End-of-Life Care for Patients With Hematologic Malignancies: Room for Improvement

End-of-Life Care for Patients With Hematologic Malignancies: Room for Improvement

By David Hui, MD, MSc, FRCPC; Oreofe Odejide, MD; and Thomas Leblanc, MD, MA

Article Highlights

  • Patients with hematologic malignancies often receive more intensive care at the end of life, including chemotherapy, prolonged hospitalizations, and admissions to the intensive care unit.
  • Evidence suggests that disease-related factors, attitudes of hematologic oncologists, and patient preferences may all play a role in this increased rate of intensive care at the end of life.
  • Efforts to overcome these gaps in care will require improved patient and provider education about specialty palliative care, further research on unique needs and barriers to palliative care in hematology, and greater resources to integrate palliative care as part of standard hematologic care.

As it turns out, cancer diagnosis not only determines how long a patient may live but also how the patient will die. Patients with hematologic malignancies, such as acute leukemia, lymphoma, and multiple myeloma, often receive more intensive care at the end of life, including chemotherapy, admission to the intensive care unit, and life-support measures such as mechanical ventilation.

A study from The University of Texas MD Anderson Cancer Center that compared the quality of end-of-life care between patients with advanced hematologic malignancies and solid tumors reported significant differences.1 Specifically, in the last 30 days of life, patients with hematologic malignancies were significantly more likely to receive chemotherapy (43% vs. 14%; p < 0.001) and targeted therapy (34% vs. 11%; p < 0.001) compared with patients with solid tumors. Furthermore, patients with hematologic malignancies had more frequent emergency room visits (54% vs. 43%; p = 0.03), any hospital admission (81% vs. 47%; p < 0.001), multiple (≥ 2) hospital admissions (23% vs. 10%; p < 0.001), prolonged (> 14 days) hospitalization (38% vs. 8%; p < 0.001), intensive care unit admissions (39% vs. 8%; p < 0.001), death in an acute care facility (33% vs. 4%; p < 0.001) and fewer palliative care consultations (22% vs. 48%, p = 0.003).1 Several population-based studies from other countries also revealed similar findings for patients with hematologic malignancies.2,3

Why are patients with hematologic malignancies more likely to receive systemic disease–directed therapy in the last 30 days of life?4 Evidence suggests that disease-related factors, hematologic oncologists themselves, and patients all play a role.

Disease-Related Factors

Unlike most patients with metastatic solid tumors, cure may still be possible for some patients with advanced hematologic cancers, even in the setting of relapsed disease, leading to uncertainty regarding whether a patient is truly near the end of life. In addition, patients with certain hematologic cancers that are by definition incurable (e.g., follicular lymphoma and multiple myeloma) may respond to several lines of treatment and have extended life expectancy. As such, it is often unclear which relapse is the last or when disease is truly refractory. Because of the high level of uncertainty surrounding prognosis, patients with hematologic malignancies and their oncologists may be likely to opt for a therapeutic trial, often at the expense of more in-depth end-of-life care planning. Indeed, in a qualitative study of hematologic oncologists, all participants reported that identifying the end-of-life phase for hematologic cancers was challenging, and this difficulty often contributed to delays in initiating end-of-life care measures.5

In addition, the plethora of new treatment options for many hematologic malignancies means that treatments are more accessible throughout the disease trajectory. With the advent of several targeted therapies for hematologic malignancies, which often have more tolerable side-effect profiles compared to traditional chemotherapy, the threshold for recommending systemic therapy is likely lower now than ever.

Hematologic Oncologists’ Attitudes

Hematologic oncologists’ attitudes and beliefs toward end-of-life care also likely contribute to this care pattern. In a recent case vignette study, hematologic and solid-tumor oncologists were asked to provide their treatment recommendation for a 60-year-old man with advanced incurable cancer, an expected survival of 1 month, and an Eastern Cooperative Oncology Group performance status of 4, who expressed interest in a treatment with 15% response rate, moderate toxicity, and no expected survival gain.6 Surprisingly, there were wide variations in oncologists’ responses, with some strongly against treatment and others strongly favoring treatment. Consistent with anecdotal observations, hematologic oncologists were much more likely to offer treatment to this hypothetical patient compared to solid-tumor oncologists.6 This study highlights that hematologic oncologists’ attitudes and beliefs may contribute to more intensive care at the end of life even after controlling for differences in patient characteristics and treatment options.

Indeed, hematologic oncologists were more likely to feel a sense of failure when they were not able to alter the course of disease, were less comfortable discussing death and dying with their patients, and were more comfortable prescribing treatments to patients with poor performance status.5,6 Thus, the primary focus on cancer treatments and limited end-of-life discussions may also explain why patients with hematologic malignancies are often treated more intensively at the end of life. Although hematologic malignancies are certainly different, sometimes even requiring intensive curative-intent therapies, there is also a bias among hematologic oncologists toward intensive care near the end of life that is not completely explained by differences in disease trajectories or treatment paradigms.

Patient impacts

The desire to pursue cancer treatments may be associated with a preference for life-prolonging measures among patients. The use of chemotherapy in the last days of life is, in turn, associated with a greater likelihood of other intensive interventions at the end of life, such as cardiopulmonary resuscitation, mechanical ventilation, and death in the intensive care unit.7 Because the treatment protocols for hematologic malignancies are highly complex and patients close to the end of life are particularly frail, the decision to undergo chemotherapy often results in hospital admission for treatment administration and monitoring. Some patients may end up with repeated hospital visits and/or prolonged hospital stays for disease- and treatment-related complications.

Less Palliative Care Access

Although data show that patients with hematologic malignancies receive more intensive care at the end of life, there are also clear differences in use of palliative care services overall in this population.

Fig. 1
There has been much confusion about the terms “supportive care,” “palliative care,” and “hospice care.” Figure 1 illustrates the overlap and differences among these terms based on a systematic review.8,9 Under this framework, palliative care is supportive care for patients with advanced diseases, and it is mostly provided in the acute-care setting through ambulatory clinics or inpatient services.10 Hospice care represents a branch of palliative care delivered to patients in the last 6 months of life. Here, we use the term “palliative care” to describe earlier, more upstream specialty supportive care in acute-care facilitates other than hospice care. This type of “early palliative care” is clearly associated with improved symptom burden, quality of life, and less intensive cancer-directed care at the end of life among patients with advanced solid tumors.11,12 This may be achieved by minimizing symptom crisis through expert symptom management, maximizing spiritual care, facilitating prognostic discussions, and addressing psychosocial needs.10 Despite the fact that patients with hematologic malignancies have similar symptom burden as patients with solid tumors,13,14 referral to palliative care13,15 is significantly lower among the former group and is often delayed.

Barriers to palliative care access include misconceptions that “palliative care” is the same as hospice care and that hematologic oncologists should be fully responsible for the delivery of all types of supportive care, including complex symptom management and terminal care.6,16-18 In a recent multisite study of 66 oncologists that examined attitudes regarding palliative care, hematologic oncologists more frequently considered palliative care to be synonymous with end-of-life care compared with solid-tumor oncologists (61% vs. 16%, p < 0.001). There was also a widely held belief among hematologic oncologists that palliative care is only appropriate when there are no more cancer-directed therapies available.18

In addition, given that the care setting for most blood cancers is less multidisciplinary compared to solid tumors, hematologic oncologists are accustomed to independently addressing all their patients’ needs and may be less inclined to refer them to palliative care. This desire to independently manage patient needs may also be fueled by distrust of palliative care specialists. Indeed, in a series of in-depth interviews with hematologic oncologists evaluating barriers to palliative care referral, some participants reported negative experiences where they felt that palliative care consultants provided inaccurate prognostic information to their patients or pushed for do-not-resuscitate orders when it was felt to be inappropriate by the hematologic oncologists.18,19

Low Rates of Timely Hospice Enrollment

Hospice care is a subset of palliative care that is specifically delivered during the last 6 months of life. Despite several studies demonstrating the benefits of hospice care, such as improved quality of life for patients20 and lower rates of psychiatric illness among bereaved caregivers,21,22 hospice utilization among patients with hematologic cancers is significantly lower compared to those with solid malignancies.23-26 Moreover, when patients with blood cancers do enroll in hospice, they are likely to do so near death.25-27

Although hematologic oncologists’ perspectives and patient preferences contribute to low rates of hospice use, enrollment is also likely limited by the fact that most hospices do not provide supportive transfusions. In a series of focus groups of hematologic oncologists, although many acknowledged the importance of hospice care, they also expressed concern that hospice seems largely geared for patients with solid malignancies and does not address some of the needs unique to patients with blood cancers.5 This disconnect between the current hospice model and the transfusion needs of this patient population likely discourages hospice referrals by hematologic oncologists and also fosters low rates of hospice acceptance of patients.

Potential Solutions

If we are to effectively address the end-of-life quality gap in hematologic malignancies, several unique initiatives are needed in the core domains of research, education, and implementation. Regarding research needs, we must explicitly and thoroughly study the experiences of patients with hematologic malignancies. After all, if we hope to develop targeted interventions to improve the quality of life for patients with hematologic malignancies, we must first have a good understanding of the unique experiences they face compared to patients with solid tumors. Compared to solid tumors, hematologic malignancies are remarkably heterogeneous with regard to prognosis, available treatments, treatment intensities, risks, and outcomes. Although existing data tell us quite a bit about the issues that most frequently plague patients with advanced solid tumors, we still know comparatively little about what patients with hematologic malignancies go through across the diversity of those diseases and treatments.

Regarding education, we must enhance hematologists’ understanding of the value of concurrent specialty palliative care. The current paradigm in hematologic oncology is an “either/or” one, predicated on an old-fashioned view of palliative care as being only about the end of life or a euphemism for hospice. Under this model, patients either pursue active therapy or they receive palliative care, but never both. Yet we know from several high-quality randomized controlled trials in advanced solid-tumor settings that concurrent specialty palliative care significantly improves patients’ lives along with active cancer treatment, and that it need not be focused on the end of life. Although we certainly must study this finding specifically in hematology, we should not delay efforts to promote more integration of palliative care as a standard component of comprehensive cancer care for those with hematologic or solid tumors alike. This is consistent with recommendations from ASCO, the American College of Surgeons Commission on Cancer, the National Comprehensive Cancer Network, and the Oncology Nursing Society. As an effort to improve hematologists’ understanding about palliative care, the American Society of Hematology included palliative care as a core topic in its 2015 Annual Meeting education program.

Lastly, and perhaps most importantly, we must better understand the unique barriers to implementation of palliative care in hematologic oncology care. For example, we know very little about what patients with hematologic malignancies think about palliative care, and we are just beginning to understand their doctors’ perspectives, as discussed earlier. Understanding these issues may have practical implications for implementation. For example, some have suggested that the name “palliative care” is a barrier in hematology. In one survey study, when the service name was changed from “palliative care” to “supportive care,” hematologic oncologists reported that they would refer significantly more symptomatic patients with newly diagnosed cancer (66% vs. 21%), suggesting that re-branding may represent one potential solution to overcome the stigma associated with palliative care.17 More studies are needed to examine the impact of early palliative care, specifically for patients with hematologic malignancies.

Next Steps

It is clear that significant gaps exist in end-of-life outcomes in hematologic oncology compared to solid-tumor oncology. Important contributors to these gaps include heterogeneity in tumor biology and treatment outcomes, differences in attitudes and beliefs among hematologists, and possibly differences in preferences among patients with hematologic malignancies. Efforts to overcome these gaps in care will require improved education of patients and oncologists about specialty palliative care, further research to better understand some of the unique needs and barriers to palliative care in hematology, and greater resources to integrate palliative care further upstream as part of standard hematologic care.