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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 2: Overview of Clinical Issuespoverty, and racial-ethnic minority populations in the United States further compounds thevulnerability of many patients living with HIV/AIDS. Despite some advances in public educationand awareness about AIDS, there remains a significant degree of stigma, fear, and prejudiceregarding 26 AIDS picas within the society as a whole.In addition to all of the challenges that AIDS has always posed, there are new issues that havearisen in the HAART era that are particularly relevant to palliative and end-of-life care. With thelong awaited impact of HAART—beginning most notably in 1996—and the subsequent rapiddecline in death rates from AIDS, the inevitability of short-term mortality has receded. Thisphenomenon has even resulted in the identification of new potential stressors due to a “ ‘secondlife’ agenda” in patients who must now prepare to go on living instead of preparing to die. 57While the decreased risk of death has clearly been a welcome relief for patients and theircaregivers, it also has had the tendency in some cases to isolate those who are still dying withAIDS in the HAART era, at a time when people’s expectations have been so dramatically liftedby the promise of effective antiretroviral therapy. 17 As noted above, while death rates have decreasedand the rate of decline has slowed, there are still over 15,000 people per year dying fromAIDS in the United States, with the prospect that this number might continue to increase whenthe compounding co-morbidities of hepatitis B and C, substance abuse and its sequelae, cooccurringcancers, and other potentially fatal conditions are taken into account.In the HAART era, the formerly grim scenario of AIDS as a uniformly and rapidly fatal disease isno longer the usual outcome—dying from AIDS has now passed from ‘fate’ to ‘tragedy.’ Althoughin the pre-HAART era death came swiftly to AIDS patients, the new drug therapies are nowcapable of extending life for many years—at least in some patients. Unfortunately, the patientswho do not benefit from the new drugs may be blamed for their ‘failure’ to respond to treatmentor to adhere to the treatment regimen. These dying patients are sometimes ostracized and seenas the ‘anomalies’ who are not able to benefit from the purported lifesaving effects of effectiveantiretroviral therapy. A new form of guilt may be seen in both patients and care providers,faulting poor therapy choices or poor adherence as the ‘cause’ of a patient’s death. With theadvent of HAART, there are both greater possibilities for therapeutic success and greateropportunities for therapeutic failure, regret, and guilt over perceived bad decisions or missedopportunities.Given the importance of adherence to HAART as a major factor in determining the likely successof a treatment regimen, it is not surprising that so much of the routine patient-providerclinical interaction has become focused on adherence to therapy and the close monitoring oflaboratory tests such as CD4+ counts and HIV viral load assays. However, this focus on adherencehas tended to reframe the patient-provider relationship in a new and more limited way,outside of the context of the experience of life-threatening illness and preparation for possibledeath. As with much of medicine in general, the more narrowly one operates within a biomedicalmodel, the less comfortable one tends to be with end-of-life issues, since death in effectrepresents a ‘failure to cure.’ Consciously or not, HIV care providers in the current era may feelinadequate to help patients deal with impending death, since their role is understood as one ofcuring or fighting back the disease. Tragically, providers may feel so out of place that they maywithdraw emotionally from patients and become less involved in their care as they approachdeath, so that patients experience both the losses imposed by the illness and the potential lossof a trusted long-term relationship with their care provider.IIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 27