This week’s host of medical grand rounds invited individuals to submit blog posts that feature stories about “sudden change.” As I meditated on this theme – I realized that one of my patients played a key role in my sudden career change from academic medicine to joining a healthcare revolution.
As chief resident in PM&R, I spent a few days a month at an inner city clinic in the Bronx, helping to treat children with disabilities. The clinic was dingy, overcrowded, largely windowless, and had waiting lines out the door starting at 8am. Home health attendants generally accompanied the wheelchair-bound children to the clinic as many of them were orphans living in group home environments. The kids had conditions ranging from cerebral palsy, to spinal cord injury from gun shot wounds, to severe spina bifida. They sat together in a tangled waiting room cluttered with wheelchairs, walkers, crutches, and various prosthetics and orthotics. There were no toys or even a TV for their amusement. The air conditioning didn’t work well, and a lone clock ticked its way through the day with a bold black and white face.
The home health aides were eager to be called back to the examination rooms so that they could escape the oppressive conditions of the waiting room. I opened the door to the room and called the name of one young man (we’ll call him Sam) and an aide leapt to her feet, knocking over another patient’s ankle-foot orthosis in the process. She pushed Sam’s electric wheelchair through a series of obstacles to the exit door and back towards the examining room.
Sam was a teenager with cerebral palsy and moderate cognitive deficits. His spine was curved into an S shape from the years of being unable to control his muscles, and he displayed the usual prominent teeth with thick gums of a patient who’d been on long-term anti-seizure medications. He looked up at me with trepidation, perhaps fearing that he’d receive botox injections for his spastic leg muscles during the visit. His wheelchair was battered and worn, with old food crumbs adhering to the nooks and crannies.
“What brings Sam here today?” I asked the home health aide, knowing that Sam was non-verbal. She told me that the joystick of his electric wheelchair had been broken for 10 months (the chair only moved to the left – and would spin in circles if the joystick were engaged), and Sam was unable to get around without someone pushing him. Previous petitions for a joystick part were denied by Medicare because the wheelchair was “too new” to qualify for spare parts according to their rules. They had come back to the clinic once a month for 10 months to ask a physician to fill out more paperwork to demonstrate the medical necessity of the spare part. That paperwork had been mailed each month as per instructions (there was no electronic submission process), but there had been no response to the request. Phone calls resulted in long waits on automated loops, without the ability to speak to a real person. The missing part was valued at ~$40.
I examined Sam and found that he had a large ulcer on his sacrum. The home health aid explained that Sam had been spending most of his awake time in a loaner wheelchair without the customized cushioning that his body needs to keep the pressure off his thin skin. She said that she had tried to put the electric wheelchair cushion on the manual chair, but it kept slipping off and was unsafe. Sam’s skin had been in perfect condition until the joystick malfunction. I asked if he’d been having fevers. The aide responded that he had, but she just figured it was because of the summer heat.
Sam was transferred from the clinic to the hospital for IV antibiotics, wound debridement, and a plastic surgery flap to cover the gaping ulcer hole. His ulcer was infected and had given him blood poisoning (sepsis). While in the hospital he contracted pneumonia since he had difficulty clearing his secretions. He had to go to the ICU for a period of time due to respiratory failure. Sam’s home health aide didn’t visit him in the hospital, and since he was an orphan who was unable to speak, the hospital staff had to rely on his paper medical chart from the group home for his medical history. Unfortunately, his paper record was difficult to read (due to poor handwriting) and the hospital clerk never transferred his allergy profile into the hospital EMR. Sam was violently allergic to a certain antibiotic (which he was given for his pneumonia), and he developed Stevens-Johnson Syndrome and eventually died of a combination of anaphylaxis, sepsis, and respiratory failure.
When I heard about Sam’s tragic fate, it occurred to me that the entire system had let him down. Bureaucratic red tape had prevented him from getting his wheelchair part, poor care at his group home had resulted in a severe ulcer, unreliable transfer of information at the hospital resulted in a life-threatening allergic reaction, and a lack of continuity of care ensured his fate. Sam had no voice and no advocate. He died frightened and alone, a life valued at <$40 in a downward spiral of SNAFUs beginning with denial of a wheelchair part that would give him mobility and freedom in a world where he had little to look forward to.
Sam’s story was the last straw in my long list of frustrations with the healthcare system. I began looking for a way to contribute to some large scale improvements – and felt that IT and enhanced information sharing would be the foundation of any true revolution in healthcare. And so when I learned about Revolution Health’s mission and vision, I eagerly joined the team. This is a 20 year project – creating the online medical home for America, with complete and secure interoperability between hospitals, health plans, healthcare professionals, and patients. But we’re committed to it, we’re building the foundation for it now, and we know that if successful – people like Sam will have a new chance at life. I can only hope that my “sudden change” will have long lasting effects on those who desperately need a change in healthcare.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.