Thursday, December 21, 2006

Folie à deux

Folie à deux is a psychological term referring to the situation when two or more people share the same delusion. Delusions are funny things, and difficult to disprove, particularly when more than one person starts seeing them.

This all relates to Mary, who taught me about love, and trust, and delusions, and perceptions - and ultimately what matters most.

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It seemed strange that the doctor didn't request physical therapy as well, I thought, as I watched Mary limp down the hallway in a traditional hemiplegic gait pattern while using a quad cane. I remembered practicing that Trendelenberg gait in college with my classmates, accentuating the weakness of the hip abductors. The difference here was that Mary certainly wasn't faking or pretending with her newly acquired gait pattern. A serious look was on her face, and her arm was clenched tightly to her side in an angry and tense position. In college I guess we really didn’t stop to think about the people behind those gait patterns as we pranced around late at night to study for a neurorehabilitation examination. It wasn't real then, but now Mary was very real.

Mary was 23 years old and studying to be a rehab counselor. She found that to be quite ironic: that she had studied to counsel people who were in her exact situation. Of course none of her knowledge gained could be applied to her own situation. The things you study in school don't seem real - at least not until they happen to a person.

Mary was engaged to be married, almost done with school, and then she had the CVA. Her CVA, or cerebrovascular accident, was caused by a burst blood vessel in her brain - a branch of the middle cerebral artery. The blood vessel supplied areas of her brain responsible for control of the right side of her body. As a result, she had significant weakness of her right leg, and her right arm was positioned in a reflexive position tightly held against her body. Her hand was fisted, and essentially not able to be used functionally for any purpose.

Mary’s fiancé never wavered, never stopped loving or supporting her - and although she found this unbelievable, all of her wedding plans went hurtling on to their conclusion. She felt as though her life had stopped, and that all these events were continuing along with her, but without her. She was not the same person.

At least she didn't feel like she was. Mary’s disability pained her deeply. One day, after returning to the therapy room following a bathroom break, I noticed that her eyes were a little glassy and red. "Mary, what is wrong? You seemed to be in a good mood earlier. Is something bothering you??" Mary broke down, crying. She told me, "In the bathroom, the paper towel dispenser says to pull down on the towel with both hands. And I can't." I didn't say anything as she leaned forward and cried into my shirt. I just held her. Sometimes that is all you can do.

Well, later that day I pulled off all the labels on the towel dispensers that said to use both hands. I still do, when I see them in public restrooms today. I know that Mary doesn't go into men's rooms, wherever she is. But I still always do it anyway.

Mary’s goals were relatively simple: she wanted all of her wedding videos and wedding pictures to look "normal." She did not want to have to wear an arm sling. She did not want her arm contorted and flexed violently against her beautiful wedding dress. And she did not want to limp or have to use a cane when walking down the aisle. She wanted her wedding to be "normal." "If my family and my fiancé are going to continue to treat me as if there is nothing wrong with me, and that all these plans are naturally going to continue on, then I am not going to be the one to burst the bubble." Mary wondered why everyone acted as though nothing had changed. Was this folie à deux? Or something more?

"When I walk down that aisle, I just want my arm to be relaxed. I don't want my shoulder to be hiked up. I don't want my elbow bent. And I don't want my wrist and hand to be so bent."

God bless Bobath, and Brunnstrom, and all the other therapists who designed the treatment techniques that are commonly used to decrease the muscle tone for a patient who has hemiplegia. Mary was intent on achieving her goals, and she wanted to achieve them badly. Every day we worked on activities that would meet these ends. We designed home programs. We made splints. We did everything I could think to do to help decrease the muscle tone in her arm.

Over time, a muscle that is in a constant state of contraction will begin to naturally shorten. Mary would have none of that. "Please stretch out my hand," she would ask. Please help me be sure that it will never get contracted, and stuck in that horrible position." Day after day we worked toward these goals, and over time, the muscle tone in her arm decreased. She didn't gain a lot of voluntary movement back in her arm, but she was pleased that it did not look deformed.

There were other issues that she wanted to address, and she would bring them to my attention. "Do you know how hard it is for me to put on a bra with one hand? Or to take care of my period? You just don't know!" She would laugh at me about this. "Well Mary, I am out of my league, and I think I need to have one of the other therapists work with you on that stuff." I was the only male in the department, and we commonly swapped patients for training when it came to such issues. Mary was very close to my age, and I was a guy, and most patients have some sensitivity about such things, so we of course would always accommodate for these kinds of situations.

Mary had a hurt look in her eyes when I told her this. "But you are my therapist. And I trust you." I didn't know what to say to that immediately, and she continued, "I'll tell you what. I'll teach you how to do it with two hands, and then you can help me learn how to do it with one." And that is what we did.

The spring turned to summer, and Mary's wedding date was fast approaching. She came to therapy one day and immediately blurted out, "I had the strangest dream last night, and you were in it. We were stretching my arm and my hand, and I remember so desperately wanting it to look normal. You looked at me and said, 'I think I know what I can do to help.' After stretching my arm, you told me to hold it over the table, and that you would climb up onto the table and jump down onto it. In my heart, I knew that this maneuver would break my arm, and that it would hurt tremendously. But I put my arm out over the table, and closed my eyes waiting for you to do it. I knew it would hurt, and I knew I would cry, but I trusted you. I knew that I could trust you. Anyway, the dream never finished, and that is all I remember waking up to."

I just looked at her. What are you supposed to say to someone who tells you that they trust you that much?

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The last I saw Mary was at her wedding, a couple weeks after her dream. I took lots of pictures, and her left arm is hanging loosely at her side, hand open. For those that didn't know her intimately, they would not know the severity of her disability from the way she looked.

There was no cane as she walked down the aisle. I never fancied myself as a wedding choreographer, but I suggested that both her Mom and Dad walk her down the aisle to present her to her future husband. With the support of her parents to the right and to the left, there was no side on which she could limp.

Mary met her goals. She looked beautiful in her wedding dress. No one could "see" her disability. So was this all folie à deux? I don't think so. Instead, it was all about love and all about people placing trust in a goal and caring for each other. And really, what is ‘reality’ and ‘disability’ when you remember to see through that kind of love?

Monday, December 11, 2006

Christmas messages as considered by a pediatric occupational therapist

I wanted to write some Christmas-theme entries this month but I ironically have not had the time. Life can sometimes get very busy.

Being busy is precisely the topic I wanted to discuss. Adult occupational behavior around the holidays is fascinating to study. I don't want to get into a lengthy treatise about the meaning of shopping - but let's face it - is holiday shopping a healthy or unhealthy occupational experience? Watch adults in the mall and you will understand the question.

Western societies are consumer-oriented. Corporations spend untold billions of dollars based on our classification as consumers. Consumer-focused messages are reinforced by cultural practices that remind us what grouping we are in and how that fits in with our status as occupational and social beings. So, I am sent messages that this is my 'prime' as a human being on the planet. These are my 'productive' years - I am past the tumult of young adulthood and this time is prior to the tumult of any aging issues. I have arrived. (trumpets sound). This is my opportunity to leave my impression. This is my time in life to BUY! At least the corporations think so.

I personally don't believe a word of it. It is a story that is a lie - and I have the pictures to prove it.

The pictures I am referring to were at my parent's home for years. They were taken in the late 1960s, and they are arranged side by side in a frame that opens like a book. Standing on edge, they complement one another.

A few years ago, as a birthday present, my parents had copies of these pictures made and gave them to me. They put them in a similar frame as the original pictures.

The pictures are of my brother and I, playing in the front yard of the home where we were raised. My brother's picture is on the left, and my picture is on the right. In some respects, the pictures are panoramic - we were facing each other but the background is a continuous scene. In the pictures I imagine I am only 3, my brother 5. I can tell I am that young for several reasons (my mom doesn't recall when the originals were taken). But my hair is still quite blonde (it really didn't start turning brown until school age) and there is that characteristic fleshiness around my fingers and hands in the pictures - the kind of soft and gentle pudginess you can notice when you look at the knuckles and the back of the hands of children that age.

Anyway, we are both crouched down (as an adult, I marvel at how children can play from this position for hours on end). Some large sized rocks are placed down along the fence that separated our yard from the neighbor's driveway. The lawn was thick, and an ivy and violet mixture grew along the fence, reaching into the yard.

Around the rocks is an aluminum pie tin, filled with an inch or so of water. And in the pictures we are maneuvering dinosaurs up and down the rocks, into the pie tin.

The dinosaurs are mostly red. There are a couple dull green ones. No realism here - not like toys that my children have today. Just plain, single-colored plastic dinosaurs. I am moving a dimetrodon. I see an ankylosaurus. One is rather fantastic looking - a brontosaurus-like dinosaur with wings.

If I close my eyes, I can remember playing with them. Remember the way they feel. Remember the warmth of the stone in the summer sun, and the coolness of the water that I would ask my mother to replenish when my brother and I went out to play in the morning.

My occupation at that time was to play. In that moment that the picture was taken I was a highly productive occupational being.

These memories make me question some basic assumptions that are made about my relative productivity at this time in my life. It makes me think about the occupations that I help children with every day. Which occupations really are of most value? What, exactly, constitutes human productivity?

So as I pause and reflect on human productivity and the false stories we are told about the economy of our species, sometimes I think that our most productive years are behind us. And we spend the rest of our days trying to recapture that same innocence and sense of wonder.

Christmas is approaching. We all have so many jobs to do - so many tasks to complete - so much productivity to achieve. Many of us as adults will be running around madly to find this or that gift and to get it all done 'in time' - we would all do well to stop and remember some innocence and wonder. Observe your children - and think of innocence and wonder as the intended output measures of human occupation.

I promise, it will put you in a frame of mind to receive a very different Christmas message than the one intended for the people in the shopping mall.

Monday, December 04, 2006

random thoughts on superstition, tradition, conviction and evidence-based practice in occupational therapy

For various reasons I have been called to task regarding an analysis of what I believe in - and I thought that the philosophical definitions are important so I wanted to yell them to the rafters, so to speak. Issues of internal consistency are important to me, so I was interested to find that my work vs. non-work need for evidence was quite different. I'm still not entirely sure how to resolve that issue – perhaps it is not important.

Anyway...

Superstitions often stem from folklore or historical reinforcement of confusion between causation and correlation. Common response experiences and confounding variables contribute heavily to confusion that is then reinforced through repetition. In this sequence of events, superstition translates to mythology and there is high risk for it to be further transmitted into tradition. I am aware of the debate, but count me among those who believe that 'folk psychology' is real. I know that eliminative materialists will take me to task, but I think hobbits know all about folklore. Even though superstition might be a true psychological model it probably is not be the best vehicle for scientific progress. We have lots of superstitions in OT - most notable is our historical explanation of what sensory integration exactly IS. I have recently referenced that we are making some progress on neurophysiological correlates of sensory processing disorders, but up until recently we had very little to say about real causative factors. Instead we have generated a lot of superstition around sensory interventions - from weighted vests to brushing protocols.

Beyond superstitions people also sometimes believe things because of tradition. Traditions are customs and practices that are passed on from generation to generation. The reason for continuing tradition is often for tradition's sake. Tradition is what Tevye uses to keep his family moving forward. Traditions contribute to identity and they certainly feel good - but again they are also probably not the best model for scientific progress. OT has lots of traditions too - like why splinting is perpetuated in our scope of practice. Tradition makes occupational therapists focus on upper extremities and physical therapists focus on lower extremities. Tradition, in part, perpetuates craft use as a therapeutic modality. Traditions can be good or bad; they can be restorative and generative or consumptive and pathological.

Conviction is a fixed or strong belief. I think the best synonym is surety - from the Latin securus - secure. I always like conviction, but the only problem is that conviction can be belief in anything, even if it is dreadfully wrong.

Evidence-based practice, as it is broadly defined, is the systematic methodology designed to integrate research evidence into the clinical reasoning process (Tickle-Degnen, 1999). Concern has been raised about application of a medical model of evidence-based practice to occupational therapy (CAOT, 1999). Where much of evidence-based practice in medicine is based upon broad epidemiological studies, the application to occupational therapy is more specific in that evidence-based practice should help clinicians “to make decisions about interventions that are effective for a specific client" (Law & Baum, 1998, p.131). This approach that combines evidence-based practice with the concept of client-centeredness has been reported in the occupational therapy literature (Egan, M., Dubouloz, C.J., von Zweck, C., & Vallerand. J., 1998).

Critical appraisal is a significant component of evidence-based practice (Crombie, 1996, pp. 1-2). Critical appraisal is the analysis of data that allows for a practitioner to engage in evidence-based practice. Where evidence-based practice is an end, critical appraisal supplies a means.

Tickle-Degnen (2000) identified the steps that clinicians must take in integrating evidence into practice, but it is evident that many clinicians are not fully participating in the process (Rappolt & Tassone, 2002; Dysart & Tomlin, 2002). This is important to the profession of occupation therapy because of the longstanding contract that we have with those who ‘consume’ our services. Patients and reimbursement systems both expect high quality, effective, and efficient care. Occupational therapy is at risk of becoming irrelevant unless the profession is able to convince consumers that clinical decision making is based on sound and rationale scientific data, and that this data is meaningfully applied to the individual’s life experiences.

The task of teaching skills of critical appraisal for evidence-based practice to clinicians is daunting. Clinicians are faced with time constraints, varying degrees of administrative support, challenges in being able to access ‘evidence,’ and lack of training in how to conduct critical appraisal (Tickle-Degnen, 2000; Ottenbacher, Tickle-Degnen, Hasselkus, 2002). I believe that we have a better opportunity for teaching evidence-based practice to students, as they are approaching their learning with more of a ‘tabula rasa.’ It is much more challenging for clinicians to ‘unlearn’ years of practice that is often based upon superstitions, traditions, or negative convictions. Still, all of our students do ultimately pass through clinical sites for their training, and for this reason it will be critical to send students to fieldwork sites that incorporate concepts of ‘best practice’ and who use models of evidence-based practice.

These are important issues – I think everyone should spend some time visiting them.



References:

Canadian Association of Occupational Therapy (1999). Joint position statement on evidence-based occupational therapy. Canadian Journal of Occupational Therapy, 66, 267-273.


Crombie, I.K. (1996). The Pocket Guide to Critical Appraisal. London: BMJ Publishing Group.

Dysart AM & Tomlin GS (2002). Factors related to evidence-based practice among U.S.
occupational therapy clinicians. American Journal of Occupational Therapy. 56, 275-84.

Egan, M., Dubouloz, C.J., von Zweck, C., & Vallerand, J. (1998). The client-centred evidence-based practice of occupational therapy. Canadian Journal of Occupational Therapy, 65, 136-143.

Law, M., & Baum, C. (1998). Evidence-based occupational therapy. Canadian Journal of Occupational Therapy, 65, 131-135.

Ottenbacher KJ, Tickle-Degnen L, & Hasselkus BR (2002). Therapists awake! The challenge of evidence-based occupational therapy. American Journal of Occupational Therapy, 56, 247-9.

Rappolt S; Tassone M. (2002). How rehabilitation therapists gather, evaluate, and implement new knowledge. Journal of continuing education in the health professions, 22, 170-80.

Tickle-Degnen, L. (1999). Evidence Based Practice Forum: Organizing, Evaluating, and Using Evidence in Occupational Therapy Practice. American Journal of Occupational Therapy, 53, 537-539.

Tickle-Degnen, L. (2000). Evidence-based practice forum: Gathering current research evidence to enhance clinical reasoning. American Journal of Occupational Therapy, 54, 102-105.

Tickle-Degnen, L. (2000). Evidence-Based Practice Forum: Teaching Evidence Based Practice. American Journal of Occupational Therapy, 54, 559-560.