End-of-life issues for American Indians: a commentary.

The American Indian population is growing according to the latest census; the members of over 500 nations that survived into the 20th century are thriving. This heterogeneous population has over 350 different languages and dialects. Some tribes base membership on degree of native ancestry, whreas others base it on the ability to trace native ancestry.1 Some tribes are matrilineal only. The population is young, but life expectancy is increasing. There is still less than the general population of persons over 60 years of age. Median income for the American Indian population remains low, and fewer individuals have health insurance. Their overall income is only about 30% of the general population. One half of the reservation Indians have incomes below the poverty level.2 More American Indians are living longer and dying of chronic diseases such as diabetes, heart disease, and cancer. The historical background of the treatment of American Indians by the federal government was reviewed by Rhoades and Deersmith3 who explained “Health services provided by the federal government for Indian people are not a gift. They are the result of business arrangements between two parties that resulted in a pre-paid health plan. The health plan was prepaid by cession of their entire lands (except for small parcels ‘reserved’ for Indians to live on and for other federal purposes) of the United States.” The Indian Health Service (IHS) was established as a commitment on the part of the US government to guarantee health care for American Indians in exchange for their lands ceded by treaties. Congress has never appropriated sufficient funds to cover the medical costs of Indian people, especially with such expensive diseases as cancer. In the last half of the 20th century, cancer has become the leading cause of death for Alaska Native women and the second leading cause of death for Alaska Native men. Cancer is the third leading cause of death for American Indians of all ages.4 The increase in cancer mortality means that end-of-life issues have become more important for the American Indian population. D’Angelo5 wrote in a monograph, “What kills Indian Elders,” that their chances of dying from cancer have increased 22% since 1982. Of the IHS service areas, the north central region has the highest cancer death rates.5 Kitzes,6 writing in the IHS Provider, said that “the endof-life experience for Native American elders mirrors that of the general population in that it is commonly extended, takes place away from family and the home, and is superceded by a technological, professional, and institutional process of treatment for the dying.” Klitzes6 stated that there is a “growing body of evidence that unrelieved pain carries with it great physiological and psychological risks including increased metabolic rate, blood clotting, water retention, impaired immune function, anxiety and depression, loss of hope and even risk of suicide ... many elders and their health care providers are fearful of the ‘myth’ of opioid addiction in the treatment of pain.” A hospice nurse of American Indian ancestry wrote in an article7 published in the Hospice Journal in 1995 that a person’s time leading up to death “should be a time of peace and understanding; a time to communicate ... to settle differences, to make peace with ourselves and others. Then we are prepared to take the next step through the ‘Big Open Door’ into the spirit world, to greet our Creator and all of our ancestors.” Death is accepted as a natural part of life, and a spirit world exists after death—a world inhabited by loved ones and ancestors.7 Terminal care in the last 50 years has concentrated on the palliative management of people for whom the advent of death is felt to be certain and not too far off and for whom medical effort has turned away from (active) therapy and become concentrated on the relief of symptoms and the emotional support of both the individual and his/her family. In 1979, I had the opportunity to visit St. Christopher’s Hospice 12 years after it had been opened by Dame Cicely Saunders in 1967. After 6 months of epistolary negotiations, she permitted me to visit her hospice for a day. I took the train from London to Sydenham and arrived at 9:00 AM. The session had just begun, and Dame Saunders was lecturing to the small group of visitors and her nurses. Dame Saunders said to the visitors