An Investigation into the Public's Attitude Toward Opting out of Brain Death

Background There have been growing sentiments that the Uniform Determination of Death Act needs to be revised. One suggestion is to include a conscience clause, that is, allowing patients to "opt-out" of brain death determination. Understanding public attitudes toward a conscience clause may help inform policymakers and future proposed revisions. Therefore, we sought to investigate informed public attitudes toward continued medical support after the determination of brain death. Methods A nationwide online survey was distributed by a third-party provider. The survey had three components: (1) a 2-min educational video that explains five basic facts of brain death, (2) a validated five-item questionnaire to measure understanding of brain death, and (3) a six-item questionnaire to measure informed public attitudes toward a family's request to continue medical support for a patient with brain death. Attitudes were measured on a seven-point Likert scale. A multiple linear regression model was developed to identify predictors of attitudes toward opting out of brain death. Analysis of variance with a post hoc Tukey test was used to compare attitudes across categorical demographic variables. Results We collected 1386 responses from participants across 49 states. The average five-item knowledge score was 88%. A total of 41.9% of all participants agreed that the hospital should be required to continue treatment for an individual with brain death if their family rejects brain death. A total of 24.4% and 27.3% of participants would request further treatment for themselves and a family member after a determination of brain death, respectively. Multiple linear regression identified attitudes for oneself and for a family member, age greater than 65 years, understanding that brain death is legal death, and male sex as predictors of attitudes toward requiring continued treatment (F(6, 1380) = 142.74, adjust R-2 = 0.38, p < 0.001). Conclusions Nearly half of the participants would require hospitals to continue treatment for families who reject brain death as death. Future discussions on revising the Uniform Determination of Death Act to adopt a conscience clause should consider informed public attitudes.