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Why Doctors Must Listen to People with Brain Injury

Patients always knew non-responsiveness was not a synonym for no consciousness.

Shireen Jeejeebhoy
Source: Shireen Jeejeebhoy

In the June 28, 2019 issue of New Scientist, Nicholas Schiff is quoted as saying: "They all seem to be in a vegetative state, but we know they are conscious. It's to remind me they are out there and we are not helping them."

Not helping sums up the state of brain injury health care.

"Many of [Schiff's] patients are in a vegetative state. Their injuries have left them with no awareness of themselves or of the world around them. Or so we thought."

Patients knew better. In answer to the New Scientist article, Angela Ronson tweeted on June 30, 2019:

"I'd say that I'm conscious. What do I do?" She continued: "Before I get sue tweets, I have no power of atty or living will.Imagine Karen Quinlan or Terri Schiavo started writing. @sarcastic_f this is the problem we will have with brain interface. #Law didn't keep up with medicine. I'm using Asst Tech."

Her follower, Anne Ricketts, founder of Global Brain Injury Awareness Facebook community, quote tweeted her:

"I have known you to be conscious for 8 years - you are proof that protocols and understanding need to be changed!"

After I was diagnosed with a traumatic brain injury, I sought understanding of what this injury meant and wondered if others were suffering like me. I went in search of a message board. Back in the early 2000s, we didn't have social media. We had message boards. Because I was in the middle of two insurance lawsuits stemming from two drivers smashing into the car I was a passenger in and injuring me, I had to remain anonymous online. I dared not even write about my experience or ask questions. And so I lurked. A lot. I don't remember much about what I read, except for two things. One was a question asked of others about being in a coma. Who had been conscious? Who had been aware? Turns out, awareness in a coma was common.

(The other thing was everyone wondering how to get their reading back and the only answer was spontaneous recovery.)

As people described their coma experiences, I felt a dawning light in my own self, for although I'd never been in a coma, I absolutely could relate to their experience of being unable to respond. Family, friends, strangers would hold conversations all around me, and I struggled to respond. The louder or more numerous they got, the less I could respond. I had one wild experience where a tall, much bigger person than I leaned right into my face on the subway and yelled at me. I not only didn't say anything, not one of my muscle cells twitched. He almost hit my nose because a normal person in the face of such rage would rear back. He obviously raged at people a lot, and he probably expected a normal response. I didn't respond normally. In the back of my mind, I thought: this weird non-response isn't good. I felt no fear, though. Also, not normal. I began to respond internally a few minutes later with unverbalized brain injury rage.

Reading those coma accounts on the traumatic brain injury message board, I began to formulate a theoretical brain injury responsiveness scale. On one end were people like me who never lost consciousness yet couldn't respond in real time if at all. Further along the scale were people in comas who could hear but couldn't respond. I didn't know about those in vegetative states, but I had no doubt from my university studies in the 1980s that their brains were regenerating and they probably had awareness as well. How much I didn't know.

And so when I read about people waking up from comas or people coming out of vegetative states, I was not shocked yet was puzzled about why physicians found it inexplicable. We've known for decades that neurons can regenerate, albeit very slowly, so it stands to reason that eventually the brain will heal enough to reconnect the networks that communicate with the outside world. Are physicians simply not being taught this? Or do they fail in their reasoning because they know what they know and they know that they've never personally communicated with these patients and people in vegetative states haven't woken up in their personal experience ergo they won't unless by some miracle? This limited reasoning includes the idea that invisible family bonding and communication cannot be relied upon as medical knowledge.

We have a failure to listen to and respect patient experience.

Physicians and other health care providers would not be shocked when reading this article if they listened to their patients and the families and/or friends who loved them. A few years ago in Canada, there was an egregious story about a family who insisted that their father who was in a vegetative state was aware, but the physicians caring for him were so belligerent about their idea that the family was hallucinating and that such a thing was simply not possible that they took them all the way up to the Supreme Court of Canada for the right to substitute their expert opinion for the family's experience. Fortunately, the Supreme Court of Canada sided with the family. Unfortunately, physicians and experts continue to substitute their own limited thinking based on their lack of respect for human resiliency and the powerful instinct for self-preservation, for the patients' personal experiences related when they can finally communicate and their families' knowledge based on their personal experience prior to injury and their invisible bonding. They also ignore how little we know about the brain and even less about the power of human bonding that allows a selflessly loving person to know what their unconscious loved one is feeling or wanting or thinking.

In a Globe and Mail article "What makes a life worth living?" a professor opined:

"Prof. Arthur Schafer, founding director of the Centre for Professional and Applied Ethics at the University of Manitoba, says most Canadians would be "horrified" at the prospect of being stuck in an irreversible coma or vegetative state, and he believes most would wish to end their lives in such a situation.

"The obvious question is: What would be the point of keeping me alive in a condition where I can't possibly benefit from aggressive, life-prolonging medical care?" he says." Globe and Mail, 16 June 2017

People who've come out of vegetative states want to live. I don't recall reading about someone who said they wished the doctors had killed them. The New Scientist editors wrote:

"We have learned from those who are locked in (fully conscious but unable to move much more than their eyes) that they can be happy and have a greater sense of well-being than people who aren't locked in."

How does this professor, like the physicians at Sunnybrook Hospital who took their case to the Supreme Court of Canada, come to believe that their inability to imagine states not like their own and their limited intellectual knowledge of the brain are superior to patients' lived knowledge?

As the New Scientist editors wrote, the key to greater happiness is: ". . . when [those with locked-in syndrome] get the chance to participate in the world, through the support and interaction of those around them."

This key applies to every person with brain injury. Our recovery depends upon physicians taking the time to listen to us and believing our internal experience is valid medical knowledge. Yet our personal knowledge of our brain states such as brain injury anger or inability to respond are ignored or diminished. Our desire to live with purpose and integrated in society is ignored and abandoned by all who do not support and interact with us. And in that ignoring, our futures are lost. For some, their very physical lives against their personal wishes are erased.

Health care communities respond to traumatic brain injury including concussion with variations on denial of symptom severity and Pollyannish predictions of the strength of strategies to restore one to normalcy while, at the same time, sidelining us to day programs out of sight of society. They transform our physical injuries into DSM-V personality issues or mood disorders such as depression then blame us for our predictable difficulties. Or they give us only life support. What they don't give any of us is brain stimulation and intensive interaction intermixed with appropriate rest periods from day one. They deny us diagnostic scans that are appropriate and revealing of our true brain states -- the very kind of EEGs that've revealed people in vegetative states are aware and conscious. They also seem to believe they know much more about the brain than they actually do. The brain is the final frontier. We don't even have a proper anatomical understanding of it as evidenced by the fact yet another part of its anatomy was only just discovered. This begs the question: have we discovered the whole of its anatomy and physiology yet? And in the face of such limited objective knowledge about the brain, why do physicians continue to ignore patient experience?

"However, to identify covert consciousness, you need to use functional MRI (fMRI) or several EEG tests over time to verify brain activity that reflects comprehension and the capacity to follow commands. "But we're just not screening patients for this level of higher function," says Schiff. "And it's not that hard to find them when we do.""

It's not only people in a vegetative state not being screened appropriately, it's also most of us with diffuse axonal brain injury, and as a result, we have no chance of regaining our cognitive abilities and ability to respond and interact with the world in real time. EEGs are used for epilepsy and sleep disorder diagnostics. They're far cheaper and easier on a patient than an fMRI or any other kind of MRI or SPECT or PET; yet psychiatrists and neurologists deny these essential diagnostics and prefer the subjective Glasgow Coma Scale, DSM-V, and neuropsychological testing. Why so biased against objective testing?

Again, I go back to their lack of respect for patient experience. They don't see our experience as a valid source of knowledge. If they did, they would no longer hold to strategies-as-treatment but learn from other professionals on how to stimulate brain regeneration; they would order qEEGs (and other appropriate scans) immediately upon injury and use this technology for continued reassessment over time; they would advocate for us to receive government medicare for qEEGs, SPECTs, DTIs, active treatments, passive at-home treatment devices, and community care that allows us to participate in society while they treat our neurons; they wouldn't sideline us to day programs but create programs that both provide hands-on care while allowing us to participate in society as we heal and strive towards regaining dreams or new purposes. They wouldn't substitute their lack of experience with resiliency after trauma for what a person wants and then call it ethical care. And they would never give up trying to build communication bridges with people in vegetative states but listen to their loving families or friends who know them at an unknowable bonding level.

Copyright ©2019 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.


Thomson, H. (June 28, 2019) Hidden consciousness. New Scientist. Page 38.

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