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

Chapter 23.26 picas Medical Care in Advanced AIDSFrederick J Meyers, MD, and John F Linder, MSW, LCSWINTRODUCTION■ Well-informed patients can optimize their quality of life through partnership with their physicianin clinical decisionmaking. This collaborative process is particularly important for patients withadvanced AIDS and their families. This chapter assists the clinician in striking the appropriatebalance between disease-directed therapy and comfort-centered care in caring for people withadvanced disease.Specific clinical events, presented in Table 23-1, should, at a minimum, prompt an explicit discussionof the goals of care, and may trigger a shift in emphasis from cure or disease management to palliation.Acknowledging and discussing with the patient these transitions in illness and the inherentimplications is integral to quality patient care. Failure to do so adversely affects patient quality of lifeand often leads to hopelessness, depression and amplification of physical symptoms.These discussions with patients are extremely important interventions and require sophisticatedcommunication skills. (See Chapter 21: Patient-Clinician Communication.)QUALITY-OF-LIFE-BASED DECISIONMAKING FORPATIENTS WITH ADVANCED AIDS■ Many patients receiving highly active antiretroviral therapy (HAART) experience marked improvementin their clinical condition. Others are not as fortunate. Some have irreversible deficits(usually neurologic, cognitive and/or motor) and live at a level of considerable disability or incapacity.1, 2, 3 Others experience persistent treatment toxicities that make remaining on HAART difficultor impossible. Moreover, even for those who do experience improvements in clinical status, there isnot necessarily an improved quality of life in areas other than depression. 1 Over time, therefore, theburden of treatment may begin to outweigh its benefits. New therapies increase the chances of livinglonger, but often with diminished physical or cognitive capacity and onerous treatment-related symptoms.3, 4 This is particularly true with second-line and salvage therapy. For some patients, livinglonger in this diminished state is less desirable than a shorter life.Providers must, therefore, elicit the patient’s view on the key physical, medical, emotional and spiritualelements that define a good quality life, the life worth living. Providers must recognize, moreover, thatpatients’ perspectives may differ sharply from their own, and understand the ethical implications inherentin these differences. (See Chapter 20: Care for the Caregiver and Chapter 17: Ethical Issues.)Sentinel Events Triggering DiscussionAbout the Advanced AIDS StateThe occurrence of the events presented in Table 23-1 often indicates that death is likely in theforeseeable future and should cause the provider to explicitly review prognosis, goals, quality-of-lifeperspective and expectations with the patient and family.XXIIIU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 479