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?
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