Challenges in providing palliative care for adolescents and young adults with cancer

Adolescents and young adults (AYAs) with cancer have unique needs compared with other age groups. Access to palliative care among this age group remains challenging. New research published in CMAJ (Canadian Medical Association Journal) https://www.cmaj.ca/lookup/doi/10.1503/cmaj.250615 points out gaps and areas for improvement in providing palliative care for AYAs with cancer in Ontario.

Palliative care is an essential component of cancer care that should be provided early for patients with advanced cancer, sometimes alongside active cancer treatments, because it offers patients physical, functional, psychosocial, and spiritual support."

Dr. Mohamed Abdelaal, palliative care physician and clinician investigator at The Ottawa Hospital and assistant professor at the University of Ottawa, with co-authors

To better understand the use of palliative care among AYAs with cancer, researchers looked at data housed at ICES on people aged 15 to 39 years who died in Ontario between January 1, 2018, and December 31, 2022. More than half (55%) were female, 44% were in the oldest age group (35 to 39 years), and 4% were in the youngest age group (15 to 19 years). Eighty-two percent had at least 1 encounter with palliative care before death, and 76% were seen within the last 3 months of life. The researchers found that more AYAs with cancer received palliative care during this study period (76%) than in a previous study that reported only 43% of AYAs with cancer received palliative care between 2000 and 2017.

Despite this progress, the authors note that challenges remain.

"The integration of palliative care into standard cancer care, including for AYAs, remains challenging for various reasons, including the stigma around palliative care and the false belief among some patients and caregivers that palliative care is equivalent to end-of-life care and is associated with diminished hope," write the authors.

The research team noted that this age group received more intense end-of-life care than adult patients, with 25% having at least 1 emergency department visit in the last 30 days of life, 55% with at least 1 hospital admission, and 24% with admission to the intensive care unit (ICU).

"Our findings underscore that AYAs with cancer continue to receive higher-intensity end-of-life care than patients with cancer of all ages, despite having similar rates of palliative care involvement."

The researchers found that patients who were seen by specialist palliative care physicians in the last 90 days of life were more likely to die at home (41% v. 12%) and less likely to die in the ICU (12% v. 38%) than people who did not receive palliative care. The authors conclude that "these findings indicate the need for a focus on the quality of palliative care provision for AYAs with cancer, and highlight the importance of developing a specialized AYA palliative care training framework for health care providers."