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

Chapter 24.26 picas Medical Care at the End of LifeCarla S Alexander, MD, Anthony Back, MD and Margaret Perrone, RN, CHPNINTRODUCTION■ This chapter discusses medical care at the end-of-life, and is organized into four sections, asfollows:• Dying in the Era of HAART• Preparing Patients and Families for Imminent Death• Clinical Management of Imminently Dying Patients• After-Death CareDYING IN THE ERA OF HAARTTrajectory of DyingIn the early days of the HIV epidemic, hospice referrals tended to follow a typical disease trajectory.A patient’s clinical decline was most often marked by multiple hospitalizations, extensive musclewasting and weight loss, desire to stop restorative therapies, and/or fatigue and resulting inability tocope with activities of daily living and problem-solving. Now, depending upon the patient’scomorbidities and ability to adhere to combination therapies, there are multiple trajectories for endstageHIV disease. Patients with active illicit substance use who are unable to adhere to treatment,for example, may have the course of illness complicated by recurrent skin abscesses, multiple episodesof endocarditis, and lack of medical follow-up resulting in antibiotic resistance and death fromsepsis. These patients may also experience infections such as mycobactierium avium complex(MAC), cryptococcal meningitis and pneumocystis carinii pneumonia (PCP) as causes of death. Forother patients, newer treatments may prolong survival time without much illness. In these cases, thecause of death has shifted from opportunistic infections to end-stage organ failure or other medicalcomplications found with any chronic disease.Prognostic IndicatorsPrognostication based upon a combination of signs and symptoms is crucial in determining themost appropriate clinical management strategy to alleviate suffering in persons near the end-of-life.In the U.S., for hospice programs to accept reimbursement from Medicare, patients must have aprognosis of six months or less if the disease were to run its normal course. Decisions to withdrawchronic therapies and introduce other treatments that might have been avoided earlier in the courseof illness, such as steroids, must be based upon a reasonable assessment of the patient’s life expectancyand goals.Prognostication of time until death in HIV/AIDS is difficult. This is particularly true in young peoplebecause their basic cardiovascular health can sustain life longer than is possible in an older personwith the same symptoms. Physicians tend to make overoptimistic prognostic predictions, particularlyif they have had a long relationship with the patient. 1,2 Prior to the use of HAART, the NationalXXIVU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 493