Promoting Excellence : HIV Care: An Agenda for Change : Executive Summary

HIV/AIDS is at best a chronic progressive illness that causes significant morbidity and is still incurable. For many, it remains rapidly fatal. But for other patients and their families, the advent of highly active antiretroviral therapy (HAART) brings quality of life issues and an end-of-life trajectory that differ significantly from what was seen in the early stage of the epidemic. The success of HAART for HIV/AIDS has led to a diminished emphasis on palliative care as an integral part of HIV/AIDS care. Yet at the same time, changes in the trajectory of the disease due to HAART and difficulties faced by patients unable to take HAART point to a need to address quality of life and incorporate palliative care into the standard of care for HIV - from the time of diagnosis to the end of life.

This report, written by the Promoting Excellence in End-of-Life Care Peer Workgroup on Palliative and End-of-Life Care in HIV/AIDS, an interdisciplinary group of clinicians and researchers, provides an assessment of unmet needs of HIV patients and their families with respect to comfort, quality of life and caregiver support, and calls for the re-integration of palliative care into the continuum of HIV care. The assessment is relevant to a growing number of adults, adolescents and children living with HIV/AIDS in the U.S. The Workgroup used the definition of palliative care put forth in A Clinical Guide to Supportive and Palliative Care for HIV/AIDS 2003 Edition, published by the U.S. Department of Health and Human Services' Health Resources and Services Administration HIV/AIDS Bureau:

Palliative care is patient- and family-centered care. It optimizes quality of life by active anticipation, prevention and treatment of suffering. It emphasizes use of an interdisciplinary team approach throughout the continuum of illness, placing critical importance on the building of respectful and trusting relationships. Palliative care addresses physical, intellectual, emotional, social and spiritual needs. It facilitates patient autonomy, access to information and choice.

The Workgroup on Palliative and End-of-Life Care in HIV/AIDS identified the following high priorities for improving clinical care and health service delivery in response to the most pressing needs of HIV patients and their families. The Workgroup calls on clinicians, educators, researchers, policy-makers and health care funders and payers to:

The recommendations accompanying this report address these important priorities and are intended to serve as an agenda for change.

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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.

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