Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope

Abstract

<b><i>Background:</i></b> Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. <b><i>Objective:</i></b> To better understand legacy making's effect on bereaved parents, this study examined (1) the presentation of legacy making to parents, (2) parent satisfaction, and (3) parent utilization of the project. <b><i>Design:</i></b> Eko CORE (Eko Devices, Inc., Berkeley, CA), a digital stethoscope that generates a phonocardiogram, a graphical representation of S1 and S2 heart sounds, was used to record children's heartbeats as they approached end of life. The heartbeat was then overlaid to a song or voice recording or kept as a stand-alone file. An artistic embellishment of the phonocardiogram was also created. Parents were surveyed about their experience with the Music Therapy Heart Sounds (MTHS) program. Twelve parents completed the survey. <b><i>Setting/subjects:</i></b> Tertiary care children's hospital. The subjects were bereaved parents. <b><i>Measurements:</i></b> Five-question survey. Institutional Review Board review exempt. <b><i>Results:</i></b> All respondents would recommend the MTHS program to other families experiencing end-of-life decision making. Forty-two percent (<i>N</i> = 5) heard about the program from pediatric palliative physicians, and 50% (<i>N</i> = 6) heard about it from therapists such as music or child life. The respondents varied in how often they utilized their child's heartbeat recordings: 25% (<i>N</i> = 3) viewed or listened monthly, 33% (<i>N</i> = 4) not at all, 17% (<i>N</i> = 2) almost weekly, 17% less than monthly, and 8% (<i>N</i> = 1) daily. <b><i>Conclusion:</i></b> The MTHS program is an easy-to-implement and cost-effective way to perform legacy making that bereaved parents recommend for other families.