For many cancer patients, high-intensity treatments such as intubation and ICU admission are administered during their end-of-life care, but little is known about whether that care is in line with a patient’s wishes and treatment goals. In an analysis recently published in the Journal of Clinical Oncology, data was collected from patients who died within one year of receiving a stem cell transplant to better understand what end-of-life for these patients entails and how it can be improved upon to ensure that a patient is dying in the way they would like.
Emily Johnston, M.D., assistant professor in the University of Alabama at Birmingham Division of Pediatric Hematology-Oncology and member of UAB’s Institute of Cancer Outcomes and Survivorship, was the lead author.
“From our data, we understand there is a correlation with high-intensity end-of-life care in patients who die within one year after receiving a stem cell transplant, but we are still unsure if that was the care they wanted,” Johnston said. “As oncologists, we need to better understand a patient’s wants — what are their end-of-life goals? Do they want to undergo further treatment or return comfortably home? Improving end-of-life care is the goal, and we need to make sure that care is what the patients want.”
According to the study of more than 2,100 pediatric and adult patients, the most common end-of-life care high-intensity treatment included 83 percent dying in the hospital, 49 percent being admitted to the intensive care unit and 45 percent undergoing intubation. High-risk groups identified in the study included patients ages 15-21 and 30-59, patients with acute lymphoblastic leukemia, and patients with comorbidities at the time of their stem cell transplant.
However, the data does not indicate the patient’s preference in their high-intensity end-of-life care. As Johnston explains, better understanding patient goals, how caregiver outcomes are affected by the intensity of end-of-life care, and the added expense associated with high-intensity medical care at this phase of a patient’s life is what needs to determine how patients want to spend their remaining time.
Further, quality markers for pediatric end-of-life care need to be developed to understand how to best care for children who are dying.
“The findings suggest that, as oncologists, we need to start having end-of-life care conversations earlier with patients to determine if a high-intensity treatment plan is consistent with their goals, or if a lower-intensity treatment plan is best; it’s not a one-size-fits-all approach in end-of-life care,” Johnston said. “My hope is that, through continued studies, we can better give patients the opportunity to die in the location they want after receiving care that is consistent with their end-of-life goals.”