Clinical challenges: palliative care specializing in acute myeloid leukemia

Only a small fraction of patients with acute myeloid leukemia (AML) benefit from specialized palliative care that aims to improve their well-being and make their last months or years more comfortable. Advocates say that number is far too low, and they urge hematologists to make referrals more often and much earlier in the course of the disease.

“Hematologists have a great sense of belonging to meet the palliative care needs of their patients, and they often have great expertise in managing the physical symptoms associated with the treatment and management of AML,” Areej El-Jawahri , MD, of Massachusetts General Hospital in Boston, said MedPage today.

“However, we also know, from numerous studies, that integrating palliative care clinicians into the care of patients with AML can provide an additional layer of support to patients and improve their quality of life,” a- she added. “Palliative care clinicians have expertise in managing complex physical and psychological symptoms and also helping patients cope more effectively with their disease and plan for their future. “

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

Specifically, patients “often struggle with the shock of the initial diagnosis, the urgent need to start treatment, and the side effects and toxicities associated with treatment, including nausea, vomiting, diarrhea, fatigue and mucositis. “Said El-Jawahri. “These patients often experience significant psychological distress, including depression, anxiety, and symptoms of post-traumatic stress disorder. The physical and psychological symptoms lead to a deterioration in the quality of life reported by patients early in life. disease trajectory. “

There is also “immense prognostic uncertainty when living with AML,” El-Jawahri added, “and these patients often spend a lot of time in hospital. On average, patients with AML spend about 50% of their time. their life from diagnosis to death in a hospital or clinic setting, 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 recent analysis found that 22.5% of head and neck cancer patients received palliative care in 2015, while a 2018 study reported that 9.6% of patients with solid cancer tumors received palliative care during the period 2004-2013.

In contrast, El-Jawahri estimated that only 3-5% of patients with AML receive palliative care. A Meta-analysis 2011 found that patients with hematologic cancers as a whole were less than half as likely to receive palliative care or palliative care than those with other cancers (relative risk 0.46, 95% CI 0.42-0 , 50).

“There are several possible explanations for this result,” wrote the authors of the meta-analysis, such as “the continued management by the hematology team and the resulting strong bond between staff and patients; uncertain transitions to a palliative approach to care; and sudden transitions, leaving little time for palliative intake. “

Even when AML patients receive palliative care, “in most settings it is reserved for AML patients who are hospitalized and at the very end of their life. We are rarely seen earlier in the illness, ”said Toby Campbell, MD, a thoracic medical oncologist and head of palliative care at the University of Wisconsin at Madison, in an interview with MedPage today.

Another barrier, said LeBlanc, is that palliative care specialists always feel like they’re only there to help 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 dying and dying, or dying well, or giving up, but rather living better in the midst of serious illness. It’s an extra layer of support to enhance the experience of disease, regardless of the outcome. Therefore, it is appropriate for any age and stage of serious disease like AML, even in conjunction with potentially curative treatment. “

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

In one 2015 paper, they refuted several common objections to palliative care, such as “patients will think I give up.” In fact, the authors wrote, “Palliative care can help cancer patients live better lives while receiving active treatment and can make them more tolerant of effective therapies. We should no longer feel that we have to choose between chemotherapy and palliative care, because patients benefit from both and should be able to receive them simultaneously. “

As for the idea that palliative care robs patients of hope, they write that “the desire to ‘preserve hope’ does not preclude honest discussions about prognosis or goals of care, and is not nor incompatible with referral to palliative care. In fact, studies suggest that early palliative care may indeed facilitate a more accurate understanding of prognosis, which does not lead to more anxiety or depression. “

In one study 2020, El-Jawahri, LeBlanc and their colleagues initiated a randomized clinical trial of integrated palliative and oncology care in 160 patients with AML (mean age 64 years, 40% female). Of these, 74 patients received usual care and 86 received integrated care at four teaching hospitals in the United States from 2017 to 2019. In the intervention group, palliative care specialists saw patients at least twice a week during the first and subsequent hospitalizations.

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 viewed as a new standard of care for patients with AML. “

Yet, “despite these proven benefits, this model still has not been implemented in most centers, to my knowledge,” said LeBlanc. “Along with a persistent lack of awareness of these benefits in the hematology community, there is also a significant workforce barrier. intervention was delivered in this trial.

For now, he said, “participation in palliative care should at least be the norm for AML patients hospitalized for high-dose chemotherapy. There are likely benefits for AML patients. receiving less intensive therapy and in other care settings as well, but these studies are ongoing or yet to be conducted. “

If possible, palliative care specializing in AML should be provided at the time of diagnosis, he said, or when needs are not met.

For his part, El-Jawahri said the research supports palliative care in high-risk AML patients: those over 60 years of age with a new diagnosis and those with recurrence of AML after initial treatment. She added that the insurance generally covers all expenses for inpatient and outpatient palliative care.

  • Randy Dotinga is a San Diego-based freelance medical and science journalist.


Campbell and El-Jawahri have no disclosure.

LeBlanc disclosed support from AbbVie, Agios, AstraZeneca, Amgen, Astellas, BMS / Celgene, Carevive, Flatiron, Pfizer, Seattle Genetics, American Cancer Society, Duke University, Jazz Pharmaceuticals and NIH / NINR.

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