Timing and Outcomes of Palliative Care Integration Into Care of Adolescents and Young Adults With Advanced Cancer.

Purpose: Adolescent and young adult (AYA) patients with cancer frequently receive intensive measures at the end of life; many also express care goals that align with a palliative approach. We sought to understand the extent to which AYAs are referred to palliative care before death, the timing of referrals, and associations between referral timing and end-of-life care outcomes.

Methods: Review of electronic health data and medical records for 1,918 AYAs age 12-39 years who died after receiving care at one of the three sites between 2003 and 2019. Patients who received palliative care but lacked documentation of referral timing were excluded.

Results: Most included AYAs were White (61%); 12% were Asian, 8% Black, and 27% Hispanic. Nearly three quarters (73%) were referred to palliative care before death. Thirty-six percent of palliative care referrals took place before the last 90 days of life; 30% were in the last month of life. Palliative care referrals and their timing were associated with care received at the end of life, with earlier referrals associated with fewer intensive measures near death, including chemotherapy in the last 14 days of life ( = .001) as well as intensive care unit admissions, emergency room visits, and hospitalizations in the last month of life ( < .001 for all). Patients who were referred to palliative care were more likely to have symptoms assessed in the last 90 days of life, including pain, dyspnea, nausea, diarrhea, constipation, depression, and anxiety ( < .001 for all).

Conclusion: Although many AYAs receive intensive measures at the end of life, most are also referred to palliative care. Earlier referrals have potential to reduce care intensity and enhance attention to symptoms and quality of life near death.