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“Fluctuation is the norm”
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“We expect fluctuation in this patient population. Fluctuation is the norm. We don’t expect consistent performance.” |
Physical Therapist, 7 |
| Describes practitioners’ experiences of clinical reasoning about diagnosing patients’ levels or states consciousness by searching for consistency and making sense of ambiguous patient responses to describe their recovery |
| “I had a patient, he was in our emerging consciousness program, and he was making some gains but still wasn’t consistently following commands … he was here for 12 weeks and for the majority of that time he was kinda at a similar level and … it was just very variable. One day he seemed to be occasionally responding or doing things more consistently, while other days he was doing nothing.” |
Physical Therapist, 8 |
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Searching to observe consistent responses to stimuli as indications that the patient is improving |
“You know, is she consistent? Is she truly consistent? Like 100% consistent? Or is she still inconsistent enough where you’d say she was technically still minimally conscious? Or had she truly emerged into that conscious state?” |
Physical Therapist, 7 |
| “I can remember when [patient] would follow a command for the first time. [I thought] ‘Whoa, did they actually just do that? Did I actually just see that? Or was that sort of random?’” |
Physical Therapist, 7 |
| “What I typically like to see when I’m following patients is, you know, that they are beginning to show some localized and purposeful activity. We might start to see first some sort of intentional motor cognitive behavior and then that that’s consistent. You’re seeing that consistently and then that’s kind of building into even more than that. Either following a command, like a yes/no or whether that’s nodding or thumbs up or thumbs down. So something consistent.” |
Physiatrist, 16 |
| Collaborating with others in teams to identify consistency of responses thus documenting level of consciousness |
“as a team we talk about [possible change] and I’ll say ‘I am seeing a localized response, they are localizing to this’… and speech may say ‘I see that but I’m not seeing it consistently.’ So that is why sometimes we will wait until it’s consistent cross disciplines before we jump between levels [of consciousness.]” |
Occupational Therapist, 6 |
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Observing nuances in patient responses, and grappling with unexplained recoveries or stalls in patient progress. |
“is more of a gradual thing. I don’t feel like one day you walk in and they are emerged. …we’re doing serial daily exams on the person and nursing is getting a 24/7 view. You have all this information that you are gathering all the time; so in my experience I would say it’s more of taking all of that input in and it’s not a black and white thing.” |
Physiatrist, 16 |
| “I feel like it’s usually a pretty long and slow process and [patients] go from kind of a vacant stare with no recognition and no following or tracking movements. Usually the first thing we see is some sort of eye contact, some sort of effort to follow an object, or just pulling away if you touch them, or if you put your hand in their hand and they respond in some way with a hand movement. Usually, those are kind of the first signs that I start to notice.” |
Recreational Therapist, 11 |
| “Mr. Jones was our worst-case scenario patient. We, maybe, expected that he might regain some small level of function; and [yet] he’s functioning on a level that no one can explain.” |
Recreational Therapist, 11 |
| “He never tracked in any way, he never focused on anything. At one point we were suspecting, ‘could he be blind?’ Because no matter what, we never saw anything visual with him.” |
Speech Language Pathologist, 1 |
| “[Patient] is really doing well from a physical perspective; much beyond my initial expectations were. So, it was actually a really good learning case for me because I thought I knew a lot at that point in my career and it was a good reminder to me of the things we don’t always know.” |
Physical Therapist, 7 |
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“Trying Stuff”
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“I was trained by my colleagues to just try stuff. Because there is a lack of research with disorders of consciousness as far as interventions that actually work. A lot of the times I feel like we are trying stuff, and we are just [waiting to] seeing what happens.” |
Occupational Therapist, OT4 |
| Describes what practitioners do in spite of uncertainty in the face of paucity of empirical evidence and brings to the surface that practitioners go outside their canonical training in order to make treatment decisions |
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“So my intern went ‘stop, collaborate,’ and he stopped and the patient mouthed the word ‘listen’. We didn’t hear anything at that time, but as we continued on with the song, [the patient] would finish the sentence and gradually we started to actually hear him verbalize the right word. So, we had tried everything, including songs that his wife said he liked. He didn’t respond to those, but this was a song that he would have known as a young teenager, like 12 or 13 years old. And so somehow it stirred something different.” |
Recreational Therapist, 11 |
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“The patient’s head was down and he wasn’t making any eye contact or an effort to raise his head. And when the dog came in, we had to cue him to look, and then he raised his head and his eyes widened and he started to smile. And then when the dog came closer to him, he leaned in towards the dog more and when we put his hand on the dog’s head, we saw him moving his fingers as if he was trying to scratch. He wasn’t able, at that point, to reach purposefully to do it, but when we put his hand in place, he moved his fingers. His sustained attention was longer when the dog was there; I could get him to really focus for ten to fifteen minutes.” |
Physical Therapist, 6 |
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“I’m a very non-traditional, sort of out of the box therapist, and sometimes what these young males respond to is not necessarily a clinically standard and appropriate type of approach. There’s a TV show called “Jackass” where these guys do ridiculous things and oftentimes they’re just gross and inappropriate and in every way unacceptable behavior. But, I get a better response from “Jackass” than I do almost anything and so I put it on for this young man. . . . The first thing that I noticed, he was watching the screen and not just sitting there, you know, just unaware. He was focusing on the screen and he smiled at an appropriate time. So he recognized that the moment was funny and he smiled at the right time; and so that was my first, I guess, sign that he was starting to emerge.” |
Recreational Therapist, 3 |
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“There was singing, there was praying, there was shaking of rattles and drums and things like that. There was two people working with the patient and then two people that worked with his wife. They did breathing work with the wife to release emotional stuff and they did some massage. There was prayers in the Christian tradition and prayers in the Mayan tradition. Overall, it was a very emotional and amazing experience. The patient had been here for months and had no real response that we could see. So, immediately after that experience, he kind of went into this even deeper sleep, it was like he was knocked out for three days and on the third day when he woke up, he was present. His eyes had changed. He was tracking and showing responsiveness and he just went on this remarkable recovery process that nobody here can explain it. People talk about it and nobody has an explanation. People say it was, he was a miracle.” |
Recreational Therapist, 11 |
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“we need to try and stimulate [patient’s] level of alertness in any way we can.” |
Physical Therapist, 7 |
