2018 marks the fifth anniversary of my annus horribilis. It was July 9, 2013 when I fell into my coma. On August 25, I suddenly awoke, five days after being transferred to my first nursing home. It’s therefore fitting that last Friday I was sitting slack-jawed watching a segment on the PBS Newshour about a music therapy experiment in California nursing homes.
The segment begins with a focus on reaching and stimulating the minds of Alzheimer’s patients. My time in my second nursing home brought the plight of such dementia cases into a heartbreaking light. In a physical therapy session, I learned that the sweet old lady who spent her time endlessly grooming and otherwise doting on her baby dolls was given her first “baby” by an assistant physical therapist. It was his way of trying to reach a patient who in better days was a nurturer.
There is no doubt about the need for new techniques to reach the more than 50% of nursing home residents with Alzheimer’s. Still, I couldn’t help demanding of the inanimate screen, “What about coma patients?”
Moments later, the report seemed to respond to my prompt, as it transitioned into a discussion of the role music therapy can play for vegetative patients “once considered unreachable.”
I should’ve guessed the main thrust of the piece. Correspondant Joanne Faryon began by introducing 44-year-0ld Steven Nelson. Shot five times and beaten in a nightclub, Steven is paralyzed and unable to speak, with only the use of his left hand. He’s been in a long-term skilled nursing home for seven years. Faryon explains:
Just how conscious Steven is, how aware he is of his surroundings or even himself is unclear. Something happens when Steven listens to music. It makes him smile, and calms him, because there have been times when Steven becomes so agitated, he’s fallen out of bed. He is one of 10 Villa Coronado residents with traumatic brain injury given an iPod as part of a statewide experiment.
And here’s where I started to feel a bit agitated. It turns out this California music therapy experiment is aimed at patients with behavioral issues, primarily those with Alzheimer’s disease. I stayed silent this time, but my mind raced to what I knew about the importance of keeping the brains of the covertly aware stimulated.
My loved ones provided me a form of music therapy to provide mental stimulation at night and fill in the gaps between my near-constant visitation schedule. Keith purchased an iPod for me and a pillow speaker (it was set very low at night).
The music therapy provided a constant soundtrack for my coma-dream. Until I learned about this, I had wondered how I could’ve remembered my “imagined” songs in such Memorex detail, down to the last lick and lyric. All the while, my doctors pooh-poohed my loved ones’ reports of my increasing awareness.
What about people like me, I silently implored the correspondent. Oh ye of little faith (or none at all).
New research suggests music therapy could help with recovery in people with coma or in a vegetative state. It may even help diagnose consciousness, which continues to mystify scientists.
Studies have consistently shown high rates of misdiagnosis in vegetative patients, indicating there is more likely a spectrum of consciousness.
That is, they drift in and out. Caroline Schnakers is an associate clinical professor in the Department of Psychiatry at UCLA. Her work has demonstrated a 40 to 50 percent error rate in determining consciousness.
That’s when my jaw grew slack with astonishment at the exposure this issue was receiving in the piece. A moment later, Faryon sums up the stakes:
The impact of misdiagnosis can affect medical treatment, end-of-life decisions, and it’s especially important when it comes to predicting a patient’s chances of recovery.
I could feel my blood pressure begin to rise.
End-of-life decisions!??? More like life-or-death decisions. End-of-life is a term appropriate for the elderly and terminally ill. We’re talking about killing people research shows have a one in five chance of being covertly aware.
The segment then cuts to Professor Schnakers:
We know that the patient that in MCS, for example, minimally conscious state, I mean, have more chance, more likelihood to emerge or to get better than a patient that are in vegetative states.
Okay, calmer again. Though my pique quickly transferred to Steven Nelson’s clueless family practitioner, the spectacularly misnamed Dr. Ken Warm. He frankly admits that the nursing home doesn’t have the resources to evaluate patients for consciousness, which leads the correspondent to ask:
So, then his diagnosis of persistent vegetative state, is it actually relevant? Is it true still?
Stunningly, Dr. Warm responds:
It would be a lot of splitting of hairs, because he’s responding in a very limited fashion.
At the start of the piece, every viewer watched Steven’s face light up with self-evident joy, smiling from ear to ear the instant the music therapy headphones approached his head.
After the interview was over, the correspondent asked the physician to review his patient’s charts. Here is what he had to say afterward….
And I went and reviewed the criteria for persistent vegetative state, and it’s very clear that he doesn’t fit that.
For this you went to medical school?
These results, however, came as no surprise to Steven’s mother. After showing a clip of Steven singing at his grandmother’s birthday celebration, the correspondent explains:
Gloria Hawkins knows her son will never be this Steven again, but she wonders whether, with more therapy, he might be capable of interacting with the world around him, outside of this nursing home bed, in a more meaningful way. She believes Steven can hear and understand her.
Says Gloria as she looks down at the son she so deeply loves:
That’s what keeps me going. I know he’s in there.
The story concludes with Faryon intoning:
And she’s certain he can hear the music.
Yes, it’s true that many loved ones interpret reflexive movements as signs of awareness. Who could blame them? But in every case of covert awareness I know about — including my own — doctors have dismissed the observations of those closest to the supposedly vegetative patient. After all, if a patient is actually in a minimally conscious state, their awareness will flicker in and out.
Friends and family spend far more time with the patient than any other medical personnel. And they’re also far more familiar with their loved one’s personal tics. Yet, too often, doctors write off patients and never take a second look once they’ve decided they’re a lost cause.
Is the music Steven Nelson hears playing like a soundtrack to his coma-dream, as it did for me? Or is he intermittently fully conscious, unable to breach that final barrier to complete awareness?
(Though I wasn’t fully aware, I believe my dream-filtered awareness faded in and out. In all probability, I was in a minimally conscious state through much of my coma.)
Music therapy revealed that Steven was misdiagnosed as a hopeless vegetable. As I was. And the mental stimulation he will now receive may one day bring about his mom’s dearest hope.
Perhaps the ones who need consciousness-raising aren’t misdiagnosed vegetative patients but their blindfolded doctors.
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