Are Transfusions a Barrier to High-Quality End-of-Life Care in Hematology?

In 2017, over 55,000 Americans died of a hematologic malignancy. That’s more than the number of deaths from breast cancer, a more common malignancy. Today, over half of Americans who die of cancer receive end-of-life care services via hospice. While hospice is sometimes misconstrued as a place or a building, it is more fundamentally a philosophy of care as well as an insurance benefit. Hospice was first offered in the United States in 1982 through Medicare and has since expanded to private insurers and younger patients. Indeed, growing evidence demonstrates that hospice provides very high-quality care at the end of life. Most people receiving hospice care die in their homes, in peace and comfort, surrounded by loved ones. They spend less time in hospitals and receive less aggressive treatment in their last days when these treatments are unlikely to yield meaningful benefits. As such, hospice care has emerged as the gold standard for high-quality care of the dying in the U.S.

Unfortunately, evidence suggests that patients with hematologic malignancies are significantly less likely to use hospice care services than patients with solid tumors,¹  instead receiving aggressive care at the end of life, including chemotherapy in the last 14 days, or spending time in a hospital, intensive care unit, or emergency department in their last month, sometimes even dying in the hospital.^2-4  Furthermore, when hematologic malignancy patients do use hospice, they are more likely to do so for a very short period of time, thus missing out on many of its benefits.⁵ 

While the origins of this problem are likely multifactorial, it is often said that hematologic malignancies themselves pose unique barriers, such as the frequent need for transfusion support.^4,6  This is because transfusions are often not able to be provided to patients receiving hospice care, since they may be homebound, making the logistics of transfusion more difficult. Additionally, the cost of regular transfusions generally exceeds the “per diem” payment that hospice agencies receive to pay for the costs of caring for a patient, thus precluding transfusion support entirely at many smaller agencies. While there is no legal provision preventing the use of transfusions in hospice, the practical implications of doing so have made this service unavailable at most hospice agencies.⁷  A national survey study of 349 practicing hematologic oncologists confirms this observation with 62 percent stating that lack of transfusion support from hospices is a barrier to hospice referral, and that they would refer more patients if red cell or platelet transfusions were allowed.⁸  Clearly, many of us believe that transfusion support provides real benefits to our patients.

This raises important questions: What do data show about the role of transfusions near the end of life? Do transfusions truly have palliative benefits? There is unfortunately very little evidence to guide our thinking on this topic. To date, there have been just a few small and mostly noncontrolled, non-blinded studies assessing the palliative benefits of transfusion support in patients with cancer. These studies often include patients with solid tumors and sometimes even other non-cancerous diseases, and their most common focus has been in assessing the role of red cell transfusions in alleviating symptoms like fatigue or dyspnea. Data regarding the impact of platelet transfusions are even more lacking. What little data do exist generally suggest at least some benefit without clear evidence of harm. For example, in one of the largest studies to date (101 patients), 78 percent of patients receiving red cell transfusions had improvement in one of their target symptoms (fatigue, breathlessness, weakness or dizziness).⁹ 

The data are a bit clearer regarding the impact of transfusion dependence on the quality of end-of-life care. In a large SEER Medicare analysis, transfusion dependence was associated with markedly less hospice use in patients with myelodysplastic syndromes.¹⁰  Similarly, in a small, retrospective, single-institution analysis, we found that transfusion dependence was associated with more in-hospital deaths and less use of hospice.¹¹  Furthermore, in an analysis presented at the 2017 ASH Annual Meeting, using SEER Medicare data from over 21,000 patients with acute and chronic leukemias, we noted a markedly shorter time in hospice among transfusion-dependent (TD) patients (6 days vs. 11 days for non-TD patients, p< .001), suggesting that the need for transfusion support may significantly delay hospice enrollment.¹² 

Absent more conclusive data on the palliative benefits of transfusions, what should practicing hematologists do? Many of us have cared for patients who we feel have derived tangible and meaningful benefits from palliative transfusion support. Some patients have experienced marked amelioration of profound fatigue or dyspnea. Others seem to have lived longer or stayed home a bit longer and had better quality of life during their last days, weeks, or months. Yet without large, robust, randomized studies, we cannot prove this. However, many of us feel strongly enough about our observations that it feels unfair and inappropriate to withhold these potentially beneficial therapies so as to enable a hospice referral. As such, many of us refer our patients to hospice care late, or not at all, even when we know the myriad benefits of hospice care (both of us are, in fact, board certified palliative care specialists).

In order to resolve this dilemma, it is clear that more research is needed. However, we also think there’s enough preliminary evidence and precedent around current transfusion practices to warrant pragmatic research, such as the testing of care models that allow transfusion support concurrently with hospice care, perhaps even in patient’s homes. We hypothesize that this would enable many of our end-stage hematologic malignancy patients to elect hospice care sooner, and thus derive its many benefits. Earlier hospice care should translate into more time at home with family near the end of life, with better quality of life. Patients with hematologic malignancies should not have to choose between transfusions that provide them with palliative benefits, and high-quality end-of-life care through hospice.