Editor’s Note: In March 2017, Ms. Coleman’s daughter Justice Hope, who was medically complex and had multiple disabilities, died at age 11. She was the sunshine in the lives of many and communicated using a thousand smiles.
Family Connections with Pediatrics
There were several times in my daughter’s 11 years of life that my husband and I had to think and talk about planning for her end of life. Most were around short, rushed pieces of information- not full discussions that explored options. Looking back now, I think those incomplete talks were more scary than actual full discussions about what end-of-life could look like- our options, our wishes, and how to plan. A lot of things did not go well in my daughter’s last year of life but having an advanced care plan (the process of talking about treatments to sustain life and making long-term care goals) in place helped to ensure that she died at home surrounded by us all. In this month’s Pediatrics, a Research Brief entitled, “Code Status Discussions in Pediatric Patients with Heart Disease During Terminal Admissions,” reviews patient charts to see if or when advance care planning happened and how it affected care (10.1542/peds.2023-063221).
What is in the study?
The authors looked at charts of children with heart conditions (those who died after birth in the hospital and those who died upon readmission) at Medical University of South Carolina. For children who were born with heart conditions but did not live to be discharged, they noted that conversations occurred later, and were less likely to be documented, even though these patients often spent more time in the hospital than those who were readmitted.
Additional findings:
- Differences noted between doctor suggestions and the plan that the family chose
- Mismatches identified between the advance care plan and the care received at time of death
Even though their study was at one hospital, the authors note that their findings line up with others and stress the need to have consistent advance care planning available to all children with heart disease.
What can you do with this study?
If your child has a serious illness, including a heart condition or other life limiting illness, use this article to start talking with your child’s doctor about advance care planning. Planning is a process- it can take time and a number of conversations. If you aren’t sure where to start, ask questions. There are a lot of terms used around end of life: advance care planning, code status, palliative, hospice. What does each mean and how are they related?
Additional resources:
- Courageous Parents Network Advance Care Planning has written and video materials for families, and also can link you into a community of families in similar situations.
- Toward an Understanding of Advance Care Planning in Children with Medical Complexity is a helpful Pediatrics article that shares the insights of families who have gone through the process and gives ideas for how to start planning.
- There are also tools to help to start conversations with children about advance care planning, such as: Conversation Starter Guide for Caregivers of Children with Serious Illness.
