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:

1. THE PAST MEDICAL HISTORY (PMH):

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.

2. THE FAMILY HISTORY (FH):

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.

3. THE SOCIAL HISTORY (SH):  

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~

 jan

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.

www.coherecommunity.com

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~ 

jan

Here are links to my literary blog, "begin...begin again":

 www.abeginneragain.blogspot.com 

and to my travel blog, "cherished illusions":

www.illusionsaway.blogspot.com