The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 14: Culture and Carein part due to lower referral rates for African Americans for potentially curative surgical proceduresas compared to Caucasian38, 39Americans.26 picasSome authors have suggested that these differences are due to discriminatory practices thathave led African Americans not to trust Caucasians or their social institutions. 40 The 40-year-oldTuskegee Syphilis Study, in which the U.S. Public Health Service lied to and denied standardtreatment to 400 poor African American sharecroppers, is a reminder of why African Americansfeel they cannot trust the health care system. In fact, one recent study of 520 African Americanmales sampled door-to-door showed that 27% believed that HIV/AIDS was a government conspiracyagainst black people. 41Discriminatory practices also extend to pain management. In studies in various medical settings,such as emergency rooms 42, 43 and cancer centers, 44, 45 pain severity was more likely to beunderestimated and effective analgesia less likely to be prescribed for African Americansand Hispanics than for Caucasian Americans. These and other studies clearly document a racialbias on the part of medical care providers. Thus the distrust demonstrated by African Americansis warranted, as subtle discrimination continues. 46 In addition, the studies document thatthe medical care received by minorities is less than optimal, which has led to AfricanAmerican distrust of health care institutions and has affected how African Americans viewend of life care.Communication of Treatment PreferencesThe same distrust appears to have inhibited many African Americans from effectively communicatingend of life decisions. In a study of communication of treatment preferences among 1,031AIDS patients, researchers found that Caucasian patients were twice as likely as African Americanpatients to have discussed their treatment preferences with their physicians. Perhaps notcoincidentally, the study also found that African Americans were half as likely as Caucasians toprefer a treatment approach that focused on pain relief as opposed to extending life. 47 Suspicionabout proposed palliative treatments may deter African American patients from honest, opencommunication with health care providers. Without adequate communication, the patient andfamily inadvertently give the decisionmaking power to the health care provider, which becomesa form of “paternalism by permission” 48 and decreases patient autonomy.XIVAdvance DirectivesA retrospective chart review of 1,193 frail elderly in South Carolina found that African Americanswere less likely than Caucasians or Hispanics to have completed advance directives, 49 whilein another study African Americans were less likely than Caucasians or Asians to completedurable power of attorney for health care. 50 While reasons for this are several, lack of access tomedical care in general is of primary importance. If an advance directive to withhold life-prolongingtherapies is seen by African Americans as yet another way of limiting their access toadequate health care, then they might be more inclined not to complete one. 51Along with the decreased use of advance directives among African Americans is a low use ofhospice services when compared to Caucasians. This is partially due to lack of access to and lackof education regarding hospice care. 52U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 309