From Fate to Tragedy: The Changing Meanings of Life, Death, and AIDS

Abstract

The advent of highly active antiretroviral therapy (HAART) and quantitative viral load assays has revolutionized the care of HIV-infected patients. However, this paradigm shift has also had unexpected, sometimes adverse consequences that are not always obvious. Before antiretroviral therapy, physicians learned how to accompany patients through their illness; to bear witness to sickness and dying; and to help patients and their families with suffering, closure, and legacy. Since we have become better at treating the virus, a new temptation has emerged to dwell on quantitative aspects of HIV management and monitoring, although the skills that we learned earlier in the epidemic are no less necessary for providing good care. Our new-found therapeutic capabilities should not distract us from the sometimes more difficult and necessary task of simply "being there" for patients for whom HAART is no longer effective. The definition and practice of end-of-life care for patients with AIDS will continue to evolve as AIDS comes to resemble other chronic, treatable, but ultimately fatal illnesses, such as end-stage pulmonary disease and metastatic cancer, in which clinicians must continually readdress with their patients the balance of curative and palliative interventions as the disease process unfolds over time. The coming challenge in HIV care will be to encourage the maintenance of a "primary care" mentality-with attention to the larger psychosocial issues, end-of-life care, bereavement, and a focus on the patient as opposed to the illness-alongside our new antiretroviral paradigm. Otherwise, we run the risk of forgetting what we learned about healing, from a disease that we could not cure.