Thomas LeBlanc, MD, a medical oncologist and palliative care physician at Duke University School of Medicine, has been talking about the challenges of getting high-quality end-of-life care for patients with hematologic malignancies for years. “I guess I complained to, or near, the right person,” he said. “Ultimately, it led to a discussion with the [American Society of Hematology (ASH)] Committee on Practice.”
Those discussions, in turn, helped shape a Senate bill. The Improving Access to Transfusion Care for Hospice Patients Act of 2021 (S. 2566), sponsored by Senators Jacky Rosen (D-NV), John Barrasso (R-WY), and Tammy Baldwin (D-WI), will create a demonstration program to provide a separate payment for blood transfusions provided to patients receiving Medicare hospice benefits.
The goal of the legislation is to ensure that patients, including those with blood cancers and other hematologic diseases and conditions, receive high-quality end-of-life care. Transfusions for patients with blood cancers can address palliative needs related to bleeding, breathlessness, and profound fatigue.
No End (-of-Life Care) in Sight
Compared to patients with solid tumor cancers, those with blood cancers rarely receive high-quality end-of-life care. Studies show that in the last 30 days of life, patients with hematologic malignancies have more hospital admissions and are more likely to die outside of their homes than patients with solid tumors.1
“The literature that’s out there is clearly demonstrating that patients with transfusion dependence don’t enter hospice until very late in their disease course,” said Jerome Seid, MD, an oncologist and hematologist at Great Lakes Cancer Management Specialists in Michigan, who worked on the legislation as the 2020–2021 ASH Congressional Fellow. “They’re not willing to give up what makes them feel better.”
Dr. LeBlanc added, “a lot of evidence clearly shows that patients with blood cancers are much more likely to receive what is considered to be poor-quality end-of-life care, meaning they are far more likely to die in the hospital instead of at home, to spend time in an ICU [intensive care unit] at the end of life, to go to the emergency department near the end of life or receive chemotherapy at the end of life, and to not use hospice care at all or to use it for a very short period of time.”
Patients with leukemia have a dysfunctional bone marrow leading to severe anemia, which in turn causes extreme fatigue and shortness of breath. Treatment plans for these patients frequently include blood transfusions to replenish their blood’s oxygen-carrying capacity and increase energy levels. Unfortunately, for many patients, entering hospice means giving up the transfusions, so some physicians won’t refer patients to hospice care if they think transfusions won’t be given.
Misconceptions and Minimal Funds
One reason that patients in hospice may not be given transfusions is the misconception that the process constitutes a disease-modifying treatment. The physician might think that a patient who continues to receive transfusions isn’t really ready for hospice. A hospice facility may believe it shouldn’t cover the treatment because there’s a possibility that the transfusions can extend a person’s life.
“Some people do feel that transfusions are really just kind of holding on to active treatment,” Dr. LeBlanc said. He admitted that “if you’re dying of leukemia, transfusions are prolonging your life, probably. ... But I think most hematologists feel that the transfusions help the patients live better and have better quality of life, and that’s the main reason they’re giving them.”
While Medicare requires coverage of palliative services, including blood transfusions, the organization’s payment structure discourages it with fixed daily payments that are too low to account for the added expense of transfusions.
In 2018, hospices received a per diem rate of $192.78 ($1,349.46 per week) for the first 60 days of care and $151.41 ($1,059.87 per week) after that, according to talking points compiled by ASH in favor of the bill. Comparatively, the average cost of a unit of packed red blood cells is $1,000, and the average patient with a hematologic malignancy receives two units per week ($2,000). That means it costs the average hospice facility more to care for a patient who needs transfusions than it gets paid to do so.2
“Many hospices do currently provide palliative transfusions for their patients that need and want them. But others, often smaller providers, can face financial challenges when offering frequent transfusions, given the procedure’s high cost or when it is determined that transfusions would serve either to extend life or no longer offer palliative benefit,” Theresa Foster, vice president for Hospice Policy at the National Association for Home Care and Hospice, told ASH Clinical News. “The demo called for by [S. 2566] could be a good experiment to test whether novel payment mechanisms for high-cost procedures that straddle the palliative/curative line can support more timely and appropriate hospice use for certain patient populations.”
A New Option
Drs. LeBlanc and Seid have been advocating alongside ASH for a new system, one that provides hospice facilities extra payments when necessary to provide transfusions. Doing so, they believe, will increase the number of hematology patients receiving high-quality end-of-life care and could even save Medicare money. Cost of care could be decreased by about $5,000–$15,000 per beneficiary, mostly as a result of stopping chemotherapy and other treatments and decreasing hospitalizations.
In 2019, ASH issued a Statement in Support of Palliative Blood Transfusions in Hospice Setting,3 recommending that CMS work with hospice providers and other stakeholders
- to clarify that palliative transfusions are a covered benefit and should be symptom-based and performed in collaboration with hematologic oncologists.
- to create innovative reimbursement models to promote the provision of palliative transfusions, such as allowing them to be paid for separately under Medicare Part B.
- to explore novel ways to access transfusions, such as at-home transfusions.
The statement is what inspired Dr. Seid to apply for the ASH Congressional Fellowship. “This is something I think a congressional fellow could accomplish in a one-year period,” he wrote in his application.
The bill that Dr. Seid worked on would create a demonstration program to provide a separate payment to cover palliative blood transfusions in hospice. For several years, ASH has worked to educate members of Congress about the issue of lack of access to blood transfusions in hospice care, and has advocated for innovative Medicare payment models such as the one introduced in the new bill.
When the bill was introduced at the end of July 2021 ASH President Martin S. Tallman, MD, of Memorial Sloan Kettering Cancer Center, applauded the move and issued a statement4 in support.
But there’s still more to be done. ASH members and other hematology professionals can help carry the bill through Congress by sending a personalized letter to their representatives.
“During my time in Senator Rosen’s office, I was impressed and pleased to know that those letters and the communications that come from constituents are read and they’re tabulated,” Dr. Seid said. “And the Senator does get a weekly report of how many people are contacting the office in favor of an issue.”
One place to start is ASH’s online form. Better yet, Dr. Seid said, hematologists can ask their patients do the same. “Their stories will resonate more than my own.”
References
- Odejide OO. A policy prescription for hospice care. JAMA. 2016;315(3):257–258.
- American Society of Hematology. Talking points for access to blood transfusions in hospice settings. Accessed November 16, 2021. https://www.hematology.org/-/media/hematology/files/advocacy/talking-points-blood-transfusions-in-hospice.pdf.
- American Society of Hematology. ASH statement in support of palliative blood transfusions in hospice setting. June 25, 2019. Accessed November 2, 2021. https://www.hematology.org/advocacy/policy-statements/2019/palliative-blood-transfusions-in-hospice.
- American Society of Hematology. ASH president applauds introduction of legislation for palliative blood transfusions. July 30, 2021. Accessed November 2, 2021. https://www.hematology.org/newsroom/press-releases/2021/ash-president-applauds-introduction-of-legislation-for-palliative-blood-transfusions.