In her new book, Upstate Medical University bioethicist L. Syd Johnson, Ph.D, explores ethical questions that surround the medical treatment of survivors of traumatic brain injuries.

Disorders of consciousness include comas, vegetative states and states of diminished consciousness. Johnson is concerned that the so-called vegetative state is misdiagnosed about 40 percent of the time and that this widespread uncertainty should be appreciated as medical professionals and family members consider treatment options.

 “If we had a 40 percent rate of misdiagnosing cancers, no one would think that was acceptable,” she said. “If we were doing mastectomies on women and we were wrong 40 percent of the time about their diagnosis, that would be a crisis.

“Although these patients are rare, I think that when we look at it in the context of how many of them might be misdiagnosed, we should be really cautious about the conclusions that we draw about them.”

Her new book, “The Ethics of Uncertainty: Entangled Ethical and Epistemic Risks in Disorders of Consciousness,” (Oxford University Press, 2022), is a culmination and collection of her concerns that have developed in her years of work as a philosopher, bioethicist and neuroethicist.

After a career in media, Johnson returned to school at SUNY Albany to earn her master’s and Ph.D in philosophy. She did her post-doctoral research fellowship in neuroethics in 2009, which is where she first got interested in matters of the brain. She said she migrated to bioethics because it combines three of her main interests, philosophy, medicine and law.

Johnson, who came to Upstate in 2019, is an associate professor of bioethics and humanities and a member of the ethics consulting team for the hospital. She said society needs to re-think long held misconceptions about patients with brain injuries or impaired levels of consciousness.

The vegetative state, in which a patient is awake but not aware of themselves or the external world, and which is now referred to as unresponsive wakefulness syndrome, was first defined in a paper in 1972, and the authors contended then that these patients are hopeless cases. This view caught on quickly, and in 1975, a landmark lawsuit involving Karen Ann Quinlan solidified the view that such a life is without value. Quinlan was in what was then called the persistent vegetative state and her parents won a court ruling to have her ventilator turned off.

“We got the first court ruling that accepted this view that there was no point in being alive in a state of chronic unconsciousness, and that it was unfortunate and, in some sense, cruel to keep a person alive when they were in this kind of condition,” she said. “It caught on quickly that this was a condition that for many people was considered to be worse than death.”

Since then, Johnson said, there has been a perpetual questioning of whether or not patients in these states were persons whom we should care about.

Yet, she said evidence of the high rate of misdiagnoses about the vegetative state dates back to the late 1980s. And anecdotal evidence abounds of family members reporting their loved one, otherwise thought to be in a vegetative state, reacting to the sound of their voices or their touch.

Johnson said much of an individual diagnosis has hinged on a patient’s observed behavior, but it isn’t always reliable. For example, a person with a brain injury may not be able to respond to certain stimuli due to their injury, yet thanks to technological advances, there are brain scans now that can show some patients are responsive. There are cases where a functional MRI, which measures brain activity while the patient performs a mental task, has revealed brain activity similar to that of a healthy person.

“We have acted as if we could be certain about the diagnoses and from that we have developed this kind of ethical certainty about what the right thing to do is,” she said.

At the root of the debate is the difficulty in defining consciousness itself. Johnson said there is a clinical way of thinking about it as a state of being aware and awake, but that the actual definition is an age-old philosophical problem. While we often know that someone is conscious, we don’t know how consciousness arises.

“We have this notion that it is probably something that’s happening in our brains, it certainly feels like something that’s happening in our brains,” she said. … “But we don’t actually know yet how consciousness happens and what is required for it to happen.”

Johnson’s goal is for both health care professionals and family members to embrace the advances in diagnostic testing as well as this ethical uncertainty as they consider treatment options, and for society at large to re-think these long held misconceptions.

“I think the fear of surviving with a serious disability or with a serious brain injury or the fear of surviving with a disorder of consciousness influences a lot of decisions,” Johnson said.

She said the ethics of uncertainty can be applied to questions about other patients, especially people who can’t communicate, such as elderly patients with dementia, or infants.

Johnson wants the readers of her book to come away with more questions than they had before they picked up the book. She wants to poke at that false sense of certainty. 

“I do want people to acknowledge something that we often don’t like to acknowledge, which is that we just don’t know,” she said.

An interview with Johnson is available on Upstate's The Informed Patient podcast here.