Care at the Close of Life: Evidence and Experience

Professor of MedicineDivision of General Internal MedicineDepartment of MedicineUniversity of California, San Francisco Professor of Medicine Division of General Internal MedicineDepartment of MedicineUniversity of California, San Francisco

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 ofCommunication Skills for Care at the End of Life, James A. Tulsky, MD
3. Decision Making at a Time of Crisis Near the Endof 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 WithAdvanced Cancer: “This Is as Much of a Crisis asa Code,” Natalie Moryl, MD; Nessa Coyle, NP, PhD; Kathleen M. Foley, MD
6. Management of Dyspnea in Patients WithFar-Advanced Lung Disease: “Once I Lose It, It’sKind of Hard to Catch It…,” John M. Luce, MD; Judith A. Luce, MD
7. Management of Intractable Nausea and Vomitingin Patients at the End of Life: “I Was FeelingNauseous 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 AreThings 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 ofLife: “It Feels Like My Body Is Just Worn Out,” Sriram Yennurajalingam, MD; Eduardo Bruera, MD
10. Spinal Cord Compression in Patients With AdvancedMetastatic Cancer: “All I Care About Is Walking andLiving My Life," Janet L. Abraham, MD; Michael B. Bannffy, MD; Mitchel B. Harris, MD
11. Agitation and Delirium at the End of Life: “WeCouldn’t Manage Him," William Breitbart, MD; Yesnea Alici, MD
C. DISEASE MANAGEMENT
12. Alzheimer Disease: “It’s OK, Mama, If You Wantto 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 vsPalliative Care for Late-Stage HIV/AIDS: “Let MeLive 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 AmyotrophicLateral Sclerosis: “Prepare for the Worst andHope for the Best,” Hiroshi Mitsumoto, MD, DSc; Judith G. Rabkin, PhD, MPH
18. Palliative Care for Patients With Head and NeckCancer: “I Would Like a Quick Return to a NormalLifestyle," Nathan E. Goldstein, MD; Eric Genden, MD; R. Sean Morrison, MD
D. OTHER PATIENT MANAGEMENT ISSUES
19. Complexities in Prognostication in AdvancedCancer: “To Help Them Live Their Lives the WayThey Want," Elizabeth B. Lamont, MD, MS; Nicholas A. Christakis, MD, PhD, MPH
20. Caring for the Child With Cancer at the Close ofLife: “There Are People Who Make It, and I’mHoping I’m One of Them," Craig A. Hurwitz, MD; Janet Duncan, MSN, CPNP; Joanne Wolfe, MD, MPH
21. Sudden Traumatic Death in Children: “We DidEverything, 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 IsEnough, Enough?" Sarah E. Harrington, MD; Thomas J. Smith, MD
23. Palliative Care in the Final Days of Life: “TheyWere Expecting It at Any Time,” James Hallenbeck, MD
E. PSYCHOLOGICAL, SOCIAL, AND SPIRITUAL ISSUES
24. Psychological Considerations, Growth, andTranscendence at the End of Life: The Art ofthe Possible, Susan D. Block, MD
25. Caring for Bereaved Patients: “All the DoctorsJust Suddenly Go,” Holly Gwen Prigerson, PhD; Selby C. Jacobs, MD, MPH
26. Adolescent Grief: “It Never Really Hit Me…UntilIt Actually Happened,” Grace H. Christ, DSW; Karolynn Siegel, PhD; Adolph E. Christ, MD, DrMSc
27. Dignity-Conserving Care—-A New Model forPalliative Care: Helping the Patient Feel Valued, Harvey Max Chochinov, MD, PhD, FRSC
28. Physician Opportunities to Support FamilyCaregivers at the End of Life: “They Don’tKnow 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-AssistedSuicide: “These Are Uncharted Waters forBoth of Us…," Paul B. Bascom, MD; Susan W. Tolle, MD
31. Palliative Sedation in Dying Patients: “We Turn toIt 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 ofLife: “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. Pérez-Stable, MD
34. End-of-Life Care for Homeless Patients: “She SaysShe 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 MeDie 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: ServingPatients 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 theEnd of Life, Thomas J. Prendergast, MD; Kathleen A. Puntillo, RN, DNSc
39. Meeting Palliative Care Needs in Post–Acute CareSettings: “To Help Them Live Until They Die,” Laura C. Hanson, MD, MPH; Mary Ersek, PhD, RN
40. Referring a Patient and Family to High-QualityPalliative Care at the Close of Life: “We Met aNew Personality…With This Level of Compassionand Empathy," Joan M. Teno, MD, MS; Stephen R. Connor, PhD
I. CLINICIAN SELF-CARE
41. Care of the Dying Doctor: On the Other End ofthe Stethoscope, Erik Fromme, MD; J. Andrew Billings, MD
42. Self-Care of Physicians Caring for Patients at theEnd 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