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.

www.1stproviderschoice.com

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 the patient 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 has been proven to save time and money.

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 his 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~

jan

here is something you should know

If you are a health care provider...or a patient...there is something you should know. Even the best among us sometimes misses the diagnosis. 

This week, I'm having dinner with a woman whose breast cancer I missed when I was her physician, twenty-some years ago. She'd come to me saying something didn't feel right to her, but I didn't find anything unusual when I examined her. No lump. No tenderness. No redness or swelling. No enlarged lymph nodes. I recommended keeping a close eye on things to see if anything changed. You see, her insurance wouldn't have covered a mammogram just because "something didn't feel right" to her, so I didn't order one. Sure enough, a couple of months later the lump appeared. All that time lost! I watched as she underwent surgery and radiation. I watched as she lost her hair to chemo. I felt guilty, ashamed, angry. There were no words for the apology I felt I owed her. No excuse for the system that failed her. Thankfully, she came through it cancer free, but still...

"First, do no harm."

~Hippocrates~

I never had a chance to apologize to another patient of mine who died of colon cancer after she presented with a small amount of rectal bleeding. It turned out her cancer was just beyond the reach of the flexible scope I had to use to evaluate her because her health insurance wouldn't cover a colonoscopy for patients like her who were at low risk.

Again, there are no words for what I felt.

"Wherever the art of medicine

is loved,

there is also love of humanity."

~Hippocrates~

Today my BFF called to tell me how her appointment went last week when she saw her orthopedist for a problem with low back, lower abdominal, and LLE pain that have plagued her for months. She has been under the care of her family physician, a rehab. specialist, a pain management specialist, and an orthopedist for for over a year to no avail. Last week I listened to her describe her symptoms again. We went over her history, revisited her X-rays and scans, and discussed the treatment plan that  included chronic opiate use and eight months of physical therapy that didn't help at all. I told her they were missing something. She needed a new set of eyes, as we say, to look at things from a fresh perspective. 

Yesterday her pain became so intense, she went to the Emergency Room. Sure enough, they saw something near her hip on the X-ray they took. A CT scan of the area demonstrated the culprit...a fracture of the pubic ramus that she has been bearing weight on for almost a year! 

A missed diagnosis can be a terrible thing. My cautionary note to providers and patients alike is this:

• Listen to your intuition. 
• Never say never. 
• Fight back when the (health insurance) system is fighting you.
• Never give up.
• Look at the world through new eyes every day.

"Medicines cure diseases,

but only doctors

can cure patients."

~Carl Jung~

jan

the elusive diagnosis

This week I heard two stories concerning protracted illnesses that went undiagnosed for months despite exhaustive work-ups by competent physicians.

One fell into the category of dysautomonia, a malfunction of the autonomic nervous system that affects the function of the cardiovascular, pulmonary, digestive, urinary, and adrenal systems. It hit a friend of mine who is a physician, herself, with such fatigue and weakness, gastrointestinal distress and weight loss, she couldn't work. The symptoms were bad enough, but the way she described it, not knowing what was wrong affected her even more. She fluctuated between frustration and fear. Between helplessness and hopelessness. Between anger and disbelief. She searched for any clue, anything that might have been missed, any glimmer of hope for a diagnosis. When she came across the condition known as "dysautomonia", she knew she'd nailed it...except that she never did discover the cause of it, and there was no cure. She learned that the condition sometimes runs its course over time for reasons no one understands. It took over a year for her.

Dysautomonia
~en.wikipedia.org~

The other case involved a healthy young man I know who suffered for months with fatigue, joint pain, headaches, and weakness. A complete work-up failed to make a diagnosis, so his doctor attributed his symptoms to some kind of flu-like illness, aggravated by the eighty hour weeks he was working. He cut back a bit, but that didn't help. Then, his blood pressure sky-rocketed. It affected his vision. Clearly, things were getting worse. He missed work. He started to worry about his job and his family. But what really scared him was the fact that his father had had hypertension and died of a ruptured aneurysm at just about his age. He went to another specialist where blood tests revealed a rare tick-borne illness (Erlichosis) that, after 6 weeks of treatment with IV antibiotics, still left him with residual pain and fatigue.

Lone Star Tick
~webmd.com~

When the best care available fails to produce a diagnosis and treatment plan, patients feel justifiably confused. Discouraged. Angry. But that's not what concerns them most. The hardest part is uncertainty and fear. What If I lose my job? How will I support my family? What if I never get better? What if I die?

This is a compelling reminder of the emotional impact of illness on the patient's story. Illness is more than a collection of symptoms, more than fever, pain, weight loss, swelling, or weakness. It penetrates every aspect of a person's life.

Rita Charon, MD, in her book "Narrative Medicine-Honoring the Stories of Illness", writes of the patient:

"...his emotional pain is intimately tied

 to his physical situation. It would be disruptive of his integrity as a self-with-a-body to pull apart those two aspects of his suffering, apportioning the discouragement and depression to the social worker and keeping the chest pain and shortness of breath for myself."

~excerpt from Chapter 9:

"Bearing Witness"~

You won't find "fear," "anger," "grief," or "despair" anywhere in the electronic medical record as signs or symptoms of dysautomonia or Erlichosis. Nevertheless, they are major contributors to the patient's presentation, clinical course, and prognosis. They are part of the patient's search for meaning, and his perspective on the self. In order to treat the whole person--body, mind, and spirit--we need to know what he is thinking and feeling. In order for him to heal, we need to know his whole story.

"It is more important to know

what sort of person has a disease

than to know

what sort of disease a person has."

~Hippocrates~

jan