Patients with acute myeloid leukemia (AML) and their caregivers generally defer end-of-life (EOL) transfusion decisions to clinicians without participating in shared decision-making. This tendency may delay hospice admission in patients who would benefit from this care the most, according to a new study published in the American Journal of Hospice and Palliative Medicine.
Hematologists typically endorse hospice admission to ensure high-quality EOL care in patients with certain blood cancers, but these patients tend to enroll in hospice less often and stay for shorter periods of time, compared with patients who have solid tumors. Ongoing transfusions are a potential barrier to enrollment in these centers, possibly affecting patients’ quality of life.
In this study, Larry Cripe, MD, of the Indiana University School of Medicine, and researchers surveyed 18 caregivers of 15 patients who had died from AML between six and 18 months prior to the start of the study. The investigators asked the caregivers about their overall experiences with the management of AML and the decisions around transfusions and hospice care.
Seven of the patients who had died had relapsed/refractory AML, while four had primary refractory disease. Another two patients in remission died from complications associated with consolidation, while two others had untreated AML.
In the fixed-choice question portion of the interviews, a caregiver reported one decedent had received transfusions within 24 hours of death. For the other patients, the duration between the last transfusion and death was within two weeks (n=10) and over one month (n=2). Caregiver-reported goals of EOL transfusions were to prolong life (n=3), feel better (n=8), or both (n=4), as well as to improve blood counts (n=6).
The semi-structured interviews revealed two main themes related to hospice care and EOL transfusions. First, caregivers largely felt transfusions were necessary and the decision to receive these transfusions was typically deferred to the patients’ clinicians. Likewise, there was little involvement on the part of the caregiver or patient in making transfusion decisions, but these decisions were still accepted without question.
Second, only one caregiver recalled a desire to continue transfusions as relevant to the decision to admit the patient to hospice care. In this caregiver’s case, there was a delay in making those decisions.
Caregivers also named several barriers to hospital enrollment, independent of transfusions. These barriers included difficulty recognizing the imminency of death, belief that recovery was possible despite its improbability, and believing that hospice enrollment was accepting the inevitability of death.
Limitations that may affect the generalizability of these findings include the study’s small sample size, as well as the recruitment of caregivers from a single academic center.
To engage patients and caregivers in transfusion decisions toward EOL, Dr. Cripe and coauthors advise that hematologists more carefully weigh the perceived general benefits of transfusions. “Careful assessment of the actual benefit and discussions of the potential harms – including delayed access to other beneficial hospice services – of transfusions seems more likely to improve EOL care than mandated reimbursement of transfusions on hospice,†they wrote.
The authors report no relevant conflicts of interest.