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.
Cripe LD, Cottingham AH, Martin CE, Hoffmann ML, Sargent K, Baker LB. Bereaved informal caregivers rarely recall a relationship between transfusions and hospice in acute myeloid leukemia [published online ahead of print, 2021 Apr 29]. Am J Hosp Palliat Care. doi: 10.1177/10499091211013290.
This research adds to a multitude of other studies suggesting hematologists struggle to navigate care decisions for patients and families at the EOL. We know patients with blood cancers are more likely than those with solid tumors to die in the hospital, spend time in an intensive care unit or emergency department near the EOL, or to receive chemotherapy in the last two weeks of life. Hematologic patients are also less likely to use hospice care services overall.
One of the frequently cited challenges that may be causing this is that many hospice agencies are simply not able to offer this as part of the suite of services they provide, due to cost-related factors and logistical challenges, even though palliative transfusion support helps patients feel better. It has therefore often been assumed that these transfusion access issues delay or preclude many hematology patients from using hospice care services.
This study suggests that the treating hematologist’s beliefs about the importance of transfusions, in conjunction with that clinician’s experiences and knowledge about transfusion availability in hospice, may be the primary drivers of hospice referral and use, rather than anything related to the patient or caregiver’s preferences and input.
Clinicians’ primary objective is to better communicate and understand the goals and values of each patient and their caregiver, and then use our medical expertise to make a treatment recommendation that is most likely to help them achieve their goals.
Another issue is that many hematologists do not have a firm understanding of palliative medicine as a field or of what is possible with non-hospice models of home-based palliative care. Honestly, I think there is often a fatalistic perception about this issue; many of us assume that our patients can’t get transfusions once we refer them to hospice, or that it will be too difficult to coordinate, that they would be better served by not being referred yet. As a result, more patients end up in the hospital at the EOL and are denied the great benefits of hospice care for their overall well-being and that of their families and caregivers.
Thomas LeBlanc, MD
Duke University School of Medicine
Durham, North Carolina