HEME-Hospice: An Intervention to improve Hospice Use for Patients with Hematologic Malignancies

PROJECT SUMMARY Hospice is the gold standard of quality end-of-life (EOL) care. As compared to the de-facto option of dying in a hospital, hospice improves quality of life (QOL), reduces EOL care expenditures, and improves caregiver bereavement outcomes. Although most patients who die from cancer receive hospice care, adults with blood

cancers are a glaring exception, with less than 25% receiving hospice services. The few who enroll in hospice typically do so in the last few days of life, negating most of its benefits. Lack of access to blood transfusions is the prime barrier to hospice use for this patient population. Refractory anemia and thrombocytopenia are a

common final pathway for many blood cancers and cause debilitating fatigue, shortness of breath, and bleeding. Transfusions palliate these symptoms and improve QOL; yet, most hospices do not provide access to transfusions and none provide home transfusions. Faced with the terrible choice of continuing QOL-

preserving transfusions or accessing quality home-based hospice care, most patients opt for ongoing transfusions. As a result, most blood cancer patients ultimately die in the hospital, subjected to painful and unnecessary medical interventions, and separated from the home and the people they care most about in life.

In response to this great need, we have developed a novel model of hospice care—HEmatology-ModifiEd Hospice (HEME-Hospice)—with structured input from blood cancer patients, their caregivers, and hematologic oncologists. Through a unique partnership with a large hospice organization and an academic transfusion

service, HEME-Hospice combines core elements of hospice (e.g., visiting nurses, home health aides, social workers, chaplains) with home transfusions that are triggered by symptoms (e.g., fatigue, shortness of breath, and bleeding) and informed by laboratory parameters. We propose a parallel cluster randomized trial of 350

hospice-eligible adult patients with blood cancers, clustered by hematologic oncologist, to test the efficacy of access to HEME-Hospice versus usual care, with the primary outcome of hospice enrollment. Secondary outcomes include length of hospice enrollment, high-intensity healthcare use, expenditures, patient/caregiver-

reported QOL and mood, and quality of death. We hypothesize that access to HEME-Hospice will result in higher rates of hospice enrollment compared to usual care. We also anticipate that it will result in a reduction in high-intensity healthcare use near the EOL, lower expenditures, and improved QOL and mood for patients and

their caregivers. This application offers the opportunity to rigorously address a critical barrier that results in many patients with blood cancers dying without the benefits of hospice care. Ultimately, this research has the potential to transform hospice care delivery and improve EOL care for blood cancer patients.