“Death is as Much Part of Life as Living”: Attitudes and Experiences Preparing for Death from Older Adults with Sickle Cell Disease

Abstract

The life-limiting and unpredictable nature of sickle cell disease (SCD) is well-established, yet there is limited literature on end-of-life planning. The purpose of this study was to describe perspectives about preparing for death for older adults with SCD. We enrolled 19 older adults with SCD (age ≥ 50 years) into this qualitative descriptive study. Theme 1 was “anticipation of early death,” with sub-themes: (a) informed of early death and (b) making plans for death. Theme 2 was “near death experiences.” Theme 3 was “differences in level of comfort with death” with subthemes: (a) death as a part of life and (b) differences in level of comfort discussing death. Theme 4 was “influence of spirituality” with subthemes: (a) God controls the timing of death and (b) belief in the afterlife. These results will inform interventions to improve the quality of patient-provider communication to provide goal-concordant end-of-life care for adults with SCD.