A new study presented at ASH 2021 focusing on older adults with high-risk AML suggests clinicians and patients are missing opportunities to have conversations about end-of-life decisions at an early stage when patients are best equipped to discuss their options and preferences, rather than waiting until they are in the midst of a health crisis.

Researchers found that only 60% of patients participated in their final code status change, a term used in health care settings to indicate the types of life-saving interventions a patient wishes to receive.

This suggests that 40% were too ill to indicate their preferences about receiving life-extending measures such as resuscitation by the time the conversations occurred, leaving families and clinicians to make these critical decisions without guidance from the patient.

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

The researchers analyzed the health records of 200 patients with high-risk AML to identify the timing and nature of conversations leading to code status changes.

Researchers assessed transitions between full code (indicating all life-saving measures should be employed), restricted codes (such as do not resuscitate or do not intubate, which specifies the avoidance of certain measures while continuing routine treatments), and comfort measures only (limiting interventions to those intended to reduce discomfort).

The results showed the vast majority of code status changes occurred during the final weeks of life, with a median of just two 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, while just one in six were pre-emptive conversations held before a major health transition.

“It’s a hard thing to talk about, and it’s not built into our clinic visits to talk about this earlier in a patient’s course with AML,” Dr. 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, Dr. Abrams noted, adding that it’s also important to have the conversation multiple times, since patients’ views and goals can change as their disease progresses. “Patients often may feel they want to readdress this with their clinicians, but they’re not sure how,” she said.

The study also found that palliative care specialists were involved in just 42% of final code transitions, suggesting future efforts could focus on ensuring optimal access to palliative care for people with high-risk AML. 

Source: American Society of Hematology (ASH)