Looks

Evelyn by Susan Jansen

As people struggle with the challenge of physical disabilities, what part does feeling good about their appearance factor into their ability to work towards regained function?

We like to envision ourselves striding into a conference or social gathering with it “all together”: the clothes, the hair, the pose and the savoir-faire. Whether in informal business attire or street chic we love the power of looking good.

One day at a residential and out-patient specialty center I was introduced to an attractive and very well dressed mother and daughter seeking therapy services. The daughter who was 21 years of age had sustained a head injury during a motor vehicle accident the year before. As the mother spoke her daughter nodded with “yes, yes”. She had been attending a local private university and it seemed was on track for a very good life. Now the mother just wanted her daughter to appear pretty.

Seeing the young woman walk I understood the concern. She walked with a cane, a flexed arm and a stiff leg. From their point of view, like an ‘old person’. Not vibrant, attractive, sexy, not like a prospective wife and mother. Although treatment strategies have evolved since then, the desired results would still be unattainable.

Today I confine my clinical practice to those who are 85 years or older - the elderly. If you haven’t reached that age yet, you might think folks should be pleased if they could walk at all. You would be wrong. There are several reasons older persons start to withdraw and become isolated – how they appear is part of that progression.

Currently I work with a delightful 88 year-old who has had several joint replacements, continuing degenerative joint disease and a few other assorted conditions. She is well educated, continues to be involved intellectually, a wonderful take charge and let’s do it sort of person. But she doesn’t like to mix and mingle much. She has been relegated to using a 4-wheel walker, useful but not elegant. She’d like to use a cane “more practical” she says out loud, but “more acceptable” to herself. To meet this concern, periodically, I have her perform walking trials with a cane – not only borderline unsafe, but inefficient, taxing and ungainly.

This past week when I greeted her with the requisite “how are you doing”, she responded “Fine, but. . .” and described how someone - a gentleman - she regards highly mentioned that her last knee replacement had not worked because she was “walking so badly”! Even with prompting about the accolades from neighbors - all women - who believe she is doing well, to her she is not doing well enough.

Although not a typical candidate I gave her instruction in using two canes (which luckily she had) and within the first 3 feet of using them she positively radiated. She wanted to walk down the hall, walk all the way down and back. Frankly, she looked aristocratic. She then enthusiastically performed the strength exercises she is supposed to be doing on her own; and willingly made an appointment to re-see her orthopedic surgeon about a lingering knee problem.

This is not a miracle or a feel good story. Physical therapists are frequently involved with gait training interventions. Sometimes the person has no residual impairment or altered pattern. But many develop a new pattern of walking and some find that acceptable and may even be grateful. Others will want to look good, as well. I was not able to help the college student twenty-five years ago. Today I have given my elder patient some hope, something to look forward to.

What I can’t control or even anticipate is the audience that each of these young and elderly woman have in their lives. There is a complicated interaction we have as we move through our day with those around us. Until we are good at something we may prefer to be by ourselves, but once proficient we want to show off. Trying to look good for others when one has a physical disability may be part performance, part learning. The late Robert Zajonc (1) put forward a literature review on social facilitation theory in the mid-sixties. It might be time to dust off this topic again. We have increasing numbers of people living with physical disabilities for longer periods of time. To face this challenge we need durable understanding about the person and their audience.

(1) Zajonc, RB, Social Facilitation, Science, New Series, Vol. 149, No. 3681. (Jul. 16, 1965) pp. 269-274.

Art courtesy of Susan Jansen. Ms. Jansen may be contacted at susanjansen@gmail.com.

Take It Easy

I spent my Sunday afternoon with 15 delightful women, most over the age of 80. I had been asked to speak on the importance of muscle strength as one gets older. The audience was attentive. I had handouts in large print, big photos - almost posters - to pass around and a portable microphone. They appreciated all of it. After the introduction, I reviewed the value of muscle strength training for older persons. Good review for this group.

Then I started with muscle strength and posture – it was a palpable response. I have an uncanny ability to alter my posture to exemplify altered function. When I “stooped” the group leaned forward, nodded their heads and some exclaimed under their breath “why, that’s me”, or “that’s how I look”. I demonstrated the muscles that control that part of our posture and immediately the attendees felt they’d gotten their monies worth (the session was free!).

There was more to the seminar: a self-assessment of functional decline to use when visiting their MD; physical assessment related to specific strength exercises; and tips on strength training itself. One of the first to break the ice asked “but my doctor told me to take it easy”. “How long ago?” I asked. “Years ago”.

Frankly the person asking the question didn't know how to interpret what was easy and what wasn't. Would they hurt themselves, do damage, set back their functional level, get sicker, or need more treatment? Better yet, could they self-determine what was their threshold for: motion, exercise, and amount of resistance?

With demonstration, feedback and guidance several of the women experimented with their ability to perform a movement with and without resistance. They were able to detect their limits and what they could do on their own. It took a few minutes.

We clinicians do not know how people will interpret our cautionary instructions. One of my elderly patients was told to keep her head straight due to extensive degenerative changes in her cervical spine. She heard “keep your neck stiff” and she complied. This resulted in reduction in head turning, muscular tightness and lingering pain. She thought it came with the territory.

We can not, nor should not, abandon the use of precautions. We can give simple tips. We can explain that this instruction should be reviewed. This is one of the times I recommend that a physical therapist’s input should be sought.

Trailhead

My town is embarking on an opportunity for change. But we have been misled before. So much so, that we aren’t easily swayed. We want change, and we want to work on it now. But underneath and all around us are those damn crevices, towers of great information that are difficult to break down or break through, systems that prevent serendipity. (1)

There is nothing like a really good idea. An idea that makes sense, builds on itself, allows for adaptation. I start with an idea trail. It begins with one thought, and then another. Some link, some don’t. Eventually I apply smart program development criteria. But in the mean time, I talk it up with folks from different paths and places. Then I suggest we have coffee somewhere near where the idea has the greatest meaning. Frankly, here is the secret. With putting the right folks together, a wonderful set of ideas will be created which can become a working concept. Inclusion of all these disparate sectors results in: buy-in, feedback and self-evaluation and, of course, best methods of implementation.

Here is an idea. A pediatric specialist changed positions. She worked at a community based center providing needed and (essentially) free services to children with developmental and orthopedic problems. Now she works in the neo-natal intensive care unit (NICU) literally down the street where all the kids she had been working with started out in life. Right away she was able to share with them what ‘what happens if’ feedback, e.g. prolonged position of the child for feeding and airway protection causes residual impairments. This interaction should be going on without large-scale initiatives.

The idea trail. Given information about the local healthy community initiative, I wondered along with my dear colleague that there might be a connection not only between high risk NICU infants and lifelong disability but societal problems as well. Without hesitation, a list was generated: post-traumatic stress syndrome (PTSD) of the parents, the emotional delays and latent inappropriate teen drug use, severe funding cuts along with a void of strategic education and support for the high risk infants’ ‘first responders’ - their parents. Well, she shared the opportunity with her colleagues and they got inspired and the trailhead is established.

Now let’s apply some creative analytic thinking. What information might help the idea? Discard it, embrace it, or change it? It would be great if we could answer some assumptions, such as, is parental PTSD also related to income and residence or culture? How about the social sequelae of having been in the local NICU? Do most of the kids go to college, or have families of their own? What are the essential needs of the child after discharge, and are these services accessible and affordable, or even used? There are more questions, and questions beget questions. What would families of the children share? Why, the teachers in pre-school! As is turned out, the rehab facility down the road hadn’t shared their insights with their nearby colleagues until happenstance occurred.

This process doesn’t cost much, if anything. It certainly can happen quickly. Many who sit in organizational charts are comforted by lots and lots of detailed data; others just know the problem and need for it to be articulated. But we all suffer from lack of connectedness.

(1) Meyers, Morton A.: Happy Accidents: Serendipity in Modern Medical Breakthroughs, New York: Arcade Pub., Distributed by Hachette Book Group, c2007.

Old

How old is old? When you are 30, 55, 62, 65. . .dare I say 85? Well, I’ve never met an 85 year old who didn’t know they were old. What do 85 year olds know that we don’t? That after an accumulation of time, impairments (loss of hearing and vision the most likely) and cultural bias, they know that time has passed.

I have a dear friend whose career was consulting with specialty medical practices around the United States on how to improve their business. One might think the job entailed how to bill more while doing less, or maximize billing, or promote the latest medication or procedure, but this was not what he spent his time doing. He spent his time reminding the personnel in the physicians’ offices - including the M.D.’s - who the patient was. I had the opportunity to observe him at a very large ophthalmology practice located in a well to do senior retirement community. A critical stumbling block to patient use of the practice was that the forms were all printed with small 8 point type size. True, every question was on the page but of course the ophthalmology patient had a tough time reading and then completing it. My friend the consultant knew to look at this, as he’d found this many times before.

The rate of hearing loss in those of us over the age of 65 is one in three (1). And the likelihood is that we will need services - social, medical, or legal - is undoubtedly 100%. But almost no one is expected to accommodate this loss of hearing. I walked into a nursing home’s therapy department a few weeks ago and saw one of the clinicians talking to their patient using a microphone. That was unusual. The patient wore a headset, and offered those who spoke to him a microphone. He couldn’t hear without it, but could hear fine with it. Simple, cheap, let’s order them for everyone!

We are getting older. And we will achieve the status of being old. But the duration of old age seems so much longer because the world keeps behaving as if we are aging in the opposite direction – as if our vision is more acute as our medical needs become more complicated, and as if our hearing gets sharper in new and noisy surroundings.

Failure to accommodate for one’s capabilities seems likely to continue unless, of course, those of us in our young adult and middle years begin to observe how one’s time is spent differently. In other words, experience a moment in time from another’s point of view. Otherwise, life gets old fairly quickly.

(1) Surveillance for Sensory Impairment, Activity Limitation, and Health-Related Quality of Life Among Older Adults -- United States, 1993-1997, Morbidity and Mortality Weekly Report, Vincent A. Campbell, Ph.D., John E. Crews, D.P.A., David G. Moriarty, Matthew M. Zack, M.D., M.P.H., Donald K. Blackman, Ph.D.

Relax

“Just relax, this won’t hurt” and then the skin is pierced, the tissue squeezed or the joint twisted. The word relax is related to the word laxative which is related to the word many say after the doctor, nurse or therapist say “just relax, this won’t hurt”. A person might just be reluctant to participate in further care.

Although, I’m not an etymologist, I do wonder about the words we choose and the expressions we depend on when treating patients. Another is, “don’t worry”. To worry is to think about the future as in, what will happen if I have this test, or take this medication. Naturally, most of us do not want to be in a chronic state of worry but given what life presents us, to worry may be an appropriate response.

And then the movie-like dialogue “you’ll never walk again”. I had a patient over 30 years ago, whose pelvis was partially severed along with multiple crush injuries due to an accident on a freeway shoulder. While she and her husband were outside their parked car, on a slope adjacent to the freeway trying to figure out what caused the breakdown another vehicle rammed through them.

I met Eleanor approximately two and half weeks later after she’d coded and been resuscitated numerous times. I was a weekend therapist, the first P.T. to have seen her. When I introduced myself she forthrightly stated, “I’ve been told I won’t walk again, but I will. Do you want to help me?” A marvelous person, determined, willing, knew things would be difficult, knew things would hurt.

Now my work is devoted to keeping the frail elderly in my community mobile. For some, they want to drive a car; others want to use a 3-wheel rather than a 4-wheel walker when attending a luncheon outing. Each knows – at some level - that they may not achieve their desires and they know they don’t have much time. To tell them “not to worry” would be disingenuous but to tell them “to worry” would be thoughtless, if not cruel.

A few decades ago there was discussion in my profession about what skills or behaviors were found in a master clinician. Distinct attributes would be culled and analyzed to replicate in future generations. A part of my definition of a master or effective clinician is one who develops a basis for trust with each of their patients by providing useful information. When I move this leg, Mrs. Connelly it may be uncomfortable; let’s try to avoid that by doing it this way. Or, I know Mr. Grant you want to return to driving, here are some things you need to be able to do to drive safely.

As a doctor, nurse or therapist you say you don’t have the time to prepare your patient for a test, treatment or decision? How would you rather spend your time?

Eleanor not only walked – but devoted her life to volunteering at a hospice near her home. I was teaching a course on the Psychology of Disability a few years after working with her, and was able to renew contact. I asked her to visit the class. Not knowing she would be a guest, I’d prepped them about the accident event, the extent and nature of her injuries, the rehabilitation effort. I played an audio tape that I’d asked her to make at the time about her near death experience. And then, she walked in the room, sat down and spoke to the group about what it means to own one’s life.

Broke

Students at the school in my neighborhood who are without health insurance can’t get fractures fixed. The scene: the child comes running in from the playground cradling his arm, goes to an adult who directs him to the nurse’s office, but because there are school cuts she’s not in so the principal calls the parents. The parents arrive quickly and take the child home. They apply warm compresses and salves. No, they do not go to an emergency room. No way to pay.

Plans are underway to gut Medicaid, our societal safety net for healthcare. It’s going to be broke and once cut, there are no plans to fix it. We can fight in many ways- or can we? After letters voicing our outrage, what can we really do? If we are health professionals we could start voicing alternatives, best ways to use a shrinking budget, strategic and tactical methods to spread the budget effectively over the largest number of people. In addition, we could attend planning and action meetings in our community and voice concerns and options. We can volunteer to sit on panels and commissions. State health departments could help some of us remobilize to perform critical community based services.

Some of us already do this; some of these methods are in place. Now we need to link them together as a cohesive service. Who are “we”?

View

I’m still taken aback, that after 38 years in practice as a health professional, that what a patient tells me is not what they report to their family. It is not because they have two faces or a peculiar cognitive condition. It may be that the patient has become the interpreter of medical events to their outside world. Isn’t that worth pondering?

The trajectory of medical and health services begins with the point of view that the person (the “patient”) seeking those services has also given them high priority. The healthcare professional proceeds on the following:

• Once in a patient-clinician conversation we think that the person believes we know more than they do.

• And, because we are knowledgeable we believe our corrective procedures will solve the problem.

• The problem solved?

If in the conversation of treatment the patient balks, changes subject, or dismisses the topic what is our response? Become more emphatic, offer mild threats or do we check to see if we are in the ball park?

Imagine what they are telling their family, friends, and neighbors. That the solution was a one-week stay in a place that neither speaks their language or serves their food and comes with a 2-hour surgical procedure that it will takes weeks to heal from. Or, that they will need to secure transportation, have family take a loss of half-day’s pay, travel to an unfamiliar place and repeat 3 times a week for months. Everyone shakes their head and then offers their suggestions.

Arthur Kleinman, psychiatrist and medical anthropologist lays out eight questions to prevent us from continuing to miss the boat. Many other sages remind us that we need to change our ways and not measure compliance but the degree to which we can have a meaningful conversation and where that will lead us in clinical practice.

The patient as interpreter, the patient as conversationalist, the patient as source of wisdom is not a frightening prospect. Even with significant cultural, language, historic differences the patient almost always wants you to succeed.