Often patients and families think their doctor is all-knowing when it comes to the causes of their illness and the plan for treatment. Yet, uncertainty underlies each diagnosis and treatment plan.
This could not have been more true in Jay Killen’s case. I know this first-hand because I am one of the doctors caring for him.
On the Tuesday morning before Christmas, Jay Killen lay paralyzed in an ICU bed. His wife, Amanda, clutched his hand, his nurses monitored his IV drips, his respiratory therapist tended to the ventilator and his doctors were baffled as to what was making him ill.
“It doesn’t look good,” Dr. Rahul Sonone, the neurologist, told Amanda Killen. “He is not responding, his pupils are fixed and dilated.”
Her husband, a 43-year-old heavy equipment operator, was unable to blink or to wiggle his thumb. He was paralyzed.
At first, Sonone thought Killen had a stroke, but a CT scan of the head was normal. Could he be in a coma? Sonone couldn’t make sense of it. A team of doctors was on the case, groping for the diagnosis.
The next morning Amanda Killen, who slept in the ICU room, pointed out an oddity. “He can twitch his leg,” she said. Indeed, Killen twitched his leg on command. This small clue gathered by the family’s being at the bedside changed everything. Killen was not in a coma or brain-dead; he was very much alive and trying to communicate. He was locked inside his own body. But why?
The fear of missing a diagnosis that could result in irreversible harm has often kept me awake at night.
Diagnostic errors are common in medicine. According to a 2005 study in the Archives of Internal Medicine, the rate of diagnostic errors in autopsy studies was about 15 percent. Some common causes included lack of teamwork and communication, as well as failure to continue considering reasonable alternatives after an initial diagnosis is reached.
That morning, Sonone called Dr. Ghalib Mannan, my partner and an infectious disease specialist. They then spoke with Dr. Istvan Wollak, a pulmonologist, and Dr. Muhammad Mirza, a hospitalist. “The doctors were forming huddles outside the ICU room,” Amanda Killen recalled.
Sonone suggested the diagnosis was a variant of Guillain-Barré Syndrome, a neurological paralysis that begins at the feet and moves upward, caused by the body’s immune cells attacking its peripheral nerves.
Mirza thought a cervical injury was pinching the spinal cord, leading to the paralysis. Wollak thought it was encephalopathy from the respiratory failure and from being in the ICU. Mannan thought it was rabies: Killen had been scratched by a cat a few weeks earlier.
But each suggested diagnosis did not explain all the findings: The paralysis moved downward, the spine CT was normal, the encephalopathy should not allow for voluntary movements, and the cats had been vaccinated for rabies.
Then suddenly, as Mannan began to list infectious agents that could cause paralysis, “a light bulb went on in my head,” Sonone recalled. “Could it be botulism? It fit so perfectly.”
Botulism is a rare disease. No one except Sonone had seen a case of it. “I had seen a similar case five years ago during training,” he recalled. “But that was easy to diagnose because three members of the same family had it after eating from the same can of food.”
Botulism is caused by a bacterium that releases a potent toxin that binds to nerve receptors, making them ineffective. The bacterium enters the body through foods, mostly home-canned vegetables, cured pork and ham, smoke or raw fish, and honey or corn syrup. That is why doctors recommend that infants less than 1 year old not be fed honey or corn syrup. Amanda acknowledged that her husband had eaten from a jar of beets and home-preserved vegetables.
By the afternoon, with a likely diagnosis, the mood among the physicians turned from confusion and uncertainty to full-throttle determination. They contacted the hospital infection control nurse, who contacted the health department, which contacted the Centers for Disease Control. Within hours a physician investigative officer from Atlanta was on the case. The CDC dispatched an antibotulism toxin, which arrived by FedEx in Memphis at 2 a.m. and was in Killen’s vein within hours.
Christmas, New Year’s, Valentine’s Day and Memorial Day have passed, and Killen is still in the hospital, making a slow recovery. In these months he has battled pneumonia, urine infections, line infections and blood clots.
When I examined him a few days ago, he was still on the ventilator, able to smile, mouth words, stick out his tongue and wiggle his thumb. He has a long road ahead, but he has family and friends by his side.
As Amanda Killen and I sat by her husband’s bedside, I told her that often medicine is a mystery. Just as surgeons are analogous to plumbers unclogging and rerouting arteries and intestines, internists are like detectives searching for diagnostic clues. As an infectious disease doctor, I feel like a hunter, seeking to destroy the viruses, bacteria, fungi and parasites that attack my patients’ bodies.
Killen’s remarkable story is not just about the success of the doctors working together to come up with the right diagnosis, but the partnership of doctors, patients and families.
I have learned the best doctors are those who are open-minded, those who listen to colleagues, the patient and family, because medicine is not just one size fits all. Medicine is a mystery that has to be unraveled, a treatment plan that has to be tailored, and an art that has to be individualized. When all these are in sync, we can work miracles.
Source: Commercial Appeal