Searching for the “exit ramp”: Bereaved caregivers (BCGs) describe discontinuation of transfusions at the end of life (EOL) for loved-ones (LOs) dying from acute myeloid leukemia (AML).

Abstract

e24000 Background: Transfusions may delay hospice care. This study examined how transfusions and other factors influenced care transitions, including decisions related to hospice care, for patients with AML from diagnosis to death. Methods: Nineteen BCGs participated in semi-structured interviews about their experiences. Interviews were audio recorded, transcribed and qualitatively analyzed. Results: The research team identified three stages in BCG experience: 1. Acceptance and Hope: BCG initial response to an AML diagnosis was acceptance of chemotherapy and transfusions as necessary to extend life and potentially cure the AML. Benefits of treatment were emphasized over potential harms or details. 2. Reading the Signals: BCGs learned to interpret information from a variety of sources to appreciate whether their LO was heading in the right direction or not. The signals included discussions with or decisions of the oncologist, changes or no changes in lab results, changes in the LO’s physical condition, and changes in care location in the hospital (e.g., ward bed to ICU bed). Signals were either cautionary or hard stops. Cautionary were seen as conditional, e.g., if things did not improve then LO may be at EOL. Cautionary signals were described as vague and ambiguous. Hard stops were clearer and were typically a clinician decision or recommendation to discontinue treatment and/or transfusions because there was no longer a possibility of benefit. 3. Searching for the Exit-Ramp: Hard stops precipitated awareness that death was imminent and an often-rushed search for how to care for the LO at the EOL. In retrospect the transition made sense to the BCG but they often felt unprepared at the time of transition. Conclusions: The benefits and burdens of transfusions are important signals to BCG about the EOL. Early cautionary signals and discussion may prepare BCG for transitions. Continuation of transfusions in hospice may eliminate a chance for critical conversations.