“You just felt this huge mass in your belly now?”
That’s what I asked my father about six months ago. He called that morning to tell me he was feeling something hard in his belly, and it looked “asymmetric.” I drove over to my parents’ house and examined my dad’s abdomen. Sure enough, he had a hard mass that went from around his liver area all the way down close to his right hip.
My heart sank. I feared the worst, that I was feeling some cancer that had massively infiltrated the liver. That would automatically make it stage 4.
Sure, my dad had been preoccupied 24/7 as the primary caretaker of my mother, after she had suddenly suffered a ruptured brain aneurysm a year prior. And like my mom, he’d never been hospitalized for anything either.
But how could he have missed something this big? He’s a doctor. And why didn’t my brother and I see it coming? We’re doctors too.
It turns out the mass wasn’t a standard tumor. It was a rare retroperitoneal leiomyosarcoma. It had been growing from the back of the abdomen out, which may be why my dad hadn’t felt it until it got big. And it was crowding out everything around it — the liver, the right kidney, the stomach, and the small intestine. It was uncanny that he didn’t really have any other symptoms.
The whole mass needed to come out. My brother and I both trained at the Texas Medical Center — the world’s largest. We all felt more comfortable having my dad get the surgery down there. I knew a surgeon with great hands there, from my days in training. So a year and change after our mom had been there for her ruptured brain aneurysm, we were back there again.
The Texas Medical Center is an interesting place. It’s home to the three biggest nonprofit medical systems in Houston…the biggest VA hospital in the U.S.…the public hospital of one of the largest counties in the country…a world-famous cancer center…the most famous rehab center in the country…not one but two medical schools, side-by-side each other…and a top university that does research with these institutions.
The Medical Center represents all the successes of modern medicine. And all its failures.
At surgery a 17-centimeter, two-pound mass was delivered out of my dad, along with a piece of his inferior vena cava that it was attached to. Fortunately, the entire thing was encapsulated and wasn’t invading anything. And our surgeon got it all out intact.
Unfortunately, it had twisted up the right ureter, which got in the way and was transected. It happens. Our surgeon told my brother and me about it immediately.
The repair was supposed to be routine. It was not. The urologist involved in the case botched it, and it leaked.
But this wasn’t revealed until later. For 48 hours after surgery, my dad produced no urine. Not a drop. You have to pee after surgery. It’s trouble if you don’t.
Dad got a large dose of a medicine at one point to make him produce urine. It gave him excruciating pain. As an interventional cardiologist, my dad had himself given this medicine to his patients a thousand times. He told us never did any of his patients have pain like this from it.
He was producing urine all right, because his kidneys were working fine. But that urine wasn’t going into his bladder like it should. It was going into his back.
All of this was uncovered when a radiologist put two tubes straight into the kidneys to drain the urine. That was when our urologist first talked to us, 48 hours in. He hadn’t expressed this was a problem with his intervention, all the way up until the problem was staring at him in the face.
So what should have been a few days in the hospital turned out to be ten days. I had never seen my dad as defeated and down as he was by the end of this ordeal.
He’s bounced back. All the hardware he had in him as a result of the complication is gone. I told him that right ureter leak was the price that had to be paid to be rid of this mass.
So why did this happen? Can we blame it all on the urologist? Easy fix, if that were the case. Just deal with him and go on.
A week after our dad was discharged from the hospital, my brother and I sat down with the CEO of the entire hospital system.
We talked about a lot of things. We certainly talked about our urologist. But we felt this wasn’t just about him. We weren’t there for him to be tarred and feathered. His actions were in the context of a system that was failing.
We talked about how the urologist was doing daily computer rounds, over-relying on test results rather than clinical judgment, which comes from actually connecting with the patient.
We talked about a senior surgical ICU resident being reluctant to let me talk to the urologist in the middle of the night, even when she herself sensed something wasn’t right, because she was too afraid to wake him up.
We talked about my running into a former intern who had been on staff at the hospital for a while, and the hour-long discussion about the disruption the new electronic medical record system had caused, the cutting and pasting by trainees of epic notes that have little useful things to say and few people reading them carefully, the poor communication among caregivers, decisions on who is transferred into and out of critical care units being made by nurse practitioners, administrators not backing up doctors’ concerns, and doctors checking out of this increasing nonsense.
We talked about the very values displayed in the garden of the hospital: integrity, compassion, accountability, respect, and excellence — all below the heading, “I Care.”
Really? With trainees going around like Amazon Alexas, parroting data without independent thinking? With an EMR whose misuse begins to infect values that only human beings can exemplify? And with someone the system reduces to playing a virtual reality doc, rather than meeting his sacred obligation to take care of someone else in a moment of need only he could fulfill?
“I Care” has to be deeper than this.
My brother and I go out of our way not to be backseat drivers. But we told the CEO that at one point, we felt like the attending physicians on the case. Nobody else was taking the wheel. The car was going to crash if we didn’t.
In a previous post I had mentioned attending a lecture by Dr. Eduardo Salas, professor of psychology at Rice University, on the science of teamwork in health care. According to Salas, high-performance teams execute on seven Cs: capability, cooperation, coordination, communication, cognition, coaching, and conditions.
Salas said the last C, conditions, may be the most crucial. It points to the culture that flows through an organization. Is that culture the one that best allows health care teams and the individuals that comprise them to thrive, for effective care of the patients they serve?
Here’s the irony: My brother and I went to that lecture right after we had met with the CEO. It took place in his own hospital. The chief medical officer of the hospital had invited Salas to give it.
All of these Cs were the very concepts that we wanted to bring to that CEO’s attention. The most important being culture. What culture did the CEO of one of the most prestigious hospital systems in town want to cultivate? A culture of integrity, compassion, accountability, respect, and excellence? Or a culture of postmodern, disconnected, medical cyborgs?
I think we got our answer. The CEO told us they would certainly sit down with our urologist. They would also talk to the surgical ICU attending who was responsible for our dad’s care there. But he said most of their physicians loved the new EMR and were taking to it well. Sure, the EMR can be abused, but it would systematize and enhance patient care. And there was no real problem with the systemic culture. Oh and by the way, I should get privileges at their new hospital that had just opened in my area!
He didn’t attend the lecture. And we haven’t heard from him again.
My brother and I are exhausted by all this. And we’re disgusted by our profession right now.
You might say it’s not that bad. We’re exaggerating, because it’s personal. Nobody’s perfect. Or it’s better to be ignorant, because then you have a better experience. We’ve been told more than once, by other physicians, that this happened because our dad is a doctor. That it’s some curse, if you’re family members of health care professionals.
My brother and I have asked these questions of ourselves. We’ve decided these are cop-outs.
Mistakes happen in medicine. We’ve had them happen to our parents, and we’ve done them ourselves. But this isn’t about making mistakes. This is about culture. We shouldn’t accept that ignorance is bliss. No one should be putting up with this on those grounds. I don’t care if you’re a doctor or not. This is about care.
I know there are many good people in the Texas Medical Center who do the most sacred acts there every day.
But the world-famous Texas Medical Center is also a facade. Thousands upon thousands of dollars a day spent by regular folks parking in all the garages there (I must have spent over 200 bucks myself), thinking they’re getting leading medicine. All the while feeding all those construction cranes down there, looming over us like birds of prey. Was the right general surgeon for us there? Yes. But this isn’t leading medicine. It’s misleading medicine.
It happened to physicians who have some idea how our health care system works on the inside. And it happens to millions of other people, every day, who have no idea how much this misleading medicine is cloaked behind platitudes of caring and medical techno-babble.
What are our ethics, as a profession? What do we represent? Who are we?
There is a crisis in American health care, and it’s not a crisis of the exterior. It’s a crisis of the interior. It’s happening all around the country, in the people who are entrusted to care for us in the most significant of ways. The exterior is influencing it. But American health care is rotting, at its core. If we don’t recognize this or make excuses for it, we’re done.
I feel like Russell Crowe in Gladiator. I am a reluctant warrior. I’d rather be tilling the golden fields of my farm with my wife and child than to take on the Vandals. But where necessary, I plan to unleash hell. Enough of this nonsense.
It’s time to destroy…to liberate…and to connect. It’s time for Health 3.0. Who will join us?
Wow, profound coming from highly regarded professionals! It is true, all of it… as a person with a complex chronic illness I see the disconnect every doctors visit, even with the now popular pay out of pocket integrative docs. We need to wake up… I’m on board!
The current impersonal doctor/patient relationship is very palpable. I believe it has turned former caring doctors into data procesors.
It is easy to rely on electronic information to defend oneself against potential lawsuits. In my opinion, that is a factor that needs to be in the mix.
Dr. Julapalli, I’m so sorry your family is going through this and I hope your dad is on the road to recovery.
I can feel your frustration, but am so thankful for you and your brother. Even if you make a small dent in the healthcare system, it’s a start. Keep getting the word out and maybe more healthcare professionals will take up the fight. In the meantime, we need to do all we can to stay healthy. Thanks to you, I’m doing much better.
Only God knows. Dear Doctors Julapalli, thank you for caring. Thank you for sharing. Phyllis McFarlane