10. The Silent Witness
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What is Jake's extraordinary medical condition?
Jake is the only known person to survive stage four of acute toxic progressive leukoencephalopathy. That alone is extraordinary and something worthy of medical textbooks. But his survival isn't just about defying one terminal diagnosis. There's more to his story. More unexplained phenomena. More medical mysteries that challenge what we think we know about the brain and the limits of the human body. And Jake's case is forcing experts to rethink everything. Here's Dr. Brian Edlow, the neurologist who treated Jake at MGH. Dr. Edlow is the co-director of Mass General Neuroscience specializing in comas, disorders of consciousness, neurocritical care, and traumatic brain injuries.
Who is Dr. Brian Edlow and what is his role in Jake's care?
So I'm a member of the neurocritical care faculty at Mass General Hospital. And in my role as attending physician in the neurosciences ICU, I was in charge of Jake's care when he was readmitted to our ICU in the winter of 2017 for infection and for autonomic storming. One of several hospitalizations that he had during that time period.
So this was before Jake was put on hospice.
Now, it's important to point out that Jake's condition, the cause of his brain injury, was a rare one. It's one that we don't see every day in our ICU here or that any ICU clinician sees around the world. It's the kind of clinician that we go back to the literature to read about and to educate ourselves about to make sure that we're taking the best care of him we possibly can. But I want to acknowledge that because of the rarity of this condition, there is not a lot known about it in the clinical community. And therefore, we had to be humble and acknowledge certain limitations with respect to our understanding of what might be happening in Jacob's brain.
Dr. Edlow said that when Jake arrived to them, reports from other physicians at other hospitals stated that his level of consciousness seemed to be fluctuating at this time.
And so the diagnostic terms that had been used to describe Jake's current state was fluctuation between the vegetative state, a state of being awake, eyes open, but unaware of oneself in the environment, and the minimally conscious state, a state in which somebody has a slight level of consciousness that can be detected on the bedside exam. These were the different states that Jake was fluctuating between, the vegetative and the minimally conscious states.
I asked about the bedside exam and what a slight level of consciousness could mean.
So the bedside behavioral exam is always our most important tool for detecting signs of consciousness. We assess somebody's level of arousal or wakefulness. Can they open their eyes? If so, do they do so spontaneously or do they need some stimulation to wake up and open their eyes? In Jake's case, his eyes would open spontaneously, so we knew he was awake.
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Chapters
8 chapters
1
What is Jake's extraordinary medical condition?
1:43–3:10
2
Who is Dr. Brian Edlow and what is his role in Jake's care?
3:10–5:51
3
What does it mean to be in a vegetative or minimally conscious state?
5:51–8:25
4
How do doctors assess consciousness in patients like Jake?
8:25–14:35
5
What challenges do MRI and EEG present in diagnosing brain injuries?
14:35–22:08
6
How does Jake's brain injury affect his awareness and response?
22:08–23:56
7
What uncertainties exist around Jake's diagnosis and prognosis?
23:56–29:37
8
How do medical professionals approach end-of-life decisions in cases like Jake's?
29:37–37:38