The following definitions were developed by the Workgroup on Palliative and End-of-Life Care in HIV/AIDS to assist readers of this report.
Caregiver
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.
Culture
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.
Disease Management
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.
Disease-Specific 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.
Family
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.
Palliative Medicine
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.
Spiritual Counseling
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 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.