Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)


Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)


Thienprayoon R; Lane J; Grossoehme D


Journal of Pain and Symptom Management




mourning; college; feasibility study; comfort; student; morality; conference abstract; injury; human; child; controlled study; terminal care; interview; staff; memory; intensive care unit; light; thinking; bath; illumination; job satisfaction; posthumous care; privacy


Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care in pediatric intensive care units.*Discuss multiple interventions to improve end-of-life care for children who die in intensive care units and their families. Approximately 70% of pediatric deaths at Cincinnati Children's (CCHMC) occur in an intensive care unit (ICU). Memories of the child's death critically impact the grieving process. Yet, ICU rooms are not designed for end-of-life (EOL) care. Space and privacy are limited; families may feel pressured to leave quickly after the child dies. Visitation policies limit family presence. Ritual bathing is difficult to accommodate. Some families desire to accompany the child through the basement to the morgue, a walk described as "unceremonious" and "stark". The Objectives of this study were to (i) understand EOL and post-mortem (PM) experiences of bereaved parents, how they relate to grief/mourning, (ii) understand EOL and PM experiences of staff, how they relate to job satisfaction/moral injury (iii) design new patient-centered, culturally sensitive processes and dedicated space for EOL and PM care. This project was a collaboration between CCHMC and a University of Cincinnati College of Design, Architecture, Art and Planning student design team, united through the Live Well Collaborative (LWC), a non-profit utilizing a design-thinking process to co-create innovations to improve health outcomes. LWC utilized human centered design in three phases: research, ideation and refinement. Research: LWC drew insights from a literature review and interviews with bereaved families and staff. The team designed an experience/journey map visually representing stakeholders' thoughts, experiences, and emotions throughout the EOL process. A feasibility/influence chart focused them on 3 improvement areas: privacy, transition from intensive care to legacy building, and parental control. Ideation: the team's co-creation sessions with parents and staff led to 7 opportunity concepts. Refinement: Concepts were tested and refined: room privacy lights, a comfort quilt, little reminders, announcement and spiritual lighting en route to the morgue, a remembrance garden and other spatial considerations. These were presented to the CCHMC team and other stakeholders for implementation.


Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

March 2019 List



Thienprayoon R; Lane J; Grossoehme D, “Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452),” Pediatric Palliative Care Library, accessed January 27, 2022,

Social Bookmarking