What Is Palliative Care?
Palliative care is care aimed at alleviating or easing illness, not necessarily curing it. The focus of palliative care is not on treating the disease but rather on relieving symptoms and side effects and providing comfort to the patient. It also involves mitigating the burden of illness on patients and their families. A 2000 HRSA publication1 described palliative care this way:
[It is] patient- and family-centered care. It optimizes quality of life by active anticipation, prevention, and treatment of suffering. It emphasizes use of an inter-disciplinary 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.
The definition distinguishes specific components of palliative care:
- Pain and symptom management
- The patient and the family (not just families of origin but families of choice as well) as the unit of care
- Care for psychological and spiritual issues and bereavement as well as for physical needs
- Emphasis on quality of life.
Palliative care complements curative medical care. It is not meant to replace curative care, but it does assume a greater role in patient care as the disease advances. The continuum of palliative care services begins in the early stages of the disease, but the need for and the types of services change as the disease progresses. Figure 2 illustrates those changes, from early diagnosis to bereavement care for remaining family members and loved ones.
Some patients enter the medical care system shortly after HIV diagnosis and have few needs for medical, social, or spiritual care. In such cases, palliative care will be relatively limited. As the disease advances, however, palliative care needs will increase. Specifically, palliative care will be required to relieve complex symptoms, address social or legal issues related to death and dying, and inform important clinical decisions about quality of life and family issues. Other patients enter the medical care system during the late stages of HIV disease, already experiencing significant and serious symptoms, including severe pain related to HIV or other medical conditions. In this case, palliative care may be necessary to relieve a wide range of symptoms before the patient can begin to effectively engage in HIV medical care and treatment. Many other examples of the role and application of palliative care have been documented in print matter and on Web sites produced by HRSA and other organizations.2,3
HAB has invested significant resources toward understanding palliative care of HIV-infected persons who receive care, support, and treatment through the CARE Act. HAB has underscored the relevance of palliative care services in addressing the complex needs of HIV-infected persons and the importance of maintaining such services in the changing treatment environment. An essential companion document to this resource guide is the 2003 HAB publication A Clinical Guide to Supportive & Palliative Care for HIV/AIDS (http:// hab.hrsa.gov/tools/palliative/), which provides specific management and treatment guidelines and recommendations for addressing clinical, psychosocial, cultural, spiritual, and ethical issues related to palliative care.
Figure 2. Palliative Care Continuum
Source: Adapted from materials from the Center for Palliative Care Education, University of Washington.
What, then, can CARE Act providers do to enhance, integrate, and revive palliative care within the array of services they offer? Quite a bit. Here’s how.
