Unique aspects of caring for dying children and their families

Abstract

Pediatric hospice has become an important service for children and their families in the past decade. In this article we present unique aspects of StarShine, the hospice of Children's Hospital Medical Center in Cincinnati, Ohio. Length-of-service data demonstrate the need to find innovative ways of encouraging earlier referral to hospice. Several specialized aspects of care, such as long-term bereavement, pet visitation and social services for the family are presented. The initiation of a novel in-home pain management program is described. StarShine has not followed an adult hospice model, and as such, we discuss those unique aspects of dying pediatric patients and suggest specific solutions and interventions designed for children.

Factors Associated With the Use of U.S. Community–Based Palliative Care for Children With Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review

“…23,56,87,100e103 Care coordination was also considered one of the most important CBPPC services, which can facilitate communication among providers and families, provide continuity of care, and minimize unwanted transitions across care settings. 18,23,101 Coordinating medical and social service providers, pharmaceuticals, devices, and care in the school setting, to name a few, 8,20,21,87,102,103 is a daunting task that has often been relegated to family caregivers. 104 Assigning a key worker or coordinator has been found in other countries to improve patient and family quality of life and to reduce unnecessary hospitalizations.…”

And Then the Dog Died

“…Novel psychotherapeutic interventions include equine-facilitated group psychotherapy (Vidrine, OwenSmith, & Faulkner, 2002). Pet visitation is a specialized care service for children in hospice (Zwerdling et al, 2000). Within family dynamics, pets can structure and promote positive functioning while diffusing negative interactions, a ''triangling'' process (Cain, 1985;Sharkin & Knox, 2003;Tannen, 2004).…”

Profit Status and Delivery of Hospice Care for Infants: The Mediating Role of Pediatric Knowledge

“…Although our study did not allow us to understand the reasons for these findings, it is possible that the rules and directives of pediatric programs are developed with older children in mind. Pediatric programs are often structured to provide psychosocial and spiritual counseling, pet visitation, massage therapy, and school resources, 14,20 features that are suitable for school-age children and adolescents. In contrast, families with infants may need highly specialized services, such as infant bereavement and memory-making activities, that are common in perinatal hospice programs but may not be present in current pediatric programs for children.…”