Now available

Hastings Center Guidelines
Revised and Expanded Second Edition
by Nancy Berlinger, Bruce Jennings, and Susan M. Wolf
Oxford University Press, 2013 (print and e-book)

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Click here to read our article in PEDIATRICS

This major new work updates and significantly expands The Hastings Center’s 1987 Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying. Like its predecessor, this second edition will shape the ethical and legal framework for decision-making on treatment and end-of-life care in the United States.

This groundbreaking expansion of the Guidelines incorporates 26 years of research and innovation in clinical care, law, and policy. It is written for physicians, nurses, and other health care professionals and is structured for easy reference in difficult clinical situations. It supports the work of clinical ethicists, ethics committee members, health lawyers, clinical educators, scholars, and policymakers. It includes extensive practical recommendations.

Health care reform places a new set of challenges on decision-making and care near the end of life. The Hastings Center Guidelines are an essential resource.


Table of Contents

Browse the TOC
Introduction
The Function and Sources of These Ethics Guidelines
Legal and Ethical Consensus Informing These Guidelines: Rights, Protections, and Key Philosophical Distinctions

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 Professional Caring for Patients Facing Decisions about Life-Sustaining Treatment or Approaching the End of Life

Section 3: Organizational Systems Supporting Good Care and Ethical Practice

Section 4: Social, Economic, and Legal Contexts

  1. Social Context
  2. Economic Context
  3. State and Federal Context
Section 1: Guidelines for Advance Care Planning and Advance Directives: Using Patient Preference to Establish Goals of Care and Develop the Care Plan
Section 2: Guidelines for the Decision-Making Process

  1. Evaluating the Patient
  2. Determining Decision-Making Capacity
  3. Identifying the Key Decision-Maker
  4. Surrogate Decision-Making
  5. Making the Decision at Hand
  6. Documenting the Decision
  7. Implementing the Decision
  8. Changing Treatment Decisions
  9. Conflicts and Challenges Related to Treatment Decision-Making

Section 3: Guidelines Concerning Neonates, Infants, Children, and Adolescents

  1. General Guidelines for Pediatric Decision-Making Concerning the Use of Life-Sustaining Treatments
  2. Guidelines for Decision-Making and Care Involving Nonviable Neonates and Neonates at the Threshold of Viability
  3. Guidelines for Decision-Making about Life-Sustaining Treatment for Viable Neonates
  4. Guidelines for Decision-Making about Life-Sustaining Treatment for Young Children
  5. Guidelines for Decision-Making with Older Children
  6. Guidelines for Decision-Making with Adolescents
  7. Guidelines for Decision-Making by Mature Minors and Emancipated Minors

Section 4: Guidelines for Care Transitions

  1. General Guidelines for Hand-Offs between Professionals and Transfers Across Care Settings
  2. Guidelines on Care Transitions for Nursing Home Residents
  3. Guidelines on Portable Medical Orders
  4. Guidelines on Discharge Planning and Collaboration with Nursing Homes, Home Care, Hospice, and Outpatient Care
  5. Guidelines on Care Transitions for Patients Who Will Die in the Hospital

Section 5: Guidelines for the Determination of Death

  1. Procedural Guidelines for Making a Determination of Death and for Making a Declaration of Death
  2. The Determination of Death: Continuing Ethical Debates

Section 6: Guidelines for Institutional Policy

  1. Guidelines on Ethics Services in Institutions Providing Care for Patients Facing Decisions about Life-Sustaining Treatment or Approaching the End of Life
  2. Guidelines on Palliative Care Services
  3. Guidelines Supporting Advance Care Planning
  4. Guidelines Supporting Portable Medical Orders
  5. Guidelines Supporting Care Transitions
  6. Guidelines on the Role of Institutional Legal Counsel and Risk Management in Supporting Good Care
  7. Guidelines on Conflict Resolution

Section 1: Communication with Patients, Surrogates, and Loved Ones

  1. Conducting a Family Conference When a Patient’s Condition Is Deteriorating
  2. Supporting the Decision-Maker When Loved Ones Disagree
  3. Discussing Values Concerning Nutrition and Hydration
  4. Using Electronic and Telephone Communications with Seriously Ill Patients or with Surrogates and Loved Ones

Section 2: Communication and Collaboration with Patient with Disabilities

  1. Life-Sustaining Treatments and Accommodation of Stable or Progressive Disabilities
  2. Communication When a Patient’s Disability Affects Speech
  3. Communication When a Patient’s Disability Affects Cognition
  4. 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

  1. Coping as a Factor in Treatment Decision-Making
  2. Hope as a Factor in Treatment Decision-Making
  3. Ambivalence, Denial, and Grief as Factors in Treatment Decision-Making
  4. Existential Suffering as a Factor in Treatment Decision-Making
  5. Spirituality and Religion as Factors in Treatment Decision-Making
  6. Religious Objections During Treatment Decision-Making
  7. Moral Distress as a Factor in Treatment Decision-Making
  8. Integrating Bereavement Care for Loved Ones and Professionals into Care Near the End of Life

Section 4: Decision-Making Concerning Specific Treatments and Technologies

  1. Forgoing Life-Sustaining Treatments: Ethical and Practical Considerations for Clinicians
  2. Brain Injuries and Neurological States
  3. Mechanical Ventilation
  4. Cardiopulmonary Resuscitation and Cardiac Treatments
  5. Dialysis
  6. Nutrition and Hydration
  7. Chemotherapy and Other Cancer Treatments
  8. Routine Medications, Antibiotics, and Invasive Procedures
  9. Blood Transfusion and Blood Products
  10. Palliative Sedation

Section 5: Institutional Discussion Guide on Resource Allocation and the Cost of Care

  1. Developing a Practice of Discussing Resource Allocation and the Cost of Care: Six Strategies
  2. Discussing Uncompensated Care for Patients Without Insurance
Notes
Glossary
Cited Legal Authorities
Selected Bibliography
Index


November 2013 PEDIATRICS Article

Advance Praise

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 D. Truog, MD

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, MD

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, MD, MA, MS

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, PhD, RN

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.”

—Marty Smith, STD

Director of Clinical Ethics, Department of Bioethics, Cleveland Clinic

About the Authors

berlinger
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.
jennings
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.
wolf
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.

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