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measured in weeks or months. Hospice recognizes death as the final stage of a life journey, and
enables patients and families to live their final days to the fullest in the comfort of home,
surrounded by loved ones.
Hospice care is primarily provided in the home by a team of specially trained
professionals, volunteers and family members, who address all symptoms of a disease. A family
member typically serves as the primary caregiver and helps make decisions for the terminally ill
patient (NHF, 2002b). Though approximately two-thirds of hospice patients are over the age of
65 (HFA, 2002b), both children and adults can receive the support of hospice during the final
stages of life.
The majority of hospice patients have cancer, while others suffer from AIDS, Lou
Gehrig’s disease, heart or lung disease, and other fatal conditions (Web, 2002). Services
available through hospice include: medical and nursing care; personal care; homemaker services;
social work services; grief and counseling services; volunteer assistance; spiritual care; case
management; and family training in patient care (Web, 2002).
Today there are more than 3,100 hospice programs in the United States, caring for nearly
700,000 people each year (NHPCO, 2001). For rural populations, however, hospice expertise
may not exist locally (Buehler & Lee, 1992).
Buckingham, (1996) reports that hospice is more
difficult to access in rural areas. Travel expenses and road conditions pose additional barriers.
Because of these obstacles, many rural residents are forced to use inpatient or long-term care
facilities for hospice services instead of having the choice of dying at home.
The Burden of Caregiving
Hospice caregivers deal with a wide range of stresses every day, both physical and
emotional. Not only are hospice caregivers dealing with their own emotional adjustment to the
Convention