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 last week, Judy Illes and Emanuel Cabral examine the ethics around end-of-life decision-making for patients with these injuries.
Judy Illes
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.
Emanuel Cabral
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.