The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life

Revised and Expanded Second Edition

Second Edition

Nancy Berlinger, Bruce Jennings, and Susan M. Wolf

Clarifies the current ethical and legal framework for treatment decision-making and end-of-life care in the U.S.
Structured for ease of reference
Provides comprehensive guidelines and commentary on paediatric and adult decision-making, with step-by-step processes and clear explanations
Offers recommendations and models for effective communication in care planning, decision-making, care transitions, and conflict management, as well as concerning specific interventions
Promotes clinician education and systemic improvements by describing the goals of good care for seriously ill patients and the skills, knowledge, and systems needed to support good care
Describes the social context of decision-making, helping professionals to understand how choices may be shaped by family, religion and culture, care settings, law, and financing
Includes unique perspectives from disability communities to promote better understanding of the experience of disability as a factor in treatment decision-making
Includes a discussion guide on resource allocation and the cost of care
Includes selected bibliography of more than 500 print and online resources

The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life

Revised and Expanded Second Edition

Second Edition

Nancy Berlinger, Bruce Jennings, and Susan M. Wolf

Description

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.

The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life

Revised and Expanded Second Edition

Second Edition

Nancy Berlinger, Bruce Jennings, and Susan M. Wolf

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

The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life

Revised and Expanded Second Edition

Second Edition

Nancy Berlinger, Bruce Jennings, and Susan M. Wolf

Author Information

Nancy Berlinger, Hastings Center, Yale University School of Nursing, USA, Bruce Jennings, Center for Humans and Nature, Yale University School of Public Health, USA, and Susan M. Wolf, University of Minnesota, USA

Nancy Berlinger is a Research Scholar at The Hastings Center and teaches ethics in master's and doctoral programs at the Yale University School of Nursing. She directed the Hastings Center project that produced the revised edition of the Guidelines and is also the author of After Harm: Medical Error and the Ethics of Forgiveness (Johns Hopkins University Press, 2005). Her research and publications include topics in end-of-life care, palliative care, chronic illness, patient safety, and health policy. She serves on the bioethics committee at Montefiore Medical Center, Bronx, New York and is involved in clinician education in the New York area, nationally, and internationally.

Bruce Jennings is Director of Bioethics at the Center for Humans and Nature and teaches ethics at the Yale School of Medicine. He has published widely on ethical issues in end-of-life treatment decision making and palliative care. He has served on the Board of Directors of the National Hospice and Palliative Care Organization (NHPCO) and on numerous hospital ethics committees in the New York metropolitan area.

Susan M. Wolf is McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota, as well as Founding Chair of the University's Consortium on Law and Values in Health, Environment & the Life Sciences, and a Faculty Member in the 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.

The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life

Revised and Expanded Second Edition

Second Edition

Nancy Berlinger, Bruce Jennings, and Susan M. Wolf

Reviews and Awards

"Reports and publications from the Hastings Center have been influential in shaping and defining our professional attitudes to ethics of clinical care, particularly in regard to euthanasia and physician-assisted suicide (PAS) and other matters related to end-of-life care. This second edition of their Guidelines is very welcome and provides a clear and reasoned approach to the different clinical scenarios... It's a pleasure to read as the material is logically sequenced and each statement or recommendation is justified-you feel each bit has been thought through and care taken to write it clearly. If you have an interest in the ethical underpinnings of what we do, this book is for you. If you teach about ethics and clinical practice, or are responsible for it at your institution, this is required reading." - Roger Woodruff for IAHPC News, July 2013

"This groundbreaking expansion of the Guidelines incorporates 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." - Anticancer Research, August 2013

The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life

Revised and Expanded Second Edition

Second Edition

Nancy Berlinger, Bruce Jennings, and Susan M. Wolf

From Our Blog

Getting from 'is' to 'ought' near the end of life

By Nancy Berlinger There is a saying in ethics: you can't get an 'ought' from an 'is.' Descriptions of the world as it is do not reveal truths about the world as it ought to be. Even when descriptions of real-world conditions suggest that something is seriously wrong — that our actions are causing unintended and avoidable harms to ourselves, to others, to our common environment — reaching agreement on how we ought to change our thinking and our behavior, and then putting these changes into practice, is hard.

Posted on May 7, 2013

Read the blog post