"...represents an important milestone in the evolution of care for people with advanced disease'-for which its editors and authors and JAMA should be rightly proud. It is wonderful that JAMA had the foresight to publish a series on this topic, which, as medicine has become more technologically advanced and subspecialized, is often overlooked and, sometimes worse, avoided....this book will be invaluable for front-line clinicians, and indeed all health care practitioners'as care at the close of life is a part of almost all of medicine's specialties and settings."--Irene J. Higginson, BMBS, PhD, FPPHM, FRCP; Dept. of Palliative Care, Policy, & Rehabilitation; Cicely Saunders Institute; King's College London (from the foreword)
A new addition to the JAMAevidence series, Care at the Close of Life: Evidence and Experience offers evidence-based and clinical expert guidance on caring for patients with life-limiting illness, incorporating the words and perspectives of affected patients, their families, and treating cliniciansOrganized by these actual clinical cases, the book is based on the acclaimed 7-year series of 42 articles, originally published in JAMA as 'Perspectives on Care at the Close of Life,' and now thoroughly updated as chapters and featuring extensive never-before-published material. Care at the Close of Life covers are a wide range of clinical syndromes, disease processes, communication challenges, health-care delivery settings, and issues faced by patients, including withdrawal of dialysis and other life-sustaining measures, cross-cultural approaches, and the role of chemotherapy. Throughout the book, emphasis is on the principles of palliative care, with the patient and family at the center of care, and with attention given to all problems'physical, psychological, social, and spiritual.
Reflecting this focus, each chapter begins with a patient case study to introduce the clinical problem, followed by 'perspectives' that draw on extensive, real-world dialogue between clinicians, patients, and families. Internationally renowned authors then review the typical challenges illustrated by the case, offering state-of-the-art, evidence-based assessment and treatment approaches
Contributors
Foreword, Irene J. Higginson, BMBS, PhD, FFPHM, FRCP
Preface
Acknowledgments
A. COMMUNICATION ISSUES
1. Initiating End-of-Life Discussions with Seriously Ill Patients: Addressing the "Elephant in the Room," Timothy E. Quill, MD
2. Beyond Advance Directives: Importance of Communication Skills for Care at the End of Life, James A. Tulsky, MD
3. Decision Making at a Time of Crisis Near the End of Life, David E. Weissman, MD
4. Dealing With Conflict in Caring for the Seriously Ill: 'It Was Just Out of the Question,' Anthony L. Black, MD; and Robert M. Arnold, MD
B. SYMPTOM MANAGEMENT
5. Managing an Acute Pain Crisis in a Patient With Advanced Cancer: 'This Is as Much of a Crisis as a Code,' Natalie Moryl, MD; Nessa Coyle, NP, PhD; Kathleen M. Foley, MD
6. Management of Dyspnea in Patients With Far-Advanced Lung Disease: 'Once I Lose It, It's Kind of Hard to Catch It',' John M. Luce, MD; Judith A. Luce, MD
7. Management of Intractable Nausea and Vomiting in Patients at the End of Life: 'I Was Feeling Nauseous All of the Time'Nothing Was Working,' Gordon J. Wood, MD; Joseph W. Shega, MD; Beth Lynch, NP; Jamie H. von Roenn, MD
8. Palliative Care for Frail Older Adults: 'There Are Things I Can't Do Anymore That I Wish I Could',' Kenneth S. Boockvar, MD, MS; Diane E. Meier, MD
9. Palliative Management of Fatigue at the Close of Life: 'It Feels Like My Body Is Just Worn Out,' Sriram Yennurajalingam, MD; Eduardo Bruera, MD
10. Spinal Cord Compression in Patients With Advanced Metastatic Cancer: 'All I Care About Is Walking and Living My Life," Janet L. Abraham, MD; Michael B. Bannffy, MD; Mitchel B. Harris, MD
11. Agitation and Delirium at the End of Life: 'We Couldn't Manage Him," William Breitbart, MD; Yesnea Alici, MD
C. DISEASE MANAGEMENT
12. Alzheimer Disease: 'It's OK, Mama, If You Want to Go, It's OK,' Ann C. Hurley, RN, DNSc; Ladislav Volicer, MD, PhD
13. Practical Considerations in Dialysis Withdrawal: 'To Have That Option Is a Blessing,' Lewis M. Cohen, MD; Michael J. Germain, MD; David M. Poppel, MD
14. Overcoming the False Dichotomy of Curative vs Palliative Care for Late-Stage HIV/AIDS: 'Let Me Live the Way I Want to Live, Until I Can't,' Peter A. Selwyn, MD, MPH; Marshall Forstein, MD
15. Palliative Care for Patients With Heart Failure, Steven Z. Pantilat, MD; Anthony E. Steimle, MD
16. Integrating Palliative Care for Liver Transplant Candidates: 'Too Well for Transplant, Too Sick for Life,' Anne M. Larson, MD; J. Randall Curtis, MD, MPH
17. Palliative Care for Patients With Amyotrophic Lateral Sclerosis: 'Prepare for the Worst and Hope for the Best,' Hiroshi Mitsumoto, MD, DSc; Judith G. Rabkin, PhD, MPH
18. Palliative Care for Patients With Head and Neck Cancer: 'I Would Like a Quick Return to a Normal Lifestyle," Nathan E. Goldstein, MD; Eric Genden, MD; R. Sean Morrison, MD
D. OTHER PATIENT MANAGEMENT ISSUES
19. Complexities in Prognostication in Advanced Cancer: 'To Help Them Live Their Lives the Way They Want," Elizabeth B. Lamont, MD, MS; Nicholas A. Christakis, MD, PhD, MPH
20. Caring for the Child With Cancer at the Close of Life: 'There Are People Who Make It, and I'm Hoping I'm One of Them," Craig A. Hurwitz, MD; Janet Duncan, MSN, CPNP; Joanne Wolfe, MD, MPH
21. Sudden Traumatic Death in Children: 'We Did Everything, But Your Child Didn't Survive," Robert D. Truog, MD; Grace Christ, DSW; David M. Browning, MSW; Elaine C. Meyer, PhD, RN
22. The Role of Chemotherapy at the End of Life: 'When Is Enough, Enough?" Sarah E. Harrington, MD; Thomas J. Smith, MD
23. Palliative Care in the Final Days of Life: 'They Were Expecting It at Any Time,' James Hallenbeck, MD
E. PSYCHOLOGICAL, SOCIAL, AND SPIRITUAL ISSUES
24. Psychological Considerations, Growth, and Transcendence at the End of Life: The Art of the Possible, Susan D. Block, MD
25. Caring for Bereaved Patients: 'All the Doctors Just Suddenly Go,' Holly Gwen Prigerson, PhD; Selby C. Jacobs, MD, MPH
26. Adolescent Grief: 'It Never Really Hit Me'Until It Actually Happened,' Grace H. Christ, DSW; Karolynn Siegel, PhD; Adolph E. Christ, MD, DrMSc
27. Dignity-Conserving Care'-A New Model for Palliative Care: Helping the Patient Feel Valued, Harvey Max Chochinov, MD, PhD, FRSC
28. Physician Opportunities to Support Family Caregivers at the End of Life: 'They Don't Know What They Don't Know,' Michael W. Rabow, MD; Joshua M. Hauser, MD; Jocelia Adams, MD
29. Spiritual Issues in the Care of Dying Patients: ''It's OK Between Me and God," Daniel P. Sulmasy, OFM, MD, PhD
F. ETHICAL ISSUES
30. Responding to Requests for Physician-Assisted Suicide: 'These Are Uncharted Waters for Both of Us'," Paul B. Bascom, MD; Susan W. Tolle, MD
31. Palliative Sedation in Dying Patients: 'We Turn to It When Everything Else Hasn't Worked,' Bernard Lo, MD; Gordon Rubenfeld, MD, MSc
G: CROSS-CULTURAL AND SPECIAL POPULATIONS ISSUES
32. Negotiating Cross-Cultural Issues at the End of Life: 'You Got to Go Where He Lives,' Marjorie Kagawa-Singer, PhD, MA, MN, RN;Leslie J. Blackhall, MD, MTS
33. Palliative Care for Latino Patients and Their Families: 'Whenever We Prayed, She Wept," Alexander K. Smith, MD, MS, MPH; Rebecca L. Sudore, MD; Eliseo J. P?rez-Stable, MD
34. End-of-Life Care for Homeless Patients: 'She Says She Is There to Help Me in Any Situation,' Margot B. Kushel, MD; Christine Miaskowski, RN, PhD
35. Palliative Care for Prison Inmates: 'Don't Let Me Die in Prison," John F. Linder, MSW, LCSW; Frederick J. Meyers, MD
H: SETTINGS FOR CARE (Structural Issues)
36. The Role of Hospice and Other Services: Serving Patients Who May Die Soon and Their Families, Joanne Lynn, MD, MS
37. Secondary and Tertiary Palliative Care in Hospitals, Charles F. van Gunten, MD, PhD
38. Withdrawal of Life Support: Intensive Caring at the End of Life, Thomas J. Prendergast, MD; Kathleen A. Puntillo, RN, DNSc
39. Meeting Palliative Care Needs in Post'Acute Care Settings: 'To Help Them Live Until They Die,' Laura C. Hanson, MD, MPH; Mary Ersek, PhD, RN
40. Referring a Patient and Family to High-Quality Palliative Care at the Close of Life: 'We Met a New Personality'With This Level of Compassion and Empathy," Joan M. Teno, MD, MS; Stephen R. Connor, PhD
I. CLINICIAN SELF-CARE
41. Care of the Dying Doctor: On the Other End of the Stethoscope, Erik Fromme, MD; J. Andrew Billings, MD
42. Self-Care of Physicians Caring for Patients at the End of Life: 'Being Connected'A Key to My Survival,' Michael K. Kearney, MD; Radhule B. Weininger, MD, PhD; Mary L. S. Vachon, RN, PhD; Richard L. Harrison, PhD; Balfour M. Mount, MD
Answers to Chapter Questions
Glossary
Index