Due to unprecedented advances in medicine, Americans are living longer — but we’re not necessarily living better. Currently, 45 percent of Americans have at least one chronic illness and 70 percent will eventually die from one. Heart disease, cancer or stroke in particular will claim 1 in 2 lives.
By 2030, 69 million Americans will be seniors, a number more than double what it was in 2000. While this growing wave of older adults has been called the “silver tsunami,” most Americans don’t know that it is actually “silver-brown.” The United States is poised to become a majority-minority nation by 2044, and the population of minority seniors is growing exponentially in turn. The silver-brown tsunami includes rapidly aging seniors from ethnic and racial minority groups, aging baby boomers and Gen-X Americans as well as immigrants who joined the U.S. workforce a few decades ago.
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Health disparities that plague ethnic minorities throughout their youth and middle age doggedly pursue them through the end of life. Minorities are less likely to enroll in, more likely to revoke and less likely to report satisfaction with hospice care. They are also more likely to be subjected to burdensome treatments at the end of life that do not necessarily increase lifespan or quality of life but instead prolong the dying process. Though a third of total Medicare spending is on care in the last two years of life, higher spending has not been associated with better health outcomes. A recent global report by the Economist Intelligence Unit evaluating end-of-life care ranked the U.S. as ninth out of 80 countries.
Most patients never have an opportunity to have end-of-life conversations with their doctors. Most doctors are not trained to discuss end-of-life issues, and it becomes exponentially more difficult when they find themselves needing to discuss such a sensitive topic with a patient across the cultural divide. At times, patients of particular minority groups will hold religio-spiritual beliefs that are difficult to navigate. Some believe that end-of-life issues are in the hands of God and that humans have no business tampering with them. Many believe in miracles. Some families feel that prolonging the dying process will give the patient time to redeem themselves through suffering.
There is also the issue of mistrust. Many minority patients and families have felt prejudice for most of their lives and may have a heightened sensitivity to perceived unequal treatment. In one of our recent programs on advance care planning, an African American patient said that she and her family did not feel comfortable signing any document that contained the phrase “withhold treatment” even though all advance directives include these words. “Our family has not forgotten Tuskegee yet,” she said. “We are in no hurry to sign away our lives.” When faced with racially charged issues, doctors avoid discussing end-of-life issues for the fear of committing a cultural faux pas.
To improve end-of-life care in the United States, especially among minorities, much work will need to be done to build trusting relationships, ones in which patients feel comfortable in engaging in end-of-life conversations. Based on recommendations from multi-ethnic patients and families, Stanford launched the Letter Project, a grass-roots campaign to empower multi-ethnic patients to initiate end-of-life conversations with their doctors.
We’re working with 13 different ethnic groups and training students and community leaders in end-of-life care in order for them to serve as cultural ambassadors and facilitate good care for the groups they represent. We recently trained a group of underserved Hispanic high school students from the Leadership Public School San Jose to bring important messages about end-of-life care to their families and communities. Students came to Stanford for boot camp on aging and end-of-life issues and learned to help seniors in their communities document their end-of-life wishes.
Most importantly, we need to train all doctors to provide culturally sensitive care. Many years ago cultural competence was a fashionable add-on to medical curriculums, but now it is a necessity. Whether our end-of-life standards sink or rise in the approaching silver-brown tsunami will be entirely dependent upon our nation’s ability to recognize the demographic imperative and do the needful to prepare for the inevitable.
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