The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition

Decisions about life-sustaining treatment are often ethically challenging for patients, surrogate decision-makers, and health care professionals. Providing safe, effective, and compassionate care near the end of life is a priority for health care organizations. In times of uncertainty, crisis, or reflection, and in efforts to improve health care for seriously ill patients, guidelines can help. This is the first updated, expanded edition of The Hastings Center's 1987 Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying, which shaped the ethical and legal framework for decision-making on treatment and end-of-life care in the United States. The new edition, the product of an authoritative consensus process, incorporates 25 years of research, innovation, and developments in law and policy. It summarizes the current framework for making good decisions about treatment and care and identifies educational and organizational goals for health care systems. It covers care planning, decision-making for adults and for children, care transitions, the determination of death, and the policies and processes that support good care at the bedside. It also addresses the psychological and social dimensions of care near the end of life, with attention to effective communication with patients and loved ones and among team members. This book is written for physicians, nurses, and other clinicians in hospitals, nursing homes, home care, and hospice. It is structured for ease of reference during difficult clinical situations and includes extensive practical recommendations supported by print and online resources. This book is also essential reading for clinical ethicists, ethics committee members, health lawyers, and medical and nursing directors. As the U.S. confronts the challenges of health care reform, an aging population, increasing technological capacity to extend life, and serious cost implications, The Hastings Center Guidelines are invaluable to educators, scholars, and policymakers.

Table of Contents:
Preface to the Second Edition Contributors How These Guidelines Are Organized Introduction The Function and Sources of These Ethics Guidelines Legal and Ethical Consensus Informing These Guidelines: Rights, Protections, and Key Philosophical Distinctions Part One: Framework and Context Section 1: Ethics Goals for Good Care When Patients Face Decisions about Life-Sustaining Treatment or Approach the End of Life Section 2: Ethics Education Competencies for Health Care Professionals Caring for Patients Facing Decisions about Life-Sustaining Treatment and Patients Approaching the End of Life Section 3: Organizational Systems Supporting Good Care and Ethical Practice Section 4: Social, Economic, and Legal Contexts A. Social Context B. Economic Context C. State and Federal Context Part Two: Guidelines on Care Planning and Decision-Making Section 1: Guidelines for Advance Care Planning and Advance Directives: Using Patient Preferences to Establish Goals of Care and Develop the Care Plan Section 2: Guidelines for the Decision-Making Process A. Evaluating the Patient B. Determining Decision-Making Capacity C. Identifying the Key Decision-Maker D. Surrogate Decision-Making E. Making the Decision at Hand F. Documenting the Decision G. Implementing the Decision H. Changing Treatment Decisions I. Conflict and Challenges Related to Treatment Decision-Making Section 3: Guidelines Concerning Neonates, Infants, Children, and Adolescents A. General Guidelines for Pediatric Decision-Making Concerning the Use of Life-Sustaining Treatments B. Guidelines for Decision-Making and Care Involving Nonviable Neonates and Neonates at the Threshold of Viability C. Guidelines for Decision-Making about Life-Sustaining Treatment for Viable Neonates D. Guidelines for Decision-Making about Life-Sustaining Treatment for Young Children E. Guidelines for Decision-Making with Older Children F. Guidelines for Decision-Making with Adolescents G. Guidelines for Decision-Making by Mature Minors and Emancipated Minors Section 4: Guidelines for Care Transitions A. General Guidelines for Hand-Offs between Professionals and Transfers across Care Settings B. Guidelines on Care Transitions for Nursing Home Residents C. Guidelines on Portable Medical Orders D. Guidelines on Discharge Planning and Collaboration with Nursing Homes, Home Care, Hospice, and Outpatient Care E. Guidelines on Care Transitions for Patients Who Will Die in the Hospital Section 5: Guidelines for the Determination of Death A. Procedural Guidelines for Making a Determination of Death and for Making a Declaration of Death B. The Determination of Death: Continuing Ethical Debates Section 6: Guidelines for Institutional Policy A. Guidelines on Ethics Services in Institutions Providing Care for Patients Facing Decisions about Life-Sustaining Treatment or Approaching the End of Life B. Guidelines on Palliative Care Services C. Guidelines Supporting Advance Care Planning D. Guidelines Supporting Portable Medical Orders E. Guidelines Supporting Care Transitions F. Guidelines on the Role of Institutional Legal Counsel and Risk Management in Supporting Good Care G. Guidelines on Conflict Resolution Part Three: Communication Supporting Decision-Making and Care Section 1: Communication with Patients, Surrogates, and Loved Ones A. Conducting a Family Conference When a Patient's Condition Is Deteriorating B. Supporting the Decision-Maker When Loved Ones Disagree C. Discussing Values Concerning Nutrition and Hydration D. Using Electronic and Telephone Communications with Seriously Ill Patients or with Surrogates and Loved Ones Section 2: Communication and Collaboration with Patients with Disabilities A. Life-Sustaining Treatments and Accommodation of Stable or Progressive Disabilities B. Communication When a Patient's Disability Affects Speech C. Communication When a Patient's Disability Affects Cognition D. Communication and Collaboration with Recently Disabled Patients Concerning Life-Sustaining Treatments Section 3: Psychological Dimensions of Decision-Making about Life-Sustaining Treatment and Care Near the End of Life A. Coping as a Factor in Treatment Decision-Making B. Hope as a Factor in Treatment Decision-Making C. Ambivalence, Denial, and Grief as Factors in Treatment Decision-Making D. Existential Suffering as a Factor in Treatment Decision-Making E. Spirituality and Religion as Factors in Treatment Decision-Making F. Religious Objections during Treatment Decision-Making G. Moral Distress as a Factor in Treatment Decision-Making H. Integrating Bereavement Care for Loved Ones and Professionals into Care Near the End of Life Section 4: Decision-Making Concerning Specific Treatments and Technologies A. Forgoing Life-Sustaining Treatments: Ethical and Practical Considerations for Clinicians B. Brain Injuries and Neurological States C. Mechanical Ventilation D. Cardiopulmonary Resuscitation and Cardiac Treatments E. Dialysis F. Nutrition and Hydration G. Chemotherapy and Other Cancer Treatments H. Routine Medications, Antibiotics, and Invasive Procedures I. Blood Transfusion and Blood Products J. Palliative Sedation Section 5: Institutional Discussion Guide on Resource Allocation and the Cost of Care A. Developing a Practice of Discussing Resource Allocation and the Cost of Care: Six Strategies B. Discussing Uncompensated Care for Patients without Insurance Glossary Cited Legal Authorities Selected Bibliography Index

About the Author :
Nancy Berlinger is a Research Scholar at The Hastings Center and teaches ethics at the Yale University School of Nursing. She directed the Hastings Center project that produced the revised and expanded second edition of the Guidelines. Bruce Jennings is Director of Bioethics at the Center for Humans and Nature and teaches ethics at the Yale University School of Medicine. He is an elected Fellow of The Hastings Center and was a co-author of the first edition of the Guidelines in 1987. Susan M. Wolf is McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota, and a Faculty Member in the University's Center for Bioethics. She is an elected Member of the National Academy of Science's Institute of Medicine, elected Fellow of the AAAS, and elected Fellow of The Hastings Center. She directed the Hastings Center project that produced the first edition of the Guidelines in 1987, and was principal author of that work.

Review :
"This second edition of the classic Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life is a gem. The coverage of issues related to the care of children is a welcome addition, and now makes the document a truly comprehensive textbook for ethical, legal, institutional, and psychosocial aspects of end-of-life care. The format is particularly attractive, allowing the reader to absorb concise "bullet points" on each topic with easy access to more detailed discussion in the text. This excellent organizational format, plus the searchable ebook, makes these Guidelines a uniquely practical resource for all who care for patients near the end-of-life." -- Robert Truog, Professor of Medical Ethics, Anesthesiology, & Pediatrics and Director of Clinical Ethics, Harvard Medical School; Executive Director, Institute for Professionalism & Ethical Practice Senior Associate in Critical Care Medicine, Children's Hospital Boston "The book is so much more than just guidelines. It is the sourcebook for how the ethics of life-sustaining treatment and care at the end of life should be taught, institutionalized and translated into clinical teaching and practice. Medical students and residents will learn how to think about and approach the care of patients who are dying or who refuse life -sustaining therapies. Healthcare institutions will match their procedures and processes in ethical consultations to the goals and competencies outlined in these guidelines. Healthcare leaders and policy makers will advocate for the full integration of these guidelines into healthcare policy and procedures. By taking a comprehensive view of what healthcare professionals and policy makers need to know to set the standards for "the ethical treatment decision-making and delivery of safe, effective and compassionate care near the end of life, " the three authors, all with extensive experience in ethics and legal policy, have created an extremely relevant, readable and practical book that will guide clinicians' challenging work in navigating the difficulties of shared decision-making for those with life limiting illnesses and the dying."- Kathleen M. Foley, The Society of Memorial Sloan-Kettering Cancer Center Chair "I am delighted to see the broader scope and fuller discussion in the new edition, with the same spirit of courage and caution that has made this work important over the years. Developing organizational ethics as important and manageable is an especially important contribution in the new edition." -- Joanne Lynn, Director, Altarum Institute for Elder Care and Advanced Illness "An invaluable resource. The revised guidelines offer key stakeholders a robust road map for providing ethically grounded end of life care across the lifespan. The expanded version highlights important contemporary ethical issues at the end of life: Pediatrics, transitions of goals, communication, conflict resolution, professional integrity and costs and suggests evidence based solutions to some of the most vexing ethical questions faced by individuals , organizations and society." -- Cynda Hylton Rushton, Anne and George Bunting Professor of Clinical Ethics, Professor of Nursing and Pediatrics And Program Director, Harriet Lane Compassionate Care, Johns Hopkins University Berman Institute of Bioethics "Like its 1987 ground-breaking predecessor, this new set of Hastings Center Guidelines will be a major and influential reference work for health care organizations, professionals, ethics committee members, and administrators as they aim to standardize and improve clinical practices, educational efforts, and policies and procedures related to end-of-life decision-making. The Guidelines are a superb summary, under one cover, of consensus points related to end-of-life care. Sections and subsections of the Guidelines can be read as "stand-alone," and therefore the work can be used as a kind of reference book according to immediate questions and needs. The writing style is very accessible for health care professionals and administrators, and avoids overly clinical jargon for an educated lay readership." -- Martin Smith, Director of Clinical Ethics, Department of Bioethics, Cleveland Clinic "While the first edition focused on articulating, arguably for the first time, the rights of patients and the corresponding responsibility of caregivers, the second edition works to contextualize these rights and duties in the lived experience of patients, families, and the healthcare team. This edition takes the original framework and builds upon it by addressing end-of-life issues not only in regard to a patient's condition, but also in light of their lived experience. In addition to expanding on and updating the guidelines for making ethical decisions in the end-of -life context, the second edition provides a framework for guidance on pediatric decision-making that was not addressed in the first edition. The new material on pediatrics includes important clarifications and distinctions between adult, adolescent, and infant end-of-life care." --Amanda Hine, MA(Saint Louis University), Doody's "Intended primarily for nurses, physicians, and chaplains as well as other professionals working with families facing end-of-life decisions, the book is filled with both ethical insight and practical wisdom. It will help practitioners think about what questions to ask and what processes to employ when doing clinical work." -A.W. Klink, Duke University, CHOICE