Tagged Doctors

Problems With Your Hospital Care? Speak Up!

My dad was in excruciating pain over Labor Day weekend, so my mom rushed him to the emergency room of a renowned university hospital.

Doctors determined that he needed surgery that night, and luckily I was able to fly in and see him before he was wheeled away. “Take care of your mom if anything happens to me,” he said as my mom and I wept.

Thankfully, my dad made it through. But he had to spend 11 days recovering in the hospital, a place he now equates with prison.

One night, he suffered for five hours, desperately calling for help after his pain meds had run out. A nurse’s aide stationed in his room had fallen asleep.

“I called on the intercom so many times, and nobody showed up,” he recounts.

That was just one of the many failures in care that we encountered during my dad’s stay. Others included inconsistent nursing quality, waiting all day for doctors to respond to pages, insensitive communication of bad news, trying in vain to reduce noise levels so my dad could sleep, and so much more.

My job is to give you advice on health care and insurance issues. My mom is a registered nurse. Yet we both felt frustrated that we couldn’t make things better for my dad.

Unfortunately, this happens to a lot of people. “Everything you hear these days is about patient-centered care, this and that,” says Terry Bay, who owns a Casper, Wyo.-based business that provides advocacy services to older patients. But “we don’t live in a patient-centered health care environment.”

Today I’m going to offer advice for you in case you or a loved one lands in a hospital.

There are state and federal laws that cover, among other things, your rights to privacy, nondiscrimination, language interpretation and visitation, says Lois Richardson, vice president and legal counsel of the California Hospital Association.

But beyond legal protections, there are people you can talk to and steps you can take to improve your situation if you feel you’re not getting the care you deserve. And patients’ opinions do count.

“All hospitals increasingly are being scored and paid based on patient and family satisfaction scores,” says Rebecca Kirch, an executive vice president with the National Patient Advocate Foundation. “There is power in the people.”

That power starts with a few simple things.

First, make sure a spouse, child, family member or friend — anyone concerned for your well-being — can spend time with you in the hospital and be your advocate. You cannot do it by yourself while you’re in pain, medicated and not thinking clearly.

“It’s having someone else in your court, someone who can check in and make sure your questions are being answered,” says Dr. Rebecca Sudore, a geriatrician and palliative care physician at the University of California-San Francisco.

Before you or your advocate speaks to your nurse or doctor, write down your questions. Keep track of your glasses, hearing aids and dentures — the personal belongings that most often go missing in hospitals, Sudore says.

“How can someone speak up for themselves if they can’t see someone? Or can’t hear?” she asks.

When the time comes to ask questions — or express frustration — don’t be afraid to speak up. You have every right, even though it can feel intimidating to question your doctors or complain about your nurses.

“You can say, ‘No, I don’t want to go for that test. I want to speak to my daughter first,’” Bay says.

If you’re getting jostled out of sleep for a blood draw or blood pressure check in the middle of the night, ask your doctor the next day if it’s really necessary. Often, it can wait till early morning, says Julianne Morath, president and CEO of the Hospital Quality Institute.

“It’s up to us to put our own humanity back into decisions,” Sudore says.

But here’s where speaking up can get thorny.

Let’s say you don’t feel you’re getting adequate care or you’re unhappy with how you’re being treated. You can start with your nurse, but if that’s uncomfortable — perhaps because that nurse is the source of the problem — approach the charge nurse, who manages the staff in your unit.

You can also ask to talk to a hospital-based social worker, who can intercede or help you figure out who to talk to, Kirch says.

If that doesn’t help, take your complaints to the next level.

Every hospital that participates in the Medicare program — which is most — must have an ombudsman or patient rights advocate, Richardson says. My mom and I eventually complained to the patient rights advocate. It helped, and we wish we had done it sooner.

If you can’t go to the patient rights advocate yourself, “you can call them or ask your nurse to call them and have them come up to your room,” Richardson says. Hospitals must acknowledge patient complaints immediately, she says, and must respond in writing once they are resolved.

As part of this process, no matter whom you talk to, there are some phrases that can spur quick action, Kirch explains. One is “This doesn’t feel like quality care to me.” Another is “I see my loved one suffering.”

If you have a serious illness and you’re suffering from symptoms that aren’t being managed correctly, you can also request a consultation with a palliative care team. Palliative care isn’t only about end-of-life issues, it’s about quality of life, Kirch says.

Most large hospitals have a multidisciplinary team of doctors, nurses, social workers, chaplains and others who can provide added support on top of the medical treatment you’re receiving, especially if you’re getting shuffled among medical specialties.

“They can help tremendously to fill in the blanks. … It can be pain management. It can be spiritual or psychological distress,” Kirch says. “The palliative care team treats the person beyond the disease.”

If you have done all that and still have concerns, Kirch’s organization has case managers who provide free, one-on-one support for patients. Call 800-532-5274 for more information or visit www.patientadvocate.org/help.php.

To be clear, I’m not suggesting you complain about every little thing. Be realistic. For instance, a hospital doctor may see up to 30 patients a day. So you might have to wait for your page to be answered unless you have a serious, potentially life-threatening problem, Sudore says.

“It may not be that you’re being ignored. It might be that someone has to figure out the competing priorities,” she says.

And don’t forget that your caregivers are human too, Morath advises. “They get tired, they get stressed,” she says. “Very often, just letting them know you’re not getting what you need and asking for their help … is a very powerful act.”

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

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California Healthline Cost and Quality

Taking A Page From Pharma’s Playbook To Fight The Opioid Crisis

https://californiahealthline.files.wordpress.com/2017/11/unsellingopioidsbartolone.mp3

Dr. Mary Meengs remembers the days, a couple of decades ago, when pharmaceutical salespeople would drop into her family practice in Chicago, eager to catch a moment between patients so they could pitch her a new drug.

Now living in Humboldt County, Calif., Meengs is taking a page from the pharmaceutical industry’s playbook with an opposite goal in mind: to reduce the use of prescription painkillers.

Meengs, medical director at the Humboldt Independent Practice Association, is one of 10 California doctors and pharmacists funded by Obama-era federal grants to persuade medical colleagues in Northern California to help curb opioid addiction by altering their prescribing habits.

She committed this past summer to a two-year project consisting of occasional visits to medical providers in California’s most rural areas, where opioid deaths and prescribing rates are high.

“I view it as peer education,” Meengs said. “They don’t have to attend a lecture half an hour away. I’m doing it at [their] convenience.”

This one-on-one, personalized medical education is called “academic detailing” — lifted from the term “pharmaceutical detailing” used by industry salespeople.

Detailing is “like fighting fire with fire,” said Dr. Jerry Avorn, a Harvard Medical School professor who helped develop the concept 38 years ago. “There is some poetic justice in the fact that these programs are using the same kind of marketing approach to disseminate helpful evidence-based information as some [drug] companies were using … to disseminate less helpful and occasionally distorted information.”

Recent lawsuits have alleged that drug companies pushed painkillers too aggressively, laying the groundwork for widespread opioid addiction.

Avorn noted that detailing has also been used to persuade doctors to cut back on unnecessary antibiotics and to discourage the use of expensive Alzheimer’s disease medications that have side effects.

Kaiser Permanente, a large medical system that operates in California, as well as seven other states and Washington, D.C., has used the approach to change the opioid-prescribing methods of its doctors since at least 2013. (Kaiser Health News is not affiliated with Kaiser Permanente.)

In California, detailing is just one of the ways in which state health officials are attempting to curtail opioid addiction. The state is also expanding access to medication-assisted addiction treatment under a different, $90 million grant through the federal 21st Century Cures Act.

The total budget for the detailing project in California is less than $2 million. The state’s Department of Public Health oversees it, but the money comes from the federal Centers for Disease Control and Prevention through a program called “Prevention for States,” which provides funding for 29 states to help combat prescription drug overdoses.

The California doctors and pharmacists who conduct the detailing conversations are focusing on their peers in the three counties hardest hit by opioid addiction: Lake, Shasta and Humboldt.

They arrive armed with binders full of facts and figures from the CDC to help inform their fellow providers about easing patients off prescription painkillers, treating addiction with medication and writing more prescriptions for naloxone, a drug that reverses the toxic effects of an overdose.

“Academic detailing is a sales pitch, an evidence-based … sales pitch,” said Dr. Phillip Coffin, director of substance-use research at San Francisco’s Department of Public Health — the agency hired by the state to train the detailers.

In an earlier effort, Coffin said, his department conducted detailing sessions with 40 San Francisco doctors, who have since increased their prescriptions of naloxone elevenfold.

“One-on-one time with the providers, even if it was just three or four minutes, was hugely beneficial,” Coffin said. He noted that the discussions usually focused on specific patients, which is “way more helpful” than talking generally about prescription practices.

Meengs and her fellow detailers hope to make a dent in the magnitude of addiction in sparsely populated Humboldt County, where the opioid death rate was the second-highest in California last year — almost five times the statewide average. Thirty-three people died of opioid overdoses in Humboldt last year.

One recent afternoon, Meengs paid a visit during the lunch hour to Fortuna Family Medical Group in Fortuna, a town of about 12,000 people in Humboldt County.

“Anybody here ever known somebody, a patient, who passed away from an overdose?” Meengs asked the group — a physician, two nurses and a physician assistant — who gathered around her in the waiting room, which they had temporarily closed to patients.

“I think we all do,” replied the physician, Dr. Ruben Brinckhaus.

Brinckhaus said about half the patients at the practice have a prescription for an opioid, anti-anxiety drug or other controlled substance. Some of them had been introduced to the drugs years ago by other prescribers.

Dr. Ruben Brinckhaus says his small family practice in Fortuna, Calif., has been trying to wean patients off opiates. (Pauline Bartolone/California Healthline)

Meengs’ main goal was to discuss ways in which the Fortuna group could wean its patients off opioids. But she was not there to scold or lecture them. She asked the providers what their challenges were, so she could help them overcome them.

Meengs will keep making office calls until August 2019 in the hope that changes in the prescribing behavior of doctors will eventually help tame the addiction crisis.

“It’s a big ship to turn around,” said Meengs. “It takes time.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: California Healthline, Health Industry, Mental Health, Public Health

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Think Like a Doctor: The Boy With Nighttime Fevers Solved!

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Credit Andreas Samuelsson

On Thursday we asked Well readers to take on the case of a 7-year-old boy who’d been having fevers and drenching sweats nightly for over a month. More than 300 of you wrote in, and although 20 of you came up with the right diagnosis, only three of you figured out both the diagnosis and the test needed to confirm it.

The correct diagnosis is…

Coccidioidomycosis, or valley fever.

The diagnosis was made based on a lymph node biopsy.

The first reader to suggest this diagnosis and the test was Dr. Malkhaz Jalagonia, an internist from Zugdidi, in the Republic of Georgia. He says he’s never seen a case like this, but he’s fascinated by zebras and so recognized the disease immediately. Well done, Dr. Jalagonia!

One of the reasons I chose this case was that, although this diagnosis is rare in life, it was the most frequently suggested diagnosis in my last column – the one about the middle-aged man with a cough for over a year. I thought it would be fun to show what valley fever really looks like. Hope you did too.

The Diagnosis

Coccidioidomycosis is a lung infection usually caused by inhaling the spores of a tiny fungus called coccidioides. This organism grows as a mold, a few inches below the surface of the soil in deserts in parts of the southwestern United States, Mexico and other countries of Central America.

In dry conditions, the fungus becomes fragile and is easily broken up into tiny single-celled spores that can be sent airborne with even the slightest disturbance. And once these single cells are aloft they can remain suspended there for prolonged periods of time.

Infection is usually acquired by inhaling the spores. Once lodged in the lung, the organism begins to reproduce almost immediately. The time course between exposure and disease depends on the inhaled dose and the patient’s immune system.

Symptoms, or No Symptoms

Disease severity varies considerably. Nearly half of those who breathe in these spores have no symptoms, or symptoms are so mild they never visit the doctor’s office.

More severe infection usually takes the form of a slowly progressive pneumonia known as coccidioidomycosis, or valley fever. This illness is characterized by a cough, fevers, chest pain, fatigue and sometimes joint pain. Indeed, because of the prominent joint pain, in some cases — though not this one — the disease is also known as desert rheumatism.

Rashes are also seen in many patients. Those who get a rash seem to have a more benign course of illness. The thinking is that the skin symptoms are the result of an aggressive immune response in the host to the pathogen.

Symptoms can last for months, and in many cases they resolve without treatment. But in some cases they get worse.

Hard to Diagnose

Those who seek medical attention are often not diagnosed — or not diagnosed quickly — because the symptoms of valley fever are not very specific, and few of the tests that doctors usually order have features that are unusual enough to suggest the diagnosis.

Chest X-rays are often normal. Blood tests may be normal as well, though some patients, like this child, have an unusually high number of a type of white blood cell known as eosinophils. These cells are usually seen in allergic responses or with infections due to parasites.

The most important clue to the possibility of this infection is travel to one of the areas where the fungus lives. In the United States, valley fever is endemic primarily in Arizona and southern California, as well as parts of southern New Mexico and West Texas. Indeed, the name valley fever is a shorter and more general term for an earlier name, San Joaquin Valley fever, because it was so common in that part of California.

A Dramatic Rise

There has been a significant increase in the number of cases of coccidioidomycosis in the past 15 years, with nearly 10 times as many in areas where the fungus is found. Development in areas where the fungus is endemic is thought to be the primary cause. Better diagnostic testing may also play a role.

While this infection may cause only a minor illness in many, there are some – like this child – for whom the disease can spread beyond the lungs into the rest of the body. Disseminated coccidioidomycosis is usually seen in those with some problem with the immune system – an underlying disorder such as H.I.V., for example, or because someone is taking immune suppressing medications such as prednisone.

Once out of the lungs, the bugs can go anywhere in the body, though they seem to prefer joints, skin or bones. Those with disseminated disease have to be treated for a long time – often up to a year, or occasionally for life.

How the Diagnosis Was Made

The little boy had been sick for nearly a month, and his parents were getting quite worried. He was pale, thin and really, really tired.

With their pediatrician’s encouragement, they had gone on a long planned, much anticipated vacation to the mountains of Colorado. But the child wasn’t getting better, and so his mother took him to yet another doctor – this one in a walk-in clinic.

The results of some simple blood tests done at that visit worried the doctor, who suggested that the boy be taken to a hematologist, a specialist in diseases and cancers of the blood.

Now the parents were terrified. The mother faxed copies of the lab results to her brother, a researcher in immunology. He wasn’t a physician but showed the results to friends who were. They agreed with the doctor at the walk-in clinic: The boy needed to be seen by a hematologist.

A Series of Specialists

The next morning the family headed home to Minneapolis. They took the boy to his regular pediatrician, who sent them to a hematologist. It wasn’t cancer, that specialist told them. Maybe some kind of severe food allergy, he suggested, and referred them to a gastroenterologist.

Not a GI thing, that specialist told them, and he referred the now nearly frantic family to an infectious disease specialist and a rheumatologist.

Nearly 10 days after getting the alarming blood test results, the couple and their child found themselves in the office of Dr. Bazak Sharon, a specialist in infectious diseases in adults and children at the University of Minnesota Masonic Children’s Hospital. After introducing himself, Dr. Sharon settled down to get a detailed history of the boy and the family.

A Desert Visit, but Other Possibilities

When Dr. Sharon heard that the family had spent a week at a ranch in the desert of Arizona, he immediately thought of coccidioidomycosis. The fungus isn’t found in Minnesota or Colorado – which is probably why other doctors hadn’t considered it. But it is all over the part of Arizona where they’d visited.

Still, there were other possibilities that had to be ruled out, including some types of cancer. After Dr. Sharon examined the boy, he sent the family to the lab for a chest X-ray and some blood tests.

The results of those tests were concerning. The child was getting worse. Dr. Sharon wasn’t going to be back in clinic for a week, and he was certain the child needed to be seen and diagnosed well before then. He called a friend and colleague who was taking care of patients in the hospital, Dr. Abraham Jacob, and asked if he would admit the child and coordinate the needed diagnostic workup for the boy.

First Some Answers, Then More Questions

Once in the hospital, the child had a chest CT scan. The results were frightening. The lymph nodes that surround the trachea, the tube that carries inspired air to the lungs, were hugely enlarged. They were so big that the trachea was almost completely blocked. The opening at one point was just two millimeters wide – basically the dimensions of a cocktail straw. Any worsening of his disease might cause the tube to close completely, making breathing impossible.

A pediatric surgeon was brought in immediately. The enlarged lymph nodes had to be removed. First in order to protect the child’s airways. And second because those nodes would reveal what the little boy had.

But trying to do surgery on a 7-year-old boy’s neck was complicated. Although the surgeon could easily feel the enlarged gland in his neck, it was close to many vital blood vessels, nerves and organs. The child had to lie perfectly still, and with most children that could only be guaranteed if they were under anesthesia.

Risky Surgery

When the anesthesiologist saw the CT scan, the doctors’ concern grew. They could put the child to sleep, but if anything went wrong during surgery and they had to put a tube down his throat into his lungs, they weren’t sure it would be able to fit.

The trachea was so small, there was no guarantee they could get the tube into place. In order to do this safely, they said they needed to use a technique known as ECMO, or extracorporeal membrane oxygenation – basically a machine that allows them to oxygenate blood without sending it to the lungs.

Rather than subject the child to this risky procedure, Dr. Jacob and the surgeon decided to just take a piece of the lymph node out in order to make the diagnosis. Treatment of whatever the boy had would bring the size of the lymph node down.

Don’t Make a Move

When the boy was brought to the procedure room, the surgeon explained that he was going to put numbing medicine all around the bump in the boy’s neck and take out a piece of it. The child listened calmly and agreed.

He wasn’t to move at all, the surgeon explained. The child nodded solemnly. He understood. The boy was remarkably mature and so brave throughout the entire process of anesthetizing the region that the surgeon thought he might be able to continue and get the entire node out.

He paused in his surgery and consulted the parents. Would they allow him to try this? Their son was doing so well he was sure he could get it. They agreed, and the surgeon returned to his task. The lymph node came out without difficulty.

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Credit

It was sent to the lab and the answer came back almost immediately. The swollen tissue was filled with the tiny coccidioides. You can see a picture of these little critters here.

A Year of Medicine

The boy was started on an intravenous medicine for fungal infections. Then after a week it was changed to one he could take by mouth.

Because the infection had spread beyond the lungs, the child will have to take this medication for a year. After starting the medication, the child began to look a little better. Slowly he was less tired. Slowly he started to eat the way he used to.

It was a long road to the diagnosis, and an even longer road to cure, but at least they were on the right one.

A Perfect Storm?

The mother called the ranch in Arizona where they stayed to let them know what had happened.
The owner told them that their son was not the only person visiting then who got sick. At least one other guest, there at the same time, had come down with the disease.

Apparently the conditions for spread were perfect. Their stay had started off with some rain, followed by heat and some brisk wind. The moisture helped the fungus grow; the heat dried it out so that it could become easily airborne and inhaled when lifted by the wind.

Although the family has loved their visits to this ranch – this was their second year – the child’s mother tells me that she’s not sure she’ll be going back, at least for a couple of years. Most people exposed to valley fever become immune forever, but because her little boy was so very sick, she’s planning to wait a while before they return.

Think Like a Doctor: The Boy With Nighttime Fevers

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Credit

The challenge: A healthy 7-year-old boy suddenly starts having fevers and night sweats. Can you figure out why?

Every month, the Diagnosis column of The New York Times Magazine asks Well readers to sift through a difficult medical case and solve a diagnostic riddle. This month we present the case of a boy who has fevers topping 102 degrees every night for over a month. His parents sought help from nearly a dozen doctors in two states before a diagnosis was made.

Below I’ve given you the information that was available to the doctors who figured out the cause of the boy’s fevers. It’s up to you to use this information to put his story together for yourself.

As usual, the first person to crack the case gets a copy of my book, “Every Patient Tells a Story,” and, of course, that fabulous feeling you get when you solve a really tough puzzle.

The Patient’s Story

“I think you need to take him back home.” Her brother’s voice was calm, but she could hear an undertone of anxiety even over the poor cellphone reception that was all she could get from rural Colorado. “He needs to see a hematologist. It could be a virus, but it could also be something else.” He didn’t say it, but she knew what he was thinking: cancer.

Her son, just 7 years old and always a little delicate, had been sick for nearly a month. He was fine during the day, but every night he’d spike a fever of 102 or 103.

Even before they’d come to the mountains for a much needed vacation, she’d taken him to see his pediatrician at home in Minneapolis several times. At each visit, the doctor or one of his partners had looked the boy over closely, and each time he’d seemed fine.

It was probably viral, she was told, time after time. But he seemed to be having one viral infection after another.

A Vacation Cut Short

The day before they left for Colorado, the boy’s father took him to the doctor’s office one more time.

Maybe it wasn’t viral, the pediatrician acknowledged, and prescribed a “Z-pak” — a five-day course of azithromycin. Don’t cancel the trip, the doctor reassured him. He’ll get better.

But he hadn’t. While on vacation, his mother took him to a walk-in clinic, where they’d checked his blood. A worried looking doctor told her that he didn’t know what was wrong with her boy. He should probably see a cancer specialist.

Now she was really worried. There weren’t any specialists anywhere near the bucolic town where they were staying. That’s when she’d sent the test results to her brother, a researcher in immunology. He wasn’t a doctor, but he passed the results to friends who were, and they were worried, too.

Thin and Pale

The family headed home right away, but the 4th of July was coming. They couldn’t get in to see a hematologist until Tuesday.

By now the boy was starting to look sick. He was pale and had dark circles under his eyes. Small for his age — consistently in the fifth percentile for height and weight — he now looked even smaller, thinner. He was a quiet child, always had been. Thoughtful and comfortable in the company of adults, as so many only children are. Even now he never complained.

Nothing hurt. He was simply tired. His fevers started coming a little earlier, peaking a little higher. His mother noticed a cough and wheezing sometimes. Always a picky eater, with these intermittent fevers, very few foods seemed appealing. She tried to hide the terror she felt when he seemed to be fading as she watched.

A Long Line of Specialists

The hematologist examined the boy and sent off more blood. Definitely not cancer, he said. He suggested seeing a gastroenterologist.

The gastroenterologist got an M.R.I. of the child’s digestive system. Nothing there. He noticed the boy’s wheezing and gave him an inhaler, then referred mother and child to a rheumatologist and an infectious disease specialist.

It seemed to the parents that this had to be an infection, but the earliest they could get in to see the infectious disease doctor was the following week. For the boy’s mother, the delay now seemed intolerable.

It had been five weeks since the fevers first started. In that time, the boy had lost nearly 10 pounds. They’d seen eight doctors in two states. They’d all been very nice, thorough, thoughtful, but had no answers.

By the weekend she was desperate. The boy needed to be in the hospital. Couldn’t they see how sick he was? She couldn’t wait for the specialist. She took him to the emergency room of the big university hospital.

The E.R. doctors, like all the doctors they’d seen so far, were kind and thoughtful, and so gentle with her delicate son. But like all the other doctors, they had no answers. They prescribed another inhaler for the boy’s wheezing, since the first hadn’t helped. They also urged her to see the infectious disease specialist. His appointment was just a couple of days away.

TB or not TB?

The boy was sitting quietly between his parents watching a video on his tablet when Dr. Bazak Sharon and the infectious disease fellow he was training entered the exam room. Dr. Sharon’s first thought was that the child looked as if he had tuberculosis.

He’d seen a lot of TB in this clinic, but it was usually among immigrant families who had traveled to Minneapolis from countries where the disease was common. Like this boy, kids with TB were usually thin, sickly looking, pale and quiet. But based on what his fellow told him, the child had no exposures that would put him at risk for this disease. He’d only been out of the country once – to Canada. He’d visited the beaches of South Carolina and the deserts of Arizona, and most recently the mountains of Colorado. But TB was rare in all these locales.

Dr. Sharon introduced himself to the child, who looked up immediately and smiled. How do you feel, he asked the boy? His temperature had been recorded at 103 degrees. I feel good, he’d answered pleasantly. Does anything hurt? No.

His heart was beating rapidly – nearly 140 beats per minute, but that was probably due to the fever. There were several enlarged lymph nodes in the child’s neck and his groin, though none under his arms. Otherwise his exam was unremarkable.

Getting Worse

Dr. Sharon had reviewed the blood tests that had already been done but wanted to see if anything had changed. And given that the only localized complaint was cough and wheezing, he wanted to get another chest X-ray.

Reviewing those studies that night, Dr. Sharon saw that the boy was slowly getting worse. He saw patients at that clinic only once a week and was reluctant to wait that long before having him seen again. He thought they needed an answer much sooner than that.

You can see the note from Dr. Sharon and his fellow here.

Dr. Sharon’s Note

The note from the patient’s visit to the hospital.

To the Hospital

Dr. Sharon called the family the next morning. He’d reached out to one of his friends and colleagues, Dr. Abraham Jacob, who could see them. They should go to the University of Minnesota Medical Center Fairview, where Dr. Jacob would orchestrate a thorough workup. That would be the fastest way to get an answer.

Based on the assessment by Dr. Jacob and his resident and the recommendations from Dr. Sharon, the team reached out to specialists in hematology-oncology and in rheumatology. And since his chest X-ray was abnormal and he had enlarged lymph nodes, they wanted to get a CT scan as well.

You can see the note from Dr. Jacob and his resident here.

Dr. Jacob’s Notes

Here are the notes from the pediatrics department.

Breathing Through a Straw

It was the results of the CT scan that really got things moving. It was the middle of the day when the resident was paged by the radiologist. The pictures showed that the lymph nodes in the boy’s chest were so swollen that they were pressing on the trachea – the breathing tube – so that it was almost completely cut off. Essentially he was breathing through the equivalent of a cocktail straw.

Any additional swelling could cut off the boy’s breath completely. You can see an image from the CT scan here.

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This CT scan shows the patient’s chest. In a child of this age, the trachea is normally eight to 12 millimeters wide. Much of the gray tissue surrounding the trachea and esophagus is swollen lymph nodes.

This CT scan shows the patient’s chest. In a child of this age, the trachea is normally eight to 12 millimeters wide. Much of the gray tissue surrounding the trachea and esophagus is swollen lymph nodes.Credit

A normal trachea in a child this age is four to six times the size seen in the scan. The image added even more pressure to make a diagnosis and treat the child before he got sicker.

Solving the Mystery

A diagnosis was made within the next 24 hours. Can you figure out what the boy had, and how the diagnosis was made?

The first person to offer the correct answers to these two questions will get a copy of my book and that sense of triumph that comes from nailing the right diagnosis when it really matters.

Rules and Regulations: Post your questions and diagnosis in the comments section below. The winner will be contacted. Reader comments may also appear in a coming issue of The New York Times Magazine.

Just a Regular Doctor

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Credit iStock

“What’s your specialty?” That’s the question people always ask, as soon as they learn that you are a doctor.

My specialty? This question continually flummoxes me. This is the moment that I experience a brief surge of envy toward my cardiology and dermatology colleagues who have simple one-word answers to this question that any lay person can understand.

But what do internists say? What is our specialty?

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Danielle Ofri, M.D.

Danielle Ofri, M.D.Credit Joon Park

I sometimes say, “general internal medicine.” But that’s a mouthful. Plus many people have no idea what general internal medicine actually means.

I usually end up saying that I’m just a regular doctor, but it always feels deflating to have to add that “just.”

The American College of Physicians, the professional group for internal medicine, started an ad campaign several years ago to address the confusion. They came up with the slogan of internists as “doctors for adults,” wanting us to credibly sound like specialists, people with more training than the old-fashioned G.P.s. But it just didn’t catch on. I don’t fault the A.C.P. or its Madison Avenue colleagues who came up with this lusterless campaign; there’s just not a lot of pithy material to work with.

Internists, along with the others in the primary care field — family physicians, pediatricians, gynecologists — make up the bulwark of the medical system, though nothing we do or say or represent is especially snappy. No one is rushing to make an edgy cable TV series about adjusting blood pressure medications or treating constipation.

But the need is surely there. Anyone who’s tried to get an appointment with his or her doctor already knows about the primary-care crunch. The Affordable Care Act has highlighted the need for more primary care doctors, with the shortage only likely to grow more acute with a growing and aging population.

In most other countries, the vast majority of physicians are primary care doctors, in recognition that they deliver the vast majority of health care. It is only in the United States that the free market for higher-paid fields results in the number of specialists actually surpassing that of primary care doctors.

We all know the stats — primary care doctors get paid less than specialists, have more administrative headaches, more paperwork, and are generally viewed as lower on the totem pole. Reputation always has it that the smartest medical students go into the specialties; the generalist fields get everyone else who couldn’t make up their mind or who didn’t want to compete in the big leagues.

Dr. Wayne Riley, the president of the American College of Physicians, strongly disputes this characterization. He notes the wisdom acquired by physicians who are required to take both the long view and the wider view of medicine. “I proudly tell people that my specialty is internal medicine.” And if people are still confused, he humorously describes an internist as, “Like television’s Dr. House, but without the bad manners or ethical issues.”

The stereotype of specialists handling the more complex and intellectually challenging cases makes many generalists fume. Generalists observe that specialists get the “simplicity” of handling very narrow slivers of medicine. It’s much easier to be an expert when you only have a handful of diseases to worry about. And any issue that a specialist doesn’t want to deal with can be permissibly kicked back to the generalist.

The generalist, however, gets no dispensation. Every issue that the patient raises must be addressed. Every symptom from any organ has to be acknowledged. Plus, every medication prescribed by every specialist must be accounted for. Every competing interest between the many medical cooks in today’s fragmented health care environment must be integrated.

A recent study regarding patients with diabetes illustrates this reality. In a review of more than 4,500 patients with diabetes, 80 percent of visits to specialists involved only one diagnosis. However, only 45 percent of visits to generalists involved a single diagnosis. Of patients with four or more diagnoses, 90 percent fell to the generalists.

Specialists also get the added ease of pre-screening. A patient referred to a gastroenterologist is generally known to have a GI issue. A patient sent to a cardiologist has some type of heart condition. But the patient who walks into a generalist’s office will often just report pain somewhere in the middle of the body. The generalist has to figure out if the source of the pain is cardiac or pulmonary or gastric or muscular or inflammatory or infectious or hematologic or autoimmune or psychosomatic — a tall order that is somehow considered less intellectually rigorous, and less worthy of reimbursement, than specialty care.

To me, primary care and specialty care are equally demanding. They perhaps represent different types of intellectual challenges, but there’s no reason for one to be thought of as more worthy of respect (or pay).

Primary care doctors, the generalists, won’t be likely to achieve parity in pay or respect until the economics of American medicine changes drastically to reflect more realistically the needs of our patients. Right now, the system values procedures far more than talking to the patient, and so generalists — who do far fewer procedures — continue to rank at the bottom.

But generalists can take heart in the fact that they are what people usually have in mind when they say that they need a doctor. So now when people ask what my specialty is, I say that I’m just a regular doctor. Though I try to remember to leave out the “just.”


Danielle Ofri’s newest book is What Doctors Feel: How Emotions Affect the Practice of Medicine. She is a physician at Bellevue Hospital and an associate professor of medicine at the New York University School of Medicine, as well as editor in chief of the Bellevue Literary Review. She spoke on Deconstructing Our Perception of Perfection at TEDMED.

Food, a Place to Sleep and Other Basic Patient Needs

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Credit Earl Wilson/The New York Times

“Doc,” my patient said, his voice a mix of amusement and irritation. “I ain’t got food to eat or a place to sleep. Took me two hours and three buses to get here. And you’re tellin’ me about some numbers?”

He had a point. Though, in my defense, these numbers — his cholesterol and blood pressure — were important ones.

As I tried to persuade him of their relevance, I thought of another number, his ZIP code — or lack of one, since he lived on the street — and how that was a far more important factor for how long he might live than his cholesterol.

What’s remarkable about our conversation isn’t that it happened, but that it doesn’t happen enough. Many of my patients are not forthcoming about their challenges, and when I probe, I’m often surprised by how many struggle with basic needs like housing, food and transportation.

I recently discussed starting insulin with a patient to control his diabetes. He hesitated — his concern not the syringes needed to inject it, but rather not having a refrigerator to store it. Another patient recently called to cancel her appointment. She was moving into a new apartment — again. Her son’s asthma had flared up, and she thought the mold and cockroaches in their current home were making it worse.

These situations highlight what we’ve known for decades: that patients’ social and economic circumstances powerfully influence their health and well-being. But until recently there’s been relatively little effort to systematically address these factors.

The Center for Medicare and Medicaid Innovation, a government organization established by the Affordable Care Act to test new ways to deliver and pay for health care, is trying to change that. It recently announced a pilot program to help health systems close gaps between medical care and social services in their communities. The program, known as Accountable Health Communities, will invest $157 million over five years to study whether helping patients with social needs in five key areas — housing, food, utilities, transportation and interpersonal safety — can improve health and reduce medical costs.

“Clearly we’re not the first to understand that social factors are important,” said Dr. Darshak Sanghavi, the innovation center’s director of preventive and population health care models. “But these efforts have been fragmented. They haven’t been studied in a way that can be nationally scaled.” As the world’s largest purchaser of health care services, the Centers for Medicare and Medicaid Services can help address that, he said.

The Accountable Health Communities program will award grants to 44 organizations around the country to build partnerships among state Medicaid agencies, health systems and community service providers to identify which strategies are most effective for linking patients to the services they need.

There’s good evidence that dedicated attention to social support can improve health and cut costs. Research suggests nutrition assistance for low-income women and children reduces the risk of low birth weight, infant mortality and developmental problems — at a cost that’s more than fully offset by lower Medicaid spending. Other work suggests providing elderly patients with home-delivered meals can help them live independently and prevent expensive nursing home stays. Research also shows that providing housing for low-income and homeless people can substantially reduce medical costs. A housing initiative in Oregon, for example, decreased Medicaid spending by 55 percent for the newly housed; a study of a similar program in Los Angeles found that every $1 spent on housing led to $6 saved on medical costs.

And local efforts around the country can serve as models for change.

Hennepin Health in Minnesota, for example, is an organization that serves low-income patients, and emerged as a partnership between local social service, public health and medical leaders. These groups share data and funding to ensure patients have access to services like housing, utilities, job training and behavioral and substance abuse counseling. The program’s efforts have lowered emergency department use, reduced the need for hospitalizations, improved chronic disease care — and saved money. Other innovative organizations, like the Camden Coalition in New Jersey and Health Leads in several metropolitan areas, have likewise recognized the challenges vulnerable patients face outside the hospital, and tackled them in inspiring ways.

But we haven’t yet done enough to collect, examine and scale these insights. There’s been no concerted national effort to ease the social problems that drive poor health, and consequently, little financial incentive for medical practitioners to collaborate with social service providers. Until now.

“I think what’s most important is the signal we’re sending,” Dr. Sanghavi said of the Accountable Health Communities initiative. “We recognize that hundreds, potentially thousands, of communities have these needs. We can’t meet them all right now. But this sends a broader signal to other innovators out there — be they private, public or philanthropic: Social determinants are important. We want to learn from their efforts. We want to spark that flame.”

Dhruv Khullar, M.D., M.P.P., is a resident physician at Massachusetts General Hospital and Harvard Medical School. Follow him on Twitter: @DhruvKhullar.

Doctors Should Listen to Patient Instincts

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When a patient complains that he or she doesn’t feel well, doctors should pay attention.

That’s the finding of a new study that suggests that how patients say they feel may be a better predictor of health than objective measures like a blood test. The study, published in Psychoneuroendocrinology, used data from 1,500 people who took part in the Texas City Stress and Health Study, which tracked the stress and health levels of people living near Houston.

The survey included self-assessments from a 36-item questionnaire as well as blood samples, which were analyzed for markers of inflammation and the activity of latent herpes viruses. (The viruses were benign and not the type associated with sexually transmitted disease or cold sores.) Inflammation and viral activity are general markers of immune system health, but they don’t typically cause any obvious symptoms or show up in traditional blood tests.

The study found that when people said they felt poorly, they had high virus and inflammation levels. People who reported feeling well had low virus and inflammation levels.

“I think the take-home message is that self-reported health matters,” said Christopher P. Fagundes, an assistant psychology professor at Rice University and a co-author of the study. “Physicians should pay close to attention to their patients. There are likely biological mechanisms underlying why they feel their health is poor.”

The Doctor-Patient Relationship Is Alive and Well

It’s 2:20 p.m. and Ms. M. is precisely on time for her appointment. She’s brought her hand-printed list of questions, her sack of medications that need renewal, her mordant observations about her newest home attendant, and a box of chocolates that she will press upon me no matter how hard I protest. At 89, her medical conditions don’t have easy cures and the setbacks from aging are often implacable. Yet we always manage to find something optimistic to work on, even if modest in scope.

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Danielle Ofri, M.D.

Danielle Ofri, M.D.Credit Joon Park

Ms. M. requires the assistance of her daughter to make the hour-plus trip by public transportation. Over the 10 years we’ve worked together, I’ve periodically suggested she might consider a clinic closer to home to avoid the arduous travel. She sniffs sharply at the affront and then barrels into the meat of our visit.

It’s been a rocky decade for medicine — the Affordable Care Act, the migration to electronic medical records, record-breaking medication prices, and the shift from traditional doctor-run practices to mammoth corporate-run organizations have left us all reeling. Physician anger at overwhelming administrative demands and patient frustration at the impossibility of navigating the system have frayed the fortitude of everyone.

Medicine is unquestionably harder than it was 10 years ago. Many more doctors I know talk about quitting (an option that is not equally available to patients). However, there’s been no mass exodus of doctors. We doctors grumble loudly — often with good cause — but we aren’t quitting in droves, mainly because of patients like Ms. M.

A new study by the Physicians Foundation of more than 1,500 patients found that more than 90 percent of patients were satisfied with their relationship with their primary care doctor. They felt that their doctors were respectful of them, listened well, explained well, and had a good understanding of their medical history.

On the surface, this seems to contradict the dyspeptic view of medicine we hear about in the media. But it actually reflects the larger truth that most patient rancor is directed not toward the doctor but to the bureaucratic aspects of medicine — the cost, the hassle, the opaqueness. On the whole, patients are happy with the medical care they receive from their primary care doctors — once they’ve slogged through the seven circles of pre-authorization purgatory to get there.

The same is true for doctors. What doctors hate most is everything that surrounds medicine, but not medicine itself. Peel away the administrative migraines and most doctors relish the practice of medicine.

It’s heartening to see that the doctor-patient relationship is surviving this latest round of upheaval. For primary care doctors in particular, whose daily work life has been pummeled with exceptional relentlessness, this latest survey is immensely validating.

So maybe it’s not surprising that it can feel as if morale is both exceptionally high and exceptionally low at the same time. Just this month, a new set of requirements was piled on to our clinic’s electronic medical record system, and a dreary sigh of resignation echoed from one doctor to the next. With all the computerized busywork that a medical visit requires these days, there’s hardly time to call in our patients from the waiting room.

On the other hand, when we welcome our new students and interns — July is the starting month of the medical calendar — the enthusiasm for primary care is fervent. We all have patients, like Ms. M., who bring joy and fulfillment no matter how much inanity we have to lumber though in the electronic medical records system.

Nothing comes close to the experience of making another human being feel better, even a tiny bit. After months of trial and error, Ms. M. and I finally worked out a schedule of her diuretic pill such that she could go for a midday stroll without having to scramble for a nonexistent public bathroom. This isn’t the sort of high-tech medical wizardry that grabs headlines or stock prices, but it allows a formerly housebound patient to now keep tabs on her Brooklyn neighborhood.

The awe of discovering the human body, the honor of being trusted to give advice, the gratification of helping someone through a difficult illness, the intellectual stimulation of continually learning — these things never grow old.

And word seems to be getting out — applications to medical school are at an all-time high, and new medical schools are opening to meet the demand. (By comparison, law school applications continue to decline and business school applications remain flat.)

When I close the door to the exam room and it’s just the patient and me, with all the bureaucracy safely barricaded outside, the power of human connection becomes palpable. I can’t always solve my patients’ issues, but the opportunity to try cannot be underestimated.

We doctors shouldn’t be afraid to speak up about what’s wrong with medicine — and there is plenty that is wrong. But we also shouldn’t be afraid to speak up about what’s right. While the logistics of practicing medicine may feel like an ever-tightening thumbscrew, the doctor-patient relationship is alive and well, and the prognosis is excellent.

Danielle Ofri’s newest book is “What Doctors Feel: How Emotions Affect the Practice of Medicine.” She is a physician at Bellevue Hospital and an associate professor of medicine at N.Y.U. School of Medicine, as well as editor in chief of the Bellevue Literary Review. She spoke on Deconstructing Perfection at TEDMED.

Think Like a Doctor: A Cough That Won’t Stop

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Credit Andreas Samuelsson

The Challenge: A 43-year-old man starts to cough every time he takes a deep breath. Can you help him figure out why?

Every month, the Diagnosis column of The New York Times Magazine asks Well readers to try their hand at solving a medical mystery. Below you will find the story of a healthy middle-aged man who starts coughing and just can’t stop. He can’t exercise. He can’t laugh. Sometimes he can’t even talk without interrupting himself with deep, awful-sounding hacks.

Below I provide much of the information available to the doctors who examined him. It took 18 months before a doctor figured out what was wrong. Can you do it any faster? The first reader to offer the correct diagnosis will receive a signed copy of my book, “Every Patient Tells a Story,” and the satisfaction of solving a real-life case.

An Emergency 18 Months in the Making

“You should probably have that checked out in the E.R.,” the nurse suggested to the middle-aged man on the other end of the phone. “And sooner rather than later.” In the next few days? he asked. In the next few hours, the nurse replied.

The 43-year-old man hung up the phone more surprised than worried. He had been dealing with an annoying and persistent cough for a year and a half and none of the doctors or nurses he’d seen in that time seemed to think it was a big deal. Until now – since he started coughing up blood.

He called his wife to tell her what the nurse suggested. After work he was going to drive himself to the emergency room at the veterans’ hospital in downtown Denver. He could hear the relief in her voice when she asked if he wanted her to come with him. No, she had enough on her hands looking after their four children. He’d let her know what they said.

An Abnormal X-ray

In the E.R., the man’s complaint got him seen right away. His chest X-ray was normal, they told him. (The X-ray is shown here)

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Credit

But when they came back into his cubby wearing masks over their noses and mouths he suspected that the CT scan was not. The scan had shown some kind of hole in his lungs, the E.R. doctor told him. That’s why he was coughing up blood. One of the diseases that can cause those kinds of cavities was tuberculosis. Had he ever been exposed to TB? Not that he knew of. (The CT scan images are shown here.)

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Credit

Because TB was such a dangerous disease – and extremely contagious — they would have to find out if he had it. If he did, he would certainly need to be treated. And to make sure he didn’t infect anyone while he was being tested, he needed to be in a specialized room – a room where the air he breathed wouldn’t be breathed by anyone else. None of the hospital’s negative pressure rooms were available so they were going to transfer him to Presbyterian/St. Luke’s Medical Center, the big regional hospital just a couple of miles away. They had an available room and would be able to care for him.

You can read the patient’s history and physical from the E.R. here:

Admission Notes

The patient’s notes from the hospital.

The Patient’s Long Story

Dr. Karen Schmitz was the second-year resident assigned to care for the new guy sent over to be tested for TB. She could see the patient sitting up in bed talking on the phone as she secured the mask over her nose and mouth and entered the double-door room that would prevent any air-borne infectives from spreading. As she entered, the patient looked at her, smiled a warm smile, and held up a finger as if to say, “I’ll be with you in a minute.” As he finished up his phone call, the doctor looked at him carefully. He was a robust guy – youthful and healthy looking. He certainly didn’t look like any of the people she’d cared for with active TB. When he hung up, he apologized and the doctor introduced herself. She pulled up a chair and settled in. She knew from what she’d read in the chart that it was going to be a long story.

The bloody cough was pretty new, he told her. It started two weeks earlier. But the cough itself had been around for 18 months. He’d caught it a couple of summers ago, and it just never went away. At first he thought it was bronchitis – he’d had that a lot when he was a kid — but when it lasted for more than a couple of weeks, he went to see his primary care doctor. He’d never had a fever or any other sign of being sick. He had some runny nose and itchy eye symptoms that started weeks before the cough and so he and his doctors thought it was allergies. Or asthma. His doctor prescribed an antihistamine and later an inhaler. They fixed his runny nose, and eased up the chest tightness, but the hacking never slowed down.

He went to an ear, nose and throat specialist who scoped his nose and throat. Completely normal. He had a chest X-ray – also normal.

He saw a pulmonologist who, hearing that he had a little heartburn, started him on a powerful antacid medication. That pill completely fixed the heartburn but didn’t touch the cough.

That first year he’d seen three doctors in a half-dozen appointments, and had a scope, a chest X-ray and a slew of blood tests and still no one could tell him why he was coughing or how to make it stop. So he figured he’d just have to learn to live with it.

Not that he wanted that. Every time he took a deep breath he would cough. In the middle of telling a good story he’d have to stop to cough. Whenever he laughed, he coughed. Dozens of times a day, he coughed. He even had to give up exercising. Any time he exerted himself, even just a little, the cough would kick in with a shocking fierceness. Recently he’d tried riding his bike and just 15 minutes in he had to stop. Even though he was taking it easy, as soon as he started to breathe just a little harder than usual, he nearly keeled over. He had to get off his bike. He was doubled over with the ferocious hacking. Sweat and tears poured down his cheeks. He could hear the rasping sound of his breath between the deep jagged coughs. He wondered if he could even make it home. That was the last time he tried to exert himself. And that had been weeks earlier.

You can see the pulmonologist’s notes here:

Pulmonary Consult Note

The notes from the lung specialist.

The Doctor’s Visit

But eventually, he started to cough up blood. That happened the morning after he’d had another terrible blast of coughing. He’d gone with his wife and four children to Vail for Thanksgiving. As he was packing the car to come home he started coughing and felt as if it would never stop, as if he’d never be able to breathe again. But he recovered, until the next morning when he started to cough up blood. It scared him. And terrified his wife. When it didn’t get better after a couple of weeks, he’d decided to call the hospital, and the nurse on the phone sent him to the E.R.

Now, talking to Dr. Schmitz, he told her he never smoked and rarely drank. And even though it was legal, he never smoked pot either. He had been an officer in the Air Force and now was a real estate agent. He had spent a few months in Kuwait and another few in Saudi Arabia, but that was in the 1990s. He’d traveled a bit – mostly out west, but nothing recent. He took medicine for high cholesterol, the antihistamine and the antacid medicine, but that was it. His exam was unremarkable. Dr. Schmitz listened hard through her stethoscope as she placed it on his chest where she knew the hole in his lung was, but heard nothing abnormal.

She didn’t start him on antibiotics, because she didn’t yet know what she was treating, she told him. Tuberculosis seemed unlikely so she was going to test him for other infections as well. To make sure the team didn’t miss anything, they consulted an infectious diseases specialist and a pulmonologist.

You can see their notes here.

Infectious Disease Consult

Notes from the infectious disease specialist.

Dr. Schmitz checked on her patient throughout the day. He was always on the phone, his computer open, hard at work. So far they were doing nothing for the guy – just watching and waiting for answers. When the TB test came back negative, Dr. Schmitz thought he might very well be the healthiest patient in the entire hospital. Was she right? The patient got his diagnosis the very next day.

Solve the Mystery

What do you think is making this patient cough?

Post your answers in the comment section. I’ll tell you the answer tomorrow.

At the End of Life, What Would Doctors Do?

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Credit Stuart Bradford

Americans have long been chided as the only people on earth who believe death is optional. But the quip is losing its premise. A recent profusion of personal narratives, best-selling books and social entrepreneurs’ projects suggest that, as a culture, we are finally starting to come to terms with our mortality. Nationally, the Conversation Project is engaging people to discuss their wishes for end-of-life care. Death Cafes and Death Over Dinner events are popping up across the country, reflecting an appetite for exploring these matters. So too, the Dinner Party and the Kitchen Widow are using meals as a communal space to explore life after loss.

Admittedly, contemplating mortality is not (yet) a national strong suit. That’s why these cultural stirrings are so significant. At a minimum, our heightened awareness and willingness to talk about illness, dying, caregiving and grieving will lead to much better end-of-life care. However, the impact on American culture needn’t stop there. Like individuals who grow wiser with age, collectively, in turning toward death, we stand to learn a lot about living.

Doctors can be valuable guides in this process. In matters of illness, people are fascinated by the question, what would doctors do? Consider the social phenomenon of Dr. Ken Murray’s online essay, “How Doctors Die.” Dr. Murray wrote that doctors he knew tended to die differently than most people, often eschewing the same late-stage treatments they prescribed for patients. The article went viral, being read by millions, and reprinted in multiple languages in magazines, newspapers and websites across the globe.

Dr. Murray’s observation even engendered studies of doctors’ preferences for care near the end of life. So far, results are mixed. In a Stanford study, 88 percent of responding physicians said they would avoid invasive procedures and life-prolonging machines. But a newly released comparative study of Medicare recipients, as well as a longitudinal study and separate analysis of Medicare data published in January, suggest that the actual differences between end-of-life treatments that doctors and nondoctors receive are slight. Perhaps like nearly everyone else, when life is fleeting, physicians find it difficult to follow their previous wishes to avoid aggressive life-prolonging treatments.

For what it’s worth, the terminally ill colleagues I’ve known, including those I’ve been privileged to care for, have usually been willing to use medical treatments aplenty as long as life was worth living, and took great pains to avoid medicalizing their waning days. In any event, the public’s interest in the medical treatments that doctors choose must not be allowed to reinforce our culture’s tendency to see dying solely through medical lenses. More to the point is the question, how do dying doctors live?

What dying doctors do with their time and limited energy, and what they say, are deeply personal, sometimes raw and often tender. Like everyone else, doctors experience pain and suffering – yet many speak of a deepening moment-to-moment sense of life and connection to the people who matter most.

Listen to a few.

Dr. Jane Poulson lost her sight to diabetes while still in medical school. After years of successful internal medicine practice, Dr. Poulson developed inflammatory breast cancer and knew it would claim her life. Writing in the Canadian Medical Journal she said:

In a paradoxical way, I think I can say that I feel more alive now than ever before in my life … When you presume to have infinity before you the value of each person, each relationship, all knowledge you possess is diluted.

I have found my Holy Grail: it is surrounding myself with my dear friends and family and enjoying sharing my fragile and precious time with them as I have never done before. I wonder wistfully why it took a disaster of such proportions before I could see so clearly what was truly important and uniquely mine.

About a year after being given a diagnosis of incurable esophageal cancer, Dr. Bill Bartholome, a pediatrician and ethicist at the University of Kansas, wrote:

I like the person I am now more than I have ever liked myself before. There is a kind of spontaneity and joyfulness in my life that I had rarely known before. I am free of the tyranny of all the things that need to get done. I realize now more than ever before that I exist in a ‘web’ of relationships that support and nourish me, that clinging to each other here ‘against the dark beyond’ is what makes us human … I have come to know more about what it means to receive and give love unconditionally.

Dr. Bartholome referred to this period before his death as “a gift.”

It has given me the opportunity of tying up the ‘loose ends’ that all our lives have. I have been provided the opportunity of reconnecting with those who have taught me, who have shared their lives with me, who have ‘touched’ my life. I have been able … to apologize for past wrongs, to seek forgiveness for past failings.

A healthy defiance is often palpable within the personal decisions of doctors who are living in the growing shadow of death. My friends Herbert Mauer and Lisa Mills, long-married oncologists, boldly renewed their vows before a crowd of family and friends during the months Herb was dying of cancer. In “When Breath Becomes Air,” the neurosurgeon Dr. Paul Kalanithi relates the decision he and his wife, the internist Dr. Lucy Kalanithi, made to have a child, while knowing full well that he was unlikely to see their daughter grow up. Such affirmations of couplehood in the face of death are not denial; but rather insubordination, eyes-wide-open commitments to living fully despite the force majeure.

Gratitude also commonly emerges in the experiences of dying clinicians. In one of our last email exchanges, my friend, the clinical psychologist Peter Rodis, wrote:

The shock of knowing I’ll die has passed. And the sorrow of it comes only at moments. Mostly, deep underneath, there is quiet, joyous anticipation and curiosity; gratitude for the days that remain; love all around. I am fortunate.

The neurologist Dr. Oliver Sacks concluded his essay “My Own Life” in exaltation.

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

These experiences are like dabs of paint on an Impressionist’s canvas. Taking in this contemporary ars morendi we can appreciate how dying and well-being can coexist. For all the sadness and suffering that dying entails, our human potential for love, gratitude and joy persists.

How fitting would it be for a corrective to the medicalization of dying to come from the medical profession itself? The general public’s interest in what doctors do can teach all of us about living fully for whatever time we each have.

Ira Byock, a palliative care physician, is founder and chief medical officer of the Providence Institute for Human Caring in Torrance, Calif. His books include “Dying Well” and “The Best Care Possible.”

When Doctors Have Conflicts of Interest

My mother-in-law is an impressive woman.

At the age of 77, she still maintains a garden the size of my entire backyard, on the three acres of land she and my father-in-law, now 81, share in rural western Pennsylvania.

She does not tolerate stasis, and anytime my father-in-law collapses into his plaid armchair in front of the television, she appears on the scene within a minute or two, barks at him that there will be plenty of time to rest when they’re in the old age home, grabs the remote control, and turns the television off while simultaneously giving him another task to perform.

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Mikkael Sekeres, M.D.

Mikkael Sekeres, M.D.Credit

She has kept old age at bay through constant activity, sheer strength of will, and a splash of denial.

Her hip must have been bothering her for some time, then, before she let me and my wife in on her problem. At our insistence, she told one of her doctors, who sent her for X-rays and reviewed them with her, in his office, with my wife at her side.

“Ouch,” her doctor said, pointing at the image of her hip where her femur was scraping against the acetabulum of her pelvis, bone-on-bone. “That looks like it hurts.”

“Well, I do a few chores around the house in the morning and rest on the couch with a heating pad, and then I’m all right,” she told him.

My wife interjected. “Just so you understand, by ‘a few chores,’ she means that she plants five flats of flowers.”

Her doctor’s eyes widened. Recognizing that she is the type of person who would have to decide for herself when she was ready for surgery, he recommended she let the rest of us know when that time occurred. Earlier this summer, she decided it was time.

She met with the orthopedist who would perform her surgery, and the two quickly bonded. As it turned out, his wife is also a gardener, and like my father-in-law, he collects classic cars. He discussed the surgery he intended to perform, her likely recovery period, and then paused.

“Now, I have to tell you that the artificial hip I’m going to use is one that I had a hand in inventing, and although I will receive no royalties for implanting this hip in you, I do have a conflict of interest, and want to make sure you’re O.K. with that.”

I sit on our institution’s conflict of interest committee and this scenario, while not falling into the majority of doctor-patient interactions, is becoming increasingly common.

There are a number of different types of potential conflicts that can arise.

Like my mother-in-law’s surgeon, a doctor may invent a technology, or develop a drug, and receive payments every time that technology or drug is used – though, as my mother-in-law’s doctor told her, no royalties are received if the device is used at our institution. Still, you might wonder if his using that artificial hip influences other doctors who want to emulate him to use the same device, from which he would receive royalties.

Or, a doctor may provide advice to a company, for which she receives an honorarium, and conducts research (such as being an investigator on a clinical trial) using that company’s product. Will the payment she received influence her interpretation of the clinical trial results, in favor of the investigational drug? Or did she make the trial better because of the advice she provided?

What if, instead, the drug for which she provided advice is already commercially available. How much is her likelihood of prescribing this medication – what we call a conflict of commitment – influenced by her having been given an honorarium by the manufacturer for her advice about this or another drug made by the same company?

We know already that doctors are influenced in their prescribing patterns even by tchotchkes like pens or free lunches. One recent study of almost 280,000 physicians who received over 63,000 payments, most of which were in the form of free meals worth under $20, showed that these doctors were more likely to prescribe the blood pressure, cholesterol or antidepressant medication promoted as part of that meal than other medications in the same class of drugs. Are these incentives really enough to encroach on our sworn obligation to do what’s best for our patients, irrespective of outside influences? Perhaps, and that’s the reason many hospitals ban them.

In both scenarios the doctor should, at the very least, have to disclose the conflict to patients, either on a website, where patients could easily view it, or by informing them directly, as my mother-in-law’s doctor did to her.

More importantly, what do patients think of these conflicts? Back in the comfort of our family room, following her appointment, I asked my mother-in-law that very question.

“Oh, I was glad he told me.” I prodded her to go on, as she shifted in her chair, trying to get comfortable. “It made me trust him more. He must be an expert if he helped invent the hip. And of course I want him using the one he invented, he knows it better than anyone!”

It turns out, she’s not alone. In a study of over 600 surgical patients, about 80 percent felt it was both ethical and either did not influence, or actually benefited their health care, if their surgeons were consultants for surgical device companies.

It’s complicated. Certainly, the relationships doctors have with drug or device manufacturers drive innovation, and help make those products better for patients. But can we ever be sure these relationships aren’t influencing the purity of our practice of medicine, even a little?

Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic. Follow him on Twitter @MikkaelSekeres.

Pelvic Exams May Not Prolong Life, a Task Force Says

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Credit Stuart Bradford

Many women dread the indignity of the annual pelvic exam, in which they are poked and prodded with their feet in stirrups.

Now an influential government task force says there isn’t evidence that routine pelvic exams are necessary or prolong a woman’s life. Some experts think they may even do more harm than good.

And although some 60 million pelvic exams are done each year, the practice hasn’t been studied much. The United States Preventive Services Task Force, a panel of experts in preventative and primary care, declared today that the current evidence is “insufficient” to assess the balance of benefits and harms of the pelvic exam. The task force performed an exhaustive search of the medical literature published over the past 60 years and located only eight studies looking at the diagnostic accuracy of pelvic exams for just four medical conditions.

“We can’t make a recommendation one way or the other at this time,” said Dr. Maureen Phipps, the chairwoman of obstetrics and gynecology at Brown University’s Warren Alpert Medical School and a member of the task force. “We need more evidence.”

The finding refers only to the practice of routine pelvic exams for healthy women, and does not apply to women who are pregnant or those with existing conditions or symptoms that need to be evaluated.

“This is not a recommendation against doing the exam,” Dr. Phipps emphasized. “This is a recommendation to call for more research to figure out the benefits and harms associated with screening pelvic exams. That’s the big message here.”

This is the first time the Preventive Services Task Force has turned its attention to pelvic examinations, which can include a visual exam of external genitalia, an internal exam using a speculum, manual palpation to check the shape and size of the uterus, ovaries and fallopian tubes, and the simultaneous palpation of the rectum and vagina using lubricated gloves.

The recommendations about pelvic exams do not change current guidelines for cervical cancer screening, in which cells are collected from the surface of the cervix and vagina. The screening test is recommended every three years for women ages 21 to 29 and every five years for ages 30 to 65.

Pelvic exams have been subjected to quite a bit of scrutiny in recent years, possibly because of turf battles between physicians and reimbursement battles with insurers. The exams can be both time-consuming and expensive, in part because doctors are advised to have a chaperone present during the exam.

In 2014, the American College of Physicians told doctors to stop performing routine pelvic exams as part of a physical, saying there is no evidence they are useful and much evidence to suggest they can provoke fear, anxiety and pain in women, especially those who have suffered sexual abuse or other trauma.

The American Academy of Family Physicians endorsed that recommendation. But the American College of Obstetricians and Gynecologists (ACOG) continues to recommend an annual pelvic examination for women 21 and older, while acknowledging a dearth of data. Its Well-Woman Task Force, which was convened in 2015, recommended annual external exams but said internal speculum and bimanual exams for women without specific complaints or symptoms should be “a shared, informed decision between the patient and provider.”

“No woman should ever be coerced into having an exam, and that discussion should take place in a nonexam room environment, while the woman is fully dressed and sitting at equal level with the provider at a round table, without a desk between them,” said Dr. Barbara S. Levy, vice president for health policy at ACOG.

But Dr. Levy says that the exams should not be scrapped because trials – which would be difficult to design and fund — have not been carried out.

“I think there’s tremendous value in the laying on of hands,” Dr. Levy said. “Touch has a lot to do with establishing trust, and there are many things I can pick up on during a pelvic exam because I’m skilled and trained.”

She may pick up on the fact that a woman is experiencing abuse or domestic violence, or discover that a woman may benefit from interventions to strengthen muscles to prevent urinary incontinence down the line, she said, adding, “This is the art of medicine.”

Most obstetrician-gynecologists do routine pelvic exams, as do many other physicians, and the majority of preventive care visits between 2008 and 2010 included one, according to the task force’s report.

Health care providers say they can pick up on myriad gynecologic conditions during a pelvic exam, including cancers of the cervix, vagina, vulva, ovaries and endometrium, sexually transmitted diseases, genital warts and genital herpes, uterine fibroids, ovarian cysts and more.

But the task force found no studies that assessed how effective the exams are for reducing death and disease. So for example, although a pelvic exam might be useful in detecting ovarian cancer, the disease is relatively rare, so exams often result in false-positives that can lead to unnecessary surgery, the report said.

In four ovarian cancer screening studies with over 26,000 screened patients, more than 96 percent of the positive test results were false positives, meaning there was no real disease and many patients had unnecessary follow-up procedures.

But Dr. Levy said the call for more research is impractical. Exams are part of preventive care that is tricky to evaluate or assess, she said, and such studies are unlikely to get funded. “Looking for evidence-based answers to centuries-old processes and procedures doesn’t always make sense,” she said.

Reading Novels at Medical School

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Credit Getty Images

Sitting in a classroom at Georgetown Medical School usually reserved for committee meetings, we begin by reading an Emily Dickinson poem about the isolating power of sadness:

I measure every Grief I meet
With narrow, probing, eyes –
I wonder if It weighs like Mine –
Or has an Easier size.

It’s a strange sight: me, a surgical resident, reading poetry to 30 medical students late on a Tuesday night. Some of us are in scrubs, others in jeans; there are no white coats. Over the past four years, as the leader of the group, this has become my routine.

The students are here after long days in class and on the wards because they have discovered that medical education is changing them in ways that are unsettling. I remember that uneasiness well. My own medical education began with anatomy lab. The first day with the cadaver was unnerving, but after the first week the radio was blaring as we methodically dissected the anonymous body before us.

Two years later, on my first clinical rotation, I discovered that it does not take long to acclimate to the cries of patients as I hurried past their rooms, eager not to fall behind in a setting where work must be done quickly and efficiently. This practiced detachment feels necessary, a form of emotional and physical self-preservation. But with little time to slow down, ignoring our own thoughts and feelings quickly hardens into a habit.

During my first year in medical school, I found myself gravitating toward my old comfort zone — literature. As an English major, I had grown accustomed to the company of books and was feeling their absence now that “Don Quixote” had been displaced by Netter’s “Atlas of Human Anatomy.” I could look to Netter for concrete answers, but I needed Cervantes to help me formulate questions I had trouble pinning down, like why it was so easy to ignore the dead (and later, living) bodies around me? Illustrated cross-sections of the brain did little to illuminate the workings of my own mind. I needed time and space for introspection. The solution came in the form of a book club that later became an official course.

At Georgetown, the goal of our new literature and medicine track is to foster habits of reflection over four years of medical school. On the surface, the assigned books have nothing to do with medicine. We read no patient narratives, doctors’ memoirs or stories about disease.

Today’s topic is Haruki Murakami’s novel “Colorless Tsukuru Tazaki and His Years of Pilgrimage,” which tells the story of a depressed middle-aged Tokyoite’s attempt to retrace his past in order to understand how his life became so empty. We talk about the main character’s colorless perception of the world, and why his mind feels so inaccessible to us.

I receive an email from a student later that evening. He, an aspiring psychiatrist, tells me the story of a much-admired college mentor. “I heard last week that he committed suicide. I am still crushed,” he writes. “He was diagnosed with depression but seemed to be doing great.” If he so misjudged his teacher’s state of mind, he worries, how will he make it as a psychiatrist?

Earlier this year, we placed the ethics of animal testing under the magnifying glass of Karen Joy Fowler’s “We Are All Completely Beside Ourselves.” The novel is narrated by a woman whose “sibling,” we later discover, is a chimpanzee who was raised with her as part of a human-chimp experiment. We used the book to think through real-life examples like the Silver Spring Monkeys — a series of gruesome primate experiments that both galvanized American animal-rights groups and led to breakthrough scientific discoveries.

A third-year student talked about the three years he spent working with rhesus macaques. Research from his lab led to breakthrough discoveries about memory and behavior and contributed to therapies such as deep brain stimulation. “Doesn’t that answer the ethical questions?” he asked.

Another student talked about studies that she worked on for several years before starting medical school. “Have you heard of professional testers?” she asked the room. “People whose only source of income is volunteering for different studies, mostly college kids and immigrants? Shouldn’t we be talking about human research also?” For me, the discussion proved transformative. I walked into that class firmly supporting animal research and walked away still supporting research but no longer eating meat.

Our busy jobs on the hospital wards require precision and efficiency, but in literature class we can slow down and explore human lives and thoughts in a different, more complex way. The class is an anatomy lab of the mind. We examine cultural conventions and conflicting perspectives, and reflect on our own preconceived notions about life and work. Reading attentively and well, we hope, will become a sustaining part of our daily lives and practice.

As I’m walking out of the classroom at the end of the evening, a third-year student approaches me to tell me he’s been thinking more deeply about his experience of being an unrelated organ donor to his step-uncle, a man he barely knew. “It’s been on my mind since we read Ishiguro’s ‘Never Let Me Go’ last month,” he says. “I want to write about it. I don’t even know how I feel about it, and I need to figure it out.”

Daniel Marchalik, M.D., is a urologist in Washington and heads the literature and medicine track at the Georgetown University School of Medicine.

Leaving the Pediatrician? Not at 26

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Lule Rault, 26, talks with her doctor, pediatrician Ramon Murphy, who she’s visited since childhood at Uptown Pediatrics in Manhattan.

Lule Rault, 26, talks with her doctor, pediatrician Ramon Murphy, who she’s visited since childhood at Uptown Pediatrics in Manhattan.Credit Yana Paskova for The New York Times

Lule Rault took a seat in the waiting room of Uptown Pediatrics on Park Avenue, across from several young mothers with babies in tow. A toddler played with the toys on the waiting-room floor.

“I felt like they might think I’m just another young mom or something,” she said, “since I am so close to their age.” But Ms. Rault, a 26-year-old medical student, was there this month for her own annual checkup. She has been a patient at Uptown Pediatrics since her own infancy. And she plans to remain so until she finishes her M.D. at Tulane University. At that point she will be 29.

She is not looking forward to the transition.

“I don’t have to leave Dr. Murphy, do I?” she said in an interview by email. “I’m only 26!” And she is not Dr. Ramon Murphy’s only patient long out of high school. “The last time I was there, he told me there was one patient older than me — a boy.”

A poll from the Pew Research Center last month found that for the first time in more than a century, young adults are more likely to live with their parents than with a partner or a spouse. So it should come as no surprise that many are perfectly happy to remain with their childhood physicians. The age at which patients leave the pediatric nest varies, depending on whether their doctors are trained to treat adolescents and young adult patients. Historically, that age has been 18 to 22. It seems to be moving up.

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Lule Rault, 26, left, emerges from an appointment at Uptown Pediatrics in Manhattan. The waiting room there caters both to young children and to patients in their twenties.

Lule Rault, 26, left, emerges from an appointment at Uptown Pediatrics in Manhattan. The waiting room there caters both to young children and to patients in their twenties.Credit Yana Paskova for The New York Times

Under the Affordable Care Act, children can remain under their parents’ insurance plan until they are 26, which since 2010 has added three million young people to the insurance rolls, according to the Department of Health and Human Services. But that doesn’t mean healthy young adults are regularly visiting any doctors.

“Young adults on the whole are not very connected to the health care system,” said Dr. Patience White, a director at the Center for Health Care Transition Improvement, a group that studies the transition from pediatric to adult health care. “They often turn to the emergency room when they get sick.”

In New York City, many pediatricians are willing to keep their older patients so that they won’t stray from the system. Dr. Murphy and other pediatricians also said many young adults have found it impossible to find an internist who will accept insurance from new patients. Some require an initial concierge fee that runs as much as $3,000; those who do take insurance often don’t have appointments available for four to six months.

“The patient, or parent, reasons that it makes more sense to just stay with the pediatrician,” Dr. Murphy said.

Furthermore, a growing number of pediatricians are trained to treat adolescents and young adults. Dr. Murphy’s practice reflects his 19 years at the Adolescent Health Center at Mount Sinai Hospital in Manhattan. It’s a different kind of rapport from the one he has with his grade-school patients.

“I ask them about friends, school, career choices,” he said. “I wasn’t cut out to wear clown noses and funny ties.”

His waiting room at Uptown Pediatrics even has two sides — one furnished with the familiar trappings of the Sesame-Street-and-K.C.- Undercover set, the other with seating and reading material for adult-size patients.

“I think it’s a New York City phenomenon,” said Dr. Ralph Lopez, whose Upper East Side practice focuses primarily on teenage boys and young men. “Your mom and dad may pick out an internist for you, but you don’t like the doctor, so you stay with someone like me.” He added, “I’m seeing two 25-year-olds later today.”

Andrew Ruvkun, 20, who runs varsity track at Carleton College in Minnesota, plans to stay with his Manhattan pediatrician, Dr. Sol Zimmerman, at least until he finishes college.

“He’s a nice guy, so for now this is it for me,” Mr. Ruvkun said. “He signs off on my N.C.A.A. forms, and he’s the only doctor I’ve ever known.”

Suzy Storr, 25, an artist who a year ago moved back to her Park Slope home after finishing her studies in England, would have liked to keep her old pediatrician, Dr. Sylvain Weinberger, but was told she had aged out of his practice.

“It was kind of sad to me,” she said. “I’d always had a fear of needles, and while I’m better about it now, he always knew how to comfort me.”

Dr. Weinberger suggests his patients find another physician when they leave for college. Up to age 19, “they can always call me,” he said.

As a practical matter, he noted, any patient 18 or older who needs to be hospitalized will go on an adult floor, where a pediatrician may not have admitting privileges.

Ms. Storr tried an internist, but she felt that she was“kind of rushed” and that the visit was about “doing a checkup and kicking you out.”

In New York City, several private practices devoted to adolescent medicine have sprung up to fill the gap for young adults whose needs have outgrown the so-called baby doctor.

“Many pediatricians are uncomfortable with talking about birth control, condom use,” said Dr. Karen Soren, director of adolescent health care at the NewYork-Presbyterian Morgan Stanley Children’s Hospital. “This is part of why adolescent medicine came into being.”

“Traditionally,” she added, “adolescent medicine was intended to deal with kids 12 to 18 years old. It became pretty clear kids didn’t suddenly change into adults at 18, so a lot of us kept them until 21 and beyond.”

Dr. Cynthia Pegler, whose private patients on the Upper East Side primarily are young women, will continue to treat patients until they are ready to be parents themselves.

“My official rule is it is really time to go when you yourself are ready to have a baby,” Dr. Pegler said.

Dr. Soren recalled one patient who returned to her adolescent clinic after a year at an adult internist.

“I tried to prepare her as best I could,” Dr. Soren said. “I printed out her vaccines, her medical records. I made an appointment for her with the new doctor. She went once, but said she went into the waiting room and there were all these ‘old people.’ A year later she came back to refill her birth control pills, so I began seeing her again.”

Dr. David Bell, medical director of the Young Men’s Clinic and the Family Planning program at NewYork-Presbyterian, said that when he started at the clinic 16 years ago, the age cutoff was 24. Now it’s 35.

“I pushed it up to 27, then 30, and now 35,” Dr. Bell said. “I’m kind of sticking to 35.”

Drug Company Lunches Have Big Payoffs

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A free lunch may be all it takes to persuade a doctor to prescribe a brand-name drug instead of a cheaper generic, a new study suggests.

Using Medicare’s Open Payments data, researchers collected information on 279,669 doctors who received 63,524 payments reported by drug companies. They concentrated on specific drugs in four categories: cholesterol lowering statins, two types of blood pressure drugs and antidepressants.

The study, in JAMA Internal Medicine, found that 95 percent of the payments were for meals sponsored by drug companies, worth about $12 to $18 each.

Doctors who were treated to a single meal, where drug companies present information about their medications, were 18 percent more likely to prescribe Crestor, a brand-name cholesterol-lowering medicine. They were 70 percent more likely to prescribe Bystolic, a brand-name beta blocker for high blood pressure, and 52 percent more likely to prescribe Benicar, also for hypertension.

The more meals doctors had, the more likely they were to prescribe the promoted drug.

The Doctor’s Ties

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Credit Getty Images

I carefully unwrapped the lilac-colored tissue paper as my patient watched, expectantly. Given its size and shape, I was pretty sure I knew what was in this package.

He was in his late 60s and had been coming to our cancer center for years – first for chemotherapy to treat his lymphoma, then for a bone marrow transplant when the chemotherapy didn’t work. Now, cured of his lymphoma, he was in our clinic for the myelodysplastic syndrome that our treatments had caused. His bruised fingers, a consequence of the low platelets resulting from his failed bone marrow, tapped his knees impatiently until I uncovered his present.

“A tie! I love it! What a beautiful pattern!” I exclaimed, holding it up against my shirt.

He beamed at me. “See? I know you, I know what you like!” he almost shouted.

“I’m touched. Thank you,” I told him. He was still grinning. He had just retired as a tailor, and this was his business – knowing men’s styles, and making them feel comfortable in their clothes. He had done well and it gave him pleasure, I suspect, to be able to help me.

Perhaps I’m in the minority of men, but I appreciate being given ties.

My kids get me ties for Father’s Day, clichéd as that may be. Their taste tends toward bright colors and animals, and I dutifully wear them to work, proudly displaying them to colleagues and patients alike, despite my wife’s entreaties to keep an extra, more subdued tie at the office that I could change into.

My dad, on the other hand, hated ties. He even declared, on the few occasions I ever actually saw him wear one, that he hoped the man who invented these objects of asphyxiation suffered mightily during his own lifetime.

Yet, when my dad died, it was his ties I turned to. After his funeral, I sat on the floor of his closet and sorted through his collection, some decades old, of varied patterns and widths, some still bearing the stains from hurried pasta dinners or cups of coffee. And during the weeks that followed, when I felt as if I roamed the earth unmoored in his absence, I wore his ties to give me strength, and bring me peace.

I still do.

My patients often comment on my ties. I have one, I think intended for a lawyer, subtly patterned with tiny wolves in sheep’s clothing. When a patient notices the gag, I joke that it’s probably not what they were hoping for in an oncologist, and they laugh, breaking the tension in the room.

Ties can be conversation starters, allowing me and my patients to talk about mundanities, before we launch into the seriousness of cancer. Most patients compliment me on my ties. A few of my patients, all older and more formal in how they approach their doctors’ appointments, come dressed to the nines to my clinic, and I make sure to compliment them, too, as they clearly value appearances. But occasionally, someone will make a comment that is vituperative. One patient blurted, as soon as I walked into the clinic room:

“Whoa, doc, that tie is awful! Did you get dressed this morning with the lights off in your bedroom?”

I didn’t get upset. I’m not exactly considered a fashion maven, and style is subjective. I also knew, as did he, that his leukemia had returned, and suspected he was taking out his anger about the return of his cancer on the fabric of my tie.

Ties in medicine can be controversial. There is even a growing movement to ban ties, as they may be vehicles for transmission of germs in their casual draping across hospital beds and exam tables as we move from one patient to the next. Many pediatricians eschew ties for this reason – as well as to prevent themselves from choking, as infants and toddlers are prone to grab them during a clinic visit. This is less likely to occur with adult patients, although it did to me recently.

I was examining a woman in her 30s with leukemia who had suffered mightily at the hands of our chemotherapy, but had emerged in a remission and was feeling better. As I stood before her and reached to feel for lymph nodes in her neck, she similarly reached up to straighten my tie and tighten the knot. Our eyes met, and we both laughed, embarrassed.

“I’m sorry,” she said. “Your tie was off to the side. I need you looking right for me.”

Many patients have expectations of how professional their doctors should appear. If a tie helps build confidence as they face the uncertainty of cancer treatment, as wearing my dad’s ties helped me build confidence as I faced life without a father, then I’m happy to wear one.

Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic. Follow him on Twitter @MikkaelSekeres.

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Finding Ways to Keep Patients at Home

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Credit Getty Images

My patient was a proudly elegant woman in her 70s who lived alone. Her Parkinson’s disease had so severely restricted her ability to move that it would take her hours to get dressed in the morning. And leaving the house was virtually impossible, so she had to rely on neighbors and friends from her church community for help with shopping.

She was adamant that she wouldn’t want aggressive treatment to keep her alive. She’d been hospitalized many times, and she told me she wouldn’t want to take a hospital bed that would be better used for someone else. So she dutifully completed an advance directive that made her wishes clear. It said that she would not want to be kept alive on a breathing machine, and that she wouldn’t want cardiopulmonary resuscitation if her heart stopped. She also wouldn’t want to be fed through a tube if she was no longer able to eat. What was most important to her, though, was staying at home and avoiding a nursing home.

As a palliative care physician, I always urge my patients to complete advance directives. These are legal documents that tell doctors and family members what treatment they do and don’t want if they’re ever unable to make decisions for themselves. That’s important, because if I don’t know what my patients want, the default is to do everything to keep them alive, which typically results in unnecessary and costly treatment. Indeed, one of the most often-cited arguments for advance directives is the fact that 25 percent of Medicare spending is for people in the last year of life.

When my patient developed a cough and a fever, likely a result of pneumonia, she became too confused to make decisions for herself. Thanks to her advance directive, her family knew that she didn’t want aggressive treatment, and we knew that she wanted to stay home. So we arranged for short-term daily nursing visits and enough support so that, with additional help from her family, she was able to remain at home as she wanted.

I thought that she would get worse without aggressive treatment in the hospital, and that we would enroll her in hospice, so I was surprised when she began to improve. Soon she was able to make decisions for herself and even returned to the same level of independence that she’d had before she became sick. That’s when it became obvious to me that advance directives have their limits.

My patient lived, as many people with chronic, serious illnesses do, on a thin ledge of independence. The smallest nudge — a few missed medication doses, the loss of just a little support — left her entirely vulnerable. In my patient’s case, that nudge came two months later, when her neighbors ran into financial problems and their daughter, who had been doing the grocery shopping for my patient, had to take an after-school job. My patient valued her independence more than anything, so whenever her neighbors and her out-of-state family checked on her, or when we called her, she told us all that she was fine.

For three weeks, my patient subsisted on nothing but white rice, because that was all she had in the house. When her grand niece called us and asked us to check on her, we sent a social worker and a nurse to visit her. We found her housebound, surrounded by garbage, with no clean laundry and no toilet paper.

Despite our best efforts, we couldn’t do enough to keep her safe at home, so she went to live in a nursing home, where she spent the last two months of her life. An advance directive had helped her stay out of the hospital, as she had wanted. And perhaps it even made a bed available for someone who needed it more, as she’d hoped. But that piece of paper didn’t help her to live out her final months with the sort of comfort and dignity that she deserved.

When we talk about advance directives and reducing costly and unnecessary treatment at the end of life, we should also be talking about ways we can provide more support. We need to make sure that people like my patient have access to the kinds of care that can help them remain safely and comfortably at home.

Now when I help my patients complete an advance directive that defines the treatment they don’t want, we also discuss what support they’ll need in the future. I talk with my patients and their families about what’s going to be necessary to keep them safe and comfortable in their homes today, and next month and — if they’re lucky — for the next few years.

Those sorts of discussions are essential, but they’re not enough. We also need to revise the way we think about advance directives. Advance directives help reduce health care costs at the end of life by avoiding aggressive treatment, but that’s not the most compelling argument for them. It’s not enough to reduce what we spend on aggressive treatment at the end of life; we also need to spend those resources in better ways.

For someone around my patient’s age, the average cost of a hospitalization is about $13,000. So Medicare should have been willing to spend $13,000 to keep her safe and comfortable at home. That sum would have been more than enough to pay for a visiting nurse to continue to check on her after she recovered from pneumonia and a home health aide to help her with bathing and dressing. And it could have paid the girl next door to do her grocery shopping so a frail elderly woman didn’t need to subsist on white rice because it was the only food she had.

We should have been able to provide all of that help. My patient was adamant that she didn’t want to spend her last days of life in a hospital, taking up a bed that someone else could use. Let’s make sure that when people like her forgo costly treatment at the end of life, they get something in return.

Dr. David Casarett is a professor at the University of Pennsylvania Perelman School of Medicine and the author of “Stoned: A Doctor’s Case for Medical Marijuana.”

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A Doctor on Schedule, Rarely on Time

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Credit James Yang

The minute I got on that bus, I knew I was in trouble. The driver sat at the stop just long enough to miss the green light. Then he inched along till he missed the next light and the one after that. He stopped at every stop even though not a soul was waiting.

The 20-minute trip to work stretched to a half-hour, then longer. I was late, late, late.

But this was a driver with a mission, clearly way ahead of schedule and trying to get back on track. He was very early; now I was very late. We were two people with competing, mutually exclusive agendas, and the one in the driver’s seat was bound to win.

A half-hour later, still sweating from racing the last five blocks on foot, with patients piling up in the waiting room, I became the one in the driver’s seat, with the mission and overriding agenda. Woe betide those with competing plans.

Just like that driver, I work under two mandates. One is professional: getting my passengers from point A to point B without breaking the law or killing anyone. The other one is less exalted but generally far more visible: I run according to a schedule that I ignore at my peril.

“She’s running late,” they mutter out in the waiting room. And indeed, she runs late for exactly the same reasons your bus runs late: too many slow-moving passengers lined up to board. Not enough buses or drivers. A person in a wheelchair requiring extra attention. Horrible traffic.

Not only does she often run late, but your poor driver — er, doctor — can run only so late before disaster ensues. She has obligations not only to you and your fellow passengers twitching in annoyance, but to a host of others, including the nursing and secretarial staffs and the cleaning crew at the end of the line. She can’t pull that bus in at midnight if everyone is supposed to leave by 7 p.m.

So when there is enough work to last till midnight, my agenda shifts, and not so subtly. Everyone can tell when I begin to speed. Every visit is pared down to the essentials. All optional and cosmetic issues are postponed, including most toenail problems and all paperwork. Chatting is minimized.

As a bus driver once said to me when I was foolish enough to start a conversation about his speed: “Lady, just get behind the white line and let me drive.”

Medicine is full of competing agendas. Even at the best of times, the match between the doctor’s and the patient’s is less than perfect, sometimes egregiously so. Some residents are now trained specifically in “agenda setting,” the art of successfully amalgamating all concerns.

But when it’s all about speed, an advanced skill set is required.

A patient has been waiting weeks for his appointment, anxiously rehearsing his lines. Bad luck that he showed up on a day I need him in and out in 19 minutes. He spends his first 18 unwisely, pretending everything is fine, making small talk, not quite mustering the courage to say what’s on his mind.

Then just as he is being ushered gently to the door, he pauses. “Oh, by the way …”

“Oh, by the way” is an infamous schedule buster. It means something bad: a suspicious lump, a sexually transmitted disease. Further, it is so common that an entire literature now addresses the “oh, by the way” phenomenon and how to tame it.

One favored tool is: “What else?” That question, asked by the doctor early in the visit, is intended to probe the patient’s agenda before it trumps the doctor’s.

As one set of researchers wrote: “The ‘what else?’ technique uncovers pertinent fears and anxieties up front and prevents an ‘oh, by the way, I have been having some chest pain’ from surfacing at the end of a visit.”

In other words: My agenda is to adopt your agenda, and then rework it so that I can drive on. Brutal, perhaps, but effective.

Very rarely do things work out for me the way they did for that driver who made me so late to work. Occasionally I have so much time that I can dawdle along the route.

I remember clearly the last time that happened. “How’s work?” I began. “What are you doing for exercise?” “Any hobbies?” “Your family, are they well?” I progressed rapidly through seatbelts, bike helmets, family medical history, end-of-life preferences — every single stop my bus typically has no time to make.

Every answer was “fine,” “yes,” or “I dunno.” Then the patient stood up: “Look, I have places to be. Are we done?”

We were two people with competing, mutually exclusive agendas. But that time the one in the driver’s seat lost.

Related:

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Think Like a Doctor: The Tired Gardener Solved!

On Thursday, we challenged Well readers to solve the case of a previously healthy 67-year-old gardener who abandoned his garden one summer, alarming his wife and adult children. For weeks this vibrant and energetic man had been the last one out of bed — something his family had never seen before. And his days were interrupted each afternoon with a fever that left him shaking and pale. More than 300 readers suggested diagnoses for this classic presentation of an unusual disease, and a couple dozen of you nailed it.

The correct diagnosis is…

Babesiosis

The first person to identify this unusual infection was Dr. Paige Szymanowski, a resident in her second year of training in internal medicine at the Beth Israel Deaconess Medical Center in Boston. She said she recognized the pattern of a fever with a low blood count, low platelet count and evidence of liver injury. Dr. Szymanowski hasn’t made up her mind what kind of doctor she’s going to be, but she is thinking of subspecializing in infectious diseases. I think she shows real promise in this area. Well done!

The Diagnosis

Babesiosis is caused by the parasite Babesia microti, a protozoa. It is usually transmitted by Ixodes scapularis, better known as the deer tick, the same small arthropod that transmits Lyme disease. Sometimes the two diseases occur together, passed on in the same bite. The disease can also be spread through blood transfusions from an infected donor.

Babesiosis is rare and occurs primarily in the Northeast and Upper Midwest — Minnesota and Wisconsin — regions of the United States. In healthy people it often causes no symptoms. However, those who are over 65 or who have some type of immune suppression – because of a chronic disease or medication – or those who don’t have a spleen are more likely to develop symptoms and can become quite ill or even die from this infection.

Easy to Miss

Babesiosis is difficult to diagnose, and the diagnosis is often overlooked, even in areas where infection is most common. Patients with babesiosis have few, if any, localizing signs to suggest the disease. Fever — which can be constant or, as was the case with this patient, intermittent — is common. So are shaking, chills, fatigue, loss of appetite, abdominal pain and headache. These symptoms, however, are seen in many infections. And indeed, our patient had all of these symptoms, but it took many weeks for him to get a diagnosis.

The diagnosis is confirmed when the ring form of the protozoa is seen on a blood smear, or when the Babesia DNA is detected in the blood. Doxycycline, which is used to treat other tick-borne diseases, is ineffective against this organism. An antimalarial medication (atovaquone) plus an antibiotic (azithromycin) are first-line treatments against this infection. Improvement is usually seen within 48 hours of starting the drugs.

Although the infection will often resolve without treatment, all who are diagnosed with the disease should be treated since, in rare cases, the bug will persist and become symptomatic if a patient later develops some immune system problem or has his spleen removed.

How the Diagnosis Was Made

Dr. Neil Gupta was leading the daytime on-call team at Saint Raphael’s hospital in New Haven, Conn., where the patient’s daughter had taken him. Dr. Gupta heard about this patient when the night team handed off the patients they had admitted on their shift and met him that morning. Seeing how well the patient looked, and hearing that he’d been given the usually benign diagnosis of hepatitis A, he turned his attention to patients who seemed sicker and more in need of thought and care. Until the patient spiked his usual afternoon fever.

One of the ways the doctor’s mind works is to put together pictures of what a disease looks like in a patient. We put these so-called illness scripts together based on our knowledge of the disease plus the patients we have seen who have had it.

When Dr. Gupta heard that the patient had spiked a temperature, he went back to see how he was doing. The patient was pleasant but didn’t say much. Perhaps there was a language barrier — he spoke with a thick Italian accent. Or perhaps he was one of those patients who just don’t focus on what ails them.

Hearing From the Patient’s Family

The patient’s wife and daughter, however, had been much more attuned to the changes in his health and behavior, and what they reported didn’t really sound like hepatitis. Was this the right diagnosis, Dr. Gupta wondered?

He sat down with the family in the nursing lounge and let them tell the whole story as they recalled it. The man had actually been sick for several weeks. He’d had a fever every day. And he was tired. Normally he never sat down, was never idle. These days it seemed he never left the house anymore. Never went into the garden. He just sat on the sofa. For hours.

Sometimes he had pain in his upper abdomen, but never any nausea; he had never vomited. But he did have a cough. This was not the man they knew, the women told him.

Reviewing the Symptoms

Dr. Gupta returned to the patient and examined him, this time quite carefully, looking for the signs common in hep A. The man’s skin was dark but not yellow; and his eyes, while appearing tired, showed no hint of yellow either. His liver was not enlarged or tender. He didn’t look to Dr. Gupta like a patient who had hepatitis A.

The patient did have tests that were positive for hepatitis A, however. Could these tests be wrong? Dr. Gupta suspected that was the case. O.K., if not hepatitis A, what did he have?

The young internist made a list of the key components of the case: He had recurring fevers every afternoon. He had a cough and some upper abdominal pain. Not very specific — except for the repeating fevers.

The labs were a little more helpful. His liver showed signs of very mild injury — again, not consistent with hepatitis A, which usually causes significant liver insult.

However, he did have a mild anemia that had gotten worse over the past three days. He’d had his blood count drawn two days earlier, when he went to the emergency room at Yale–New Haven Hospital. That showed a very mild anemia – slightly fewer red blood cells than normal. The evening before, the patient’s red blood cell count had dropped further. And today, even further. So his red blood cells were being destroyed somehow. To Dr. Gupta, that seemed to be a second important clue. In addition, his platelets were quite low.

Many Possiblities

So, the patient had cyclic fevers, a worsening anemia and a mild liver injury. That suggested a very different set of diseases.

The patient was a gardener and had been treated for Lyme disease. Could he have a different tick-borne illness?

Certainly a number of illnesses could present this way. The cyclic fevers were suggestive of malaria — rare in this country, but still worth thinking about.

Could this be mononucleosis? Or even H.I.V.? Those diseases can affect red blood cells and the liver. And they can last weeks or months. If those tests were negative, he would need to start looking for autoimmune diseases or cancers.

Finally, he would need to review the blood smear with the pathologist. Several of these diseases can provide clues when you look at the blood itself.

An Answer in the Blood

A call came to Dr. Gupta late the next day. The pathologist had tested the patient’s blood for the presence of the Babesia gene, and found it. The patient had babesiosis.

Dr. Gupta went down to look at the blood smear with the pathologist. There, in the middle of a sea of normal looking red blood cells, was a tiny pear-shaped object. It was one of the protozoa.

Dr. Gupta was excited. He pulled up a picture of the tick that spreads the disease and the tiny bug that causes it to show to the family. This was what was making the patient so very sick.

How the Patient Fared

The patient was started on the two medications to treat babesiosis the same day. Twenty-four hours later he spent his first day completely fever-free —the first in several weeks.

After a couple more days, the patient was up and walking around, asking to go home. He went home the following day, with instructions to take his two medications twice a day for a total of 10 days.

That was last summer. This summer, the patient is back in his garden. He is a little more careful to avoid getting tick bites. He wears his long pants tucked into his socks and his wife looks him over every night — just to be sure.

Think Like a Doctor: The Tired Gardener

The Challenge: Can you figure out what is wrong with a lively 67-year-old gardener who develops a daily fever and shaking chills along with chest pain and a dry cough?

Every month, the Diagnosis column of The New York Times Magazine asks Well readers to solve a real-life diagnostic mystery. Below you will find the details of a case involving a retired maker of surgical supplies who starts having daily fevers along with chills, chest pain and a dry cough.

I’ll give you the same information the doctor was given before he made this diagnosis. Will you be able to figure out what’s wrong?

As usual, the first reader to submit the correct diagnosis gets a signed copy of my book, “Every Patient Tells a Story,” and the pleasure of puzzling out a tough but fascinating case.

The Patient’s Story

“NoNo says he doesn’t feel good,” the 9-year-old girl said of her grandfather, handing her mother the thermometer. The woman dried her hands on her apron and took the device. She squinted at the little electronic numbers. Just under 102 degrees.

Her father had been sick for weeks. Feverish, weak, not eating. It was late summer and the tomatoes and eggplants in the garden were ripe, but he hadn’t even walked through his garden for days, so she knew he wasn’t feeling well. But this was the first time he’d admitted that something more serious might be going on.

It was about time. She’d taken her 67-year-old father to several doctors over the past two months. They’d looked him over and given him antibiotics, but it hadn’t helped.

“Tell NoNo that if he’s feeling sick he’s got to go to the hospital,” she told the little girl. She darted back to her grandfather’s room then quickly returned. “He says he’s ready to go.”

The woman wasn’t sure exactly when her father had started to get sick, but six or seven weeks earlier she had noticed that he was no longer the first one out of bed. Instead of being up and out before 7 a.m., he wouldn’t get up until late morning. And he started to have strange shaking chills each afternoon and evening, followed by a fever — regular as clockwork.

He looked sweaty and pale. She asked him what was wrong, but he said he was fine. Or sometimes he’d say he felt a little tired. After an hour or two the fever would pass and he’d just look tired, but the next day, or sometimes the day after, the fever would be back.

The First Diagnosis

The woman first took her father to his regular doctor. Knowing how much he loved to work in his garden, the doctor figured he probably had Lyme disease. It was summertime, and Lyme was common in the area of Connecticut where they lived. Plus, he practically took root in the half-acre garden back behind the house where he lived with his wife and their children and grandchildren.

This was the first summer the woman could remember where her father wasn’t out in his garden every single day. This year it seemed that whole weeks would go by when he did nothing but look out the window at his beautiful handiwork.

Her father took antibiotics for the presumed Lyme. It didn’t help.

A Second Diagnosis

When the patient went for a follow-up visit, he told his doctor that his stomach was bothering him a bit. So he was referred to a gastroenterologist. That doctor diagnosed Helicobacter pylori – a bacterium tough enough to survive the acid environment of the stomach that can cause pain and ulcers.

He took two weeks of treatment for that — three medications to kill the bug, and one to neutralize the acid they thrive in. That didn’t stop the daily fevers, either.

Recently the man’s wife noticed that he’d developed a dry cough. Was this a pneumonia? His doctor gave him yet another antibiotic. And he was still taking that pill when he agreed to go to the emergency room.

Pneumonia?

So three generations — wife, daughter and granddaughter — got in the car with the man they loved and drove to the hospital where the daughter worked.

The emergency room was quiet when they arrived, and after explaining that the patient had been having fevers for weeks, the patient and his entourage were taken into the back so he could be seen right away.

He did have a fever but otherwise looked pretty healthy. The doctors there seemed to focus on the cough and fever. They figured he had a pneumonia that wasn’t responding to the antibiotics he was taking. And when a chest X-ray failed to show any sign of pneumonia at all, the doctors sent him home.

You can see the note from that first visit to the Emergency Department here.

First ER Visit

If Not Pneumonia, Then What?

The next day, the man felt no better. His daughter was distressed. Her father was sick. Antibiotics weren’t working. And he was getting worse.

She called his primary care doctor again. He was also worried, he told her. But he didn’t know what to suggest.

What if she tried a different emergency room?, she suggested. They had gone to Yale-New Haven Hospital initially because that’s where she worked, but what if they went to the smaller branch of the hospital, St. Raphael’s Hospital, less than a mile away. They had different doctors there, and the hospital had a different feel — local and friendly rather than big and academic. Maybe they would find a doctor there who could help them figure out what was going wrong. It was unorthodox, the doctor told her, to shop around emergency rooms. And it wasn’t clear what another E.R. visit might do. But he was also worried about the patient, and it was certainly worth a try.

Another E.R. Visit

So early that evening they all got back into the car and drove to the St. Raphael campus. The E.R. was bustling when the family came in. Once again he had a fever – 101.6 degrees. His family explained how sick he’d been, how tired. And yet when the doctor examined him, he seemed well enough. He couldn’t find anything abnormal beyond the fever.

The labs told a slightly different story. His red blood cell count was low. So were his platelets – a type of blood cell that helps blood to clot. What was particularly strange was that these two findings had been checked the day before at the other E.R. and had been fine. And there was some evidence that he had some liver damage.

And when tested for viral hepatitis — a common causes of abnormal liver tests — he tested positive for hepatitis A and possibly hepatitis B as well.

He was admitted to St. Raphael’s Hospital because of his worsening anemia and viral hepatitis.

You can see the note from this second emergency room visit, and the admission note from the night team here.

The Second ER Note

Admission Note

Fitting the Pattern

The next morning, Dr. Neil Gupta saw the patient. Hearing the patient’s story, and the diagnosis of hepatitis A infection, was a little puzzling. Patients with hepatitis usually have mild flu-like symptoms, with a loss of appetite, nausea and vomiting, plus fatigue, low-grade fever and a generalized sense of being unwell. Certainly this patient didn’t feel well, but he had no nausea, no vomiting. And his fever came in spikes. The pattern didn’t really match.

Dr. Gupta sat down with the patient’s family and reviewed all the symptoms and the timeline. Then he reviewed all the labs. He sent off a bunch of tests.

You can see Dr. Gupta’s note here.

The Doctor’s Note

Solving the Mystery

Dr. Gupta was finally able to figure out what was wrong with this man. Can you?

The first person to figure out what is really going on with this 67-year-old gardener gets a copy of my book and that lovely sense of satisfaction that comes from making a tough diagnosis.

Rules and Regulations: Post your questions and diagnosis in the comments section below. The winner will be contacted. Reader comments may also appear in a coming issue of The New York Times Magazine.

How Much Do You Want to Know About Your Cancer?

Photo

Credit Stuart Bradford

Your appointment is at 2:00 on a Tuesday afternoon. It’s your first visit to the cancer center. You’re probably wondering what we are going to say to you. A tumor was recently detected in your left lung and has spread to your bones and liver. A biopsy was performed.

We’re meeting you for the first time, soon after your primary care doctor, or surgeon, has sat down with you, or called, to tell you some terrible news: You have cancer.

We are the oncologists, and we want to help. We want to discuss your diagnosis, what it means and what the options are for treatment. We’d like to give you a clear map of what your life might look like over the next few months as we fight along with you to minimize the amount of this awfulness, even if temporarily, from your body. We want to answer all of your questions.

But one of the biggest problems we face is that we often can’t figure out what our patients would like to know about their prognosis.

Even when we ask.

Spoiler alert: Despite all the exciting stories about progress against cancer that you’ve heard about in the news, there is no cure for most types of cancer once they have spread to other organs. On average, people with lung cancer like yours that has metastasized live another 18 months.

How much of this do you want to know?

It’s a lot to take in. Two months ago you felt fine, and now you have a life expectancy of one to two years. It’s probably the worst news you’ve ever been told. Next year is your 20th wedding anniversary, and your two teenage children don’t even know yet that you are sick. So in many ways, our lament is completely unfair – it’s on us to determine the right time to discuss prognosis.

What can we do to help?

We have all the facts at our fingertips: average survival; likelihood of being alive in five or 10 years; likelihood that chemotherapy will work; and even how long it might work. We will try to put the information in context, adjusting it for your particular situation, and be sure to emphasize that the data were developed in a specific population of patients and may not apply to you as an individual.

Oh, did you not want to hear numbers?

We can roll with that.

We can speak in generalities. We can use phrases such as “likely to be effective” or “most of the time.” We can say, “some people” or “live for years.” Or months.

If that’s what you’d like. But what we don’t want is to be one of “those” doctors.

You know what we mean. The doctors who never talk to their patients about likely outcomes, or life expectancy, and who don’t prepare them for the inevitable. One of us conducted a study in 348 patients with bone marrow cancers in which 35 percent of those patients reported never having discussed prognosis with their doctors. In another study, 74 percent of a similar group of patients estimated their chance for cure to be greater than 50 percent, while their doctors estimated the chance for cure in that same set of patients to be less than 10 percent.

We will do anything to avoid your returning to us with the regret, “I didn’t have time to plan.” Or your widow writing a letter to castigate us with “You never warned me.”

We want to give you time. We want to warn you. Sometimes we advise you to talk to your children’s teachers so that they know there is a crisis at home. Or to put your affairs in order. But often, we just can’t figure out what you want to hear.

And we get it. We would be just as blown away at a cancer diagnosis, and would have just as much difficulty processing all of the information. When we look into your face and really try to connect with you, to read your emotions, we often see fear. And sadness. And regret. And disbelief. And sometimes hopelessness.

We want to give you hope.

At the very least, we don’t want to dash your hopes. We’ll focus on the positives, the best-case scenarios. We’ll tell stories about some of our superstar patients, the poster children for cancer survival, the ones who ignored the statistics and have lived to brag about it.

But we need to place that hope in the staid court of likelihoods. After all, we aren’t hucksters. This balance, between hope and honesty, remains an uneasy truce in medicine. We want you to believe us, to trust us. We recognize that, in some ways, you are placing that most precious of possessions, your own life, in our hands. And we view this as a sacred bond: We will earn your trust by always speaking the truth, though not necessarily all of it.

The inescapable fact is that a tragedy is unfolding and we’re the bearer of the news. A life will be cut down prematurely, young children will be left without one of their parents, a spouse will be left on his or her own. It’s unfair and we can’t stop it. We wish we had more to offer and believe us, the enormity of the tragedy often makes us weep. And yet, our sadness probably doesn’t help you.

So please tell us. How much would you like to know?

Dr. Mikkael Sekeres is director of the leukemia program at the Cleveland Clinic. Follow him on Twitter @MikkaelSekeres.

Dr. Timothy Gilligan is the director of coaching, Center for Excellence in Healthcare Communication, at the Cleveland Clinic.

Doctors Getting ‘Pimped’

Photo

Credit Earl Wilson/The New York Times

“Name the five brachial plexus roots,” a senior doctor commanded.

I’d spent hours memorizing the anatomy of the arm and shoulder that week. But now — in front of a small audience of patients, nurses and medical students — I squeaked out just four.

“What trunks do they give rise to?” he continued.

Oh boy. It wasn’t going to stop. Whatever the nerves’ configuration was, currently their main function was helping me knead my sweaty palms together. Mercifully, he shifted to another student to solicit what divisions the trunks split into.

My teacher was “pimping,” a core aspect of teaching on the hospital floors. The term, said to be derived from the German coinage pumpfrage, for “pump question,” refers to asking students a rapid series of questions, from thought-provoking and relevant to esoteric and unanswerable. It continues until teachers run out of questions, or doctors in training run out of answers. I’ll let you guess which usually comes first.

As a medical student, I was a frequent pimping recipient. Now, as a second-year resident, someone who both supervises and is still supervised, my relationship with it is more complicated: I find myself both dispensing and dodging questions. (When I do “pimp” others, I try to be gentle.)

Pimping has spawned many creative defense mechanisms, ranging from avoiding eye contact to pretending to choke. Some students use the “politician’s approach”: answer the question you want, not the one you’re asked. My favorite strategy is the “muffin technique,” whereby you hold a muffin close to your mouth so the questioner thinks you’re about to take a bite. If you’re pimped anyway, then, obviously, pretend to choke.

But medical training’s emphasis on demonstrating how many facts we know — typically in front of colleagues, nurses, patients and families — is problematic. It encourages us to learn to show, not grow — to project confidence, and dismiss uncertainty.

In her research on educational development, the psychologist Carol Dweck outlines two models for intellectual growth. Students who view intelligence as a fixed entity want to prove themselves and avoid looking unintelligent. Because they see intelligence as a stable trait, they avoid difficult tasks and treat failure as a threat. By contrast, students with a growth mind-set view intelligence as malleable. They’re more concerned with process than outcome and treat failure as an opportunity. Importantly, these mind-sets are not immutable. Educators can substantially influence the approach students adopt.

Consider the following example. Let’s say I leave medical school and begin my residency thinking: I’m slightly weaker in rheumatology than other specialties. I can’t remember which antibodies predict which disease. On rounds, I don’t speak up or ask clarifying questions. When accepting new patients into my clinic, I shy away from those with diseases like rheumatoid arthritis and lupus. At the end of training, I think: I’m just not that good at rheumatology.

Consider an alternative scenario. I’m subpar at inserting central lines — threading a catheter into a large neck vein. On my first few attempts, I fail. My supervisor takes over and easily passes the catheter. But I don’t fear looking incompetent or accept my lack of skill as an innate deficiency. I study anatomy. I watch videos. I ask supervisors to page me before placing lines. When E.R. doctors ask if they should place one before transferring a patient, I say I’ll do it. At the end of training, colleagues ask for my help inserting difficult central lines.

The most important medical learning comes not from memorization and recitation, but by thrusting yourself into situations just beyond your comfort zone. This controlled stretching makes us better, but is anathema in a performance mind-set. Trainees in a growth mind-set, however, gravitate toward — not away from — challenging clinical experiences.

Research suggests senior physicians’ teaching styles influence whether trainees embrace growth or performance mind-sets. Residents with supportive supervisors are more likely to seek and incorporate feedback. And our training environment affects how we practice throughout our careers.

Our approach to medical knowledge and learning has important consequences for the education of new doctors — and profound implications for patient care. We wear factual knowledge as a badge of honor. We disguise and avoid uncertainty. But if we can’t embrace uncertainty with our peers, can we do so with our patients?

Being unsure about a patient’s diagnosis or how a disease might progress is inherently uncomfortable for doctors. Studies find that patients are less satisfied when physicians communicate uncertainty, but also that how doctors communicate uncertainty matters, and that in general we’re not very good at it.

But uncertainty remains an integral part of medicine. Even the most rigorous trials rarely answer the questions most important to doctors and patients: how to weigh risks and benefits; how a patient will respond to treatment; how long he or she has to live.

Research on communicating uncertainty is fledgling, but it does suggest that, at the very least, we need to recognize it exists, clarify its sources, and acknowledge its challenges for patients and families. Research also suggests that younger physicians are less comfortable disclosing uncertainty to patients, but that our attitudes can evolve over time.

We’re educated in a model that demands certitude, confidence and rightness. But we work in a profession imbued with uncertainty. Ultimately, training doctors to grow — instead of show — may lead to more curious physicians, and more honest patient interactions.

 

Dhruv Khullar, M.D., M.P.P., is a resident physician at Massachusetts General Hospital and Harvard Medical School. Follow him on Twitter: @DhruvKhullar.

Bad News Delivered Badly

Photo

Susan Gubar

Susan GubarCredit Vivienne Flesher

My friend Dana had become alarmed at a canker sore under her tongue: “a white patch, the size of my pinkie fingernail.” Canker might be cancer, she immediately suspected, possibly signaling a recurrence of her endometrial disease. She called an ear, nose and throat practice and made an appointment for what turned out to be a biopsy.

A week later, a nurse phoned to read the pathology report: “Superficial fragment of moderate to severe dysplastic squamous epithelium, cannot rule out invasive squamous cell carcinoma.” Although Dana urged her to define these terms or explain their significance in this particular case, the nurse resisted, stating that the doctor would explain them in a follow-up appointment the next week.

Needless to say, Dana immediately went online where the definitions did not comfort her. At bedtime, she wept herself to sleep, worrying that she would again lose 15 pounds in radiation, imagining her tongue cut out, brooding over a recurrence and her father’s earlier vocal cord cancer, grieving over putting her children and husband through yet another round of treatment. Finally at the appointed consultation, the doctor said the patch was “probably not cancer.” The pathologists were just “covering themselves” by saying they could not it rule out. She was incensed at having been put through unnecessary distress.

As any medical practitioner knows, uttering the words “severe,” “invasive” and “carcinoma” to a patient in remission cannot but escalate terror. Why couldn’t the nurse or the doctor find the ways and means immediately — in a brief phone call or email — to put those fears in perspective?

Given the paperwork, the patient load, and the long hours of medical professionals, we all understand the constraints within which physicians and nurses operate. Surely neither the nurse nor the doctor was willfully unfeeling. However, their tardy and cryptic announcements resulted in callous care. Whether a medical judgment is optimistic or pessimistic, its inept conveyance can upset or infuriate already anxious patients.

Some of the women in my support group were alone, groggy from anesthesia, and in pain when a poorly articulated diagnosis of gynecological cancer unhinged them. After a debulking operation, Julia recalls, a resident involved in the surgery stood near the door, avoided eye contact, and declared, “Stage 3 — we’re not talking cure now, we’re talking treatment.” When I heard similar words, I was in a crowded emergency room with only a privacy curtain between me and other patients.

Julia, a practicing therapist, believes that “these events are so traumatic that medical professionals need to look out for our emotional welfare . . . to reduce the possibility of PTSD. The person in a life-threatening emergency needs specialized mental health care.” Upon hearing a diagnosis of cancer, patients can plummet into the depressing supposition that their life is effectively over and their rapidly impending death will be painful.

Another very private member of our group — I will use her initials, I.M. — suffered through a delay between intimations of bad news and a diagnosis. After a CT scan, a hospital technician warned I.M. that she might have cancer, but he did not have the authority to discuss the matter with her. She would have to wait until her gynecologist could meet with her — the longest and most harrowing period in her life, she said with a shiver.

None of us were eased by communication strategies that have evolved since 2000 when Dr. Walter F. Baile and his associates published their paradigm for delivering bad news in The Oncologist. This article advocates a program called Spikes: S stands for finding the appropriate setting; P for gauging the perceptions of the patient; I for obtaining the patient’s invitation to hear bad news; K for providing the knowledge that the patient needs to receive; E for dealing with the emotional reactions of the patient with empathy; S for concluding with a needed summary.

Despite such a thoughtful template, miscommunication does not taint only diagnosis, as I.M. realized when she went on to confide about a more recent exchange. At her last meeting with her oncologist, they had discussed the sorry fact that the current cycle of chemotherapy had not inhibited tumor growth. The doctor gave her three choices: returning to the drug used in her first cycle, trying a clinical trial or “opting to do nothing.” Alarmed and shaken by this last proposal, she felt as if he were throwing up his hands or she had somehow been fired.

Because the members of our group had visited a hospice facility, we could assure her that she need never choose “opting to do nothing.” Even when patients decide that the struggle to combat cancer will be ineffective, they can gain access to palliative specialists who will alleviate pain and anxiety while rescuing them from pointlessly aggressive, time-consuming, expensive and debilitating treatments.

It cannot be easy for oncologists to deliver bad news so frequently, but it must be worse for them when they deliver bad news badly. The manners of patients erode as we become maddened by confusion and dread. Injurious words should never add insult to the injuries medical professionals witness and patients suffer daily.

Related:

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Why Does the Physical Exam Stop at the Navel?

Photo

Credit Getty Images

Photo

Danielle Ofri, M.D.

Danielle Ofri, M.D.Credit Joon Park

Recently a young woman came to my office. She hadn’t seen a doctor in several years and requested a checkup. The bulk of the annual physical isn’t the physical at all — it’s the talking, and we discussed diet, exercise, sleep, mood, alcohol, drugs, smoking, sunscreen, vaccinations, contraception, safe sex. In the last few minutes, however, I did turn to the physical exam.

I proceeded the way I do all my physical exams: I start with the eyes, ears and mouth and methodically work my way south — checking the lymph nodes and thyroid of the neck, listening to the heart and the lungs, percussing the abdomen, all the way down to feeling the pulses near the big toe.

Except that there’s one gaping divide in that north-south trajectory. Like most internists, when I get to the navel I skip down to the knees.

There is something faintly preposterous about doing a “complete physical” and then proceeding to hopscotch past a few key organ systems – especially for those of us in the primary care fields, who pride ourselves in taking care of the “whole patient.” We refer our female patients to the gynecologist for their regular preventive care, while our male patients might get sent to the urologist. It’s like our patients are Humpty Dumpty, and the pieces are divvied out between different medical fields.

When I started out in my medical practice, I vowed not to be the kind of doctor whose physical exam ends at the navel. Why should my patients have to see two separate doctors to get a complete exam? In my first years of practice, I did pelvic and breast exams for all of my female patients as part of their regular medical care. In the days before electronic medical records, I kept one of those heavy green laboratory notebooks in my desk to note of all the Pap tests I had done so that I could follow up with the patients when the results became available.

My patients were thrilled with this arrangement. Although I always offered a referral to gynecology, not a single one chose it. To a one, they preferred that their care be completed in one visit instead of two. I felt good too — I was offering comprehensive primary care for my patients and not overloading my swamped gynecology colleagues with these routine exams.

But while the pelvic exam doesn’t take that long, it does take time, and equipment, and a chaperone. My practice grew busier and it became harder to fit in all the moving parts. Unlike the gynecology clinic that was set up for these exams and the record-keeping, the medical clinic was not, so I was always scrambling on my own.

And after a few years, I simply could no longer manage it all. I regretfully retired my green lab book and speculums, and began referring my patients to gynecology, just like all the other internists. I was disappointed and so were my patients. We’d taken a step backward in comprehensive care.

Over the years, my guilt has been assuaged somewhat by guidelines that now recommend less frequent Pap tests and pelvic exams. Many of my patients for whom I performed an “annual Pap” no longer needed it, though I still feel a pang of guilt about shirking these parts of the body.

The young woman I was seeing that day was actually due for a Pap test — it had been more than three years since her last one. But with three more patients already checked in and waiting to be seen, I simply didn’t have the time.

I’d just read a recent study in the Annals of Family Medicine showing that comprehensive medical care is associated with lower costs and fewer hospitalizations. The study had some limitations, but it reinforced what most doctors and patients intuitively understand: fragmented care is worse for everyone and costs much more. I felt terrible that I was about to contribute to the fragmenting of care for this patient.

But our system is set up to favor fragmentation. It’s so much easier to write a referral to a gynecologist than to do a pelvic exam myself. It’s far quicker to refer to a rheumatologist than to figure out which complex tests to order, and then have to follow up on the results and figure out what they mean. It’s much simpler to refer to a neurologist than to take the time to figure out if a patient’s dizziness is serious or not.

In our current environment, being “comprehensive” just means more work for the primary care doctor. No one is allotting more time for this work or reimbursing for these extra efforts, so it’s no wonder that most patients leave their doctors’ offices with a fistful of referrals.

Regretfully I handed my patient a referral to gynecology, and I apologized for not being able to do the exam in my office. But she was entirely sanguine about it. She was used to going to separate places to care for her different organ systems, so this didn’t strike her as odd at all.

To me, that was perhaps the saddest part of all, that our patients are so accustomed to fragmented care that they no longer think of it as a problem. Fragmented care has become the norm.

There are efforts under way to change the way we deliver care, particularly with the concept of the patient-centered medical home. The goal of a medical home is that all of a patient’s medical services would be located in a single place with a coordinated team. Rather than have the patient run from one place to another, the care would come to the patient, and there are financial incentives to keep care centralized and comprehensive.

But we’re trying to build these medical homes on top of a deeply rooted and deeply fragmented infrastructure, so progress right now is measured in baby steps. We’re a long way off from putting Humpty Dumpty back together again, but I’m staying hopeful.


Danielle Ofri’s newest book is 
What Doctors Feel: How Emotions Affect the Practice of Medicine. She is a physician at Bellevue Hospital and an associate professor of medicine at N.Y.U. School of Medicine, as well as editor in chief of the Bellevue Literary Review. She spoke on Deconstructing Perfection at TEDMED.

Giving New Doctors the Tools They Need

Photo

Credit Early Wilson

They say if all you have is a hammer, everything looks like a nail. I wonder, then, why my toolbox often seems so inadequate for fixing my patients.

I open one recent afternoon in clinic with a middle-aged man I’ve come to know well. He’s drunk. His breath smells of alcohol and he slurs his words. He tells me his brother’s in jail, his mother died, and he punched a neighbor who tried to steal his wallet. In the past year, he’s been admitted to the hospital countless times for everything from falling to getting injured in a fight to failing to take his medications.

“High risk for readmission,” an automated email plops into my inbox each time he’s admitted. Thanks, I’m on it.

I search for mental health and substance use resources we haven’t yet exhausted. I speak briefly with a psychiatrist and case manager and a social worker who is arranging transportation back to the housing he’s in danger of being thrown out of.

“Maybe we increase his mood-stabilizer?” I offer, mostly just to say something. When all you have is a hammer…

The afternoon doesn’t get easier. I see a patient whose heart failure had been in good control with a telemedicine service that had checked his weight at home and adjusted his medications accordingly. But the service has been cancelled, and now he’s in our clinic, gasping for air as fluid fills his lungs.

He’s followed by an older man who’s been on opioid painkillers for a decade — and who I now suspect is selling extra pills on the street. I’m running 45 minutes late by the time I greet an understandably frustrated woman who, a computer alert informs me, is overdue for her first colonoscopy. She balks when I bring it up, and I don’t have the words or the time to convince her otherwise.

The afternoon was not unusual. At the end of most days, I find myself searching for nails that I can hammer.

Part of the problem is the tool kit we assemble during medical training. We’re educated largely in a biomedical framework. We diagnose disease with textbook knowledge and prescribe medications because those are the hammers we have.

But consider the skills I would need to be more effective in just this one clinic session: understanding social issues that contribute to health; marshaling support resources like case management, social work and rehabilitation centers; exploring my patients’ values and goals and encouraging behavior change; leading interdisciplinary care teams; employing new technologies and methods of patient engagement like telemedicine; and appreciating how health systems fit together to influence an individual patient’s care — from home care and community centers to clinics and hospitals. None have traditionally been emphasized in medical education — and, unsurprisingly, doctors in training like myself are often ill-equipped to practice in today’s health care environment.

Medicine has long been a discipline predicated on memorization, which made sense in a world of textbooks, microscopes and information monopoly. But rooting medical training primarily in knowledge acquisition is increasingly insufficient and inefficient. In an era of big data, Google and iPhones, doctors don’t so much need to know as they need to access, synthesize and apply. We’re increasingly asked to consider not just patients, but communities. We’re expected to practice not as individuals, but as team members. And now — liberated from carrying every diagnostic and treatment detail around in our heads — we have both the responsibility and the luxury of deciding what a doctor should be in the 21st century.

Some medical educators are trying to figure it out, with a greater emphasis on new technologies, collaborative care, wellness and community health.

The new Dell Medical School at the University of Texas, Austin, which enrolls its first class in June, is hoping to revolutionize medical education. The school plans to focus on helping students understand how health systems, communities and social issues contribute to individual health through a variety of innovative methods.

Instead of traditional lecture halls, Dell’s students will learn in collaborative workspaces with a curriculum that emphasizes team-based management of patients. They’ll take weekly classes with pharmacy, nursing, social work and engineering students. Dell’s “Innovation, Leadership and Discovery” program affords students an entire year to pursue projects related to population health and delivery system redesign.

Dell also features a unique collaboration with the university’s College of Fine Arts — known as the Design Institute for Health — to bring design thinking to health care. Here students will learn to think about everything from better hospital gowns and more hospitable hospital rooms to how patients access services online and how to make waiting rooms obsolete.

“It’s an incredible gift to start from scratch,” said Dr. Clay Johnston, the school’s first dean. “We can start by looking at where the biggest gaps and problems are. Then say, O.K., given those needs, what should doctors and the medical system look like in the future?”

The health system Kaiser Permanente recently announced its own plans to open a medical school in 2019, in Pasadena, Calif. The medical school, like the health system, will emphasize integrated care, the latest medical evidence and new technologies like online doctor visits.

“We recognize the importance of providing care in alternate settings,” says Dr. Edward Ellison, who is helping to oversee the creation of the school. “We’ll take care of you when you’re sick. But we’ll also help you stay healthy when you’re home.”

While most medical schools are trying to get students out of lecture halls and into hospitals, Kaiser Permanente hopes to get students out of hospitals and into communities. Students will visit patients in their homes to see how they live and what behavior change looks like in living rooms instead of hospital rooms. They’ll also be trained as emergency medical technicians — riding in ambulances alongside other medical professionals, responding to accidents, violence and trauma in their communities.

The American Medical Association, for its part, has provided over $11 million to established medical schools to reimagine their curricula and better prepare students for a rapidly evolving health care environment.

Older physicians, medical educators, policy makers and patients will continue to debate what doctors should be taught and what they should know. But the deeper question is how doctors can learn to think — to solve problems that can’t be solved with the tools we currently have. Because ultimately, there’s no better hammer than that.

Dhruv Khullar, M.D., M.P.P. is a resident physician at Massachusetts General Hospital and Harvard Medical School. Follow him on Twitter: @DhruvKhullar.