Study Shows Need for Earlier Conversations About End-of-Life Care With Patients Who Have High-Risk AML

A study of older adults with high-risk acute myeloid leukemia (AML) reveals the missed opportunities for doctors to start end-of-life conversations when patients can still understand their options and express their wishes.1

The results, presented during the 2021 American Society of Hematology Annual Meeting and Exposition in Atlanta, GA, comes 6 years after the Institute of Medicine report, Dying in America, found that most clinicians fail to initiate conversations with patients about their end-of-life preferences, especially if patients are poor, young, or have less education.2 The need for better medical education in this area has received more attention over the past decade, but gaps remain.3

In the new study, investigators from Massachusetts General Hospital found that only 60% of patients with AML took part in their final change of code status, which is the term used in hospitals or other health care settings to show whether life-saving interventions will be given. According to the results, this suggests 40% of the patients were too ill to take part in discussions about their own end-of-life care.

This leaves families and clinicians to make choices about resuscitation or other measures without the patient’s participation, said study author Hannah R. Abrams, MD, of Massachusetts General Hospital.

“The code status often reflects a deeper conversation happening between patients and clinicians about what the patient’s goals are,” Abrams said. “We found that patients and physicians are having these conversations very late in the course of disease.”

For this study, investigators examined health records for 200 patients with high-risk AML treated at 2 academic medical centers to identify the timing and nature of conversations leading to code status changes. Records were obtained from the period 2014 to 2021; high-risk AML was defined as either relapsed or refractory AML or newly diagnosed in patients at least 60 years of age. Researchers assessed transitions between full code, which calls for all life-saving measures to be taken; restricted codes, including “do not resuscitate,” or “do not intubate,” which bar certain measures only, and comfort measures only.

Among the patients, 86.0% were “full code,” and 8.5% had restrictions on life-sustaining therapies. Overall, 57% experienced a code status transition, with a total of 206 transitions across the group. The median time from diagnosis to the first code status transition was 212 days; most code changes took place in the final weeks of life, with a median of 2 days between the last code change and a patient’s death. More than half of the conversations leading to code status changes occurred when intensive life-sustaining measures were deemed futile and were transitions to comfort measures, while just 1 in 6 were pre-emptive conversations held before a major health transition (15.6%). Two other processes that led to conversations were: anticipatory conversations at the time of acute clinical deterioration (32.2%), and futility conversations after acute clinical conversations, focused on withdrawing life-sustaining therapies (51.0%).

Both older age and receipt of non-intensive chemotherapy were associated with a shorter period from the last code status transition to death, compared with pre-emptive or anticipatory conversations. Investigators found that “a substantial minority” of the final code status transitions took place in the intensive care unit or emergency department (26.3%).

“It’s not built into our clinic visits to talk about this earlier in a patient’s course with AML,” Abrams said. Having these conversations pre-emptively during routine outpatient visits could help ensure patients have an accurate understanding of their prognosis and help clinicians align treatment strategies with the patients’ goals and preferences, she said. It is also important to have these discussions with patients more than once, because patients’ attitudes can shift as their disease progresses.

Investigators found that palliative care specialists were involved in just 42% of final code transitions, pointing to an area of need for people with high-risk AML.

Sharing these data could lead to both clinicians and patients starting these conversations much earlier, allowing patients to be more involved in their own end-of-life care, she said.


  1. Abrams HR, Nipp RD, Traeger L, et al. Code status transitions in patients with high-risk acute myeloid leukemia. Presented at: 63rd American Society of Hematology Annual Meeting and Exposition; December 11-14, 2021; Atlanta, GA. Abstract 109.
  2. IOM (Institute of Medicine) Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington (DC): National Academies Press; 2015.
  3. Sutherland R. Dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations. Yale J Biol Med. 2019;92(4):757-764.