Clinical Guide to Supportive & Palliative Care for HIV/AIDS

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.