COMPUTERIZED INFORMATION OVERLOAD

“I see you have a history of VRE,” said my nurse as I passed the mid-point of my fourth hospital admission.

“What’s that?” I asked.

“It’s a common infection that people sometimes get in the hospital,” she answered.

“Well, this is my fourth admission. I’ve been here for almost 40 of the last 50 days, and no one has ever mentioned that before,” I replied.

“It’s the reason everyone has been coming in here wearing disposable isolation gowns,” she continued.

I had wondered what that was about. From the team of doctors making daily rounds to the people delivering my meals, all donned the disposable gowns before entering my room. No one had ever told me why. I’d thought that it was simply a precaution that applied to everyone on my cancer floor.

“After three clear swabs, you won’t have to worry about it anymore,” she concluded.

“Swabs of what?” I asked.

“Didn’t someone take a rectal swab last Tuesday?” she wondered.

“No. Other than in the ER at the time of my admissions, no one has ever swabbed any part of me,” I said.

“Hmmmmm…..,” she seemed puzzled, as was I.

Information Overload

The digital compilation of patient medical records was supposed to increase efficiency. It reminds me of a time when many in the legal profession hailed the onset of computerization as something that would make discovery — the mutual exchange of documents by adversaries in litigation — easier, cheaper, and less burdensome than dealing with paper. Today, a cottage industry of electronic-discovery vendors is grateful for how that turned out. Clients who continue to pay enormous amounts dealing with written and electronic discovery in big cases have a somewhat different view.

In some ways, computerization helps. Doctors can access patient records remotely. All relevant data appears in one place. Moving records from one care location to another is easier.

Computers also increase the ease with which many different people can enter information into a patient’s file. That becomes a mixed blessing that boils down to three words: too much information. Separating the important from the irrelevant becomes a daunting challenge.

Too Much Information; Too Little Time

Meanwhile, cost-saving systems dictated by hospital CEO’s with MBA’s in pursuit of greater efficiency — which translates into greater demands on individual medical workers — exacerbate the problem. Those workers have less time to wade through all of the potentially relevant information.

The most important advantages of computerized medical records get lost when those responsible for the delivery of patient care don’t read the the information that matters. It’s the peril of providing anyone with too much information — but with no filter allowing them to separate what matters from what doesn’t.

That takes me back to the nurse’s comment about my “history of VRE.”

Good Nurses Make a Big Difference

After our conversation about the VRE infection that I supposedly had, the nurse explained the situation to her successor on the night shift. The next morning, my night nurse came into my room with the answer.

“When you were in the hospital last time, you contracted a blood infection,” she began.

“I know,” I said. “Probably the result of a procedure here. It was one of the worst experiences I’ve ever had. They treated it with a broad spectrum antibiotic.”

“I went back through all of the notes and found the detailed report of that infection,” she said proudly. “It showed that the term VRE referred to the type of blood infection you had, not the kind of VRE that is common in hospitals and detected by rectal swab. You’ve never had the common kind.”

“Good grief,” I replied.

“When someone saw or heard that you had a history of VRE, everyone assumed that you had the more common VRE that requires isolation and disposable gowns for medical people entering your room. But you don’t. In fact, your last blood screen tested negative for that blood infection version of VRE as well. You could still get the more common type of VRE while you’re in the hospital, but you don’t have it now and never have had it.”

“So people have been wearing those disposable gowns for no reason?” I asked. It seemed unlikely that the flimsy gowns accomplished any meaningful protection against transmitting infection anyway. But as one doctor told me, they were “hospital protocol.” I wonder how much this “protocol” costs whoever ultimately pays for it.

“Right,” she said. “The isolation sign on your door can come down.”

“Thank you for your conscientiousness,” I told her.

“No problem,” she said. “I like investigating things and finding answers. “Part of the problem is that when you go through all the computer notes from all the different doctors entering things from everywhere, there’s almost too much information. It’s hard to sort it all out.”

“Well, you did and I’m very grateful to you,” I said. I thought that she would be a good doctor.

There’s a longstanding computer truism: garbage in, garbage out. Here’s a medical system corollary: Too much information going in; too little time for medical personnel to digest it; too bad for the patient.

And remember, I’m at one of the finest medical facilities in the world.

BETTER TO BE THE PATIENT?

My daughter lives in Berkeley and she wasted no time in reacting. Upon learning of my third hospitalization, she boarded a plane and flew to Chicago. Along with my wife, she would remain at my side until we all returned home more than two weeks later.

She and her fiancé are avid runners. So shortly after learning my diagnosis, she found an upcoming charity run/walk in San Francisco in support of pancreatic cancer research. She organized “Team Willis” — after her longtime nickname for me.

To become part of my team, you don’t have to be a runner, walker, or anywhere near San Francisco now or on the date of the event. You don’t even have to leave your chair. Just go to the “Team Willis” page, click “Donate Now,” and become a member of the Team Willis Honor Roll as you contribute to a worthy cause. (You don’t have to click the “Join Team” link, which is more complicated. “Donate Now” will put you on my team.)

Emma’s response is just one small example of the breadth and depth of support that she, other family members, and friends have provided. I’ll have more to say about that later in this installment. But first, let’s return to my narrative.

A Decided Improvement In My Environment

The bad news about my third hospital admission in three weeks is that it would last 18 days. The good news is that I spent the final two weeks on the specially designated cancer floor. At long last, I’d finally reached the point where I was communicating directly with top specialists who would guide my treatment.

There was a team of hospitalists on the scene, too. But they were oncologists who viewed me holistically — as had the senior GI doctor who ordered a CT scan because he sensed a potential problem that standard endoscopy protocol would have caused a less talented physician to overlook. My new team considered every medical issue in the larger context of my cancer diagnosis. And they had no reluctance to answer my questions by having an attending specialist visit my room personally.

There’s no reason to detail all of the many procedures that followed my definitive diagnosis: neuroendocrine pancreatic cancer. It’s the “good” kind of pancreatic cancer for which life expectancy is measured in years, rather than months. It’s treatable with monthly injections, rather than chemotherapy to which such tumors don’t respond. As an integrated unit under the direction of the cancer specialist who embraced his role as captain of my ship, my team also went to work on the more pressing challenge: my internal bleeding.

To Summarize…

So far, my story has focused on my extended and intimate encounter with the medical system generally, including some of its particularly dysfunctional aspects. Some of that dysfunction is the result of a myopic focus that is too common in modern medicine. Specialists may know their specialities, but sometimes they fail to think outside the boxes that they’ve built for themselves.

Another contributor is the tendency of some doctors to treat specific conditions (or, even worse, numbers associated with various laboratory test results), rather than whole patients. There’s a tendency throughout our society to rely on the false comfort of some metric to guide decision-making. Relying on a number is easy, but without the accompanying wisdom and judgment to give it context, the results can be problematic, or even dangerous.

Perhaps the most ubiquitous factors inhibiting the delivery of better patient care are top-down organizations and the dominant influence of senior non-medical administrators (along with federal government and insurance company reimbursement policies). In earlier times, doctors ran most hospitals. Now, hospital CEOs have MBAs, not MDs. But they set the rules, immutable chains of command, and protocols within which doctors and other medical personnel must operate. According to a recent study published in the NY Times, patient care has suffered as a result of the medical professions transformation to this business orientation. Sound familiar to any big law firm attorneys out there?

On the More Personal Side

I haven’t discussed the more personal aspects of my illness. There’s a reason for that. I don’t want emotional, psychological, physical, or other details of my situation to cause readers to think that I view my journey as courageous. It’s not. Nor do I want to provide ammunition to critics who might think that I’m being self-indulgent, seeking sympathy, or pursuing an agenda of self-absorption.

Still, my narrative would be incomplete without mentioning the value of the support that I have received along the way. My wife has remained by my side from the beginning as she quickly abandoned every aspect of what had been her life as a college professor and private tutor at the time of my first hospital admission. Nurses have become accustomed to providing her with sheets, blankets, and a pillow for continuous overnight stays with me. She now knows where they keep all of that bedding and gets it herself.

Likewise, our three adult children have rallied to my side. I live in Chicago; they’re spread far and wide with significant responsibilities of their own. One son lives in Virginia and has three kids for whom he has principal household responsibility while his wife works full-time. He’s also teaching a college course and working as a research assistant as he finishes his Ph.D. in education. Yet he’s made regular plane trips to visit me in the hospital. Another son lives in Los Angeles. He has been both present and on-call for an expedited trip home whenever necessary.

Our daughter has put in the longest stints at my side — literally weeks at a time. Likewise, my sisters, brother, my mother have made themselves available at any hint from my wife or me that they might be helpful. Friends have been ceaseless in offering their concerns, hopes, and prayers for me and my family. Even readers of this blog who don’t know me at all have provided a surprising and welcome source of cheer. I’m grateful to all of you.

One Patient’s Perspective

All of this is, of course, extraordinary and helpful. But let me pause here to offer an observation: I think that an ordeal like mine is easier for the patient than for those closest to him or her.

Perhaps my response is idiosyncratic. But at least for me, it is genuine. My current condition and response to it don’t make me a hero. I’m just someone with a terminal illness that has introduced great uncertainty into his life. After developing confidence in the professionals treating me, I’ve found myself moving toward a sense of calm resignation about whatever the future holds. As doctors present treatment options, I try to make the most informed decisions possible. But I have little control over where all of it will lead.

That is not to say that I’ve become fatalistic, or even pessimistic. Far from it. Throughout my life, I’ve always seen my glass as half-full. That hash’t changed. “Woe is me” is no recipe for coping with situations like mine. Taking things as they come has developed new meaning as a dominant theme of my life.

But for those watching a patient go through tests, procedures, and the rest, achieving that state of mind is more difficult. The newly diagnosed illness has introduced great uncertainty into their lives as well. Adjusting to that unwelcome situation is a challenge. Being supportive to the patient adds another layer of difficulty in meeting it.

Don’t get me wrong. I don’t relish occupying the “patient position” in all of this. No one would or should. But as I view things currently, the emotional toll on those closest to me seems to be greater on them than it is on me.

Anyway, after 18 days, my third hospital admission ended and I went home. Two days later, our daughter returned to Berkeley.

No one knew for sure whether the internal bleeding problem had been resolved. Thrice weekly monitoring of my hemoglobin level at a local hospital would provide some protection against a dramatic blood loss and related crisis that had led to my third hospital admission. No more trips in the local fire department rescue vehicle for me.

The monitoring plan worked. After my first week at home, my hemoglobin level dropped significantly between Friday and the following Monday morning. When my primary care physician called to give me the Monday morning results, she told my wife and me to return to the major medical center emergency room that we’d seen all too often in recent weeks. My fourth admission would soon begin as the search for the source of my internal bleeding continued. As I write this entry, that admission has lasted for 10 days — and I expect to be hospitalized a while longer.

Never Stop Laughing

As I’d begun telling the specialists who were treating me, I was looking forward to the day when I’d be just another cancer patient. To a person, they appreciated my sense of humor. For me, retaining the ability to generate a laugh was still the best way to deal with adversity.

So here’s my advice: retain your sense of humor. If you don’t have one, then work on it. Someday you might really need it.

 

TREATING NUMBERS, NOT PATIENTS

When my third hospital admission eventually put me on the cancer floor, it seemed that I was someplace where doctors treated me holistically, rather than as a set of unrelated conditions for them to manage. Similarly, the oncological doctors who saw me during regular morning rounds regarded me as a patient, rather than as a compilation of numbers from various test results.

My regular readers — and those who have read my book, The Lawyer Bubble – A Profession in Crisis — know how a myopic focus on short-termism and the metrics that purport to maximize near-term success have undermined the legal profession. Law schools seek to maximize U.S. News rankings, even though the underlying rankings methodology has little to do with the quality of a student’s legal education. Most big law firms obsess over annual Am Law rankings and short-term profits, while ignoring important long-term values that are difficult to measure — including, mentoring, collegiality, and  institutional stability.

Our metrics and data-driven society has swamped the medical profession, too. Don’t get me wrong; I’m not an anarchist. I have a master’s degree in economics and understand the importance of data in making sound decisions. But exclusive reliance on numbers without adequate consideration of context, surrounding circumstances, and potential factors that numbers don’t always capture can lead to incomplete and even incorrect conclusions.

My first two hospital admissions provided many examples of the myopia that can impair judgment and wisdom. During the final hours preceding my first hospital discharge. All eyes focused on whether my blood counts (especially hemoglobin) were high enough to send me home. The previous day’s number was 8.7 — far lower than the 14.5 at my annual physical exam six months earlier — albeit high enough to let me leave. But then on the morning of my scheduled discharge a new number arrived: my hemoglobin had dropped to 8.0.

“We can’t discharge you with 8.0,” the resident said. He was a member of hospital’s internal medicine team — the people who are supposed to take the place of your PCP when you’re in the hospital. “I think the earlier, higher 8.7 number was an outlier.”

A few hours later, the next set of blood tests came back with an 8.7 hemoglobin level.

“I think the 8.0 was an outlier,” the resident said.

It was an interesting approach to statistical analysis: Take the most recent value, compare that number to its predecessor, and declare anything inconsistent with the most recent value an outlier.

I didn’t care. I wanted to go home. Based on everything the GI specialists had told me about the results of my colonoscopy and endoscopy, it seemed that things had resolved themselves.

Except for the elevated blood sugar levels. That led to the resident’s incomplete analysis of a second number.

“You definitely have diabetes,” the resident continued as he gave me discharge instructions.

“How is that possible?” I asked. “At my last physical — and for years previously — my blood sugar levels were well within normal range. I’ve unintentionally lost 25 pounds in two months and was slim before all of that started.”

The resident stared at the numbers on the printout of my lab results.

“All I can say is that you definitely have diabetes. One of these measurements allows us to see how your blood has been for the past three months. You’ve had elevated sugar levels for the last three months. You should follow-up with your PCP. Diet and exercise can make a big difference in controlling diabetes.”

“Until this episode, I was working out for 30 minutes on my elliptical trainer every day,” I  explained.

“Maybe more exercise,” he suggested. “Maybe better diet.”

Likewise, a few days latter when I entered the hospital for the second time, the initial blood work in the ER again showed elevated sugar levels.

“Are you diabetic?” the nurse asked.

“Six months ago, I wasn’t,” I said. “And since leaving the hospital five days ago, my wife and daughter have structured my diet to eliminate sugar altogether.”

“Hmmmm,” the nurse said. “Well, your sugar level is quite high.”

The words of my wife — who is not a doctor — echoed in my head. On the drive toward what would become my first hospital admission, I told her that my PCP had reported high sugar levels from the initial blood test in his office that had everyone focused on my low hemoglobin. Her immediate response: “Pancreas.”

But not until the end of my second hospital stay would the results of a CT scan pierce the general medicine hospitalists’ (and some specialists’) narrow view of what could be happening to me. That scan happened only because a talented GI specialist thought outside the box while performing my second endoscopy. His predecessor had been looking for obvious signs of bleeding. But a different GI specialist did the second endoscopy. Although he didn’t see evidence of bleeding, he saw bulges that led him to worry that pressure might be creating varicies — distressed blood vessels that could produce significant intermittent bleeding. To investigate that possibility, he order a CT scan that revealed the tumor on my pancreas.

The GI specialist who performed my second endoscopy saved my life because he thought beyond the specific condition that he was looking for. His intuition — not subject to a protocol or a metric — was critical. Only then, did I become a patient, rather than a collection of test results and unrelated conditions.

A BRIEF RESPITE AND A NEW MEDICAL TEAM

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.

WRAPPING UP THE SECOND HOSPITAL STAY

My three-night say in the hospital — my second such admission in ten days — was coming to an end. During morning rounds, the hospitalist team pronounced me stable and said discharge would happen soon. Partially dressed and awaiting only the removal of my to intravenous needles, I eagerly awaited my departure.

Shortly before noon, the resident on the hospitalist team — the same person who had dismissed as a coincidence my precipitous hemoglobin drop (and blood loss) during the colonoscopy prep during my first stay — entered the room alone.

“We have the results of your CT scan from last night,” she began.

“Ok,” I said.

“You have a 7.6 cm by 5.6 cm mass at the head of your pancreas,” she continued. “The next step will be something called an EUS and biopsy to determine what diagnosis and treatment options.”

“Ok,” I replied. At that point, my son walked in with his lunch.

“Do you have any questions?” she concluded.

“I don’t think so,” I answered. “We’ll just take it one step at a time.”

“Have you eaten anything today?” she wondered. “I want to check with anesthesiology to see if they can do the EUS procedure later today. We’d like to have you stay in the hospital until you have it done.”

“What’s the point of staying here?” I asked. “Because of the mishandling of the camera endoscopy pack, we won’t have those results for another day, at least. There’s no way anyone will perform an endoscopy/biopsy today because I’ve eaten breakfast and started lunch. I’ll go home and come back tomorrow for the UES, if I have to. But nothing good is happening to me in this hospital right now.”

“I’ll check,” she responded.

A few minutes later, she came back to confirm what I suspected: I wouldn’t have an EUS until the following day, at the earliest. Later, she came back with discharge papers that scheduled it for a week later.

The delayed schedule was fine with me because I now wanted time to investigate and find the very best specialists to pursue the partial diagnosis (and whatever came next) that I had just received. I had numerous sources from which to develop that information and I used them all. I had one chance to get this right and I needed the best possible team — not just whoever happened to be the attending physician at the time set for an inpatient procedure.

“What’s up?” my son asked. I told him what I’d just learned and what would happen next.

A few minutes later, my continuity-of-care medical person — a third-year medical student — walked into the room.

“What’s your understanding of what you just learned?” he asked.

“I have a 7.6 by 5.6 cm mass at the head of my pancreas,” I relayed back to him. “The next step is to do a deep endoscopy, called an EUS, to biopsy it. After I get those results, we take from there.”

“Well,” he said, “that’s about as completely as I could have said it. Would you like to talk to a social worker.”

“No,” I said with a laugh. “For starters, until we get more results, I don’t have any idea what I would talk to such a person about. How about this plan: you help whoever is working on the discharge papers to get me out of here?”

There’s no place like home. Unfortunately, I wouldn’t be there long.

GOOD PEOPLE, GREAT TECHNOLOGY, DYSFUNCTIONAL SYSTEM

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.

PENETRATING THE HOSPITALIST WALL

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.