Family physicians have become the arbiters of disability, and it’s a tough job.
Fam Pract Manag. 2006 Mar;13(3):18-20.
As physicians we must be constantly vigilant for signs that our treatments are having deleterious effects on our patients. Our prescription for Vioxx might help symptoms of osteoarthritis, but is it also exposing our elderly patients to greater risk of a heart attack? Or does the convenience of monitoring urinary output with a catheter really justify the risks in the elderly of urinary tract infections and falls? In recent years we have made great strides in recognizing these unintended consequences of our therapeutics, and in changing our own ingrained behaviors in response to the new data. But it might be time to widen the net of inquiry, for not all adverse reactions are pharmacologic, and not all mistakes involve errors in diagnosis or treatment. In particular, there may be some instances in which we disadvantage our patients by categorizing them as disabled.
This question has been on my mind since a young man came to me recently for his yearly physical exam. Ricky1 was a healthy adolescent who was doing well in school and reported no problems. However, on the day of his visit, three support personnel accompanied him in my examination room. Ricky had been legally deaf since birth and had only limited hearing with hearing aids. He is a student at a local state-run school for the deaf.
Despite his years at the school, Ricky’s sign language in my office was slow and rudimentary. He signed to an assistant, who translated Ricky’s sign language to another interpreter, who then spoke to me. When I answered, the speaking interpreter translated my words into signs and signed them to Ricky’s assistant, who then signed to Ricky. The last person in the room was Ricky’s counselor, who could speak to me and sign for Ricky. The counselor filled the role traditionally occupied by a case manager.
I asked Ricky about his activities. He did not have a great deal of contact with his family because he lived at the school. He did not participate in organized athletics. He had no plan to go to college and was not interested in a career. In many ways, Ricky was similar to many of the hearing patients of his age I see. He preferred playing computer games to studying and became embarrassed when I asked him about girls. His sweatshirt bore the logo of his favorite NASCAR sponsor. Yet none of my other teenaged patients have three professionals helping them. Since my visit with him, I have puzzled over the question of whether Ricky was better off because of all the attention the state was lavishing on him. Could all of those helpers actually be keeping Ricky from learning about his intrinsic resourcefulness?
I wonder if the “help” we give to the otherwise-abled members of our society is occasionally an impediment to their success? Recently, a friend told me about his great-uncle Lincoln. Lincoln was born deaf around the turn of the century, at a time when most hearing-impaired children were shipped to special schools and had little interaction with the hearing world. Lincoln’s father wanted a different fate for his son. When Lincoln was 4, he employed a governess and insisted that she teach the boy to lip-read and to speak. Lincoln worked with the governess as he grew, and eventually he took his college entrance exams. He went on to become the first deaf man to graduate from a hearing college. Lincoln continued to pursue his dream to become an architect, which led him to advanced studies in France, where he learned to lip-read in French.
One family story about Lincoln’s ability to function in the hearing world holds that the middle-aged Lincoln was having a conversation with a fellow passenger on a train. The train went through a tunnel and Lincoln had to ask his new friend to repeat himself. The stranger was puzzled – after all, there was no unusual noise in the compartment. Lincoln explained, “You see, I am deaf and I have been reading your lips. I could not make out your words in the darkness of the tunnel.” Not surprisingly, the man was floored.
Clearly, not all members of our society have the same benefits as Lincoln. Not every father can afford to keep a governess for his child. But Ricky does not suffer from a lack of resources. He had three people working with him in my exam room, and the teacher-student ratios at his school are similar. Nor is he lacking from any medical perspective, save for his diminished hearing. Ricky is a happy, healthy and bright young man. It seems to me that the impediment to Ricky’s success lies not with his attitudes or intrinsic abilities or even with the amount of money we as a society have to support his care. Instead, our attitudes and expectations may be contributing to Ricky’s muteness and isolation.
Like it or not, disability determinations are common in family medicine. We write work restrictions, decide whether athletes can safely participate in sports and deem whether individuals should be eligible for driver’s licenses. Without exception, we carry out these tasks with the best interests of our patients in mind. Perhaps in some cases, such as Ricky’s, it is not actually in the best interests of our patients to define them as disabled.
And so I was faced with a similar dilemma when an elderly man walked into my office the other day. His chart said that he had osteoarthritis of the knees, but as I looked more carefully I saw that he had never undergone any workup. Instead, Bill seemed to have arrived at our institution five years ago carrying the diagnosis and it had become gospel. Bill carried a cane with him, though he used it more for gesticulating than for walking. His joint spaces looked great on the knee films I ordered. Bill had not come with the hope that I could cure him; his chief complaint was that he wanted me to renew his handicapped permit. “My knees? Nah, there is nothing wrong with them. I tore them up playing football as a kid, and there is no making them better now. I just want to have to hobble around less.”
As it turned out, Bill primarily disliked having to walk across the parking lot to his car. I explained to Bill all about the symptomatic benefits of exercise and good knee strength. He nodded appreciatively. I told him, “You can take control of your disease, too.” And yet, as we wrapped up he reminded me, “Are you going to sign the renewal for my permit?” I looked up at Bill’s normal X-rays hanging incriminatingly on the light box, looked at him and then at the cane sitting in the corner, unused. “Bill…” I began, planning my gentle refusal of his request. Bill was having none of it. “I just won’t be able to get around without it,” he said firmly. Then, catching his opening, he went on, “I really need it.” I sighed my assent, nodded and then took out my pen.
WHAT DO YOU THINK?
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1. Patient names have been changed to protect confidentiality.
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