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

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 23: Medical Care in Advanced AIDSMany factors have been examined as potential influences on adherence. These include thepatient’s age, education, income, gender, active or prior alcohol or substance use, depression,relationship to the health care provider, interactions with others, primary language, race andethnicity,26 picasinvolvement with AIDS service organizations, use of reminders and cues, use of mechanicaldevices (a pill box, for instance), location of care delivery, routine, treatment side effectsexperienced, beliefs about treatment, access to care, venue of treatment, costs associated withmedications and others. 5, 26, 27 Several of these factors, while intuitively associated with greater orlesser adherence, do not bear out empirically. Furthermore, physician ability to predict adherencesuccess or failure is demonstrably poor.Current or prior substance use, poverty, illiteracy and alcohol or drug addiction, commonly thoughtto predict poor adherence, are not in fact, significantly associated with adherence. 2, 25, 28 As Wrightconcluded in a 2000 study, “not adhering to treatment regimes is so widespread that no combinationof sociodemographic variables is reliably predictive of patients’ not following doctors’ orders.” 23Depression and active alcohol abuse are the only two factors consistently demonstrated to have adeleterious effect on adherence. Scrutiny of most other characteristics yields equivocal results andargues convincingly for approaching the issue of adherence with care and on a patient-by-patientbasis. Several strategies to improve adherence have been studied and can be helpful in the clinical24, 26, 29, 30setting.CachexiaAIDS-associated cachexia syndrome reflects the uncontrolled inflammatory state induced by thevirus. 31 Oversecretion of inflammatory cytokines produces pathologic changes including proteincatabolism and weight loss. Pharmacologic appetite stimulants can lead to weight gain and may32, 33enhance the patient’s sense of well-being, but survival time is not lengthened.In advanced AIDS, symptoms of hunger and thirst are reduced or absent. Patients report anorexiaand even dysgeusia (“food tastes bad”). Caregivers frequently respond by forcing foods and, sometimesin concert with physicians, advocating for enteral or intravenous alimentation. Such supplementalfeedings are toxic, do not prolong life and are not consistent with biomedical ethical guidelinesor high quality of life. Some reasons not to artificially feed a patient with advanced AIDS arepresented in Table 23-3. 34Table 23-3: Arguments against Artificial Feeding in Advanced AIDS• Does not increase survival• Promotes suffering due to aspiration, diarrhea and abdominal pain (NG, PEG tubes)• Can be withheld, as can hydration, according to U.S. Supreme Court decisions• Is inconsistent with some religious and secular values• Distracts family from issues of emotional support, completion of relationships andother end-of-life tasksSource: Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 342:206–10, 2000.Eating is often equated to fundamental caregiving, and offers opportunities for communication andsharing. Health care providers can help caregivers and patients identify alternative activities suchas life review, storytelling, family outings, cards and games, reading. Time is often better spent pro-484U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau