Clinical and Ethical Dilemmas in Palliative and End-of-Life Care

Part of the "What Do I Do Now: Palliative Care" series, Clinical and Ethical Dilemmas in Palliative and End-of-Life Care bridges the gap between the clear, logical, and harmonious clinical world of textbooks and the chaotic, turbulent, resource-constrained, and often unpredictable world of everyday practice. Each chapter begins with a case and is followed by a diagnosis, explanation of next steps, and rationale for decision-making by experts in the field, mimicking the kind of "curbside consult" that occurs between an experienced clinician and someone new to the field.

Tackling dilemmas related to patients, families, healthcare professionals, and the healthcare system, this book comprehensively helps readers learn to apply practical knowledge in challenging circumstances-and often with incomplete information-to achieve clinical competency. The volume is also a self-assessment tool that tests the reader's ability to answer the question, "What do I do now?"

Ann Berger, MD , MSN completed her undergraduate degree with a B.S. in nursing from New York University, then received her MSN in Oncology Nursing from University of Pennsylvania. After working as an Oncology Clinical Nurse Specialist for several years, Dr. Berger completed her medical training at Medical College of Ohio in Toledo, Ohio. Following medical school, Dr. Berger completed an internship and residency at Hartford Hospital in Connecticut and a Fellowship in medical oncology and pain/palliative care at Yale University in Connecticut.

Dr. Berger has had over 30 years of experience in pain and palliative care. Most recently, she was chief of pain and palliative care at National Institutes of Health Clinical Center where she held patient care, education, administrative, and research responsibilities. Dr. Berger has also been cochair of the National Institutes of Health Clinical Center wellness initiative for health care professionals and support staff and was an intramural advisor for several scientific interest groups.

Dr. Berger has lectured nationally and internationally. She researched the development of ways to measure psychosocial spiritual healing, as well as the use of integrative modalities for wellness for health care professionals and others, such as teachers. She has also published extensively in the field of pain, palliative care, and wellness for health care providers. Currently, Dr. Berger is a consultant in pain, palliative care, and well being.

Daniel B. Carr, MD, FABPM is Professor Emeritus of Public Health and Community Medicine at Tufts Medical Center, Boston, and was Saltonstall Professor of Pain Research in the Departments of Anesthesia and Medicine. He is known internationally for his contributions to pain research, evidence-based pain medicine, and to the social and political aspects of pain relief.

Dr. Carr co-chaired and drafted major portions of the Agency for Health Care Policy and Research Clinical Practice Guidelines on Acute and Cancer Pain Management. He was the principal technical consultant for the Agency for Healthcare Research and Quality evidence reports on cancer pain and symptom control; had leadership roles in the formation of comprehensive multidisciplinary pain treatment centers at the Massachusetts General Hospital, Tufts-New England Medical Center, and Caritas-St. Elizabeth's Medical Center; and co-developed a novel outcomes instrument ("TOPS") for patients with chronic pain.

In addition, Dr. Carr was the founding editor of the International Association for the Study of Pain's publication Pain: Clinical Updates, has been lead editor for pain trials in the Cochrane collaborative review group on Pain, Palliative and Supportive Care, and serves on the editorial boards of several pain-related journals.

Preface
Foreword
Contributors List

Part I: Dilemmas Related to Patients
Chapter 3: A Choice of Comfort Feeding
Wesley Boyette & M. Jennifer Cheng

Chapter 4: Patients Seeking Alternative Treatments for Cancer Pain
Steven Mach & Salahadin Abdi

Chapter 6: Delivering Difficult News as a Covering Provider
Scott Ian Borison

Chapter 8: To Pray or Not to Pray: Is that the Question?
Marta Illueca

Chapter 9: My Patient with Substance Use Disorder is in Acute Sickle Cell Pain Crisis
Baraa O. Tayeb & Antje M. Barreveld

Chapter 10: My Dying Patient Receiving Opioids Has a Respiratory Rate of 6
Baraa O. Tayeb & Antje M. Barreveld

Chapter 11: Video Gaming and Virtual Reality in Pediatrics
Elizabeth Pasternak & Pamela Ressler

Chapter 12: Native American Spirituality and Healing
Marta Illueca

Chapter 27: Dying Alone
Sharon Kim

Part II: Dilemmas Related to Families
Chapter 1: Navigating Familial Conflict Regarding Information Sharing
Nafiisah B.M.H. Rajabalee & Scott Ian Borison

Chapter 5: Dis/Continuing Transfusions in a 2 Year Old Dying of Leukemia
Elizabeth Pasternak & Pamela Ressler

Chapter 13: Managing Family Conflict
Betty R. Ferrell

Chapter 16: Dilemmas Related to Families
Anna Barreiro Albán & Beth B. Hogans

Chapter 20: Complicated Grief
Zhu Wang & Salahadin Abdi

Part III: Dilemmas Related to Healthcare Professionals
Chapter 23: Moral Distress: My Patient is Suffering and "We Can't Keep Torturing Them"
Anthony Eidelman & Regina M. Fink

Chapter 24: Work-Nonwork Life Fit: Tensions for Healthcare Clinicians
Emily P. Guinee, Angela K.M. Lipshutz, M. Jennifer Cheng, & Deborah J. Snyder

Chapter 25: Burnout and Resilience
Jennifer Winegarden & Ylisabyth Bradshaw

Chapter 26: Planning and Facing Retirement
Daniel B. Carr & Stephen Gullo

Part IV: Dilemmas Related to the Healthcare System
Chapter 14: Balancing Opioid Benefit and Risk for Subacute or Chronic Noncancer Pain
Scott A. Strassels & Daniel B. Carr

Chapter 19: The Emerging Role of Independent Patient Advocates
Shiella Dowlatshahi

Chapter 21: Managing Outpatient Workplace Violence
Pragya B. Gupta & Daniel B. Carr

Chapter 22: Maladaptive Team Dynamics
Moe Norton-Westbrook, Sylvia Christie, & Constance Dahlin

Chapter 28: Allocation of Scarce Resources
Justin Price

Chapter 29: Introducing Novel Treatments: Navigating Institutional Policies
Jennifer Winegarden

Chapter 34: Racial Inequalities in Healthcare
Carmen Renee Green

V: Dilemmas Related to Ethical Issues
Chapter 2: Hydration and Artificial Nutrition at the End of Life
Tamara Vesel & Carol Pilgrim

Chapter 7: Physician Assisted Death (PAD)
Sudha Chandrasekhar

Chapter 15: Decision-Making Around Dialysis Withdrawal
Mary K. Buss & Tamara Vesel

Chapter 17: LGBTQ: to Disclose or Not to Disclose
Gabriel Lutz

Chapter 18: Can Minors Make Major Healthcare Decisions?
Sudha Chandrasekhar

Chapter 30: Surrogate Decision Making
Margaret M. Mahon

Chapter 31: Approaching Palliative Sedation at the End of Life
Abigail Lebovitz & Tamara Vesel

Chapter 32: Advance Care Planning
Nnamdi C. Iwuala & Lauren Shaiova

Chapter 33: Substituted Judgment
Gabriel Lutz

Index