“We don’t expect your son to survive the night. You should prepare your goodbyes.”
I’ll never forget the look of anguish in the young doctor’s eyes as he delivered the news. His words opened a wound in my heart that still bleeds when I think back to that evening in April of 2006—the night my son Adam fell into a coma. We had just traveled by ambulance from our small rural hospital to a larger, better equipped medical facility in Portland, Maine, nearly two hours away. It was a risky transfer, but we were assured it was my son’s best shot. I couldn’t give up now.
So, rather than goodbyes, I made the conscious decision to rally for my child. And I knew Adam would do the same. He was a fighter—a kid that overcame obstacles and defied anything that tried to hold him back. Together, we hunkered down in the ICU.
There are moments when I can still smell the heat from the machines humming around us. To distract myself from the overwhelming complexity of the tubes, wires and rainbow of flashing lights, I timed my own breathing with the rise and fall of his ventilator. And I watched. I watched every swell of his chest, each tiny twitch of his hands. I monitored the lineup of screens with numbers increasing and decreasing, learning from the nurses what was good and what needed to be addressed. When there was a change, any change, it didn’t matter how big or small, I reported my findings to the medical staff. The only time I left his side was at night—not by choice, by hospital policy. A friend allowed me to stay at her empty condo only a few miles away. It saved hours of traveling and being gone from my son for too long. Not many families in our situation are this fortunate.
Adam remained in a coma for five days, before being diagnosed with an unidentified viral infection that led to the onset of Guillain-Barre Syndrome, a rare disorder in which the body’s immune system attacks the peripheral nervous system. He spent a month in the hospital recovering from the aftermath of this debilitating disease. As a family, we had to manage life with half of us being away from home. We had no other option.
Since our experience more than ten years ago, the potential of telemedicine has emerged—allowing for the remote diagnosis and treatment of patients. I’ve often wondered if this technology had been available when Adam was sick, would he have received a quicker diagnosis? Would we have been able to stay closer to home? According to a new study, the answer to both is “yes.” This groundbreaking research conducted at the Mayo Clinic Hospital in Arizona is the first to question if medical providers need to be in the same room as a patient, or if robotic telemedicine can be used to successfully complete an assessment of someone in a comatose state.
Led by Bart Demaerschalk, a professor of neurology at the Mayo Clinic College of Medicine and director of synchronous telemedicine at the Mayo Clinic Center for Connected Care in Rochester, Minnesota, the 15-month study included 100 patients of varying levels of coma. The patients underwent assessments utilizing two closely related scales: the Glasgow Coma Scale (GCS) and the Full Outline of UnResponsiveness (FOUR) score. The GCS measures eye opening, verbal response and motor response, with scores ranging between 3 (severe) and 15 (mild). The FOUR score is a 17-point scale (with potential scores ranging from 0 to 16) that assesses eye response, motor response, brainstem reflexes and respiration.
A pair of neurologists was assigned to each patient. One was assigned to the bedside of a patient in the ICU and the other was assigned to an office in the neurology center where they had access to a computer workstation. They conducted their neurological assessments simultaneously, one doing a normal bedside assessment and one through robotic telemedicine. Each pair submitted their score independently. The differences between total bedside and remote GCS and FOUR scores were trivial. The mean GCS total score at bedside was 7.5, while the one conducted remotely scored a 7.23; a difference of 0.25. Similarly, the mean FOUR total score at bedside was 9.63 compared to the remote score of 9.21; a difference of only 0.40.
“This study is significant in the sense that it attempts to connect telemedicine to the physical examination, which is a historical weak point,” says Daniel Holena, assistant professor of surgery and co-director of the rapid response team in the division of traumatology, surgical critical care, and emergency surgery at the Hospital of the University of Pennsylvania. “It does a good job showing this is a possibility.”
Robotic telepresence, like that used in the study, is the most sophisticated type of telemedicine technology deployed today. In addition to an audio-video connection, these tall, vertical units, which resemble antique street lights in their contoured shape, are remotely controlled using a desktop, laptop or mobile device. They can be pre-programmed to drive on their own or the drive mode can be overridden and controlled by an individual, located in the same building or hundreds or thousands of miles away, with a joystick or keyboard. Medical professionals on site can plug peripherals into the units to directly extend the remote doctor’s capabilities beyond just audio-visual. For example, a nurse could plug a stethoscope into the robot and then place one end the stethoscope on a patient’s chest, so that the neurologist at the workstation could hear the breath or heart sounds directly as if they were at the bedside.
The current study is an extension of previous telestroke research conducted at the Mayo Clinic, done in light of a major urban-rural disparity for expertise in the clinical neurological sciences, both in the number of neurologists and neurosurgeons. “In Arizona, we discovered that the neurological and stroke centers were, by and large, located in metropolitan Phoenix and Tucson, and most of the remainder of the state had no access whatsoever to neurological expertise,” says Demaerschalk. “Patients were being transferred from small, rural community hospitals to larger centers when there were neurological emergencies, like strokes, often arriving too late for there to be any treatment delivered.”
Many of the treatments for patients in comas can be started at a remote hospital if the emergency department physician works in concert with a neurologist or neurosurgeon via telemedicine. This provides an earlier diagnosis and treatment plan, and can even make a transfer completely unnecessary.
Although the equipment can be expensive, upwards of $25,000 a unit, telemedicine is a cost-effective mode of care when compared to traditional methodologies, and the outcomes are often improved. Mayo now has a mature, multistate telemedicine network, which includes nearly 50 hospitals across nine states. These participating facilities are equipped with robots that Mayo owns and deploys, allowing them access to teleproviders in Arizona, Florida and Minnesota.
Approximately 5,000 patients with neurological emergencies are treated annually who would have otherwise been transported hundreds of miles away to neurological centers. With telemedicine, this network has achieved a 68 percent reduction in unnecessary transfers.
Demaerschalk and his team are now turning their attention to a subset of patients in coma: those who might meet the criteria of brain death. “It’s a very important state and there are very strict criteria to make that diagnosis. We believe that the assessment could successfully be done via telemedicine,” he says.
He also believes a nationwide rollout of telemedicine programs could vastly improve our health care system. There are several bills introduced in legislature that could help streamline this process and reduce the barriers for physicians to practice telemedicine in underserved regions in multiple states.
For patients, telemedicine means the best possible care, as early as possible, no matter where they are located. For families, like mine, it means hope—even when the odds must be defied.