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End-of-Life Care for Patients with Blood Cancers Proves Complicated

Neff Newitt, Valerie

doi: 10.1097/01.COT.0000657736.95268.0d
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Hospice is the gold standard of care for patients near the end of life. But patients with blood cancers too often are unable to reap the benefits of that comforting option because of obstacles confronting those suffering from or treating hematologic malignancies.

“Overwhelmingly, the literature has shown that patients with blood cancers are more likely to die in the hospital than in hospice,” said Oreofe Odejide, MD, MPH, Assistant Professor of Medicine at Harvard Medical School and hematologic oncologist at the Dana-Farber Cancer Institute. “So in that way they experience different care—a lower quality of care—near the end of life than patients with solid tumors.”

Thomas LeBlanc, MD, hematologic oncologist, palliative care physician, patient experience researcher, and Associate Professor of Medicine and Population Health Sciences at Duke Cancer Institute, concurred. “The data—internationally, and in all the studies that have been done—very clearly show that patients with blood cancers are far less likely to ever see a palliative care specialist. They're far less likely to use hospice care at all, and when they do, they have much shorter lengths of stay to the point where it's not meaningful use of hospice. So all of those end-of-life quality measures, unfortunately, look worse for blood cancer patients than for solid tumor patients.”

The Prognosis Barrier

Specific barriers, like an unreliable prognosis, are the likely culprits. “Prognostication is never an exact science,” declared Odejide. A lack of exacting accuracy is pronounced in hematologic oncology. “In doing research in this area, we undertook a qualitative study in which we conducted focus groups of hematologic oncologists. One of the key findings that surfaced was they believe it is harder to predict the end-of-life phase for patients with blood cancers than for other cancers,” she explained.

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Without a sense of when the end of life might come, doctors are hesitant to initiate “the talk” that no one wants to have. Odejide made the point that when patients with advanced and/or metastatic solid tumors are diagnosed, they often understand that cure is not likely or even possible. Thus, end-of-life discussions are more timely.

“But patients with some advanced-stage blood cancers are still potentially curable via standard treatment. And for some with relapsed or recurring disease, stem cell transplant offers a chance of long-term remission or a potential for cure,” she said. “So how does a physician figure out when to have a discussion about end-of-life or hospice care?”

LeBlanc added, “Even some blood cancers associated with a relatively poor statistical prognosis stand a chance of cure in some people. So you just don't know what's going to happen to the patient sitting across the room from you. Statistically, they're more likely to be the person who dies within a year or two, but they could be the person who is cured. So we tend to be very aggressive with treatment.”

Acute myeloid leukemia, for example, is associated with a chance at cure with chemotherapy and sometimes bone marrow transplant, LeBlanc noted. However, older patients who are more likely to get this disease tend to be frail.

“And they are more likely to have a version of this disease that's more difficult to treat,” he told Oncology Times. “We often end up giving them ongoing treatments, thinking ‘maybe this one’ is going to get them into remission. But if things go poorly, we've missed the opportunity to get them into hospice care.”

The Transfusion Barrier

Transfusions, though necessary for patients, prove to be another frustrating barrier. Hospice, by traditional definition, means no active treatment is provided. It is a prevailing reason why oncologists are reluctant to refer patients to hospice care. Odejide said hematologic oncologists in her focus group study, as well as others surveyed nationally, voiced concern over the inability to provide transfusions to patients in most hospice settings.

“In the national survey we did, 46 percent of hematologic oncologists said they were concerned that the resources in home hospice may not be adequate for the needs of patients with blood cancers,” detailed Odejide. “About 62 percent said they would refer more patients to hospices if they could have access to transfusions. And at Yale Cancer Center, researchers found that many patients with leukemia who enrolled in hospice and eventually disenrolled did so primarily to get transfusions.”

LeBlanc stressed that, even though patient support delivered by way of transfusions “... is purely a palliative intervention for symptom relief and not active treatment toward cure, most hospice agencies are not able and/or willing to provide transfusion support. As a result, patients don't enroll in hospice until very late, or maybe not at all, because physicians continue their transfusion support until the last possible moment.”

The Distrust Barrier

A third barrier mentioned by LeBlanc points to a lack of available non-hospice palliative care. “I and others have been pushing and arguing for more prognosis-independent upstream palliative care,” he said. “It's an alternative to hospice care where we're not flipping the switch and stopping any kind of treatments, where patients can continue getting chemotherapy, and also have access to palliative care specialists to assist with symptoms and distress, and help improve end-of-life quality of life. Then, if things do not go well, patients already have a relationship with someone who can help negotiate end-of-life issues and help patients stay out of the hospital and transition into hospice instead.”

While such specialists are readily available and can be brought in to confer with patients at any time in their treatment plan, LeBlanc believes “...hematologists themselves lack awareness about what modern specialist palliative care actually is, and how and when to engage it farther upstream from the very end of life.”

He added that hesitance to embrace another specialist may be due, in part, to “... concerns and distrust arising from historical experiences. If you talk to those who have been treating leukemia patients for a number of years, for example, they likely have stories about well-intentioned people caring for their patients in an ICU setting who didn't understand the expected outcomes of aggressive treatment. Often we must bring patients to the brink of death, hold them off the edge of the cliff, and then pull them back in a way that may cure their disease. That difficult balance makes hematologists want to be ‘captain of their ship’ and they sometimes inappropriately exclude consultants, like palliative care specialists, who could be helpful.”

Making Changes

How can the hematologic oncology community improve end-of-life care for patients? Both LeBlanc and Odejide suggested the answer revolves around the quality and timing of end-of-life discussions with patients and their families.

“On the one hand, we're talking to people about actively treating their disease and the possibility of cure, and then on the other hand we're talking about the possibility or even the likelihood they are going to die of this disease. It's a tough thing to do all of that, especially in the course of short visits that are too often the reality of an outpatient practice,” said LeBlanc.

However, physicians must be prepared to juggle all of that, and more. LeBlanc stressed that oncologists need to learn to speak in a language patients will truly understand. “We need to stop using jargon, and stop giving excessive, complicated information. We are not very well-versed in effectively communicating complex numerical risk information to patients and their families,” he detailed. “We know from data that the typical American lay person is not functionally numerate. So, when we tell patients ‘the median 5-year overall survival is 30 percent,’ they may believe it means they personally have a 30 percent chance of 5-year survival. But it's just a population average that doesn't tell patients what is going to happen to them.

“A better way to present this type of information is through an icon array. For example, think of 10 little pills—three are blue and seven are red—lined up in front of the patient. You could say, ‘Three out of 10 people with this disease will still be alive in 5 years. Seven out of 10 will have died before the 5-year mark. It is a guessing game which group you're in.’ This is something they can see and understand.”

LeBlanc went on to suggest, “Oncologists and hematologists really aren't great at communicating overall. We need to slow down. We need to listen. We need to go back to patients the next time we see them in clinic and make sure they understood what was told to them previously. We need to ask open-ended questions about their comprehension of the illness. We tend to view prognostic discussions as one-time events, but really it must be an evolving discussion requiring constant reinforcement, especially as changes occur over time.”

Odejide believes that one of the ways hematologic oncologists can make one-on-one care better for patients is to think about ways to engage in conversations about goals of care in a more timely fashion, and to really understand patients' preferences regarding care near the end of their lives. She said in her survey of 349 hematologic oncologists across the U.S., 56 percent believed these end-of-life discussions occur too late. Furthermore, 23 percent said they only initiate a discussion about hospice when death is clearly imminent.

“In that same survey, we asked about perceived barriers. More than 70 percent said they had concern about taking away a patient's hope,” said Odejide. “It's a natural human emotion; we know these discussions are important. From the people initiating them to the patients engaging in them, they are highly charged. There is tension around the notion ‘if we have this discussion in the phase we're in now, the patient will give up.’ However research does not support that fear. Studies have shown that when these discussions are done empathetically, they actually help patients to prepare and do not necessarily take away their sense of hope.”

In another study, Odejide and team examined medical records to see when the first documented discussion about end-of-life care had occurred with patients, whether hematologic oncologists were present at the discussions, what happened to those patients near the end of life, and whether they were enrolled in hospice more than 3 days before death. They found that when hematologic oncologists were present, patients were less likely to die in hospitals and were more likely to have timely hospice enrollment.

“One of the main conclusions we drew was that hematologic oncologists need to be part of whatever intervention is developed for end-of-life care,” stressed Odejide. “Patients trust them and want them there for big decisions. Having a hematologic oncologist at the first discussion is the most powerful influence on the care patients receive near the end of life; it impacts whether patients enroll in hospice, or instead die in intensive care units. Patients truly want their oncologist's opinions before they say, ‘I'm ready to transition to hospice care.’”

From a broader perspective, oncologists can help improve end-of-care options for patients with blood cancers by becoming more familiar with palliative care specialty medicine and making use of its capabilities, said LeBlanc. They can also push for research and policy changes in terms of tailoring care for patients with blood cancer in hospices, said Odejide. But in the most personal doctor-to-patient relationships, physicians can best help their patients achieve quality of life in their final days by engaging in meaningful conversations earlier during treatment “to really understand their patients' goals, their preferences, and their values so that we can honor them and act on them before it is too late,” Odejide concluded.

Valerie Neff Newitt is a contributing writer.

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