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

Chapter 21.26 picas Patient-Clinician CommunicationJ Randall Curtis, MD, MPHWHY PATIENT-CLINICIAN COMMUNICATIONABOUT PALLIATIVE CARE IS IMPORTANT IN HIV DISEASE■ Patients with chronic and terminal diseases like AIDS, cancer, and end-stage lung and heartdisease frequently do not talk with their clinicians about the kind of care they want at the end oftheir lives. 1-4 Randomized controlled trials of interventions to improve patient-cliniciancommunication about end-of-life care have included use of advance directives, 5 educationalinterventions with patients and/or physicians, 6, 7 and the provision of prognostic information topatients and physicians, 6 but have not been successful in improving communication about endof-lifecare. The reasons these trials have been unable to improve communication are not entirelyclear, but part of the reason is likely the complexity and difficulty of communicating aboutpalliative care and particularly about dying and death.Advances in the treatment of HIV infection have been dramatic and unprecedented with markedimprovements in survival and quality of life. 8, 9 The new antiretroviral regimens, however, arenot successful for all patients; many patients find themselves facing a death from AIDS at thesame time that many others are having favorable responses to antiretroviral therapy. Patientsand clinicians have described death from AIDS as changing from fate during the early era ofAIDS to tragedy during the era of highly active antiretroviral therapy. 10 In this way, caring for thepatient dying of AIDS has become more similar to caring for patients dying of other chronicdiseases and some clinicians report that these changes have made it harder to talk with patientsabout dying and end-of-life care. 10Similar to the data on patients with other chronic diseases, most patients with AIDS have notdiscussed with their primary care clinicians the kind of care they want at the end-of-life. In asurvey completed in 1985 of patients with HIV infection, although 73% wanted to discuss lifesustainingtreatment with their physicians, only one-third of patients reported having had sucha discussion. 11 In a study of 1031 persons with AIDS published in 1990, 68% knew of advancedirectives, but only 11% had talked with their provider about advance directives. 12 More recently,in a U.S. probability sample of 2864 patients representing 231,400 adults receiving care for HIV,50% of patients reported having some discussion about end-of-life care with their provider and36% of patients reported having an advance directive. 1 Although these proportions may beincreasing over time, still at least half of patients with HIV infection or AIDS have not discussedend-of-life care with their primary care provider and two-thirds have not completed advancedirectives. Furthermore, many of these studies document important differences in the proportionof patients who discuss end-of-life care with their primary care clinicians according to HIV riskfactor, race, and ethnicity. Gay men are more likely to have been counseled about and executeda prior directive than injection drug users 1, 12 and whites are more likely to have discussed endof-lifecare than blacks and Hispanics. 1, 2 Furthermore, even when clinicians communicate aboutend-of-life care, injection drug users report lower quality of communication about end-of-lifecare than gay or bisexual men. 13 Therefore, many patients with HIV infection, particularlyXXIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 431