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While many adolescents and young adults (AYA) with cancer died in their preferred locations, about 30% who wanted to die at home were unable to do so, according to a retrospective cohort study.

Among over 500 AYA patients ages 12 to 39 with a documented discussion about preferred location of death, 75.9% died in this preferred location, reported Oreofe O. Odejide, MD, MPH, of Dana-Farber Cancer Institute in Boston, and colleagues.

Of these patients, 95.3% who preferred a hospital death died there, 70.7% who preferred a home death died at home, and 33.3% who preferred to die in inpatient hospice did so, they noted in JAMA Network Open.

“Although it is encouraging that many patients died in their preferred location, the fact that nearly 1 in 3 AYA patients who wanted to die at home received discordant care raises concerns regarding the quality of EOL (end-of-life) care for this population,” Odejide and colleagues concluded. “Our findings emphasize the need for concerted efforts to help AYA patients with cancer achieve patient-centered EOL care, where the gap between preferred and actual location of death is eliminated.”

In a commentary accompanying the study, Emily E. Johnston, MD, MS, of the University of Alabama at Birmingham, and Jennifer M. Snaman, MD, MS, of Dana-Farber Cancer Institute and Boston’s Children’s Hospital, noted that two-thirds of the entire study cohort had no documentation of preferred location of death.

“This lack of documentation is particularly shocking given that the study was conducted with AYA patients receiving care within 2 highly specialized care systems,” they wrote. “Therefore, it is likely that AYA patients receiving care outside these systems have even lower rates of documented [location of death] preferences.”

Johnston and Snaman pointed out that many clinicians find care goal discussions challenging and suggested that barriers to discussions about and documentation on location of death need to be clarified and addressed through “(1) continued development and dissemination of advanced care planning tools for AYA patients with cancer, (2) advanced communication skills training for oncologists, and (3) further development of oncology and palliative care collaborations.”

The study included 1,929 patients at Dana-Farber Cancer Institute and Kaiser Permanente Northern and Southern California who died between January 2003 and December 2019. Of these patients, 54.4% were female, 61.4% were white, 26.6% were Hispanic, 11.8% were Asian, and 8.1% were Black. Median age at death was 32.

Most (78%) had solid neoplasms, 14.7% had hematologic cancers, and 7.3% had other or unknown cancers.

A total of 1,226 patients (63.6%) had at least one documented discussion about preferred location of death, with a median of 15 days between the first documented discussion and death.

Among those with a documented discussion, 48.5% did not have a documented preference, 32.8% wanted to die at home, 14.4% preferred a hospital death, and 3.9% preferred inpatient hospice.

The timing of the last discussion was associated with the preferred location of death. When the last recorded discussion occurred more than 30 days before death (n=219), just 3.2% preferred a hospital death, 31.1% preferred a home death, and 64.8% did not have a documented preference. However, when the last documented discussion occurred within 7 days before death (n=624), 24.8% preferred a hospital death, 30.8% wanted a home death, and 39.6% did not have a documented preference.

Of the total cohort, 43% died in acute care settings (13.3% in an intensive care unit, 28.4% in a hospital, and 1.3% in an emergency department), while 33.3% died at home, and 2.4% died in an inpatient hospice.