Purpose:  The death of a child is one of the most painful losses for families, yet there is limited research focusing on the needs of children and their families during the experience. This project includes a three-pronged needs assessment and development of an interdisciplinary team focusing on addressing the findings of the assessment.

Method: Three studies were conducted to determine the needs of children with life-limiting conditions and their families: 1) retrospective medical record review examining circumstances surrounding deaths of hospitalized children (n=105), 2) staff survey examining knowledge of multiple disciplines related to palliative care (n=223), and 3) phone interviews to describe parental satisfaction with pediatric end-of-life care (n=17).  

Results:  1) Consistent with other studies, the majority of inpatient pediatric deaths occurred in an intensive care setting. While pediatric deaths may follow sudden, acute, traumatic, or chronic disease states, the median LOS for children dying in this population was one week or longer.  2)  Misunderstanding exists about the compatibility of palliative care and aggressive treatment.  3) Parental satisfaction with healthcare at child’s end-of-life leaves room for improvement.   

Conclusions:  1) Hospital stays afford the opportunity to provide comprehensive EOL care for children and their families, and this care may be provided in or outside of the intensive care units; 2) Education and role modeling may be helpful with interdisciplinary teams of healthcare providers, and 3) Communication can play a key role in parents’ perceptions of quality of healthcare.  Children with life-limiting conditions and their families may benefit from 1) a team focus on pertinent clinical issues, 2) knowledgeable staff, 3) support for family and caregivers, and 4) research to enhance the knowledge base about palliative care.