"Nobody should die from HIV:" Patient and provider perspectives on death and the relevance of early end-of-life care decision-making in the context of HIV

Background: AIDS Patients are less likely than those with other life-threatening illnesses to have discussed advance directives with their health care providers, although the reasons are unknown. The goal of the present study was to develop a model for how death and end-of-life care (EOLC) is conceptualized and discussed during HIV healthcare appointments. Methods: 47 HIV-positive patients and 11 HIV health care providers participated in a study on collaborative treatment planning. Semi-structured qualitative interviews were conducted to elicit patient and provider accounts of their thinking and discussions related to death and EOLC planning. Interview data were transcribed verbatim and analyzed using a secondary comparative method. Results: Participants described both a calm acceptance of death and a resistance toward it. Those who described denying the likelihood of death from HIV were less likely to want to discuss it, irrespective of whether they were patients or providers. Patients and providers differed with respect to notions of patient empowerment and attributions of control in terms of disease progression, imminence of death, and EOLC decision-making. Although some providers emphasized compassionate care, patients focused almost exclusively on EOLC medical procedures. Conclusions: These data suggest important avenues to improve communication related to death and dying among HIV-positive patients and their providers. Anxiety related to uncertainty about the future likely contributes to denial. We argue for the routinization of EOLC discussions to assuage anxiety about HIV progression and the dying process thereby improving patient empowerment and locus of control.