With the advent of antiretroviral therapy, many young clinical providers have not experienced the scourge of AIDS deaths, as did health care providers in the early years of the epidemic. These providers often shun the term "palliative care" because it is equated with death and doesn't seem germane to their practice. The once overlapping and the now separate worlds of HIV disease-specific care and palliative care must become parallel once again, and palliative care must be reintroduced in HIV provider training. Similarly, palliative care providers must be educated in the need for integration in HIV care. The real challenge at this time is to re-integrate the two types of care to improve the support offered people living with HIV disease and to make advance care planning a part of disease management.
Unfortunately, due to time, logistics and cost constraints, national palliative care training is not yet readily accessible to most clinicians. While curricula are being developed it will be of great importance that those with the knowledge of HIV management are included as members of the team to adapt palliative techniques to the specifics of HIV disease.
Although excellent and successful, most palliative care educational opportunities are designed as general-purpose palliative care curricula; they do not highlight the emerging palliative care issues relevant to antiretroviral therapy and other aspects of HIV/AIDS clinical care. However, some national programs are emerging that can be adapted for palliative care specific to HIV/AIDS: the EPEC (Education on Palliative and End-of-Life Care) program based at Northwestern University; EPERC (End of Life/Palliative Education Resource Center), an online community of educational scholars sponsored by The Robert Wood Johnson Foundation and the University of Wisconsin; the American Association of Colleges of Nursing ELNEC (End-of-Life Nursing Education Consortium) Project; Veterans Administration (VA) training resources; the Harvard Program in Palliative Care Practice; and the West Coast Center for Palliative Education and Research (WCCPER) at the University of California Davis. These programs can be held up as models for expanding other training programs.
A palliative care core curriculum includes topics such as pain and symptom management, ethical and legal issues, communication, cultural considerations, quality care at the end of life, and grief, loss and bereavement. The Workgroup on Palliative and End-of-Life Care in HIV/AIDS notes the importance of innovative educational programs in palliative care that teach attitudes as well as content, such as the Harvard program, that combines content-based learning with reflective sessions that enable clinicians to explore their own values. Most successful training programs include written and didactic material, interactive discussions, and practical exercises such as role modeling and role-playing with people living with HIV/AIDS and cultural exposure to various ethnic and socioeconomic groups. Clinicians in the University of Washington (UW) Center for Palliative Care Education at the Northwest AIDS Education and Training Center (NW AETC) program hold communications retreats, using practice sessions with actors to provide clinicians mentored feedback by faculty specially trained in communication skills.
The University of Washington NW AETC Center for Palliative Care Education program focuses specifically on palliative care for HIV/AIDS patients. It is the result of collaboration between the Health Resources Services Administration (HRSA) and The Robert Wood Johnson Foundation (through the Promoting Excellence in End-of-Life Care program), and was formed to serve as a national resource on HIV/AIDS palliative care. As such, the NW AETC was contracted to develop curricula for the national AETCs; this curriculum is divided into modules addressing the following topics:
More educational programs such as this one that address the contemporary realities of HIV disease are needed. A needs assessment survey of HIV/AIDS clinicians and educators throughout the northwest, conducted by the UW Center for Palliative Care Education, revealed an interest in training in palliative care topics, particularly in managing pain, addressing cultural needs, managing emotional suffering and ethics.
It will be important for emerging programs to include core concepts, such as the following "Seven End-of-Life Care Domains." The Promoting Excellence in End-of-Life Care Critical Care Peer Workgroup developed these domains specifically for critical care settings, but they are applicable to HIV/AIDS care:
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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.