Curiosity, Dialogue, and Knowledge
When it’s all said and done and therapy has run its course, what do your patients and their families remember? Was it a positive, growing experience for all involved? Is it important to correct all of the false notions a patient or caregiver has about therapy, recovery, progress, and the injury itself?
I believe that my therapy is best when I am equal parts educator and therapy guide. I have anywhere from one to six hours a week with my patients. Caregivers will spend closer to ten to twelve hours a day with their loved ones. It’s clear who has the greater potential impact.
The problem, of course, is how we all spend our time. Most caregivers run into several major problems when it comes to home therapy: they have no experience or training, they are overloaded with new and sometimes conflicting information, caregiver fatigue and burnout happen to the best of us, and due to the above reasons they often cannot focus on the most important treatment targets from a variety of disciplines.
Let’s consider a fictitious patient. A 78 year old man has a large middle cerebral artery stroke on the left side of his brain two weeks before I see him. He has severe aphasia (can’t talk/understand much), dysphagia (can’t swallow safely), a flaccid upper extremity and lower extremity on the right side of his body, and he has a host of comorbidities (other medical problems). This is what clinicians see in the history and physical that the doctor writes up. Given our experience, we begin to pigeon-hole patient X. We do this so that we can formulate a game plan. Perhaps we even look at his two sentence blurb on his social history. We see that he was a physics professor at a local university.
From my perspective, given the patient’s extensive area of damage from the stroke and the location of the stroke, I know that his prognosis is bad. If I confirm this with an evaluation that shows he has minimal to no communication skills (including all forms of language), then what do I do with this information? The same thing happens with physical therapy and occupational therapy. They will go to the chart, read the information, formulate a plan, test the patient, and come to similar conclusions about prognosis and functional abilities. This patient will have severe-profound deficits across the board. As a rehabilitation staff we will all agree that the future looks bleak and that drastic changes are on the horizon for this family.
From the family’s perspective, there is a shell of a man in front of them compared to his former lively, intelligent, and cantankerous self, but nonetheless he is still there. He is still their father, husband, brother, or friend. When the evaluations are being done, they look at every small difference, and recall all the positive events. Did his pinky just twitch? I think he said he’s thirsty! Ah, he makes that face when he wants the lights turned down. He really understands us even though he can’t talk. I’ve heard him say a couple of curse words very clearly, that’s a good sign right? When I found him this morning he had moved his arm all the way across his body! How long before he can move it again?
We have to be truthful. My father once told me, however, that telling the truth doesn’t always mean telling everything that you know. He wasn’t talking about omitting important information to make yourself look better, but rather omitting painful information to spare someone else’s feelings.
The thing about different perspectives is that often both are equally valid. As clinicians, we don’t know our patients as intimately as the families and friends do. That knowledge and background information is a valuable clinical tool that we can employ in and out of therapy if we realize we are in this fight together.
Sometimes in our zeal to provide realistic outlooks and the truth about a given clinical case, we forget that the families have zero objectivity. For clinicians, the important thing to remember about this dynamic relationship that we form with patients and their families is that we must collaborate, respect, and be open to look at things from different points of view. We might even realize that sometimes they’re right, and we’re wrong.