Evaluating the Impact of Language Access Equity During Autopsy Consent

Introduction: Pediatric critical care providers lead difficult end-of-life discussions that can be made more challenging when faced with a language barrier. We hypothesize the lack of access to end-of-life documents in a family’s preferred language negatively contributes to these experiences for providers.


Methods: A survey was sent to critical care providers in a large, academic PICU in which only an English translation of an autopsy information and consent form is currently available. 32 of 55 providers (58.2%) completed the survey. 12 providers who had never consented for an autopsy were excluded after demographic collection. The remaining 20 providers answered a mix of quantitative and qualitative questions regarding their experience with consenting for an autopsy. The next stage of this study will include the creation of a Spanish translation of the autopsy consent form with a follow-up survey 6 months after the dissemination of the translated form.


Results: Of the 32 providers who participated in the survey, 62.5% (n = 20) had consented for autopsy and were included in this study. This included 16 attendings, 4 fellows, and 1 advanced practitioner. None of the participating providers reported Spanish fluency. 12 providers (60%) had discussed autopsies with families whose primary language was not English; Spanish was the most common non-English language. Using a Likert scale, 95% of providers reported the lack of a Spanish-language autopsy consent form at least somewhat negatively impacts their communication effectiveness; the majority (40%) reported the lack of a translated consent form was very likely to impact communication effectiveness. 15 providers (75%) reported the lack of available translated forms has had at least some negative impact on their emotional well-being during end-of-life conversations. 9 providers (45%) reported spending an unequal amount of time with families depending on the family’s primary language.


Conclusions: Equitable access to written resources in a family’s primary language affects a provider’s effectiveness, time management, and emotional well-being. Our results suggest the use of a Spanish-translation autopsy consent form will be an effective way to improve communication and decrease the emotional burden of inequitable language access during end-of-life conversations.