This past week my child got sick. It does not matter that he is an adult, on his own, and very capable of caring for himself, he is still my child. On a Saturday night, he called me and my wife to ask our advice. He was having vomiting and severe abdominal pain and my old clinical roots in gastroenterology came to the forefront. “Is the pain radiating? Are you having diarrhea or constipation? What does the vomitus look like?” After a relatively short time it was clear that this needed hands on evaluation quickly as I suspected that he may need urgent intervention. I suggested he go to the emergency room. He lives near an academic medical center and he went there. In the ER, the triage nurse saw him and determined that he needed to be seen quickly and she sent him back into a room to be seen. There he sat for more than an hour, writhing in pain with an occasional visit by a nurse to “check on him”. He and I were communicating via text and by phone and I was trying to stay calm.
I finally called the ER and asked to speak to the charge nurse. I asked her why he had not been seen and she proceeded to tell me about all the other, more important issues they were dealing with. I replied that I understood however with a possible acute abdomen, the protocols are pretty clear: an exam of the abdomen, a CBC to check the white count, an abdominal film and upright to look for free air. Surely a doctor could examine his abdomen and those immediate tests could be done? She replied that the tests could only be ordered after he was seen by a doctor and the doctors were too busy. My next call was to the nursing supervisor on call for the hospital. I explained that I did not understand how someone sick enough to be triaged into a room immediately was not sick enough to have an evaluation begun. She said she would call me back. In half an hour she did telling me that the tests I asked about had been ordered along with a CT of the abdomen with contrast. I spoke to my son who said a doctor had come in to say hello but no one had yet laid a hand on his abdomen, perhaps the most important diagnostic test of all.
After 7 hours in the ER, he was admitted without a diagnosis but with pain severe enough to warrant intravenous morphine. The ER doctor called and spoke to me at about 3 AM and told me that the gastroenterology fellow had been notified and would see my son in the morning.
The next day, my son was no better. It was about 11 AM and he still had not been seen by the gastroenterologist so I called and paged the GI fellow. I did get to speak to him and he told me that the floor staff had told him that the admission had been inappropriate and my son did not need to be in the hospital and that he was not planning to see my son. I asked him why my son was on morphine for pain if he did not need to be in the hospital. Those two facts were inconsistent. He went to see my son. I went to get a flight to be at my son’s side. It was clear at that point that he needed a bodyguard, an advocate, at his bedside.
That evening, when I arrived, my son was in excruciating pain, only relieved by the morphine he was receiving. I immediately sent an email to the Dean of the Medical School, who is an acknowledged expert on quality of care, to question the quality of care that my son was receiving. The house staff had decided that he was an "inappropriate admission", either lying, drug seeking, or just someone who was, in the great tradition of medical house staff everywhere, a “crock”. An hour later the chief of medicine was seeing my son. His history and physical, consistent with a senior physician overseeing residents and interns, was more thorough than any my son had received since admission. Usually it is the other way around. The interns and the residents spend the most time with the patient. Meanwhile I was trying to figure out who the doctor responsible for my son was. Between weekend shifts, night floats and hospitalists there appeared to be no one truly taking responsibility for my son’s care. I learned that the "attending" was a hospitalist who had not examined my son at all. Nurses stopped in occasionally but were mainly present at their monitors at the nursing stations and as disembodied voices when you pressed a button. Suddenly, my son developed massive hives all over his body leading to his eyes being swollen shut. I took pictures with my phone and the night float doctor finally arrived, looking a bit frightened at seeing my son evolve so quickly. He treated him appropriately and the rest of the night was calm.
The next morning I waited for the rounds. I thought I would see real deep discussion and thought about my son’s troubling acute illness. Usually rounds are first thing in the morning and involve a senior doctor, the attending teaching the residents, interns and students all about the diagnosis and treatment of patients. It traditionally is done first thing in the morning so the plans for the day can proceed seamlessly. I waited and waited and, while a nice young resident came in and introduced herself about 10 AM, she did not examine my son. I asked her about the episode the previous evening and she minimized it, until I showed her the pictures which seemed to surprise and perhaps even shock her. She said that his liver function tests had been elevating and that he was going to have an endoscopy that morning. My son’s pain had decreased a bit and had localized to over his liver but his nausea, profound weakness and his joint pain were still troubling. He no longer required the morphine but was still in a great deal of pain. I walked out to the nursing station and discovered where rounds were really taking place. Doctors of all stripes were standing around the computer terminals. Apparently the computer was the important patient being treated here, not the patient! The laying of hands on the patient, the communication art of medicine, was just not deemed important. It hearkened back to an old joke when I was a fellow in the Harvard teaching system that our goal was not cure, but dying a Harvard Death – a death with perfect lab values. Now it seemed that the new goal was not just perfect lab values but a perfect Electronic Medical Record.
By now it was noon, the morning endoscopy had not yet happened, my son was being kept NPO (nothing by mouth) and he had not been seen by the attending physician in gastroenterology or the attending physician who was responsible for his care. I asked again if the nurse could please call down to the endoscopy unit and ask how many cases were ahead of my son. The nurse called and was told that they were on their way to pick him up. One hour later they had not yet arrived and I asked again. They told me that patient transport had to prioritize and my son was not a priority.
They finally took him to endoscopy and the staff prepared him. Another hour passed sitting in the endoscopy unit, not yet in the exam room. Again I asked about the delay and they said that he was next. He still had not seen the gastroenterologist. They eventually took him back to the endoscopy room. I went with him. The nurse politely asked me to leave and I politely said that I would not leave. She brought in the head nurse of the unit who told me that I had to leave. I explained that I was a gastroenterologist and that my son had not even seen the attending who would be doing the procedure so I would not leave. She told me that that was against policy. I asked her to show me the policy in writing and explain the reasoning behind it. She left. Shortly thereafter, the chief of medicine, a nice man and obviously a caring physician who was obviously charged with “handling” me came running in (he was already late for something he had to attend) and told me that he had prevented the hospital lawyer from coming in and that he would need to cancel the procedure and that I had caused havoc in the entire medical center. I calmly said that I was aware that I had asked uncomfortable questions however from a quality of care point of view, I had concerns and also did not know if the endoscopy was indicated or not since he had not been seen by the gastroenterologist. I told him that I believed the failure to evaluate my son before the procedure to be a breach of quality of care. He told me to wait a minute and then came running back in with the gastroenterology attending who apologized for not seeing my son and explained that my son’s liver tests had been going up steadily and that it looked most consistent with an acute hepatitis of some sort but that an endoscopy should be done to rule out an ulcer as a cause. After a brief discussion and my satisfaction that he would not harm my son during the procedure, I left.
After the endoscopy, which did not find any pathology to explain the pain, the gastroenterologist came out and said that he thought that this was an acute Hepatitis A probably from infected shellfish. He said that he would discharge my son from the hospital and see him in two days to draw more bloods and to go over the results of the blood tests drawn in the hospital. That was at 3 PM. After another long wait for transport, he went back to the room. By 4 PM, he still had his IV in and had not yet received discharge instructions, the appointment for two days later and his prescriptions. The attending doctor of record, who was a hospitalist, came in to tell my son about the discharge. She had never examined him during his hospital stay but was the doctor of record “caring” for him. She left and after another fifteen minutes, I went out to see the nurse, sitting at the computer terminal, who told me that he was working on the discharge. By 5, I left to catch my plane, after helping my son get dressed with the IV still in. Shortly after I left, he finally was discharged. He went to his home, still feeling quite sick, but no longer having the severe pain that had led him to the hospital.
Two days later, he went back to see the gastroenterologist, who is also a liver specialist, and was told that all his tests had been negative including the test for Hepatitis A but his liver was still showing signs of inflammation with the liver tests being even more elevated. That, of course, was after waiting an hour past the appointment time to be seen. The doctor told my son to come back in a couple of weeks for more blood tests and to see him in a month and that he may need a liver biopsy.
My son still has persistent pain and nausea and it is hard to predict his course without a diagnosis for the injury to his liver. At the appointment with the gastroenterologist, my son asked for copies of his records so he could discuss, at length, the test results with me and my wife. The office staff said that they were too busy to make copies.
That afternoon, I was left to again email the chief of medicine to ask him to put me in touch with the gastroenterologist to obtain the lab tests. He said that he would forward my email and that the doctor would get back in touch with me quickly. It has been two days, and it is now the weekend and I have yet to hear from that doctor or see a single lab test result.
So now my son is faced with inflammation to his liver of unknown cause and of unknown future course. At the same time, he also processes the lessons he has learned from his interface with the best minds at this academic medical center. What are those lessons?
- His pain is unimportant. His pain was discounted again and again by the doctors and nurses
- His time is unimportant. He was made to wait over and over again, even when he went back as an outpatient, because he was never the high priority and the doctors’ time was deemed more important than his.
- He is assumed to be lying if the “tests” don’t show something definitive. Until his liver tests went up and the massive hives broke out, he was assumed to be lying, faking, drug seeking or just plain malingering.
- Talking to him, examining him, understanding him as a person and understanding his knowledge and his values is just not important. Looking at the lab values and reports in the computer and filling in the boxes on the computer screen are important.
- Feeding him is not important but feeding the computer is crucial.
- His medical records are not his own. Giving him his records may be a legal requirement but they don’t have to make it easy or quick.
Are these the lessons we want patients to learn? Is this what we are teaching our young physicians?