Tagged Hospitals

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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How Older Patients Can Dodge Pitfalls Entrenched In Health Care System

Being old and sick in America frequently means a doctor won’t ask you about troublesome concerns you deal with day to day — difficulty walking, dizziness, a leaky bladder, sleep disturbances memory lapses, and more.

It means that if you’re hospitalized, you have a good chance of being treated by a physician you’ve never met and undergoing questionable tests and treatments that might end up compromising your health.

It means that if you subsequently seek rehabilitation at a skilled nursing facility, you’ll encounter another medical team that doesn’t know you or understand your at-home circumstances. Typically, a doctor won’t see you very often. In her new book, “Old & Sick in America: The Journey Through the Health Care System,” Dr. Muriel Gillick, a professor of population medicine at Harvard Medical School and director of the Program in Aging at Harvard Pilgrim Health Care Institute, delves deeply into these concerns and why they’re widespread.

Her answer: a complex set of forces is responsible.  Some examples:

  • Medical training doesn’t make geriatric expertise a priority.
  • Care at bottom-line-oriented hospitals is driven by the availability of sophisticated technology.
  • Drug companies and medical device manufacturers want to see their products adopted widely and offer incentives to ensure this happens.
  • Medicare, the government’s influential health program for seniors, pays more for procedures than for the intensive counseling that older adults and caregivers need.

In an interview, Gillick offered thoughts about how older adults and their caregivers can navigate this treacherous terrain. Her remarks have been edited for clarity and length:

Q: What perils do older adults encounter as they travel through the health care system?

The journey usually begins in the doctor’s office, so let’s start there. In general, physicians tend to focus on different organ systems. The heart. The lungs. The kidneys. They don’t focus so much on conditions that cross various organ systems, so-called geriatric syndromes. Things like falling, becoming confused or dealing with incontinence.

Q: What can people do about that?

Older people are often unwilling to bring these issues to the attention of their doctors. But if a family member is accompanying the patient, they should speak up.

In some practices, a nurse practitioner may be more attuned to these issues than the physician. So, it’s a good idea to learn who in the medical office you go to is good at what.

Another approach is to request a geriatric assessment or consultation that will bring these issues to the forefront.

Q: How do geriatric assessments work?

A geriatric assessment does two major things. It looks at the whole person. And it focuses on that person’s functioning — on what they can do. Can they dress themselves, walk, get to the bathroom? Can they cook meals? Take a bus downtown? Balance their checkbook?

An outpatient geriatric assessment is typically 1½ to two hours and conducted by an interdisciplinary team. A social worker or a mental health professional will ask about the person’s family situation. Are they living alone? Do they have support? A nurse practitioner will look at physical function. And a physician will go over medical concerns and examine the cognitive performance of the individual. Then, the team pulls all these pieces together to look at what’s going on with that person.

When someone starts being frail — having consistent difficulty doing things — an assessment of this kind is often a good idea.

Q: The next step you talk about in your book is the hospital.

One of the big perils in the hospital is technology, which is also its great virtue.  Technology can improve quality of life and be life-extending. But, sometimes, it creates endless complications.

An example are imaging tests such as CT scans. Physicians hardly think of this as an invasive test. But often one has to administer a dye to see what’s going on.  That dye can cause kidney failure in someone with impaired kidney function — something that’s common in older adults.

Sometimes there’s no real need for scans. An example would be an older person who becomes acutely confused in the hospital, which happens a lot. The appropriate response is to look at what’s causing the confusion and take away the offending agent. Often, that’s a medication that was started in the hospital. Or, it’s an infection. But the routine knee-jerk reaction is to do a CT scan to rule out the possibility of a stroke or bleeding in the brain.

For the most part, doctors want to do whatever it takes to diagnose a problem.  For younger patients, this may make sense. But for frail older patients with multiple medical conditions, a cascade of complications can result.

Q: What do you advise older patients and their families do?

When a test is proposed, ask the doctor “how important is it to pursue this diagnosis” and “how will the results change what you do?”

It’s also reasonable to say something along the lines of “every time I’ve had a test, it seems like I get into some kind of trouble. So, I really want to know, with this test or this treatment, what kind of trouble could I get into?”

Q: In your book, you talk about how a doctor-patient relationship can be sidelined when someone goes to the hospital. Instead, hospitalists provide care. How should people respond?

It’s really important to give that doctor a sense of the patient and who they are.  Say, your 88-year-old mother is in the hospital, and she’s become profoundly confused. The doctor doesn’t know what she was like a week or a month ago. He may assume she has dementia unless he hears otherwise. He won’t understand it might be delirium.

You or a caregiver want to come across as someone who can make it easier for the doctor to do his or her job — versus someone who’s a nuisance. You want to build trust, not annoyance.

Q: What about skilled nursing facilities?

These are settings that people go to after the hospital, to get rehabilitation.  Typically, the contact with doctors is minimal after an initial evaluation, though there’s a spectrum as to how much medical care there is.

A subset of older adults go to rehab just to get physical therapy after they’ve had a joint replacement or a hip fracture. They are really pretty stable, medically. If they get good physical therapy and nursing care, it’s probably OK that the doctor isn’t around much.

But there are also older patients who come to skilled nursing facilities, or SNFs, after having had one complication after another in the hospital. These patients can be very fragile, with many medical problems. They’re at risk of getting some new problem in the SNF — perhaps an infection — or an exacerbation of one of the problems they already have that hasn’t resolved.

Q: What do you recommend?

When you arrive at an SNF, it’s a new cast of characters. A physician whom you’ll see fleetingly. Nurses. Physical therapists. Aides. If you’re a caregiver, make sure you have face-to-face time with these staffers.

SNFs are required within the first week or so to have a care planning meeting with the team. They’re supposed to invite patients and their representatives to the meeting. This is a good place to say something along the lines of “My mother has been through a lot, and now that we’ve met you and seen what you can do, we’d like you to do your best to treat her here and not send her back to the hospital.”

You have to have trust to make that happen. The family has to trust the medical team. And the team has to trust that the family isn’t going to get upset and sue them. A meeting of this kind has the potential to allow everyone to figure out what’s important and what the plan will be going forward.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

KHN’s coverage related to aging and improving care of older adults is supported in part by The John A. Hartford Foundation.

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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.

Photo

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.

In a Hospital, Health Care Until the Clock Runs Out

Photo

Credit Jordin Isip

A 37-year-old man was admitted to a hospital several months ago with seizures. His M.R.I. was frightening, showing a brain full of holes. Medication controlled the seizures, but the drugs were just Band-Aids on a big, undiagnosed problem.

The patient was not particularly alarmed (which in itself was fairly alarming). His brain was riddled with infection or tumor, but all he wanted to do was get out of the hospital and go back to his life.

By all accounts, it was a troubled, isolated, drug-ridden existence in a fleabag hotel, a life free from anything resembling regular medical care. Still, he was ready to be on his way.

The only way to diagnose his problem was a brain biopsy. “Anything to get out of here,” the patient said, and signed a consent form.

The biopsy was performed uneventfully, and small specimens of the abnormal tissue were sent to the lab for a diagnosis. That was on a Friday.

By Monday, everyone was ready for an answer. By Tuesday, it was hard to tell who was more impatient, the patient pacing the hallways or his doctors pestering the lab.

On Wednesday, with the specimens still being processed and another weekend looming, the case had attracted the notice of the administrators known in hospital vernacular as the discharge police.

Within minutes, it seemed, the patient was out of that expensive acute-care bed and on his way to the subway, clutching a thick sheaf of instructions, appointment slips and prescriptions, still without a diagnosis, brain full of holes, but free at last.

Your reaction to this story will almost certainly depend on your understanding of the word “hospital.” The word has connotations of care and comfort dating to the Middle Ages, but its meaning is changing so quickly that even the people who work in one cannot agree on what it is.

Once hospitals were where you found a doctor when you suddenly needed one; now doctors are all over the place, from big-box stores to storefront clinics. Hospitals were where you were headed if you were very sick; now you can heed your insurer’s pleas and choose a cheaper emergency center instead.

Hospitals were where you stayed when you were too sick to survive at home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

Once hospitals were where you were kept if you were a danger to yourself or others. They still serve this function — although, perhaps, the standards for predicting these dire outcomes have tightened up quite a bit.

These days, it may be easier to define hospitals by what they are not. They are not places for the sick to get well, not unless healing takes place in the brief interval of time that makes the stay a compensated expense.

Hospitals are definitely not places for unusual medical conditions to be figured out, not if the patient is well enough to leave.

Like the hospital, the patient with holes in his brain was also a puzzle of ill-defined words. He was very sick, yet not all that sick. Whether he could survive at home depended strongly on the meaning of “survive” and “home.”

He was well enough to be an outpatient, but he was far from well, and had never managed to be a successful outpatient. He was not suicidal, at least not in any immediate sense. The big holes in his brain made it even less likely that he would adhere to the complicated instructions for his new outpatient life.

But then again, a hospital is a place where hope reliably springs eternal.

The patient’s young doctors certainly hoped for the best for him. They gave him a slew of prescriptions, and expressed their hopes that he would take the pills and keep his far-flung appointments, at one of which his brain biopsy report would be retrieved and his medications adjusted accordingly.

Not so long ago, the multiple ambiguities of this patient’s case would have kept him in the hospital until at least some of the uncertainty had been resolved. In fact, it would have been considered close to malpractice to let a patient like him out the door. Now it is considered downright medieval to keep him in.

I’m sure you would like to know what happened to the patient. His doctors would, too, but he is missing. His phone goes unanswered. The name of an emergency contact is blank in his records — he refused to provide one.

It’s anyone’s guess if he filled his prescriptions. He kept none of the appointments made for him.

The results of his biopsy showed a perfectly treatable condition, an infection that the pills he was sent home with should have helped. Perhaps he got better, perhaps not.

The young doctors will never know if they managed his case correctly — that’s “manage” in its medical sense. In the word’s other senses (“succeed despite difficulty” among them), they now have a reasonably good sense of how they failed.

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.

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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.

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.

Picking Up an Infection in the Hospital

Photo

Credit Stuart Bradford

When the emergency room doctor pulled the blanket aside, looked at my elephant-size inflamed leg and said, “Whoa!” I knew that wasn’t a good sign.

Nor was the reaction of the emergency room nurse, who glanced down at my bizarrely swollen extremity, then started nervously backing away.

Health care practitioners are trained not to show their feelings, but there are clearly times when things look so bad that even they can’t hide their reactions.

I was in the emergency room at Los Robles Hospital in Thousand Oaks, Calif., because a few days earlier I had undergone what was supposed to be a relatively straightforward outpatient procedure to remove a skin growth on my leg. A couple of days after the surgery I felt fine. The surgeon told me I could drive whenever I was up for it, so we took our grandchildren to the Magic Castle in Hollywood. Running from room to room to see the different sleight-of-hand acts, I no longer felt fine. Now I felt a searing knife-like pain in my leg, which soon began to swell in size.

I went back to see my surgeon, who looked a little concerned. You have an infection, she said. Take these two antibiotic pills, schedule a Doppler scan for the next day, and all should be well.

That night, my leg got even bigger; from the waist down one side of me looked like I weighed 350 pounds (I’m not even half that.) My wife and I spoke to the surgeon, who was vague. “You could go to the E.R. if you want,” she said. “Or wait.”

I went and was admitted immediately. That night, a Doppler study showed no life-threatening blood clots. With no beds available, I was kept in the emergency department overnight, taking catnaps while trying to blot out the screams and moans from down the hall, before being given a room, and intravenous antibiotics, the next morning.

“This is very serious,” said Dr. Barry Statner, the infectious disease specialist who came to see me the next day in my hospital room. “We’ll cure you,” he said while firing questions at me about my medical history. “But you need to know, this is very serious.” I wondered if I was going to lose my leg.

For the first time in my life, I had entered the world of the powerless sick. Like most people, I had long heard about the dangers of contracting infections in hospitals or surgical centers, but I never took them seriously. I assumed that, except for the worst cases, such as those caused by improperly disinfected scopes and other instruments, they were little more than a minor annoyance.

In fact, infections kill, and they do so regularly, even to people who are otherwise healthy.

“There are diseases that can take a regular healthy person and destroy them within hours,” Dr. Statner told me. “You don’t get a second chance. People don’t realize how rapid and lethal infections can be.”

In the United States in 2014, one in 25 patients contracted a hospital-borne infection on any given day, according to the Centers for Disease Control and Prevention. Some 722,000 Americans developed such infections in hospitals in 2011, and about 75,000 died during their hospital stay.

I count myself as somewhat lucky. My wound was infected with a relatively run-of-the-mill strain of Staphylococcus aureus, and after a week in the hospital, followed by two weeks hobbling around the house, where a nurse visited daily to pack my wound with prodigious amounts of gauze, I was on the road to recovery. I was fortunate it wasn’t one of the more serious infections that lurk around hospitals, like MRSA, a “super bug” strain of Staph that is resistant to most antibiotics, or C. difficile, which can cause months of relapsing and severe diarrhea.

No one knows how my infection happened. It was the first, and only, case of this type of infection at the surgical center that year, I was told by Dr. Richard Hoberman, the medical director and the anesthesiologist who had put me under general sedation during my surgery. Clearly shaken by what happened to me, he unexpectedly popped in to my hospital room early in my stay to apologize.

My infection resulted in my being “the subject of several very uncomfortable meetings with the hospital administration” and a five-page written report, Dr. Hoberman said. (They passed on sharing a copy of that report with me.)

Hospitals are anxious to reduce hospital-borne infections, to reduce deaths and improve their reputations. There are also immediate financial incentives: Medicare may penalize hospitals for infections acquired in the facility.

The medical center I’d gone to for my surgery, associated with Los Robles Hospital, practices all the well-known standard forms of infection prevention: constant washing of hands; sterilizing equipment; giving patients preoperative antibiotics; cleaning operating room surfaces and thorough cleaning at night. In addition doctors are not allowed to enter the operating room wearing the same scrubs they wear in the street. To prevent the spread of microbes, cellphones and jewelry are banned, as well as ties.

But infections still happen. While most infections happen at the time of surgery, according to Dr. Statner, they can occur in the hospital room as well. A break in the skin, a lapse in the handling of a paper surgical cover, lackluster cleaning, intravenous lines or catheters that remain in too long — all can result in infection.

In the end, stamping out infections depends on the vagaries of human behavior. “Medical care is done by people. There can be gaps in quality. People must remember to do certain things,” said Dr. Arjun Srinivasan, the associate director for health care associated infection prevention programs at the C.D.C.

“Far too many Americans get sick in the hospital,” said Dr. Thomas R. Frieden, director of the C.D.C. “The importance of making care safer cannot be overstated.” One limitation is that the C.D.C. can only recommend, not mandate, practices to reduce infection, he said. And because hospitals are owned by various corporations, it can be a challenge to know how effectively patients are being protected in any one hospital. If a patient is moved from one hospital to another across town, he said, it “can cause problems,” given that one hospital may have less rigorous infection-reduction policies than another.

Hospitals are experimenting with new disinfection techniques. For example, some disinfecting machines using ultraviolet light are so powerful that no one is allowed in the room when they are in operation. And routine measures like thorough hand washing, and having patients thoroughly shower using chlorhexidine before surgery is helping bring infection rates down in the United States in recent years. In the three to six years before 2014, depending on the type of infection, the rate of surgical-site infections has dropped by 17 percent, C. diff by 8 percent and hospital-borne MRSA by 13 percent, according to the C.D.C. However, there was no change in the rate of urinary tract infections caused by catheters between 2009 and 2014.

Infection rates have dropped even more steeply in Britain, where total MRSA reduction from 2004 is now 80 percent, according to Dr. Mark Wilcox, the head of medical microbiology at Leeds Teaching Hospitals and the head of the C. difficile task force for Public Health England. Leeds Hospital used to see 15 to 25 MRSA infections per month; now it gets five per year, he said.

Dr. Wilcox attributes their success in part to having a coordinated, single health system for the entire country. To encourage hygiene, National Health Service hospitals post current infection rates on boards that can be seen by doctors, patients and visitors. Hospitals are “obsessional” about hand hygiene, Dr. Wilcox said. To do the best cleaning job, health workers must be “bare below the elbows,” with no watches on the wrist. Lab coats, while making a doctor look professional, are also banned, as they can brush up against patients and transfer bacteria from one patient to the next.

Hospitals that fail to meet infection reduction targets are visited by a “hit squad improvement team” that demands a new plan, Dr. Wilcox said. Those that fail lose the right to decide how to spend some of their annual budget.

“A decade ago, people would say that only a small proportion of infections are preventable,” said the C.D.C.’s Dr. Srinivasan. “Now we know that a large proportion are preventable. We’ve turned that paradigm on its head.”

Think Like a Doctor: Sick at the Wedding Solved!

Photo

Credit Anna Parini

On Thursday, we asked Well readers to take on a challenging case. A 38-year-old man who traveled to the mountains of Colorado for his brother’s wedding suddenly became ill. He had fevers and chills, chest pain, a severe headache and a sore throat. There was so much going on that it was really tough to see what might be underlying it all. More than 400 of you offered your diagnoses, but no one got it completely right. I had to choose two winners, each of whom was the first to get at least part of it right.

The correct diagnosis was:

Lemierre’s disease caused by an invasive strep infection

One of the winning answers came from Dr. Hediyeh Baradaran, a chief resident in the radiology department of Weill Cornell Medical Center. She recognized that an invasive strep infection could cause both the inflamed heart muscle diagnosed at one hospital and the abscess found at the other. She didn’t mention the Lemierre’s. That diagnosis was offered by Dr. Ariaratnam Gobikrishna, a cardiologist with Montefiore Medical Center in the Bronx.

The Diagnosis

In 1932, Dr. André Lemierre reported on 20 patients he’d seen who became ill with a sore throat and then went on to develop a clot in their jugular vein. The clot was infected with bacteria, and the disease spread from the jugular to the lungs, bones, brain and other organs when tiny pieces broke off, seeding the infection throughout the body. The illness came to be known as Lemierre’s disease, or syndrome.

Lemierre’s is rare, most commonly seen in teenagers and young adults. And it is frequently misdiagnosed, at least initially. In one study of hospitalized patients, a correct diagnosis of Lemierre’s was made, on average, five days after admission.

Most of the time the infection is caused by an unusual bacterium called Fusobacterium necrophorum, but it has been associated with other bugs as well. And no matter which bacterium caused it, in the era before antibiotics, Lemierre’s was practically a death sentence, with 90 percent of patients dying. Even now, it’s not a disease to be taken lightly. Up to 18 percent of patients will die of the infection.

However, it wasn’t some rare infection behind this man’s illness. Blood cultures drawn at Anna Jaques Hospital in Newburyport, Mass., where the patient went after returning home, revealed an underlying disorder that is much more common and much less feared: strep throat. There are millions of cases of streptococcal infections in this country every year, usually in the throat or on the skin. But in a tiny fraction of these cases, the bacterium will invade the surrounding tissues and cause a life-threatening illness, as it did with this man.

Both the Lemierre’s and the myocarditis were caused by this strep throat gone wild. This kind of invasive infection must be treated with antibiotics. This patient was taking an antibiotic, doxycycline, because the doctors were worried initially that he might be suffering from some kind of tick-borne infection, but that antibiotic is ineffective against most types of strep.

How the Diagnosis Was Made

After the patient’s flight back from Colorado to Boston, he had ended up in Massachusetts General Hospital, where he’d been diagnosed with myocarditis, or inflamed heart muscle. He began to feel a little better and returned home, but after a day he began to feel worse again. He was pale and sweaty, the way he’d been in the mountains. And the shaking and fevers were back. His headache was terrible, almost as bad as it had been in the hospital, where it had brought the man to tears — something his wife had never seen before.

The patient’s wife called Mass General several times with her concerns; the doctor who’d cared for the patient there suggested she take him to a local hospital. And that’s when she turned to her husband and gave him a choice: She could drive him to the hospital or she could call an ambulance, but he was going to go to the hospital – and he was going to go now.

At the Anna Jaques emergency room, the couple met Dr. Domenic Martinello. He heard their complicated story of traveling to Colorado and feeling sick, then returning to Boston and feeling sicker; then going to Mass General and getting a diagnosis of myocarditis, but not getting better. After a quick exam, Dr. Martinello decided to focus on the most prominent symptoms at that moment: the headache, the neck and throat pain, and the fever.

Scanning the Head and Neck

He would start with a CT scan of the head, he told the patient and his wife. And if that didn’t provide an answer, he would get a CT scan of the neck. And if he still had no answer, he would get a lumbar puncture, or spinal tap. One of those tests, he was certain, would provide the answer.

The head scan was completely normal. There was no tumor, no blood clot and no sign of increased pressure. That was important because Dr. Martinello suspected that the patient had some kind of meningitis, and if the scan had shown increased pressure, he wouldn’t be able to do a spinal tap. But as it turned out, a spinal tap wasn’t needed.

The emergency room doctor wanted the CT of the patient’s neck because it was swollen and tender. The patient had told him he had a sore throat, yet when the doctor looked in his throat he saw nothing. Could there be an abscess seeded deep in his oral pharynx from some earlier infection? Is that what was causing his throat and neck pain?

Photo

The arrow is pointing to a clot (darker gray) within the jugular vein (lighter gray).

The arrow is pointing to a clot (darker gray) within the jugular vein (lighter gray).Credit

It was the right question, though the result was not what Dr. Martinello expected. There was a small abscess. More worrisome, there was a blood clot in the patient’s jugular vein, on the patient’s right side. He had Lemierre’s disease, a rare infection that Dr. Martinello had seen only once before. You can see the clot in the CT image shown here.

Transferring to a Bigger Hospital

Now that Dr. Martinello knew what was making this man so sick, he was worried that his small community hospital was not prepared to care for him. They didn’t have the kind of specialists he needed on call 24/7. It seemed clear that the patient needed a hospital with more resources. So Dr. Martinello arranged for the patient to be transferred to a sister hospital, Beth Israel Deaconess Medical Center in Boston.

Identifying the Bug

Dr. Andrew Hale was the infectious disease specialist on duty the night the patient arrived at Beth Israel. When the patient and his wife arrived at the B.I. emergency department, Dr. Hale hurried to meet them. He spoke to husband and wife and reviewed their complicated history of the past week or so. But he also learned that both children had come down with strep throat while their father was at Mass General. It was an important discovery since, although unusual, it was well known that strep could cause Lemierre’s, He ordered another set of blood cultures and started the patient on broad-spectrum antibiotics.

Because the patient had been started on intravenous antibiotics while at Anna Jaques, there was a good chance that these cultures wouldn’t grow anything, but he needed to try. He also knew that Dr. Martinello had drawn blood cultures from the patient before he had started on the intravenous antibiotics, and was optimistic that these cultures would show what the bugs were. Identifying the bacteria that were causing the infection was important so that the antibiotics could be more narrowly targeted.

The cultures from Anna Jaques grew out Strep pyogenes, the most common cause of strep throat. The patient continued on antibiotics for six weeks and started a three-month course of a blood thinner to keep the clot from growing or spreading.

How the Patient Fared

That was a year ago. The patient is completely recovered. It was kind of funny, he told me recently. Even though his throat was painful, the sore throat seemed insignificant compared to the shaking chills, the fever, the headache. “I thought of it as kind of a sidebar, when in fact it was the main event,” he said.

Both he and his wife have read up on the illness and come up with a new family motto: Take strep seriously.

Pricing a Year of Life

Photo

Credit Stuart Bradford

A radio producer investigating cancer costs once asked me, “What is another year of your life worth?” During my flummoxed silence, she informed me that experts mention the figure $50,000. Can patients like me — older people with recurrent disease — estimate the expense of a future year of cancer treatment to decide whether it’s worth it?

I began to understand the origin of the number when my nephew sent me an article in The New England Journal of Medicine, “Updating Cost Effectiveness.” Its authors explain: “For more than two decades, the ratio of $50,000 per quality-adjusted life-year (QALY) gained by using a given health care intervention has played an important if enigmatic role in health policy circles as a benchmark for the value of care.”

Used by economists, the QALY calculates quality and quantity of life to judge the monetary worth of medical inventions. Since my cancer was diagnosed in 2008, I have wondered how to make this reckoning within our for-profit health system. So with misgivings I set aside the plight of the uninsured and began considering not generic measurements of cost-effectiveness but how much I — as an insured patient — had paid for one year of cancer treatment.

It turned out to be impossible. Never — during four years of operations, radiological interventions, and cycles of chemotherapy — had I been informed beforehand about the cost of any consultation, procedure, equipment or drug. Nor did I understand what would be covered by insurers and (when I got older) Medicare or what would have to be paid out-of-pocket.

After the consultation or procedure, I received impenetrable statements from providers, stamped in large letters, “This Is Not a Bill.” They were followed by cryptic printouts from the hospital that clearly were bills, although next to many entries the word “pending” appeared.

Now, given my erratic bookkeeping, I cannot calculate what I ended up spending.

The camouflaging of cancer costs poses an unprecedented problem. There is no analogue in life — including the approach of death — in which I remain so ignorant of expenditures. Although I have ascertained what cremation, a grave site, and a marker cost, I have no idea what the costs of my treatments amounted to.

During those same years, I could not predict treatment complications that required subsequent procedures and outlays. When an operation necessitated another, the bills multiplied. Humbled by my own unknowingness, I took to heart Kierkegaard’s insight that we must live life forward, even though it can only be understood backward.

Obviously, I was in neither the physical nor the psychological state needed to adjudicate the paperwork. Dazed, frightened and depleted by the alarming threat to my mortality and the debilitation of treatment, I demoted the bills to a nasty irritant. An excellent job with good benefits buffeted me from facing what less lucky people confront: a financial crisis triggered by cancer treatment.

Stints in the hospital enlighten many patients about prohibitive co-pays and costs above coverage ceilings for the large sums charged by surgeons, anesthesiologists, radiologists and oncologists; for operating and hospital rooms, tests and scans, medicine and equipment as well as a box of tissues. The title of an article in The Oncologist about the financial distress of insured patients speaks volumes: “The Financial Toxicity of Cancer Treatments.”

Add to these expenditures exorbitant out-of-network fees, the loss of wages resulting from treatment-related appointments and disabilities, the cost of travel to and from the hospital, and the need to hire child care or housekeeping or elder care assistance. All these combined payments can be staggering.

As for the new cancer drugs, pharmaceutical companies apparently charge whatever the market will bear. A new type of medication, a PARP inhibitor similar to the one I receive in a clinical trial, has been approved by the Food and Drug Administration for recurrent ovarian cancer patients. Lynparza, produced by AstraZeneca, costs about $11,000 a month. That would come to $132,000 a year. After a media flap a few years ago over Zaltrap — doctors at Memorial Sloan Kettering boycotted it, saying it was no more effective than a less expensive drug — its producers cut the price in half.

No wonder, then, that people with cancer are more likely to go bankrupt than other Americans. The authors of The New England Journal of Medicine article conclude that the QALY has been underestimated. For a single threshold now, they would suggest either $100,000 or $150,000 per QALY.

Whatever the estimate, a crude ratio of cost effectiveness, like the QALY, seems presumptuous. How can qualitative factors (nausea, fatigue) be converted into quantitative numbers? How can general calculations account for individual variations (my preference for fatigue over nausea) or overriding personal beliefs and principles about what constitutes a valuable existence?

Yet it would help patients like me to participate in sober public conversations on these issues since many of us are aware that individual decisions about medical costs sidestep vexing social questions of why they are inflated and how they will tax our children and grandchildren. At the least, more transparent communications would alleviate widespread fears that living life forward could trip us backward into penury.

For the past three years, the clinical trial in which I participate has covered most cancer-related expenses. When the drug in my trial fails, I want to have some say about whether another year of my life is worth the cost of treatment. But it will take a change in the current way of doing medical business to make that possible.

Related:

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Think Like a Doctor: Sick at the Wedding

Photo

Credit Anna Parini

The Challenge: Can you figure out what is wrong with a 38-year-old man who suffers from fevers, insomnia and night sweats after traveling to the mountains of Colorado to be his brother’s best man?

Every month, the Diagnosis column of The New York Times Magazine asks Well readers to try their hand at solving a real-life medical mystery. Below you will find the story of a 38-year-old marketing executive from the Boston area who suddenly becomes sick when he takes his family to his brother’s destination wedding in the Rockies. Within a day of their arrival, the man begins to feel sick, though the rest of his family feels fine.

As usual, the first reader to offer the correct diagnosis gets a signed copy of my book, “Every Patient Tells a Story,” along with that feeling of satisfaction that comes from solving a difficult but really cool case.

The Patient’s Story

“Either you are getting in the car with me to go back to the hospital, or I’m calling an ambulance,” the woman announced. “It’s totally up to you.”

Her husband, 38 and never sick a day in his life, had been desperately ill for more than a week. He’d just gotten out of the hospital that morning, and after being home for less than 12 hours he was worse than ever. Though she couldn’t bring herself to say it out loud, she was worried he might be dying. And though he didn’t say anything, so was he.

It had started at his brother’s wedding, one of those destination events in the mountains of Colorado. And almost from the moment he stepped off the plane, he’d started to feel awful. His head ached. So did his body. His eyes were puffy, and his whole face looked swollen. He couldn’t eat, and he couldn’t sleep. When he went to bed that first night, he tossed and turned, though he felt exhausted. In the morning, when he dragged himself out of bed, the sheets were soaked with sweat.

Just the Altitude?

At first he wrote it off as altitude sickness. The resort was 11,000 feet above sea level, and he’d never been this high up. Though his wife and the kids felt fine, there were others in the wedding party who were feeling the effects of the altitude as badly as he did. One of the bridesmaids fainted at the rehearsal dinner. And an elderly aunt had to leave before the wedding.

The day of the wedding it snowed – in May. The kids were thrilled. His wife took them sledding. He’d spent the day in bed, trying – mostly unsuccessfully — to get some sleep. That afternoon the wedding service seemed to last forever. The tuxedo felt like a straitjacket. There was a pressure in his chest that made it hard to breathe. But he’d stood at the front of the church, proud to be best man to his younger brother.

After the service, the photographer led them outside, trying to capture the spring blossoms covered with snow that made the setting so extraordinary, and he worked hard to exhibit an enthusiasm he was too sick to feel.

By the time he made it to the dinner reception, his whole body shook with violent chills, and his head was pounding. His collar felt so tight he could hardly swallow. He’d been working on his toast for days, so his wife talked to the D.J. and changed the order of the toasts so that he could give his toast early. After completing it, he made his apologies, went back to the hotel and climbed into bed.

Feeling Worse and Worse

He figured he’d feel better when they got to the lower altitudes of Denver, where they’d arranged to spend their last night. But he didn’t. Even when he traveled back to Boston, down at sea level, he didn’t feel any better. He had some business in the city so was staying at a hotel while his wife took the two kids back to their home, an hour away. She was worried but he reassured her he’d be O.K.

But that night, alone in his hotel room, he felt so bad he began to get scared. If this was altitude sickness, he should be better by now. Everything he read on the Internet said so.

Finally he could take it no more. He went to the front desk and asked for a taxi and went to the closest emergency room, at Massachusetts General Hospital.

An Inflamed Heart

Because of his chest tightness, the doctors at Mass General ordered an EKG. To his surprise, it was abnormal, and he was rushed to the cardiac care unit. He hadn’t had a heart attack; they were sure of that. But something had damaged his heart.

After dozens of tests, the doctors told him he had something called myocarditis, an inflamed heart muscle, though they couldn’t tell him why. For three days they searched for the cause of injured muscle. Myocarditis is often due to a viral infection, but the doctors wanted to make sure they didn’t miss anything treatable.

At the top of their list, they worried that he had picked up some kind of tick-borne infection while in rural Colorado. None of the tests came back positive, but they sent him home to finish up a week of the antibiotic doxycycline, just in case.

You can read the notes from Mass General and the infectious disease specialist here.

Admission Note

Infectious Disease Notes

A Short Trip Home

In the hospital he felt a little better. His chest didn’t hurt, and his heart wasn’t racing. His fever went down. On his way home he felt like he was on the mend. His wife wasn’t so sure. And a couple of hours later, when she looked in on him again, she was frightened by how sick he looked.

He was pale and sweaty – the way he’d been in the mountains. And the shaking and fevers were back. His headache was so bad that he was crying with pain, something she’d never seen before. She called Mass General. The doctor there said that if she was worried she should bring him right back. But the prospect of an hour-long drive seemed daunting. She decided to take him to the local hospital one town over.

So, did he want her to call an ambulance, or should they go by car?

Back to the Hospital

The patient’s wife dropped off the kids at a friend’s house, then drove him to Anna Jaques Hospital in Newburyport, Mass. It was late by the time they arrived and the emergency room was quiet.

Dr. Domenic Martinello knocked at the entrance to their hospital cubicle. The patient’s wife looked up expectantly, her face tight with exhaustion. The patient lay motionless on the stretcher; his eyes were sunken, and his skin hung off his face as if he hadn’t eaten much recently. His voice was soft but raspy, and every time he swallowed, his lips tightened in a grimace of pain.

Together, husband and wife recounted the events of the past few days: the wedding, the fevers, headaches, pain in his chest, in his neck and in his throat, the four days in the hospital in Boston.

It was certainly a confusing picture, and Dr. Martinello wasn’t sure what to make of the diagnosis of myocarditis. But the patient had no chest pain now, only the headache, sore neck and painful throat.

He quickly examined him. The patient’s skin was warm and sweaty, and his neck was stiff and tender, especially on the right. He was going to approach this systematically, he told the couple. First he would get a head CT, then a scan of the neck, and then he would do a lumbar puncture – a spinal tap. He felt optimistic that one of those tests would give him an answer.

You can see Dr. Martinello’s note here.

Hospital Note

Solving the Mystery

Dr. Martinello did get an answer. But it wasn’t the one he was expecting.

The first reader to identify the cause of this man’s illness gets a copy of my book and the pleasure of making a difficult diagnosis. The answer will be posted Friday afternoon on Well.

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.

When the Patient Won’t Ever Get Better

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Credit Stuart Bradford

“Tell me,” my patient’s daughter asked at the other end of the phone line. “Is she stable?”

I wasn’t sure how to answer.

My patient hadn’t been home in nearly three months. It had all started to come apart in the fall. Until then, she’d been a healthy 90-year-old who lived alone and cooked all her own meals, played tennis in the summer, binged on movies in the winter. But then there was a strange pain in her back, a visit to an urgent clinic and a harrowing ambulance ride to the emergency room. A tear had developed in the wall of her aorta, one of the main vessels carrying blood from the heart. In a windowless conference room, the doctors told my patient’s family that without emergency surgery, she would most likely die.

To her family’s relief, the surgery went well. But there were complications – first pneumonia, then kidney failure, delirium, profound weakness. After two weeks she hadn’t died, but she hadn’t recovered, either. Because she was still dependent on the ventilator, her doctors took her back down to the operating room for another procedure, a tracheotomy, cutting a small hole in her neck to serve as a more permanent connection for the ventilator. Because patients with tracheotomies can’t eat using their mouths, at least not at first, she returned from the O.R. with another new tube, a feeding tube in her stomach.

Another few weeks passed in the I.C.U. It seemed that as soon as one infection got under control, another developed. From time to time, my patient’s delirium seemed to clear – when she was strong enough to breathe through the tracheotomy without the ventilator, she could speak with her family and offer one-word answers to questions. Her whisper was so soft they could barely hear her. On other days she was scared and wild-eyed, hands bound with soft “mitten” restraints to keep her from pulling out the feeding tube that delivered the thick white liquid slurry pumping from a bag on an IV pole above her head directly into her stomach.

One day, her family learned that she had a bed at another facility, called a long-term acute care hospital. This was good news, her doctors told the family. It meant that this weak, intermittently delirious woman who looked nothing like the spry 90-year-old who’d come to urgent clinic some months before didn’t need the I.C.U. any longer. They were cautiously optimistic.

In this new hospital, she did get better. Some days she managed to stay off the ventilator for eight hours, then 12, then a day, then two. Her tracheotomy was removed and the hole in her neck started to heal. Her delirium lifted, replaced by a dull, lifeless gaze. Her kidneys improved. And then, things stopped getting better. Time slowed. There she was – neither dead nor truly alive – stuck, it seemed, in limbo.

One Saturday, she spiked a fever. Her breathing grew ragged. Back in the E.D. she was intubated once again, then sent up to the I.C.U., where her daughter called us to ask, “Is the stable?”

I debated about how to respond. The ventilator was delivering sufficient oxygen. Intravenous med drips were acting directly on her heart to keep her blood pressure at an acceptable level. Her kidneys were functioning to make urine.

But behind the façade of stability was a more dire truth: she might never get better. With her constellation of ventilation dependence, infections and delirium, she had what doctors call “chronic critical illness.”

Her story isn’t unique; there are about 100,000 chronically critically ill patients in the United States at any one time, and with an aging population and improving medical technologies, this number is only expected to grow. The outcomes of these patients are staggeringly poor. Half of the chronically critically ill will die within a year, and only around 10 percent will ever return to independent life at home.

Chronic critical illness is not something I learned about in medical school, or something that many doctors even talk about. One reason might be that the care for the chronically critically ill quite literally takes these patients out of our view – they move, as my patient did, from hospital to long-term care and back again, accompanied by a growing stack of medical records as things slowly fall apart.

In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so? Here, I find that I am often at a loss.

I was quiet on the other end of the phone line that night. Was my patient stable? For the moment, she was. But with each event like this one, and there would be more, my patient would move further from the hope of ever reclaiming that life she had had in the fall: living in her own home, watching movies, cooking. I felt that I could see the weeks and months spooling out, a moment of calm, a new emergency. But this wasn’t the time to tell her daughter, not on the phone, not tonight.

And so I told her the truth – one truth, at least. Her mother was critically ill, but stable for the night.

Daniela Lamas is a pulmonary and critical care fellow at Brigham & Women’s Hospital in Boston.

Letting Patients Tell Their Stories

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Credit Lehel Kovacs

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Credit Earl Wilson/The New York Times

Friday night in the emergency department is about what you’d think.

It starts off slow: a middle-aged man with a middling pneumonia; an older nursing home resident with a urinary tract infection that is making her delirious. Then come two heart attacks at the same time, followed by a drunken driver with a head bleed and half his rib cage fractured. At midnight, in roll the inebriated members of a bachelorette party that has not gone, one assumes, according to plan.

Amid the chaos, I break off to greet a thin, older man, quietly bundled up on a hallway stretcher. I look over his chart and prior scans. His prostate cancer has grown through several chemotherapy regimens. His spine is full of tumor and he’s been vomiting everything he eats or drinks for weeks. He can’t move the left side of his body after a recent stroke.

He smiles a charming, crooked smile. “It hasn’t been the best month of my life.”

“I’m sorry to hear that.”

I ask him about his symptoms, when they started, how bad they’ve gotten. He asks me where I went to medical school and if I have a girlfriend. I ask him if he’s dizzy and whether there’s blood in his stool. He tells me he emigrated from Greece 50 years ago, almost to the day. He won a scholarship to M.I.T. and studied electrical engineering. There he met his wife — “a fantastic cook” — and started his first company.

Now, decades later, he’s alone — in a crowded emergency room, on a Friday night, his wife dead, his two sons overseas, a nurse visiting him once a week at home to help him with some medicines and make sure the various tubes coming out of his body aren’t infected.

I ask him when he last moved his bowels.

“Son, I’m dying. I’m alone. One day you’ll learn there’s more to a good death than how often I move my bowels.”

I pause.

I am better at many things than I was when I started my journey to become a physician more than a decade ago. But I am not sure that understanding patients as people — and placing them in the context of their long, messy, beautiful lives — is one of them.

Doctors are trained first to diagnose, treat and fix — and second, to comfort, palliate and soothe. The result is a slow loss of vision, an inability to see who and what people are outside the patient we see in the hospital.

As we acquire new and more technical skills, we begin to devalue what we had before we started: understanding, empathy, imagination. We see patients dressed in hospital gowns and non-skid socks — not jeans and baseball caps — and train our eyes to see asymmetries, rashes and blood vessels, while un-training them to see insecurities, joys and frustrations. As big data, consensus statements and treatment algorithms pervade medicine, small gestures of kindness and spontaneity — the caregiving equivalents of holding open doors and pulling out chairs — fall by the wayside.

But all care is ultimately delivered at the level of an individual. And while we might learn more about a particular patient’s preferences or tolerance for risk while explaining the pros and cons of a specific procedure or test, a more robust, more holistic understanding requires a deeper appreciation of “Who is this person I’m speaking with?”

In Britain, a small but growing body of research has found that allowing patients to tell their life stories has benefits for both patients and caregivers. Research — focused mostly on older patients and other residents of long-term care facilities — suggests that providing a biographical account of one’s past can help patients gain insight into their current needs and priorities, and allow doctors to develop closer relationships with patients by more clearly seeing “the person behind the patient.”

In the United States, Medicare recently began paying doctors to talk with their patients about end-of-life planning. These conversations allow patients to discuss and explore their preferences about a slew of complex medical interventions, including clinical trials, transfers to the intensive care unit, use of mechanical ventilation or feeding tubes, and the desire to die at home or in the hospital. These discussions, too, may benefit from a biographical approach, in which patients are able to elaborate on what is and has been most important in their lives. To better serve patients, we need to see not only who they are, but also who they were, and ultimately, who they hope to become even at the end of life.

How much more effective would we be as diagnosticians, prognosticators and healers if we had a more longitudinal understanding of the patient in front of us? If we saw not just the shrunken, elderly Greek man on the emergency room stretcher in front of us, but also the proud teenager flying across the Atlantic to start a new life half a century ago?

The emergency room is, by its nature, an arena designed for quick thinking and swift action. There are certainly other places, times and circumstances more conducive to probing goals-of-care discussions and lengthy forays into the internal lives of patients.

Still, there is always some moment of grace and meaning we can help patients find in the time they have left, a moment that recalls a time when they felt most alive — even if it’s just a fleeting conversation about gyros and electrical circuits in a busy emergency room, late on a Friday night.

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

Most Dangerous Time at the Hospital? It May Be When You Leave

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Credit Stuart Bradford

His wife assured me he was the life of the party, the kind of guy “you pay to stop talking.” But her description only added to the concerns I had about my patient, a drowsy older man with gnawing abdominal pain. He listlessly told me he had noticed his stool was darker than usual, a sign of bleeding from the G.I. tract “Doc,” he could barely get the words out, “I didn’t think nothing of it till I started feeling woozy. Then I thought a lot of it.”

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Dr. Dhruv Khullar

Dr. Dhruv KhullarCredit Tom Fitzsimmons

As a medical resident, a doctor-in-training who leads much of the day-to-day patient care in the hospital, I’m among the first to see patients. Along with my team, I assume the bulk of the logistical duties of admitting new patients – interviewing them and their families, writing orders, calling consultants, scheduling appointments and responding to sudden changes in their clinical condition. When I started residency, I personally carried out most of these tasks. Now, as I progress in my training, I’m increasingly supervising younger residents doing them.

For this patient, our team immediately stopped any home medications that could further lower his blood pressure — in his case Lasix, a “water pill” that removes extra fluid in patients with heart failure. We rushed him to the endoscopy suite, where doctors placed a clip on the site of the bleeding. I was impressed with how rapidly he recovered. His wife, it turned out, was right. He did talk, a lot. I even took a small measure of satisfaction at my quick recognition and management of his condition. Victory.

Not quite. The patient was feeling better and insisted on being discharged, though we had hoped to monitor him in the hospital for another day or so before resuming his medications. Together, we decided it would be O.K. for him to leave, provided he saw his primary care doctor in a few days to restart his medications at the right doses.

I completed the discharge summary, and the patient went home. But he skipped the follow-up appointment. He still hadn’t started his water pill when he finally saw his doctor a week later. By then, fluid had accumulated in his lungs, his breathing had grown labored and I got the dreaded ping on my cellphone: “your patient has been readmitted.”

When we’re notified a patient we discharged has been readmitted, it’s generally a mark of shame, generating a sense that we failed to do enough to restore our patients to good health. But discharging a patient from the hospital is among the most difficult and dangerous aspects of providing medical care. It’s a tumultuous time, when the results of many lab tests may still be pending, medication regimens have been disrupted, and the doctors in charge are often left speculating about whether a patient is truly ready to leave. In the meantime, most patients who are feeling better just want to go home – and they let us know.

One-fifth of Medicare beneficiaries are readmitted within 30 days of discharge, and one-third are readmitted within 90 days. One study found that 20 percent of patients have a complication within three weeks of leaving the hospital — more than half of which could have been prevented or ameliorated. Thankfully most complications are minor, but some can be serious, leading to permanent disability or death. All told, Medicare spends $26 billion annually on readmissions, $17 billion of which is for readmissions that are considered preventable.

Issues crop up after discharge for many reasons. One factor is the process we use to admit versus discharge patients. In teaching hospitals, a junior resident — a year or two out of medical school — typically spends hours interviewing a patient, gathering information and developing a plan. He or she might then discuss the plan with more senior residents before ultimately presenting the case to the attending physician in charge. Together, they all examine the patient and settle on a plan, which is updated every day.

Contrast this with the discharge process. Ideally, it begins at admission through discussions with case managers and family members. But there’s often a rush toward the end of hospitalization — when a patient wants to leave or a rehab bed opens up — leading to a haphazard set of final conversations, appointments and prescriptions. And because the exact time of discharge is uncertain, the doctor discharging a patient may not be the one who knows the patient best.

It’s also often not clear exactly when a patient should be discharged. There’s no green light that turns on when a patient recovers or crystal ball that predicts what will happen afterward. In the hospital, we constantly monitor a patient’s vital signs, blood tests and clinical condition. But after hospitalization, patients live in a very different environment — and there’s tremendous uncertainty in that transition. Sometimes the difference between discharge today versus tomorrow is a more frustrated patient and higher medical costs. Sometimes it’s a devastating complication that hasn’t yet declared itself.

As patients recover from their immediate illness, the remaining diagnostics and treatments are often completed after discharge. But this is where we struggle most. Research suggests direct communication between hospital doctors and primary care doctors occurs infrequently and that discharge summaries — detailed records of a patient’s hospital course — are often unavailable at a patient’s first post-hospital visit. Almost 30 percent of patients are discharged with a plan to continue workups after hospitalization, but more than one-third of these are never completed. Similarly, more than 40 percent of patients have lab tests pending at the time of discharge — with 10 percent requiring action—but most physicians remain unaware of them.

There are steps that patients, doctors and hospitals can take to improve the transition from hospital to community — and we’re starting to make progress. Post-discharge phone calls, nurse-led discharge planning, visiting nurses, and dedicated “transition coaches” have all been shown to lower readmission rates. Pharmacists reviewing medications with patients can reduce drug-related complications. Ensuring high-risk patients see doctors within a week of discharge can prevent readmissions. Moving forward, greater use of telemedicine and dedicated post-hospital discharge clinics or specialists will be part of the solution.

More seamless transitions from hospital to clinic require recognizing that our responsibilities to patients continue, and sometimes increase, when they leave us. Like many of medicine’s important but often overlooked areas — prevention, screening, care coordination — discharge planning is not widely celebrated. But for patients hoping to stay out of the hospital, it may be what matters most.

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

The Costumes That Obscure Doctor and Patient

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Credit James Yang

Is it time for new costumes in the long-running improv act featuring doctor and patient? The white coat and the cotton gown are tattered, under continual assault for their practical deficiencies and outmoded symbolism.

Along with ties and long sleeves, Britain banned white coats for most doctors almost 10 years ago. Our priestly garb turns out to harbor quantities of bacteria, including the hospital-associated germs we try to keep away from patients.

Presumably all garments carry bacteria, including the vestments of priests. The clergy, though, probably tote a less noxious load — and probably change robes more often. Doctors report that they do so only every couple of weeks, long enough for grime to accumulate.

Most American medical schools now bestow a fresh white coat on every new student, a symbol of our exalted professional aspirations. Some American hospitals now discourage those selfsame coats in the name of hygiene. Draw what moral you will. Many pediatricians would no more dress in a white coat than in a gorilla suit, lest they scare the little ones. Some adult doctors, reasoning that we are all children in illness, feel likewise. Some of us just need the pockets.

The best clinician I ever knew was draped in a grayish shabby thing spilling over with scraps of paper, vaguely redolent of his usual weekday lunch of pea soup. Whether you were a patient or a trainee, you didn’t really want him near you, until you quickly figured out that you really did.

One of the worst specimens of doctor I’ve run into wore snowy white, changed daily. You really didn’t want that guy near you, period, as many of his patients ultimately realized, including the ones who took him to court.

The symbolism surrounding patient gowns is just as fraught. They are cheap, demeaning, undignified and chilly. One way to cope is to wear two of them, one opening to the front and one to the rear. Thus encased, the patient is snug and warm, and also extremely well defended from inquisitive fingers and probing stethoscopes. It turns out that actual clothes are far easier to push aside for an examination than are two johnnie gowns firmly knotted together.

But patient gowns are out of style in some places mostly because they clash with the dominant medical fashion these days: doing everything at top speed. People need time and privacy to dress and undress. Medical settings without time or extra space find their stacks of clean gowns going undisturbed.

Instead, patients disrobe incompletely, or sometimes not at all, just opening little portals in their clothing through which what passes for a physical examination can be performed. Such accommodation is regrettable, but necessary to maintain our cruising speed. Call it laparoscopy for the nonsurgeon.

For my professors, the physical exam was a sacred ritual. I sometimes wonder which would distress them more: the thought of treating a rash glimpsed only on a cellphone screen, or the idea of asking a patient to open two shirt buttons under his tie for a quick inspection of that thing on his chest. I’ve been guilty of both.

A couple of months ago, on a frigid winter day, a stolid, silent patient came in because her knee hurt. “Just give me something,” she said. I was sorely tempted, but I couldn’t do it: I had to examine both unclad legs. She cast me a look of pure disgust and hauled herself to her feet.

It took almost 10 minutes for her to peel off the layers of tight, ill-fitting jeans, socks, pantyhose, more socks, more hose, long underwear, down to the arthritic knee. It took another 10 minutes to put it all back on.

My professors would have stepped out to give her some privacy. For some reason, I stayed where I was.

Those 20 minutes were death to the day’s schedule, but invaluable for showing the harried doctor something of the grim labor of everyday life for this patient, a heart-rending discomfort of binding elastic and straining seams she could never have articulated, and, of course, one that would have been invisible with her on display in a hospital gown.

It was the process that educated, not the final tableau.

We are never more human than when we are dressing and undressing, and yet for our medical care, we have, for some reason, decided to posture in front of one another fully costumed, pretending that, encased in our separate roles, we will get to the bottom of the pain.

Perhaps we need not new costumes but new stage directions. Perhaps doctors should routinely watch patients undress and then dress again. Perhaps, for that matter, patients should watch doctors washing their chapped hands yet again and putting on their white coats, checking the pockets for tools, phone numbers, reminders, lists of urgencies, looking at those coffee stains and wincing, vowing to get to the laundry and then forgetting.

For Transgender Patients, Challenges at the Hospital

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Beck Bailey has encountered some health care professionals who were unsure how to treat transgender patients.

Beck Bailey has encountered some health care professionals who were unsure how to treat transgender patients.Credit Kieran Kesner for The New York Times

After a skiing accident in January left him with a smashed knee, Beck Bailey, a transgender man in Greenfield, Mass., spent 15 days in a Vermont hospital undergoing a handful of surgeries. As part of his normal routine, Mr. Bailey gives himself regular shots of testosterone. But the endocrinologist on duty in Vermont told him that patients should not take testosterone post surgery.

Mr. Bailey explained that he couldn’t just stop his hormone treatment. But the doctors were so resistant that he finally had them call his primary care physician, who explained he should resume his usual protocol.

“I don’t expect every doctor in the world to become an expert in trans medicine, but I do think they should be knowledgeable enough to know what they don’t know and pick up the phone and call an expert,” said Mr. Bailey, 51, deputy director of employee engagement at the Human Rights Campaign, an advocacy group for gay, lesbian, bisexual and transgender people.

Mr. Bailey’s experience is echoed by many transgender patients, both those who have fully transitioned and those in the process. Research on nontransition-related medical needs is limited; most medical schools don’t prepare doctors for treating this community.

“What happens once you get past the immediate issues of transition, and you run into problems with diabetes, cancer, with the E.R.?” said Karl Surkan, 46, a professor of women’s studies at M.I.T. and Temple University.

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Credit Mark Makela for The New York Times

Mr. Surkan, who is transitioning from female to male, has firsthand experience: He carries the BRCA1 gene and was given a diagnosis of breast cancer. When he inquired about whether testosterone would affect his cancer treatments, his oncologist told him, “It probably would, but we don’t have any data on whether testosterone would cause a recurrence of your cancer. We wish we could help you.”

Indeed, there are few longitudinal studies on hormone use in the trans community. Many doctors aren’t aware that some transgender men may still need pap smears, breast exams and mammograms, and that all transgender women should be screened for prostate problems.

“Many transgender men and women have not had genital affirmation surgery and retain reproductive organs they were born with,” said Dr. Harvey Makadon, the director of education and training programs at the Fenway Institute in Boston and a clinical professor of medicine at Harvard Medical School. “All transgender women still have a prostate gland, and a good clinician will need to learn about the current anatomy and provide appropriate preventive screening and care.”

In addition to medical concerns, many trans patients say they are discriminated against by doctors and other medical staff members who misuse pronouns, call them by incorrect names or house them with people of the wrong gender.

According to a 2010 report by Lambda Legal, 70 percent of transgender respondents had experienced serious discrimination in health care. And a 2011 study of more than 6,000 transgender people by the National Center for Transgender Equality and the National LGBTQ Task Force found that 19 percent said they had been denied health care because of their transgender or gender nonconforming status. Many of them avoided the doctor’s office altogether: 28 percent had postponed getting health care when they were ill or injured, and 33 percent had delayed or not sought preventive care because of their past experiences with doctors.

A 2014 report by the HRC Foundation found that out of 501 hospitals researched, 49 percent did not include both “sexual orientation” and “gender identity” in their patient nondiscrimination policies.

Hospitals, for their part, are often flummoxed. Where, for example, should they put a patient who identifies as female, but is anatomically still male or listed that way on their birth certificate?

Mr. Surkan said that he has been placed in hospital rooms with other women. “It doesn’t bother me as much as it bothers people who are housed with me,” he said. “I do have a friend who is much more masculine appearing who had a hysterectomy, and he was put in the ward with women. That was pretty awkward for everybody.” He has since co-founded the TransRecord, which, together with sites like RAD remedy, act as a kind of clearinghouse for trans people seeking medical care.

In July, a transwoman alleged sex discrimination at Brooklyn Hospital Center after being placed in a room with a male roommate. “We didn’t realize that the individual was transgender,” said Joan Clark, a hospital spokeswoman. The hospital now requires all employees to undergo sensitivity training. “I think it’s made us a better organization,” she said. “They don’t want different treatment, they just want equitable treatment.”

Wrene Robyn, 46, a transwoman in Somerville, Mass., began her transition in 1989, when she changed her name on her driver’s license and Social Security cards, and the gender on her driver’s license from male to female. While she integrates fairly well into mainstream society, she has avoided the doctor for years. “Most trans people don’t go to the hospital, because they’re terrified of the room situation,” she said. “They’re terrified of it all. They don’t want to be misgendered, and they don’t want to explain what they have or don’t have in their pants.”

In April, after a bout of pancreatitis, Ms. Robyn spent a week in Massachusetts General Hospital in Boston, where she was given a single room. “Nobody really asked me what my preference was,” said Ms. Robyn, who works as a software engineer at the hospital and also serves on a transgender care committee there. In addition to worrying about being discriminated against, “What goes through a lot of trans people’s minds is, is this going to cost more? Usually we can’t afford private rooms.” (It was covered by her insurance.)

Some hospitals are now overhauling — or implementing — policies on treating transgender patients. At Mass General, for example, transgender patients are now asked if they prefer a private room or double. “If they are going to be placed in a double room, we ask them how they identify themselves,” said Terri Ogan, a spokeswoman. “If the patient identifies as a woman, they will be placed in a room with a woman. If they identify as a man, they will be placed in a room with a man.”

Transgender patients at Mount Sinai Health System, which encompasses seven hospitals in New York City, have been housed according to their current gender identity, regardless of where they are in their physical transition, since 2013. They can also request a single room. Previously, the hospital always put them in private rooms, but that had drawbacks: Many patients felt as if they were being segregated, and worried that they would be charged extra (they weren’t). “Often the transperson would be delayed or in the E.R. waiting for a single room to open up,” said Barbara Warren, the director for L.G.B.T. programs and policies at Mount Sinai’s office for diversity and inclusion.

Terry Lynam, a spokesman for North Shore LIJ Health System, which has 21 hospitals in New York City, Long Island and Westchester, said that their transgender policy, which was approved in November of 2014, is to treat transgender patients like any other patient. “So, we wouldn’t necessarily give them a private room,” said Mr. Lynam. But, he acknowledged, the issue becomes a bit more complicated with patients who still look like the sex they were assigned at birth. In that instance, if a roommate objects, “We’ll try to accommodate them and move the person who complains,” he said.

Advocates see this as a long time coming. “I’ve been telling hospitals that they really need to think about this and adopt some policies proactively,” said Tari Hanneman, deputy director of the Health and Aging Program at the Human Rights Campaign. “The first time you think about where you are going to put a transgender patient should not be when they arrive.”

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In Hospitals, Smoke-Free Doesn’t Mean Abuse-Free

Photo

Credit James Yang

The substance user and the hospital are bound by the most ambivalent of relationships. Heavy users — of tobacco, alcohol or harder drugs — see far more of the wards than the average citizen and, it is safe to say, like them even less.

They need hospitals. They hate hospitals. Hospitals make them well and sick at the same time. We are their doctors and nurses, their parents, their arresting officers, parole officers, judge and jury. Needless to say, we are not trained for the last five roles, nor are we particularly good at them.

A single principle guides us: You cannot use your drug of choice on our premises, no matter how much you may need it and prefer it to our proffered alternatives. Around that immutable core swirl large clouds of negotiation, compromise, duplicity, manipulation and general misery for all involved.

On some days it seems as if we spend all our energies managing not the conditions we are trained to manage but the addictions that complicate them.

One patient is tying his shoes as we make our rounds in the morning, and tells us cheerfully that he is going out for a smoke. He’ll be right back. We inform him, not without sympathy, that in our hospital smoking breaks are not allowed. If he leaves for even half an hour he will officially be considered discharged. His bed will be given to someone else, and to resume his medical care, he will have to go back to the emergency room and start the cycle all over again.

We propose a nicotine patch instead, but the nurses have already given him a patch, to no effect. Few other compromises are possible between the smoke-free hospital and the hard-core, implacable smoker. The discussion grows heated. We wind up discharging him on the spot, just a little sooner than we had in mind.

The patient in the next room has been in the bathroom for almost an hour. We need to examine him. We knock on the bathroom door. He yells out that he’s fine.

When he finally drifts out, drowsily readjusting the dressing covering the intravenous line in his arm, he doesn’t look fine. He looks as high as a kite, and come to think of it, the two visitors lounging by his bed do, too. We sigh. No easy compromises will be possible for him.

It was back in the 1980s that most American hospitals became officially smoke-free (and cigarette butts began accumulating in stairwells and side exits). The big exceptions were the V.A. hospitals: In fact, theVeterans Health Care Act of 1992 specifically required V.A. facilities to establish designated smoking areas for clients. In 2008, those areas were all moved outdoors, and most V.A. hospitals still have them.

This policy has been bitterly criticized as the worst kind of tobacco industry manipulation, but it does serve a useful function: It allows medical care to proceed without major interruption. Granted, that care is often for tobacco-related conditions, a cycle that strikes some observers as a common-sense, harm-reduction approach to the real world, and others as completely insane.

Still, smokers pose fewer challenges than intravenous drug users, like that young man who wandered out of his bathroom to face our interrogation. He has an infected heart valve, and is receiving high doses of antibiotics through an intravenous line in his arm, a portal to his bloodstream that is apparently proving too tempting for him to ignore.

He needs antibiotic treatment, and we have no oral options for him. Among other considerations, if his guests keep providing him with substances to shoot into that line, it may well become infected and unusable, and he will get even sicker than he is.

He promises never to do it again.

So now what? We have a set of programmed responses, none particularly satisfying or effective.

We can give him some methadone to keep him from withdrawing. We can screen his visitors or post a watcher at his bedside. Some hospitals transfer patients like him to an expensive intensive care bed for even more careful monitoring. Some make contracts and threaten to kick patients out for violations. (Can we really kick them out, as desperately sick as they are? I’ve never actually seen that happen.)

Addiction experts point out that hospitalizations offer an excellent opportunity to urge addicts into treatment. Unfortunately, inpatient acute care hospital wards are spectacularly ill equipped to provide that treatment, which would require a specially trained, dedicated team of medical and mental health professionals able to treat infection and addiction at the same time, in the same bed, on the same premises. It doesn’t sound like a particularly expensive proposition, but it must be one, because it’s another thing I’ve never seen happen.

Instead, we routinely plan for patients to be transferred to drug treatment programs when they are discharged. Quite a few don’t last that long. Our patient will prove to be one of them: After a few more days, he will suddenly be gone, well enough to walk out of the hospital (and take his intravenous line with him).

Presumably, he will try to make it out in the world until he gets too sick and lands in another hospital, where events will repeat themselves in yet another baffling health care cycle.

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Think Like a Doctor: Drowning on Dry Land

The Challenge: A healthy 67-year-old man develops an annoying little cough that, over the course of a week, worsens and nearly takes his breath away. Can you figure out why?

Every month, the Diagnosis column of The New York Times Magazine challenges Well readers with a real-life diagnostic question. In this case, a retired Air Force officer shows up in an emergency room with chest pain so severe he can barely breathe.

I will provide you with the history, data and imaging available to the doctor who made the diagnosis. It’s up to you to make it all make sense.

The first person to identify the cause for these symptoms will win a copy of my book, “Every Patient Tells a Story.”

The Patient’s Story

“I think you’re dying,” the anxious wife told her husband of 38 years. Her 67-year-old spouse sat propped up at the head of the bed. His chin rested on his chest and his face bobbed up and down with each rapid fire breath. He gazed up at her from beneath his shaggy gray eyebrows.

“I’m going … to be … O.K.,” he panted in a whisper.

She didn’t think so, and she wasn’t alone. She had just spoken to one of his oldest friends, and he was worried too, she told her husband. The friend thought they should go to the hospital.

“Now?” the man breathed.

She nodded. He finally nodded in return. He would go.

A Knife in the Back

It all happened so fast. An annoying little tickle that started maybe a week before was now a great wracking cough. Every breath felt like a knife cutting through to his back. The pain was so severe he couldn’t take a deep breath, and he felt like there was so much stuff in his lungs that the little breaths he could take didn’t bring in enough air.

As he sat on his bed struggling to breathe, he suddenly flashed back to a morning many years ago when, as a small child, he’d fallen into the deep end of the pool. He sank to the bottom, arms and legs flailing, the need for breath overwhelming. Suddenly he saw an explosion of bubbles, then felt strong hands lift him up, back into the air. Back where he could breathe.

Now more than 60 years later he felt like he was struggling the same way. This time without the water, but still in need of rescue.

The 30-mile drive from their home to Huntsville Hospital in Huntsville, Ala., was mostly on the interstate, but every tiny bump or dip brought a soft grunt of pain. The man held onto the strap above the window, willing himself motionless.

His wife walked him into the emergency room, then hurried to park the car. By the time she got back he was already in a bed and, with oxygen piped into his nose, a little more comfortable.

Downhill at the Fishing Camp

Dr. Robert Centor, the attending physician on call at the hospital, had heard about the patient the night before and was eager to see him the next morning on rounds.

He’d started off with a little nothing of a cough, the man told Dr. Centor. He mentioned it to his own doctor just before he went out to his fishing camp with some pals. After listening to his lungs, his doctor had pronounced him “just fine.”

But the cough kept getting worse, going from occasional to constant practically overnight. He couldn’t read or eat or sleep. Lying down made it even harder to breathe, so he spent two nights in a recliner. And the friends who’d come to the camp with him got absolutely no sleep because of his persistent hacking.

The third day of their trip, his chest began to hurt. Every breath felt like a dagger. Moving made it worse. So did breathing. He got out of breath just walking to the kitchen. His friends were worried. And, finally, so was he.

As soon has he got home his wife took him to the local emergency room. A chest X-ray showed cloudy white patches over both lungs. He had no fever nor any sign of infection, and so the E.R. doctor figured it was probably his heart. The patient could stay in the hospital and see his doctor there or go home and see her in her office the next day.

It was an easy decision: He’d much rather go home. The E.R. doctor admonished the patient to see his doctor as soon as he could and let him leave.

A Problem Heart?

The patient saw his doctor a couple of days later, and a brief exam convinced her that the E.R. doctor was right: It probably was his heart. It was hard to imagine any other reason for there to be clouds all over both of his lungs. Not too many things could do that. You could see it with a whopping pneumonia – but he had no fever or other signs of infection. Or you could see it with something known as congestive heart failure, which is what the emergency room doc thought he had.

Congestive heart failure reflects a problem not with the lungs but with the muscle of the heart, the doctor explained. It gets injured somehow – maybe because of a heart attack or infection – and suddenly it can’t beat as strongly as it had. Fluid from the blood, which should have been pumped out into the body, was instead backing up into his lungs.

She sent him home on a powerful diuretic to help draw the water out of his chest and arranged for him to have an echocardiogram, an ultrasound of his heart, to confirm her diagnosis.

The diuretic kept him in the bathroom for much of the next two days, but it didn’t seem to help at all. And so his wife, with the support of his friends, finally convinced the breathless man not to wait for the “echo” but to go right then to the big university hospital in Huntsville.

A Healthy Guy, Until Now

As the man and his wife told their story, Dr. Centor took a good look at his new patient. He was tanned and trim – clearly not someone who spent much time being sick. But he coughed frequently, and every paroxysm brought a grimace of pain to his face.

Before this, the man told him, he’d been pretty healthy. He took a medication for high blood pressure and another for his heartburn. A month earlier, he’d had knee surgery, an operation that left him with a big pus-filled wound – red, hot and incredibly painful. So, for the past few weeks his wife had been injecting a syringe full of an antibiotic, called Cubicin, into an intravenous line he had snaking up through his left arm. It was clearly doing its job because, although his knee was still pretty sore, there was no more pus and it looked a whole lot better.

He quit smoking five years ago. He drank sometimes with his pals on special occasions but hadn’t had anything since he started taking the antibiotic. He exercised regularly, at least before the surgery.

The couple had a dog, but no birds or other pets. He had retired five years earlier, but during his career he had been assigned to bases all over the world – especially the Middle East. He spent a lot of time in Afghanistan. And he’d done some time as a pilot in Vietnam, where he’d been exposed to Agent Orange, the herbicide used there that had been associated with many health problems later in life.

Working to Breathe

On exam, the patient’s breathing and heart rate were high and his oxygen level was low – a bad combination.

Dr. Centor gently placed a hand on each side of the patient’s neck and could feel the strap muscles there tense with every breath. These muscles are recruited to help breathing when needed; they pull the rib cage up to help the patient suck in more air. And when Dr. Centor listened to the patient’s lungs he heard a cacophony of tiny snaps with every breath, as if inside his ribs a sheet of bubble wrap was exploding. His knee revealed a well healing surgical scar.

Dr. Centor had already seen the X-ray and CT scan done the day before. You can see the chest X-ray and the CT report here.

Photo

The chest X-ray showed cloudy white patches over both lungs.

The chest X-ray showed cloudy white patches over both lungs.Credit

The CT Report

Reviewing the Notes

The radiologist thought it was an infection, and so the patient had been started on the usual antibiotic combination for pneumonia. But why had this healthy retiree developed a whopping pneumonia – not in part of one lung, which is usually what occurs with pneumonia, but all over, and in both lungs?

Dr. Centor reviewed the notes from the E.R. and from his resident, and the data from the labs. You can see those notes and labs here.

Emergency Room Note

The Resident’s Note

The Lab Reports

Solving the Mystery

What was he missing? Dr. Centor asked himself.

He figured it out. Can you?

Submit your responses in the Comments section. As usual, the first person to figure out the diagnosis gets a copy of my book. And that warm satisfaction that comes from solving a mystery.


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