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Only a small fraction of patients with acute myeloid leukemia (AML) take advantage of specialty palliative care that aims to improve their well-being and make their final months or years more comfortable. Advocates say this number is far too low, and they're urging hematologists to make referrals more often and far earlier in the disease course.

"Hematologists have a great sense of ownership over addressing the palliative care needs of their patients, and they often have great expertise in managing the physical symptoms associated with treatment and management of AML," Areej El-Jawahri, MD, of Massachusetts General Hospital in Boston, told 乌鸦传媒.

"However, we also know from multiple studies that incorporating specialty palliative care clinicians in the care of patients with AML can provide an extra layer of support for the patients and result in improvement in their quality of life," she added. "Specialty palliative care clinicians have expertise in managing complex physical and psychological symptoms and also in helping patients cope most effectively with their illness and plan for the future."

Studies have shown that patients with AML suffer from unresolved symptoms, anxiety, depression, and overall psychological distress "at a similar, if not worse, rate compared to patients with advanced solid tumors," said Thomas LeBlanc, MD, a hematologic oncologist and palliative care specialist at the Duke University School of Medicine in Durham, North Carolina, in an interview with 乌鸦传媒.

Specifically, patients "often struggle with the shock on initial diagnosis, the urgent need to initiate therapy, and side-effects and toxicities related to therapy including nausea, vomiting, diarrhea, fatigue, and mucositis," El-Jawahri said. "These patients often struggle also with substantial psychological distress including depression, anxiety, and post-traumatic stress symptoms. Both physical and psychological symptoms lead to a deterioration in patient-reported quality of life early in the disease trajectory."

There's also "immense prognostic uncertainty when living with AML," El-Jawahri added, "and these patients often spend a lot of time in the hospital setting. On average, patients with AML spend approximately 50% of their life from diagnosis until death in the hospital setting or clinic, which adds to their social isolation and psychological distress associated with this experience."

Even so, palliative care in patients with hematologic cancers like AML appears to be much less common than in patients with certain other types of cancer. A found that 22.5% of head-and-neck cancer patients received palliative care in 2015, while a reported that 9.6% of patients with solid cancer tumors received palliative care over the period from 2004-2013.

In contrast, El-Jawahri estimated that only 3% to 5% of patients with AML receive palliative care. A found that patients with hematologic cancers as a whole were less than half as likely to receive palliative care or hospice care as those with other cancers (relative risk 0.46, 95% CI 0.42-0.50).

"There are several possible explanations for this finding," the meta-analysis authors wrote, such as "ongoing management by the hematology team and consequent strong bonds between staff and patients; uncertain transitions to a palliative approach to care; and sudden transitions, leaving little time for palliative input."

Even when AML patients do receive palliative care, "in most institutions it is reserved for AML patients who are hospitalized and at the very end of life. We are uncommonly consulted earlier in the course of the disease," said Toby Campbell, MD, a thoracic medical oncologist and chief of palliative care at the University of Wisconsin in Madison, in an interview with 乌鸦传媒.

Another obstacle, LeBlanc said, is that palliative care specialists still face a perception that they're only in the business of helping patients when death is imminent.

"Palliative care is a sophisticated medical specialty that can improve the lives of people with cancer and their families/caregivers," he said. "It's not about death and dying, or dying well, or giving things up, but rather is about living better amid serious illness. It's an extra layer of support to improve the illness experience, regardless of outcome. Therefore, it is appropriate at any age and stage in a serious illness like AML, even alongside potentially curative therapy."

El-Jawahri and LeBlanc have co-written several reports on the value of palliative care in hematologic cancers in general and AML specifically.

In a , they rebutted several common objections to palliative care, such as "patients will think I'm giving up." In fact, the authors wrote, "palliative care can help patients with cancer live better while receiving active treatment and it may allow them to better tolerate effective therapies. We should no longer feel forced to make decisions between chemotherapy and palliative care, as patients often benefit from both, and should be able to receive them simultaneously."

As for the idea that palliative care will rob patients of hope, they write that "the desire to 'preserve hope' does not preclude honest discussions about prognosis or goals of care, nor is it incompatible with palliative care referral. In fact, studies suggest that early palliative care can indeed facilitate a more accurate understanding of prognosis, which does not lead to more anxiety or depression."

In a , El-Jawahri, LeBlanc, and colleagues launched a randomized clinical trial of integrated palliative and oncology care in 160 patients with AML (average age 64, 40% women). Of those, 74 patients received usual care, and 86 received integrated care at four academic hospitals in the U.S. from 2017-2019. In the intervention group, palliative care specialists saw patients at least twice a week during the first and later hospitalizations.

The researchers reported that palliative care led to "substantial improvements" in quality of life, psychological distress, and end-of-life care.

"Palliative care," the authors wrote, "should be considered a new standard of care for patients with AML."

Yet "despite these proven benefits, this model still largely hasn't been implemented at most centers, to my knowledge," LeBlanc said. "Aside from a persistent lack of awareness of these benefits in the hematology community, there also is a significant workforce barrier. There are simply not enough palliative care specialists around and available to see these patients, especially to do so longitudinally in the way that our intervention was delivered in this trial."

For now, he said, "palliative care involvement should at least be standard for patients with AML hospitalized for high-dose chemotherapy. There are probably benefits for patients with AML receiving less intensive therapies and in other care settings too, but those studies are ongoing or yet to be conducted."

If possible, specialist palliative care in AML should be provided at diagnosis, he said, or when needs are unmet.

For her part, El-Jawahri said research supports palliative care in patients with high-risk AML: those over 60 with a new diagnosis and those with relapsed AML after initial therapy. She added that insurance typically covers all palliative care expenses in the inpatient and outpatient settings.

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