Half of HIV-Positive Patients Fail to Discuss ‘End-of-Life’ Decisions With Their Physician

Half of HIV-positive patients discuss end-of-life issues with their physicians, with many leaving such decisions in the hands of family members or others who may not fully understand the patient's diagnosis or preference for end-of-life care, according to a study published in this week's Journal of the American Medical Association. A cross-sectional study of 2,864 HIV-positive patients found that the patient-physician relationship plays a "large role" in facilitating end-of-life discussions, as patients with "longer" physician relationships were more likely to report discussion of such issues. In addition, race and ethnicity "remained a strong predictor" of the likelihood of engaging in end-of-life discussions, with blacks and Latinos less likely to participate in such discussions. Those who contracted HIV through intravenous drug use also were less likely to engage in end-of-life discussions, while women and patients with children "in their household" were more likely to talk to their doctors about such issues. Although previous studies highlighted "difficulties in decision making" for HIV patients, including not choosing a "surrogate decision maker" and making decisions based on "inadequate information," the report notes that "few researchers have investigated whether communication about preferences and decision making has progressed with evolution of therapeutic options." Significant progress in treatment of AIDS patients has led to "increased optimism," which may "make it easier" for patients to "avoid planning for future clinical deterioration and death." However, as HIV moves more toward being a "chronic disease," patients and physicians should strive to discuss "care goals over an extended period of time," Dr. Neil Wenger and colleagues from the University of California-Los Angeles write. Discussing these topics with "marginalized groups that make up an increasing proportion" of HIV-positive patients and "who are least likely to have engaged in advance care planning" is "particularly important," they conclude.

End-of-Life Care Preferences Vary
Respondents had "widely divergent" opinions when asked if they would prefer "life-extending care or care focused on comfort" at the end of life. Thirty percent said they would "definitely desire to extend life" and 14% said they would "probably" choose to extend life, "even if it meant having more discomfort," while 32% said they would "definitely" elect to relieve pain and 23% said they would choose to relieve pain at the expense of longevity. In addition, 91% of respondents agreed they would not want to be kept alive in a comatose state. This "generally low willingness to tolerate adverse health states may lead some to suggest that comfort care, rather than prolongation of survival, should be the default clinical course in such circumstances," the researchers write. However, they note that "fully 17% of patients indicated that they would be willing to live permanently in at least three of these health states," desires that were "negatively associated" with patient-physician discussion about end-of-life issues. "Thus, a default posture not to provide aggressive care in these clinical situations would override the preferences of many of the patients least likely to communicate their wishes," the authors write, adding that the "alternative" is for physicians to "prospectively" engage in conversation with all patients, especially those "who are at risk of poor communication" (Wenger et al., JAMA, 6/13).