Quality of End-of-Life Care Among Adolescents and Young Adults With Cancer

Abstract

Adolescents and young adults (AYAs) receive high rates of medically intensive measures at the end of life, but less is known about other measures of quality cancer care, such as use of palliative care and hospice, symptom management, and psychological support. We conducted a review of electronic health data and medical records for 1,929 AYAs age 12-39 years who died after receiving cancer care at one of three sites (Dana-Farber Cancer Institute, Kaiser Permanente Northern California, and Kaiser Permanente Southern California) between 2003 and 2019, including medical care and treatment, assessment and management of physical and psychological symptoms, and support of psychosocial and spiritual needs. We found that AYAs frequently received medically intensive measures, including late-life emergency room visits (25% with two or more in the last month) and intensive care unit (ICU) admissions (31%). However, most also received palliative care (73%) and hospice (62%). Just over half (58%) received psychosocial care in the last 90 days of life, and 49% received spiritual care, with an additional 7% declining spiritual care. Nearly all patients had pain assessed in the last 90 days of life, but only 34% had assessment for depression and 40% for anxiety. In summary, this study found that AYAs often receive medically intensive measures at the end of life, including ICU care in nearly a third, but most also receive palliative care and hospice. Suboptimal rates of psychosocial and spiritual care and assessment of psychological symptoms offer an opportunity to better address emotional and spiritual distresses at the end of life in this young population.