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Providing Quality HIV Care

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS

U.S. Health Resources and Services Administration

    Table of Contents

    Part I. Introduction

    Part II. Management of Advanced HIV Disease

    Part III. Psychosocial, Cultural and Ethical Issues

    Part IV. Care at the End of Life

    Part V. References for the Clinician

    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.

    Acknowledgements

    The contributions of many special people made this guide possible. Thanks go to Magda Barini-Garcia, M.D., 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.

    Contributing Authors

    Carla S. Alexander, M.D.
    Assistant Professor of Medicine, Medical Director of Palliative Care, Institute of Human Virology, School of Medicine, University of Maryland, Baltimore, MD

    Felicity Aulino
    Open Society Institute Project on Death in America New York, NY

    Anthony Back, M.D.
    Associate Professor, Department of Medicine/Oncology, University of Washington Director of Palliative Care, VA Puget Sound Health Care System, Seattle, WA

    Magda Barini-García, M.D., M.P.H.
    Chief Medical Officer, Division of Training & Technical Assistance HIV/AIDS Bureau, HRSA Rockville, MD

    Connie J. Beehler, M.D.
    Medical Director Hospice at Riverside & Grant Columbus, OH

    William Breitbart, M.D.
    Chief, Psychiatry Service, Department of Psychiatry & Behavioral Sciences Memorial Sloan-Kettering Cancer Center New York, NY

    Gary T. Chiodo, D.M.D.
    Professor, Department of Community Dentistry, School of Dentistry Oregon Health & Science University Portland, OR

    J. Randall Curtis, M.D., M.P.H.
    Associate Professor of Medicine Division of Pulmonary & Critical Care University of Washington Seattle, WA

    Nima Eshghi, J.D.
    Clinical Instructor Harvard Law School Cambridge, MA

    Maria Farooqi, M.D.
    Fellow, Palliative Care Program Lombardi Cancer Center Georgetown University Medical Center Washington, DC

    Kathleen M. Foley, M.D.
    Director, Open Society Institute Project on Death in America Memorial Sloan-Kettering Cancer Center New York, NY

    Marshall Forstein, M.D.
    Assistant Professor of Psychiatry Harvard Medical School The Cambridge Hospital Boston, MA

    Suzanne R. Garnier, R.N., B.S.N., C.W.O.C.N.
    Health at Home, Home Health Agency of the Community Health Network San Francisco Department of Public Health San Francisco, CA

    Robert Greenwald, J.D.
    Senior Clinical Instructor Harvard Law School Cambridge, MA

    Rocío Hurtado, M.D.
    Clinical HIV Fellow at Brigham & Women's Hospital, Combined Infectious Disease Fellow at Massachusetts General Hospital and Brigham & Women's Hospital Harvard Medical School, Boston, MA

    Nancy Hutton, M.D.
    Associate Professor of Pediatrics Johns Hopkins University School of Medicine Baltimore, MD

    Jane M. Ingham, M.D., B.S., F.R.A.C.P.
    Director, Palliative Care Program Lombardi Cancer Center Associate Professor, Departments of Oncology & Medicine Georgetown University Medical Center Washington, DC

    Justina E. Ogbuokiri, Pharm.D., F.A.S.C.P.
    Associate Professor of Clinical Pharmacy Xavier University of Louisiana New Orleans, LA

    James M. Oleske, M.D., M.P.H.
    François-Xavier Bagnoud Professor of Pediatrics Director, Division of Pulmonary, Allergy, Immunology & Infectious Diseases, Department of Pediatrics, New Jersey Medical School, Newark, NJ

    Joseph F. O'Neill, M.D., M.P.H.
    Director, Office of National AIDS Policy The White House Washington, DC

    Margaret Perrone, R.N., C.H.P.N.
    Coordinator, Palliative Care Program University of Maryland Medical Center Baltimore, MD

    Christina M. Puchalski, M.D.
    Director, The George Washington Institute of Spirituality and Health Assistant Professor of Medicine, School of Medicine & Health Sciences, George Washington University, Washington, DC

    		Elizabeth A, Keene Reder, M.A.
    Bereavement Coordinator, Harriet Lane Compassionate Care Johns Hopkins Children's Center Baltimore, MD

    Mimi Rivard, A.N.P., M.S.N.
    Clinical Care Coordinator, HIV Palliative Care Program, Montefiore Medical Center Albert Einstein College of Medicine Bronx, NY

    David I. Rosenstein, D.M.D., M.P.H.
    Professor & Chair, Department of Community Dentistry, School of Dentistry Oregon Health & Science University Portland, OR

    Rev. Carlos Sandoval, M.D.
    Assistant Professor, Department of Psychiatry, University of Miami School of Medicine Director, Courtelis Center for Psychosocial Oncology, Sylvester Comprehensive Cancer Center, Miami, FL

    Lynn A. Jansen, R.N., Ph.D.
    Assistant Research Professor & Senior Medical Ethicist, The John J. Conley Department of Ethics, New York Medical College, New York, NY

    Barbara E. Johnston, M.D.
    Deputy Director of HIV Medicine St Vincent's Hospital-Manhattan New York, NY

    David J. Kouba, M.D., Ph.D.
    Department of Dermatology Johns Hopkins University School of Medicine Baltimore, MD

    Eric L. Krakauer, M.D., Ph.D.
    Instructor in Medicine & Social Medicine Department of Social Medicine, Harvard Medical School, Associate Director, Palliative Care Service,Massachusetts General Hospital, Boston, MA

    Harlee S. Kutzen, M.N., A.C.R.N.
    HIV Palliative Care Nurse Specialist PalCare -- A Palliative Care Program for Persons with Advanced HIV/AIDS Project Director, Louisiana State University Medical Center/HIV Division New Orleans, LA

    John F. Linder, M.S.W., L.C.S.W.
    Clinical Social Worker & Researcher Department of Internal Medicine, University of California at Davis, UCD Cancer Center Davis, CA

    Ciro R. Martins, M.D.
    Assistant Professor of Dermatology School of Medicine Johns Hopkins University Baltimore, MD

    Martha M. McKinney, Ph.D.
    President
    Community Health Solutions, Inc Richmond, KY

    Frederick J. Meyers, M.D.
    Professor & Chair, Department of Internal Medicine, University of California Davis Health System, Sacramento, CA

    Helen Schietinger, M.A., A.C.R.N.
    HIV Policy Analyst, Domestic & International Program Development & Evaluation Washington, DC

    Peter A. Selwyn, M.D., M.P.H.
    Professor & Chairman Department of Family Medicine Director, Palliative Care Program Montefiore Medical Center Albert Einstein College of Medicine Bronx, NY

    Jan Stjernsward, M.D., Ph.D., R.R.C.P.
    International Director Oxford International Centre for Palliative Care Oxford, United Kingdom

    Daniel P. Sulmasy, O.F.M., M.D., Ph.D.
    Professor of Medicine Director, Bioethics Institute New York Medical College New York, NY

    Demia L. Sundra, M.P.H.
    ASPH/CDC Research Fellow National Center for Chronic Disease Prevention & Health Promotion Centers for Disease Control & Prevention Atlanta, GA

    Jean Tuthill, R.N., M.S.N., C.W.O.C.N.
    Wound/Ostomy Consultant Program Development/Clinical Consultation Fairfax, CA

    Michael Wohlfeiler, M.D., J.D.
    Medical Director for Special Immunology Services, Mercy Hospital Miami, FL

    Joseph F. O'Neill, M.D., M.P.H.

    U.S. Health Resources and Services Administration

    U.S. Health Resources and Services Administration