Early palliative care integration has increased in oncologic settings but remains less common − and often misunderstood − in hematologic malignancies, especially for patients undergoing hematopoietic cell transplant.
When Dame Cicely Saunders founded the first modern hospice in 1967 and established the culture of palliative care, the focus of this new medical discipline was almost exclusively on end-of-life care. Since then, however, physicians in many fields have begun to recognize that palliative care specialists have much more to offer than specific types of symptom relief for patients who are close to death.1 Researchers and clinicians have made substantial progress in recent years integrating palliative care early on in the oncology patient experience, for example, and now palliative care is regularly combined with standard treatment approaches for patients with solid tumors.
In the context of hematologic malignancies, however, palliative care remains less commonly used. Barriers to palliative care in the hematological malignancy context are partly cultural and include lack of access to transfusions in patients enrolled in hospice programs, as well as the availability of a high number of active therapies that can effectively treat even critically ill patients and rapid change in the clinical status of patients.
Hematopoietic cell transplant (HCT) may be the “final frontier” for palliative care in the hematology-oncology setting. HCT is one of the most intensive procedures in hematology oncology, and while it has the potential to cure a substantial proportion of patients with hematologic malignancies, HCT is associated with high morbidity (which may continue for years if chronic graft-versus-host disease becomes established) and mortality. Even when transplantation is successful, patients experience a variety of symptoms such as pain, nausea, depression, loneliness while isolated, and anxiety.
Palliative care specialists are currently rarely consulted in the HCT setting, but many feel that this should change and that their expertise can help mitigate some of the symptoms patients experience. Increasingly, palliative care physicians are urging transplant teams and insurers to recognize that palliative care can serve an important role for transplant patients by reducing symptoms throughout the disease process and helping patients and their families cope with the experience.
“Palliative care provides an extra layer of support for patients facing a life-limiting or life threatening illness, regardless of prognosis,” said Areej El-Jawahri, MD, an oncologist at Massachusetts General Hospital.
In 2015, the Centers for Medicare and Medicaid Services (CMS) established a payment schedule for advance-care planning discussions and services, which has prompted a larger discussion about palliative care in a variety of settings, including responding to the needs of transplant patients. Thomas LeBlanc, MD, an oncologist and palliative care physician at Duke University Hospital in Durham, North Carolina, called the move a “small but significant part of a much bigger picture” in an ASH Clinical News article published in December 2016.2
ASH Clinical News spoke with Drs. El-Jawahri, LeBlanc, and others about integrating palliative care into the treatment of patients with hematologic malignancies and those undergoing HCT.
Defining Palliative Care
Despite its common overlap with hospice and end-of-life care, palliative care specialists consider palliative care to be an additional support throughout the timeline of care that should not be limited to a patient’s last days of life. Palliative care can be included before, during, or after a procedure as a patient’s needs change.
“Most of the initial data on early palliative care integration came from patients with solid tumors who had a limited life expectancy,” said Dr. El-Jawahri. “This is partly because patients with blood cancers often have a potentially curative pathway. Regardless of prognosis, palliative care clinicians have expertise in symptom management and addressing patients’ and caregivers’ existential and psychological distress when dealing with an illness. We feel these skills are also relevant to patients with cancers pursuing curative therapy with stem cell transplant.”
Introducing Palliative Care
Palliative care guidelines have yet to be developed for HCT patients. Some other palliative care guidelines can be extended and applied to these transplant patients, but they are not designed for this group.
While the opinions of the experts consulted by ASH Clinical News varied slightly regarding the ideal time to introduce palliative care, ranging from at the time of diagnosis to upon hospital admission for transplant, all agreed it was best to begin meeting with palliative care specialists before the actual procedure if possible. Specialists, patients, and families can discuss the goals of treatment and what to expect early on.
“Early palliative care integration in transplant is ideal, as early as the pretransplant evaluation period when transplant is being considered,” said Deena Levine, MD, an oncologist at St. Jude Children’s Research Hospital in Memphis, Tennessee. “Palliative care needs should continue to be assessed throughout the transplant course and through recovery to ensure comprehensive care and support are delivered.”
Later, it is important for providers to follow up and identify any new or changing symptoms and understand the patient’s desires.
“Patients may say, ‘The nausea is not bothering me that much, but if you could just make this itching go away, that would be a lifesaver to me,’” said Linda Burns, MD, Consultant at the Center for International Bone and Marrow Transplant Research and past president of the American Society of Hematology (ASH). “It’s a shared process. Everyone needs to have a voice and work together for the best possible outcome and to meet the patient’s goal.”
Many Methods, Many Models
Increasingly, hospitals are integrating palliative care specialists directly into the multidisciplinary transplant team. In May 2019, Flannery Fielding, NP, a palliative care nurse practitioner at Cleveland Clinic in Ohio, told ASH Clinical News that her group of palliative care specialists had begun working as “an embedded service” with the solid tumor/oncology team just a few years ago, and with hematologists on bone marrow transplants only a few months ago.3 But, she added, it’s still “relatively uncommon” to have a palliative care clinician working with the transplant team.
While the experts ASH Clinical News spoke with agreed that having palliative care specialists embedded into a multidisciplinary transplant team from the start of care is the ideal situation, they noted that this is not possible everywhere. In many hospitals where palliative care is not embedded into normal treatment for HCT, specialists could be called in by the primary transplant physicians to serve individual patients with particular needs.
“[Providing palliative care] is a shared process. Everyone needs to have a voice and work together for the best possible outcome and to meet the patient’s goal.”
—Linda Burns, MD
In 2014, a team at West Penn Hospital in Pittsburgh published results of a study showing successful integration of a palliative care service within the bone marrow transplant department.4 In consultations, before the palliative care team was integrated, 66% of patients reported unacceptable or very unacceptable pain. Among patients who died, only 5% were referred to hospice. After introduction of the palliative care team, 41% were referred to hospice. “The successful integration of a palliative care team into a hematological malignancy unit suggests great potential for positive interdisciplinary collaboration between these two fields,” the authors wrote.
In some cases, as transplant physicians work more closely with palliative care specialists, the partnership can grow from a consultative model to an embedded model. Dr. Levine said this was the case at St. Jude, for example. “There was a gradual increase in palliative care presence and involvement with transplant patients that with great teamwork led to universal involvement and a fully integrated palliative care team in transplant.” The hospital now runs a tiered model, where all transplant patients receive a basic level of palliative support, but the level of palliative care can be raised if patients display specific traits. “This allows us to deliver integrated palliative care to all patients but reserve time and resources for the patients who may benefit the most from full team support,” she said.
Barriers to Uptake of Palliative Care in Transplant
Limited resources like money and qualified providers have slowed the use of palliative care teams in HCT. “The fact of the matter is,” said Ms. Fielding, “even if we wanted to have all HCT patients seen by a palliative care specialist, we don’t have enough providers.”
In February, Dr. LeBlanc published a review along with Brittany Gatta, MD, from Duke University, which identified three additional barriers that prevent hospitals from using palliative care in HCT: factors intrinsic to the disease course, clinician ownership of patients, and misconceptions about palliative care.6
It can be difficult to identify the appropriate moment to refer patients with hematologic malignancies to palliative care, Drs. LeBlanc and Gatta observed, since their conditions often change rapidly, and they frequently engage in curative treatment options until near the end of life.
As palliative care is becoming more common in all oncology settings, researchers have begun working to identify standard triggers that should motivate doctors to refer patients to a palliative care consultation.
One 2017 study in the Journal of Oncology Practice found that implementing standard triggers for palliative care consultations for inpatients with solid tumors, such as active symptoms and a hospital stay of more than 7 days, did not affect length of hospital stay but did decrease readmissions from 35% to 18% and increased the use of support services.7 “Expansion of this model to other hospitals and health systems should improve the value of cancer care,” the authors wrote.
Recognizing that many facilities do not have the resources to provide embedded palliative care to all patients undergoing HCT, Dr. LeBlanc and his team published a study in Current Hematologic Malignancy Reports, also in 2017, which outlined potential triggers for patients to be referred for palliative care.8 These triggers included poor prognosis, high symptom burden, and complex psychosocial and family needs.
But misconceptions – especially among other clinicians, who worry that they will lose control or that their patients will view a palliative care consult as a sign their doctor is “giving up” on curing them – remain a barrier to palliative care integration.
Misconceptions About Palliative Care Abound
When Dr. Burns was a transplant physician at the University of Minnesota running early-phase clinical trials, she would sometimes request palliative care consultations for her patients. She noticed that many patients worried about what this meant, and some physicians were hesitant to do involve palliative care. “In our initial discussions, we found that some of our transplant colleagues were not that accepting of palliative care services,” she said. “Also, when patients heard ‘palliative care,’ [they’d say,] ‘You don’t think this is going to work for me and there’s no hope.’”
“Something we knew going in is that ‘palliative’ has a bad connotation for patients. They think that it’s the same as end-of-life care and hospice,” said Dr. Burns.
Ms. Fielding said that patient misconceptions are especially concerning. “We certainly don’t want to cause people more anxiety.”
Dr. El-Jawahri believes that patients feel this way because of how physicians describe palliative care to the patients. “When you survey the general public about palliative care, most people don’t know what it is. So how we define and talk about palliative care with patients and families is important.”
In 2018, a team that included Drs. Burns, LeBlanc, and El-Jawahri conducted a survey of transplant physician attitudes toward palliative care.9 “Transplant physicians had not previously been asked about their interest, expertise, or expectations for palliative care services,” Dr. El-Jawahri said. Of the transplant physicians surveyed, 76% said they trust palliative care specialists to care for their patients, but 40% were concerned that these clinicians did not have the expertise to advise patients undergoing HCT on treatment decisions.
Some believe the term “palliative care” itself is one of the major barriers that prevents it from being commonly implemented and have suggested that renaming the service might increase utilization. The 2018 survey found that 82% of transplant physicians believe their patients are scared by the term.
“My hypothesis is that all this business about the name is really about treating the baggage that the clinicians carry, more so than any barriers to patients and their families,” said Dr. LeBlanc. “Some institutions – some top-tier, well-known, high-quality institutions – have actually changed the name of their palliative care service in the cancer center to things like the ‘supportive care service’ or ‘symptom management service’ because they find that the doctors then have an easier time making the referral,” he added.
A Learning Process
While experts say they feel that palliative care is beneficial for patients undergoing HCT and their families, the burden of proof remains. There have not been enough studies done to objectively measure the impact of these services on patient survival, quality of life, or the use of health-care resources in the HCT setting, making it exceptionally difficult to convince administrators to allocate resources to provide or expand this type of care.
In fact, several of Dr. Burns’ colleagues reported being denied when they proposed adding palliative care service to the transplant team at their hospitals.
“You have to come up with hard metrics that show how many patients will be served and the value for the money that an administrator will pay for a full-time equivalent person to provide the service,” she said. “The value to patient care could be a little harder to measure.”
“When you survey the general public about palliative care, most people don’t know what it is. So how we define and talk about palliative care with patients and families is important.”
—Areej El-Jawahri, MD
A National Cancer Institute review published in March 2019 noted that “relatively few interventions to manage symptom burden, impairments in physical function, and psychological distress have been formally tested in HCT recipients.”10 Still, existing research suggests that “palliative care interventions delivered by an interdisciplinary team that includes transplant clinicians and palliative care across the HCT trajectory can alleviate physical and psychological morbidity, thereby improving the patient and family experience of HCT.”
The Palliative and Supportive Care Special Interest Group, created by the American Society for Transplantation and Cellular Therapy and chaired by Dr. LeBlanc and Effie Wang Petersdorf, MD, of Fred Hutchinson Cancer Research Center in Seattle, has outlined short- and long-term goals, including essential research to improve the use of palliative care in hematology and oncology. The research goals include questions relating to the importance of patients’ goals for palliative care, physician perceptions of palliative care, defining the essential elements of interventions, identifying successful existing programs, determining whether HCT requires its own set of palliative care guidelines separate from those for solid tumors, and understanding the impact of palliative care on health-care resource use.
Over the past several years, Drs. LeBlanc, Petersdorf, and their teams have been conducting pilot and clinical studies to address these questions. For example, a randomized clinical trial published in 2016 showed that patients who saw a palliative care provider twice per week throughout their hospitalization for HCT experienced smaller declines in quality of life 2 weeks after the procedure than patients who received standard care without the palliative specialist.11
Another small study published the same year showed that early palliative care, defined as starting consultations with palliative care specialists prior to transplant, is feasible and that all 17 patients who completed follow-up evaluations reported being either “comfortable” or “very comfortable” with the consultations. Four patients said their anxiety improved, 2 said their senses of hope improved, and the other 11 saw no change. None reported a decrease in mood or sense of hope.12
“It’s a learning process,” Dr. LeBlanc explained. “Until there are more mature, convincing data that show the benefits, some people are going to remain skeptical and think, ‘I already know how to do this.’ But the story of modern integrated palliative care is that it takes a village to take good care of people with serious, complicated illnesses like advanced cancer or those who are undergoing a transplant.” —By Emma Yasinski
- Ferris FD, Bruera E, Cherny N, et al. Palliative cancer care a decade later: accomplishments, the need, next steps—from the American Society of Clinical Oncology. J Clin Oncol. 2009;27:3052-3058.
- Lawrence L. Supporting palliative care. ASH Clinical News, May 2, 2017.
- Fielding F. Partners in care: palliative care and hematology. ASH Clinical News, May 1, 2019.
- Selvaggi KJ, Vick JB, Jessel SA, et al. Bridging the gap: a palliative care consultation service in a hematological malignancy-bone marrow transplant unit. J Community Support Oncol. 2014;12:50-55.
- American Society of Hematology. ASH backs palliative blood transfusions during hospice care. June 25, 2019.
- Gatta B and LeBlanc TW. Palliative care in hematologic malignancies: a multidisciplinary approach. Expert Rev Hematol. 2020;13:223-231. 2020 February 17. [Epub ahead of print]
- Adelson K, Paris J, Horton JR, et al. Standardized criteria for palliative care consultation on a solid tumor oncology service reduces downstream health care use. J Oncol Pract. 2017;13:e431-e440.
- LeBlanc TW, Roeland EJ, El-Jawahri A, et al. Early palliative care for patients with hematologic malignancies: is it really so difficult to achieve? Curr Hematol Malig Rep. 2017;12:300-308.
- El-Jawahri A, LeBlanc TW, Burns LJ, et al. What do transplant physicians think about palliative care? A national survey study. Cancer. 2018;124:4556-4566.
- Mitchell SA. Palliative care during and following allogeneic hematopoietic stem cell transplantation. Curr Opin Support Palliat Care. 2018;12:58-64.
- El-Jawahri A, LeBlanc T, VanDusen H, et al. Effect of inpatient palliative care on quality of life 2 weeks after hematopoietic stem cell transplantation: a randomized clinical trial. JAMA. 2016;316:2094-2103.
- Loggers ET, LeBlanc TW, El-Jawahri A, et al. Pretransplantation supportive and palliative care consultation for high-risk hematopoietic cell transplantation patients. Biol Blood Marrow Transplant. 2016;22:1299-1305.