November 30, 1999
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.1
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.
Palliative care in HIV must be able to adapt to the fluctuating yet ultimately downward 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.
Part I: Introduction Provides our vision for the 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 constitutional symptoms that cause much of the burden to patients in more advanced states of HIV disease. Special issues in the care of children and adolescents are covered in a chapter in this section. Psychiatric and substance use concerns are covered in this section as well.
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. It is our sincere hope that you and your colleagues will find this guide useful as you integrate the principles and framework of palliative care into the practice of high quality HIV care.