We were in the fight together: The expectations of bereaved caregivers of patients with acute myeloid leukemia from diagnosis to death.

PURPOSE: Patients with hematologic malignancies are more optimistic than their oncologists and their expectations may be a barrier to timely hospice care. Patient expectations toward the end of life (EOL), however, have not been characterized. In this study, we analyzed interviews of bereaved caregivers to understand the expectations of patients diagnosed with acute myeloid leukemia and the factors that influenced those expectations, from diagnosis until death. METHODS: Bereaved caregivers (n = 19) participated in an in-depth interview that included open-ended and semi-structured prompts, within 18 months following patient death. Interviews were analyzed using a modified grounded theory qualitative approach and constant comparative methods. RESULTS: We identified three themes relevant to expectations: Taking Stock, Being Stuck, and Disruption. Caregivers described clear and optimistic early expectations that AML is treatable. It was understood that treatment was required to survive. Later, when treatment options were limited, patients and caregivers became stuck in a belief that the patient could continue to live indefinitely on supportive care or at least until new more effective treatments were available. Caregivers often realized that the patient was at the end of life only when faced with a disruption, an event or conversation that changed their expectations for indefinite patient survival. CONCLUSIONS: Caregivers described continued expectations for patient survival until presented with irrefutable evidence to the contrary. The study suggests patients and caregivers may make better EOL care decisions if their early optimism is deliberately moderated by ongoing conversations with clinicians that highlight the sentinel events that signal treatment failure and explain how expectations and goals are changing from living a longer life to dying a more comfortable death.

Bereaved Informal Caregivers Rarely Recall a Relationship Between Transfusions and Hospice in Acute Myeloid Leukemia.

AIMS: The inability to prescribe blood transfusions is a potential barrier to timely hospice enrollment for patients with blood cancers. The benefits and harms of transfusions near the end of life (EOL), however, are poorly characterized and patients' preferences are unknown. We sought to characterize the recollections of bereaved caregivers about the relationships between transfusions and hospice enrollment decisions. METHODS: We recruited 18 bereaved caregivers of 15 decedents who died within 6-18 months of the interview. Interviews focused on caregivers' recollections of transfusion and hospice enrollment decisions. Transcripts were analyzed for themes. RESULTS: We identified 2 themes. First, caregivers described that transfusions were necessary and the decisions to receive transfusions or not were deferred to the clinicians. Second, only 1 caregiver recalled transfusions as relevant to hospice decisions. In that instance there was a delay. Caregivers identified difficulties recognizing death was imminent, hope for miracles, and the necessity of accepting life was ending as more relevant barriers. CONCLUSIONS: The results indicate clinicians' beliefs in transfusion at EOL may be a more relevant barrier to hospice enrollment than patients' preferences. Strategies to evaluate accurately and discuss the actual benefits and harms of transfusions at the EOL are necessary to advise patients and integrate their preferences into decisions.