Palliative Care Still in Its Infancy in Hematologic Malignancies

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Palliative care is slowly but surely being integrated into the treatment of patients with solid tumors, but its role in the hematopoietic stem cell transplant setting is still lagging, speakers said at the 2016 Palliative Care in Oncology Symposium.

Hematologic malignancies are just different from solid tumors. There is more prognostic uncertainty. Every treatment has a small but real chance of cure, and this leads to the absence of a clear transition from the curative phase to the palliative phase.
— Areej El-Jawahri, MD

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“There is a huge symptom burden among patients with hematologic malignancies undergoing transplant, and there are still barriers to the integration of palliative care in this setting,” said Areej El-Jawahri, MD, Director of the Bone Marrow Transplant Survivorship Program at Massachusetts General Hospital and Instructor in Medicine at Harvard Medical School, Boston.1 (See Dr. El-Jawahri’s video on this topic for The ASCO Post newsreels at

Christina K. Ullrich, MD, MPH, Assistant Professor of Pediatrics at Harvard Medical School and Senior Physician in Pediatric Hematology/Oncology and Pediatric Palliative Care at the Dana-Farber Cancer Institute and Boston Children’s Hospital, Boston, described the heavy toll taken on patients undergoing hematopoietic stem cell transplantation,2 emphasizing the need to focus on the “whole person in the cure-oriented setting.”

“Patients who undergo hematopoietic stem cell transplantation experience various forms of distress throughout the transplant trajectory, and the intense and cure-oriented nature of hematopoietic stem cell transplantation can contribute to this. We want to ensure that patients live not only longer, but as well as possible,” Dr. Ullrich declared. “Collaboration, communication, and advance preparation are important ways of mitigating distress in this unpredictable and high-stakes setting.”

Patients who undergo hematopoietic stem cell transplantation experience various forms of distress throughout the transplant trajectory. Collaboration, communication, and advance preparation are important ways of mitigating distress in this unpredictable and high-stakes setting.
— Christina K. Ullrich, MD, MPH

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Symptom Burden in Hematologic Malignancies

An insightful study by Manitta et al of 180 patients concluded that those potentially curable hematologic malignancies had a symptom burden and level of distress that were comparable to those in patients with metastatic solid tumors.3 Among the mean of nine symptoms per patient were fatigue (69%), insomnia (41%), neuropathy (38%), drowsiness (41%), and dry mouth (40%). In addition, patients reported “tremendous” psychological distress, including worry (50%), irritability (36%) and nervousness (33%), Dr. El-Jawahri reported.

“You name it, this population has it,” she commented. “In this study, their symptoms were equivalent to patients with solid metastatic tumors who had a life expectancy of 6 months or less.”

Closer to the end of life, patients with hematologic cancer are still receiving high-intensity care. A study by Hui et al4 showed frequent use of chemotherapy (43%), emergency room visits (54%), hospitalizations (81%), admissions to the intensive care unit (39%), and deaths in the intensive care unit (33%) or hospital (47%). These numbers were much higher than those seen in patients with solid tumors.

In a study led by Dr. El-Jawahri in patients with acute myeloid leukemia (AML), patients averaged four hospitalizations and spent 28% of their lives in the hospital, with 61% actually dying there.5 “Despite these numbers, studies show that the use of palliative care and hospice in this population is extremely low,” she commented. In her study, only 16% of the patients with AML had a palliative care consultation, and only 22% received hospice care.

Trajectories of Illness and Distress

Each phase of the hematopoietic stem cell transplantation trajectory offers different challenges. In the period before hematopoietic stem cell transplantation, psychological distress is high. Pretreatment distress predicts for treatment-related pain, anxiety, long-term well-being, and, according to some studies, survival, Dr. Ullrich revealed. Hematopoietic stem cell transplantation may be their only potentially curative option in this “high-stakes setting.” For this reason, among others, they may not appreciate the potential consequences. They often expect the acute effects but not the life-altering effects down the road.

Dr. Ullrich continued: “I view the early period as a real opportunity to support their adjustment to illness and their life posttransplant…. This requires some expertise and skill. Studies show we are not good at detecting emotional distress,” she acknowledged. “It’s important to tailor the discussion of risks to the patient’s own needs and coping style and to balance the presentation between the acute and downstream risks. Patients need an opportunity to discuss their fears. This is an ongoing conversation. You also have to review this information in noncrisis times.”

Palliative Care in Hematologic Malignancies

  • Palliative care has not been established as a part of the care of patients with hematologic malignancies.
  • Patients undergoing hematopoietic stem cell transplant have an uncertain illness trajectory and uncertain prognosis, which contribute to their distress.
  • Early intervention of palliative care for symptom control and for end-of-life care is critical to the well-being of these patients. Various barriers must be overcome to make this happen.

During and after hospitalization for hematopoietic stem cell transplantation, physical distress predominates, and symptoms may be inadequately addressed, since clinicians tend to view physical symptoms as inevitable. Delirium can occur, with persistent effects on memory, executive functioning, depression, and anxiety. Hematopoietic stem cell transplantation produces myriad symptoms and effects on quality of life.

Later, during the “integration” period, physical and emotional effects may linger; for most patients, quality of life returns to baseline within 1 year. Although patients may resume their prior roles and activities, their health may not be fully restored. Circumstances after hematopoietic stem cell transplantation may be discordant with patients’ expectations, fueling their distress, Dr. Ullrich said.

Barriers to Incorporating Palliative Care

Dr. El-Jawahri described the numerous barriers to integrating palliative care into the hematopoietic stem cell transplantation setting. They include illness-specific barriers, cultural issues and misperceptions, and system-based obstacles.

“Hematologic malignancies are just different from solid tumors. There is more prognostic uncertainty. Every treatment has a small but real chance of cure, and this leads to the absence of a clear transition from the curative phase to the palliative phase,” she said.

Rapid declines at the end of life are common, although rare, with solid tumors. Also, complications at the end of life are different with hematopoietic stem cell transplantation and often not well understood by palliative care teams, especially infectious complications, bleeding problems (and blood product support), and graft-vs-host disease.

“For the life of me, I don’t know how we manage severe graft-vs-host disease in hospice,” acknowledged Dr. El-Jawahri. “End-of-life care delivery models are not developed for patients with hematologic malignancies. There’s a lack of understanding about what death looks like for this ­population.”

Mistrust among clinicians can also emerge through the cultural misperception that palliative care equates with end-of-life care. There are unrealistic patient and clinician expectations, clinician uncertainty about prognosis, and reluctance to “take away hope,” she added. “Doctors keep shooting for a cure…. As a result, our palliative care services have not been exposed enough to this population.”

Overcoming These Barriers

Dr. El-Jawahri called for studies to identify the specific needs of patients with hematologic malignancies and show the positive impact of early palliative care. She wants to identify high-risk populations and “trigger points” for early access to palliative care as well as address barriers to caring for terminally ill patients at home, creating models to facilitate these strategies.

An intervention described at the Palliative Care in Oncology Symposium by Dr. El-Jawahri may help. Her study, which focused on symptom control in curable patients, enrolled 160 patients scheduled for hematopoietic stem cell transplantation at Massachusetts General Hospital.6 Within 72 hours of admission, patients were randomized to receive an inpatient palliative care intervention or standard transplant care. The intervention included visits from a palliative care clinician at least twice weekly to discuss symptoms (88.9%), foster coping skills (85.2%), and build rapport (98.8%), among other things. The intervention led to significant improvements in quality of life, depression, anxiety, and symptom burden at 2 weeks (when most symptoms peak), and the effects were sustained at 3 months.

Opportunity to Educate and Collaborate

“We were able to collaboratively engage bone marrow transplant clinicians, nurses, palliative care clinicians, patients, and their families in developing a meaningful intervention focused on delivering palliative care early. With clinicians, we focused on the science and rationale. With our palliative care clinicians, we spent the first month teaching about the treatment and needs of this population and addressed misconceptions. We wanted to show that palliative care is not just about end-of-life care, and in doing so, we were able to build trust among all,” Dr. El-Jawahri said. “This led to a cultural shift on our transplant unit.”

“We have an optimistic future,” she concluded. “Our field is in its infancy, but we have opportunities to assess the role of palliative care and to incorporate it throughout the illness trajectory of patients with hematologic malignancies.” ■

Disclosure: Drs. El-Jawahri and Ullrich reported no potential conflicts of interest.


1. El-Jawahri A: Integration of palliative care into the care of patients with hematologic malignancies. 2016 Palliative Care in Oncology Symposium. General Session 4. Presented September 10, 2016.

2. Ullrich CK: Relieving distress throughout the stem cell transplant trajectory. 2016 Palliative Care in Oncology Symposium. General Session 4. Presented September 10, 2016.

3. Manitta V, Zordan R, Cole-Sinclair M, et al: The symptom burden of patients with hematological malignancy: A cross-sectional observational study. J Pain Symptom Manage 42:432-442, 2011.

4. Hui D, Kim SH, Roquemore J, et al: Impact of timing and setting of palliative care referral quality of end-of-life care in cancer patients. Cancer 120:1743-1749, 2014.

5. El-Jawahri AR, Abel GA, Steensma DP, et al: Health care utilization and end-of-life care for older patients with acute myeloid leukemia. Cancer 121:2840-2848, 2015.

6. El-Jawahri A, LeBlanc TW, VanDusen H, et al: Randomized trial of inpatient palliative care in patients hospitalized for hematopoietic stem cell transplantation. 2016 Palliative Care in Oncology Symposium. Abstract 103. Presented September 10, 2016.





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