a story almost everyone can tell

 

 

The program in narrative medicine that was conceived, developed, and implemented at Columbia University under the leadership of Rita Charon, M.D., PhD. teaches medical students and residents to reflect upon and to write about illness as it affects their patients.

 



 

This goes beyond traditional training which is satisfied with an accurate diagnosis and an effective treatment plan. It involves so much more than clicking the bullets on an EMR. Exploring the patient's narrative provides insight into the ways illness/injury changes every aspect and every relationship in their patients' lives. Their sense of self. Their ability/inability to fulfill their perceived role in the family and in society as a whole. Their fears and sorrows. Where they find strength. What gives them hope. This process enables doctors to see their patients as more than interesting or challenging cases. Now they are tending the whole person--body, mind, and spirit.

 

"Stories are not material to be analyzed;

they are relationships to be entered."

~A.W. Frank~



 

This practice improves the physician's sense of engagement with his patients. It deepens empathy. It has been shown to improve physician satisfaction and to lessen the likelihood of burn-out.

 

"Writing improves clinicians' stores of

empathy, reflection, and courage."

~Rita Charon, MD, PhD~



 

But narrative medicine isn't just for doctors.

 

Everyone who works in a health care system carries untold stories with them. Nurses and aides, EMTs and first responders, and therapists in every field have important stories to tell. Even staffers such as receptionists, orderlies, and even maintenance and food service workers all have stories they could share with us.

 

"While medicine creates material

for writing, perhaps even more important

is that it also creates

a psychological and emotional

need to write."

~Daniel Mason~

 

But narrative medicine isn't just for them, either.

 

The book on narrative medicine begins with the patient's story...a story almost everyone can tell. If you have ever visited a doctor's office or an emergency room, or been admitted to the hospital, or been a caretaker for a friend or family member, reflecting on the experience can help you organize your thoughts about it. It encourages you to sort out and name your feelings about it. It clears away confusion, and that eases fear. When you tell your story and someone hears it, you both learn from it. When you write your story and someone reads it, you leave part of your burden on the page.

 

Storytelling applied to the practice of medicine is more than helpful. It is a healing process.

 

"Writing is medicine.

It is an appropriate antidote to injury.

It is an appropriate companion

for any difficult change."

~Julia Cameron~

 

jan

 

 

 

 



listen up

 

 

Story telling isn’t easy. Even the best authors sometimes struggle to put their ideas into words. Characters are complicated and emotions can be hard to express. Ask any writer. 

 

"The difference between the right word

and almost the right word

is the difference between

lightning and a lightning bug."

~Mark Twain~

With this in mind, it shouldn’t come as a surprise that patients have trouble telling the stories of their illnesses. When they try to tell us about their symptoms, they may not have the language for it. The fellow having a heart attack may describe his pain as indigestion, when the doctor is looking for words like dull, heavy, or tight to describe the discomfort. The patient who is lightheaded may describe the feeling as dizziness rather that fainting. The provider then has to determine if the patient is experiencing presyncope or vertigo. The patient who complains about pain in his sinuses may be experiencing a migraine headache. Patients don’t know what we need to hear from them about their symptoms, so sometimes the obstacle is language.

 

"Write hard and clear

about what hurts."

~Ernest Hemingway~

Sometimes the problem is denial. The fellow having the heart attack may know exactly what is happening to him, but be so scared by the prospect he unconsciously tries to make a case for something less ominous. He describes his problem as indigestion, hoping the doctor will say, "It sounds like reflux. Nothing too serious."

Fear, then, is another confounding factor. When a patient describes a symptom, the provider has a long list of details he needs to know in order to diagnose the cause of the patient’s distress. However, the patient might be more frightened by the symptom than he is suffering from its severity. Perhaps a coworker recently suffered a disabling stroke. The patient is having some tingling in his right hand so he’s convinced he’s about to have a stroke, too. Carpal tunnel syndrome doesn’t cross his mind. The tingling isn’t severe, but his fear of having a stroke is off the charts. Once the doctor addresses the patient’s unfounded fears, treatment has a better chance of success.

It’s up to the provider to figure out what is what. This explains why health care providers must be excellent listeners. We have to make an accurate diagnosis by listening clinically, and we must understand how the illness affects the patient by listening empathetically.

 

"Listen. People start to heal

the moment they feel heard."

~Cheryl Richardson~

 

 

Listening clinically involves getting the details right. Encouraging the patient to tell us about the onset of his symptoms (sudden or gradual), the duration (hours, days, or months), the severity (mild or excruciating), and quality (sharp or dull, constant or intermittent, localized or generalized). A thorough and accurate history of the patient’s symptoms is fundamental to making an accurate diagnosis.

But there’s more to it than that. Empathetic listening enables us to understand how the illness affects the patient, what it means to him, and why. Why is he in denial? What is he afraid of? How will his illness affect his job, his family, his faith? It includes:

• Reading facial expressions and body language. For instance, if the patient brings his fist to his chest when he is telling you about his heartburn, you need to think heart attack instead. It’s a classic gesture. 

www.slideshare.net

 

 

 

• Understanding the patient’s emotional state. I once had a young woman come in with a swollen black eye. She laughed it off. “I’m so clumsy,” she said. “I was jumping on the bed and hit my eye on the corner of the TV.” In fact, she had a blowout fracture of the floor of the orbit. When I asked her what really happened, she described the blow she took from her boyfriend’s fist, the fear she felt for her life. She not only needed medical care, she needed social services.

• Listening between the lines for what the patient may be leaving out. I used to ask my teenage patients whether or not they were sexually active. Invariably, the answer was, “No.” That let me off the hook. I didn’t have to ask about STDs or contraceptive practices. It saved time…but I knew it wasn’t always true. So I started to ask instead, “How many sex partners have you had?” Eight, twelve, twenty-five! I was flabbergasted. But it enabled me to begin a meaningful discussion about body image and the patient's sense of self-respect. We went over the dangers of and prevention of STDs. And I was able to offer reliable contraception. 

What difference does empathetic listening make? It gets us closer to the truth. It connects us with our patients in a meaningful way. It improves patient satisfaction and that by itself helps promote healing. It enhances diagnostic accuracy and the efficacy of treatment. It decreases the physician’s sense of frustration and ineffectiveness. And by strengthening the physician-patient bond, it decreases the rate of physician burnout.

If good storytelling is an art, effective listening is a craft. In these efforts the physician-patient partnership is forged. Health care becomes a mutual endeavor, and everyone benefits from it.

 

"You are so brave and quiet

I forget you are suffering."

~Ernest Hemingway~

jan

mopping up blood and patching up people

 

 

 

We have witnessed not one, but two, mass shootings  in the past few weeks. This should serve to remind us of the critical role our first responders, ER docs, and trauma surgeons, along with the nurses and technicians who support them, play all across our country. Their work is laudable not only because their courage and skill can mean the difference between life and death for victims of gun violence...but because it transcends race, religion, culture, and gender. And it never stops.

 

"Nothing good

ever comes from violence."

~Martin Luther~

 



The problem of gun violence in America is not new. When I was in junior high school, a shy, awkward girl in my 7th grade class picked up her father's hand gun and shot herself in the head. A boy who lived up the road from us died when the rifle he was cleaning accidentally discharged. In the city, a child died in the crossfire between rival gangs.

 

In the aftermath of the recent mass shootings--one in Pennsylvania and one in California--the AMA has again called upon physicians to take a stand against gun violence, calling it a "public health crisis" for good reason. On average, over 30,000 US citizens die in gun-related incidents each year. Many more remain injured or disabled in the aftermath of such shootings.

 

If a new virus popped up and took 30,000 lives in less than a year, you can bet public health officials would declare it a crisis...and then do something about it. Epidemiologists would jump in to examine modes and patterns of transmission. Researchers would swing into action to develop anti-viral drugs to treat the infection, and a new vaccine to prevent its spread.

 



 

Not so with gun violence. We are still just mopping up blood and patching up victims. By then, it's too late.

 

So, what about prevention? What can we, as primary care providers, do?

 

"On behalf of the gun industry,

the NRA appreciates America's

continued silence on

meaningful gun legislation."

~quotesgram~



 

The American Academy of Pediatrics suggests we ask about firearm safety as part of the clinical encounter. To raise awareness of the dangers inherent in firearm possession, and to educate parents and children about gun safety. Are there guns in the home? Where are they kept? How are they stored? It is hoped that these reminders will prompt parents to double check on safe gun practices in their own homes.

 

If this sounds easy enough, let me assure you, it is not. Years ago, when I addressed this issue as part of one well-child exam, my young patient's mother became irate. She insisted it was absolutely none of my business and had nothing at all to do with his health care. She reported me to management. This, when just weeks earlier, a child in our community died after a sibling accidentally fired a gun he found in the home.

 

"The safety of the people

shall be the highest law."

~Marcus Tullius Cicero~

 



It takes enormous courage and skill to care for the victims of gun violence in our country. It requires sensitivity and determination just to talk about it.



 jan

 

 





be careful what you click on

 

 



 

Random rant:

 

Last week I presented to a specialist as a new patient. I had to see him because of the potential toxicity of a drug I've been taking for years. I was lucky enough to have snagged an appointment right away. Unfortunately, that meant I had to fill out all the necessary paperwork when I arrived at the office--demographics, insurance information, and medical history.

 

"What the world really needs

is more love

and less paperwork."

~Pearl Bailey~ 

 

Before I even started, I was called back to the exam room...meaning the medical assistant had to run through my information and get it into the EMR before the doctor came in. It all went smoothly until she asked me how long I'd been taking said toxic medication:

 

MA:  What year did you start taking it?

Me:   I really don't remember. I've been on and off it a couple of times over the years.

MA:  But when did you first take it?

Me:   I have no idea. I'd be guessing. Maybe twenty years ago.

MA:  And when did you go off it?

Me:   (sounding just a tad exasperated) I don't remember. I don't know. I went off and then back on it several times.

MA:  But I need a date. I can't go on without the date. At least, the year.

Me:  (Thinking, so I should just make something up for you? Fabricate a date? OK, then...) Let's pretend I started taking it in 1987. (I could have said 1887 and she probably would have been satisfied...)

MA:  OK, good.

 

This may sound like an inconsequential issue to some of you...but this is the kind of thing that can lead to falsification of the medical record...inaccuracies that are prompted by a computer program. Permitted by it. Even encouraged by it.

 

"Without strong safeguards, the dream of

electronic health information networks

could turn into a nightmare

for consumers."

~Edward J Markey~



 

This isn't the first time something like this has happened to me. My own medical record includes a preop exam that states my neurological exam was normal...when it wasn't checked at all. Thankfully, I didn't have a seizure or a stroke during the procedure. How would they explain that?

 

The point is that inaccuracies in the medical record can spell disaster for a provider who is involved in a malpractice claim. Attorneys are going to question you about the details of the neurological exam you recorded but failed to perform, or the cardiac exam you said was normal even though the patient has a known mitral valve prolapse. Casting doubt on your reliability. Errors can mislead consultants and other health care providers. The patient may suffer. 

"We should all be aware

--even alarmed--

about the gaps in critical information

that may exist in any patient's

computerized medical record."

~Linda Harlzberg, MD~





Be careful about what you click on in your EMR.

 

"We strive for error-free medicine

in a world that is sometimes

all too human."

~Michael C Burgess~

 

jan

 

 

 



 

 

 

 

 

 

 

 

 

 

 

 



o, what an untold world

 

These are a few of the friends I spent my day with today. I've known them for years so, over time, they've shared their stories with me.:

• A woman whose younger brother died in her arms when she was sixteen years old after a drunk driver broadsided the car she was driving. Years later, her infant daughter started to miss developmental milestones and began to exhibit autistic behaviors, rocking and repetitive head-banging. The doctors diagnosed her with Pervasive Developmental Disorder, and later, when she started kindergarten, with Autistic Spectrum Disorder. She didn’t speak until she turned six. As if that weren't enough, at the age of forty, this woman developed pain and swelling in her right breast. She couldn’t imagine how she might have bruised herself there. Two days after she saw her doctor about it she underwent an urgent breast biopsy. She prayed for the reports to be negative because she still had three children at home, one of them with special needs. But the biopsy was positive for breast cancer. The doctors cautioned her not to get her hopes up. “Go home,” they told her. “Think about how you want to say goodbye.”

 

"Out of suffering have emerged

the strongest souls."

~Kahlil Gibran~

• A woman whose father abandoned the family when she was just a child. When she finally tracked him down years later, he agreed to meet with her, but she never got to see him alive. He died unexpectedly of a massive heart attack just days before they planned to reunite. 

• A nurse whose son died of leukemia when he was twelve years old.

"The practice of medicine is an art, not a trade.

A calling, not a business.

A calling in which your heart

will be exercised equally

with your mind."

~Sir William Osler~

• A young man who was involved in a car crash when he was in high school. He suffered a brain injury so severe the doctors didn’t think he would survive. He spent weeks in a coma in the intensive care unit until he was transferred to an in-patient rehab facility where the doctors thought he would remain until he died. Weeks after the accident, even though it violated the hospital's rules, his family smuggled the boy's dog into his room. Three days later, he opened his eyes, and went on to complete a full recovery.

"Dog is God spelled backward."

~Duane Chapman~

I wasn't making rounds at the hospital today. I wasn't attending a medical conference. I started off this morning at a spiritual retreat. On the way home, I stopped off for coffee. Then I went to the grocery store. Proof that we encounter people every day whose stories we may never get to hear. We pass them on the street or in the store. We invite them along for a cup of coffee. We work with them every day. There is nothing unusual about the way they dress, nothing peculiar about they way they speak, nothing strange about their beliefs that would set them apart from all the rest of us.

But until we know their stories, we don't know them.

 

"O, what an untold world there is

in one human heart."

~Harriet Beecher Stowe~

 

jan

 

are you a superhero?

 

 

True story:

 

It happened again today. I was in the grocery store when one of my patients from way-back-when rushed up to say hello. She went on to tell me how much she missed me as her doctor, and then she told me her story. She had recently visited our office for some minor problem that had nothing to do with her heart. In fact, she didn't know she even had a heart condition. But then, out of nowhere, she suffered a major heart attack while she was in the bathroom. She was rushed to the hospital where she underwent surgery that saved her life.

 

She couldn't say enough about how grateful she was for the care she received...immediate, thorough, and skilled. Also, compassionate and caring. She still couldn't get over how lucky she felt to have been in the right place at the right time. I told her it wasn't the first time that something had happened in our practice. One patient collapsed in the parking lot as he was getting out of his car...and lived to tell the story. Another time, a patient's heart stopped beating as I was taking his pulse.

 

 

Another patient was complaining of indigestion when, in fact, he was experiencing a heart attack in evolution.

 

"Having a heart attack felt

nothing like I how

I thought it would feel."

~www.myheartsisters.org~

 



The point is that, as health care providers, we take incidents like these in stride, while our patients literally take them to heart. It's gratifying to be able to help, but we don't see ourselves as heroes or gods. Patients sometimes do, though.

 

If you don't think of yourself as a superhero, think back. Whose life did you save? How did it happen? How does it make you feel? Tell us the story.

 

"You are braver than you believe,

stronger than you seem,

and smarter than you think."

~Winnie the Pooh~

 

jan



 

 

 

 

 





get something down...anything

 

 

I've been posting a lot about the importance of telling your story...the one that needs to be told, the one that won't go away, the story others need to hear. But have I mentioned how hard this can be to do? Have I told you how hard it is to get started? How long it can take? How confusing it can be?

 

"If I'm gonna tell a real story,

I'm gonna start with my name."

~Kendrick Lamar~

 

The story I need to write has been nagging at me for over 65 years...since I was three years old. That's when my brother and I both went into the same hospital with the same illness at the same time. The story explores the divergent paths we took through life in the aftermath of our shared experience. And how long it took to share our separate truths.

 

It begins:

          "The aftermath of childhood illness can linger for a lifetime. You think you’re over it when, out of nowhere, you remember the way the nurse rolled you onto your side and bared your little buttocks. First came the jab, then the dull ache that lasted until the next shot was due. One moment you’re a fully functioning adult. The next, you’re a sobbing three-year old.

          Like a stain that won’t come out, like a fog that never lifts, it stays with you. It can send you down a path you never intended to follow. It has the power to transform you into someone you never wanted to be. The memory of it catapults you back to a time you'd rather forget."

I started working on this project in earnest six years ago. This is as far as I've gotten. The details are vivid in my mind, the story arc is clear, and I already know how it ends. What, then, is so difficult about it?

 

I think the hardest part is convincing yourself that your story is worth telling. And after that, engaging the reader. Convincing him that your story is also his. Compelling him to read on in order to make sense of his experience in light of yours. Finding meaning not so much in the recitation of events, but in their cause and effect, in your process and outcomes, in the truth you summoned the courage to share.

 



"When you stand and share your story...

your story will heal you

and your story will heal somebody else."

~Iyanla Vanzant~

 

 

For reasons that will take a full-length book to explore, my brother spent most his adult life battling the anxiety, fear, shame, and insecurity that followed his hospitalization, as well as the addictions that helped him cope. His story is an epic quest for healing.

 

I went on to study medicine.

 

If you are mystified by the way your life unfolded as it did, if you have spent sleepless nights reflecting on the people, places, and circumstances that shaped you as a human being, if you have ever wished things had been different, you have an important story to tell.

 

"Other people are going to find

healing in your wounds.

Your greatest life messages

and your most effective ministry

will come out of your deepest hurts."

~Rick Warren~

 

If you are discouraged about telling your story because you don't know where to begin, start by writing something. Anything. Start with your name.

jan