenance or Removal of Life Supports.” 58 A.L.R. 4th 222 (1987). Judicial Decision Making American Bar Association, Commission on Legal Problems of the Elderly. Recommended Guidelines for State Courts Handhng Cases Involving El- der Abuse. Chicago: American Bar Association, 1996. Commission on National Probate Court Standards. National Probate Court Standards. Williamsburg, Va.: National Center for State Courts, 1993. Coordinating Council on Life- Sustaining Medical Treatment Decision Mak- ing by the Courts. Guidelines for State Court Decision Making in Life- Sustaining Medcd Treatment Cases. St. Paul, Minn.: West, 1993. Flick, Michael R. “The Due Process of Dying.” CaLifornia Law Review 79 (1991):1121. Hafemeister, Thomas L., Ingo Keilitz, and Steven M. Banla “The Judicial Role in Life-SustainingMedical Treatment Decisions.”Issues in Law and Medcine 7 (1991):53. 142 Resohing Disputes Over Lifesustaining Treatment

Hodson, John D. Annotation, “Judicial Power to Order Discontinuance of Life-Sustaining Treatment.” 48 A.L.R. 4th 67 (1986). Hoefler, James M., and Brian E. Kamoie. “The Right to Die: State Courts Lead Where Legislatures Fear to Tread.” Law &Policy 14 (1992):337. Miles, Steven H., and Allison August. “Courts, Gender and ‘The Right to Die.”’ Law, Medicine &.Health Care 18 (1990):85. Parry, John W “The Court’s Role in Decision-MakingInvolving Incompetent Refusals of Life-Sustaining Care and Psychiatric Medications.” Mental and Physical Disabhty Law Reporter 14 (1990):468. Pollock, Stewart G. “Life and Death Decisions: Who Makes Them and By What Standards?”Rutgers Law Review 41 (1989):505. Rhoden, Nancy K. “The Limits of Legal Objectivity.” North Caroha Law Review 68 (1990):845. . “Litigating Life and Death.” Harvard Law Review 102 (1988):375. Roach, Cathleen A. “Paradoxand Pandora’s Box: The Tragedy of Current hght- To-Die Jurisprudence.” Universityof Michigan 1ournal of Law Reform 25 (1991):133. Rymer, Russ. “The Judge,”Hippocrates, May/June 1988: 54. Tarantino, Lynda M. “Withdrawal of Life Support: Conflict Among Patient Wishes, Family, Physicians, Courts and Statutes, and the Law.” Buffalo Law Review 42 (1994):623. Wood, Erica E Statement of Recommended [udcial Practices (Adopted by the National Conference of the Judiciary on Guardianshp Proceedings for the Elderly). Washington: Administration on Aging, Office of Human Devel- opment Services, 1986. Commentmy on Specific Court Decisions Annas, George J. “Transferring the Ethical Hot Potato.” Hustings Center Re- port, February 1987: 20. Balin, Frances E. “The Right to Refuse Treatment: Have We Gone Too Far?” Probate LawJournal8 (19871: 13. Bopp, James, and Daniel Avila. “Perspectives on Cruzan: The Sirens’ Lure of Invented Consent: A Critique of Autonomy-Based Surrogate Decision- Making for Legally-Incapacitated Older Persons.” Hustings Law 1ournal 42 (1991):779. Diamond, Margaret. “Echoes from Darkness: The Case of Angela C.” Univer- sityoffittsburgh LawReview 51 (19901: 1061. Fairman, R. Paul. “Withdrawing Life-Sustaining Treatment: Lessons from Nancy Cruzan.” Archives of Internal Medicine 152 (January 1992):25. Hafemeister, Thomas L. “Charting the Course Between Life and Death: The Supreme Court Takes Its First Cautious Steps in Cruzan.” Probate Law Journal 10 (1990):113. Orentlicher, David. “The Right to Die After Cruzan.” JAMA 264 (November 14, 1990):2444. Bibliography 143

Paris, John J., and Frank E. Reardon. “Court Responses to Withholding or Withdrawing Artificial Nutrition and Fluids.”JAIMA253’(April 19, 1985): 2243. Alternative Dispute Resolution Dubler, Nancy N., and Leonard J. Marcus. Medating Bioethical Disputes: A Practical Guide. New York: United Hospital Fund of New York, 1994. Hoffmann, Diane E. “Mediating Life and Death Decisions.”Arizona Law Re-

view 36 (1994):821. ’ Legislative/Executive Branch Cook County State’s Attorney’s Office. “Report of the Cook County State’s Attorney’s Task Force on the Foregoing of Life-Sustaining Treatment.” 1990. National Conference of Commissioners on Uniform State Laws. “Uniform Rights of the Terminally I11 Act.” 1989.

Index 145

Acute care settings, 30, 58 Best interests standard, 1911, 19-20, 25 Advance directives defined, 120 See also Do-not-resuscitate (DNR) Blood transfusions orders; Durable power of attor- for Jehovah’s Witnesses, 60, 72 ney; Living wills Brophy, Paul, 1 absence of See also Surrogate decision makers Capitation, 68 consequences of, 10 Case law categories of, 16 defined; 120 defined, 119 Case managers, 7 1 discussions with patient and family Chaplain, 54, 71 and, 40 Chart, patient federal and state laws on, 10, 1011, 15 ethics committee documentation and, in Patient Self-Determination Act, 91 129 Child abuse statutes, 36, 83n in principles of decision making, 12 Children medical costs and, 1611 See Minors timing of, 32n Chronic illness use of, 9 defined, 120 validity of, 33 Cognitive ability Adversarial process, 1 15 defined, 120 defined, 1 19 Colorado Alternative dispute resolution surrogate decision makers in See also Judicial procedures designation of, 128 defined, 119 Communication Amicus curiae, 1 16 See Discussions of medical treatment defined, 1 19 with patient and family Anderson v.St. Francis St. George Hosp., Compassion in Dying v. Washugton In pain management and, 64n Autonomy, 2, 84 Competency cultural beliefs about, 46 See also Incompetency defined, 120 v. decision-making capacity, 13-14, patient decision making and, 13, 15 104-105 principles of, 13 Conference of Chief Justices, 3 surrogate decision makmg and, 17-18 Confidentiality, 43-44, 84-85 See also Privacy Baby Doe regulations, 35-36, 106 ethics committee access to informa- Barber v. Superior Court, In tion and, 88-90 146 IResohimg Disputes Over Life-Sustaining ’Ikeatment

Conflicts of interest judicial as sources of disagreements, 25 See Judicial procedures Costs and, 68-69 patient as focus of, 30-33 in families, 25, 49, 86 principles of, 2, 9, 1 1- 13 See also under Family state-to-state variations in, 9-10 involving ethics committeeskonsult- uneventful, 1-2 ants, 94-95 Diagnosis with health care providers, 25, 69 defined, 120 with parents, 35-36, 86 Disagreements costs airing of, 44-45, 49-50 advance directives and, 16n at bedside conflicts of interest involving, 68-69 prevention and resolution of, 27- discussions of, 67-69 69 Court rules communication in, 27-50 defined, 120 complicating issues in, 60-69 Critically ill management of environment in, defined, 120 50-53 Cruzan, Nancy, 1,9 roles of participants in, 53-60 Cruzan v. Director, Missouri Depan- reasons for, 22-23 ment of Health, 9, 10 types of, 24-25, 103-107 Cultural factors warning signals of, 23-24 See also Diversity evaluation of family presence near patient and, 50 by health care providers, 76-77 values and beliefs of health care judicial involvement in, 103-107 providers and, 47 over patient’s decision-making capacity, 103-105 Death over patient’s treatment decision, defined, 120 105 Decision-malung capacity over surrogate’s treatment decision, defined, 31-32, 120 107 determination of, 104 over medically futile treatment, 7, 64- irresolvable disputes over, 103-105 66 lack of resolution of advance directives and, 12, 32-33 state-mandated models of, 125-29 See also Advance directives specialized personnel handling of, 7 1- defined, 3 1-32 72, 74-75 surrogate decision makers and, 10, Discovery, 115 12 defined, 120 See also Surrogate decision Discussions of medical treatment with makers patient and family, 36-37, 40 of minors, 14-15 boundaries of, 53-55 See also Minors information provided to, 43-44 v. competency, 13-14 level of, 40 v. incompetency, 104-105 location of, 5 1-52 Decision-making process, 13-15 nature of, 39-40 approaches to, 27-28 pace of, 40-41 costs and, 67-69 pain management and, 63 court involvement in, 10 1- 102 participants in, 48, 53-59 denial stage in, 41, 42 patient-centered focus of, 30-33 diversity and, 45-47 questions in, 37-39 ethical and legal limits on, 60-61 repetition of, 38 evolution of, 9- 11 role of expectation and hope in, 42- information needed for, 12 43 Index 147

Discussions of medical treatment with case consultations by patient and family (continued) controversy over, 73 team approach to, 38-39, 42 conflicts of interest involving, 94- timing of, 28-30 95 with minors, 33-36 cost issues and, 68 Diversity defined, 121 effect of on decision malung, 45-47 diversity issues and, 96 ethcs committee proceedings and, 96 educational aspects of, ,75, 78-80, 90, interaction with patient and family 98-99 and, 37 financial resources and accountability values and beliefs of health care of, 77 providers and, 47 functions and purposes of, 72-73 Do-not-resuscitate (DNR)orders, 7 health care providers and, 74-75, 77 See also Advance directives impartiality of, 80, 93-95 defined, 121 information needed by, 76-77, 88-90 disputes over mandatory referrals to, 8 1 mediation of, 125-26 patient consent and, 84-85 Drugs patient privacy and confidentiality addictive, 62 and, 89-90 for pain management, 62-64 policies and procedures of, 80-81, 89- Due process, 114 90 Durable power of attorney, 10, 16 controversy over, 98-99 See also Advance directives proceedings of, 81-88 defined, 121 family participation in, 85-86 for surrogate’s decision-malung power, patient participation in, 8 1-85 18 patient representative participation in, 87-88 Education staff participation in, 86-87 of ethics committee members visitors to about privacy and ethical issues, 90, privacy concerns and, 90 98-99 records maintained by, 90-92 of staff and patients responsibilities of, 89-99 about ethical issues, 75, 78-80 Ethnic factors about withholding of medical See Cultural factors; Diversity treatment, 127 Euthanasia, 7 by legal counsel, 78, 112 v. palliative care, 64, 64n Emergency docket, 11 7 Evidence Emotional aspects alternative methods of, 113 during litigation, 1 10 Ex parte family presence at health care facility defined, 121 and, 50-51 Ex parte communications, 1 16 in family discussions, 21, 49 Expert witness, 1 16 Ethical issues, 72, 74 education about, 78-79, 98-99 Family in discussions of costs, 68 as surrogate decision makers, 2, 10, in refusal to honor patient prefer- 16-17 ences, 60-61 conflicts of interest involving, 25, 49, v. legal issues, 78-79 86 Ethcs committeeskonsultants defined, 121 access to, 79-80 discussions with activities and roles of, 75 See Discussions of medical treat- advice of ment with patient and family communication of, 92-93 during litigation, 110 148 ResoPving Disputes Oven Life-Sustaining Tkeatment

Family (continued) Health care delivery effect of pain management on, 63 changes in, 2 1-22 emotional aspects of, 49 Health care organizations health care provider’s relationship defined, 122 with, 36-37, 55-58 management of disputes by, 2-3 boundaries of, 53-55 Health care power of attorney during litigation, 108-1 1 See Durable power of attorney in decision-making process, 56-57 Health care providers members of defined, 122 identification of, 55-56 discussions with participation of in ethcs committee See Discussions of medical treat- proceedings, 84-86, 97 ment with patient and family presence of near patient, 50-5 1 ethics committees and request for “futile” treatment by, 65- See Ethics committeeskonsultants 66 in decision-making process, 27-28 spokesperson for, 49, 54 information provided by, 12, 43-44 underlying tensions in, 49, 97 multiple, 22 Family consent laws, 10, 16-1 7 policies of, 7 defined, 121 concerning access to information Financial considerations by ethics committees, 89-90 See also Costs concerning criteria for use of life- advance directives and, 16n sustaining treatments, 66 disagreement over, 25 concerning refusal to honor of ethics committee functions, 77 treatment preferences, 60n, First Healthcare Corp., 16n 60-61 Friends concerning staff as ethics commit- See also Family tee members, 95 as surrogate decision makers, 2, 10-1 1 responsibilities of in disagreements about treatment, 24 for appointing a patient representa- participation in ethics committee tive, 87-88 proceedings, 84-86 for ethics education, 75, 78-79 for evaluating disagreements, 76- Government regulations 77 disagreements and, 22 for handling disagreements, 74-89 Greenwall Coordinating Council, 3 to unbefriended patients, 57-58 Greenwall Foundation, 3 roles of Grievance mechanisms, 7 1, 74, 74n in litigation, 107-14 in health maintenance organizations, in preventing disputes, 28-69 81 staff of in Minnesota disagreements among, 24, 45, 59, model of, 126 63, 65 Guardian diverse values and beliefs of, 47 appointment of, 57, 102 during litigation, 108-12 alternatives to, 57 education of for unbefriended patients, 57-58 about ethical issues, 78-79 defined, 121 about ethics committees, 75 Guardian ad litem, 1 15, 1 16 about litigation, 112 defined, 121 ethics committee functions and Guidehes for State Court Decision See Ethics committees/consult- Making in Life-Sustaining Medical ants Treatment Cases, 3 personal views of, 44 Index 149

Health care providers (continued) Jehovah's Witnesses staff of blood transfusions for, 60, 72 personnel handling disagreements Judicial involvement in disputes, 26, Of, 71-72, 74-75 101-18 team approach of, 58-59 educational value of, 102 types of, 5-6 principles of, 13 patient care dynamics and, 30-31 Judicial procedures Health care proxy, 16, 32-33 involving ethics committee records, See also Surrogate decision makers 9 1-92 defined, 122 location of, 116- 1 7 Health maintenance organizations publicity and open courts and, 117- internal complaint system in, 126- 18 27 time and expense of, 114- 16 Hearings Judicial review on-site, 116- 17 right to Home health care, 3 1, 5 8 persons authorized for, 125- defined, 122 26 Hospice defined, 122 Law pertaining to life-sustaining medical Imbalances in power treatment ethics committee proceedings and, legal counsel and, 1 13-14 94-98 Legal aspects In re Conroy, 129 of refusal to honor patient preferences, In re lobes, 129 60-61 In re Quinlun, In, 129 Legal counsel Incompetency clients represented by See also Competency during litigation, 1 11 - 12 defined, 122 role of v. decision-making capacity, 13-14, during litigation, 11 1 - 14 104-105 educational, 78, 112 Infants, handicapped in ethics committee proceedings, 99 parents as surrogate decision makers Life-sustaining medical treatment for, 35-36, 106 defined, 122 Information Litigation about ethics committee's perfor- ethics committee records and, 91-92 mance, 76-77 health care provider's role during, in discovery process, 115 107-14 needed by ethics committeeskonsult- legal counsel's role during, 11 1- 14 ants, 88-90 resolution of disputes during, 110- provided by health care providers to 11 participants in decision making, Livingwills, 10, 16, 33, 105 12, 43-44 See also Advance directives requested for trial, 1 16 defined, 122 Informed consent, 2 Long-term care, 30-31, 58 defined, 122 defined, 122 health care providers' role in, 12 patient decision making and, 13, 15 Maine Insurance plans, 68, 69 Uniform Health Care Decisions Act Intensive care units, 52, 62 in, 16 defined, 122 Malpractice, 109 150 Wesolvinag Disputes Over Life-Sustaining Beatment

Managed care plans, 6, 22 New Mexico cost issues and, 68 Uniform Health Care Decisions Act grievance committees of, 7 1 in, 16n pace of decision malung and, 41 New York patient transfers and, 53 disputes over DNR orders Maryland mediation of, 125-26 patient care advisory committees in, Nixon, Richard M., 9 127 Notice McKay v. Bergstedt defined, 123 pain management and, 64n of pending litigation Mediation, 99 individuals receiving, 1 15 defined, 123 Nurses, 71 of disputes over DNR orders, 125- reassignment of during litigation, 1 10 26 Nutrition and hydration, artificial, 13, Medical records 21 access of ethics committees to, 90 defined, 119 ethics committee documentation in, 91 Ombudsman, 71, 74 notes on patient’s decision-making defined, 123 capacity in, 128 Onassis, Jacqueline Kennedy, 9 patient care advisory committee Osgood v. Genesys Regional Medical recommendations in, f27 Center, In, 15n Medical-ethical standards, 1 13 Minnesota Pain and suffering grievance mechanism in management of, 61-64 model of, 126 Palliative care, 53, 62 internal complaint system in HMOs defined, 123 in, 126-27 v. euthanasia, 64, 64n Minors Parents categories of, 34 See also Surrogate decision makers decision-making capacity of, 15 as guardians of minor children, 34-36, emancipated 106 defined, 341-1, 121 ethics committee outcome and, 92 ethics committee outcome and, 92 participation of in ethics committee in decision-malung process, 12, 33- proceedings, 85-86 36 Pastoral staff mature, 34 in discussions with patient and defined, 122 families, 54, 71 nonmature, 34 Patient(s) defined, 123 age of participation of in ethics committee decision-making capacity and, 14- proceedings, 82, 85-86 15 patient representatives for See also Minors in ethics committee proceedings, 88 as focus of decision-malung process, treatment for 30-33 disagreement over, 25 chart of ethics committee documentation National Center for State Courts, 3 and, 91 Negotiation decision malung by, 13-15 defined, 123 defined, 123 New Jersey discussions with procedural guidelines for end-of-life See Discussions of medical treat- decisions in, 129 ment with patient and family Index 151

Patient(s1 (continued) communication of wth patient during during litigation litigation, 109-1 10 n health care provider’s relationship medical emergencies and with, 108-11 atter,dance-at/judicial procedures persons authorized to speak in - and, 117 behalf of, 112 role in determining surrogate decision transfer of, 1 10 makers environment of in Colorado, 128 management of, 50-5 1 Physician-assisted suicide, 7 hopes and expectations of, 42-43 v. palliative care, 64, 64n lifestyle of Privacy, 43-44, 84-85 I as indicator of treatment prefer- See also Confidentiality ences, 33 ethics committee access to informa- participation of in ethcs committee tion and, 88-90 proceedings, 8 1-85 judicial procedures and, 1 17- transfer of 18 disagreements over, 25 Prognosis during litigation, 110 defined, 123 handling of, 52-53 Psychological aspects in cases of refusal to honor patient in discussions with patient and requests, 61, 6ln family, 21, 52 i treatment preferences of See also Advance directives; Qdv. Vacco,

< Surrogate decision makers pain management and, 64n in pain management, 62-63 Quinlan, Karen Ann, 1, 9 informed consent and, 32 irresolvable disputes over, 105 Records primacy of, 1, 2, 9 See also Medical records validity of, 3 1-32 of complaints submitted to grievance unbefriended, 7 committees, 126 defined; 1In, 124 of ethics committees, 90-92 identification of treatment prefer- litigation or court proceedings and, ences of, 57 9 1-92 i surrogate decision makers for, 1.1 Regulation Patient advocates, 71, 74 defined, 123 Patient care advisory committees Residents’ committees, 7 1, 74 function of Resuscitation in Maryland, 127 defined, 123 Patient representatives, 7 1 Right to die case, 9 defined, 8711, 123 See also Quinlan, Karen Ann participation of in ethics committee Risk management, 71, 78- proceedings, 82, 87-88 79 Patient Self-DeterminationAct, 10n, 79 defined, 123 advance directives in, 129 Rodriguez v. pirio, In defined, 123 Rules of evidence, 115-16 notice of patient rights at time of defined, 124 admission and, 6On Rules of procedure Payments systems defined, 124 disagreements and, 22 Physicians Saikewicz, Joseph, 1 r See also Health care providers Satz v. Perlmutter, 14n attending Self-determination defined, 120 patient decision malung and, 13 n52 Resolving Disputes Over Libsustaining Tfeatment

Social workers Technology in discussions with patient and patient-centered focus and, 30 families, 54 Terminally ill Special interest groups defined, 124 during litigation, 112 Testimony State Justice Institute, 3 alternative methods of, 1 13 State laws Treatment, medical ethics committee functions and, alternatives to 99 staff disagreements about, 43, 45 in disputes over DNR orders futile, 7, 64-66 mediation of, 125-26 controversy over, 65 on designation of surrogate decision defined, 65 makers, 107 patient preferences for on guardianship appointments, 102 refusal of by health care provider, on incompetency determination, 104 6On, 60-61 State v. McAfee patient refusal of, 1-2 pain management and, 64n legal recognition of, 14, 14n Statute v. patient request for treatment, 14 defined, 124 settings of Substituted judgment standard, 18-19, patient care dynamics and, 30-31 25 withdrawal of v. withholding of, 13, defined, 124 21 7- Surrogate decision makers, 12, 15-16 authority of, 2 Uniform Health Care Decisions Act best interests standard and, 19n, 19- refusal to honor patient preferences 20 and, 6On conflicts of interest with, 25, 33, 106 surrogate designation and, 161-1, 32n defined, 124 U.S. Supreme Court, 9, 10 designation of, 16-17, 32n, 106-107 Utilization review, 68, 77 in Colorado, 128 ethics committee outcome and, 92 Values and beliefs for handicapped infants, 35-36, 106 disagreements over, 21, 26 in disputes over treatment decisions, diversity and, 46-47 105 ethics committee proceedings and, 96 persons serving as, 10-1 1 of health care providers, 44, 47 standards of decision malung by, 17- Video technology 20 in testimony in litigation, 1 13 state recognition of, 10-11 statutes authorizing, 10 Young, Brenda, 151-1 treatment decisions of, 107