Hospice and hematologic malignancies: Utilization and caregiver perspective.

Abstract

72 Background: Hematologic malignancies (HM) such as leukemias, lymphomas, and myeloma are potentially curable or may have long lasting remission with current therapy. While therapy may prolong life even in an incurable setting, treatments for relapsed or refractory disease for many hematological malignancies fail and a substantial number of patients with HM are terminally ill. Hospice care services are notably underutilized for HM. Methods: We performed a retrospective cohort analysis of 22 patients treated from 2013-2016 with terminal HM. Using an adapted version of the Burden Scale for Family Caregivers, surviving family members of deceased patients were surveyed for their perspective of hospice care services. Variables examined included date of diagnosis, data of hospice enrollment if applicable, if the patient experienced any resuscitation attempts, if the patient died in hospital, number of days for last hospitalization, and admissions/ER visits within 6 months of death. Results: 11/22 (50%) of patients had AML/ALL; 9/22 (41%) had refractory lymphoma; 1/22 (4.5%) had refractory myeloma; 1/22 (4.5%) could not be included as the patient was subsequently enrolled on clinical trials. Time from diagnosis to death for AML/ALL patients was 306 days; Refractory lymphoma and myeloma patients was 408 days. 8/21 (38%) of patients died in hospital, with 1 resuscitation attempt. For AML/ALL patients, 6/11 (55%) enrolled in hospice at average of 363 days. Once in hospice, average time to death was 25 days. For Refractory lymphoma and myeloma patients, 9/10 (90%) enrolled in hospice at average of 320 days. Once in hospice, average time to death was 70 days. 7/22 (31%) of surviving family were able to be reached to participate in our adapted survey. 4/7 caregivers would not have utilized hospice/palliative care sooner than they did; 2/7 caregivers would have enrolled sooner retrospectively; 1/7 caregivers did not have palliative care/hospice options offered to them. Conclusions: Terminally ill patients face significant barriers to hospice care despite evidence of worsening disease. Realistic expectations and discussions with patient and caregivers need to be addressed in patients with relapsed/refractory HM.