HIV / AIDS Palliative Care Workgroup

Mission Statement: To improve the comfort and quality of life for patients, families and caregivers impacted by HIV/AIDS throughout the trajectory of illness and particularly in advanced stages near the end of life. The workgroup will establish an agenda to increase access to optimum supportive care and ultimate improved quality of life to accompany current treatment and management.

HIV/AIDS is a chronic progressive illness that causes significant morbidity and is still incurable. This 23-member workgroup of clinicians and researchers, co-chaired by Carla S. Alexander, M.D. (Clinical Assistant Professor of Medicine at the University of Maryland) and Anthony L. (Tony) Back, M.D. (Associate Professor of Medicine at the University of Washington) met from February 2002 - April 2003. Using the HRSA definition of palliative care in HIV/AIDS that integrates palliative care throughout the trajectory of illness (*see below), the Workgroup focused on the new challenges of treating the disease since the advent of HAART. The Recommendations to the Field summary provides an assessment of palliative care needs that remain unmet in the post-HAART era. The most pressing unmet needs include:

• Systems of care that effectively manage sequellae of HAART therapy coupled with the complexity of care for those with multiple psychiatric or social issues
• Funding mechanisms that support the integration of palliative care into existing systems of care
• Research to identify sentinel events in the trajectory of dying for patients for whom HAART begins to fail or for whom other illnesses such as liver failure supervene
• Definition and creation of a palliative care curriculum relevant to the particular needs of patients with HIV/AIDS
• Recognition and perseverance by clinicians and researchers to continue improving quality of life and, in particular, integrating palliative care into HIV management.

The success of HAART for HIV/AIDS has led to a diminished emphasis on palliative care as part of HIV/AIDS care. However, the palliative care issues raised by the workgroup are relevant to a growing number of adults and children living with HIV/AIDS in the United States and internationally.

*Palliative Care in HIV/AIDS, as defined by HRSA:

• Palliative care in HIV/AIDS disease is that care which is patient- and family-centered and optimizes quality of life by active anticipation, prevention and treatment of suffering through respectful and trusting relationships formed with an interdisciplinary team throughout the continuum of illness, addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information and choice. Palliative care extends throughout the continuum of disease.

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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.