Forty-eight hours after returning home, I found myself in our local fire department’s rescue squad vehicle as it sped to the nearest hospital. It had been an especially tough night for my second son. As he helped me get to the bathroom during the early morning hours, I’d lost consciousness. He thought that I’d died in his arms. It was no picnic for my wife, either.

The local hospital did a great job keeping me alive. My hemoglobin had dropped to dangerously low levels — 4-point something. Three units of blood later, the ER physicians had stabilized me and I went to the ICU.

Given my new diagnosis, the next logical step was a transport to the major medical center that had treated me previously and where specialists were already lined up to perform important diagnostic tests the following day. I had confirmed that those specialists were among the world’s leading experts in my condition. I was ready for them to start working on me.

At the end of the day, the transport service took me to the medical center where the intensive care unit had a bed waiting for me. As I began my third hospital admission in two weeks, my ICU experience was better than what I’d survived on the general medicine floor. Still, two things struck me.

First, the ICU resident assured me “with 100% certainty” that my bleeding was not the result of varicies — stressed blood vessels subject to intermittent bursts that produced rapid blood loss. Top specialists would eventually prove him wrong. Beware of youthful certainty — or misplaced certainty at any age.

Second, the resident told me that he would talk to the GI people. He thought they would probably want me to have another colonoscopy.

You have got to be kidding.

Needless to say, the colonoscopy didn’t happen. Instead, an outstanding specialist performed a diagnostic test called an EUS the following day. More significantly, he took personal charge of my situation in a way that no prior physician had. At last, I had reached the promised land of America’s vaunted medical system.

Something else became clear to me. The goal of ICU doctors is to get a patient sufficiently stable to move him or her out of intensive care. That makes sense, but in my case, the specialist who had performed the EUS stressed to my family and me that the goal was to try to “catch” the internal bleed as it was happening. Only in the ICU could that degree of attention to a patient occur.

“Over the weekend, don’t let anyone move him out the ICU,” he said.

We fulfilled his directive, but it took a herculean effort fighting the ICU hospitalist team that wanted something much different. At one point, I asked the ICU attending physician to please call the EUS specialist directly. I think she did, because the attitude of the entire ICU team changed dramatically thereafter.

In discussing my eventual move from the ICU, the attending physician suggested that I go to a floor where a resident would be available to monitor me more closely.

“It’s a resident hospitalist floor,” she said. “That seems like the best place for you.”

It sounded good, until I got there and realized I was returning to the same floor that I’d occupied for my first two admissions. Greeting me was the third-year medical student who was becoming the Forrest Gump of my medical journey.

Several days later, the final biopsy results came back. It was a mixed bag. The good news: I had relatively uncommon neuroendocrine pancreatic cancer. It is slow-moving and not aggressive. Life expectancy for victims gets measured in years, rather than months. Treatment involves monthly injections, rather than debilitating chemotherapy. The bad news: The tumor had so intertwined itself into my major vascular systems that it was inoperable and probably the culprit responsible for my internal bleeding.

Perhaps the best news of all was that the diagnosis meant I would move to a designated cancer floor where the physicians making the rounds were oncology specialists. From then on, I would remain in the care of doctors who would look at me holistically — as a unitary cancer patient with complications. Maybe they were called hospitalists, too, but this would be a decidedly different experience from what had been happening to me on the general medicine floor. My new group spoke frequently with the specialists who were the reason I’d chosen the hospital in the first place. The specialists themselves made visits to my room.

I was finally in the presence of doctors who were accustomed to treating entire patients, rather than discrete conditions.

In my last post, I described my battle against the hospitalist team and the GI Fellow who had decided early on and without hesitation that I needed another colonoscopy — my second one in a week. Once I found and presented the attending GI physician with sufficient evidence to demonstrate that my symptoms were more consistent with an upper GI bleed than a lower one, he responded quickly and unambiguously.

“This is your second hospital stay in a week,” he said. “We have to get this moving and get you out of here.” It was Sunday afternoon.

“I’m ordering another endoscopy, just to make sure the first one didn’t miss anything,” he continued. “We’ll also do a capsule endoscopy. They’ll insert a camera-pill at the same time we perform the endoscopy. I’ll schedule both procedures for early Monday morning and have them place the capsule so that at 5:30 pm someone can pick up the image pack. We should begin to get some results on Tuesday.”

“Will you be performing those procedures?” I asked hopefully.

“No,” he said. “Another attending is on call here after today.”

“So I lose you at…?” I asked.

“Midnight,” he said. “But I’ll still be in the hospital tomorrow. After all, I do have patients here to see.”

What was that supposed to mean? I assume he was referring to people whom he’d seen as outpatients and then admitted to the hospital for specific procedures. But wasn’t I his patient, too?

His remark suggested something about his personal investment — or lack thereof — in those who, at least in my case, enter the hospital by way of the emergency room. Never mind that most of us are in worse shape than those a physician may regard as his “real patients.”

“You’ll be in very capable hands,” he assured me. “You’ll have the doctor who trained me.”

That was good enough for me.

***

The second endoscopy would become the most important step in reaching a diagnosis. I’ll come back to that in my next post. But the story of what happened to the imaging pack for the related camera endoscopy is an example of how a physician’s directives can go unheeded by those whose only job should be to follow them.

As required, I wore the imaging pack for the entire day. At 6:00 pm, I rang for the nurse.

“Can I help you?” came the response over the speaker.

“Yes,” I said. “The attending GI wanted the pack for my capsule endoscopy picked up at 5:30 pm. Can you make sure it gets picked up before everyone in the GI lab goes home?”

“I’ll check on it,” she replied.

At 6:30, I rang for the nurse again.

“Can I help you?” she asked.

“Yes, can someone tell me why the camera endoscopy pack still hasn’t been picked up?”

“I’ll let your nurse know,” said the anonymous voice.

At 7:00 pm, a hospital transport worker arrived to take me via gurney for a CT scan. The attending GI physician who’d performed my second endoscopy that morning had ordered it after seeing an anomaly. His willingness to entertain the possibility that my case was atypical saved my life.

As I lay on the transport gurney, I asked the nurse what was happening with the camera pack.

“I paged the resident, who said he’d paged the GI resident on call, who said it was no big deal. They would probably pick up the pack tomorrow,” she said.

I was furious.

“Well, despite the views of the various on-call hospitalist and GI residents, the attending GI who ordered the camera endoscopy thought it was a very big deal. Here’s what I want you to do while I’m gone for my CT. Call the attending GI physician who ordered a prompt retrieval of the camera pack so processing of the images could begin. Tell him the pack is still sitting on my shelf and ask him how we get it where it’s supposed to be. Because I’ll tell you where it’s not supposed to be: in my room.”

“I’m not allowed to do that,” the nurse responded. “I have to call the resident on call and then he has to call the GI resident on call.”

As my wife and I headed for my CT scan, I was fuming.

“The CT will be on the same floor as the GI lab,” I suggested. “Maybe we can find someone down there who will pick up the damn pack. I’ll take it to them myself on a gurney, if I have to.”

Once on the CT floor, my wife made a beeline for the GI lab.

“Follow her,” I told the transport guy pushing my gurney down the hall as fast as he could. This is what black humor feels like when you actually experience it, I thought.

We sped behind her as she entered the GI lab and searched for someone who could help.

As I rolled into the empty GI lab on my gurney, a short, stocky, middle-aged woman stood with a mop next to her steel cleaning bucket.

“She can run around here all she wants,” the woman said as she shook her head in disbelief while my wife raced through the entire GI lab. “But ain’t nobody here. They all gone home.”

Indeed, they had.

After the scan, I returned to my room where the dreaded camera pack remained on my shelf. Meanwhile, the nurse to whom I’d barked out orders relating to the problem had benefited from a shift change — she was gone and her replacement was clueless about just about everything, so I gave up for the evening.

***

When I awoke at 7:00 am Tuesday morning, the pack was still there. In walked the only person who had provided anything remotely resembling continuity of care during my first two admissions: a third-year medical student.

“How was your evening?” he smiled.

“You see that camera pack?” I answered coldly. “The attending GI who ordered the camera endoscopy wanted it picked up at 5:30 pm yesterday. Your job is to find out why it’s still there.”

An hour later, he came back. “It looks like you might be going home today,” he said happily.

I pointed to the pack on the shelf.

“I’m sure they’ll pick up the pack soon,” he said.

“What does ‘soon’ mean?” I was fed up.

“I don’t know,” he said meekly. “The GI lab is very busy.”

“And I’m very much bleeding,” I replied.

An hour after that, I wandered into the hall and found the medical student.

“What’s the story on the pack?” I asked.

“I’m waiting to hear back from the GI Fellow,” he said. At that point, the phone rang. “That’s her calling now.”

He was right. I heard only his end of the call, which went like this:

“I’m very sorry to bother you…I know you’re very busy…We have an imaging pack from a camera endoscopy that hasn’t been picked up…Oh, yes…Sorry…Yes…Sorry to bother you….Thanks.”

I was watching the impact of the medical pecking order in action: Attending physicians were at the top, then came their Fellows, followed by residents and finally, interns. Medical students occupied a status somewhere below nurses. He hung up the phone. It was 10:00 am.

“She said they’d pick it up as soon as they could,” he explained. “But they have to be the ones who pick it up. No one else can deliver it to them. And then they’ll send it to wherever it gets processed.”

I glared at him.

“You know, they do these imaging studies on an outpatient basis,” I said slowly and calmly. “So how about if I just have my wife take it down there and tell them that this pack is from an inpatient.”

He seemed puzzled: “I don’t think you can do that. When you’re inpatient, they have to pick it up.”

“Just to warn you,” I said sternly, “I’m going to come out here every 30 minutes and harass you until someone picks up that pack and takes it where it’s supposed to go. I have family members here who will deliver it personally, but you’re telling me that’s not an option. Whatever else is happening here, you and the GI lab have violated the the directive that the attending GI issued when he ordered the camera endoscopy on Sunday. We’ve already lost an entire night because of someone’s ineptitude and bureaucratic absurdity. So every 30 minutes you’ll hear from me — until it’s no longer in my room.”

At 10:30 am, someone from the imaging processing department — not the GI lab — walked into my room and picked up the pack.

“Where are you taking the pack for processing?” I wondered. “The GI Lab?”

“Oh, no,” he said. “We do the processing in a special department across the street.”

Perfect. The GI Lab that apparently insisted on being in the middle of a retrieval process — and messing it up — had nothing to do with processing the pack to get the results.

***

The 17 hours from 5:30 pm Monday night to 10:30 am Tuesday morning may not sound like a long time, but when you have uncontrolled internal bleeding from unknown origins, every minute of delay translates into something real, namely, blood leaving my body. I wonder how some of the players in this vignette would have felt and acted if it was leaving theirs.

In the end, it boils down to three simple issues. One is the set of bureaucratic obstacles that interfere with the effective delivery of health care. Someone — anyone — could have delivered my pack in a timely manner. But for no good reason relating to patient needs, the bureaucratic structure did not allow it.

Second, a patient benefits greatly when a conscientious health care worker is willing to challenge such bureaucratic obstacles. My nurse who went off duty at 7:00 pm on Monday wasn’t one of those people — and it’s not fair to expect any of them to play the role of aggressor-advocate on behalf of a patient. But I had other nurses throughout my subsequent stay who had no reservations about rocking the boat. They didn’t care whose ire they incurred and their efforts made a positive difference in my experience.

The third point may be most important. There should be sufficient continuity of care so that a single attending physician becomes vested in a patient and remains an active participant in the diagnostic and treatment process. In theory, hospitalists are supposed to perform the “PCP-in-the-hospital” function. In my case, the reality is that they failed miserably in my first two admissions.

The attending GI who ordered the camera endoscopy understood the gravity of my condition, as well as the need for speedy action to deal with it. But he went off duty at midnight and I never saw him again.

Two days into my second hospital admission in a week, the GI doctors were still pointing me in the direction of a second colonoscopy. At least, that’s what the internal medicine team — hospitalists, they’re often called — was telling me.

“Let me talk to the GI attending,” I told the gang of six as they made their morning rounds. The group included an intern, a resident, a hospitalist Fellow, the attending hospitalist, and two medical students.

Penetrating the hospitalist wall to communicate directly with the specialists who are actually making the key diagnostic and treatment decisions would become a daunting challenge. This was especially true on the “general medicine” floor where I spent my first two hospital stays.

“We’ll try to reach him,” said the team resident. “But don’t worry. We’re in consultation with his Fellow regularly about what should happen.”

“That’s not particularly reassuring,” I said. “I don’t know what’s being lost in translation between you and the GI Fellow and her attending physician.”

In the ER, the GI Fellow’s tunnel vision caused her conclude without any corroborating evidence that my problems required another colonoscopy. I’d encountered such personalities before: she was accustomed success, but rarely faced the kind of tough questioning that I’d posed. (My 30 years as a Kirkland & Ellis litigator had made me a pretty effective interrogator.) In fact, when she couldn’t answer in a consistent way that made sense, she was threatened and became defensive. She wasn’t going to change course. Oh, for the comfortable — and sorely misplaced — certainty of youth.

At that point, I took a page from a former client’s playbook. He was the best negotiator I’d ever met. When he didn’t like the way things were going, he walked away from the table.

“I don’t like this plan,” I said. “The last time I had a colonoscopy here, the preparation process to clear me out caused my hemoglobin to crash and required a blood transfusion. I’m not going to do that again. I’ll sign whatever releases you want me to sign. But I’m not doing it.”

I showed the young resident a printout of my blood levels during my previous admission.

“That drop in hemoglobin was probably a coincidence,” she ventured.

Her reaction was a vivid example of confirmation bias. Facts didn’t matter to her conclusion. “Coincidence” explained away anything at odds with what she wanted to see.

“Are you kidding?” I was incredulous and becoming angry. “When you have to rely on the concept of coincidence to explain away correlations that seem pretty obvious to anyone else, you need rethink what you’re doing.”

I wasn’t finished.

“Let me put it to you this way,” I said pointedly as I framed my closing argument. “Are you willing to bet two units of your own blood that my crash during the last colonoscopy prep was a coincidence? Because I’m not.”

“So here’s what I want you to do,” I continued. “Take a look at the stool sample I left in the bathroom this morning. It’s called a melena — a classic symptom of what usually is an upper GI bleed, not a lower one that a colonoscopy will find. I understand how the hospitalist system is structured. You have your turf to protect. Like most doctors, you think in protocols based on typical cases. I need you to think outside the boxes you’ve created for yourselves. You need to talk to the attending GI — not his Fellow or whoever your contact person is for the GI team on this particular shift. Tell him that I want to talk to him personally so he can come up with a new plan because I’m not having another colonoscopy. We ran the preparation process experiment on me once. I’m not repeating it. Period. Not negotiable.”

A few hours later, I’d heard nothing in response to my demands. I ventured into the hall and, fortuitously, encountered the attending GI physician and his Fellow — the same one who had decided on another colonoscopy when she saw me in the ER.

“I assume you’re on the way to see me soon?” I asked the GI attending.

“No,” he seemed puzzled.

“No one has talked to you about my problems with the current colonoscopy plan?” I wondered.

“No,” he said. “Why?

“Can you walk with me for a minute? I want to show you something.”

We returned to my room where I showed him the stool sample.

“Melena,” he said.

“Right,” I said.

“So tell me how another colonoscopy will identify the source of that bleed?” I asked.

“I can’t,” he replied. “It’s an indicator of a probable upper GI bleed. It’s could also be the result of a lower GI bleed, but that’s less likely.”

I then showed him the time series printout of my blood draws — including the critical crash period during the colonoscopy prep that the hospitalist resident had dismissed as coincidence.

At that point, his Fellow walked in. I invited her to take a look at the stool sample I’d left in the bathroom. She refused. I invited her to look at the printout of blood results during my previous colonoscopy prep. She didn’t want to see that, either.

“I need to rethink this whole thing,” the attending GI physician continued. “This looks more like an upper GI bleeding problem.”

“Precisely,” I said. “Thank you.”

At last, I’d found a doctor willing to reconsider his own assumptions about what was happening to me. It took physical evidence — a bowel movement that I’d saved for hours and my printout of blood results associated with my prior admission — to persuade him. Without that hard evidence to show him, I think that my words would have continued to fall on deaf ears.

About 30 minutes later, the GI attending returned to my room — without his Fellow. He said that he’d canceled the colonoscopy, ordered another endoscopy because the first one might have missed something important (he said there were statistics on that), and wanted to see the results of a capsule endoscopy — a pill that transmitted images to a battery pack that I would wear for eight hours.

“We have to get this going,” he said. “I’ll schedule the endoscopy for the morning and have them place the capsule so that at 5:30 pm, someone can pick up the image pack. We should get those results by Tuesday.”

(Despite his desire for a prompt retrieval of the capsule endoscopy imaging pack, it didn’t get picked up as quickly as he wanted. We’ll come back to that not-so-funny comedy of errors in an upcoming post.)

“Thanks for being willing to reconsider your own conclusions,” I said. “Only a confident professional is willing to do that.”

“Not at all,” he said. “Not at all. It’s good that you acted as you did. And it’s good that you are so informed about your situation. It seems that you have become an expert in this area yourself.”

Whenever we get a new case, that’s what litigators do, I thought.

***

Hospitalists purport to function as a liaison between the patient and the specialists who are really calling the shots. In fact, if you ask the hospitalists whether some procedure will happen — in my case, a second colonoscopy — they’ll tell you that they defer to the specialists.

“Who, exactly, ordered another colonoscopy?” I asked.

“The GI team,” came the response.

“Give me a name,” I persisted.

“It’s a team that includes the GI Fellow who saw you in the ER,” the resident hospitalist replied. “The attending GI rotates. But they all have access to all of the notes that all of us leave in the computer.”

How reassuring — computer notes that someone may or may not read have become the primary conduits for continuity of care.

***

Years ago, primary care physicians (“PCPs”) actually visited patients in the hospital. It was part of the professional service that they rendered. Two doctors coined the term “hospitalist” in a 1996 issue of the New England Journal of Medicine. In some respects, it’s a good idea that, all too often, has gone terribly bad.

According to one of the co-authors of the 1996 article, the hospitalist movement grew from a desire to move away from a procedure-oriented billing and revenue system to one that emphasized coordination of patient care. He described the key challenge to expanding the hospitalist program: “We recognized from the start that hospital support payments were crucial, and would hinge on hospitals’ perception of a positive return-on-investment.”

Lost in the search for this positive investment return is continuity and advocacy that a PCP is uniquely suited to provide on behalf of his or her patient. By 1996, maybe the PCP had already become a marginal player, but once upon a time, having hospital privileges meant something to a patient and his primary doctor. Among other things, it meant that the patient could expect his PCP to quarterback hospital care.

Today, the hospitalist embodies ways in which the core mission of modern medicine has become muddled, if not lost. All too often, they are an obstacle to direct doctor-patient interaction that is essential to effective care. Experts should be basing their decisions on accurate information that they receive directly from the patient, rather than from the medical system’s version of the “telephone game” whereby a patent’s initial reports to a young medical student or intern eventually make their way to the real doctors who matter.

With his or her PCP absent from the hospital picture, the patient alone must do what is necessary to get direct access periodically to the specialists who are making the most important decisions about diagnosis and treatment. That means piercing the hospitalist wall.

I didn’t go into the hospital expecting to fight with doctors. The system left me with no other option.