“IT’S HOSPITAL POLICY…”

When a patient tries to get a doctor to focus on his or her specific situation, the least helpful words from the doctor are: “It’s hospital policy…” Add the doctor’s effort to calm the patient with “I understand your frustration,” and then combine it with the physician’s admission: “I haven’t reviewed your file.” Now try to restrain yourself as it becomes clear that she has no intention of ever doing so.

The VRE Mystery

In “Computerized Information Overload,” my VRE blood infection illustrated the problem of overwhelming health care workers with too much patient information. A few days after my post, a doctor’s essay in the Sunday New York Times reaffirmed more generally my observations about the problem.

In my living example, during my third hospitalization I contracted a blood infection — VRE — almost certainly as a result of minimally invasive procedures to stop a pesky GI bleed. Powerful antibiotics squashed the infection and I went home. When I showed up a week later in the emergency room, they put me in isolation. I had no idea why until 10 days later, when my nurse told me that my record showed that I had a history of VRE.

That evening, another nurse undertook a comprehensive view of my file and concluded that I never required isolation because the VRE infection was blood-based. The sign on my door came down; those entering my room no longer downed flimsy disposable “isolation” gowns.

Problem solved? So it seemed. For the next five days, no health care worker visiting me wore the plastic blue gowns.

Groundhog Day

On the sixth day, another nurse showed up wearing an isolation gown.

“I’m here to do your rectal swab,” she said.

“Why?” I asked. “Last week, a nurse went through my file to discover that I had a blood infection VRE. It’s been gone for weeks.”

“I’m just following the directions I got from the infectious disease nurse,” she said.

After I explained the backstory, my nurse acknowledged the confusion: “I’ll have the infectious disease nurse call you.”

“No,” I said. “Not a nurse. I want to talk to the infectious disease attending physician. Let’s straighten this out once and for all.”

An Incredible Conversation

About 15 minutes later, the phone rang.

“Mr. Harper, I’m the infectious disease doctor,” said the voice on the other end. “I understand you have some questions about our isolation policy.”

“No,” I answered. “I have a problem with the confusion surrounding the handling of my situation. I don’t know how familiar you are with my case.”

“I’m not familiar with your case at all,” came her stunning admission. “I haven’t reviewed your file.”

Seriously?

“I just want to explain to you what our policy is. When you have a positive VRE, you have to test negative by rectal swab for three consecutive weeks before you are removed from isolation.”

“Well, the fact that you’re not familiar with my file is the whole problem,” I said. “There’s no continuity of care in this place and important information about me is not getting through.”

I then explained my situation to her. She listened, and then responded as if she hadn’t heard a word I’d said.

“I understand your frustration,” she said. “But you understand that we have hospital policies to protect health care workers from transmitting VRE. We follow national guidelines in that respect. Hospital policy requires that you have three negative swabs — each one a week apart — before you can be removed from isolation.”

“Well, in my specific case,” I said, “about which you have told me you know nothing, you’ve already blown two other hospital policies,” I said. “No one swabbed me a week after my admission.”

Silence on the other end of the phone.

“Then, five days ago, my nurse determined that I never had VRE for which a swab is appropriate. She removed the isolation sign on my door. Every health worker since then has entered my room without putting on a disposable gown. So there’s policy violation number two.”

“You were in isolation because of your history of VRE,” she responded. Now she was talking in circles. “It’s up to the individual initiative of the nurse to take swabs that get patients out of isolation.”

“Are you an attending physician?” I asked. She said she was.

“Do me a favor,” I said as I concluded my losing battle. “In a quiet moment, I want you to reflect on this conversation. I don’t care whether I get swabbed. That’s not the point. The point is that you haven’t reviewed my file and you have no idea whether the policy you’re defending has anything to do with me, the patient.”

I hung up and summoned the nurse.

“I give up,” I admitted. “Go ahead and swab me.”

After the standard 72-hour period for processing the culture, the lab hadn’t posted the results. Day four: still nothing posted and none of the nurses could figure out why it was taking so long. Finally, five days after the swab and as I was getting discharged from the hospital, I asked the resident to see if the lab had posted the results.

“Here it is,” he replied as he viewed the computer screen. “It says ‘Rare VRE.’ I think it means ‘not very much.’ But the next time you come back to this hospital — hopefully never — it will carry forward to show that you’re VRE-positive.”

I didn’t care. After 19 days in the hospital — bringing my cumulative in-hospital tenure to 43 of the prior 60 days — I was going home.

By the way, lest you think that I have only bad things to say about America’s medical care delivery system, my next post will discuss its best feature: the outstanding health care workers who change patients’ lives for the better.

 

BIG LAW — BIG MED — BIG MESS

A month ago, I informed readers that I was taking a break from my ongoing commentary on the legal profession. Instead, I’ve focused my blog on my personal journey through modern medicine after my cancer diagnosis. The American Lawyer, which has republished all of my “Belly of the Beast” blog posts for the past five years, ran the post inaugurating my new series. But I haven’t asked it to republish my eight subsequent medically-oriented posts, which seemed beyond the interests of its primary readership. For reasons that will become evident, I’m inviting republication of this one.

Having spent almost 40 of the past 50 days in the hospital, I’ve had an intimate look at the medical care delivery system from inside one of the nation’s top institutions. I’m now convinced that many big hospitals and law firms share an important characteristic: a lost sense of mission.

This criticism doesn’t apply to most lawyers or to doctors individually. Dedicated, conscientious physicians and attorneys abound. But the devolution of the leading segments of both professions to short-term business-oriented approaches has resulted in structures and constraints within which many of those practitioners must operate. Ultimately, clients, patients, and the workers within those institutions are paying the price.

How Did This Happen?

Not that long ago, doctors ran many hospitals. Today in the United States, only four percent (235 out of more than 6,500 hospitals) are run by physicians. Along the way, the quality of a patient’s experience has suffered.

As the New York Times reported recently, “[N]ew research suggests that having a doctor in charge at the top is connected to overall better patient care and a better hospital.”

“Dr. [Amanda] Goodall [the author of the study] said the finding was consistent with her research in other fields, which has shown, among other things, that research universities perform better when led by outstanding scholars and that basketball teams perform better when led by former top players.”

Dr. Goodall goes on to observe, “M.D. C.E.O.’s are more likely to prioritize patients because patient care is at the heart of their education and working life as a physician. When it comes to making hard budgetary decisions or rationing choices, M.D. C.E.O.’s may be able to make more informed decisions.”

Keeping The MBA-Mentality In Check

I’m not an anarchist. I have a master’s degree in economics and understand the importance of data-drivien decisions. But I also appreciate the limitations of statistics and the dangers of a myopic MBA-type approach to management. There is nothing wrong with using accounting and business methods in the process running complex organizations, including big hospitals and law firms. But when those methods dominate institutional culture — setting the tone from the top of a hospital or law firm — those organizations no longer exist to serve people. Instead, they develop a new purpose: to serve the short-term bottom line.

As Dr. Goodall suggests, ““I think the pendulum may have swung too far in the favor of managers. This is partially because business schools have become so prominent, as has the M.B.A. These qualifications are helpful, but it is possibly not enough just to have a management education.”

Lawyers still run most big law firms, but the trends toward non-attorney CEOs and non-attorney managers developing increasing power and influence within big firms is well underway. More pointedly, many lawyers in big firms have obtained MBAs and are increasingly relying on their newly-learned “management tools” to run their firms. That can be okay, provided they do not become too fond of their “MBA-hats” and lose sight of their more important JD mission — to serve clients. It’s easier said than done because maximizing short-term partner profits is how such leaders — and their partners — measure successful leadership.

Back To Basics

Most undergraduates go to law school because they want to do good. That message has emerged loudly and clearly from my prelaw students over the nine years that I’ve taught undergraduates at Northwestern’s Weinberg College of Arts & Sciences and over the more than 20 years that I’ve taught trial practice and legal ethics courses at the Law School. A similar impulse drives most people into the medical profession. Just as every lawyer’s mission should be to serve clients, medical care should be about a single-minded mission: patient care.

The dominant big law firm model has evolved away from helping clients and toward maximizing a firm’s short-term profits through a handful of definitive metrics — billable hours, hourly rates, equity partner leverage. Likewise, big medicine — if I can call it that — has succumbed to similar pressures — maximizing relative value units (medicine’s equivalent to the billable hour metric), minimizing costs, and squeezing workers in an effort to improve “productivity,” to name a few.

Similarly, a dominant and incorrect perception in both professions is that bigger is always better. The number of law firm mergers sets a new record every year. Hospital merger and acquisition activity is ubiquitous.

Lost Along The Way

Bigger isn’t better. As with law firms, increasing the size of hospitals works against efforts to create a sense of community, collegiality, and shared mission. Likewise, cost-saving isn’t appropriate when non-medical CEOs with MBAs introduce efficiency measures that ignore the potentially adverse impact on patients.

For more than two weeks, I’ve lived through situations that illustrate my point. For example, I don’t know the metric by which administrators set what they regard as appropriate staffing levels. But one nurse told me that some floors are regarded as “heavy” — meaning that patients have conditions that can require a lot of attention. That translates into greater demands on a nurse’s time. But if there aren’t enough nurses to handle the workload, the burden falls on those who are around. Transferring to a different floor or facility becomes an escape route. It would be interesting to study the nurse “attrition rate” from the “heavy” floors.

Law And Medicine

In the prevailing big law firm model, overworking people — attorneys and staff — maximizes revenues while controlling costs. One consequence is a five-year associate attrition rate for big law firms averaging 80 percent. In other words, for every 100 associates who begin their careers at a large firm, only 20 will still be working there five years later. Other consequences are more difficult to measure so they gets ignored: the decline in worker morale and the lost productivity that results.

Do extraordinary associate turnover rates serve client interests? No. Do they foster a climate in which a shared mission of client service becomes the institution’s dominant ethic? No. Do they reflect short-term profit-maximization goals that are completely inappropriate for a profession that should regard itself as better than that? You bet.

Other instances from my medical experience seem equally divorced from what should be a central focus on the patient. They may seem trivial, and none is life-threatening. But collectively they reveal something about institutional focus.

For example, a patient may require periodic blood draws, but the doctors defer the timing of those draws to whenever the phlebotomists are “doing everyone else on the floor.” That might be efficient, but on my floor, that designated time is 4:00 am. Why does efficiency in the use of phlebotomists trump the patient’s need for sleep?

Here’s another: At 11:00 pm, when all of the lights in my room were out and I’d just fallen asleep, someone came in and emptied all of the trash cans. The following morning, I asked the nurse, “Who decided that 11:00 pm was a good time to go around waking people up to empty their trash?”

“That’s just when they come around,” she answered.

These and many other dictates from above govern behavior throughout the hospital. Where does the patient fit in the process of pursuing worker efficiency? At least when it comes to blood draws and trash removal, nowhere, it would seem.

Shakespeare Updated

Scholars still debate the meaning of Dick the Butcher’s line in Shakespeare’s Henry the Sixth: “First thing we do, let’s kill all the lawyers.” Were the Bard’s words — speaking through that anarchist — backhanded praise acknowledging attorneys as the source of law and order? Or was he going for the laugh that the play evidently received from contemporaneous audiences that had become weary — as Shakespeare himself had — of the misery that litigious lawyers could inflict on a person’s life?

Regardless of that controversy, I hereby invite debate on a new version of that line. I’ve adapted it to today’s medical and legal worlds: “First thing we do, let’s kill all the MBAs in big law and big med — so doctors and lawyers can recapture their professions.”

Actually, we don’t have to kill the MBAs. We just have to keep them in their proper place.

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.