On Telemedicine

“Thank you for seeing me,” the patient said, softly. It was early October 2011, and I was sitting with my division director, Dr. D. He had last seen the patient a few months prior, in August, when her tremors and abnormal gait were diagnosed as Parkinson’s disease, a devastating neurodegenerative disease that slowly robs patients of their independence.

“You look like a new woman!”  Dr. D beamed, with a rapid crescendo of his voice.  She had fewer tremors today and could walk much farther without stumbling. The Sinemet was working and the side effects manageable. Her initial depression was less evident.

At the end of the meeting, Dr. D would have shaken her hand except that she was not in our office. He was in his office in Baltimore, where he directed the Johns Hopkins Movement Disorders Center. She was sitting in her living room in Panama, thousands of miles away. She was the first of many patients I was fortunate to develop relationships with as I coordinated their care with a movement disorder specialist via telemedicine.

When I first started working, I did not initially see how videoconferencing could replace the clinic. However, I soon realized that for many, the clinic simply didn’t exist. Despite the growing burden of neurodegenerative conditions, access to care was limited by the distribution of physicians. Though Parkinson’s disease has no cure, it does have inexpensive treatments that can greatly improve quality of life. These treatments typically require guidance from a neurologist or movement disorders specialist. However, forty-percent of Medicare beneficiaries with Parkinson’s disease have never seen a neurologist. This is unacceptable given that patients who see a specialist are less likely to fracture their hip (14%), be placed in a skilled nursing facility (21%), and die (22%) (needs citation).

As with any conversation about health policy and access to care, I can cite statistics until my voice runs dry. But those aggregate summaries don’t do justice to the individual faces of patients who have fallen through the cracks, who lack access because of where they choose to live. The patients I met were hard-working Americans living in rural Delaware, the rugged Eastern Shore of Maryland, California, and even other countries. Some were quite wealthy, others were rather modest in means. All were handling with great poise and perseverance the debilitation that dopamine death brought. Their stories touched me in unexpected ways and remain with me as I pursue the profession of medicine. I want to share one such story.

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Mr. M and his wife remain two of the nicest people I’ve ever met. But things weren’t easy for them. He was an early onset patient, diagnosed a few years before his fifty-fifth birthday. A successful career in sales was replaced by a continual life on disability. Though the medications were decently effective, Parkinson’s disease had had a few more years to assert itself due to his early diagnosis. It had taken away the height of his career, the prime of his life, and his rugged independence in a largely unceremonious way. It was not a disease he could survive and overcome, but one he would manage as it got worse with time.

A two-income family suddenly became one. He was no longer the primary breadwinner. His wife had no choice but to assume that role, at an awkward time when she was retraining to became a nurse practitioner. Some patients will hide the pain of their disease, perhaps focusing on the positives: their success on medication or more generally, their perseverance. Mr. M was not that type.  The emotional, physical, and financial strain on both himself and his wife was front-and-center every time he talked with me about his Parkinson’s. Money was tight, feelings were tense, but he had no choice but to make the most of it.

He had to come up to Hopkins every three months to see Dr. D. The Chesapeake Bay made any attempt to shorten the journey impossible. The drive each way was three hours of time, 150 miles of distance, and most importantly, as Mr. M liked to put it, “a whole nursing shift” his wife had to take off.

He enrolled in one of our telemedicine studies and was randomized to receive a year’s worth of visits via telemedicine in his home. He described that bit of luck as “a godsend.” I looked forward to connecting and talking with him every three months before the visit. He’d always have something to talk about.

“I think I’m going to call you V from now on,” Mr. M said, resolutely, during one visit.

“Um… sure?” I replied, hesitantly. My name had given rise to several nicknames in the past, such as Vinny or V-squared, out of convenience. My mom had always hated this since my name is religious, but I never cared that much. V seemed acceptable to me.

“Oh, I probably should explain,” Mr. M continued, reacting to my initial puzzlement, “since you aren’t from Baltimore.”

I nodded. He told me he was born in Maryland and spent his entire adult life hopscotching around the state. He grew up rooting for the Baltimore Colts until their bitter split with the quirky city it called home. Once the Ravens came to town, he became a die-hard fan. His eyes glistened behind his thin-framed glasses as he discussed their recent wins.

“Vonte Leach, man, he’s one beast of a full-back. He’s my favorite player,” Mr. M said, gently stroking his off-white goatee, as if whimsically replaying Leach’s best blocks for Ray Rice.

“People here call him V,” he continued. “I’m going to start calling you that.”

After that point, we’d talk Ravens football first thing; he respected that I held onto my allegiances to my beloved Buffalo Bills. I promised him that despite that, I had room in my heart to root for the Ravens too, especially Vonte Leach. Just by coincidence (or perhaps subconscious planning), he had a telemedicine visit scheduled the day after his beloved Ravens won the Super Bowl. He couldn’t stop smiling. Though I knew it might be short-lived, I was happy he had reason to smile.

Each time we connected with him, his beard seemed to have a few more white speckles, his face slightly more wrinkled, but he was no less appreciative of the experience. He saw the same specialist directly in his home, with software no more complicated than Skype. And while his depression still lingered, his motor symptoms dramatically improved due to carefully monitored medications and a budding interest in yoga and tai chi. He continues to receive his care via telemedicine, and his wife will soon start work as a nurse practitioner and educator.

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Telemedicine is merely a tool, not a magic wand that solves all challenges. There are geographic and socioeconomic barriers to care that even the most advanced technology cannot overcome. The digital divide is deep and telemedicine favors those with Internet access. And I admit the interactions did not always feel as organic as an office visit might. I did wish I could shake Mr. M’s hand to greet him, or give him a high-five to celebrate a Raven’s win, or pat his shoulder to console him. Telemedicine removed the sensation of touch and physical presence, and for some patients or medical specialties, that’s the ultimate deal breaker.

But for Mr. M and countless others we saw, it was a sacrifice they were willing to make to see the physician they needed to see. And they were offering something personal to us in exchange — an invitation to join them in their home, to hear their story in its most natural setting. Though I may never meet them again, I am grateful for the invitation they bestowed upon me and for the opportunity to serve them and become a part of their lives. And for that, I can’t thank them enough.