What Does Coma Mean? Implications for Shared Decision Making in Acute Brain Injury

Background Insufficient attention has been devoted to shared decision-making (SDM) in the setting of acute brain injury (ABI). Communication occupies a central role that has been highlighted in recent research on SDM with brain injured patients, with respect to “the impact of specific clinician words and expressions”. In this investigation, we seek to understand lay public understandings of the term “coma.” Methods Qualitative analysis of lay interpretations of the term “cComa” using modified open coding of a free-text response question at the end of a survey exploring public attitudes in the context of hypothetical ABI. Respondents (n = 511) were drawn from a convenience sample using Amazon Mechanical Turk. This analysis focuses on respondents' free-text responses to the question: “When doctors say a patient is in a coma, what does that mean?” Results We analyzed 206 unique responses in order to derive emergent lay conceptualizations of coma. The following 4 themes emerged in how respondents understood coma: (1) State descriptive. (2) Marker of injury severity. (3) As in distinction (or lack thereof) from brain death or sleep. (4) Covert consciousness. For each concept, we discuss its salient elements and offer representative quotes. Conclusions This study provides preliminary qualitative evidence of lay public understandings of the neurologic term “coma”. These findings can have implications for surrogate/family–clinician communications. While a physician may intend “coma” to convey a technical description, a family member or surrogate may interpret it as a very different activity (e.g., prognostication, emotional signaling), setting the stage for miscommunication.