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 IssuesPrevalence350,00026 picas300,000250,000200,000150,000100,00050,0000Figure 2-1: Estimated AIDS Incidence,* Deaths, and Prevalence,by Quarter-Year of Diagnosis/Death – United States, 1981 - 200025,0001993 Definition **implementationAIDSDeathsPrevalence20,00015,000Number10,0005,00001981 1983 1985 1987 1989 1991 1993 1995 1997 1999 2001QUARTER – YEAR*Adjusted for reporting delays.**Due to the implementation of the expanded AIDS case definition in 1993, there was a disproportionate increase in AIDS cases reported during that year.Source: CDC. HIV and AIDS - United States, 1981-2000. MMWR 50:430-4, 2001.6U.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 IssuesIn the pre-HAART era, AIDS was a rapidly fatal, acute infectious disease, characterized by multipletypical opportunistic infections, swift decline, and death within months of diagnosis. Theimpact of disease-specific treatment on the natural history of HIV infection has now resulted ina much more 26 picas variable trajectory of illness for many patients. For some, HAART has meant thepossibility of full return of function and health, with AIDS experienced as a chronic conditionthat has little impact on daily quality of life. For others, treatment has meant the ‘conversion ofdeath to disability,’ with the emergence of a chronic disease phase characterized by exacerbations,remissions, and eventual decline and death from the illness, 9 as the survival time fromAIDS diagnosis to death has lengthened. 10 Thus, over a remarkably short period of time, thehistorical evolution of HIV disease—for which the rapid disease course from diagnosis to deathonce resembled that of untreatable fatal cancers—has shifted to a trajectory more typical ofchronic, progressive illnesses such as congestive heart failure, chronic obstructive pulmonarydisease, or hepatic cirrhosis, with much more variability in outcomes. 11 (Figure 2-2.) Clinicalassessment of prognosis and outcomes is thus much more complex than was previously the case.As AIDS-specific mortality has declined, surveillance data and clinical studies have indicatedthat mortality among patients with HIV has proportionally increased as a result of co-morbiditiessuch as hepatitis B and C, co-occurring malignancies (both AIDS-defining and non-AIDSdefiningcancers), and substance abuse-related deaths. 9,12-16 In addition, for certain patients,even the benefit of HAART is not always attainable, due to lack of access to care, inability toadhere to effective treatment regimens, active substance use or other psychiatric illness, progressiveviral resistance despite therapy, serious other co-morbidities, or unmanageable drugtoxicities. For all these reasons, comprehensive AIDS care must continue to encompass end-oflifeissues even as treatment continues to advance. Just as we must advocate for timely access toHAART for all patients, so too must we be ready to provide needed and appropriate palliativecare even after HAART is no longer a life-extending option. The need to incorporate both palliativeand curative approaches in HIV care is even more important than it was in the pre-HAARTera: the availability of treatment does not give clinicians the luxury of ignoring the importantissues posed by a chronic progressive illness and its management over time. 17IICENTRALITY OF PALLIATIVE CARE IN HIV CARE■ In the early years of the AIDS epidemic, a cohort of physicians and other care providers foundthemselves confronted with a disease that they could not understand, let alone cure. It was atime in which the narrow medical model of care—isolating specific elements of disease andthen focusing on treating the pathology—was totally inadequate in the face of the enormity ofthis disease and its effects on patients and their families. Paradoxically, it was a time in whichclinicians learned the importance of being present, of accompanying patients through illnessand being with patients and families as they grappled with the critical issues of death and dying.Clinicians learned how to focus on the goals of care, helping to empower patients even in thecontext of a life-threatening illness and discussing treatment decisions in terms of quality of lifeand care preferences of patient and family, rather than making decisions for their patients (asoccurs with the more one-sided and hierarchical model that often predominates in the medicalencounter). When disease could not be prevented or even treated, it was important to providerelief by treating pain, other symptoms, and the overall suffering caused by progressive illness.Patients’ needs were understood to be multi-dimensional—medical, psychosocial, and spiritual—andthey needed to be addressed in a multi-disciplinary model of care that did justice tothe complexity of these needs, especially at the end of life. Families and significant others wereU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 7
Page 4 and 5: DedicationA Clinical Guide to Suppo
Page 6 and 7: Lynn A Jansen, RN, PhDAssistant Res
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Chapter 14.26 picasCulture and Care
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The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

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