Blacks are almost twice as likely than others to choose aggressive end of life treatments and decline do-not-resuscitate orders, according to a recent study by the American Journal of Critical Care. A history of religion, socioeconomic strife and distrust of the medical establishment have led many blacks to suffer cold, in-hospital deaths.
An essay by palliative care expert Dr. Joseph Sacco of Bronx-Lebanon Hospital Center provides similar analysis. Sacco writes for The New York Times: “Blacks are much more likely than whites to elect aggressive care and to decline do-not-resuscitate orders. DNR election of even 30 percent is rare in any black community, and hospice enrollment is likewise low.” The Journal’s study is used in his article.
Only 7.5% of hospice patients are black, less than half of their population representation in the United States, The Washington Post’s Rob Stein writes in a 2007 article. “As a result, they are more likely to experience more medicalized deaths, dying more frequently in the hospital, in pain, on ventilators and with feeding tubes.”
The reasons why blacks more often choose aggressive treatments are complex. According to Etienne Phipps of the Center for Urban Health Policy and Research, “Race is just a surrogate for economic, educational and access differences.”
People come to me and say, ‘My mother says if I go to hospice, they are just going to try to kill her.’
Sometimes the children of terminally ill patients spend months fighting with insurance and hospitals for treatment for their parents. Once treatment begins, it can seem like giving up to elect hospice or palliative care.
Stein quotes Betty Ferrell, a nurse and researcher for the City of Hope National Medical Center outside Los Angeles. “You may have a daughter who spent months fighting the system to get a mammogram for her mother. She’s finally diagnosed with advanced breast cancer. Now they say there’s nothing more that can be done. You can see how her reaction may be, ‘Oh, they’re just trying to avoid caring for my mother one more time.’ ”
Religious beliefs also play a role in why blacks opt for more rigorous end of life treatment. Sacco also notes: “African-Americans have reasons to prefer aggressive medical management. A tradition of shared decision-making in extended black families and high rates of Christian religious affiliation appear to favor it.”
Stein also hints at the role of the community church in end of life decisions. “We’re taught that we take care of our loved ones no matter what,” says Cassandra Cotton, a black Las Vegas hospice worker in Stein’s article. “If I was not to take care of my mother, I would be embarrassed in front of my church and my community.”
CBS News analyzed a 2009 study, published by The Journal of the American Medical Association. The study relied on 345 patients with advanced cancer between 2003-2007.
“Of the patients who reported a high level of religious coping, 11% had mechanical ventilation during their last week of life and 7.4% underwent cardiopulmonary resuscitation (CPR), compared to 3.6% and 1.8%, respectively, of patients who reported a low level of religious coping,” writes Salynn Boyles.
Stein quotes the Rev. Paulette M.E. Stevens of the Montgomery Hospice in Rockville who continues to hear about blacks’ skepticism of medical providers. “People come to me and say, ‘My mother says if I go to hospice, they are just going to try to kill her.’ ”
To help blacks have more compassionate and comfortable end of life care, Sacco advocates communication. He has published a study in The American Journal of Hospice and Palliative Medicine on how effective clear communication can be. “Sixty-five percent of black patients who were given palliative care consultation elected DNR, and 32 percent chose hospice — rates significantly higher than those previously demonstrated.”
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