Oncologists and health-care professionals who treat patients with high-risk acute myeloid leukemia (AML) are missing important opportunities to have end-of-life discussions at earlier stages in the disease course, when patients are best able to discuss their options and preferences. These findings were presented by Hannah R. Abrams, MD, and colleagues during the 2021 American Society of Hematology (ASH) Annual Meeting & Exposition (Abstract 109). Further, the study, which was highlighted at a press conference during the meeting, showed that palliative care specialists were involved in only 42% of final code transitions, suggesting that future efforts are needed to include palliative care specialists and to have end-of-life discussions that will inform their management.

Hannah R. Abrams, MD

Code Status Transitions Examined

Only 60% of patients participated in their final code status change, a term used to indicate the types of life-saving interventions a patient is willing to receive. The inference is that 40% of patients were too ill to discuss their preferences for end-of-life care that might extend their life (eg, resuscitation, feeding tubes) by the time such discussions occurred, leaving families and clinicians to make these difficult decisions without patient input.

“The code status often reflects a deeper conversation happening between patients and clinicians about what the patient’s goals are. We found that patients and physicians are having these conversations very late in the course of disease. I hope that sharing this study will encourage both clinicians and patients to bring this conversation up earlier, which could help more patients be involved in end-of-life decisions,” said Dr. Abrams, of Mass General Hospital.

The retrospective study was based on health records of 200 patients with high-risk AML enrolled in supportive care studies at Mass General between 2014 and 2021. The researchers wanted to identify the timing and nature of conversations leading to code status changes. Transitions studied were between full code (ie, employ all life-saving measures), restricted code (ie, measures such as do not resuscitate or do not intubate, while continuing routine treatment) and comfort measures only (limited to those that only reduce discomfort).

Overall, 57% (114 of 220) patients experienced a code status transition, with a median of two transitions (range = 1–8) during their course of illness. Median time from diagnosis to first code status transition was 212 days, and from last code status change to death was 2 days.

The vast majority of code status changes occurred during the final weeks of life. More than half of the conversations leading to code status changes occurred when intensive life-sustaining measures were deemed futile, while one in six (about 17%) occurred as preemptive conversations before a major health transition. About one-quarter of these changes occurred in the intensive care unit or emergency department (26.3%).

Dr. Abrams noted that these types of discussions are not built into routine clinic visits earlier in the illness course. Making sure to have end-of-life discussions proactively during routine outpatient visits could help patients understand their prognosis and help clinicians align their treatment strategies with the patient’s wishes and preferences.

These conversations have to happen several times over the course of treatment, since people’s preferences can evolve as they get sicker. “Patients may often feel that they want to re-address this subject with their clinicians, but they are not sure how,” she added.

The study authors concluded, “Almost half of patients were ‘presumed full code’ at the time of diagnosis of high-risk AML and most experienced code status transitions at the end of life focused on futility of life-sustaining therapies after acute clinical deterioration. These results suggest that goals-of-care discussions occur too late in the typical illness course of patients with poor prognosis, high-risk AML. Interventions focused on enhancing patient engagement in timely discussions regarding their end-of-life care preferences are warranted.”

Disclosure: For full disclosures of the study authors, visit ash.confex.com.