A Palliative Ethic of Care. Clinical Wisdom at Life's End

Description

This volume explains how to develop a set of patient and physician goals for improving quality of life, resolving end of life issues, and treating dying patients. The author, Dr. Joseph Fins, pragmatically blends ethical theory and clinical practice, presenting readers with theoretical and historical considerations about end of life care and offering practical wisdom about the care of dying patients and their families. a palliative Ethic of Care employs the ground-breaking Goals of Care Assessment Tool (GCAT) as a framework of knowledge that links practical considerations about patient care with more theoretical concerns to provide deeper insights into why end-of-life care is so challenging and to help foster necessary reform in how people die.

Systems of care are impersonal and anonymous. Ultimately, it is the task of the individual practitioner to initiate and sustain the provision of care. A Palliative Ethic of Care: Clinical Wisdom at Life’s End is an invaluable resource for helping achieve this objective.

This book is an ideal resource for:

• Medical and nursing students and residents
• Undergraduate and graduate students in medical ethics, medical sociology/anthropology, and clinical psychology
• Practicing doctors, nurses, and other medical professionals who care for patients near the end of life
• Elder law and health law attorneys

Some possible areas of study include:

• Introduction to Medicine Communication Skills
• Medical Humanities
• Clinical Ethics
• Palliative Care Clerkships
• Clinical Clerkships in Medicine, Surgery, Pediatrics, Ob/GYN and consultation-liaison psychiatry services
  

KEY FEATURES

· Blends ethical theory and clinical practice.
· Explains how to develop a set of patient/physician goals for improving quality of life, resolving end-of-life issues, and treating dying patients.
· Presents readers with theoretical and historical considerations about end of life care and offers practical wisdom about the care of dying patients and their families.
· Employs the ground-breaking Goals of Care Assessment Tool (GCAT) as a framework of knowledge that links practical considerations about patient care with more theoretical concerns.
· Provides deep insight into why end-of-life care is so challenging and helps foster necessary reform in how people die.

TABLE OF CONTENTS

Foreword
Preface
Acknowledgements
Permissions

PartI: Death and Dying in Context

Ch 1: Medical Students, Residents and the Dying Patient

• The Challenge of Caring for the Dying
• Goal-Setting Near the End of Life
• How this Book is Organized
• Closing Words

Ch 2: The Rise of the Bioethics and Palliative Care Movements

• European Origins of Hospice and Palliative Care
• The American Context
• The Rise of Self-Determination
• Towards an Ethic of Patients' Rights

Ch 3: Death, Dying, and the Law

• The Law and the Rise of Patient Self-Determination
• Quinlan and the Right to Die
• Quinland and the Institutionalization of Hospital Ethics Committees
• Cruzan and the Patient Self-Determination Act
• Advance Care Planning in Theory and Practice
• From Self-Determination to Physician-Assisted Suicide
• Physician-Assisted Suicide: Laying Out the Arguments
• Physician-Assisted Suicide in the Courts
• A Consensus on Palliative Care
• Back to the Future: The Schiavo Case
• Epilogue

Ch 4: End-of-Life Care in the Hospital

• Death in the Modern Hospital
• Medical Rescue and Intensive Care
• Fostering Communication
• Communication, Palliation, and the Road Not Taken
• Milestones at the End-of-Life
• Ambivalence and Medical Futility
• Futility: A Definitional Primer
• The Evolution of Futility Disputes
• Goal Convergence, Palliative Care and the Avoidance of Futility Disputes

Part II: Goal-Setting: A Strategy for Effective Palliative Care

Ch 5: Goals of Care: Triggering the Process

• Goal-Setting as Differential Diagnosis
• Triggering the Process
• Concluding Comments

Ch 6: Goals of Care: When Death is Near

• Introduction
• Clinical Perceptions
• Patient Perceptions
• When a Patient Wants to Die
• Surrogate Perceptions
• Decision-Making Capacity
• Helping Surrogates Decide

Ch 7: Goals of Care: End-of-Life Decisions

• Introduction
• Do Not Resuscitate Orders
• Advance Care Planning
• Working with the Proxy
• Withdrawals of Care
• Hospice or Palliative Care Referral
• Hospice Care

Ch 8: Goals of Care: Medical Developments

• Introduction
• A Life-Threatening Illness
• Prognosis
• Acute Decompensation and the Use of Life-Sustaining Therapies
• Consideration of ICU Transfer
• Symptoms at the End of Life
• The Ethics of Opioid Use

Ch 9: Goals of Care: Gathering Information

• Introduction
• Sources of Information
• Demographics and Local Culture
• The Power of Diagnosis
• Forced Prognostication and Patient Expectations
• Assessment of Capacity and the Refusal of Life-Sustaining Therapies
• Knowledge of Diagnosis and Prognosis
• Constructing a Shared World Meaning with the Patient and Family
• Breaking Bad News
• The Therapeutic Exception
• DNR in the OR
• The Elusive Advance Directive
• Family Dynamics
• The Symbionic Family
• Cultural Issues: Religious Objections to Brain Death
• Public Perspectives on Pain and Meaning
• Biological Symptom Assessment

Ch 10: Formulating the Goals of Care

• Introduction
• Defining Goals
• Hospital Resources
• Psychiatry Consultation
• Pastoral Care/Chaplaincy
• Pain Service/Palliative Care Consult/Referral to Palliative Care Unit
• Hospice Referral
• Social Work
• Ethics Committees
• The Centrality of Communication and Consensus
• Working with Nurses
• Involving the Patient and Family
• One Good Death

Appendix: The Goals of Care Assessment Tool (GCAT)

Index

ABOUT THE AUTHOR

Joseph J. Fins, MD - Weill Medical College of Cornell University/New York Presbyterian Hospital-Weill Cornell Medical Center

Joseph J. Fins, MD, is Chief of the Division of Medical Ethics at Weill Medical College of Cornell University where he serves as Professor of Medicine, Professor of Public Health, and Professor of Medicine in Psychiatry. In addition, Dr. Fins is Director of Medical Ethics at New York-Presbyterian Weill Cornell Center, Associate for Medicine at The Hastings Center, and a member of the Adjunct Faculty of Rockefeller University. He has been a Visiting Professor in Medical Ethics at The Complutense University in Madrid and is a recipient of a Soros Open Society Institute Project on Death in America Faculty Scholars Award and a Woodrow Wilson National Fellowship Foundation Visiting Fellowship. In July 2000, Dr. Fins was appointed by President Clinton to the White House Commission on Complementary and Alternative Medicine Policy. A diplomat of the American Board of Internal Medicine, Dr. Fins is a graduate of Wesleyan University (B.A. with Departmental Honors, The College of Letters, 1982) and Cornell University Medical College (M.D., 1986). He completed his residency in Internal Medicine and Fellowship in General Internal Medicine at The New York Hospital-Cornell Medical Center. Dr. Fins resides in Manhattan with his wife and son.

TESTIMONIALS

"The intention of this book is simple – to improve the care of dying patients and their families. The author carefully weaves theoretical considerations with a clinical pragmatism to help the novice physician reinforce the goals of care for the terminally ill." --Craig D. Blinderman, MD, MA, Department of Pain Medicine and Palliative Care, Beth Israel Medical Center, New York, NY, Reviewed in the Journal of Pain and Symptom Management
Vol.31/No.5 May 2006

"A Palliative Ethic of Care is well worth reading, even by veteran clinicians."––Mellar P. Davis, MD, Harry R. Horvitz Center for Palliative Medicine, As reviewed in the New England Journal of Medicine, 2006, 354:15

"The book focuses on the challenges and barriers facing the growing field of palliative care. It serves as a comprehensive primer on the ethics of end-of-life care starting with the ethical and legal principles essential to end-of-life decision making and ending with a practical methodological approach and a pathway to clinical care."––The British Library
May 2006

"This book, targeting principally physicians-in-training, provides practical advice for melding theory and practice in the real-life world of the acute care hospital. This book is written in a straightforward, informal style, often addressing the reader in the second person."––James Hallenbeck, MD, Stanford University School of Medicine, The Oncologist, May 2006

"In A Palliative Ethic of Care, Dr. Fins, a consummate educator, extends himself as a mentor. With uncanny discernment, he articulates nagging questions and doubts that arise in young clinicians' minds and offers responses that are clear, insightful and highly practical...destined to become a standard in medical education."--Ira Byock, MD, Director of Palliative Medicine, Dartmouth Medical School, author of Dying Well

“Dr. Fins combines a physician's practicality with philosophical pragmatism to lead young doctors through the complex process of caring for dying patients. As William James, his mentor in pragmatism, would say, 'it is a worthwhile leading' for it arrives at truths that can make a difference in the experience of doctors and patients alike.”--Albert R. Jonsen, Ph.D., Emeritus Professor, Ethics in Medicine, University of Washington; Co-Director, Program in Medicine and Human Values, California Pacific Medical Center

“The book models how to doctor the dying... By learning how to apply abstract ethical and legal principles to every day medical decision making, this uniquely relevant and readable text teaches students how to formulate a care plan that respects a patient's autonomy, dignity and personhood...There is both a brilliance and a simplicity in the book's writing style. It is conversational and you feel as if you are on rounds with a master teacher.”--From the foreword by Kathleen M. Foley, MD, Attending Neurologist, Pain & Palliative Care Service Memorial Sloan-Kettering Cancer Center

"This is a comprehensive, yet concise, compelling review of the concept, the context, and the content of quality end-of-life care. The emphasis on the need for individual medical decisions to be driven and directed by the goal of care is the book's finest hour and most important contribution. Hopefully it will make the pronouncement, 'There's nothing more we can do,' obsolete. Dr. Fins encourages and empowers the professional with the idea that competent, compassionate, goal-centered care is every bit as rewarding as cure."--David B. Cotton, MA; MDiv., Jersey Shore University Medical Center, Doody's Enterprises, Inc.

"Recommended as a primary text in courses that address care for the terminally ill. Further recommended to Health Science libraries as a general reference text exploring medical, sociological and philosophical issues of patient care."--John Aiello, The Electric Review

"Fins is a highly gifted and insightful individual. As a physician and bioethicist, he crafts a vision for good quality care at the end of life. In crafting a vision, he leads with reason and passion. As a teacher and mentor, he articulates, clarifies, and tackles philosophical, ethical, and legal principles with brilliance and candor. As a narrator of stories, he speaks with feeling and confers meaning on an otherwise unexamined patient's world. Indeed, my colleague's sentiments are very telling, 'I wish I had this book when I was in medical school.'"--Cesar G. Espineda, PH,D, Journal of Religion and Health