Why We Revolt

A Patient Revolution for Careful and Kind Care

Victor Montori

• Publisher: RosettaBooks
• Year: 2020
• ISBN:
  9780795352959
• Topic: Betriebswirtschaft
• Subtopic: Pharma-, Biotechnologie- & Gesundheitsindustrie

The Mayo Clinic physician and founder of The Patient Revolution offers a "thoroughly convincing...call to action for medical industry reform" ( Kirkus ). Winner of the 2018 PenCraft Award for Literary Excellence, Why We Revolt exposes the corruption and negligence that are endemic in America's healthcare system—and offers a blueprint for revolutionizing patient care across the country. Through a series of essays and first-hand accounts, Dr. Victor M. Montori demonstrates how the system has been increasingly exploited and industrialized, putting profit before patients. As costs soar, the United States continues to fall behind other countries on patient outcomes. Offering concrete, direct actions we can take to bring positive change to the healthcare system, Why We Revolt is an inspiring call-to-action for physicians, policymakers, and patients alike. Dr. Montori shows how we can work together to create a system that offers tailored healthcare in a kind and careful way. All proceeds from Why We Revolt go directly to Patient Revolution, a non-profit organization founded by Dr. Montori that empowers patients, caregivers, community advocates, and clinicians to rebuild our healthcare system.

Part One

Chapter 1: Cruelty

It was late at the premier teaching hospital in the country, and we were overworked and overwhelmed. Those patients in most trouble had made it in, but many waited outside, a domino line from the threshold of the emergency room to the edge of the hospital. Those inside were on gurneys in the treatment areas. They were in the hallway, on chairs, or on the floor. It was the era of hyperinflation and terror in Lima, Perú. I was one year away from graduating from medical school.

A corpulent and inebriated man came in with a large scalp laceration. One of my colleagues began to clean the wound. She misjudged whether he would need local anesthesia and did not use any. He responded abruptly and violently, taking a bottle with some colored antiseptic solution and hurling it at her head, missing narrowly. Her scream and the red vitreous splash in all directions acted as the Bat Signal. Other doctors in training came rushing to her treatment bay. They first tried to restrain the patient. Soon, the gang in white coats was holding him down and beating him up. When it was over, the man had the original laceration and the swollen, bruised, and cut face the class of 1995 gave him.

What he received in punches, we also delivered verbally to anyone who complained and whom we chose to not simply ignore. This was our emergency room, and these people, the patients, were here to bother us, to interrupt us, to make our day more difficult. We dehumanized the “laceration,” the “foreign body,” or the “appendix” without seeing the destitute and illiterate patients behind those labels. These subhumans were not only unfortunate and fortuneless but, in our eyes, were also careless, irresponsible, and stupid. Like a potent drug, equal parts efficacy and bitter pill, our emergency room could save a life while demeaning it.

Decades of psychological and sociological research explain the behavior of this white-coated mob. But what about the hospital rounds led by senior clinicians? A student six years my senior wrote a graduation thesis in which he noted that rounds at the patient’s bedside almost never acknowledged the patient’s existence: no greeting, small talk, explanations, or elicitation of worries. Perhaps a question, but its purpose was to solve the diagnostic puzzle. Perhaps an exam, but it was to detect a sign. The patient as object, the subject barely noticed.

Yet no one told us we, the trainees, were lacking in care. We ran a complex system of redistribution by which we asked more-affluent patients to bring extra supplies that we would store and use to help poorer ones. We would use one patient’s social assistance card to get free supplies for another who narrowly failed to meet the program’s requirements. Thanks to this work, patients received tests, treatments, and operations; they got better and went home; and we received recognition. Perhaps we cared, but frankly, most of our work was completed to impress our senior residents and attending physicians with our resourcefulness and efficiency.

Occasionally, this churning would be interrupted. Mostly at night, when the hospital was quiet and slow. A sudden frameshift. An abrupt double take. The clinician suddenly noticing the person in the patient. A chair pulled out. A chat.

Lines thrown from one boat to another. Permission to board.

“Who came to visit you today? Who is in that picture at your bedside?”

For an instant, the boats approached, abutted, and their wakes kissed.

Soon, they must diverge, drift, and sail away.

The clinician stands up as a new admission, a “pneumonia,” rolls in.

Elsewhere in the Peruvian hospital, the lab receptionist was sipping his coffee, mixed with the exact amount of milk. Earlier he had filled a bucket with tubes he’d discarded because they did not contain the exact right amount of a patient’s blood required for a test.

“No, no! The patient was a tough stick!” a trainee cried.

The lab receptionist remained unperturbed. The sample was lost, the test not run, and the intern looked bad on rounds. Sometimes samples of several patients were lost or discarded because they came in seconds after the deadline. The receptionist sat and sipped his coffee, satisfied that his exacting work elevated the quality of the laboratory. The intern back at the bedside explained, “I am sorry. I have to draw your blood again.” The cruelty of the protocol, rigidly applied.

On the other side of the world, 18 years later, I met the foremost American diabetes expert. He prescribes the latest medicines. He must do so, he said, because when he goes to meetings or colleagues consult him, he is expected to have experience with the latest advances and technologies. Thus, his patients are among the first to receive recently-approved drugs. Pharmaceutical representatives know this, so they hand him glossy brochures about new medications. He is also often invited to speak at conferences about the experience he has accrued with these drugs.

Once, he and I coincided at a diabetes conference in India. One could easily see the addictive allure of his position. He was treated to luxurious events with guests from the Bollywood scene. At the end of his competent presentation, the host asked the audience to “stand up for a standing ovation.” The expert left in a black stretch limousine. In his talk, he had recommended that local clinicians use treatments with a cost and burden difficult to justify based on existing research. These clinicians, believing his pitch or, perhaps, hoping for his status, would switch their patients — like those of the American guru but much poorer — to the latest drugs. The cruelty of fame.

Back at home, it was time for my patient to refill a prescription. For the pharmacy to refill that prescription, however, the request must be made within 10 days of the previous fill running out. First, the patient remembered to call too early, 11 days before the refill was needed. The system failed the stress test of kindness. “I cannot save your request and process it tomorrow … you need to call again tomorrow.” She forgot. A few weeks later, the patient explained to me why she did not take all of her medicines. “My condition seems out of control now,” she said. Everyone was just doing their job amid the cruelty of their routines, the cruelty of petty rules.

In the news, I learn of a hospital’s accounting department that has partnered with an agency to collect outstanding bills in full. The agency prioritizes the accounts by amount and likelihood of a successful collection. Agents knock on door after door, threatening and harassing destitute families, some still mourning the permanent disability or death of their loved ones. Some of these families had already worked with hospital representatives on a formula to pay their outstanding bills. “Our records do not reflect that,” the collectors say, “and we will go to the end to get our money back.” The cruelty of cold cash.

In other news, a pharma CEO announced to his board that the generic drug they just acquired will have a price adjustment of several thousand percent. Their monopoly on this “market” firmly in hand, he is moving to cash in on behalf of the stockholders. In 2016, this scene replayed in the stories of Daraprim, epinephrine auto-applicators, digoxin, naloxone, and other generics. Blame was allocated to the Food and Drug Administration (for enforcing regulation that slows the approval of generics); to lawmakers (for not regulating pharma’s profits); to company boards (for placing beneficence far behind profits); to payers (for not negotiating drug prices, including Medicare, the U.S. public payer forbidden by law to negotiate them); and to CEOs (for doing anything for their performance bonuses). The consequences were allocated to patients, pricing people out of treatments they needed, and increasing the cost of healthcare for everyone else through hikes in insurance premiums. The cruelty of greed.

Cruelty seems to require that we, as clinicians, dehumanize patients, consider them not like us, not our own kin. That we treat their suffering and dependent selves as a subspecies, as an extreme form of “them” with nothing in common with our humanity. Nothing in their names, their appearances, or their circumstances is able to bridge the distance between us. They are beds, diagnoses, samples, case numbers, or statistics. The expressions in their eyes, the warmth of their hearts despite their impossible circumstances, and a picture kept by a bedside of a granddaughter in a faraway city are all desperate gestures reaching for the call button to make one human notice another.

Cruelty requires policies and procedures that discourage people, even the kindest, from noticing. One set of such policies defines jobs very narrowly. I get paid to do my job, not to worry about the design limitations of a system in which I am no more than a replaceable part, a part that will be replaced if I don’t do what I am expected to do. I am just following orders. These are policies that reward professionals who become uninterested in the concrete downstream consequences of their actions on individual people, and thus behave cruelly.

Cruel policies affect how our work is done. Impossibly busy appointment schedules and heavy patient loads force clinicians, even the kindest, to see patients as a blur, noticing nothing particular about any of them. Policies that place vast distance between the administration and the hospital ward, between the receptionist and the bedside, between the decision-maker and the petitioner. This is a distance from which Ana, Jose, and Susan cannot be distinguished from one another or from other patients, each one reduced to a faceless “them.”

These policies, motivated by the same industrial justifications, often dehumanize not only the patients but also those who are supposed to serve them and help them heal, even the kindest. The dehumanization of clinicians makes them expendable and interchangeable, like lightbulbs. Lightbulbs that, as the cruel system is finding out, can also burn out. And burned-out clinicians and staff manifest a key deficit: the inability to respond to the suffering of a fellow human with empathy. Cruelty incites cruelty.

And yet even amid incidents of cruelty, we find accidents of care. A nurse stayed after her shift to help her elderly hospital patient use his laptop to witness via live video his granddaughter’s graduation. On her way home, a pharmacist took the box of medicines for a sick child traveling in Germany to the main office of the courier company after the prescription missed the courier’s last pickup. Five days after operating on his patient’s hip, the surgeon brought a chair he had at home to the patient’s hotel room to make it easier for him to take a shower. Humans recognizing each other as fellow humans, confounding what others expect of them, overcoming fear and violating the care protocols to make room for care, eschewing reputation in favor of a moment of intimacy that no one may even notice.

The antidote to cruelty is in the humanity of clinicians who, in a moment, remember why they went into healthcare. It is in rejecting the tendency of industrial healthcare to cause cruelty and to make each one of us capable of realizing our infinite potential to be cruel to others. It is in policies that make noticing each other the easiest thing to do. It is in creating space and opportunity for us to realize our equally infinite human potential to care for and about each other.

The “pneumonia” that just rolled in? That is Ms. Seminario. The picture used as wallpaper on her smartphone? That is of her oldest daughter, Carmen. Ms. Seminario is afraid, short of breath, and alone. She dreams of getting better so she can resume her life and embark on an often-postponed new quest. She is getting better for her children.

The clinician leans forward, unhurried.

Lines thrown, coming closer.

His eyes instantaneously sign a one-clause contract: “We are here now, for you and your care only.”

He asks questions and gets answers.

Boats moored together. Permission to board.

Unhurried touch. Examined. Reassured.

With cruelty always a possibility, for a moment, care happens.

Chapter 2: Blur

I waited at the gate until all the passengers had deplaned. Amid the crew came the captain of the A319 Delta flight who had taken me and 128 other passengers from Minneapolis to Boston.

The idea of asking the pilot one question arose from a conversation I had with a leader in quality improvement. As is often the case, the leader made a comparison between healthcare and commercial air travel. This analogy compares the safety record of airlines and the methods by which they achieve it with healthcare’s alleged ability to kill one jumbo jet’s worth of people every day. People like to point out that the analogy breaks down when one considers that, in contrast to doctors and their patients, the pilot shares outcomes with the passengers, particularly if the plane crashes. But my colleague brought up the pilot with an unexpected twist, “Victor, what we need is the experience that reliable airlines offer their passengers. Do you care who the pilot is when you board a plane?”

This was an interesting question, especially because of my background. My mother grew up around airplanes. My maternal grandmother was among the first women in South America to fly a plane. My maternal grandfather was a hydroplane pilot with the Peruvian Air Force and served as a military attaché in Washington, D.C., during World War II. My mother was able, from an early age, to join the jet set and fly, years before quality and reliability were all but guaranteed to the level expected and achieved today. These early experiences have stayed with her. Today, when she flies, she is not comfortable until she verifies lots of grey hair on the captain’s head. While flying, she listens to the engine and keeps her window shade up, interrogating the skies to predict and prepare for turbulence. It is difficult to be relaxed when traveling with her. She had learned that the pilot (plus the copilot, and the technicians that last checked the plane, and others) matter.

That is a very different experience from mine. I travel more than I would like and as a result find myself flying in planes piloted by men and women who are barely more than voices on the PA. They report on the plane’s altitude, the flight path, the expected arrival time, and the weather at our destination. They invite us to sit back, relax, and enjoy the flight. As I stood on the jet bridge, the anonymous professional behind this voice was about to be revealed; I was going to meet the pilot of my Minneapolis-Boston flight.

He (yes, Mom, tall and gray-haired) looked tired as he walked out of the tunnel. He had stood outside his cockpit as people were deplaning, thanking every one of the 128 passengers for flying Delta and wishing them a great day. He had shared some polite laughs with a few who cracked a joke or made a casual remark. After we shared some pleasantries, I asked him, “Did any of the passengers catch your attention?” He slowed his pace and looked at me briefly, “No, not really. At the end of the day they are all a blur.”

A blur.

I had a perfectly reliable flight, arriving safely and on time, piloted by systems, procedures, and a gray-haired pilot for whom the passengers had become a blur. Passengers, other than my mother, did not need to care about who the pilot was. And the pilot did not need to care who the passengers were either. And this, air travel, was the analogy my quality improvement expert colleague was using to advance a new vision for healthcare!

A colleague of mine worked as a physician in the Peruvian social insurance system, in which, impossibly, he was expected to see more than 30 patients in a morning. “What hurts? Let me see. Could be your liver. Take this treatment for now, go get this test, and make another appointment when you get the results. Next!”

Anot...