Whites use a hospice most
Far fewer Asian Americans, African Americans and Latinos than whites use hospice care for terminal illnesses, according to a study released Thursday on how end-of-life care in California differs by race and ethnicity.
And a disproportionate number of African Americans, Latinos and Native Americans die suddenly and unexpectedly of accidents or assaults, often in hospital emergency rooms that lack family support programs or bereavement counseling.
Still, most deaths across all races and ethnicities are caused by chronic diseases such as heart disease or cancer, according to Dr. Mark D. Smith, president and chief executive of the Healthcare Foundation, an Oakland-based philanthropy that commissioned the study.
“This is part of our effort to look at improving chronic disease care,” Smith said. “One way to do that is to improve the way people die. It’s something we don’t do well as a country.”
The report, co-written by Dr. LaVera Crawley, a Stanford University medical ethics researcher, and Marjorie Kagawa Singer, a professor at the UCLA School of Public Health and the Asian American Studies Center, analyzed 2004 death records from the California Department of Health Services, among other sources.
Whites made up 74% of hospice deaths; Latinos, 15%; African Americans, 6%; and Asian Americans, 4%.
A higher rate of accidental deaths and lower rates of health insurance don’t fully explain the huge difference among racial and ethnic groups in hospice use. Nor do language barriers that limit information and complicate access to hospice services.
Considered by many to be the gold standard for caring for people with terminal illnesses, a hospice is both a philosophy and a range of services that emphasize comfort over cure.
The hospice movement gained prominence in the United States in the 1980s and 1990s as patients and families grew tired of expensive, impersonal technologies that often meant dying in an intensive care unit, hooked up to machines. Hospice care, whether delivered at home or in hospitals, nursing homes or special hospice housing, aims to keep pain in check and help a dying person spend what time is left with family and friends.
But the study found that many minorities and immigrants don’t see it that way.
“The hospice movement comes out of a rejection of some of the modernity of medicine,” Smith said. “People who have been fighting for access to that healthcare system are likely to be suspicious that we’re just looking for a reason to not give them all these goodies they’ve been trying to get.”
Other cultural and individual preferences influence the decision to give up high-tech interventions and potentially life-saving technologies. Giving up such high-tech care is a requirement of Medicare if it is to pay for hospice services. Talking about death is uncomfortable to many and is taboo in some cultures. According to a study cited in the report, elderly Mexican Americans and Korean Americans in Los Angeles did not like the idea of advance directives, written instructions about treatment preferences in case of a coma or other inability to communicate. They believed that to put something in writing hastened death.
“Racial, Cultural and Ethnic Factors Affecting the Quality of End-of-Life Care in California” calls for reforming the Medicare Hospice Benefit to allow for more aggressive treatments along with palliative care.
The recommendation most likely to stir controversy is a call to extend public benefits to anyone needing end-of-life care.
Other recommendations include improving bereavement services in emergency rooms and adding courses on ethnic and cultural aspects of pain management to medical education to better treat minorities.
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