Keeping Hope Alive—Cultural Differences in End-of-Life Decision-Making
If Berry had chosen to stay alive at all costs using heroic measures such as mechanical ventilators and feeding tubes, these aggressive treatments wouldn’t cure the disease, just give her a little more time. Even though there’s little chance of full recovery, African Americans are more likely than whites to choose life-sustaining measures. Minorities at the end of life are more likely to receive high-intensity, life-sustaining treatments. Dr. Zitter refers to a 2013 survey done by the Pew Center survey, which found “African Americans do tend to die more often on machinery in facilities, away from home in pain than white patients.”
Keeping hope alive is a strong part of African-American culture and surviving difficult times. Hospital TV dramas like ER and Grey’s Anatomy serve to reinforce the belief that medicine can cure most problems, even terminal illness.
“If you watch TV as most people do, you think ‘hey yeah, if this happens to most people, bring me back. Restart my heart, go for it, ’cause it happens all the time on TV.’ ” says Dr. Alexander Smith. “Nobody wants the CPR, the chest compressions, the shocks, the breathing tubes. They want to like get back to their former selves, to go home. Not to live in the ICU on machines for a few days before dying.”
A Long History of Unequal Treatment in Medical Services
Doing everything to stay alive is part of African-American culture that can be traced back to the days of slavery. The country’s long history of racism and poverty included unequal access to medical care. To this day, some suspect that the health care system is limiting their treatment options. Others worry that choosing hospice means giving up hope or hastening death. Reverend Cynthia Carter Perrilliat, a minister at the Allen Temple Baptist Church in East Oakland, often encounters this fear among her congregants, who she says ask “Why should I trust that you’re going to do the right thing for me?”
“Statistics will tell you that in communities of color, particularly African-American communities, they always say ‘give me everything,’ ” says Perrilliat. “You know, all the treatment that there is, because typically we don’t get the treatment we need.”
Historic wrongs such as the Tuskegee syphilis experiments of the 1930’s have only served to reinforce African-American mistrust of the medical system. “The U.S. government had ultimately a cure for syphilis but they did not provide that cure to these African-American men,” said Perrilliat, “Unfortunately most of them died. It was a senseless death. It did not have to happen and frankly the powers that be, the government, did nothing about it.”
Established racial disparities and discrimination have long been part of America’s health care system from birth to death. Infant mortality rates are twice as high for African Americans compared to whites. White Americans live 3.5 years longer than African Americans. Research further indicates that U.S. racial and ethnic minorities are less likely to receive even routine medical procedures and experience a lower quality of health services. Even at the end of life, racial disparities persist. Significantly fewer African Americans, Asians, and Latinos enrolled in hospice compared to whites.
Painful Consequences of Avoiding Hospice Care
But without the comfort care provided by hospice, African Americans at the end of life have less access to pain medication, especially if they live in low-income neighborhoods. “If they’re under the care of hospice, hospice will bring the medication to that neighborhood,” said Dr. Zitter, “But if you actually have to go and refill that prescription, it can be a real problem for people who don’t have a car and who can’t figure out how to get to a pharmacy somewhere else.” Nearby pharmacies in some predominantly minority neighborhoods are less likely to stock adequate supplies of opioids.
For dying patients who opt for aggressive, life-prolonging treatments, palliative care1 is available to alleviate some of the physical pain. But Zitter says these heroic measures can immobilize frail patients, thus increasing their discomfort and suffering in their final days of life. “If I sit and think what that must feel like to be a dying person, unable to communicate on my back in an ICU or a ventilator facility with tubes surgically attached to my body with my arms tied down—to me, that’s a fate I would never personally want,” said Zitter.