Promoting Excellence : HIV Care: An Agenda for Change : Recommendations to the Field: A Roadmap for Change

Quilts at the Mall in Washington D.C.The Promoting Excellence in End-of-Life Care Workgroup on Palliative and End-of-Life Care in HIV/AIDS recommends the integration of palliative care into HIV/AIDS disease management throughout the course of illness and not just at the brink of death. The Workgroup holds that truly excellent care for HIV/AIDS must always include not only the latest antiretroviral and disease-specific therapies, but also equally diligent attention to symptom relief, quality of life, and psychosocial and spiritual needs. This emphasis must be reflected in every decision, statement and policy issued by every social body that stands to influence the ways care is provided for HIV/AIDS. To that end, the Workgroup endorsed the following recommendations to provide clinicians, educators, researchers, policy-makers, funders and health care payers an agenda for change that will improve quality of life for patients, families and caregivers and increase access to optimal palliative care to complement current disease treatment and management.

 

Recommendations for Clinicians

The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on the Department of Health and Human Service's (DHHS) Public Health Service to include palliative care in the DHHS treatment guidelines for HIV/AIDS care. Likewise, other influential bodies that issue HIV/AIDS treatment directives, including the International AIDS Society (IAS), the American Academy of HIV Medicine (AAHIVM) and the HIV Medicine Association (HIVMA), must include palliative care in their comprehensive clinical guidelines.

The Workgroup calls on the Panel on Clinical Practices for Treatment of HIV Infection and the Working Group on Antiretroviral Therapy and Medical Management of HIV-infected Children to include guidelines for palliative and end-of-life care in published treatment guidelines for adults, adolescents and children with HIV infection.

The Workgroup calls on clinicians, HIV provider communities and accrediting bodies of clinical professionals to establish a standard of care for HIV/AIDS that integrates a palliative approach throughout the spectrum of care and across all settings. This standard of care must include competencies in:

The Workgroup calls on clinicians, HIV provider communities and health care systems to include palliative care and end-of-life issues in continuous quality improvement programs.

 

Recommendations for Clinical Educators

The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on educators at all levels of clinical training to advance a standard of care for patients of all ages with HIV disease (including children and adolescents) and their families that integrates palliative services and interventions, to improve comfort and quality of life throughout the continuum of care. The Workgroup asks educators to:

The Workgroup requests that the Health Resources and Services Administration (HRSA) mandate that its safety net providers (e.g., federally funded community and migrant health centers, Health Care for the Homeless Clinics and recipients of Ryan White CARE Act funding) receive training in palliative care.

The Workgroup calls on professional organizations (AIDS Action, National Organizations Responding to AIDS [NORA], the National Hospice and Palliative Care Organization [NHPCO], the American Academy of Hospice and Palliative Medicine [AAHPM], National Hospice and Palliative Care Nurses Association [NHPCA], et al.) to:

 

Recommendations for Researchers

The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on researchers and research agencies to:

 

Recommendations for Policy-Makers

The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on members of the U.S. Congress to:

The Workgroup calls on policy-makers at the Centers for Medicare and Medicaid Services (CMS) to:

The Workgroup calls on HRSA administrators of the Ryan White CARE Act program to:

The Workgroup calls on policy-makers within governmental agencies, in AIDS support organizations (ASOs) and other agencies to:

The Workgroup asks the American Bar Association and American Health Lawyers Association to convene a group to:

The Workgroup asks policy-makers at all levels and in all arenas to enact the following in coordinating efforts to improve the quality of care and quality of life for people with HIV disease and their families:

 

Recommendations for Health Care Funders

The Workgroup on Palliative and End-of-Life Care in HIV/AIDS calls on funders of clinical and health service delivery to:

 

Recommendations for Health Care Payers

The Workgroup on Palliative and End-of-Life care in HIV/AIDS calls on health care payers to:

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Promoting Excellence in End-of-Life Care is 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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