Habx-000 Cov 1/28/03 11:13 AM Page 1 FrontMatter.p65 2 1/28/03, 10:27 AM Dedication A Clinical Guide to Supportive and Palliative Care for HIV/AIDS is dedicated to Belynda Dunn, an inspirational leader and beautiful role model, who brought hope, joy and love to so many people. Her faith was deep and powerful and sustained her throughout her life. ACKNOWLEDGMENTS The contributions of many special people made this guide possible. Thanks go to Magda Barini-Garcia, MD, the Project Officer, who skillfully oversaw and managed the project’s progress and quality, and Joan Holloway whose gift for art and innovation assured the guide’s look and practicality. Credit is also due to Kim Dickerson, who designed and produced the guide, and Susan Lawrence, who was the copy editor. ABOUT THE EDITORS Joseph F. O’Neill is Director of the White House Office of National AIDS Policy. Prior to that he was Associate Administrator of the HIV/AIDS Bureau, Health Resources and Services Administration, U. S. Department of Health and Human Services. Peter A. Selwyn is Director of the Palliative Care Program at Montefiore Medical Center as well as Professor and Chairman of the Department of Family Medicine at the Albert Einstein College of Medicine. Helen Schietinger has worked in the field of HIV/AIDS since 1981, focusing especially on palliative and community-based care. ii Front Matter 1-24-03.p65 4 1/28/2003, 10:08 AM CONTRIBUTING AUTHORS Carla S Alexander, MD Maria Farooqi, MD Assistant Professor of Medicine, Medical Fellow, Palliative Care Program Director of Palliative Care, Institute of Human Lombardi Cancer Center Virology, School of Medicine, University of Georgetown University Medical Center Maryland, Baltimore, MD Washington, DC Felicity Aulino Kathleen M Foley, MD Open Society Institute Director, Open Society Institute Project on Death in America Project on Death in America New York, NY Memorial Sloan-Kettering Cancer Center New York, NY Anthony Back, MD Associate Professor, Department of Medicine/ Oncology, University of Washington Marshall Forstein, MD Director of Palliative Care, VA Puget Sound Assistant Professor of Psychiatry Health Care System, Seattle, WA Harvard Medical School The Cambridge Hospital Magda Barini-García, MD, MPH Boston, MA Chief Medical Officer, Division of Training & Technical Assistance Suzanne R Garnier, RN, BSN, CWOCN HIV/AIDS Bureau, HRSA Health at Home, Home Health Agency of Rockville, MD the Community Health Network San Francisco Department of Public Health Connie J Beehler, MD San Francisco, CA Medical Director Hospice at Riverside & Grant Columbus, OH Robert Greenwald, JD Senior Clinical Instructor William Breitbart, MD Harvard Law School Chief, Psychiatry Service, Department of Cambridge, MA Psychiatry & Behavioral Sciences Memorial Sloan-Kettering Cancer Center Rocío Hurtado, MD New York, NY Clinical HIV Fellow at Brigham & Women’s Hospital, Combined Infectious Disease Gary T Chiodo, DMD Fellow at Massachusetts General Hospital Professor, Department of Community and Brigham & Women’s Hospital Dentistry, School of Dentistry Harvard Medical School, Boston, MA Oregon Health & Science University Portland, OR Nancy Hutton, MD Associate Professor of Pediatrics J Randall Curtis, MD, MPH Johns Hopkins University School of Medicine Associate Professor of Medicine Baltimore, MD Division of Pulmonary & Critical Care University of Washington Seattle, WA Jane M Ingham, MD, BS, FRACP Director, Palliative Care Program Nima Eshghi, JD Lombardi Cancer Center Clinical Instructor Associate Professor, Departments of Oncology & Harvard Law School Medicine Georgetown University Medical Cambridge, MA Center Washington, DC iii Front Matter 1-24-03.p65 5 1/28/2003, 10:08 AM Lynn A Jansen, RN, PhD Justina E Ogbuokiri, PharmD, FASCP Assistant Research Professor & Senior Medical Associate Professor of Clinical Pharmacy Ethicist, The John J Conley Department of Xavier University of Louisiana Ethics, New York Medical College, New York, NY New Orleans, LA Barbara E Johnston, MD James M Oleske, MD, MPH Deputy Director of HIV Medicine François-Xavier Bagnoud Professor of St Vincent’s Hospital-Manhattan Pediatrics New York, NY Director, Division of Pulmonary, Allergy, Immunology & Infectious Diseases, Department of Pediatrics, New Jersey Medical School, David J Kouba, MD, PhD Newark, NJ Department of Dermatology Johns Hopkins University School of Medicine Joseph F O’Neill, MD, MPH Baltimore, MD Director, Office of National AIDS Policy The White House Eric L Krakauer, MD, PhD Washington, DC Instructor in Medicine & Social Medicine Department of Social Medicine, Harvard Margaret Perrone, RN, CHPN Medical School, Associate Director, Coordinator, Palliative Care Program Palliative Care Service,Massachusetts University of Maryland Medical Center General Hospital, Boston, MA Baltimore, MD Harlee S Kutzen, MN, ACRN Christina M Puchalski, MD HIV Palliative Care Nurse Specialist Director, The George Washington Institute of PalCare - A Palliative Care Program for Persons Spirituality and Health with Advanced HIV/AIDS Assistant Professor of Medicine, School of Project Director, Louisiana State University Medicine & Health Sciences, George Medical Center/HIV Division Washington University, Washington, DC New Orleans, LA Elizabeth A Keene Reder, MA Bereavement Coordinator, Harriet Lane John F Linder, MSW, LCSW Compassionate Care Clinical Social Worker & Researcher Johns Hopkins Children’s Center Department of Internal Medicine, Baltimore, MD University of California at Davis, UCD Cancer Center Davis, CA Mimi Rivard, ANP, MSN Clinical Care Coordinator, HIV Palliative Care Ciro R Martins, MD Program, Montefiore Medical Center Assistant Professor of Dermatology Albert Einstein College of Medicine School of Medicine Bronx, NY Johns Hopkins University Baltimore, MD David I Rosenstein, DMD, MPH Professor & Chair, Department of Community Martha M McKinney, PhD Dentistry, School of Dentistry President Oregon Health & Science University Community Health Solutions, Inc Portland, OR Richmond, KY Rev Carlos Sandoval, MD Assistant Professor, Department of Psychiatry, Frederick J Meyers MD University of Miami School of Medicine Professor & Chair, Department of Internal Director, Courtelis Center for Psychosocial Medicine, University of California Davis Oncology, Sylvester Comprehensive Cancer Health System, Sacramento, CA Center, Miami, FL iv Front Matter 1-24-03.p65 6 1/28/2003, 10:08 AM Helen Schietinger, MA, ACRN HIV Policy Analyst, Domestic & International Program Development & Evaluation Washington, DC Peter A Selwyn, MD, MPH Professor & Chairman Department of Family Medicine Director, Palliative Care Program Montefiore Medical Center Albert Einstein College of Medicine Bronx, NY Jan Stjernsward, MD, PhD, RRCP International Director Oxford International Centre for Palliative Care Oxford, United Kingdom Daniel P Sulmasy, OFM, MD, PhD Professor of Medicine Director, Bioethics Institute New York Medical College New York, NY Demia L Sundra, MPH ASPH/CDC Research Fellow National Center for Chronic Disease Prevention & Health Promotion Centers for Disease Control & Prevention Atlanta, GA Jean Tuthill, RN, MSN, CWOCN Wound/Ostomy Consultant Program Development/Clinical Consultation Fairfax, CA Michael Wohlfeiler, MD, JD Medical Director for Special Immunology Services, Mercy Hospital Miami, FL v Front Matter 1-24-03.p65 7 1/28/2003, 10:08 AM Front Matter 1-24-03.p65 8 1/28/2003, 10:08 AM TABLE OF CONTENTS Part I Introduction Chapter 1 HIV and Palliative Care Joseph F O’Neill & Magda Barini-García . 1 Chapter 2 Overview of Clinical Issues Peter A Selwyn & Mimi Rivard . 5 Part II Management of Advanced HIV Disease Chapter 3 Assessment of Physical Symptoms Jane M Ingham & Maria Farooqi . 37 Chapter 4 Pain William Breitbart . 85 Chapter 5 Constitutional Symptoms Rocío Hurtado & Eric L Krakauer . 123 Chapter 6 Pulmonary Symptoms Connie J Beehler . 135 Chapter 7 Gastrointestinal Symptoms Michael Wohlfeiler . 157 Chapter 8 Oral Problems David I Rosenstein & Gary T Chiodo . 167 Chapter 9 Dermatologic Problems David J Kouba & Ciro R Martins . 177 Chapter 10 Psychiatric Problems Marshall Forstein . 207 Chapter 11 Substance Use Problems Joseph F O’Neill & Peter A Selwyn . 253 Chapter 12 The Care of Children and Adolescents Nancy Hutton & James M Oleske . 267 Part III Psychosocial, Cultural and Ethical Issues Chapter 13 Spiritual Care Christina M Puchalski & Carlos Sandoval . 289 Chapter 14 Culture and Care Carlos Sandoval . 301 Chapter 15 Special Populations Carla S Alexander & Helen Schietinger . 315 Chapter 16 Grief and Bereavement Elizabeth A Keene Reder . 329 Chapter 17 Ethical Issues Lynn A Jansen, Barbara E Johnston & Daniel P Sulmasy . 349 Chapter 18 Legal and Financial Issues Robert Greenwald & Nima Eshghi . 365 Chapter 19 Palliative Care in Resource-Poor Settings Kathleen M Foley, Felicity Aulino & Jan Stjernsward . 387 Chapter 20 Care for the Caregiver Joseph F O’Neill & Martha M McKinney . 409 vii Front Matter 1-24-03.p65 9 1/28/2003, 10:08 AM Part IV Care at the End of Life Chapter 21 Patient-Clinician Communication J Randall Curtis . 431 Chapter 22 Facilitating the Transition to Home-Based and Hospice Care Harlee S Kutzen . 447 Chapter 23 Medical Care in Advanced AIDS Frederick J Meyers & John F Linder . 479 Chapter 24 Medical Care at the End of Life Carla S Alexander, Anthony Back & Margaret Perrone . 493 Chapter 25 Prevention of Skin Breakdown Jean Tuthill & Suzanne R Garnier . .505 Part V References for the Clinician Chapter 26 Resources Magda Barini-García