Field of Work: End-of-Life Care

Problem Synopsis: During the 1980s and 1990s, Americans began to be concerned about the long period of suffering many people endured before their deaths. Palliative care programs generally address the physical, psychosocial and spiritual needs and expectations of patients with life-threatening illnesses at any time during that illness.

Bristol Bay covers 47,000 square miles in southwest Alaska and is home to 7,500 people. Many Bristol Bay area villages can be reached only by small aircraft, but weather conditions are often dangerous for flying.

Doctors in Dillingham (the only town in Bristol Bay, with a population of 2,400) or Anchorage visit villages only four or five times per year. When people became terminally ill, they had often been flown to Anchorage, more than 300 miles away. If family members could not afford to accompany them, they were likely to die alone.

Synopsis of the Work: From October 1998 to May 2002, with $449,513 from RWJF's Promoting Excellence in End-of-Life Care national program, staff at the Bristol Bay Area Health Corporation created Ikayurtem Unatai (Helping Hands), a palliative care program for Native Alaskans living in the 34 villages that comprise Bristol Bay. The national program aimed to identify, promote and institutionalize care practices that allow seriously ill people and their families to approach the end of life in physical, psychological, spiritual and emotional comfort.

Key Results: Project staff published the following results:

• More elders than anticipated asked to enroll in Helping Hands because they understood it could help them remain in their communities.
• In 1998, about half of those who died in their Bristol Bay area villages had do-not-resuscitate orders in place. By 2001, about 75 percent of people had signed these orders.
• In 1999, before Helping Hands began, 33 percent of patients with cancer, chronic obstructive pulmonary disease, congestive heart failure or renal failure died at home. In 2000 and 2001, 77 percent of people with those diseases died at home.

At the end of the RWJF grant, the Bristol Bay Area Health Corporation was able to sustain a skeletal program in Bristol Bay. The Alaska Native Tribal Health Consortium was awarded a five-year $1.5-million grant from the National Cancer Institute to establish a statewide palliative care training program for health care providers of native Alaskans.