Response to: “Gaps in Understanding About Brain Death in Various Health Care Professionals And Families”

We would like to thank Panda et al., for their thoughtful inquiries about our manuscript “A Qualitative Identification of Gaps In Understanding About Brain Death Among Trainees, Health Care Personnel and Families at an Academic Medical Center.”¹ As Panda et al. identify, the results included within our manuscript can be used to aid educators in devising a targeted curriculum; this is what we have done at our institution.

Panda et al. suggest that the write-in responses by our respondents may aid curriculum development. Only a small number of individuals provided write-in responses; many of these responses could be re-coded to fit with appropriate categories of listed questions. A small number were excluded (e.g. respondent typed “not applicable”, n = 2, or “never asked questions”, n = 3). Ultimately, there were 6 (2.7%) and 6 (2.7%) meaningful write-in responses detailing, respectively, personal questions asked by medical professionals and questions asked of them by families. The majority of these write-ins were provided by attending physicians and those with a nursing background. The small number of write-ins may reflect our broad question base from which to choose. Given the small number of write-in responses, these were not included in the original manuscript, but we are happy to characterize them here.

Attendings’ own write-in questions focused on alternatives to brain death diagnosis, and whether brain death was even applicable to their profession (e.g. emergency medicine physicians). Attendings reported being asked philosophical (e.g., “How can you be sure?”) and policy-related (e.g. “Can I refuse testing?” “Can I have more time?”) questions by families. Answers to some of these family questions are state-specific and institution-specific, so local guidance is encouraged. In contrast, write-in questions from nursing were focused on experiential conflict (e.g. “Why is [s/he] still moving?”).

At a fellow level, personal questions were focused on how to segue into asking about organ donation. However, individuals without specialized training and those involved in brain death testing or potential organ transplantation are discouraged from discussing organ donation.^2,3 With this in mind, we feel education is better focused on enhancing the relationship between healthcare professionals and organ procurement professionals.⁴ Accordingly, we have used the results from this qualitative analysis to design a curriculum targeted to fellows including sessions with simulated family conversations. Standard language is provided to the fellows for discussing the diagnosis of brain death in a straightforward manner, and examples of how to introduce organ procurement professionals are also given during this simulation.

Our survey project was initially designed as a quality improvement task without objective knowledge assessment, but it became evident that at least at our institution there exist subjective gaps in understanding even among professionals in specialties that interface with brain death recurrently. Literature shows that the clarity of language used regarding brain injury and death impacts long-term grief in families.⁵ To the extent that healthcare professionals can help families understand the information given with increased attention to their emotional needs, we support ongoing research in this area, including objective assessments of knowledge.