HHS Secretary Tommy G. Thompson today announced the release of A Clinical Guide to Supportive and Palliative Care for HIV/AIDS, which provides practical, experience-based advice and authoritative guidelines for clinicians in providing palliative and supportive services to their patients living with HIV/AIDS.
"President Bush and I are committed to providing compassionate care to all people who are affected by HIV/AIDS," Secretary Thompson said. "This guide urges clinicians to treat not just the symptoms of this terrible disease, but to provide care that meets the physical, emotional and spiritual needs of the individual."
HHS' Health Resources and Services Administration, through its HIV/AIDS Bureau, defines palliative care as patient- and family-centered care that optimizes quality of life by active anticipation, prevention, and treatment of suffering. Such care 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, as complementary care, should be provided throughout the course of HIV/AIDS progression, not just when a patient nears the end of life" said HRSA Administrator Elizabeth M. Duke, Ph.D. "If incorporated into clinical practice, this guide will help us realize palliative care's full potential in improving the overall quality of care and life for those living with HIV/AIDS."
Editors of the guide include: Peter A. Selwyn, M.D., M.P.H., director of the Palliative Care Program at New York's Montefiore Medical Center and professor and chairman of the Department of Family Medicine at the Albert Einstein College of Medicine; Joseph F. O'Neill, M.D., M.P.H., director of the White House Office of National AIDS Policy, and former associate administrator of HRSA's HIV/AIDS Bureau; and Helen Schietinger, M.A., A.C.R.N., a Washington-based HIV policy analyst who has worked in the field of HIV/AIDS since 1981, focusing especially on palliative and community-based care.
The clinical guide is organized into five parts, focusing on specific aspects of palliative care.
Part I: Introduction - Provides HHS' vision for use of the guide and presents an overview of the key issues in HIV/AIDS and palliative care today.
Part II: Management of Advanced HIV Disease - Addresses symptoms that cause much of the burden to patients in more advanced states of HIV disease. Parts of this section discuss the care of children and adolescents and psychiatric and substance use concerns.
Part III: Psychosocial, Cultural and Ethical Issues - Focuses on the many other dimensions included in the palliative care approach, incorporating spirituality, care for the caregiver, special populations, and ethical and legal considerations. A special section highlights palliative care in resource-poor settings.
Part IV: Care at the End of Life - Emphasizes the explicit aspects of care that are paramount when it has become clear that the patient is nearing the end of life. This section includes chapters on communication, the transition to home and hospice care, and a special section on skin breakdown.
Part V: References for the Clinician - Provides a resource appendix highlighting Web sites and sources for further reading and reference tools, and a comprehensive chapter about the pharmacologic considerations in using both HIV-related and palliative medications.
HRSA's HIV/AIDS Bureau administers the Ryan White CARE Act, which annually provides HIV/AIDS care and support services for more than 530,000 low-income, underinsured or uninsured Americans. HRSA is the lead HHS agency for improving access to health care for individuals and families nationwide.
Copies of the guide will be available online at http://hab.hrsa.gov or may be ordered from the HRSA Information Center at 1-888-ASK-HRSA (1-888-275-4772).