Promoting Excellence : HIV / AIDS Palliative Care Workgroup : HIV Care: An Agenda for Change

Workgroup on Palliative and End-of-Life Care in HIV/AIDS Recommendations to the Field

• Definition of Terms
• Executive Summary
• Workgroup Overview
• Introduction
  • History of the Epidemic
  • Living and Dying in the Age of HAART
  • A Better Future is Possible
• Challenges and Opportunities for Change
  • Clinical Challenges and Opportunities: Re-Introducing Palliative Care into HIV Care
  • The Psychosocial Dimensions of Care
• Clinical Education Challenges and Opportunities
• Research Challenges and Opportunities
• Policy Challenges and Opportunities
• Funding Challenges and Opportunities
• Beyond the U.S.

• Recommendations to the Field: A Roadmap for Change

• End Notes
• HIV Peer Workgroup Members

• Appendices
  A. Study of the Supply, Demand and Use of Palliative Care Physicians in the United States: List of Recommendations
  B. FICA: Taking a Spiritual History
  C. Proposed Research Agenda for HIV /Palliative Care ( 81 KB / 2 pages)
  D. References
  • General
  • Caregiver

Acknowledgements
Promoting Excellence in End-of-Life Care, a national program of The Robert Wood Johnson Foundation, directed by Ira Byock, M.D., produced this publication.

Primary authors of this report are:
Carla S. Alexander, M.D., Workgroup Co-Chair
Anthony Back, M.D., Workgroup Co-Chair
The Workgroup on Palliative and End-of-Life Care in HIV/AIDS Workgroup Members
Karyn Collins, M.P.A.

Special thanks to:
Keila Szpaller for copyediting the monograph.
Sally Deane, Ed.M, M.P.H., for facilitating the Workgroup meetings.

Dedication:
The Promoting Excellence Workgroup on Palliative and End-of-Life Care in HIV/AIDS dedicates this report in memory of Dr. Gary Reiter (1955-2003). Dr. Reiter was a gifted clinician and teacher and a valued member of this Workgroup. He was tireless and courageous in advancing the science and practice of care for people affected by HIV disease.

About the AIDS Quilt Images:
The AIDS Memorial Quilt was founded in San Francisco in 1987. It is a reminder of the AIDS pandemic and commemorates the lives of loved ones who have died of AIDS. The Quilt consists of 45,000 panels and has more than 82,000 names on it. Nominated for a Nobel Peace Prize in 1989, it is the largest community art project in the world with names from every state in the U.S. and over 35 countries. The Quilt was conceived by gay-rights activist Cleve Jones, and brought to fruition by the NAMES Project Foundation whose various chapters continue to display portions of the panels throughout the country.

Ira Byock, M.D., Director
Promoting Excellence in End-of-Life Care
The University of Montana
1000 E. Beckwith, Missoula, MT 59812
Phone: 406/243-6601
Email: [email protected]

Jeanne Sheils Twohig, M.P.A., Deputy Director
Promoting Excellence in End-of-Life Care
The University of Montana
1000 E. Beckwith, Missoula, MT 59812
Phone: 406/243-6602
Email: [email protected]

April 2004

HIV/AIDS Workgroup Home

Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.