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 palliativecare 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 palliativecare 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 .”

Providing Proof

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 palliativecare interventions resulting in improved coping skills and less depression . “ This