Narrating medicine

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Narrating Medicine: What I Learned About Cancer Survivorship Clinics

In this 2015 file photo, a nurse places a patient's chemotherapy medication on an intravenous stand at a hospital in Philadelphia. (Matt Rourke/AP)

In this 2015 file photo, a nurse places a patient’s chemotherapy medication on an intravenous stand at a hospital in Philadelphia. (Matt Rourke/AP)

When a friend recently finished her grueling year of breast cancer chemotherapy, she received warm congratulations from her health care team and was invited to ring a special bell set up in her doctor’s office. Another friend, cancer-free for a year, is rewarding herself by taking part in a bike ride fundraising for cancer research. Me? Now that I have been on maintenance chemo for two years, I am celebrating by getting a mammogram.

Let me explain. Cancer survivors need continued specialized health care to assess for late side effects from the treatment and the cancer, and specialized preventative care. For example, girls who have received radiation therapy need mammograms at a far younger ages than their peers, and children who have received brain radiation need a yearly hearing assessment.

One way to assess and treat cancer survivors is through Survivorship Clinics. These are places where patients get multidisciplinary appointments and where survivors meet with, for example, specialized health care providers, mental health care providers, nutritionists and physical therapists.

Research presented this week at the American Society of Clinical Oncology describes the value of such clinics. Care of survivors is especially important in children: Over 80 percent of children with cancer survive and need a care plan to guide surveillance for late effects of cancer therapy.

Yet while almost three-quarters of children have a late side effect from their cancer treatment fewer than 20 percent get surveillance for late effects.

In the study presented this week, the authors randomized patients to either attending a Survivorship Clinic or receiving a customized survivorship care plan to use with their primary care provider. The authors found that the participants in the Survivorship Clinic were much more likely to receive recommended testing and more likely to have late effects of treatment identified. In fact, out of about 50 patients in each group, the authors found previously unidentified late effects of cancer — including obesity, high lipids, hypothyroidism, neuropathy, osteopenia, restrictive lung disease, substance abuse and anxiety — 21 times in the Survivorship Clinic group, but only once in the group that that received a written care plan. Continue reading

When The Therapist Has A Fear Of Elevators

(Allen Lai/Flickr)

(Allen Lai/Flickr)

The cramped elevator in the office building where I practice psychotherapy makes me uneasy.

The carpet looks stained and worn, fraying in the corner. Faded yellow paint barely covers the walls. When the door slides open, a musty smell hits the nostrils of waiting passengers.

I rode this contraption for the first time nine years ago, the day I decided to rent my office. That first trip felt like a movie in slow motion. The machine noisily inched up its shaft, lurching and wheezing like a drunk asthmatic. The seconds dragged by. When the elevator reached the third floor, it grew oddly still. Nothing happened. While I waited for the door to spring to life, I felt my heart thumping in my chest. Silently, I willed that thick, motionless metal portal to move, imagining myself imprisoned in this tiny cell for hours, mouth parched and desperate for a sip of water.

Finally, the elevator car shuddered, and the door slid open. I bolted out, ran down the hall to my new office and tried to catch my breath.

Continue reading

Opinion: Why Medical Students Are Good For Your Health

(Monash University/Flickr)

While the presence of medical students may make some patients uneasy, one student explains how these future doctors can benefit patient care. (Monash University/Flickr)

If you have ever been admitted to a teaching hospital, you’ve probably encountered a medical student in your midst. You might wonder: Is this student actually here to help me, or am I a guinea pig here to help them learn? While the presence of budding doctors may make some patients uneasy, these students often grapple with their own anxieties about the transition out of the classroom and into the hospital room.

When I first started my clinical rotations, I felt apologetic about my presence in the hospital. Having spent the majority of the first two years of medical school in the classroom, I had limited real-life experience and seemingly little to contribute. I worried that I was an impediment to my clinical teams. Or worse, that my presence was a nuisance to patients. Then I met Jack and my view began to change.

Jack was a scrawny 3-year-old boy with a shaved head, huge smile and squishy cheeks. He was admitted to the hospital with worsening asthma. He arrived onto our hospital floor coughing and wheezing as his mom struggled to hold him still.

Our medical team — which consisted of three physicians and two students — determined during our evaluation that the child would need to receive albuterol, a drug used in asthma management, every few hours via an inhaler. As the student assigned to follow Jack, it was my job to examine him every one to two hours — more frequently than any of the physicians on my team — and report back on his status. Before I went home, I signed out to the overnight staff that he was breathing more comfortably.

The next morning, the overnight physicians reported that there had been some miscommunication between the physicians, respiratory therapists and nurses. Jack had not received several doses of his albuterol but had still slept through most of the night. One of the physicians had reevaluated Jack one hour before I arrived. He had been sleeping peacefully.

I jotted down these overnight events and went to see Jack. He was now wide awake, squirming in his bed and working hard to breathe. Continue reading

Opinion: Pediatrician Asks, Why Can’t I Talk To You About Guns In The Home?

A Seattle public health official demonstrates the use of a gun lock box during a news conference on Jan. 21. (Elaine Thompson/AP)

A Seattle public health official demonstrates the use of a gun lock box during a news conference on Jan. 21. (Elaine Thompson/AP)

Here’s a conversation I was in on recently between a pediatric intern and the parents of a healthy, 1-day-old baby. It occurred in the Yale-New Haven Hospital well baby nursery.

“Your daughter’s physical exam is perfect,” the intern said. “She’s eating well, peeing and pooping well. I want to talk to you a little about how to help you keep her safe and healthy.”

Next came a standard discussion about the baby’s sleeping position and whether she’s got a car seat. Then, the next question:

“Do you have any guns in the home?”

Suddenly, the genial tone changed.

“I don’t think you should ask that question,” said the child’s father.

“Should I take that as a ‘yes’?” the intern pressed.

“I just don’t think you should ask.”

“Sir, we ask because we want to make sure that your baby is as safe as she can be, making sure you keep any guns locked up and away from her.”

“It’s none of your business.”

Continue reading

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Opinion: In Simulation Era, Your Doc’s First Try At A Procedure Should Not Be On You

A mannequin for practicing open heart surgery at the Boston Children’s Hospital’s recently unveiled simulation center. Called “Surgical Sam,” it has a life-sized “heart” that accurately mimics the beating motions of a healthy or abnormal human heart. (Jesse Costa/WBUR)

A mannequin for practicing open-heart surgery at the Boston Children’s Hospital’s recently unveiled simulation center. Called “Surgical Sam,” it has a life-sized “heart” that accurately mimics the beating motions of a healthy or abnormal human heart. (Jesse Costa/WBUR)

Most doctors never forget the paralyzing terror of their first invasive procedure.

Dr. Charles Pozner, of Boston’s Brigham and Women’s Hospital, recalls the first time he placed a central line, which involves sticking an eight-inch-long needle into a patient’s jugular vein to place an intravenous line. He had never even seen it done before, but a chief resident offered him the opportunity after a long day working together.

“When I was a medical student, the last thing you wanted to say when someone offered a procedure to you was ‘no.’ You wanted to learn, to be part of the team,” Pozner told me. The chief resident walked him through it without mishap, but “it was an unsafe thing for the patient, and an unsafe thing for me, because I was potentially harming the patient,” he said.

Twenty years later, in 2013, I went through a similar process. I watched a colleague place a central line during my first week as an intern. A couple of days later, I placed my first one, as my senior resident supervised. Thankfully, everything went fine. But that doesn’t mean I’m comfortable with the idea of wielding eight-inch-long needles after only watching someone do a procedure once.

“See one, do one, teach one” is the ancient medical adage for this: that after doctors in training have seen one procedure or operation, they’re qualified to do the next one. It has been the model for teaching physicians for generations.

But in the age of robotic surgery and simulation medicine, is this concept really acceptable anymore?

The short answer is no. Clearly, doctors in training should practice on computers and simulated patients, not real ones. Particularly when, according to a study out this week, medical errors are the No. 3 cause of death nationwide.

The longer answer is more complicated. No one openly defends the concept in medical journals — in fact, experts talk about “see one, practice many, do one.” But the “see one, do one, teach one” culture still persists in hospitals around the country, and it remains routine for physicians in training to practice their first procedure on real patients. (As a patient, what can you do about it? See the tips below.)

“Would you fly on an airplane if they say, ‘We’ll drop the price of our tickets but our pilots will opt out of flight simulation?'”

– Dr. Antonio Gargiulo

But that is changing, as more hospitals and medical schools invest in high-tech simulation centers like the $12 million center unveiled by Boston Children’s Hospital this week.

Dr. Pozner, who is medical director of the Brigham’s STRATUS Center for Medical Simulation, says that in time, medical simulation will mean the death of “see one, do one, teach one.”

The Pilot Analogy

Consider pilots. Chesley “Sully” Sullenberger, the pilot who remarkably landed his plane on the Hudson River, is often mentioned in the medical literature on simulation, as are his hundreds of hours practicing simulated emergencies. If Dr. Atul Gawande famously brought the pilot’s checklist to surgery, simulation proponents think more pilot-style simulation should be brought to medicine.

“It’s called procedural memory,” Dr. Pozner said.

And studies show that simulation works in medicine. One small study trained doctors in robotic surgery, showing that they could reach expert level proficiency by the time they operated on their first real patient.

“The main advantage of this tool is you can get technically perfect before you even touch a patient,” said Dr. Antonio Gargiulo, medical director of the Center for Robotic Surgery at Brigham and Women’s Hospital. Continue reading

Narrating Medicine: Let’s Talk Bedpans, And Why Doctors Should Get Good With Them

As a doctor myself, writes Dr. Anna Reisman, I was embarrassed that I didn’t know how to help a patient with a bedpan. (Michaelwalk/Wikimedia Commons)

As a doctor myself, writes Dr. Anna Reisman, I was embarrassed that I didn’t know how to help a patient with a bedpan. (Michaelwalk/Wikimedia Commons)

I was visiting my friend in the hospital and she had to pee. Walking to the bathroom was not an option: She’d been told not to get out of bed, she felt weak and lightheaded, and she was attached to an IV and a monitor.

She pressed the call button and stated her problem. A voice: They’d let her nurse know. A few minutes later, I stuck my head outside the curtain and scanned the empty hallway, feeling guilty that all I could do was share her frustration.

Then someone pulled open the curtain and smiled in at us. “I need the bedpan, we’ve already called twice,” my friend said. The woman in scrubs, who turned out to be one of the doctors, said she’d take care of it. My friend and I sighed with relief.

But the doctor slipped back out. Taking care of it meant finding someone who knew how to do it. When she returned a couple of minutes later and saw that still nobody had showed up, the good doctor offered to do it herself. She fetched a bedpan and awkwardly slid the pink plastic container under my friend, the whole time apologizing that she didn’t know which end was up.

The current U.S. nursing shortage includes licensed practical nurses and certified nursing assistants, the people who usually manage bedpans. And so hospitalized patients feeling the urge to urinate may have to wait longer than is possible.

If you’re thinking this is a minor issue, think again: Holding one’s urine can set a patient up for a urinary tract infection; the physical discomfort can be a stress on an already sick body, driving up blood pressure and pulse; and waiting with a bursting bladder is a mental stress, too.

As a doctor myself, I was embarrassed that I didn’t know how to help. I didn’t learn bedpan basics in medical school.

The alternative isn’t any better: Consider the shame and discomfort of lying in cold, wet sheets until someone can change them, plus the serious health risks that include skin breakdown and infection. For patients who already have pressure sores, these complications can be life-threatening.

As a doctor myself, I was embarrassed that I didn’t know how to help. I didn’t learn bedpan basics in medical school, or at any other time during my training. I would guess that most doctors, like me, would rather volunteer to hunt for someone else to do this than just getting the job done.

No, it isn’t rocket science to place a bedpan, but it’s easy to bumble by making a mess, leaving the patient in an uncomfortable position, exposing and embarrassing, and so on. Continue reading

Buffets One Day, Vomiting The Next — Life With A Rare GI Disease

Melissa Adams Van Houten was diagnosed with a rare GI disorder in 2014. (Courtesy)

Melissa Adams Van Houten was diagnosed with a rare GI disorder in 2014. (Courtesy)

I am going to share some pretty personal information. Not a big deal to some of you, I am sure, but to me, it is huge. I am not the kind of person who does this — or at least I did not used to be. But things have changed.

In February of 2014, I spent a week in the hospital and was eventually diagnosed with gastroparesis, a disorder that slows or stops food from moving from the stomach to the small intestine.

I am guessing most people have never heard of this; I know I had not, prior to being diagnosed.

A Life-Altering Day

My life changed in ways I could not have imagined — overnight.

One day, I was able to eat at buffets, and the next day, I was unable to tolerate all foods and liquids. I was hospitalized with severe pain and vomiting, put through a battery of tests (including one particularly terrible one where they forced a tube down my nose and pumped my stomach). Eventually, I was diagnosed, but was given only a brief explanation of my illness and its treatment before I was sent home.

For the next few weeks, I was on a liquids-only diet, and was told that I had to gradually work my way up to soft foods and (eventually) solids. I am able to eat some soft foods, these days, in tiny amounts, but it is becoming clear to me that I will likely never again be able to eat “normal” foods in “normal” amounts.

Thinking About Food — Always

At first, I told myself that I would not let this stupid disease define or control me — it simply would not be the center of my life. But as time passed, I began to see how foolish this was. Every single day, every second of every day, I think about food. I see it; I smell it; I cook it and feed it to the other members of my household; but I cannot have it myself. Continue reading

She Wiped Her Nose, Then Prepped My Biopsy. Still, It's Hard To Ask The Nurse To Wash Her Hands

Hand washing before and after touching a patient is mandatory. And before and after walking into a patient’s room or touching medical equipment. (Arlington County/Flickr)

Hand washing before and after touching a patient is mandatory. And before and after walking into a patient’s room or touching medical equipment. (Arlington County/Flickr)

I was lying on my back on a gurney, getting my abdomen washed by the nurse.

She dipped Q-tip-like sticks into the brown antiseptic and then swirled them on my skin where the physician would make his incision. He would penetrate layers of skin and muscle to get into my liver and extract cells. He would send the cells to the laboratory to assess what kind of cancer I had. Eight days earlier, I had learned I had masses in my abdomen and chest. Three days earlier, I had learned the masses were cancer. That day I was on the gurney getting prepped for a liver biopsy, to find out what kind of cancer it was.

While one nurse washed my incision site, another nurse prepared the room. She was adjusting the lights, surgical equipment and my gown. And she rubbed her nose with her hand. Everyone rubs their nose. Humans unconsciously touch their nose or mouth more than 3.6 times per hour.

When we do this, we spread germs into our body from whatever we were touching before and spread germs from our body onto whatever we touch next.

I laid there and wondered if I should say something to her.

In medical school in the early ’90s, I had learned about the risk of normal nose bacteria infecting surgical sites. While on the gurney that day, I remembered a story about a patient with a massive infection in his surgical wound site. The hospital searched for the source of his Staph aureus. They found it in the surgeon’s nose. This story was told to us to remind us of the dangers of what we were seeing on the wards in medical school — which was still full of old-school clinicians who drew blood without gloves and washed their hands only intermittently.

Today things are supposed to be different. Hand washing before and after touching a patient is mandatory. And before and after walking into a patient’s room or touching medical equipment. The compulsory annual online classes for all clinicians include specific directions on how to wash your hands. There are signs on the walls and screen savers on the hospital computers reminding us to wash our hands.

But there I was, flat on my back, wondering if I should say something to the nurse. I was afraid she’d be upset with me if I said something — I was all but naked, lying on my back and pretty much in her hands. The hands that had just wiped her nose. I didn’t say anything. I tried to get my courage up to say something — but couldn’t. A few minutes passed. I decided it was too late to say anything. But I told myself if she did it again, I would say something to her.

And then she did. She rubbed her nose with her hand and then reached for the equipment table with that same hand. The equipment that would be in my liver in a few minutes.

I called her on it. Continue reading

Commentary: I Needed Help With My Autistic Son. Others Need Help Too

The author, Susan Senator, and her son, Nat (Courtesy of Ned Batchelder)

The author, Susan Senator, and her son, Nat (Courtesy of Ned Batchelder)

The winter my son Nat broke our playroom window with his head was an endlessly snowy one. He was home on school break and on sensory overload — rocking too wildly on a rocking chair, too close to the bay window. A nauseating shatter, like the crack of thin ice underfoot.

Miraculously, he was not hurt.

Nat has fairly severe autism, and back then he struggled with all the unstructured time and the oppressive indoors of a New England winter. We all did. The season of days spent inside wears on all families. But if you are also living with a child with a complex developmental disability, who is nearly non-verbal and with sensory issues, it can mean that he will likely need extra help staying safe.

Back then I didn’t realize just how sensitive Nat was to confusion and unorganized days, or how his anxiety roared inside him, jangling his nerves, forcing him to pace, to scream, or to pinch. I understand now that autism wasn’t the enemy — lack of help was. We needed someone trained in autism education, who could work directly with Nat on activities of daily living, self-calming, social skills and how to behave out in the community; someone who could also work with us on how to organize Nat’s time at home to comfort him with a better sense of order. Continue reading

Narrating Medicine: The Patient Who Peppers You With Questions Is Not Being ‘Difficult’

(andyde/Flickr)

(andyde/Flickr)

By Anna Reisman
Guest Contributor

Not long ago, I got this plea from my medical students: Can’t these patients stop with all the questions? The questions — about procedures and Googled findings and alternate treatments — were getting in the way of providing good, efficient medical care, the students said.

Some examples:

— One student described a young woman with advanced breast cancer who was so persistent in asking for tests and procedures that the team dreaded seeing her on morning rounds.

— Another student recalled a busy orthopedic clinic where he and his resident would see up to 60 patients a day. There wasn’t any extra time for patients to ask anything that strayed even remotely outside the orthopedic zone, and so any such patient was branded “difficult.”

— A third student spoke about a very old, dying man hooked up to a ventilator in the ICU whose family refused to consider a Do Not Resuscitate order.

The ‘Difficult’ Patient

There is a difference between difficult and “assertive,” I pointed out to the students. It’s good for patients and family members to ask questions, speak their minds and not dutifully accept every recommendation. It’s great that they advocated for themselves or their family members. But to the students, these patients were impeding their own best interest, and this, it seemed, was making them feel burned out even before they received their medical school diplomas.

Another young man raised his hand. He’d spent a month working in a government hospital in South Asia. There, he told us, no patients were difficult. Patients listened. You told them what they needed to do and they did it. Simple as that.

The students pondered this for a moment. Then one asked, tentatively, whether the reason we have so many patients like this in the U.S. — the kind that ask a lot of questions — might be our focus on “patient-centeredness.” Could we be giving our patients too much room to speak? At some point, he wondered, shouldn’t our knowledge, expertise and experience trump those endless questions?

I almost fell off my seat.

Not to say I don’t understand this perspective. I do. After all, these students were about to become doctors, steeped in newly acquired knowledge and eager to apply it. Continue reading