- Most hospice programs do not offer access to blood transfusions.
- In a survey of blood cancer patients, access to palliative blood transfusions was of greatest importance when considering enrollment in hospice care.
- Both transfusion-dependent and transfusion-independent patients placed high value on access to transfusions.
Access to services not traditionally associated with hospice, particularly palliative blood transfusions, is a key consideration for patients with advanced blood cancers when they are deciding whether to enroll in end-of-life care, according to a survey study.
Among 200 eligible patients with a life expectancy of 6 months or less, access to palliative blood transfusions was of greatest importance when considering enrollment in hospice care, reported Oreofe O. Odejide, MD, MPH, of Dana-Farber Cancer Institute in Boston, and colleagues in JAMA Network Open.
Based on survey responses and using a best-worst scaling strategy, the authors assigned a mean standardized importance score (SIS) to routine and nonroutine hospice services (with the sum total equal to 100) and found that access to blood transfusions (mean SIS 20.53), telemedicine (18.45), transportation to and from medical appointments (13.09), and visiting nurses (12.15) were considered to be the most important services.
The three least important services according to survey respondents were access to peer support (mean SIS 5.06), social workers (4.35), and chaplains (1.80).
The survey also showed that when respondents were grouped by transfusion requirements, both the transfusion-dependent and transfusion-independent groups placed the highest value on access to transfusions.
"Given that the majority of hospices in the U.S. do not provide transfusion access, patients with blood cancers are faced with the impossible choice of preserving access to palliative transfusions versus accessing quality home-based hospice care," wrote Odejide and colleagues. "Our findings underscore the need to develop and test novel hospice delivery models that combine palliative transfusions with routine hospice services to effectively alleviate discomfort and optimize the [quality of life] of patients with blood cancers near the [end of life]."
In a commentary accompanying the study, Pamela Egan, MD, of Tufts University School of Medicine in Boston, and Dana Guyer, MD, of the Warren Alpert Medical School of Brown University in Providence, Rhode Island, noted that the healthcare system has arbitrarily labeled transfusion as a life-prolonging strategy, rather than a supportive one, even though transfusion "may be the most beneficial symptom management strategy for patients with leukemia."
Thus, they observed that while the benefits of hospice care for patients with advanced hematologic malignancies nearing end of life are clear, that recommendation becomes complicated when those patients are told they'll have to stop transfusions.
"We find it painful and difficult to explain this to our patients," Egan and Guyer wrote. "It is time to heed the call from the American Society of Hematology and palliative care and hospice agencies nationwide to revise the Medicare hospice benefit such that patients with blood cancers can receive hospice care as soon as their cancer-directed treatments are no longer valuable without sacrificing the quality-of-life-sustaining transfusions."
In explaining the rationale behind the study, Odejide and colleagues said that while the evidence suggests transfusion access plays a key role in end-of-life care, "little is known about the importance that patients with blood cancers place on access to transfusions in their decision-making regarding hospice."
Patients eligible for the survey had to be 18 or older and have two or more outpatient visits to the cancer center and a physician-estimated prognosis of 6 months or less.
Participants were presented with a series of 10 questions with different combinations of hospice services in groups of four, and were asked to select the service they considered the most and least important when deciding whether to sign up for such a program.
The 200 participants had a median age of 70, 66.5% were men, and 88% were white.
The most common diagnosis was leukemia (36.5%), followed by lymphoma (31%). Among patients with leukemia, 93.2% had acute myeloid leukemia, and 6.8% had acute lymphoblastic leukemia. In patients with lymphoma, 67.7% had an aggressive non-Hodgkin lymphoma, 25.8% had an indolent non-Hodgkin lymphoma, and 6.5% had Hodgkin lymphoma.
The median time from blood cancer diagnosis to survey completion was 23.8 months, and 30% reported receiving more than one blood transfusion in the 30 days prior to survey completion.
Disclosures
This study was supported by a grant from the National Cancer Institute to Odejide.
Odejide also reported receiving grants from the Dana-Farber Cancer Institute.
Egan and Guyer reported no conflicts of interest.
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