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

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A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 2: Overview of Clinical Issues26 picasFigure 2-2: Trajectories of Illness over Time in Chronic, Fatal DiseasesCancer(or “Pre-HAART” AIDS)CongestiveHeart Failure(or AIDS inHAART era)Functional Disability or Severity of IllnessDeathDeathTimeTypical of untreatable cancers (e.g. pancreas) or AIDS before the advent of highly active antiretrovial therapy (HAART).Typical of chronic, progressive illness (e.g. congestive heart failure) or AIDS in the HAART era.Adapted, with permission, from J. Lynn. Serving patients who may die soon and their families. JAMA 285:925-32, 2001. (Copyright 2001, American Medical Association)8U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau
A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 2: Overview of Clinical Issuesalso central to the context of care for patients early in the AIDS epidemic, and it was commonfor providers to attend funerals and memorial services as well as provide formal and informalbereavement services for survivors.26 picasWhat is striking from this summary of salient clinical issues is that care for patients with AIDSin the pre-HAART era constituted comprehensive palliative care and that many of the elementsof palliative care remain central to the routine care of patients with HIV even in the therapeuticera. Indeed, the widely used World Health Organization definition for palliative care serves as anappropriate and timely description of comprehensive care for patients with advanced HIV disease:II“Palliative medicine is the study and management of patients with active, progressive,far advanced disease for whom the prognosis is limited and the focus ofcare is the quality of life. [It is] the active total care of patients whose disease is notresponsive to curative treatment. Control of pain, of other symptoms, and of psychological,social, and spiritual problems, is paramount. The goal of palliativecare is achievement of the best quality of life for patients and their families.” 18What is also striking is the emergence of a new cohort of HIV care providers who did not livethrough that earlier era and who have learned about HIV care more within the therapeuticparadigm of HAART. Not surprisingly, this paradigm tends to be more strictly biomedical andless likely to incorporate end-of-life and palliative care issues since, thankfully, end-of-life issuesare less inescapable than they previously had been. However, it is important to recognize thatthe curative vs. palliative dichotomy is a false one. HIV care has evolved over a short period oftime with the rapid development of disease-specific therapy, although the tension between palliativeand curative approaches has always been present. Since the early 1980’s there have beenseveral mini-‘paradigm shifts’ in which the hope of cure for AIDS or the reality of the limitationsof HIV therapy have led prematurely to extreme optimism or pessimism, respectively, as shownschematically in Figure 2-3. The overall direction has been toward more curative or diseasemodifyingtherapy, but the curve has oscillated back and forth, and even after the heady optimismof the late 1990’s following the introduction of the protease inhibitors, few if any researchersare currently speculating about the likelihood of viral eradication or ‘cure’ for HIV infection.In fact, perhaps a more sober assessment would lead one to conclude that AIDS is a chronic,progressive disease that may be effectively managed in some patients but may still cause considerablemorbidity and mortality in others. As such, while we eagerly embrace and seek to extendany benefits of HAART and other disease-specific therapies, we must also be prepared to anticipateand address the important aspects of palliative and end-of-life care that many (if not all) ofour patients will be facing at some point during the course of their illness. Otherwise, we run therisk of isolating or unconsciously abandoning our patients when our therapies are no longereffective or of being ill-prepared to help and accompany them through the later stages of theirdisease. The more we focus on the therapy, the less we tend to focus on the patient. Indeed,some providers experience growing frustration with patients who do not adhere to HAART, andthe conflict over adherence may becomes the main platform for interaction – or avoidance –between provider and patient. This conflict can eventually become dysfunctional, especially forpatients who refuse therapy outright, which may threaten the basis of the relationship unlessU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 9
Page 4 and 5: DedicationA Clinical Guide to Suppo
Page 6 and 7: Lynn A Jansen, RN, PhDAssistant Res
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Chapter 6.26 picasPulmonary Symptom
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Chapter 14.26 picasCulture and Care
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DRUGS AND THERAPIES INDEXNOTES: Ent
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