Saturday, July 23, 2016

when to think outside the box

Last week I talked about the history of the present illness, or more appropriately, the story of the present illness. This cannot be adequately recorded using a bulleted list of oversimplified prompts (What are your symptoms? When did they start? How often do they occur? How long do they last? What kind of treatment have you tried?). The story also needs to take into consideration the patient’s expectations for recovery, his fears, the misconceptions he may have about his illness, and the effect it may have on his family and friends, his ability to work and his willingness or reluctance to engage in treatment.

As if that weren’t hard enough, the standard medical record goes on to explore three other histories that influence the patient’s illness:


Here the provider is looking for a history of previous illnesses, surgery or injuries that might have led to the patient’s present illness or have predisposed him to problems later on. Perhaps he was treated for a childhood cancer that increased his risk for a second malignancy later in life. Maybe it was an accident that required surgery for abdominal trauma that predisposed him to the occurrence of a bowel obstruction later on. Maybe a case of rheumatic fever as a child damaged a valve in his heart leading to heart failure years later. The possibilities are endless.

The past medical story may sound a little different, though. In my brother’s case (see my previous posts), he suffered bouts of anxiety and depression all his life but no one understood why. He was ashamed to tell his story so no one could help him. It didn’t seem possible that his anxiety and depression had anything to do with the episode of rheumatic fever he experienced when he was five years-old. Not until he told me about the fear, dread, and hopelessness he suffered way back then did we uncover the truth together…that, as a child, he misunderstood what was happening. He was sure he was going to die, and the fear of death had stalked him all his life. Once he understood the disease and how it was treated back then, once he accepted the fact that his heart was healthy, recovery from the emotional and psychological aftermath of the illness was possible.


This is important for the provider to explore because some conditions tend to run in families. Some problems are passed on from generation to generation. Genetic disorders come to mind, but so should alcoholism, certain cancers, and some mental health problems. Their occurrence in a relative may raise the risk for other members of the family.

The family story, though, may be more complicated. In her landmark book “Narrative Medicine—Honoring the Stories of Illness,”

...Rita Charon sites a patient who presented with abdominal pain, weight loss and diarrhea. Because his uncle had died of pancreatic cancer he assumed he had the same thing and he believed that death was imminent. Having watched his uncle suffer through the terminal stages of the disease, the patient chose to die of it as quickly as possible. What surprised him was the ease with which he made this decision and how complacent he was about the end of his life. When testing revealed a benign and easily treatable condition, he was forced to confront his masked depression and passive suicidality.


Here the provider is looking for a history of smoking, drug and alcohol abuse, dietary habits, exercise, domestic violence, sexual preferences and habits, and occupation, all of which can adversely affect the patient’s health.

This is where the patient’s story gets complicated. He may be ashamed to admit to unhealthy habits and practices. He may feel guilty if his health has suffered because of them. He may lie about it. For these reasons, it may be harder to pull this part of the history out of the patient, and even harder to motivate him to change.

I had been seeing a patient for years, trying unsuccessfully to lower her triglyceride levels. We discussed her diet and exercise routine in detail at every office visit. Even medication didn't help. It was a mystery until she admitted to consuming a bag of chocolate chips every day.

Every. Day.

I was flabbergasted. Had she failed to make the connection? Was she in denial? The truth can sometimes be hard to come by.

It’s a monumental task just to take a good medical history. Then you still have to conduct the physical examination, order tests and create a treatment plan. And that takes time.

Nowadays, for speed and convenience, the medical record allows the provider to simply click on a little box next to the problem:
                                                          tobacco use
       alcohol use
       illicit drug use
       caffeine intake

But this doesn’t give you the real picture. Sometimes you have to think outside those little boxes and color outside the familiar lines to get the patient's whole story.

“It is more important to know what patient has the disease
than to know what disease the patient has.”
~William Osler~

Sunday, July 17, 2016

the story of the present illness

The story of my life during the years leading up to my retirement could have been recorded in ten-minute sound bites, patient after patient, day after day. This was in keeping with the trend toward abbreviated discourse, 140 character tweets, and snarky comebacks that have come to replace the leisurely, thoughtful exchange of ideas that human beings have always enjoyed, and sometimes depended upon.

In medicine, the written or dictated patient note has been largely replaced by the electronic medical record (EMR). Nowadays, rather than narrating the patient’s story, you navigate his data base with a series of clicks that pull up a confusing array of bulleted lists, complicated charts, and sketchy details.

This is intended to expedite what has been ruthlessly abridged to a ten-minute office visit. After all, as physicians, we have productivity quotients to meet and income to generate. That forces us to see more patients faster and to learn less about them at the same time.

It wasn’t always this way, though. There was a time, not many years ago, when I could scan my schedule for the day and envision every patient I was scheduled to see. I knew them that well.

With a quick glance at the chart I was able to recall who was getting ready to start chemo. She’d presented with palpitations and chest discomfort that could have required an extensive cardiac work-up. Instead, we discussed the anxiety she felt having watched her mother die of the same cancer despite having consented to the same treatment. My patient’s heart was fine. Her family history (a.k.a her story) made the diagnosis. Try teasing that information out of an EMR.

I knew instantly whose intractable headaches began the day she discovered the cigarette burn on the sweater her ten year-old wore to school that day. I could have run every test under the sun and prescribed every medication known to mankind, but unless we addressed the problem she was having with her child, nothing would have helped.

I remembered it because I'd asked about her family, she'd told me the story, and I'd written it into the chart.

This isn’t just idle chit-chat. It’s not a waste of time. In medical jargon, it’s called “the history of the present illness” but it could just as well be called “the story of the present illness.” And it should interest more than just writers. Research has shown that patients require fewer medications and fewer follow-up appointments when they are allowed, indeed encouraged, to tell their whole story. Patient satisfaction improves. And it improves the odds of getting the diagnosis right.

This should appeal to the CEO’s and CFO’s of hospital health systems because in the long run, it saves time and money. (More on that pet peeve later...)

Good history taking is the key to excellence in medical care. Every patient is embedded in a family, a community and a culture, each of which affects their health. All patients experience illness in terms of their expectations, beliefs and hopes. They know all about fear, shame, anger, guilt and despair. Every one of them deserves our attention, respect, expertise and honesty.

Each and every one of them has a story to tell and a lesson to teach. And that takes time.

"You are not your illness.
You have an individual story to tell.
You have a name, a history, a personality.
Staying yourself is part of the battle."
~Julian Seifte~

Sunday, July 10, 2016

necessary revisions

My brother’s story, and mine, too, began when we were both hospitalized with rheumatic fever as children. My illness was mild so I assumed his was, too. When I left the hospital, I thought he would, too. So I didn’t understand why we left him behind the day I was discharged. No one explained it to me and I was too young to ask.

The narrative continues:

“In fact, fifty years passed before I learned the truth. As life would have it, we drifted apart over the years. I stayed up north; he moved south. I studied medicine; he took up engineering. I bore three children; he raised two. Separated by time, distance, and happenstance we seldom spoke. When we did, we exchanged news about the weather, our work, and our children. Nothing that hinted at trouble.

It wasn’t until our mother’s health failed, and with it her memory lapsed, that my brother and I reconnected in order to share the decisions we needed to make regarding her care. It wasn’t until we safely moved her to a nearby nursing facility that we finally spoke. Having spent the week sorting through her possessions, and with them, our memories, we sat on the front steps of our empty childhood home and popped open a bottle of good red wine.

Peter took a sip, leaned back against the splintered railing, and broke his silence.

“This is where it all started, you know?” he said. “In this God-awful nightmare of a house.”

This nightmare of a house? Our childhood home in the country with its sunny yellow kitchen, eastern exposed windows, and sweeping front porch, a nightmare?

On the porch steps that night he told me how he’d coughed up blood in the hospital. How he thought he was going to die because no one explained how something like that could happen or what it meant, and he was afraid to ask. Instead, he suffered in silence, in confusion, in terror, and he never let it show.

Until he spoke to me that night, no one knew what it was like for him to have been alone with his thoughts as a child, left to wonder how long he had to live, why no one prepared him for death, why no one seemed to care. None of us understood how fear and dread were chiseled into his heart like the epitaph he believed would appear on his gravestone the day I left the hospital without him.

The Children's Hospital of Buffalo
As the sun set, my brother described the joy that washed over him like a passing shower on a summer day when he learned he was well enough to leave the hospital. Then, with the next breath, he sobbed as he described how relief turned to disappointment, disappointment to sorrow, and sorrow to despair when he learned that he would be kept in bed, in a darkened room, without visitors for a full year in order to rest his weakened heart when he got home.

 “That room they put me in?” he said, referring to a dark, drafty room on the first floor that caught the north wind. “They pulled the shades down and shut the door and left me in there alone.” His gaze locked onto mine. “I thought they brought me home to die.”

I’m certain Mother Earth wobbled on her axis the moment those words left his mouth. I felt it in my heart.”
The point is that the stories we tell ourselves can have devastating and long lasting repercussions so it’s important we get it right. Peter suffered bouts of depression and anxiety all his life because of the assumptions he made about his illness when he was too young to have known better. He fell victim to addictions in an effort to escape what he believed to be the bitter truth: that he was unlovable, that not even his own parents cared about him enough to explain what was happening, to offer solace, or to say goodbye. All his life he panicked at the slightest sniffle or cough. He sought affection wherever he could find it. Had someone told him a different story his entire life might have followed a different arc:

“The way he explained it to me, he never fully emerged from the depths of confusion, fear, and sorrow he felt as a child. Until he told me about it, no one knew what it was like for him to have been in and out of recovery, in and out of therapy, and on and off medication all his life because of what happened to him in the hospital when he was just five-years old, and I was only three. I was too young to have understood it then, too young to have helped. 

And now that I know, it’s too late.

As a physician, I know now that rheumatic fever had damaged a valve in my brother’s heart. The doctors couldn’t do much for him because penicillin was little more than a glimmer on the pharmaceutical horizon back then. His best hope for survival was to rest his heart, and pray for it to heal.

That night my brother taught me something that, as a physician, I should have known. He taught me how mindful you must be when you care for children who are sick. You might not discover until too late that something you said or did, or that something you failed to say or do, had a devastating impact on your young patient. The bitter aftermath of your life saving efforts might stalk a child through life: fear, dread, despair.

They didn’t cover that in medical school. They taught us how healthy children grow and develop. They lectured us about the importance of vaccination, proper hygiene, and adequate nutrition. They taught us to diagnose and treat every kind of illness, to manage every type of trauma, and to identify the signs of neglect and abuse in children.

But they left something out.

They didn’t teach us how to talk to children. My brother taught me that. In the time it took for the sun to set that evening, he spelled out the most important lesson of all: when you care for children who are sick, you need to anticipate their unspoken fears, to explain what is happening to them and what they can expect. And they need to know how long it can take to heal.”
My brother carried his untold story with him his entire life. Had I known it sooner we could have started the necessary revisions years earlier. I could have explained how rheumatic fever had damaged his heart because there was so little that could be done to prevent it back then. I’d have explained why he had to rest his heart when he came home, how painful it was for our parents to watch him suffer, and how scared they were he might still die. He would have grown up understanding how much they loved him: they loved him enough to follow his doctor’s merciless orders.

His entire life might have unfolded differently, if only someone had known his story and shown him the healing path.

“There is no greater agony
than bearing an untold story inside you.”
~Maya Angelou~


Monday, July 4, 2016

storytelling~the healing path

This is a true story:

I don’t remember getting sick. I don’t recall complaining about a sore throat or swollen glands, but I do remember the day my mother called the doctor. She told him I’d kept her up all night long. She couldn’t get me to eat or drink—not popsicles, not homemade chicken noodle soup, not the honey and lemon concoction she believed could cure anything, even after she spiked it with a good stiff shot of whiskey.

Still, she didn’t start to worry until the fever set in. Even then, she waited to call him until the rash appeared and the sore throat I no longer remember morphed into a case of rheumatic fever.

“Take her to the emergency room,” the doctor said. “I’ll meet you there.”

With that, my parents bundled me off to the hospital on a cold, blustery day in March. My father's attention was riveted to the road while my mother gazed out the window as if wondering what else could go wrong.

She soon found out. A few days later I learned that my brother, Peter, had also taken ill and that he was somewhere in the same hospital with the same symptoms at the same time, down the hall or around the corner, perhaps. I never saw him there, so I assumed everything was the same for him, that he was bedridden in a barren ward just like mine with walls the color of ash, the only adornment a lone crucifix above the door.

Because I had no reason to believe otherwise, I expected to share the back seat of the car with him on the way home when the ordeal ended for me. But the seat next to me was empty when we pulled away from the hospital. I didn’t understand why we left him behind that day. No one explained it to me, and I was too young to ask. (To be continued…)
So begins a narrative that has played out in my family for over sixty years. It's the story of a shared childhood illness that eventually propelled one of us into the lifelong study of medicine and the other into a lifelong quest for healing.

Unless you know the whole story you won't understand why it took fifty years for Peter to heal. Why he was in and out of therapy, on and off medication, and in and out of recovery his entire life because of what happened to him in the hospital when he was just five years old, and I was only three.

His own doctors didn't know about it. The therapists who treated his depression, anxiety, and addiction over the years didn't ask. And because none of them knew the whole story, nothing they tried helped. He didn't begin to heal until he shared his story in a safe, supportive community where he was able to re-imagine the first chapter of his childhood and how it had hard-wired him for life. Finally, he understood the origins of the confusion, fear and despair that had followed him into adulthood like a gaggle of ugly ducklings. He finally found his wings. 
Welcome to "storytelling~the healing path", an exploration of the importance of storytelling in the practice of medicine, a field referred to as "narrative medicine."

Storytelling is an important skill for both healthcare providers and patients alike. Why? Because patient outcomes are improved when the provider understands the patient's illness in the context of his or her experience, culture, and expectations.

Satisfaction improves when the patient feels he has been heard. And, listen up all you health system CEOs and CFOs: in the long run, it saves time and money. More about that later…

Narrative medicine embraces several writing practices.

One encourages health care providers--doctors and nurses, therapists and aides--to tell their own stories, to explore their personal journeys—the motivation and inspiration, the obstacles and misgivings, the victories and defeats—that inspired them to enter a profession that can be both challenging and rewarding, discouraging and inspiring, exhausting and energizing, depending on the day of the week. Perhaps his father and grandfather before him were physicians and to aspire to anything less would have meant outright rejection by his family. Perhaps she navigated a life-threatening childhood illness, herself, so she knows what it’s like.

Another practice enables providers to share the stories that unfold for them among the patients they care for. Which patients touched them most deeply, and why? What scares them the most? Where do they find the courage, dedication and solace that make it possible to go on day after day, year after year?

Another perspective involves the most basic skill in medical care—obtaining a thorough history of the patient’s illness. Not just the facts (What are your symptoms? When did they start? What have you taken for them?), but the patient’s feelings and thoughts about what it means to be sick. How it affects the people around them, and how they feel about that.

The final path is therapeutic. It requires the caretaker to become a storyteller, to re-imagine the patient’s recovery in metaphorical terms, to tell the patient a story that suggests healing is possible because someone else has already experienced it.
If you are a health care provider, a patient or simply an interested reader thank you for following me here. If you have a story to tell…and we all do…I would love to hear it.

“The degree to which you can tell your story
is the degree to which you can heal.”
~Stasi Eldredge~ 

Here are links to my literary blog, "begin...begin again":
and to my travel blog, "cherished illusions":