Improving Genetic Testing Protocols as a Way to Assist Grieving Families in Finding Answers to Their Child's Death (QI601)

Abstract

•Discuss challenges in perimortem genetic testing and funding.•Describe process of genetic testing approval and how to align this with family goals of care. In pediatrics, genetic testing around the time of death may help to confirm an underlying diagnosis and help families identify recurrence risks; however genetic testing often is not approved by hospitals or insurance companies as it will not change the medical treatment directly for the dying child. Families are faced with a decision between their financial stability and finding out the reason why their child was sick and if their current or future children are at risk. Pediatric teams at two US children's hospitals recognized the economic and emotional impact that completing this testing can have on grieving families and collaborated to create new institutional policies, streamline institutional approval, and establish philanthropic funds for perimortem genetic testing. By June 2019, two children's hospitals will have created a collaborative process to establish institutional policies, map out a streamlined process, and establish philanthropic funding for genetic testing as part of end-of-life care. Ninety percent of perimortem genetic testing will be ordered with this new perimortem genetic testing process when criteria are met. Stakeholders in workgroups included laboratory stewardship personnel, pediatricians, palliative providers, hospital administration, philanthropy officers, and hospital legal teams. Both institutions developed perimortem genetic testing policies to clarify medically necessary use of genetic testing. Patient eligibility criteria were established for use of philanthropic funds: high likelihood of genetic diagnosis, diagnosis not previously confirmed, and testing aligns with family goals. Approval, documentation, and follow-up procedures were defined. Perimortem genetic testing policies were written at both sites and ratified, a process was created for approval of perimortem genetic testing, philanthropic funds were established at both sites with fund steering committees and follow-up with bereaved families established. Two patients were approved since the processes were put in place in June 2019. Two children's hospitals recognized the emotional and financial impact of finding the etiology to a child's death. Collaborative work has established perimortem genetic testing approval and funding.