AMERICAN AIRLINES AGONY

Rarely do I use this forum to discuss personal issues. Earlier this year, I made an exception to inform readers that an unwelcome medical diagnosis of pancreatic cancer had interrupted my weekly posts. As it happened, my 48 days in the hospital provided a unique perspective on our dysfunctional medical system. So as I gained strength, I wrote about that experience. (A book is in the works.) In any event, I’m pleased to report that my progress and prognosis are good.

The outpouring of sympathy and support has been overwhelming. But it hasn’t been universal. Which takes us to the headline for this post.

American Airlines: “Doing What We Do Best”

Twenty-four hours before the first of what would become my five hospitalizations between February and June, my wife and I were scheduled to fly from Chicago to San Francisco on American Airlines. The University of San Francisco School of Law had invited me to its annual Law Review Symposium for a discussion of my book, The Lawyer Bubble – A Profession in Crisis.

Blood test results prompted my doctor to send me to the ER — pronto. Instead of boarding a plane, I was boarding a hospital gurney. After several months of procedures and tests, doctors finally located the source of episodic and life-threatening internal bleeding. One long-term consequence of my condition is that I will remain grounded indefinitely — no air travel.

American Airlines: “The New American is Arriving”

Once it became clear that I would not be able to rebook a flight on American during the one-year period required for our non-refundable tickets, I contacted the airline to seek a refund. (As my principal caregiver, my wife can’t use her ticket either. For better or worse, and for penalties associated with non-refundable tickets…)

The ticket value is significant, but not overwhelming ($870.19 each — for a total of $1740.38). Still, it was worth pursuing.

I called American’s preferred customer number because I’ve been a loyal American flyer for decades. The person I reached was pleasant and cooperative. He found our original reservation, provided ticket numbers, and directed me to the American Airlines website. There, I would click on the customer service link and complete a refund request form.

Shortly after submitting the on-line request, I received a response seeking a physician’s letter confirming my medical plight. Within 24 hours, I scanned and emailed my doctor’s letter describing the cancer diagnosis:

“The complications of his illness include intermittent internal bleeding that renders him unable to travel by air for the foreseeable future… His wife is also my patient and his principal caregiver. As a consequence, she likewise will be unable to travel by air for the foreseeable future.”

Two days later, a customer relations person acknowledged receipt of the letter with this ominous note:

“I have forwarded it to personnel in our accounting office. They are the specialists who review such requests. They will do so and be in touch with you directly.”

American Airlines: “Going for Great”

I knew I was in trouble. The “accounting office” was going to make the final decision about the seriousness of my medical condition in deciding whether to permit a $1,740 refund: “They are the specialists.”

In what?

Five weeks later, I received this nameless form response from a “do not reply” email address:

“After reviewing the documentation submitted, it has been determined the request does not meet our exception requirements.”

“[I]t has been determined…” The passive voice covers a multitude of sinners. But it makes you wonder what the “exception requirements” are and who sets them. More precisely, if my situation doesn’t qualify, what does?

The response continued:

“The ticket purchased is non-refundable so we cannot offer a refund, issue a travel voucher, or transfer this ticket to another person. However, the ticket will remain valid in our system for one year from the original date of issue, at which time it will expire and all value will be lost.”

I know. I can never use the ticket. That’s why I sought an exception.

“The unused non-refundable ticket may be applied to future travel as long as all travel is completed prior to the expiration date.”

Anyone who had read the letter from my physician could never have included that sentence.

“The new ticket will be subject to a change fee based on the fare rules, in addition to any difference in fare or fees that may be in effect at the time of travel. We are forwarding your case to our Customer Relations department for consideration of a waiver for the above stated reissue fee that would be assessed to use your ticket for future travel.”

Lucky me! I might get a fee waiver for a ticket that I will never buy. No one who read my doctor’s letter could have written that, either.

“Please allow time for Customer Relations to review your situation and respond to your case before making additional contact.”

In other words, don’t bother us anymore. My wife received the identical message.

Wrong Without a Remedy

Readers may recognize the subheadings in this post. They are American Airlines’ advertising slogans over the years. The last one — “Going for Great” — is the most recent. Based on my experience, it will never get there.

There’s a lesson for anyone contemplating a flight on American Airlines. When you book a nonrefundable ticket, even the prospect of death from an intervening terminal illness that results in grounding you permanently will not qualify as an exception to the airlines’ “no refund” policy.

There’s a larger lesson, too. American Airlines’ handling of my request is emblematic of a larger societal phenomenon: myopic short-termism. When accountants’ incentive structures displace customer service, the culture of an organization follows that lead.

By the way, feel free to pass this along — retweet, post on Facebook, etc. — and to share your thoughts directly with American Airlines’ customer relations. (After clicking here, select TOPIC: Customer Relations; SUBJECT: Complaint; REASON: Other. After that, you’re on your own.)

I’m sure they would love to hear from you.

SOMETHING NICE TO SAY

My thanks to the many readers who have contributed to my daughter Emma’s fund-raising effort for pancreatic cancer research. My February diagnosis (neuroendocrine pancreatic cancer) has made the cause quite personal. The breadth and depth of your support for our family has been been humbling.

For anyone interested in contributing — even nominally — to a worthy non-profit organization (the Pancreatic Cancer Action Network), there’s still plenty of time. Because she lives in the San Francisco Bay area, Emma is promoting a specific upcoming event, Purple Stride San Francisco 2015 — a 5K family run/walk in San Francisco on May 31. But to join “Team Willis” — Willis is Emma’s longstanding nickname for me — you don’t have to be a runner or, for that matter, anywhere near San Francisco now, on May 31, or ever. Just go to this site and click on “Donate Now.”

Now, Back to Our Story

After my series of posts about dysfunction within the American medical system, it’s worth pausing to reflect on its positive attributes.

Foremost are the professionals dedicated to patient care. The best of the best are willing to take command of challenging health situations, as mine surely is. They utilize their formidable talents to achieve the best possible outcomes. I was fortunate to have several of these individuals working diligently to save my life. Now they’re trying to improve it.

Like most health care workers, these doctors entered the profession with a clear purpose: to do good. Many also began their careers when the medical care delivery system looked much different from its current configuration. Physicians had more influence over hospital policies. Indeed, doctors ran many more hospitals than they do today. Primary care doctors visited their in-patients daily. Continuing relationships and direct contact with patients helped make the physician’s job rewarding.

A Loss of Personal Mission

As it has evolved in recent years, the medical delivery system has destroyed aspects of this physician-patient relationship. Many experienced doctors have lost their feeling of connectedness with patients. That’s a shame because without a vested stake, the doctor who is able to distance himself from a patient has sacrificed an important part of the personal motivation that makes him or her most effective.

Once a physician views a patient as an abstraction who parades through the system as a collection of conditions, symptoms, and test result numbers to be dealt with — and then moved along to make room for the next patient — the medical profession loses a piece of what makes it a profession. There is nothing conscious or even unique about this phenomenon. It’s human nature for people to care more about what they’re doing if they feel a sense of personal commitment to and responsibility for the outcome.

It’s Not Just Doctors, It’s People

Drawing from my own profession — the law — the most effective senior attorneys give young lawyers working on discrete pieces of a large case a sense of how the individual parts relate to the whole. Even better than that, providing a young lawyer with the opportunity to work directly with clients is the ultimate motivator.

As with older lawyers, senior physicians entered their profession in large part because of they wanted to help individuals. A personal connection to patients was important to that process. Many younger doctors — like their modern attorney contemporaries — have grown up in a different environment, namely, a culture of metrics, numbers, and protocols. In that culture, the physician-patient connection takes a back seat to a relatively new concept: medical worker productivity.

Here’s one example. An earlier post in this series discussed how my blood draws occurred at times times that were not only unrelated to patient care, but also undermined it by disrupting sleep at 4:00 am. As it turns out, that particular situation might actually be worse than I thought.

Recently, one hospital worker told me that blood draws in his hospital (not where I stayed) are timed so that all patients can be completed before a pre-determined deadline. That per-patient time limit makes some phlebotomists worry about taking too long, incentivizes them to rush, and causes the needle to miss a patient’s vein on the first attempt. It is the opposite of a patient-centered medical protocol. The alternative: hire more staff and abolish the time limit. But that would add expense and reduce the hospital’s bottom line. My guess is that the timed blood draw rule is not unique.

The current culture has resulted from non-medical personnel imposing rules in the quest for greater efficiency, as any profit-maximizing business does. But medicine and law are supposed to be different. All too often, rules pursuing efficiency and profit (even in a non-profit medical organization) ignore the impact on patient experiences and outcomes.

Myopic Metrics

The business-oriented world of metrics can’t capture the value of things that are not easily measured. Connectedness between physician and patient is one such immeasurable value that has a big impact on patient experiences and outcomes. It also has an effect — not subject to measurement or a metric — on a physician’s motivation and job satisfaction.

That’s what I’ve learned from my contrasting experiences in a single highly-regarded medical center. Once I got past the barriers that I’ve discussed — the hospitalist wall, a myopic focus on numbers, treating individual symptoms rather than viewing my entire situation holistically — I reached doctors who became connected to me. They felt it, and so did I. As a result, we all benefited.

Technology That Saves Lives

A second feature of American medicine that makes it among the best in the world is its technology. The diagnostic and treatment devices that my doctors have used are staggering in their complexity. (They’re expensive, too.) What has evolved into my positive prognosis (relatively speaking) is a consequence of that technology.

The ongoing challenge is to devise a way to preserve the best aspects of American medicine while eliminating its deeply troubling features. I don’t know how the necessary changes will happen. But as I’ve written with respect to a similar devolution of the legal profession — law schools’ undue reliance on U.S. News rankings and law firms’ preoccupation with short-term profits metrics as definitive indicators of success — the first step is exposing the problems.

A U.S. Supreme Court justice’s observation from long ago still rings true: “Sunlight is the best disinfectant.” In law and in medicine, many talented and compassionate people are using remarkable technological advances to do a superb job. But in both professions, we can do a lot better.

Maybe the book that Emma and I have begun to write about my 43-day hospital experience will help. Based upon the overwhelming reader reaction to this series so far, there’s an audience for it — that’s for sure.

“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 get 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.