Addressing Palliative Care Within CARE Act Planning
To provide access to palliative care services through the CARE Act, planning bodies must recognize the relevance of palliative care services, understand the organizational and operational characteristics of such an approach or system, and devote some funding to support such services. With the advent of new drug therapies, planning bodies have understandably shifted funds (and services) away from home- and community-based services for persons with advanced and often fatal HIV/AIDS1 to services that provide direct, immediate access to new therapies and support.2
At the very least, there needs to be a discussion about palliative care. It might be most productive to do so under the rubric of supporting a broader care framework, such as the “chronic care” model. Under this approach, planning bodies and providers have more flexibility in determining the types of services (new and existing) that will fit the needs of a particular community and its members—who might have a wide range of medical needs, both curative and palliative. Planning groups can rely on established standards or guidelines of care for the delivery of services for PLWH/A at various stages of disease progression, behavioral care services needs, and others to guide this discussion. Palliative and hospice care guidelines and standards are listed below.
Planning bodies also can examine information on people who are currently in need of palliative care services (whether or not they are receiving such services) and information on persons who have died. Sources can include specific survey instruments or other information-gathering techniques:
- Patient and staff surveys related to pain and comfort control, advanced care planning, patient and family satisfaction, and other care or treatment issues
- Community needs assessments for specific types of palliative care services and providers
- Reviews of medical records and death certificates to assess sites and causes of death, conditions related to death, pre- and postmorbid use of palliative and hospice or social support services, and other pertinent information.
Several researchers have developed and tested survey instruments specific to palliative care service needs. They span a range of service categories and can be applied in various settings and circumstances. Such instruments can be useful to grant recipients in assessing unmet needs related to palliative care services among CARE Act programs.
It is important for planning bodies to have access to palliative care experts and informational materials. A training program, in particular, for Planning Council members and local providers can be beneficial. The training module developed by the University of Washington is one resource.
Additional Resources
- To learn more about developing chronic care programs, refer to “Improving Chronic Illness Care” (www.improvingchroniccare.org/change/model/components.html). The Web site details the components of a chronic care model, including community supports, health systems, self-management support, clinical information systems, and others.
- Various national organizations and HAB have developed guidelines related to providing palliative and hospice services: National Hospice and Palliative Care Association (www.nhpco.org), Americans for Better Care of the Dying (www.abcd-caring.org), Project Death in America (www.soros.org/death/), the Hospice Foundation of America (www.hospicefoundation.org), and the American Academy of Hospice and Palliative Care Medicine (www.aahpm.org).
- The Center to Advance Palliative Care (www.capc.org) offers information on how to conduct a needs assessment and general guidance for assessing community needs for palliative care services.
- “Needs Assessment for Palliative Care: Three Projects Compared”4 is a journal article on needs assessments.
- The HRSA Web site provides a comprehensive list of evaluation forms for clients and staff related to palliative care services (www.hab.hrsa.gov/tools/topics/evalforms.htm), including a Palliative Care Outcome Scale, Missoula-Vitas, the Memorial Symptom Assessment Scale, Service Needs and Utilization, the Rapid Disability Rating Scale, and others.
- Promoting Excellence in End-of-Life Care is a project of the Robert Wood Johnson Foundation (www.promotingexcellence.org) that provides more than 50 instruments for evaluating organizations, educational programs, community needs, patient preferences and satisfaction, and provider skills. The Web site also provides links to HIV-specific sites.
1This type of system and models of community-based care that evolved earlier were closely analogous to end-of-life palliative
care programs.
2 The newer model of care is highly curative in focus and increases funding to social support services necessary to ensure access
to and effective use of the interventions.
