COULD BRAIN PATTERNS BE USED TO COMMUNICATE PATIENT WISHES IN CASES OF SEVERE BRAIN INJURY?
A growing field of research is examining the brain patterns produced by people with severe brain injuries who can no longer communicate and appear to be in a vegetative state. Some have argued that one day we may be able to unlock a code from these patterns and communicate with these patients.
Two UBC neuroethicists are studying what this might mean for Canada and other countries that have recently introduced legislation for physician-assisted death. In a JAMA Neurology article published this March,
Judy Illes and Emanuel Cabral examine the ethics around end-of-life decision-making for patients with these injuries. Are there any examples in Canada or in other countries where patients with severe brain injuries who were unable to communicate have been able to access physician-assisted death?
EC: So far in Canada, there are no known cases of patients with brain trauma who have tried to access physician-assisted death. In the United States and the Netherlands, there have been cases where patients with brain trauma have been asked whether they wanted to prolong their life. In all of these cases, the patients suffered from a specific form of brain trauma called locked-in syndrome. Essentially, these people maintain a good awareness and understanding of their surroundings, but are unable to verbally communicate because they are practically paralyzed within their own bodies. In most cases, patients manage to communicate through eye-blinking or restricted body movements, and sometimes using an alphabet board.
In one such case, physicians in the United States were able to assess one man’s memory and thinking by communicating through small head movements. They also allowed him to make decisions on receiving life-prolonging treatments using this method. In another case in the Netherlands, another man with locked-in syndrome used blinking to communicate that he wanted physician-assisted death. After several weeks of consulting with the patient, other physicians and the family, the patient was administered life-ending drugs.
JI: These patients have used indirect “codes” to express their end-of-life preferences. Some people might logically suggest that we can use brain imaging as the “code” to communicate with people in minimally conscious states and that, hypothetically, this could open legal avenues for these patients to request physician-assisted death. Our paper anticipates this question and addresses the issues around it. How likely is it that we will be communicating with patients about end-of-life decisions by analyzing their brain patterns? JI: The public is already asking. We need both to anticipate such questions and be prepared to be responsive to them as a professional community. EC: The idea seems far-fetched. However, studies have shown that it might be possible to use
brain imaging to communicate with patients in minimally conscious states. As it stands, this communication channel is still quite weak, but, as research continues, it has led to questions about whether this type of communication might be applied to end-of-life care.
Under Canadian law, verbal communication is not a requirement for physician-assisted death. However, if the person has difficulty communicating, everything must be done to provide a reliable way through which the person can understand the information that is provided to them and communicate their decision. Currently, no such system exists to do so with patients in minimally conscious states.
What are your concerns about using this form of communication?
EC: People with severe brain trauma make up a highly vulnerable and historically neglected population whose health is placed in the hands of family members or health professionals. If we consider feminist ethics and disability ethics, they both emphasize that we have to be certain that the person fully understands the information given to them and their expressed wishes are clear. JI: There is a huge leap, however, between communicating directly with someone, communicating through a tool like a spelling board, and using statistical interpretation of brain signals as a sign of preference or desire. We would need to be absolutely certain that the answers interpreted through brain imaging are what patients intended to express, and that their answers reflect reproducible, intact decision-making abilities. Researchers are still working out how to interpret the different signals that injured brains produce.
The proliferation of fake news is transforming the way people, including children, perceive what’s happening in the world around them. Ron Darvin, a lecturer and researcher in the faculty of education, studies digital literacy skills of students in kindergarten through Grade 12. In this Q& A, he discusses the trend of fake news, how to fight it, and what parents can do to make sure their children can tell the difference.
What is fake news?
Fake news has become a catch-all term for everything from hoaxes to conspiracy theories to “alternative facts.” To combat fake news, we have to distinguish it from satire or news that people just don’t want to hear. Fake news is fabricated, deceptive or distorted information meant to mislead the public. Motivations for fake news can be political or to promote self-interests, while others do it to get their five minutes of fame. For some, fake news is a business. Digital ads generate profits, and websites with sensational fake news are paid for every click that they get.
What are some ways people can combat fake news?
While this feature hasn’t made its way to Canada yet, Facebook has started rolling out a third-party fact-checking tool in the US and Germany that will label fake news shared on the network as “disputed.” Google Chrome extensions include something called a “BS Detector,” which displays a red warning when you’re about to share something from a questionable source. Fact-checking sites like Snopes and Politifact can also be valuable resources. A site called Hoax Slayer combats email scams and debunks hoaxes that have gone viral.
Apart from using these tools, users should also know how to examine online texts more closely. This would include understanding the political leanings of certain news sites, analyzing domain names or URLs to make sure they are legitimate, or recognizing poor web design. Consuming news effectively requires the audience to be vigilant about what they are reading, listening or watching, and figuring out who created this content and for what purpose.
How can parents teach their kids about fake news?
Kids have two worlds: offline and online. More than parents just asking their child: “How was school today?” they should also ask them what they’ve read online, on Facebook, or seen on Snapchat that day. Parents can role model digital literacy skills to their children and provide them with the right tools to verify what’s online. They have to surround them with legitimate news sources and help them learn how to distinguish fact from opinion at a young age.
How is this era of post-truth affecting kids today?
Fake news has consequences and important implications for whom we elect, the laws we pass, and the kinds of choices we make in our lives. Without the right critical tools, our kids can become not only victims of fake news, but also promoters of it, by indiscriminately sharing things online.
In a culture of clickbait, emotions rather than facts can shape public opinion. It becomes easier for us to rely on what feels right, rather than to figure out what is right. The irony of social media is that while it’s supposed to open doors to the rest of the world, it can actually usher us into filter bubbles where we hear what we want to hear. Facebook profits when we keep clicking, liking and sharing stuff online, so their algorithms make sure that what pops up on our newsfeed will make us comfortable enough to keep coming back. This bubble and what we fill it with naturally shapes the way our kids will think about the world.