Objective:

To explore the prevalence and phenotype of ableist language, which refers to words that reflect bias against individuals with disabilities, in goals-of-care (GoC) discussions in the Neurocritical Care Unit (NCCU). 

Background:

GoC discussions guide decisions on the intensity of life-sustaining treatments for patients in the NCCU. These discussions involve weighing potential disability outcomes and are often focused on functionality, which may risk introduction of ableist language. Clinician and family ableist language in GoC conversations remains understudied in NCCUs. 

Design/Methods:

We qualitatively analyzed 67 de-identified transcripts of audio-recorded clinician-family meetings from an ongoing single-center, observational study. Two coders developed and calibrated a codebook using deductive and inductive approaches and categorized clinician and family ableist language into 5 codes: (1)Superiority(non-disability as better); (2)Pity/Fear(disability as tragic); (3)Dehumanizing(disability as subhuman); (4)Stereotyping(people with disabilities as "brave" or people like “them”); and (5)Euphemism (indirect terms for disability). Coders double-coded all transcripts and resolved discrepancies via discussion.

Results:

Across 69 clinician-family meetings for 59 patients by 25 different clinicians, the median [IQR] physician age was 45[38-47], years in practice was 18[10-20], 95% were attending-led, and 72% female-physician led. Ableist language was present in 62%[43/69] of transcripts: Stereotyping (6.0%), Pity/Fear (20%), Euphemism (7.2%), Superiority (46%), and Dehumanizing (25%). Superiority occurred in more than double of instances among the clinicians than family members (73%[46/63] vs. 27%[17/63]) while family members used Dehumanizing language more often than clinicians (65%[20/31] vs. 35%[11/31]). The disability paradox—where people with disabilities report a higher quality of life than others expect—was described by a clinician in one transcript (1.4%[1/69]). 

Conclusions:

Ableist language was prevalent in GoC discussions among both clinicians and families, potentially leading to biased GoC decisions. Further study should determine the influence of ableist language on withdrawal of life-sustaining treatment for patients with a disability prognosis.