When the Centers for Medicare and Medicaid Services (CMS) finalized its payment schedule for advanced-care planning in November, establishing separate payment for these discussions and services,1 the response among the palliative-care community was likely a resounding, “Finally!”
The action recognized the time that practitioners spend conducting advanced-care conversations, and is expected to encourage discussions among physicians, patients, and caregivers about supportive and end-of-life care.
While the intended audience of the payment ruling were specialties that have more formally integrated palliative care systems into general treatment protocols – solid tumor oncology and intensive care, for instance – its effect on the treatment of patients with hematologic malignancies remains to be seen.
Historically, integrating palliative care into this segment of hematology has been a struggle, for a variety of reasons, according to experts who spoke with ASH Clinical News.
Better Living Through Palliative Care
“With patients with hematologic malignancies, the natural history of their disease is a bit different,” explained Anthony Back, MD, professor in the Department of Medicine, division of oncology, at the University of Washington in Seattle, Washington. “Solid-tumor patients will generally experience a slow decline, where it eventually becomes evident on a functional level that they are weakening.”
For patients with hematologic malignancies, however, the decline is less obvious, leading some hematologists to choose to continue active treatment, Dr. Back explained. “These patients will continue to receive anti-cancer treatments or blood products very close to the end of life. Most hematologists agree that palliative care offers some benefits, but believe they are short-lived, so their first instinct is to just go with more or different anti-cancer treatments.”
Another concern? Turf issues. “My [hematology] colleagues tend to assume that palliative care specialists are going to take their patients away,” added Thomas LeBlanc, MD, cell therapy and hematologic malignancies specialist, hematologist, medical oncologist, and palliative medicine specialist at Duke Medicine in Durham, North Carolina. “Hematologists need to know that palliative care is not about the end of life for the patient – it’s about living a better life even while living with cancer.”
Hematology’s outlook on palliative care is slowly changing. First, researchers have begun documenting the barriers to palliative care that the hematology community needs to overcome to move forward with the practice. In addition, for the first time, this year’s ASH annual meeting will feature an Education Program session devoted solely to palliative care in hematologic malignancies, chaired by Dr. LeBlanc.
Palliative care can be helpful to physicians and patients on many fronts: symptom management (including severe or refractory symptoms); supporting family caregivers; helping patients with anxiety, depression, and mood-related issues; and transition of care upon relapse, Dr. LeBlanc pointed out.
Perceptions and Misperceptions
According to Douglas Brandoff, MD, co-director of the Palliative Care Clinic at the Dana-Farber Cancer Institute in Boston, however, many people might have the wrong impression of exactly what palliative care entails.
“At one end of the spectrum, there are patients who say, ‘Palliative care? What’s that?’ And at the other end of the spectrum are people who hear ‘palliative care’ and think ‘death panels,’” Dr. Brandoff said. “There’s a very rich, fertile middle ground with palliative care and an incredible amount of value that we can add when we provide palliative care upstream.”
One of the fundamental issues preventing greater upstream use of palliative care in hematologic malignancies is an incorrect understanding of what palliative care is, according to Dr. LeBlanc. Historically, blood cancer specialists have judged palliative care as being synonymous with hospice, but the latter is just a small part of an array of options.
“Palliative care is specialized medical care for patients with serious illness,” Dr. LeBlanc explained. “It can be provided at any stage of care, even along with active cancer treatment. It’s not just end-of-life care, and that’s the fundamental disconnect for hematologists.”
Engaging in palliative care in no way means that the hematologist is giving up on the patient, though that may be the perception, he added. Often, clinicians will perpetuate their misunderstanding of palliative care to their patients and avoid the conversation entirely.
Bronwyn Long, RN, DNP, MBA, a palliative care and oncology clinical nurse specialist and the cancer center program coordinator at National Jewish Health in Denver, Colorado, recounted that she often gets the same reaction from patients and physicians when it comes to palliative care.
“I’ll watch patients’ body language when I ask them about palliative care to gauge their reaction. If they sit back and pull away from me, I know they think I’m talking about hospice,” she said. “And some physicians react the same way when I ask if a certain patient might be a candidate for palliative care. Sometimes their response is simply, ‘My patient’s not dying!’”
One of the goals of the “Palliative Care in Hematologic Malignancies” session at this year’s annual meeting is clarifying that palliative care does not represent the end of the line for patients, Dr. LeBanc stressed. “Palliative care is an additional layer of support to help people live better lives for as long as they can,” he said. “It is not an ‘either-or’ prospect; it has to be ‘and-with’.”
That means that patients are still able to receive active cancer treatment while also receiving palliative care.
Overcoming the Barriers to Better Palliative Care
In 2014, researchers from the Dana-Farber Cancer Institute conducted four in-house focus groups among the staff hematologists to get a better idea of how hematologists view end-of-life (EOL) care and the barriers to provide EOL care.2
Of the 20 hematologists included, all agreed that pinpointing the “EOL phase” of blood cancers was challenging. “Participants in the leukemia, lymphoma, and hematopoietic stem cell transplantation groups specified that the possibility of cure for many hematologic malignancies, even in relapsed states, made it difficult to prospectively determine when the EOL phase of disease begins,” the authors wrote.
The published paradigms for identifying EOL (a life expectancy of <6 months) also can be difficult to apply in blood cancers, where changes in disease status can be sudden and hard to predict.
Finally, they noted that “unrealistic patient expectations” can hamper EOL care, especially when patients insist on care that clinicians know to be futile.
But those expectations may not be as much of a hurdle as physicians assume, Dr. LeBlanc said, especially since many people have no knowledge of palliative care – up to 70 percent, according to data from the Center to Advance Palliative Care (CAPC).3
“Patients don’t necessarily have a negative perception about palliative care because they don’t know what it is and don’t have enough information to form an opinion,” he said. “It’s more likely the clinician who has a basic misunderstanding.”
The Sooner the Better
To that end, all of the clinicians we spoke with stressed the importance of integrating palliative care in the treatment protocol sooner, rather than later. It’s what Dr. Brandoff referred to as “upstream involvement,” and Dr. Back called providing “a softer landing.”
Initiating the palliative care conversation early on can make it more comfortable for everyone, Dr. Brandoff noted, rather than an abrupt introduction down the line that can spook patients and family members. He advocated taking a step back to assess the whole patient.
“One size doesn’t fit all when it comes to a palliative care strategy,” Dr. Brandoff said. “It’s helpful to approach patients in a way that’s reflective, exploratory, curious, inviting, and somewhat open-ended. Ask yourself, ‘Who is this fellow human being in front of me? Who was he or she prior to the diagnosis? How has that changed since learning of the diagnosis and getting treatment? What is the person’s understanding of the illness at the current point? What are his or her hopes, values, and goals moving forward?’” (For more tips on “How to Talk to Patients,” see the SIDEBAR.)
As for the soft landing, Dr. Back pointed out that palliative care is not intended to rob patients of the chance to receive anti-cancer treatments. But when the time comes that treatment is no longer deemed effective, then having the palliative-care team in place can make the transition to EOL less daunting.
Dr. LeBlanc agreed, emphasizing again that palliative care can be a facet of standard treatment. He cited two studies that have demonstrated the benefits of early palliative care in cancer patients.
In one, patients with newly diagnosed metastatic non-small-cell lung cancer were randomized to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone.4 Patients assigned to early palliative care had a better quality of life (QOL) compared with those who received standard care, along with less depression and a longer median survival – despite receiving aggressive EOL care.
In a second study, early palliative care in patients with advanced cancer led to improvements in a variety of outcomes, such as QOL and satisfaction with care compared with standard care.5
Although these studies were done in solid tumor patients, the lessons still apply, Dr. LeBlanc said. “Everyone tends to assume that palliative care is what you do when you can’t do more treatment, but introducing palliative care early has two main benefits: It can used along with, not instead of, active cancer treatment and it can help establish a relationship between the patient and the palliative-care specialists.” The transition to EOL care, then, seems less jarring.”
Providing a Cure at Any Cost?
The unique circumstances of treating hematologic malignancies also presents challenges to better integrating palliative care in this setting.
In the last 30 days of life, patients with hematologic malignancies are likely to undergo “aggressive” care including admission to intensive care, chemotherapy, and targeted therapy, compared with patients with solid tumors, according to a 2014 study, indicating “a relative lack of palliative care involvement in hematologic patients.”6
That finding didn’t come as a surprise to Dr. Back. “I used to work with patients with end-stage lymphoma who needed platelet transfusions,” he said. “I would tell them that they should receive platelet transfusions until they were too weak to come in and then get them as an outpatient, because, at that point, this treatment is not going to help them and they would be wasting too much energy.”
However, that’s not a common approach, he added. “Physicians would typically have the patient continue to come to the hospital for platelet transfusions. The risk there is that the patient ends up dying in the hospital, which may not have been what the patient wanted.”
That drive to cure, despite what the patient may want for his or her life, can stymie open communication between physicians and patients about palliative care. It is an area where hematologists may want to consider conversing with patients before moving forward.
Ms. Long suggested that physicians kick off the conversation by establishing the goals of care. “Ask the patient what he or she hopes for, and then ask what he or she worries about. The answers can give you a better perspective on what the expectations are.”
She also cautioned that patients may have to hear the same information more than once. “More often than not, patients are hoping for a cure, regardless of what the doctor or the nurse has told them about the prognosis,” she said. “If they express the belief that they are going to be the one person who can beat the disease, that clues me in as a nurse educator that I need to circle back and reiterate previous information.”
Initiating the conversation can, understandably, be difficult for hematologists because, Dr. Back noted, many hematologists may fear that anything short of curative intent is akin to abandonment.7
“Hematologic malignancy specialists often work with patients for years from diagnosis, through treatment, through recurrence, before and after transplant,” he said. “They have a deep commitment to these patients, and when they are unclear as to what palliative care practices may be they may want to revert to their typical approach – the most aggressive treatment a patient can handle.”
Dr. Brandoff added that communication between the physician and patient cannot be a one-way street. “Even the most confident patient will be startled if there is a marked change in tone, content, and style, in terms of their interaction with their doctor,” he said. “Take the time to step back and check in.”
However, because the clinical status of a patient with a hematologic malignancy can turn on a dime, this time might not be possible. So, Dr. Brandoff recommends investing in palliative care discussions along the patient’s treatment course; then, when treatment changes need to happen quickly, “you can tap into that investment you developed over time.”
Keeping the Conversation Going
Despite anecdotal evidence and a vote of confidence in the form of CMS’ recent ruling, a lack of published data on the potential value of palliative care in malignant blood cancers remains a major roadblock to its integration.
Clinical trials specifically examining palliative care in hematology are scarce, Dr. LeBlanc said, but studies by the Project ENABLE (Educate, Nurture, Advise Before Life Ends) program are providing evidence about the benefit of palliative care in patients with advanced cancer.8,9 ENABLE I and ENABLE II investigated whether an intervention offering more support for families and caregivers, addressing patients’ emotional and spiritual needs, and enhancing clinician and patient/family communication could improve patient experience and access to hospice and palliative care services. In each trial, the program increased use of palliative care services, which was, in turn, associated with better QOL and mood; it was not, however, associated with reductions in hospitalized days or need for critical care.8,9
Subsequently, the ENABLE III trial investigated the optimal timing of palliative care and its impact on QOL, symptom impact, mood, one-year survival, and resource use among patients with advanced cancer.9 Earlier introduction of palliative care led to improved survival, but the authors noted that “understanding the complex mechanisms whereby palliative care may improve survival remains an important research priority.”
Just when these research efforts will come to fruition remains uncertain. “At this juncture, I would be very happy if we could just add palliative-care clinicians to blood cancer teams and start experimenting on a very small scale,” Dr. LeBlanc said. “We need to figure out when that specialist is most helpful and how we can maximize the benefit of adding that person to the team.”
In the meantime, hematologists who treat blood cancers can still glean valuable direction from studies involving solid tumor patients. “There really are not enough role models in hematology to base practice on,” Dr. Back conceded. “But in the absence of that, why not look to solid tumors for an outline of a system that can provide value? Maybe when we apply that system, it will allow us to give the most aggressive treatment, as long as the patient can manage it, but then pivot into appropriate palliative care when necessary.”
One of the great success stories with palliative care in solid tumors is symptom management, Ms. Long added. The reality is patients are fairly miserable during treatment and the stress of that may play a role in the effectiveness of the therapy.
“If I can focus on helping the patient feel better – better pain control, less nausea, improved appetite – and maintain his or her QOL, it allows a space for the treatment to work,” she said. “I tell patients: ‘I can’t answer the big, long-term questions about your disease for you, so let’s work on the small stuff and try to make your day a little better.’ That would benefit all patients, regardless of their disease.”—By Shalmali Pal
- Centers for Medicare and Medicaid Services. Proposed policy, payment, and quality provisions changes to the Medicare Physician Fee Schedule for Calendar Year 2016. Accessed November 2, 2015 from www.cms.gov/Newsroom/MediaReleaseDatabase/Fact-sheets/2015-Fact-sheets-items/2015-10-30-2.html.
- Odejide OO, Coronado Salas 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:e396-403.
- Center to Advance Palliative Care. 2011 Public opinion research on palliative care: a report based on research by public opinion strategies. Accessed November 3, 2015 from https://media.capc.org/filer_public/18/ab/18ab708c-f835-4380-921d-fbf729702e36/2011-public-opinion-research-on-palliative-care.pdf.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363:733-42.
- Zimmerman C, Swami N, Krzyzanowska M, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014;383:1721-30.
- Hui D, Didwaniya N, Vidal M, et al. Quality of end-of-life care in patients with hematologic malignancies: a retrospective cohort study. Cancer 2014;120;1572-8.
- Back AL, Young JP, McCown E, et al Abandonment at the end of life from patient and clinical perspective: Loss of continuity and lack of closure. Arch Intern Med. 2009;169:474-9.
- Bakitas M, Lyons KD, Hegel M. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009;302:741-9.
- Bakitas MA, Tosteson TD, Li Z, et al. Early versus delayed initiation of concurrent palliative oncology care: patient outcomes in the ENABLE III randomized controlled trial. J Clin Oncol. 2015;33:1438-45.
ASH Clinical News asked for some basic “dos and don’ts” when discussing palliative care with patients. Here’s what Drs. LeBlanc, Back, and Brandoff, and Ms. Long, shared:
- Do use expert consultation. If you are treating a leukemia patient who has complicated cardiac issues, you won’t hesitate to consult with the cardiologist. Palliative care is the same – these are trained specialists with unique skills so we shouldn’t feel a sense of failure because we had to call them in.
- Don’t be apologetic about discussing palliative care. Sometimes when physicians are uncomfortable with a topic, we hem and haw and beat around the bush. By the time you get to the point, patients are left wondering why their doctor is even bringing it up.
- Do consider what patients want at the end of life. When additional treatment is not likely to be of benefit, perhaps we don’t need to worry about issues like “Is their platelet count going to be high enough? Is their hematocrit going to be high enough?” Focus more on where the patients really want to be at the end of life.
- Don’t bombard patients with data. Doctors sometimes miss when patients are emotional because they are basically in a state of shock. It is important to notice that, acknowledge it, and pause before giving them information. This gives patients time to process what they’ve been told, and it will ultimately save the physician time because the patient will retain more of the information.
- Do check in with patients on a regular basis. If patients are in the middle of treatment, ask how they are feeling, if they feel that the regimen has helped them, what the difficulties are. “What did you take from that experience and how would you apply it to future decisions making?” Our goal is to determine how the available treatments match up with what that person is looking for in terms of his or her goals and values.
- Don’t change gears abruptly on patients. At the point where there won’t be any further cancer-directed therapy, emphasize that palliative care is really a change in the direction of care. So, chemotherapy may no longer be an option, but there is the possibility of transfusion, pain management, or intensive psychosocial care. It’s really about shifting gears, not shutting down care.
- Do consider home-based palliative care. We do home palliative care in our practice because it makes the transition to hospice less scary. Physical therapy is typically the “gateway” service and we then introduce the palliative care nurse. As a patient is introduced to each member of the palliative care team, the idea of it becomes less alarming.
- Do consider reaching out to retired physicians. I say this from experience. Maybe you know a retired hematologist who doesn’t want to practice medicine anymore but who would still like to be involved. They have the background to see both the patient and the physician’s viewpoint.
Playing to Win
By definition, palliative care is an interdisciplinary field. Of course, access to any palliative care will vary depending on the setting (i.e., community versus academic, rural versus urban), but ASH Clinical News asked the experts to build their “dream team” for palliative care in hematologic malignancies. Here are the specialties that they’d want by their side:
- Complementary/alternative medicine specialist
- Hematologist specializing in hematologic malignancies
- Hematologist specializing in bleeding and clotting
- Hospice representative
- Nurses (palliative, oncology, infusion, bedside)
- Nurse practitioner and/or physician assistant
- Palliative care specialist
- Personnel from transfusion blood bank
- Social worker
- Spiritual guidance counselor
- Transplant specialist