Metadata
Title
Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer
Authors
Odejide OO; Fisher L; Kushi LH; Chao CR; Vega B; Rodrigues G; Josephs I; Brock KE; Buchanan S; Casperson M; Cooper RM; Fasciano KM; Kolevska T; Lakin JR; Lefebvre A; Schwartz CM; Shalman DM; Wall CB; Wiener L; Altschuler A; Mack JW
Year
2022
Publication
JCO Oncology Practice
Abstract
PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth interviews with AYAs (age 12-39 years) with stage IV or recurrent cancer, family caregivers including bereaved caregivers, and clinicians of AYAs with cancer. Patients were asked about their priorities for care including location of death, caregivers were asked what was most important in the care of their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs. Directed content analysis was applied to interview data, and themes regarding location of death were developed. RESULTS: Eighty individuals (23 AYAs, 28 caregivers, and 29 clinicians) participated in interviews. Most AYAs and caregivers preferred a home death. However, some AYAs and caregivers opted for a hospital death to alleviate caregiver burden or protect siblings from the perceived trauma of witnessing a home death. Lack of adequate services to manage intractable symptoms at home and insufficient caregiver support led some AYAs/caregivers to opt for hospital death despite a preference for home death. Participants acknowledged the value of hospice while also pointing out its limitations in attaining a home death. CONCLUSION: Although most AYAs prefer to die at home, this preference is not always achieved. Robust home-based services for effective symptom management and caregiver support are needed to close the gap between preferred and actual location of death for AYAs.
Authors
Altschuler A | Brock KE | Buchanan S | Casperson M | Chao CR | Cooper RM | Fasciano KM | Fisher L | Josephs I | Kolevska T | Kushi LH | Lakin JR | Lefebvre A | Mack JW | Odejide OO | Rodrigues G | Schwartz CM | Shalman DM | Vega B | Wall CB | Wiener L
MeSH
Adolescent | Adult | California/eh [Ethnology] | California/ep [Epidemiology] | Caregivers/px [Psychology] | Child | Family/px [Psychology] | Female | Hospice Care/px [Psychology] | Humans | Life Support Care/px [Psychology] | Male | Massachusetts/eh [Ethnology] | Massachusetts/ep [Epidemiology] | Neoplasms/px [Psychology] | Neoplasms/th [Therapy] | Prognosis | Qualitative Research | Quality of Life/px [Psychology] | Terminal Care/px [Psychology] | Young Adult