The electronic medical record (EMR) has taken the place of the handwritten physician history and physical and daily soap notes. In this modern era of informatics, physicians add patient details into a proscribed template that bears a remote resemblance to the traditional note-writing format taught in medical schools. The original H&P was a long hand-written narrative that included the patient’s chief complaint, presenting symptoms, environmental exposures, past medical history, and family history. A well-written note would take up several pages in the medical chart and served as the patient’s story.
Today, the EMR has replaced that thoughtful activity with a series of short cuts and phrases that can be quickly populated into a note, which is ultimately used to justify hospital and physician billing. Certain phrases must be present to attain the desired level of billing. As a critical care physician, I can easily meet the highest mark with the phrase, “respiratory failure.”
To facilitate efficiency, the EMR allows practitioners to create “dot phrases.” These are shortcuts that require a minimum of keystrokes for common phrases. One of my dot phrases is “CV exam.” For a normal cardiac exam, I type only “.CV” my note will then populate with a full description of a normal cardiac exam. Another phrase I have developed is for the neurologically devastated child. The phrase, “.nd” includes the words microcephaly (small head), contractures in all four extremities, severe scoliosis, posturing to pain, and non-responsive to examiner. These physical exam findings are all true. But somehow putting them into a dot phrase makes them seem less real and tragic. It is merely a way to communicate to a faceless biller in an office somewhere how much can be charged to an insurance company for this constellation of findings.
The last time I used that certain dot phrase, I was describing a 21-year-old boy whose mother was told would never live beyond his second birthday. When I first met her, she bragged that he had proved all the doctors wrong. He had developed subdural hemorrhages in utero that had led to swelling in his brain. The swelling led to death of brain cells and failure for much of his brain to develop normally. The consequences were severe developmental delay and a life spent either in bed or in a wheelchair. He was able to smile and laugh and he responded to his mother and other family members the way a two or three-month-old baby might. Sadly, he never progressed beyond a social smile and he never walked or talked. Because of the insult delivered to his brain during fetal development, he had a seizure disorder. Due to his inability to be mobile, he developed contractures and scoliosis over the years. By definition, he was neurologically devastated.
I met him at the end of his life. The human body is not meant to be immobile and despite loving care, he had developed terrible scoliosis and contractures that had led to restrictive lung physiology leaving him unable to breathe effectively. This had led to multiple hospitalizations with many weeks on a ventilator. His time was now spent mostly in the hospital unable to smile or laugh with his family. His mother was being counseled to stop aggressive medical care and allow her son to die a natural death. She was not ready to do that and continued to insist on a full code status. Her insistence in the face of futility frustrated the medical team and exhausted otherwise patient caregivers.
Prior to taking over his care my partners told me that his family was difficult and unwilling to accept that he was dying. “The difficult family” is another dot phrase that physicians use all the time, except we don’t put it in the chart. It is shorthand for the family that won’t readily accept medical futility. They want a tracheostomy, another week on the ventilator, a bone marrow transplant, anything that will keep their child alive. Of course, none of these were reasonable options for my patient. A tracheostomy would not fix his restrictive lung disease, more time on the ventilator would only further stress his sick lungs, and a bone marrow transplant can’t fix a brain that was never allowed to develop.
We had multiple meetings with the family directed toward finding a humane, dignified way to treat their child. Each time, his mother would say, “I just need more time, I can’t decide right now.” Her other children didn’t push her but they all said that she should let him die a natural death, without a tracheostomy, and without being on a ventilator.
I resigned myself to accepting that she simply could not let him go and that he would end up with a tracheostomy and spend the rest of his life tethered to a ventilator unable to use his voice to laugh or babble as he had before. So I asked her to tell me more about her son. I wanted to see pictures of him when he was at his best. She immediately brightened and opened up a photo album on her phone. She showed me pictures of him surrounded by his brothers, sisters, cousins, aunts, and uncles. He always had a big smile on his face and someone’s arms were always around him. There was one of him on a horse with the help of his big brother. Another of him in a tuxedo in his wheelchair attending senior prom. His older brother and his date standing by his side, again he had that big smile, and I imagined a gleeful laugh coming from him. Another picture showed his younger brother sitting in his wheelchair with an oxygen mask on because he wanted to be like his big brother. All these pictures erased my dot phrase of neurologically devastated and painted a new image of him and his family in my mind. I now saw the love and courage that went into his daily complex care and I understood his mother’s fierce belief that he would get better if only….
Once, we stopped asking about her “goals of care” (another dot phrase), and focused on him as a person, the mother tearfully said she’d liked to take him off the ventilator and let God take over. After seeing those pictures, I wasn’t surprised by her decision. She had created a life of humanity and dignity for him and of course, she would give that to him in death. By not speaking of him as a dot phrase, we saw his humanity and gave his mother space to honor his life with a dignified death, free of suffering.
He died several days later in his mother’s arms basking in the love of his family. There is no dot phrase for that.