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Even more personally devastating to a physician than having no therapeutic strategy to help a patient is losing communication with that patient. As I drove to the nursing home that Saturday morning, I was cognizant that my last visit with Craig had not gone the way I wished. Craig, 36, totally paralyzed, with both a gastrostomy and a tracheostomy, has been a patient of mine since I first diagnosed his amyotrophic lateral sclerosis (ALS) in 1995. In all my previous encounters with Craig, we had interacted easily, but that all changed when his voice failed. Now unable to move his limbs, write, or talk, Craig in neurologic terms was “locked in.”
From the first time I met Craig, 8 years ago, and had to tell him and his family that he had ALS, I felt an instant bond. He was so upbeat and warm. We talked freely about everything—everyday events as well as his illness. With each visit to my office, he relentlessly grew weaker, progressively needing assistance in walking, dressing, and eating. At the same time, his ability and desire to navigate gradually constricted, so that even transferring in and out of a wheelchair became burdensome. Unimaginable as it may seem to those who walk effortlessly, Craig found it most trouble-free to spend much of his time in his bed. Eventually, it was no longer practical for him to come to my office. I missed him and relied on frequent reports from his parents, who visit him daily, as well as from therapists and a family physician who manage his care. These days Craig spends almost all his waking hours immobile in a small room while attendants and a few visitors provide him comfort and companionship.
Before my last visit, during the turbulent time when he was experiencing constant …
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