Thursday, August 21, 2014

In ‘Doctored,’ Sandeep Jauhar Examines a Broken System -

In Sandeep Jauhar's arresting memoir about the realities of practicing medicine in America, "Doctored: The Disillusionment of an American Physician," he describes an interaction he has with a patient at Long Island Jewish Medical Center, where he is the director of the heart failure program. The patient has an abdominal mass and has been transferred to the medical center from another hospital for a preoperative evaluation. Dr. Jauhar tells her that there are some things he needs to figure out before sending her to the operating room.

"Like what is this mass," he says. "Is it cancer? Has it spread?" Neither her paperwork nor the doctor from the other hospital had provided answers.

"Do you know if it has?" she asks, wondering if the cancer has metastasized. He does not. "No one knows what is going on," she says, her eyes filling with tears.

And she is right, says Dr. Jauhar, whose writing has appeared in The New York Times and whose first book, "Intern," chronicled that grueling year of his medical career. "It is hard to imagine such a thing happening in the era of 'my doctor,' " he says, referring to the days when patients primarily had one doctor who knew them well.

It's not news, of course, that our medical system has become dysfunctional. But Dr. Jauhar's personal account shows that brokenness on a human scale, starting with the doctor-patient relationship, which is in tatters.

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Saturday, August 16, 2014

Is Big Pharma Testing Your Meds on Homeless People? — Matter — Medium

Two years ago, on a gray January afternoon, I visited the Ridge Avenue homeless shelter in Philadelphia. I was looking for poor people who had been paid to test experimental drugs. The streets outside the shelter were lined with ruined buildings and razor wire, and a pit bull barked behind a chain-link fence. A young guy was slumped on the curb, glassy-eyed and shaky. My guide, a local mental health activist named Connie Schuster, asked the guy if he was okay, but he didn't answer. "My guess is heroin," she said.

We arrived at the shelter, where a security guard was patting down residents for weapons. It didn't take long for the shelter employees to confirm that some of the people living there were taking part in research studies. They said that the studies are advertised in local newspapers, and that recruiters visit the shelter. "They'll give you a sheet this big filled with pills," a resident in the shelter's day room told me the next day, holding up a large notebook. He had volunteered for two studies. He pointed out a stack of business cards on a desk next to us; they had been left by a local study recruiter. As we spoke, I noticed that an ad for a study of a new ADHD drug was running on a television across the room.

If you're looking for poor people who have been paid to test experimental drugs, Philadelphia is a good place to start. The city is home to five medical schools, and pharmaceutical and drug-testing companies line a corridor that stretches northeast into New Jersey. It also has one of the most visible homeless populations in the country. In Philly, homeless people seem to be everywhere: sleeping in Love Park, slumped on benches in Suburban Station, or gathered along the Benjamin Franklin Parkway, waiting for the free meals that a local church gives out on Saturdays.

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Newly Insured by Health Law, Millions Face a Learning Curve - NYT

PHILADELPHIA — Advocates of the Affordable Care Act, focused until now on persuading people to buy health insurance, have moved to a crucial new phase: making sure the eight million Americans who did so understand their often complicated policies and use them properly.

The political stakes are high, as support for the health care law will hinge at least partly on whether people have good experiences with their new coverage. Advocates of the law also say teaching the newly insured how to be smart health care consumers could advance the law's central goal of keeping costs down, such as by discouraging emergency room visits, while still improving care.

For those reasons, hospitals, clinics, insurers and health advocacy groups around the country are organizing education efforts, aimed particularly at lower-income people who might not have had insurance in years, if ever. The Centers for Medicare and Medicaid Services has jumped in, too, with a project called "From Coverage to Care," which provides educational materials to community groups and medical providers who are trying to teach health and insurance literacy.

"It's not like you enroll and, voilĂ , you immediately know how to use it," said Rebecca Cashman, a program coordinator for Resources for Human Development, a nonprofit group that is trying to help Philadelphians understand their new coverage. "There are a lot of people who really have some big questions about 'what now?' "

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Monday, August 11, 2014

Without Breaking a Sweat, a Doctor Tracks Ebola and Other Epidemics -

The call came in on a Friday morning, as Dr. Michael S. Phillips worked at his desk at NYU Langone Medical Center in Manhattan. A patient had arrived in the emergency room burning with fever after returning from a trip to Liberia.

Dr. Phillips knew instantly what this might mean: Ebola.

Within minutes, he dispatched one member of his staff to make sure that the sick man remained isolated and that doctors and nurses were taking precautions to protect themselves against contracting the virus. Then he turned to a second staff member.

"Stop what you're doing right now," Dr. Phillips told him, and sent him to the hospital's laboratory.

The lab?

Dr. Phillips, the director of the infection prevention and control unit at NYU Langone, was already envisioning what his staff had not: a tube of the patient's blood, loaded with the Ebola virus, landing in the hospital's nerve center and contaminating thousands of blood and tissue samples, endangering lab technicians and potentially bringing operations at the hospital to a halt.

"It bumps your pulse up a bit," Dr. Phillips said, with considerable understatement, as he recalled that hectic Aug. 1 morning.

The patient, it turned out, did not have the virus. But with an Ebola epidemic spreading across West Africa, Dr. Phillips and hospital epidemiologists in New York City are grappling with yet another worry as they go about their day-to-day work of preventing, tracking and controlling potentially deadly infections and diseases.

Last week found Dr. Phillips phoning into a conference call with the city's health department to get the latest guidance on Ebola and updating the hospital's protocols to include Nigeria among the West African countries affected by the epidemic.

Meanwhile, the tall, genial doctor and his staff were keeping tabs on other potential threats: Chikungunya, the mosquito-borne illness that has invaded the Caribbean; the virus known as MERS, for Middle East respiratory syndrome; and far more common maladies like tuberculosis, influenza, measles and the bacterial infections that sometimes surface and spread within hospitals.

Dr. Phillips, 50, is married and the father of three girls, and his mother still worries about his exposure to microscopic bugs.

But he has been hardened by battle after nearly 15 years of working in New York, an international crossroads that draws thousands of far-flung tourists, some of whom carry invisible illnesses along with their travel guides.

"I still get stressed, of course," Dr. Phillips said. "But worry is not a good option. We have to make sure our processes are in place and think about how we can constantly improve our game."

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Wednesday, August 6, 2014

Study: Poor people with diabetes 10 times more likely to lose limb - LA Times

Diabetic people in low-income neighborhoods in California were up to 10 times more likely to lose a leg or a foot than diabetic patients in wealthier ZIP Codes, UCLA researchers have reported.

Their analysis, published online Monday by the journal Health Affairs, pinpointed amputation "hot spots" where as many as 10.7 out of 1,000 diabetic adults ages 45 and older wound up losing a lower limb because of complications of diabetes.

San Fernando, Compton and broad swaths of South and East L.A. had some of the highest amputation rates. In ZIP Codes with the lowest amputation rates -- including many affluent areas such as Malibu, Beverly Hills and Santa Clarita -- no more than 1.5 diabetics per 1,000 lost a limb to the disease.

On the Palos Verdes Peninsula, adjacent ZIP Codes landed on opposite ends of the scale, with South Bay cities having among the lowest levels of amputations among diabetics and San Pedro having among the highest.

"This represents an intolerable health disparity," said study lead author Carl Stevens, a professor of medicine at UCLA's David Geffen School of Medicine. "Where the poor people are is where the amputations are."

Stevens said that the higher incidence of amputations among diabetics in lower-income ZIP Codes was almost certainly related to two factors: difficulties patients in those neighborhoods had in getting access to primary care, and hurdles they faced in understanding how to manage their condition.

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Monday, August 4, 2014

Adventures in ‘Prior Authorization’ -

"Dear Doctor," the letter from the insurance company began. "We are writing to inform you that a prior authorization is required for the medication you prescribed."

That's usually where I stop reading. Thousands of these letters arrive daily in doctors' offices across the country. They are attempts by insurance companies to prod doctors away from more expensive treatments and toward less expensive alternatives. To use the pricier option, you need to provide a compelling clinical reason.

In theory, this is a reasonable way to control costs by making it harder to prescribe costlier medications. In practice, it is a wasteful administrative nightmare, a cavalcade of recurring paperwork, lengthy phone calls and bureaucratic battles.

One study estimated that on average, prior authorization requests consumed about 20 hours a week per medical practice: one hour of the doctor's time, nearly six hours of clerical time, plus 13 hours of nurses' time. Other studies have suggested that prior authorizations could cost individual practices tens of thousands of dollars a year.

The letter in my hand concerned one of my patients, Mr. V., who suffers from stubborn hypertension. His chart is a veritable tome, documenting the years of effort it took to find the combination of four different blood-pressure medications that controls his hypertension without upsetting his diabetes, kidney disease and valvular heart disease or making his life miserable from side effects. We've been on stable ground for a few years now, a state neither of us takes for granted.

But Mr. V. had changed insurance companies, and now one of his medications required a prior authorization. The last thing I wanted was for him to be turned away at his pharmacy and have his blood pressure spiral out of control, so I called right away to sort things out.

Twenty minutes of phone tree later, I discovered that the problem was that I had exceeded a pill limit for one of his medications. Mr. V. needed to take 90 of those pills each month for the high dosage that his blood pressure required. I patiently explained this to the customer-care representative.

Equally patiently, she told me that 45 pills a month was the maximum allowed for this particular medication.

Three more phone trees and three more customer-care representatives later, my patience was flagging. Apparently a request for 90 pills was flummoxing the system. Representative No. 4 asked me to list all the blood-pressure medications that Mr. V. had been on in the past, including dates of initiation and relevant lab values, a request of epic proportions in his case.

The representative went down her checklist. "Would taking 45 pills per month instead of 90 pills adversely affect Mr. V.'s health?" she asked.

At first I thought she was joking. "Well," I replied, "it would probably make his blood pressure shoot up in the second half of the month."

She paused, then asked her next question with the encouraging uplift of suggestion. "Has Mr. V. ever tried 45 pills per month instead of 90 pills?"

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Then I realized that she was not joking. "Are you out of your mind?" I hollered into the phone. "It's taken years — years! — to find the right combination of meds to control his blood pressure without killing his kidneys or making him dizzy or nauseated or depressed or ruining his libido or running his potassium off the charts or breaking his bank account. Do you really think I'm going to randomly jiggle the dosages just for the hell of it?"

"A simple yes or no will suffice, doctor."

Prior authorization clearly saves money for the insurance companies, at least up front. Many physicians simply give in, because the process is just too arduous.

But prior authorization ultimately ends up costing the health care system. The time and money that medical practices devote to prior authorizations could surely be put to better use for patient care. And it's not even clear that insurance companies save money in the long run. One study examined the records of more than 4,000 patients with Type 2 diabetes who were prescribed medications requiring prior authorizations. Those who were denied the medications had higher overall medical costs during the following year; not getting the medications probably worsened their conditions.

I bit my tongue for the remainder of my conversation with the insurance company, holding back long enough to obtain the prior authorization that would allow Mr. V. the 90 pills he needed each month. I tried not to break the phone when I finally slammed down the receiver.

I'm all for controlling medical costs and trying to apply rational rules to our use of expensive medications and procedures. But in the current system, everything seems to be in service of the corporate side of medicine, not the patient. The clinical rationale and the actual patient — not to mention the doctors and nurses involved in the care — are at best secondary concerns.

In the end, we were able to keep Mr. V.'s blood pressure under control. My blood pressure, however, was a different story.

Danielle Ofri, an associate professor at New York University School of Medicine, is the author of "What Doctors Feel: How Emotions Affect the Practice of Medicine."

Sunday, July 20, 2014

Dislocation, Italian Style -

"SCUSI," I said, calling a nurse in the same tone of casual deference used to summon a waiter, trying to ignore the pain that was blaring like a siren in my mind. It was a glorious day in Milan, and I had planned to spend it having lunch with a colleague, visiting a favorite museum, shopping for shoes. Instead, I found myself staring at the emergency room ceiling in the Ospedale Gaetano Pini, which the ambulance driver assured me was the best orthopedic hospital in the north of Italy. "People come from all over to have surgery here," he said.

It seemed safe to say that few, if any, had come as far as I had. The first time I dislocated my artificial hip, in Pittsburgh, where I live, the hospital staff had propelled me from E.R. to O.R. with an all-hands-on-deck sense of urgency. Now I'd done it again. But the attendants in Milan seemed to be in no hurry. They moved among five of us lying broken on our gurneys and asked desultory questions (any allergies?) as if we were making conversation on a train.

A guest in a country not my own, I was determined to be respectful and congenial. Two nights earlier, I'd been out to dinner in Venice when the American couple at the next table asked a woman nearby to stop smoking. The offender obligingly exhaled in the opposite direction while noting that we were outside, for God's sake; the wife continued to wave her arms as if clearing the air after a stovetop grease fire. Even in this hospital, it was clear that there were local customs at work, and I intended to abide by them.

My eyes kept returning to an LED sign like the one behind the counter at my local butcher. Red numbers appeared in no discernible order. Nor did they seem to correspond to my fellow patients' comings and goings through the doorway that led to relief. It was unnerving and disorienting, this failure to make sense of the system. And I couldn't even blame a language barrier. I had lived in Milan for five years at the end of the '90s, and although my command of Italian now wobbles on occasion, I suddenly heard myself speaking complex sentences without hesitation, tossing off words I didn't know I knew. Adrenaline had apparently kicked my brain into a higher gear, as if the past subjunctive might improve my chances of survival.

Eventually, I was wheeled into an examination room and greeted from a desk on the far side by a silver-haired, Hollywood-handsome doctor whose black-rimmed glasses gave him the vaguely preposterous air of Cary Grant in the role of a paleontologist. Remaining seated, he interrogated me on my medical history, as I, still lying flat, turned my head and replied through the bars of the gurney's railing. A resident in scrubs stood alongside. Any surgeries? Two hip replacements. Where? New York. Two revisions to correct the botched second replacement. Where? The Mayo Clinic. "Rochester!" the resident exclaimed. I hoped the fact that I had been to Mecca would work in my favor here, unlike in some American hospitals, where the mention of the Mayo Clinic seemed to set off cherry bombs of intramural resentment.

The interview over, I was remanded to the holding area. Hours passed. The pain got worse. I was running out of charm.

"Scusi," I said, my voice pitched higher than intended this time. The nurse asked me to rate my pain on a scale of 1 to 10. In the past, I'd been instructed to think of 10 as the worst pain I had ever experienced. On that basis, my pain was an 8. Signora, the nurse replied, shaking his head, if it were an 8, you would be unable to speak. I lay there, contorted, wondering whether the Italians had recalibrated the scale to encompass the worst suffering over the course of human history, saving 10 for saints who were beheaded, shot full of arrows, crucified upside down, whose bones were now enshrined in churches all over the country.

At long last, early that evening, I was wheeled to the O.R. Cary Grant would attempt to put my hip back in place by manipulation, without an incision. This is the best-case scenario, but it doesn't work every time.

And it didn't work this time, I was informed when I awoke. They would try again the next day. I was wheeled to a double room upstairs, where a nurse, in response to my request for water, informed me that the hospital didn't provide water; my friends could buy it for me from a vending machine in the lobby.

As a patient in American hospitals, required to recite my name and date of birth at the start of every conversation, to initial my thigh with a felt-tip pen before surgery, I have been amazed at the extent to which our propensity for lawsuits has shaped our system. And yet, annoying and absurd as these crosschecks may be, the absence of them in Milan was disconcerting. As was the lack of obsessive data tracking: no bedside monitors displaying heart rate and respiration, no middle-of-the-night intrusions by nurses wielding blood-pressure cuffs and thermometers.

I was given a pill and told to swallow it. What is it? I asked. The nurse sighed. It's standard, Signora, she said. So much for the patient's right to know. A nurse entered, pulled aside my gown, stabbed a needle into my abdomen and exited. Back home, I viewed doctors as my partners in the healing process, but not here — my life was in these people's hands, and they would decide what information I needed. I recalled a conversation with an Italian friend whose father's doctor diagnosed cancer and gave him two months to live. I asked how he had taken the news. The doctor had told the family, she replied, but not the patient.

The O.R. for the second time was filled with laughter and banter, swirling above and around me like ripples on the surface of a pond as I lay on the bottom. A male nurse feigned annoyance with an attractive colleague. The surgeon made some joke, and I scrambled to find a comeback. The atmosphere was completely out of keeping with the hushed gravity of American O.R.s, which, in my experience, bore more resemblance to a church service than a party. The Italians I have known and loved are fun, funny, cynical, flirtatious, spontaneous, determined not to let their work interfere with their lives. It occurred to me, as I waited for the anesthesia to turn out the lights, that none of these were qualities I wanted when it came to my health care.

But this time, success. I was immobilized in a brace and returned to my room. A priest entered. "Buongiorno," he greeted me, his eyes taking in the other bed, now empty, and my night stand, where a friend had placed a dozen roses and a tiny jade Buddha. Nice flowers, he said, and left.

If Italian patients were expected to be quiescent to a degree I found incomprehensible, perhaps it was because their relationship to their doctors was more paternalistic than any I had ever known — or wanted. My mother, when she underwent thyroid surgery back in the '60s, regarded her doctor as infallible. But our faith in medicine and its practitioners has since been eroded by a growing awareness of side effects, infection, malpractice and class-action suits. Are errors and complications more common in the United States? Or do Italians, however reluctantly, take bad outcomes in stride, resigned to their fate, while we Americans respond with indignation and crusades for restitution?

Edward T. Hall, the cultural anthropologist who advised members of the State Department in the '50s, wrote that you can live in another culture all your life and you will never completely understand it, but you will come to understand your own. You might think that sickness and health would transcend the differences that put people from disparate countries at odds. But over three days at the Ospedale Gaetano Pini, I came to realize that my assumptions when it comes to medicine are completely in keeping with my bedrock American outlook on life, which, like it or not, revolves around money. As a consumer, I go into every transaction, even surgery, with an expectation of the service I'm entitled to and feel shortchanged when I get anything less.

In advertisements featuring athletes and ballerinas, hospitals in the United States claim to make their patients good as new — a foolproof selling point in a nation of perfectionists fixated on youth. Physical decrepitude, to our way of thinking, is not universal human destiny but a condition that can be forestalled by those who have the means and make the effort. This refusal to come to terms with our own decay is, finally, no more realistic than blind faith in fellow mortals ordained as doctors.

Just before I left the hospital, the resident who knew the Mayo Clinic dropped in to say goodbye. I hope we haven't given you a bad impression of Italian medicine, he said. I assured him that I was grateful for everything they had done.

Friday, July 18, 2014

Fighting a One-of-a-Kind Disease - Seth Mnookin - The New Yorker

Matt Might and Cristina Casanova met in the spring of 2002, as twenty-year-old undergraduates at the Georgia Institute of Technology. Cristina was an industrial-design major with an interest in philosophy; Matt was a shy computer geek obsessed with "Star Trek." At first, Cristina took no notice of him, but the two soon became friends, and that fall they began dating. Within a year, they were married.

The couple had their first child, a son, on December 9, 2007, not long after Matt completed his Ph.D. in computer science and Cristina earned her M.B.A. They named him Bertrand, in honor of the British philosopher and mathematician Bertrand Russell. After a few blissful weeks, the new parents began to worry. Matt and Cristina described Bertrand to friends as being "jiggly"; his body appeared always to be in motion, as if he were lying on a bed of Jell-O. He also seemed to be in near-constant distress, and Matt's efforts to comfort him "just enraged him," Matt says. "I felt like a failure as a father." When the Mights raised their concerns with Bertrand's doctor, they were assured that his development was within normal variations. Not until Bertrand's six-month checkup did his pediatrician agree that there was cause for concern.

By then, Matt had a new job, as an assistant professor at the University of Utah's School of Computing. It took two months to get Bertrand on the schedule of a developmental specialist in Salt Lake City, and the first available appointment fell on the same day as a mandatory faculty retreat. That afternoon, when Matt was able to check his phone, he saw that Cristina had left several messages. "I didn't listen to them," he told me in an e-mail. "I didn't have to. The number of them told me this was really bad."

Bertrand had brain damage—or, at least, that was the diagnosis until an MRI revealed that his brain was perfectly normal. After a new round of lab work was done, Bertrand's doctors concluded that he likely had a rare, inherited movement disorder called ataxia-telangiectasia. A subsequent genetic screen ruled out that diagnosis. When Bertrand was fifteen months old, the Mights were told that urine screening suggested that he suffered from one of a suite of rare, often fatal diseases known as inborn errors of metabolism. During the next three months, additional tests ruled out most of those ailments as well.

As Matt tried to get a foothold in his new job, Cristina struggled to care for a wheelchair-bound child whose condition seemed to worsen by the day. When Bertrand was hospitalized, she would stay by his bedside, often neglecting to eat; the constant stress contributed to osteoarthritis so severe that her doctor told her she'd need to have her right knee replaced. In April of 2009, the Mights flew to Duke University, in Durham, North Carolina, to meet with a range of specialists, including a geneticist named Vandana Shashi, whose clinical practice focusses on children with birth defects, intellectual disabilities, and developmental delays. After five days of tests and consultations, the Duke team told the Mights that there was widespread damage to Bertrand's nervous system and that some of his odd behavior—wringing his hands, grinding his teeth, staring into space—was likely due to the fact that his brain appeared to be suffering from spikes of seizure-like activity.

When Bertrand was a newborn, Matt joked to friends that he would be so relaxed as a parent that he wouldn't care which technical field his son chose to pursue for his Ph.D. In May of 2009, the Mights closed Bertrand's college savings accounts so that they could use the money for medical care. That fall, Bertrand was rushed to the emergency room after suffering a series of life-threatening seizures. When the technicians tried to start an I.V., they found Bertrand's veins so scarred from months of blood draws that they were unable to insert a needle. Later that evening, when Cristina was alone with Matt, she broke down in tears. "What have we done to our child?" she said. "How many things can we put him through?" As one obscure genetic condition after another was ruled out, the Mights began to wonder whether they would ever learn the cause of their son's agony. What if Bertrand was suffering from a disorder that was not just extremely rare but entirely unknown to science?

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Monday, July 14, 2014

Why Smart People Are Dumb Patients - The Daily Beast

People who otherwise seem educated and rational continue to refuse vaccinations for their children due to a long-discredited study falsely linking vaccines to autism. They choose herbal remedies instead of well-researched medications and operations to treat serious illnesses like cancer. They flee from modern medicine to visit any other guru possible. But at what cost? What is fueling the mistrust?

Steve Jobs is a classic case in point. In Jobs' 2011 biography, author Walter Isaacson highlighted a tragic mistake fueled by hubris. Jobs could have been very fortunate; a medical exam for something else incidentally picked up an early pancreatic carcinoma. Although pancreatic cancer is usually deadly, Jobs' tumor was felt to be curable with immediate surgery. Yet this brilliant inventor, who revolutionized modern technological society, refused the recommended surgical procedure. He chose herbal treatment instead. By the time he noticed nine months later that he wasn't getting better, it was too late. His tumor had spread, and the next six years became a painful game of catch-up, one that he ultimately failed.       

Isaacson muses, with good insight, that Jobs' tendency toward "magical thinking" was what did him in. In psychology, magical thinking is a term referring to a type of primitive rationalization used by children, before maturity brings about abstract thinking. This thinking can seem innocent and endearing in children; if you will it, it will be. There is a simple optimism in the notion that anything can happen if you want it to. It's only the brick wall of logic that brings the fantasy ride to a bracing halt; adulthood teaches us that there are laws to the world around us that we, for better or worse, have to adapt to. There is no Santa Claus. The Earth isn't flat. People die. Science becomes the lens through which the adult brain peers at life; and the view isn't always pretty.        

Yet even as adults, many of us still cling to the wishfulness of childhood wonder. In some cases, it can be a magnificent and inspiring force. Not unlike the mantra of the movie Field of Dreams—build it and they will come—the power of the human imagination can be transformative. Jobs was willing to think outside the box, literally and figuratively; he combined elements of intuitive playfulness with the usually dry complexity of computer science. He made adult-level toys for the masses, because he believed in his own dreams.         

But sometimes one needs to sober up. In particular, the area of modern medicine seems particularly feared by people who otherwise employ reasonable amounts of logic to the world around them. It's perfectly normal—important, even—for people to be anxious about health and illness. Life and death are nothing to joke about. Yet the hardest thing about illness for people to face can be the lack of control, the uncertainty around one's fate. People notoriously avoid the doctor for this reason; magical thinking pops in. If no one tells you you're sick, you're not sick. So don't let the doctor tell you you're sick. Never mind that it's the doctor who can cure you.        

Say one does finally go to the doctor, gets the bad news, and then gets the doctor's recommended advice on treatment. A typical physician goes through 14 credits of tough pre-medical science and mathematics college courses, takes a difficult admissions exam, and only 5-10 percent of these hardworking candidates get accepted to medical school. After two years of intense advanced-level biology and biophysics courses (likened by many to "drinking from a fire hose") and two more years of rapid-fire clinical rotations, one enters residency for another four to seven years, and often an additional fellowship after that.      

Still, many patients fall into the rut of "noncompliance," or "nonadherence" as it has more recently been termed: the refusal, intentional or not, to follow a doctor's medical recommendations. Skipping visits, medications, lab work, and procedures.         

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Thursday, June 19, 2014

Who Can Speak for the Patient? -

Our patient was never going to wake up. He had an unrecoverable brain injury. The prognosis had become clear over time. As the patient's attending physician in the intensive care unit, I arranged a meeting with his sister, the only visitor we'd seen for days, and explained. She was resolute. "He'll wake up," she said. "He's a fighter. Do everything you can to keep him alive."

The next day I told the social worker what the patient's sister had said. "What about the wife?" the social worker asked.

That was the first I'd heard of a wife. A spouse is the official next of kin. No decision should ever be made without the spouse. But I hadn't known she existed. I discovered that she visited the patient after her work shift, usually at 8 p.m. By that hour, our team was gone. The doctors on night duty were on for emergencies, not conversation. And so she was invisible to us.

How could we have missed this most basic and vital piece of information? It's easier than you might think. The sister didn't get along with the wife and apparently wasn't moved to tell us of her existence. The social worker had been out sick, and his replacement assumed that we knew. And we had a concerned sibling at the bedside who fulfilled our mental checkbox for who makes an acceptable surrogate decision-maker.

We hastily called a meeting with the wife. She arranged to leave work early, and she met us in our conference room. Feeling a combination of shame and relief at the averted disaster, we apologized for not being in touch. We didn't mention that we hadn't even known about her.

She was shocked by our grim prognosis. Angry. But then, with resolve, she stepped into her role as decision-maker. He would never want to live this way, she said. His father had suffered a devastating stroke years ago and her husband had remarked several times, "Don't keep me alive if I'm like that." She wanted to bring him home immediately with hospice support. Another day in the I.C.U. would have gone completely against his wishes.

As Dr. Atul Gawande described so beautifully in his book "The Checklist Manifesto," checklists improve medical care. I use a variety of them on my daily I.C.U. rounds. One assesses each organ in the body, moving systematically from nose to toes. Another evaluates settings on the breathing machine.

By systematizing my approach, I'm confident that I'll always remember the many different steps involved in treating a patient with cardiac arrest. I'll be more prepared to start tube feedings or begin to wean the patient off the ventilator when the time is right.

But despite my checks and balances, I had almost allowed the wrong person to make crucial decisions for this vulnerable patient. And I had nearly excluded a wife from her rightful place on her husband's team. Missing this crucial piece of information would have caused far more suffering and damage than any miscalibration of a ventilator.

I realized then that I needed another checklist, one that puts patients, and not just their organs, in the center. It would account for the human needs that we weren't always taught to prioritize, ones that didn't seem fatal if overlooked — clearly identifying the patient's next of kin, communicating with the family and identifying the goals of care, asking about symptoms like pain, delirium, shortness of breath. My critical oversight would not have happened had I sought out the social worker on the first day to confirm the true next of kin. He thought I knew. I thought I knew. We both were wrong.

Now, years after that incident, I use my patient-centered checklist on every critically ill patient I see in intensive care. After I go through the cardiovascular system, the pulmonary system, the kidneys and the ventilator settings, I turn to the presenting resident and say, "Now let's do the patient-centered checklist."

I have never since misidentified a surrogate decision-maker. And I know that I am doing a better job at managing my patients' symptoms. A checklist that addresses the human needs of a vulnerable patient is as crucial as those that deal with his organ function. After all, care is about the whole patient, not just his parts.