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 Issuespatient and family process and act on information on many levels at once. It is not an accidentthat the philosophy and practice of hospice care explicitly incorporate an interdisciplinary teamapproach in the routine care of dying patients, and this framework should be no less essentialfor the comprehensive 26 picas care of patients with HIV.IIPROGNOSTIC UNCERTAINTY AND PALLIATIVE CARE■ Even as we have been emphasizing the importance of focusing on the goals of care in informingtreatment decisions, it must be recognized that prognostication and the expectation of likelyoutcomes in the course of HIV disease are much less certain and uniform than they were in thepre-HAART era. Ironically, it is precisely as we are reminded of the importance of clarifying thegoals of care—now that there are choices, we need to ensure that decisionmaking incorporatesthese choices—that we are also reminded that prognosis and the ‘natural history’ of HIV infectionare much less clear-cut than they were previously. While CD4+ counts and viral load assaysare excellent measures of response to therapy and indeed of prognosis in general, the possibilityof effective antiretroviral therapy—or alternatively the lack of this possibility when there are noviable treatment options—can completely alter prognosis for people with AIDS.The National Hospice Organization’s 1996 Guidelines for determining prognosis in certain noncancerdiagnoses attempted to generate criteria indicative of likely less-than-six months’ prognosisfor patients with AIDS (see Table 2-5). 54 While some of these clinical conditions may beuseful prognostic markers, none of them would likely override the potential positive impact ofeffective antiretroviral therapy if this were still an option. Indeed, some patients have beenreferred to hospice, received palliative care, and expected to die, only to surprise themselvesand their care providers with their miraculous recoveries (the ‘Lazarus Syndrome’) from effectiveHAART. In these cases, forcing patients to choose an ‘either-or’ approach would clearly beunconscionable. We must both be able to prognosticate as best we can based on evidence andthe patient’s specific treatment history and options, and be prepared to accept that our bestestimates may be made irrelevant by the potential impact of therapy. This reality only makes theintegration of palliative and curative approaches both more challenging and more necessarythan ever before.One issue that frequently arises related to the complexities of prognostication and clinicaldecisionmaking in the HAART era involves the discontinuation of antiretroviral therapy in apatient who is either not responding or felt to be unlikely to respond to treatment. Even thoughthere is controversy about whether to stop therapy even in the face of apparent treatment failure(i.e., the concept of viral ‘fitness’ and possible benefit of antiretroviral selective pressure onviral replication dynamics even in the setting of high viral loads and low CD4+ counts), 55, 56 wemust recognize that the benefits of antiretroviral therapy, even when effective, are not immediate,and that they must be evaluated in light of potential favorable impact to prevent futuredecline. Thus, it is reasonable to question whether it makes therapeutic sense to continueantiretroviral therapy in a patient dying of lung cancer or end-stage liver failure—whether ornot the medications could even be tolerated in this setting—or in the obvious end stages ofprogressive symptomatic HIV disease. In these instances, antiretroviral therapy will not be likelyto have any meaningful benefit and will probably only add to the therapeutic confusion in apatient who is clearly dying yet for whom aggressive therapy is being continued. However, insome cases, the patient may have such a strong emotional investment in continuing therapy thatit is completely reasonable to continue it, although it should be clear that this is as much aU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 25