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Home Care and Hospice Notes
By Coral Andrews, Vice PresidentSince this edition of the HAH newsletter is a combined summary for Nov. and Dec., I've decided to focus my column on hospice and palliative care. Each month has been selected to remember two connecting themes: Nov. is National Home Care and Hospice Month and Dec. 1 is the day set aside as World AIDS Day.
The National Association of Home Care and Hospice has identified this year's hospice theme as "Completing the Circle of Life with Love and Dignity." As we reflect on this theme, we can envision what the World Health Organization had in mind when it established World AIDS Day in 1988. It serves to focus global attention on the devastating impact of the HIV/AIDS epidemic.
Observance of this day provides an opportunity for governments, national AIDS programs, churches, community organizations and individuals to demonstrate the importance of the fight against HIV/AIDS.
Americans should be reminded that HIV/AIDS does not discriminate. With an estimated 1,039,000 to 1,185,000 HIV-positive individuals living in the U.S., and approximately 40,000 new infections occurring every year, the U.S., like other nations around the world, is deeply affected by HIV/AIDS.
In the U.S. and abroad, the growing need for palliative care services is apparent as we respond to the needs of the aged population and those with HIV/AIDS. Palliative care, while similar to hospice care, is not limited to those facing a terminal illness (as is the case for hospice care) and can be provided to those suffering from chronic diseases that cannot be cured. It is described as care primarily directed toward symptom management and improving the quality of life for the patient and family and is best provided by a team of professionals, usually including a physician, nurse, social worker and spiritual counselor.
Medicare hospice participation has grown at a dramatic rate, largely as a result of a 1989 Congressional mandate to increase reimbursement rates by 20%. The number of hospices participating in Medicare increased from 31 in 1984 to 2,670 in 2004. Here in Hawaii, hospice services are delivered in the community and in institutional settings.
Hospice services are covered under Medicare and are offered as an option in most states under their Medicaid programs. Hospices continue to rely heavily on grants and community support to fund un-reimbursed care and hospice services for patients with little or no insurance.
One example of the global expanse of palliative care is evidenced by the efforts of the Foundation for Hospices in Sub-Saharan Africa, which released A Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa. Written for healthcare workers in sub-Saharan Africa, a PDF of the Guide can be found at the HFSSA Web site at www.fhssa.org.
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS in Sub-Saharan Africa addresses the many aspects of palliative care that are essential in caring for the person living with HIV/AIDS and is sensitive to the cultural themes of that region. It not only covers medical treatment, symptom management, and psychosocial/spiritual care, but also traditional care and the social issues that are part of the HIV pandemic in Africa, such as poverty alleviation, food security, and planning care for orphans and vulnerable children.
I encourage you all to take a look at the table of contents. There are chapters devoted to topics such as "The Role of Government," "Community Support," and "The Use of Art in caring for Children." Incorporating cultural sensitivity into the delivery of palliative care services will invite those in need as well as their families to be more encouraged to participate.
World AIDS Day provides a global opportunity to educate others and increase awareness. As we work collectively to support the humanitarian need for palliative care abroad, let us also remember that we need to do our part to support our hospice and palliative care providers here in Hawaii as they, too, work to respond to the humanitarian need for palliative care in our state.