Conversations about goals of care often occur too late in high-risk AML
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Goals-of-care discussions often occur too late for patients with poor-prognosis, high-risk acute myeloid leukemia, according to study results presented at ASH Annual Meeting and Exposition.
More than half of all code status transitions occurred in the last 2 weeks of life.
Only 60.5% of evaluated patients participated in their final code status change, which outlines a person’s care goals and the life-saving interventions he or she wishes to receive. In the other 39.5% of cases, patients’ families and health care providers made these decisions.
The results highlight the need for interventions to ensure conversations about end-of-life decisions occur earlier when patients are better equipped to review options and share their preferences, researchers concluded.
“I hope that patients, families and clinicians take this as an opportunity to address and think about code status earlier on, before patients become too ill to participate in discussions,” researcher Hannah Abrams, MD, internal medicine resident at Massachusetts General Hospital, told Healio.
Patients with high-risk AML often require intensive medical care at the end of life, with one study showing 30% received ICU care within 30 days of death.
“Despite this, we know that patients and clinicians often have different understandings of prognosis, and that patients and families feel rushed in making decisions at the end of life,” Abrams said. “We wanted to understand how and when conversations about end-of-life care are occurring in the hopes of identifying where we could improve communication between patients, clinicians and families about end-of-life care in AML.”
Abrams and colleagues conducted a mixed-methods study that included 200 patients with high-risk AML who had been enrolled in supportive care studies conducted at Massachusetts General Hospital from 2014 to 2021. The high-risk population consisted of individuals with relapsed or refractory disease, or those aged 60 years or older with newly diagnosed disease.
During the study, two physicians performed consensus-driven medical record review to examine code status transitions between time of diagnosis and death, as well as the involvement of patients, their families and palliative care providers.
Researchers characterized code status as “full,” meaning all life-saving measures should be employed; “restricted,” such as do not intubate or do not resuscitate; and “comfort measures only,” which limits interventions to those designed to minimize discomfort.
Investigators utilized logistic regression to determine associations between patient factors or code status discussion features and the time between last code status transition and death.
Upon diagnosis of high-risk AML, the majority (86%) of patients were classified as “full code” (47.5% confirmed and 38.5% presumed), meaning they would receive intubation and cardiopulmonary resuscitation if those measures were warranted. Another 8.5% had restrictions on life-sustaining therapies.
Researchers identified 206 code status transitions in the cohort.
More than half (57%) of patients experienced a code status transition (median, 2; range 1-8) during the course of their illness.
Most code status changes occurred in the final weeks of life, results showed.
A median 212 days (range, 7-4,507) elapsed from time of diagnosis to first code transition. However, a median 2 days (range, 0-350) elapsed from last transition to death, and nearly three-quarters (71.1%) of the final code status transitions were to “comfort measures only” near the end of life.
Fewer than two-thirds (60.5%) of patients who underwent a code status transition were able to be involved in their final transition, primarily due to degree of illness.
“Fewer than half of all final code status transitions included both patients and families alone,” Abrams said. “Frequently, families were being asked to make these decisions without the input of their loved ones.”
About one-quarter (26.3%) of last code status transitions occurred in the ED or ICU.
Researchers identified three types of conversations that led to code status transition. More than half (52%) of conversations that led to code status changes occurred after acute clinical deterioration and life-sustaining measures were determined to be futile.
A third (32.2%) were anticipatory conversations at the time of acute clinical deterioration. Only 16% were preemptive conversations that occurred prior to a major health transition.
Abrams said she was surprised that more than half of all transitions occurred in the last 2 weeks of life, and that nearly 40% of patients were not involved in their final transitions.
“Both of these findings really underscored for me how late in life these changes are occurring and how rushed patients and families must feel making these challenging decisions at the end of life,” Abrams said.
Futility conversations appeared associated with shorter time from last code status transition to death (beta coefficient, – 2.84; P < .001) than anticipatory or preemptive conversations.
Two factors — older age (beta coefficient = 0.07; P < .001) and receipt of nonintensive chemotherapy (beta coefficient, 1.41; P = .003) — appeared associated with longer time from last code status transition to death.
The findings show patients, their families and clinicians are not discussing code status early enough in the illness course, Abrams said.
Having these conversations preemptively during routine outpatient visits can increase the likelihood that patients have an accurate understanding of their prognosis, Abrams said. Clinicians then can better align treatment choices with the patients’ preferences and goals, keeping in mind those may change as a patient’s disease progresses.
“The most important thing we as a system can do to support these conversations is build more time for them in clinic schedules, to allow for more nuanced conversations to occur in the outpatient setting when patients are with the person who knows them best,” Abrams told Healio. “For clinicians — particularly when clarifying code status at the time of admission to the hospital — I think the key finding is that we should not presume code status for these patients with high-risk AML, because they are at a high risk of needing intensive care during their course.”
Abrams also emphasized that younger patients appeared more likely to have rapid transitions between being full code and end of life.
“While often this may be concordant with their goals going into therapy, this may be a group of patients who would benefit from more preemptive discussion of end-of-life care goals and prognosis,” Abrams said.
Perspective
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Douglas Tremblay, MD
This study is not surprising given the nature of AML, where clinical status can evolve rapidly, leading to starkly different short-term prognosis. In other words, many patients will be doing well clinically and receiving potentially curative therapy, but then have a significant medical event — such as an infection — that will result in a grim prognosis.
This research serves as a reminder that code status and goals of care should be part of the discussion early in the treatment course of AML. Future studies should focus on interventions that facilitate that discussion.
Perspective
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Martin S. Tallman, MD
Although there have been many advances in the treatment of AML — and even significant progress among high-risk patients — end-of-life issues often have been a neglected area.
This study indicated a change in code status — a directive whether everything medically should be done in case of acute deterioration — only occurred for about 50% of patients during their illness, and they occurred late in the disease course. Further, only 60% of patients participated in their last code status change. This suggests goals-of-care issues should be discussed earlier in the course of disease, and that encouraging patient engagement in these discussions should be a goal.
These results are all the more important with the continued development of new therapies, for which patients and clinicians must balance potential benefits with quality of life.
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Abrams HR, et al. Abstract 109. Presented at: ASH Annual Meeting and Exposition; Dec. 11-14, 2021; Atlanta.
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