Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer

Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer

Currie ER; Johnston EE; Bakitas M; Roeland E; Lindley LC; Gilbertson-White S; Mack J

Journal of Palliative Care

2021

Oncology

BACKGROUND: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. OBJECTIVE(S): To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care communication. DESIGN: Cross-sectional observational study. SETTING/SUBJECTS: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. MEASUREMENTS: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. RESULT(S): Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. CONCLUSION(S): Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.

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2021 Special Edition - Oncology