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J Adolesc Young Adult Oncol. 2019 Aug;8(4):417-422. doi: 10.1089/jayao.2018.0123. Epub 2019 Apr 23.

Location of Death and End-of-Life Characteristics of Young Adults with Cancer Treated at a Pediatric Hospital.

Author information

1
1Department of Pediatrics, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital, Cincinnati, Ohio.
2
2Division of Biostatistics and Epidemiology, Department of Pediatrics, Cincinnati Children's Hospital, Cincinnati, Ohio.
3
3Division of Anesthesia, Department of Palliative Care, Cincinnati Children's Hospital, Cincinnati, Ohio.

Abstract

Background: Location of death (LOD) is an important aspect of end-of-life (EOL) care. Adolescents and young adults (YAs) with pediatric malignancies are increasingly treated in pediatric institutions. YAs, generally defined as 18-39 years old, deserve specific attention because adults have unique developmental and social considerations compared with younger patients. Objective: The goal of this retrospective cohort study was to understand the effect of treatment by a pediatric oncology program on EOL experiences for YAs. Specifically, we examined LOD, hospice, and palliative care (PC) involvement in a cohort of YAs who died of cancer in a large, quaternary care pediatric hospital. Methods: This was a retrospective cohort study of patients ≥18 years of age, who died of cancer between January 1, 2010, and December 31, 2017. Standardized data were abstracted from the institutional cancer registry and the electronic medical record. Results: YAs in this cohort more commonly died in the hospital (54.9%). Lack of hospice involvement and the presence of a documented do-not-resuscitate (DNR) order were significantly associated with inpatient death. The majority of patients had long-standing PC involvement (95.8%, median 318 days), a DNR order (78.9%), and had enrolled in hospice care (60.6%) before death. Conclusions: These results suggest that a significant proportion of YAs with cancer remain inpatient for EOL care. Pediatric oncologists and PC teams may benefit from additional training in the unique psychosocial needs of YAs to optimize EOL care for these older patients.

KEYWORDS:

cancer; end of life care; hospice care; palliative care; pediatric; young adult

PMID:
31013460
DOI:
10.1089/jayao.2018.0123

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