Narrating medicine

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Anguished Reflections Of A College Crisis Counselor: A Student ‘On The Rooftop’

(Romain Caplanne/Flickr)

(Romain Caplanne/Flickr)

By John Rosario-Perez
Guest Contributor

John Rosario-Perez (Courtesy)

John Rosario-Perez (Courtesy)

We live and die for the weekend. Nowhere is this more true than on college campuses, where students are in hot pursuit of the pleasure principle. Chasing excess is a sport as well as a rite of passage. But the 72 hours from Friday night to Monday morning can also be among the most perilous, a portal to despair with no exit. A college crisis clinician for eight years, I encountered many students who suffered the weekend as exiles.

Over time I listened to dozens of anguished stories, so many that I could almost predict their twists and turns. Some were as lurid as a tabloid headline. Others landed faintly on the ear, a circuitous tale with multiple digressions before arriving at the dreaded destination — pain. Their narratives fell under many rubrics — crushed idealism, first love gone awry, dreams vanquished by failure. Betrayal.

To the casual observer, such confidences might seem transient and overblown, hysterical laments tied to youthful indiscretions. But to those overcome by despair, isolation can often feel permanent and unending, a life sentence without reprieve.

2 AM

Their calls often come in the middle of the night. By force of habit, I sleep restively, my ear cocked in anticipation of the mobile pager’s trill. Each time it summons me, I try to suppress a vague sense of dread and the panicked feeling that I don’t really know what to do despite my years of experience. A rush of adrenaline gives me a heightened sense of alertness and danger but also of being put on the spot.

Like so many other nights, I rouse myself from half-sleep and strain to collect myself in the dark. The phone lies on the bedside table, but my fingers, as reluctant as an arthritic’s, resist reaching for it. After speaking with the campus police, I dial a number.

“Hello. You called the crisis line?” I ask. “How can I help you?”

“It’s my roommate, Kevin. I’m not sure, but I think he’s suicidal,” a trembling voice says. “What should I do?” Continue reading

Narrating Medicine: How Cultural Differences Challenge Doctors

By Dr. Marjorie S. Rosenthal
Guest Contributor

The pediatric resident was frustrated.

On the exam table was a 6-month-old baby — quite overweight. In fact, the child was heavier than an average 1-year-old. But his mother just laughed when the resident asked how she was feeding the baby.

When the resident and I looked at the medical record, we saw that for months residents had been discussing feeding with the mother. Telling her that she should stop formula feeding because her breast milk was more than sufficient. Telling her not to give solid foods because her breast milk was enough. And telling her that if she was going to give the baby formula or solid food, she should try to pay attention to when the baby’s cry means hunger and when it means a wet diaper or a need for attention.

Over one-third of adults and about 17 percent of children in the United States are obese. And since people who are obese have more high blood pressure, diabetes and heart disease than their peers, it’s not surprising that there are 11 million office visits per year for adults with obesity.

Yet according to a new CDC report, only 40 percent of these 11 million visits for obesity include a discussion of diet and exercise.

Dr. Marjorie Rosenthal (Courtesy)

Dr. Marjorie Rosenthal (Courtesy)

Many health care providers don’t want to talk to their patients about diet and exercise because they think the patients may feel judged. And sometimes doctors don’t talk about fitness and nutrition because they actually think talking won’t change anything. Which makes it safe to assume that office visits for obesity rarely include a discussion about the life experiences of the patients and the parents of patients. This suggests that a critical issue — and a key part of any treatment plan — is never addressed.

Parents’ medical history has always been an important aspect of a child’s medical care. But the central importance of all this has only recently emerged: New research has shown how life experiences affect brain development and hormone responses and how that affects parenting behavior and the health of the child in the next generation.

It’s hard enough to do this with families who speak English and come to the doctor’s appointment ready to talk about themselves. With this overweight 6-month-old, it was even harder: The resident was using a Swahili phone interpreter and the mother was a refugee.  Continue reading

Commentary: Getting Off Psych Meds Was The ‘Hardest Thing’ She’d Ever Done

By Dr. Annie Brewster

By the time Laura Delano was 25, she was taking five psychiatric drugs: an anti-depressant, an anti-psychotic, two mood stabilizers and an anti-anxiety medication.

But after years entrenched in the mental health system, and defined by her psychiatric diagnoses, Laura finally got off the medications and, as she says, began “recovering from psychiatry.”

For background: Laura grew up in a wealthy Connecticut suburb in a family of high achievers. She was a nationally ranked squash player and student body president. But in her teen years, life got more complicated as she struggled with questions about her own identity.

Laura Delano weaned herself off psychiatric drugs and says she shed her identity as a “professional mental patient.” (Courtesy)

Laura Delano weaned herself off psychiatric drugs and says she shed her identity as a “professional mental patient.” (Courtesy)

She felt burdened by social and academic expectations, and started to act out. She cut herself as a way to “control” her out-of-control world, and was ultimately sent to a psychiatrist by her parents. At 14, she was diagnosed with bipolar disorder and prescribed powerful psychiatric drugs, including the mood stabilizer Depakote and Prozac.

The medication side effects led to additional problems and “symptoms,” which in turn led to more medications, Laura says, and she began to lose herself. She felt defined by the diagnoses she continued to collect: bipolar disorder, borderline personality disorder, substance abuse disorder and binge eating disorder.

Laura’s early 20s were marked by multiple psychiatric hospitalizations and ultimately a suicide attempt. Her only identity was a self-described “professional mental patient.”

But then things began to change.

Over five years ago, Laura weaned herself off psychiatric drugs and shed her diagnostic labels. For her, this has been a spiritual journey involving the cultivation of self-acceptance, self-love and honesty. “It is the hardest thing I have ever done,” says Laura, now 32. But she feels happier, more connected and more engaged in the world. Here’s a bit more from our interview:

“When you are told that your brain is broken — basically the seat of your soul, your mind, the part of you that shapes everything about who you are — when you’re taught to believe that that’s broken, and that you can’t trust yourself, you can’t trust your emotions, you can’t trust your mind, I mean it instills in you just a profound fear. Over all these years I developed this relationship of faith in the mental health system and no faith in myself, and tremendous fear of myself. And so unpacking that has been at the heart of this whole journey, realizing, ‘Wait a minute…If I’m not broken and if the struggles I’ve gone through aren’t symptoms of an illness, what are they? Maybe they are actually important and meaningful…maybe they are telling me something.’ I began to listen to my pain, and to listen to my darkness and it [has]  brought me back to this spiritual journey which I think was beginning way back when I was thirteen… Who am I? How do I fit into this world? What are the stories I have been taught to believe about how you’re meant to live your life, and what it means to be normal and worthy and acceptable…”

Personally, I’m moved by Laura’s story. As a practicing internist, I often rely on psychiatric diagnoses and medications. In my clinical practice, I have seen psychiatric medications reduce suffering and save lives. But it’s been useful to step back and reconsider my filter on these issues.

From day one of medical training, we are taught to fit our patients into neat diagnostic categories whenever possible. The goal of our patient interactions, we learn, is to sift through and distill all that we see and hear in order to home in on a diagnosis. This categorization can be helpful in directing our care, of course, but it can also be limiting, and even dangerous. Rarely does a diagnosis fit perfectly, yet all too often in our culture one’s diagnosis becomes indistinguishable from one’s identity.

Labels have power. With mental illness, diagnostic criteria are particularly difficult to define and identify. Truthfully, our current understanding of the brain and the biochemistry behind mental illness is limited. There are no clear markers to measure and quantify. Instead, we must rely on subjective interpretation of behavior.

And yet, psychiatric labels abound. It is estimated that one in four adults, or approximately 61.5 million individuals, and one in five teens between the ages of 13 and 18, meet criteria for a diagnosis of mental illness within a given year.  Continue reading

What's Next? In Limbo With Syrian Refugees Who Have Spinal Cord Injuries

In this Jan. 14 file photo, Syrian refugees wait to be approved to get into Jordan. In the Jordan capital of Amman, Dr. David Scales treated patients who had suffered spinal cord injuries in the Syrian civil war. (Raad Adayleh/AP)

In this Jan. 14 file photo, Syrian refugees wait to be approved to get into Jordan. In the Jordan capital of Amman, Dr. David Scales treated patients who had suffered spinal cord injuries in the Syrian civil war. (Raad Adayleh/AP)

By Dr. David Scales

“Do you eat eye?” the man asked me, tearing meat away from a sheep’s skull.

“No, I do not eat eye,” I replied, pleased to have been given an out. “Thank you.”

I was the guest of honor at a small apartment on the outskirts of Amman, Jordan, where a group of about 15 Syrian refugee men all live together. Their uniting bond is their paralysis: All have spinal cord injuries from fighting in the Syrian civil war.

The celebratory meal Dr. David Scales was offered by Syrian refugees included sheep stomachs, eyes, tongues and skulls. (Courtesy David Scales)

The celebratory meal Dr. David Scales was offered by Syrian refugees included sheep stomachs, eyes, tongues and skulls. (Courtesy David Scales)

A few of the men had been my patients back in 2013, when I volunteered at a spinal cord injury apartment in Amman. At the time, their situation struck me as hopeless. I had good reason to feel that way — but I turned out to be wrong.

People with spinal cord injuries have complicated conditions that require special beds, cushions to prevent bedsores, physical therapy, wheelchairs, medications and more. In the United States. it can cost tens of thousands of dollars a year for each patient. For some, the first year alone can cost upwards of $100,000.

In Jordan, I thought, things could only be worse. There’s no primary care, and no consistent medical care for these men except for hospital visits. Yet their condition puts them at risk for myriad complications.

They all have tubes in their bladders because spinal cord injuries make them unable to pee. These tubes are nests of bacteria, leading to repeated infections.

Now that they aren’t using their leg bones, their bodies start to dissolve them, making them brittle. The extra calcium in their blood from the dissolved bone makes them prone to kidney stones.

Nerve pain from their severed spinal cords can shoot through their legs, much like that vibrating, electric pain you get from hitting your funny bone. Worse, sometimes that pain is constant. Lacking nerve stimulation, their muscles can become contracted, causing painful cramping.

And Jordan is no safe haven for them. No one knows exactly how many Syrian refugees with spinal cord injuries are living in Jordan, but we do know that many remain hidden. As former fighters that crossed into Jordan illegally, they could be deported back to Syria or confined in a special refugee camp if they are discovered by Jordanian authorities.

Many refugees are injured: According to a study published last year by Handicap International, about 1 in 15 Syrian refugees living in Jordan was hurt in the war, 72 percent of them men.

When I left Jordan in the spring of 2013, many of the patients from the spinal-cord injury apartment where I’d volunteered were destined to scatter to wherever they could find support and housing. Given the daunting risk of complications, I doubted I’d ever see most of them again.

But on a recent visit, I was surprised to see how well some of the guys were doing, many of them resettled into a different apartment in the suburbs of Amman,

Consider Yasir. He’s kept most of the urine infections at bay through some unorthodox antibiotic use; antibiotics are available over the counter in Jordan. He’s also gotten rid of his bedsores and takes no pain medications. Even without the proper equipment and cushions, he’s kept the bedsores away. In short, he’s done an amazing job with what was available to him. Continue reading

Narrating Medicine: What I Want You To Know About My Crohn’s Disease

Grace Herman (Courtesy)

Grace Herman (Courtesy)

Grace Herman, of Newton, was diagnosed with Crohn’s Disease at the age of 16. At first, she focused the majority of her efforts on learning to anticipate and cope with the various struggles of living with a chronic disease: the nausea and pain throughout her body, and overwhelming fatigue. Now 24, Grace focuses much of her time on maintaining an overall healthy lifestyle — she has found exercise to be a fantastic way to maintain her health, reduce her stress, and stay attuned to warning signs of illness. A 2014 graduate of McGill University, Grace is now a clinical research coordinator for the Substance Use Disorder Initiative at Massachusetts General Hospital.

Listen above to Herman and her father, John, talk with Massachusetts General Hospital psychiatrists Eugene Beresin and Steve Schlozman about living with a chronic illness.

Here, Grace offers some tips to parents and children on dealing with a chronic illness:

Don’t ‘Google It’

There is no greater jeopardy to your peace of mind than the search function on Google. This was the first thing my doctors told me and I must emphatically endorse their advice. Almost a decade has passed since my diagnosis, and still, the arrival of an unfamiliar pain or symptom tempts me to search for an answer from the most accessible, but not necessarily the most reliable, source. Often, I’ll search instead of picking up the phone to call one of my care providers. And all too often this delay in reaching out has rendered me physically sick. Left to my own devices, I have also been plagued with crushing anxiety about everything I might have. Often, it’s not the case: As one of my amazing physicians, Dr. Annah Abrams, often says, “Look for horses before zebras.”

Choose The Right Doctor

A huge part of finding security in living with a chronic disease is having the right person to assuage your inevitable fears. Parents and children should know that you have the right to take your time and decide who is the best fit. This may not necessarily be the first doctor you see, or even the doctor who makes the initial diagnosis. Try to find someone with whom your child (and you) feel safe — someone you want to talk to. At first, conversations about your medical condition may be awkward and uncomfortable; however, the right doctor will know how to handle this and begin to build a dialogue based on trust and empathy.

Even after you have found a doctor, know that the first few years following a diagnosis can be the most difficult; after all, you are trying to determine (sometimes through trial and error) which treatments are the most effective. Bolster yourselves through this time of uncertainty with the knowledge that you have the best people on your side working toward a common goal. Continue reading

Something Was Wrong With My Autistic Adult Son, But He Couldn’t Say What

Nat Batchelder and his mother, Susan Senator, at the Special Olympics, Foxborough, Mass. (Courtesy of Nat Batchelder)

Nat Batchelder and his mother, Susan Senator, at the Special Olympics, Foxborough, Mass. (Courtesy of Nat Batchelder)

By Susan Senator
Guest Contributor

Something was wrong with Nat.

I got the call about my 25-year-old severely autistic son just as I was parking, about to meet a friend for coffee. It was from Richard, the day program director. Like many adults with significant disabilities, Nat spends his weekdays at a day program, an organization that helps his employer so that he can work — he does carriage return at a local Shaw’s. When Nat is not working at Shaw’s, he is out in the community with support staff and others individuals in his program, volunteering at Meals on Wheels and various activities.

Richard got right to it: “I don’t know how to tell you this. But Nat came in with puffy eyes and was really not himself, you know the way he’s been lately.”

A poisonous feeling started flooding my throat. Oh, I knew.

Richard continued: “He was hanging his head, quiet, not talking to himself, not walking around. I asked him some ques­tions — he started crying a little.” Nat always talks to himself and paces. Although he can talk a little, for the most part you have to really know him to figure out what he’s trying to say. He is very severely impacted by autism and some developmental delays.

“What questions?” I broke in, wanting to cry myself. But I already kind of knew.

Richard had asked Nat questions about whether someone had been touching him, hurting him.  Continue reading

Opinion: How To Understand The WHO’s Zika ‘Emergency’ (And Not Be Terrified By It)

Jaqueline Vieira, left, watches as her 3-month-old son Daniel, who was born with microcephaly, undergoes physical therapy at the Altino Ventura foundation in Recife, Brazil. (AP Photo/Felipe Dana)

Jaqueline Vieira, left, watches as her 3-month-old son Daniel, who was born with microcephaly, undergoes physical therapy at the Altino Ventura foundation in Recife, Brazil. (Felipe Dana/AP)

The director-general of the World Health Organization has declared Zika virus a “public health emergency of international concern” — a PHEIC, pronounced “fike,” rhymes with spike, if you want to sound like a member of the WHO emergency committee.

It’s natural to be concerned when the WHO declares an epidemic — it has only done so three other times in its history: the 2009 influenza outbreak, an upswing in polio cases in 2014, and the West African Ebola outbreak in 2015. The question is: What makes the WHO concerned and how concerned should we be?

In this case, the disease itself is not as scary as the complications that have been linked to the virus — associations that have not yet been confirmed. Declaring a PHEIC allows the WHO to coordinate the international response, release emergency funds to better study the virus and confirm those potential complications as quickly as possible.

Here’s what we know. First, we know the virus is spreading quickly. The mosquito that carries the virus can be found from South America up to our hot and humid southeastern states in the U.S. And because the virus only arrived in the Western Hemisphere in 2014 — perhaps because of the World Cup or other sporting events — no one here has immunity to it, making it easy for mosquitoes to spread the virus. Some experts believe the virus can spread throughout the Americas, wherever the mosquito lives.

All this makes Zika sound scary, but we also know that up to 80 percent of people who catch the virus do not even display any symptoms. Those that do tend to have a mild illness with joint pain, a rash, red eyes and a fever, all of which resolve in four to seven days. No deaths have been reported so far that directly link to the virus. This is a far cry from Ebola, which causes a hemorrhagic syndrome that leads to death in as many as 50 percent of cases. Zika virus is worrisome in that it may cause horrible birth defects, but, put simply, it is not as scary as Ebola.

Still, it is the unknown that also concerns the WHO. Continue reading

Related:

Lost In Translation: How Foreign-Speaking Patients Suffer Without Medical Interpreters

Hospitals take different approaches to support people with low English-speaking ability. In this 2004 photo, medical interpreter Carmen Diaz interprets for Spanish-speaking patient at Temple University Hospital in Philadelphia. (Bradley C. Bower/AP)

Hospitals take different approaches to support people with low English-speaking ability. In this 2004 photo, medical interpreter Carmen Diaz interprets for Spanish-speaking patient at Temple University Hospital in Philadelphia. (Bradley C. Bower/AP)

By Dr. David Scales

When I met Mr. Y., he was sitting up in bed, sweating and breathing quickly. An elderly, Russian-speaking man, he was admitted to the cardiology ward at a large hospital where I was working. His blood pressure was dangerously high and he struggled to breathe. His fear was instantly apparent in his wide blue eyes. Panting, he told us that he had liver pain, pointing to just below the ribs on his right side.

It’s unusual for patients to complain about liver pain. In broken English, Mr. Y. explained that it began after starting new blood pressure medications a few months ago. But his chest X-ray told a different story. His lungs were drowning in fluid — the likely reason why he was so out of breath — and that couldn’t have been caused by the medications he was so worried about. Having already perused his laboratory results, his condition seemed like a straightforward case of heart failure, but I quickly realized admitting Mr. Y. would be linguistically and culturally complex.

I needed to understand what made him so short of breath, and why he thought his medications caused the problem. But no in-person interpreter was available for another hour and a half. The telephone interpreting service at this hospital was designed to be accessible — the interpreter can be paged from any hospital telephone and should call back. Yet, no one had called back after my two attempts. I imagined they were busy interpreting for other patients. In the meantime, Mr. Y. continued to pant and sweat, leaning forward in bed to help his breathing.

Reluctantly, I asked his adult daughter if she would interpret for me. She agreed, but was clearly reticent; her hesitance and discomfort apparent as she stumbled over questions about her father’s recent urinary and bowel habits. While I speak no Russian, I became suspicious of misunderstandings when she interpreted my question about previous “heart failure” as “infarkt,” which sounds like a medical term for a heart attack.

“Family members may struggle to interpret accurately when family or cultural expectations are upset by medically routine, but personally embarrassing questions.”

I know of studies showing patients suffer when clinicians do not use interpreters or use untrained, informal interpreters like family members. I learned this during medical interpreter training and in my own experience volunteering as an Arabic interpreter with Iraqi refugees in New Haven and Syrian refugees in Jordan. As was the case with Mr. Y.’s daughter, family members may struggle to interpret accurately when family or cultural expectations are upset by medically routine, but personally embarrassing questions.

As a trained interpreter myself, it is painful and frustrating when good interpreter services are not available. But it isn’t just a dearth of interpreters — it’s also a lack of time that presents challenges to providing good care to non-English speakers. If I had a leisurely day I could have waited or returned, but on an adrenaline-fueled day on call, waiting for the interpreter was not possible. I had to balance my limited time with Mr. Y. against preparing for the three other patients I expected to be admitted at any minute. Worried this would be my only chance to hear his story, I put my interpreter training aside.

Long waits for in-person interpreters, an unreliable telephone interpreting system and the pressure of three other sick patients waiting to be admitted put both my resident and me in the uncomfortable position of just “getting by.” I had enough information to treat his illness but not enough time to understand how he connected his liver pain to his new medications.

Interpreters are easier to obtain with better technology. One analysis points out that physicians tend not to use interpreters much in the system I was using. It’s where the patient speaks to the interpreter over the phone then passes the phone to the physician for interpretation. Advancements in technology to two handsets and videophones now bring the telephone interpreter into the room with my patients and me. Some studies show these technological improvements have increased the use of interpreters by physicians. In one small study, placing a dual-handset phone at every patient’s bedside led to a fourfold increase in the use of telephone interpreter services without a decline in demand for in-person services. Continue reading

Space Going Fast: Launch Event For Our New Feature, ‘Narrating Medicine’

(Dan Hodgett/Flickr)

(Dan Hodgett/Flickr)

Sure, you may be feeling partied out around now, but in a month, the holiday hyper-cheer will have faded from memory and you’ll be ready to interact with people again, right?

So here’s an invitation to a special CommonHealth event at WBUR: The launch of our new feature, Narrating Medicine, a platform for first-person writing from across the health care spectrum. Interested? You might want to decide quickly, and register here; more than half the 100 seats are already gone. Here’s the official invitation text:

You may be the next Oliver Sacks. You may be a health care provider or caregiver who needs to share some hard-won wisdom with the public. Or who just needs some catharsis to fight burnout.

Whatever your reasons for wanting to write, you’re invited to the official launch of Narrating Medicine, Jan. 26, 7-9 p.m., at WBUR, 890 Commonwealth Ave. in Boston. Light refreshments will be served.

HOUR 1: BRIEF TALKS

CommonHealth co-hosts Carey Goldberg and Rachel Zimmerman introduce Narrating Medicine and explain how it will work. CommonHealth, which averages close to a million clicks a month, will provide editing and audience, including for possible on-air versions of some stories. Writers will share their stories and retain copyright.

We’ll hear from local luminaries who have already ventured into this territory:

Dr. Annie Brewster
Drs. Gene Beresin and Steve Schlozman
Dr. Elissa Ely
Dr. Elizabeth Gaufberg
Dr. Suzanne Koven
Dr. David Scales

And we’ll hear from a legal expert on the first question many writers have: What about HIPAA?

HOUR 2: WORKSHOPS Continue reading