While early research supports the benefits of integrating palliative care into hematology, more is needed to successfully marry the two specialties.
Any discussion of palliative care and the subspecialty of palliative medicine should always begin with a clear definition of what, exactly, palliative care and its goals are, according to Thomas LeBlanc, MD, a medical oncologist and palliative-care physician at Duke University School of Medicine in Durham, North Carolina.
Dr. LeBlanc’s preferred definition comes from the Center to Advance Palliative Care, which defines palliative care as: “Specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”1
He uses this definition to make the distinction that palliative care is “not so much about death and dying but about living better with a serious illness” – something many patients with hematologic malignancies strive for.
Last year, ASH Clinical News heard from several palliative-care specialists and hematologists about the need for the hematology specialty to “step up” and begin to more fully integrate palliative care into the treatment of their patients. The discussion was prompted by a decision from the Centers for Medicare and Medicaid Services (CMS) in 2015 to establish a payment schedule for advance-care planning discussions and services, what Dr. LeBlanc called a “small but significant part of a much bigger picture.”2
ASH Clinical News recently spoke again with Dr. LeBlanc and other hematologists involved in palliative care to find out what, if anything, has changed about the integration of palliative care in hematology in the last year.
Slow, But Steady
At Duke, Dr. LeBlanc has noticed a slow but steady uptick in the incorporation of palliative-care services as part of the standard of care for treating patients with hematologic malignancies in the last year or two. The use of these services still varies greatly from one physician to another and one institution to another, though. Individual institutions, he added, may not be doing as much to promote palliative-care services as others.
One issue that is slowing down uptake, according to Dr. LeBlanc, has to do with what he called the “branding” around palliative care. Because the field developed so recently – the American Board of Internal Medicine only started offering board certification for hospice and palliative medicine in 2008 – there are still plenty of misconceptions about the field.
Mark R. Litzow, MD, a hematologist at the Mayo Clinic in Rochester, Minnesota, agreed, noting that he has seen more of his colleagues begin to embrace palliative-care services in the hematology realm, and that they have a better understanding of the services a palliative-care consult can provide.
Board-certified, palliative-care physicians are working alongside hematologists, Dr. Litzow explained, to provide an extra layer of care in addition to the primary treatment being provided by a hematologist. He offered the treatment of patients with multiple myeloma (MM) as an example of where palliative care can be integrated into standard approaches to patients with hematologic conditions. In the past year, three new drugs have been approved for the treatment of MM and, though these treatments have improved outcomes in the patients receiving them, they also can come with significant side effects.
“These patients can have a heavy symptom burden – both general symptoms, such as fatigue or shortness of breath, and significant pain issues,” Dr. Litzow said. “By helping patients address these symptoms, palliative-care treatment can be a useful adjunct to hematologic care.”
The operative word in that sentence is adjunct. Palliative-care specialists are adding to the standard of care, not replacing it, noted Areej El-Jawahri, MD, who, along with his colleagues from Massachusetts General Hospital in Boston, conducted a randomized trial comparing the outcomes of 160 patients with hematologic malignancies undergoing hematopoietic cell transplant to receive standard of care alone or with add-on palliative care (in the form of twice-weekly visits with palliative-care physicians).3
“Compared with those who received usual care, patients who received the [palliative-care] intervention had dramatically less symptom burden, improved quality of life, less anxiety, and less depression during hospitalization for the transplant,” she said. “But, more importantly, the palliative-care intervention led to sustained improvement in patient outcomes three months after transplant.” These improvements included less decline in quality-of-life, fewer depression symptoms, and lighter symptom burden.
Dr. El-Jawahri and colleagues observed that palliative-care specialists spent the majority of their time conducting interviews with patients, discussing areas such as symptom management or coping skills, and spent time building a relationship with the patient. They also addressed specific symptoms affecting the patients’ daily lives, such as pain, nausea, diarrhea, constipation, or insomnia.
“We are not saying that transplant teams are not addressing these issues,” Dr. El-Jawahri said. “But by adding an extra layer of support, the teams can focus more on taking a patient safely through the transplantation.”
In her own interviews with palliative-care clinicians, Dr. El-Jawahri also found that these specialists spend much of their time managing patient expectations about the transplant. “In many cases, patients were experiencing severe symptoms and feared that these symptoms meant that something went wrong with the procedure,” she said. “Palliative-care consultants were able to reassure patients that, despite their symptom burden, nothing was wrong. They could help patients through this stressful period by focusing on coping and dealing with other psychologic symptoms.”
As hematologists gain a better understanding of what palliative-care services can provide for their patients, they have started to recognize additional barriers to greater integration of palliative care, such as a lack of data about the value of palliative services for patients with hematologic malignancies.
Research into the potential benefits of palliative care for patients with hematologic malignancies is far behind that of how it contributes to care of those with solid tumors, but that is slowly beginning to change.
For example, Dr. El-Jawahri and colleagues found that benefits extended to patients’ caregivers, with palliative-care interventions resulting in improved coping skills and less depression. “This evidence clearly supports the value of palliative care for patients with blood cancers,” Dr. El-Jawahri said.
While a step in the right direction, these results are from a single center’s experience, she noted. There is much more work to be done.
“We need to show – in the field of hematologic malignancies and hematology, in general – that there can be a benefit to incorporating palliative care in multiple contexts and across multiple institutions,” Dr. El-Jawahri said. “We need more studies to show the benefits in patients who are receiving curative therapy, as well as in optimizing end-of-life care for patients with hematologic malignancies.”
Drs. El-Jawahri and LeBlanc are working together to open another study looking at the potential benefit of palliative-care integration into the treatment of patients with high-risk leukemia. The study will focus again on symptom management and psychosocial support, but will also examine optimizing end-of-life care for patients with a high rate of hospitalization.
According to Larry D. Cripe, MD, medical director of palliative care at Indiana University Hospital and associate professor in hematology/oncology at Indiana University School of Medicine in Indianapolis, the provider-level barriers to better integration of palliative care into standard hematologic care may be some of the hardest to overcome.
“For hematologists, there can be a lack of inclination to provide primary palliative care – the term for palliative services provided directly by the treating physician, rather than the palliative-care specialist,” Dr. Cripe said. “Limited time, training, and skills also play a role in preventing hematologists from taking on more palliative services. And, because palliative care is a relatively new specialty, the best practices are not yet established.”
In some cases, this lack of knowledge can lead to an inherent mistrust between palliative-care specialists and hematologists, Dr. El-Jawahri added.
“This mistrust is something we witnessed in the field of solid-tumor oncology a decade or more ago, but things are very different now,” she said. “The only way to overcome that is to begin to give [palliative-care specialists] more exposure to our patients,” Dr. El-Jawahri said. “To be able to understand their unique concerns and deliver high-quality care, palliative-care specialists need to be able to actually see patients with hematologic malignancies.”
Because the integration of palliative care into hematology has been a slow process, and because hematologic malignancies are relatively rare compared with solid organ tumors, many palliative-care specialists may not be well versed in the needs of patients with hematologic conditions; they may require additional training or education about HCT or chemotherapy options, for example.
In addition, Dr. El-Jawahri expressed concern that the a shortage of palliative-care practitioners means that not all patients with hematologic disorders will have access to palliative-care specialists, begging the question, “Who will provide it?”
“We need to have large trials of palliative-care integration that will answer questions about the cost-effectiveness of these interventions and how much of an additional burden they add in terms of resource use,” Dr. El-Jawahri said. Until that evidence is produced, patients will need to rely on hematologists to provide primary palliative care; for hematologists, that means ramping up education about these services.
Priming the Pump for Primary Palliative Care
Some of the education will be intuitive and grow as palliative-care consults become more common, Dr. El-Jawahri said. During the HCT study, she and her colleagues noticed that transplant clinicians began paying closer attention to the recommendations offered during the palliative-care consults and symptom management. For instance, transplant physicians were more likely to use antipsychotics for the management of nausea in patients assigned to the intervention arm and, after the study, the researchers also noted a higher use of these drugs in patients getting standard care.
“The transplant clinicians involved in the study saw that this treatment was beneficial and started to apply it to patients who were receiving standard care – and to patients outside of the study,” she explained.
Primary palliative care is not a one-size-fits-all approach, so education will need to be tailored to the needs of hematologists, nurse practitioners, transplant physicians, and other members of the care team – as well as to the needs of the patients they treat.
“A huge part of that is going to be taking successful interventions examined in studies like ours, distilling them to their essential components, and conducting studies that integrate those components into clinical practice,” she added.
Patients also will need education about palliative care and, according to Dr. LeBlanc, that will need to come from their physicians. “When a referral to a palliative-care clinician is needed, it will be important for hematologists to understand the benefits and the reasons why that referral is happening,” he said.
The onus is on hematologists to develop an understanding of what services can be provided and how they might be of value to their patients, and then communicate that information to their patients.
“Hematologists have to be able to acknowledge that they cannot be everything to every patient, and that they may need help,” Dr. LeBlanc said. “A palliative-care specialist provides an extra layer of support that can help your patient to feel better, live better, and tolerate treatments better, while the hematologist focuses on treating the cancer. Together they can help to make the experience as good as it can be.”
Advance Care Planning
Though palliative-care clinicians have fought long and hard to correct the misconception that palliative care is equivalent to end-of-life care, the two specialties are not mutually exclusive. Yes, palliative care is more than providing end-of-life services, Dr. Litzow said, but that should not discount the importance of advance care planning and end-of-life discussions.
CMS’ 2015 decision is an important acknowledgment of this fact, he noted. Incorporating end-of-life discussions into the care of patients with hematologic conditions can be difficult because many patients have been dealing with malignancies for months or years and are still undergoing active treatment in the hope of undergoing a curative HCT.
“I am forever impressed with the number of patients who have had malignancies for years who do not have advance care documents,” Dr. Litzow said. “When I have these discussions with patients, I put it into the context of ‘Hope for the best; plan for the worst.’ So, when patients are about to undergo a procedure that can have life-threatening complications, such as transplant, I explain to them that we are working toward a cure, that we will do everything we can to achieve it, but we know that the options we have do carry certain risks.”
All of the clinicians who spoke with ASH Clinical News acknowledged that caring for hematologic patients represents a unique set of challenges. Unlike solid-tumor oncology, where a more thorough integration of palliative care began more than a decade ago, the field of hematologic malignancies often lacks a clear transition from the curative phase to a more palliative phase, Dr. El-Jawahri added. “In many hematologic diseases, the decline at the end of life is rapid and unpredictable, making it harder to know when to initiate end-of-life discussions,” she said.
Comments from hematologists/oncologists in a series of focus groups echoed Dr. El-Jawahri’s concerns.4 Clinicians reported that identifying the end-of-life phase for patients with hematologic cancers was challenging, due to the continuing potential for cure with advanced disease and the often rapid pace of decline near death. This uncertainty often resulted in later initiation of end-of-life care.
Research has also shown that patients and caregivers want to participate in these end-of-life conversations, and that these conversations can affect patient and caregiver quality of life. For instance, a 2008 study published in JAMA showed that patients with advanced cancer who had end-of-life discussions with a physician received less-aggressive medical care near their time of death and were referred to hospice earlier.5 Compared with receiving aggressive care at the end of life, receiving less aggressive care was associated with a lower risk for depression. A longer hospice stay also resulted in improved quality of life for the patient, and, subsequently, better quality of life for the patient’s caregiver.
“Many physicians not trained in palliative care may be hesitant to start these conversations because, when they got into medicine, they did not imagine that helping people to die well from their disease would be one of their main jobs,” Dr. Cripe said. “Understanding that was certainly a major paradigm shift for me.” —By Leah Lawrence
- Center to Advance Palliative Care. About Palliative Care. Accessed October 24, 2016 from www.capc.org/about/palliative-care/.
- Centers for Medicare and Medicaid Services. Proposed policy, payment, and quality provisions changes to the Medicare Physician Fee Schedule for Calendar Year 2016. Accessed October 24, 2016 from www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2015-Fact-sheets-items/2015-10-30-2.html.
- El-Jawahri A, LeBlanc TW, Traeger L, et al. Randomized trial on an inpatient palliative care intervention in patients hospitalized for hematopoietic stem cell transplantation (HCT). Abstract #10004. Presented at the 2016 American Society of Clinical Oncology Annual Meeting, Chicago, IL, June 6, 2016.
- Odejide OO, Salas Coronado DY, Watts CD, et al. End-of-life care for blood cancers: a series of focus groups with hematologic oncologists. J Oncol Pract. 2014;10:e396-e403.
- Wright AA, Zhang B, Ray A, et al. Association between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-73.