The following definitions were developed by the Workgroup on Palliative and End-of-Life Care in HIV/AIDS to assist readers of this report.
Any member of the patient's network of family or friends who provides emotional support and/or physical care for the patient. At times, a person might be employed to serve in this role.
A pattern of values, beliefs and behaviors shared by people with similar ethnic backgrounds, languages, religions, family values and/or life views, which provides them with their identities and a framework for understanding experience.
A comprehensive plan for managing the entire trajectory of HIV/AIDS that maximizes patient function and quality of life through disease-specific management, education and supportive care.
A preferred term in discussing treatment options for HIV/AIDS, which are aimed at slowing or reversing the overall course of the underlying disease process. The essential goal of antiretroviral therapy is to suppress viral replication, with the hope of restoring more normal immune function.
Connotes those who have a close connection to an individual, regardless of their genetic or legal ties.
Interdisciplinary Care Team
A team of caregivers from different professional disciplines and/or services who work together to deliver palliative care services focused on care planning, optimizing quality of life and support for the individual and/or family. This team is accountable for the assessment of physical, psychosocial, spiritual and bereavement needs of both the patient and the family, assuring that a palliative care plan is carried out across all care settings.
The medical discipline focused on the relief of suffering and the promotion of quality of life.
Patient-Family Focused Care
Interdisciplinary care that targets the patient and family as the unit of care, recognizing the impact of illness on the family as well as the patient.
Supportive counseling for the patient's belief and value system; support of the essence of the person and facilitation of spiritual growth and closure near the end of life.
Types of Therapies
Antiretroviral (ARV) therapy is designed to suppress viral replication. Highly active antiretroviral therapy (HAART) refers to a combination of three or more of these drugs that typically target the virus at multiple points in its replication cycle, providing potent and durable suppression of viral replication that permits immune recovery. Therapy in advanced disease also requires prophylaxis for opportunistic diseases that take advantage of the patient's weakened immune system, such as Pneumocystis Jiroveci pneumonia or Mycobacterium avium complex. These latter therapies might be continued until the time of death in order to prevent the development of opportunistic infections that will further impair the patient's quality of life.
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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.