Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States

Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States

Akard T; Burley S; Root MC; Dietrich MS; Cowfer B; Mooney-Doyle K

Palliative Medicine Reports

2021

terminal care; palliative care; survey; palliative medicine; hospitalized child; hospice and palliative care nursing

Background: Our 2012 survey of providers described legacy services offered at children's hospitals nationwide. Since then, the science related to legacy interventions has advanced, resulting in increased recognition of the importance of legacy services. Yet, legacy interventions offered by children's hospitals have not been recently described. Objective: To describe current legacy services offered by children's hospitals in the United States and compare with our previous results. Design: Descriptive cross-sectional design. Setting/Subjects: Participants included providers (N = 54) from teaching children's hospitals in the United States. Measurements: Electronic REDCap survey. Results: Similar to our prior research, 100% of respondents reported that their hospital offers legacy activities with 98% providing such services as a standard of care. Notable increased numbers of children are participating in legacy interventions compared with the previous study, now with 40% (compared with 9.5% previously) of participants reporting >50 children per year. Patients being offered legacy activities include neonatal intensive care unit (NICU) patients, those with life-threatening traumatic injuries, those on life support for extended periods of time, and those referred to hospice. Although not statistically significant, the percentage of hospitals offering legacy-making to children with cancer, neurodegenerative diseases, and life-threatening illnesses is slightly increased from the prior time point. Conclusions: Children across developmental stages and illness contexts and their families can benefit from both the memories generated through the process of legacy services and the subsequent tangible products. Providers should continue to offer legacy opportunities to seriously ill children and their families across a wide array of settings and illness contexts.

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