Ample evidence indicates that African Americans, on average, favor more aggressive medical care near the end of life than do white Americans. This translates into more days in the intensive care unit and more unsuccessful attempts at cardiopulmonary resuscitation before death, and it means less hospice care. This phenomenon is typically attributed to differences in values between minorities (Asian Americans and Latinos express similar preferences to blacks) and whites or to a deep-seated mistrust of the medical profession—or both. In a new study released today, my colleagues and I suggest that lack of understanding of their health status may play a role as well. Moreover, showing patients a video can overcome poor comprehension.
In our study, “Using Video Images of Dementia in Advance Care Planning,” (Archives of Internal Medicine 2007; 167:828-833), we looked at advance care planning, at what approach to care patients say they would want in the future. Specifically, we asked how they would want to be treated if they developed advanced dementia, a condition in which they were dependent on others for their most basic needs such as eating and going to the bathroom and in which they could speak only a few words. Our strategy was to give the research subjects a verbal description of advanced dementia and then ask them whether they would want life-prolonging care (conventional comprehensive care), limited care (excluding CPR and ICU care), or comfort care (treatment of symptoms). Next we showed each of the 120 individuals enrolled in the study a 2-minute digital video of a real person with advanced dementia. The film showed a nursing home resident being fed by her daughters; it showed the daughters asking her questions and failing to elicit a response; and it depicted the daughters transporting her in a wheelchair. The accompanying narrative was identical to the previously delivered verbal description of advanced dementia as a progressive, ultimately fatal neurologic disease that causes profound impairment in memory, thinking, and judgment. After watching the video, the research subjects were again asked what approach to medical care they would favor.
What we found is that before watching the video, 21% wanted life-prolonging care, 18% wanted limited care, 50% wanted comfort care, and 11% were uncertain. After seeing the video, nobody favored life-prolonging care, 8% wanted limited care, 89% said they wanted comfort care, and 3% were unsure. None of the subjects switched from a less intensive to a more intensive level of care and 98% said they found the video “very helpful” or “somewhat helpful.”
When we focused on the 30 African American patients and the 30 Latino patients in our study (we intentionally recruited our sample so as to ensure that ½ would be white, ¼ black, and ¼ Latino), the results were even more striking. After being exposed only to the verbal description of advanced dementia, more blacks and Latinos than whites favored life-prolonging care. In fact, race/ethnicity—along with education—was the best predictor of whether a person would select more aggressive care. After watching the video, there was no longer any association between the level of care chosen and either race/ethnicity or education.
This was a small study conducted entirely in the greater Boston area. We don’t know whether our results would hold up if we carried it out in other locations and if we tested our video on a large and more diverse group of African Americans and Latinos. But we have reason to believe that part of what is going on when we ask patients to imagine future health states and to tell us what treatments they would or would not want is that we are failing to adequately capture what it would be like to have a hypothetical condition. We suspect that blacks, whites, and Hispanics often have a shared conception of what constitutes appropriate care—but we may need a medium such as video to better explain unfamiliar clinical situations.