P0530 - Charlie's Way: Changing institutional practices for post-mortem care in Pediatrics by bypassing the morgue.

Background: In the past decades pediatric hospitals have developed beautiful end-of-life practices for families of dying children including memory boxes, photography, fingerprints and artwork. Incongruously, after death, the child’s body is typically bound, bagged and sent to the morgue as parents leave the hospital and leave them behind. When Charlie died at our institution his parents requested to bypass the morgue - they walked out of the hospital holding their baby, personally handing him to their trusted funeral director. The positive impact this had on the family and staff made us realize there is a better way, and we decided to develop a process for other eligible families to bypass the morgue. We called this Charlie’s Way.

Aim: Our initial goal was that over a 6 month period families of 20% of children who die in the pediatric and neonatal intensive care units (PICU/NICU) would choose bypassing the morgue after their child’s death. A second goal was to improve nursing satisfaction with post-mortem care by 20% by January of 2020.

Methodology: We assessed NICU/PICU nursing staff’s opinions about hospital practices around pediatric post-mortem care, desire to change this practice and perceived barriers to change. We then worked with a multi-disciplinary group including pediatric palliative care, nursing leadership, social work, pathology and security to develop and implement a new protocol for bypassing the morgue. Each patient served as a PDSA cycle, highlighting strengths and identifying weaknesses in the process. We then evaluated the quantity of cases and circumstances surrounding the death. We are currently working on analyzing nursing satisfaction with the process with survey data.

Discussion: 95 % of queried nurses voiced dissatisfaction with current pediatric post-mortem care and a desire for system-wide change. An overall 38 child died in the children’s hospital since Charlie’s way was initiated in May, 2019 through January, 2020. This number excludes Emergency Department deaths and non-viable births. Of these 38 deaths, 8 families (21%) have chosen to use Charlie’s Way. There is an average of 1 family per month that opts for Charlie’s Way.

Charlie’s Way has been supported across multiple hospital units, at all times of day, in both expected and unexpected deaths and with and without palliative care involvement. No two patients have shared the same diagnosis and patient ages have ranged from 4 days to 18 months.

The biggest factors that have affected success for Charlie’s Way are units’ comfort in guiding a family through the process and a family choosing a funeral home early.

In addition to analyzing nursing satisfaction data with Charlie’s Way, we are working on a short questionnaire for bereaved parents to explore their experience. We are also developing formal education for nursing leadership on Charlie’s Way.