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

variations on a theme

Let’s say you have three patients who are battling cancer.

One is devastated by the diagnosis. She is overwhelmed by fear and dread. Convinced her situation is hopeless, she resists starting chemo. She just wants to die. Her doctor suggests an anti-depressant.

"Once you choose hope,

anything is possible."

~Christopher Reeve~~

One is a man of deep faith. He is convinced that God has the power to cure him even though his prognosis is unfavorable. He devotes himself to prayer and sacrifice because he believes that will earn him God’s mercy. Even when his cancer spreads, he clings to his faith. It gives him hope and a sense of optimism right up until he is forced to surrender to the disease. His doctor tries to be respectful of his faith, but he can’t shake off his own doubts about it.

"Cancer didn't bring me

to my knees.

It brought me to my feet."

~Michael Douglas~

The other patient is f***ing pissed off about it. She is not about to lose this battle. After all, she has a husband and children at home. It isn’t fair to them. She agrees to an aggressive plan of treatment that includes surgery, radiation and chemotherapy. She begins a program of exercise, diet, and meditation, and she adopts a practice of loving self-care. She is determined to beat this thing. Her doctor encourages her even though he doesn't indulge in self-care, himself.

"You never know how strong you are

until being strong is

the only choice you have."

~Bob Marley~

Three different patients with the same disease, and three different stories. What difference does it make? There is an abundance of literature concerning the factors that affect a patient’s quality of life during treatment for cancer and how this correlates with his likelihood of recovery. Some factors are immutable: age, gender, and family history, for example. Others are modifiable: emotional and attitudinal factors, dietary factors, level of fitness, faith, and social support.

Given their stories, the physician will approach each of these patients differently, even though each of them has the same fundamental needs: education, encouragement, and support.

When is the last time you had to convince a patient to enter treatment? When is the last time you offered to pray for--or with--a patient?

When is the last time you practiced self-care?

"Self-care is a 

divine responsibility."

~Danielle La Porte~

                                                                                                                                                  jan





pretty much foolproof advice

This is just a quick post because theoretically I'm off the grid this week, on retreat at Kripalu Center for Yoga and Health in Stockbridge, Massachusetts (where the use of devices is frowned upon). But, this is important. This is for aspiring writers and storytellers everywhere. 

So, it happened to me again. I pulled a random book off the shelf at the Kripalu bookstore where I was perusing books on meditation and mindfulness, when this book jumped out at me:

The author, Matthew Dicks, is a bestselling novelist, thirty-six time Moth StorySLAM champion, and five-time GrandSLAM champion...proof he knows how to tell a good story. In this book, he shares what he has learned about successful storytelling from his experience with The Moth, nuggets like how your story must begin, how to capture and hold your listener's/reader's attention, how and why to make people cry, and how to balance that with humor. How to amass ideas for stories, what to include, and what to cut.

If I had to recommend one book about storytelling, this would be it. I should know. At last count, I own, and have mostly read, over 150 books covering every aspect of writing from novels to short stories, from memoir to creative non-fiction to poetry. This is the ONE.

"Great stories happen to

those who can tell them."

~Ira Glass~

Happy storytelling!

jan

how to write something true

Windowpane...compliments of Jack Frost in collaboration with Mother Nature

If you plan to write or paint or sing or dance this year...this new year...I hope you have friends who celebrated New Year's Eve by making a list of resolutions with enthusiasm, energy, and optimism, because this is what it takes to make creative dreams like yours come true. I hope your friends pursue their goals with devotion, persistence, and joy so that you can learn from them. 

I have a couple of friends who are like this. Artistic, imaginative, dedicated souls who inspire and encourage me. This year for Christmas, they sent me a poster titled, "How to Write Something True"...step by step instructions to make my writing dreams come true, taking it one word at a time. The same advice applies to you. Simply start by taking one stroke with your brush, by taking the first step of your dance, by singing one note of your melody at a time.

If you have a story to tell, especially if you are a doctor or a nurse, a therapist in any field, a medic, or an orderly, you have something true to say. If you are a patient or caretaker, you know how hard the truth can be. If you resolve to write (or draw or sing or dance) about it this year...this new year...you may be surprised to see what happens next. Affirmation. Release. Healing. So that you can truly live.

"All you have to do is

write one true sentence.

Write the truest sentence that you know."

~Ernest Hemingway~

jan

Christmas eve

Imagine that tonight is Christmas eve. 

Outside, the sun is setting under a sky that could pass for cotton candy.The air is frigid but still. The street is busy with people hurrying home to begin celebrating the holiday. You, yourself, are looking forward to getting home to a crackling fire on the hearth and a traditional Christmas eve meal. The kids are home from college. Their gifts are wrapped and piled under the tree. You breathe a sigh of relief and gratitude.

"I will honor Christmas in my heart

and try to keep it all the year."

~Charles Dickens~

It was a busy day. Among the patients you admitted through the emergency room were a child with asthma complicated by fever and pneumonia, an elderly gentleman who fractured his hip when he slipped on the ice outside his garage, an OD, and an out-of-state trucker with chest pain and an abnormal EKG. Orders have been written, tests scheduled, and rounds finished. Your patients are settled for the night. Your job for the day is done. It’s time to go home.

Except that part of you never goes home.

You can't forget the expression on the child’s face when he learned he would be spending Christmas in the hospital. He’d asked for a blue bicycle and he couldn’t stop crying because he wouldn’t be there to get it…and he wasn’t well enough to ride it, anyway.

You recall discussing her husband’s injury with the elderly man’s wife. She would be alone for Christmas now, and for weeks to follow. She couldn’t imagine how she would manage by herself.

The OD was not accidental. You are reminded of the most recent studies debunking the long-perpetuated myth that suicide rates peak around the holidays. In fact, suicides reach a statistical nadir in December. Still, opioid contamination keeps no schedule and leaves no clues. It will be a long vigil for this victim’s family overnight.

You learn that the trucker’s family is stuck at Chicago’s O’Hare International Airport because of blizzard conditions. They wonder if he will survive this latest heart attack. Will they get there in time?

It’s Christmas eve. You get to go home. Your patients don’t.

"When you're sick, 

it's nice to know there are people

who await your recovery

as they might a holiday."

~Anton Chekhov~

This is a bi-polar time of the year, a time that highlights the irreconcilable discrepancies, emotional extremes, and divergent realities that prevent some people from celebrating the spirit of the holidays. There is poverty in contrast to wealth, sorrow instead of joy, cruelty as opposed to compassion, and of course, illness instead of health.

For those of us in the medical field who are taking our patients’ medical histories, exploring their symptoms, and fielding their pain when the rest of the world is celebrating joy and peace, it is a bittersweet season. Many of our patients will experience pain rather than comfort, grief instead gratitude, anger as opposed to joy, and anguish instead of peace. It won’t be merry or bright at all. They will be stuck with it…and in many ways, so will we.

"Illness is the night-side of life,

A more onerous citizenship.

Everyone who is born holds dual citizenship

in the kingdom of the well

and in the kingdom of the sick."

~Susan Sontag~

If Christmas eve with your family is happy, loving, and peaceful, I wish you a merry one.

If not, I wish you hope. Courage. Friendship. Beauty. Time. Snow if you like it…sunshine if you don’t.

Dickens could have been describing Christmas eve when he wrote in “A Tale of Two Cities":

"It was the best of times,

it was the worst of times...

it was the season of light,

it was the season of darkness,

it was the spring of hope,

it was the winter of despair."

It was Christmas eve.

jan