AYA Desire for At-Home Death Not Often Achieved

By Leah Lawrence - Last Updated: September 10, 2022

A new study has found that most adolescents and young adults (AYAs) with advanced cancer would prefer to die at home.

“Young people expressed a desire to spend their remaining time with their loved ones in the home setting, where they could experience comfort and a sense of normalcy,” study researchers wrote. “This finding is aligned with some previous retrospective and survey studies that also identified a desire for home death.”

Researchers conducted in-depth interviews with 23 AYAs with stage IV or recurrent cancer, 28 caregivers, and 29 clinicians, including nurses and nurse practitioners. Patients were asked about priorities for care including location of death. Caregivers were asked about what was important for their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs.

Most AYAs (17 of 23) and their caregivers preferred a home death.

“The desire for a home death was largely fueled by the desire to be surrounded by family and friends,” the researchers wrote. “Several participants also felt that dying at home would be more comfortable, provide a sense of normalcy, and protect them from the isolation of being in the hospital.”

However, in some cases, AYAs and caregivers opted for a hospital death either to alleviate caregiver burden or to protect siblings. Clinicians also acknowledged that caregivers’ desire to protect siblings can sometimes lead families to decide on hospital death.

Additionally, some AYAs or caregivers opted for a hospital death due to a lack of adequate services to manage intractable symptoms at home or because of insufficient caregiver support. Five of 14 caregivers who expressed preference for home death reported that it was not achieved.

“The inability to manage complex and high symptom burden at home is a major contributor to deaths occurring in hospital. Although many AYAs and their families desire a home death, the ability to optimize symptom control, particularly pain, is often a higher priority,” the researchers noted.

The balance of desire for a home death with adequate symptom control can often put AYAs and their caregivers in a difficult position of giving up their preference for a home death.

“To ensure that the end of life experiences of AYAs align with their preferences, robust home-based services for symptom control and logistical/psychosocial support for family caregivers and siblings are imperative,” the researchers wrote. “Moreover, tailoring hospice services to meet the unique needs of this population could be a promising avenue to allow AYAs who desire a home death to realize their goal.”



Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer