Patients with high-risk acute myeloid leukemia (AML) often had code change status transitions occur very near the end of life, according to a recent study in Blood Advances. Previous research has shown there isn’t much time between when patients receive key prognosis information and have to make subsequent major decisions about treatment and end-of-life care, such as cardiopulmonary resuscitation (CPR) and intubation. This affects the patient’s ability to process and make informed decisions and can lead to distress for patients and their family members.
“Over half of all code status transitions happened in the last two weeks of life,” said study author Hannah R. Abrams, MD, of Massachusetts General Hospital. “This matters because it means that patients and their families are getting less time to talk about and cope with these changes. Oftentimes, so near the end of life, patients are too sick to be awake for these conversations, and so families are having to make these decisions alone.”
For the study, patients with relapsed or refractory AML as well as those diagnosed at age 60 or older were included. Patients were identified and code status was reviewed with electronic health records. A total of 200 patients with high-risk AML participated, and median patient age was 70.
At diagnosis, 86.0% of patients were “full-code,” which lets their care team know they want to undergo CPR or intubation (mechanical ventilation) to attempt to keep them alive during critical illness. Of these, 38.5% were presumed full-code and 47.5% were confirmed full-code. There were restrictions on life-sustaining therapies for 8.5% of patients.
“These transitions help us understand how a patient is thinking about end-of-life issues and what their goals for their care are,” Dr. Abrams explained. “For example, an elderly patient with advanced cancer may elect to be ‘do not resuscitate/do not intubate’ (DNR/DNI) because CPR is most effective in bridging through a reversible cause of cardiac arrest, and if that patient’s heart were to stop it would likely be due to an irreversible cause. For them, the potential pain of chest compressions may be less preferable to dying with pain medications available and family surrounding them.”
In all, 57.0% of patients experienced a code status transition during the study period, with a median time of two days from last transition to death. The majority of transitions (71.1%) were to comfort measures near end of life. According to Dr. Abrams, this is typically a shift in treatment plans to only include interventions that will improve the patient’s quality of life, like medications for pain, nausea, and anxiety, rather than medications aimed at prolonging their life, like chemotherapy or antibiotics. Families were involved in 87.7% of these transitions, whereas patients were involved in only 60.5%.
The researchers identified three conversation types that led to code status transitions: information conversations focusing on futility after clinical deterioration (51.0%), anticipatory conversations at the time of acute deterioration (32.2%), and preemptive conversations prior to deterioration (15.6%).
Shorter time from last transition to death was associated with younger age (p=0.002) and informative conversations (p<0.001).
Researchers reported several study limitations. First, the study was conducted at a tertiary care center with a mostly white, highly educated population, so results may not be generalizable across other populations or care settings. In addition, researchers noted that end-of-life communication may have been affected by the limited racial, ethnic, and religious diversity in the study population. Finally, data were derived from the electronic health record, which may not reflect all conversations between patients and clinicians and may also have a limited capacity to capture the nuances of code status conversations.
“I hope that our study helps more patients and caregivers learn about these concepts and discuss them early on,” Dr. Abrams said. “Caregivers sometimes describe an immense burden from having to make these decisions when their loved ones are too sick to participate. Having had a discussion beforehand about what you would want the end of life to look like can ease much of that burden and help patients regain a sense of choice.”
Any conflicts of interest declared by the authors can be found in the original article.
Abrams H, Nipp R, Traeger L, et al. Code status transitions in patients with high-risk acute myeloid leukemia. Blood Advances. doi: 10.1182/bloodadvances.2022007009.