The Health Resources and Services Administration (HRSA) of the
United States Department of Health and Human Services has as its
mission the improvement of access to health care and services for
underserved and vulnerable populations. HRSA accomplishes this
mission by partnering with community-based organizations in the
delivery of health and social services, with academic health
centers in the education of health professionals, and with State
and local health departments in the areas of prevention, public
health promotion and health care delivery. Improved quality of care
and quality of life are the goals of the programs and initiatives
of HRSA. To that end HRSA's HIV/AIDS Bureau has embarked on the
publication of A Clinical Guide to Supportive and Palliative Care
for HIV/AIDS. Through the work of visionaries in the fields of
HIV/AIDS and palliative care, we conclude that excellent HIV care
can be provided by integrating the principles and framework of
palliative care into the delivery of care and services to people
living with HIV/AIDS, throughout the continuum of illness. This
integration of services holds the promise of patient and
family-centered care that is proactive in addressing the multitude
of issues with which patients are challenged. With this volume we
seek to expand the definition of palliative care and to realize
palliative care's full potential to improve the quality of care and
the quality of life of those living with HIV/AIDS. The HIV/AIDS
Bureau, through its Working Group on Palliative Care in HIV, has
set forth the following working definition: Palliative care is
patient- and family-centered care. It optimizes quality of life by
active anticipation, prevention, and treatment of suffering. It
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 addresses
physical, intellectual, emotional, social, and spiritual needs. It
facilitates patient autonomy, access to information, and choice.
Palliative care is complementary care, not alternative care, and
therefore should not be provided only when disease-directed therapy
fails or is unavailable. It is a mistake to adopt a palliative
perspective and approach only at the last stages of illness. One
need only reflect on the pain associated with receiving a first HIV
diagnosis or upon the psychological and spiritual suffering that
are the substrates of substance abuse and other behaviors exposing
individuals to HIV, to realize the importance of using palliative
care principles at all points along the course of this illness.
Providers should focus their attention on comfort, relief of
suffering, and quality of life throughout the course of HIV
disease. The central role of medication adherence is not to be
underestimated in stabilizing the course of disease, but other
factors can be equally important in optimizing clinical outcomes.
These factors include a wide range of hard-to-control socioeconomic
as well as personal characteristics: an understanding of the
disease process; empowerment in relation to personal health; a safe
place to live; freedom from pain and distressing symptoms; adequate
nutrition; treatment for substance abuse, depression and other
mental illness; hope; adequate help of friends, family and other
caregivers, especially when functional status is diminished and
disease progression is ongoing. These challenges can be met
successfully by using a palliative care framework to approach the
patient, providers, caregivers, family, loved ones, and the health
care system. This manual is organized to address the many aspects
of palliative care that are key in caring for the person living
with HIV and AIDS. A wealth of expertise and experience in the
areas of HIV and palliative care has provided a unique document
that expands the realms of both disciplines.
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