what the patient needs

Programs in Narrative Medicine, like the one at the College of Physicians and Surgeons of Columbia University, train health care providers (physicians, nurses, and therapists of all kinds) to recognize, absorb, interpret, and to be moved by stories of illness--the patient's chief complaint (CC), the history of the present illness (HPI), and the past medical history (PMH).



It is no longer sufficient to scroll through a bullet list of symptoms, ie. low back pain and stiffness. Check. Lower extremity weakness and numbness. Check. Calf swelling. Check.

The patient needs more from his provider than a diagnosis, and a referral or prescription. He needs to know that his provider hears him, understands him, and addresses all the ways he is suffering:
               ~physically because of the symptoms of his illness...pain, exhaustion, weakness, etc.
               ~emotionally because of anger, shame, guilt, or despair
               ~spiritually when there is no hope for recovery
               ~financially if he becomes disabled because of his illness or injury

"The good physician treats the disease:

the great physician treats

the patient who has the disease."

~William Osler~

Ten minute office visits do not suffice to expose all that must be said, nor do they permit the kind of longitudinal relationships that are so important to understanding and responding to illness. This process takes time.

"Medicine practiced without a genuine

awareness of what patients go through

may fulfill its technical goals

but it is an empty medicine,

or at least, half a medicine."

~Rita Charon~


 

The whole other issue in narrative medicine is the patient's ability to tell his story. Patient's are not born knowing the language of medicine. They don't know what the provider needs to hear in order to understand their illness. Fatigue is not the same as weakness. Tingling means something different from numbness. Stabbing pain means something different from aching pain.

"If storytelling is important,

then your narrative ability to put into words,

or to use what someone else

has put into words effectively,

is important, too."

~Howard Gardner~

 

Patients may be ashamed to admit to unhealthy behaviors that put their health at risk. They may be reluctant to share the emotional impact of their illness on their marriage, children, and co-workers. They sometimes lie in order to deny or minimize the seriousness of the condition, saying the crushing pain that accompanied their heart attack felt like "a little indigestion," or the fungating mass in their breast just appeared "a week or so ago." An attempt to assuage their worst fears.

Medical history taking is a collaborative effort. For both the storyteller (the patient) and the listener (the provider), it requires a shared language, common purpose, and mutual effort. It is never too soon to begin...to learn...to change.

"People hear facts,
but they feel stories."
~Brent Dykes~

jan



a recipe for disaster

 

Bye-bye, summer.

 

 

I retired after thirty years in Family Medicine out of fear.

 

I didn’t leave because of the long hours, or the fact that I’d been running hopelessly behind schedule all day, every day for three decades. I didn’t leave to take an easier position or to make more money. I didn’t ask to be excused because of fatigue or forgetfulness or ill health.

 

What scared me was the inevitability that I would miss a critical diagnosis, and because of it, I would subject the patient to unnecessary and inappropriate testing and treatments...all because I didn't get the patient's full history. I didn't know the whole story. Who had time to listen? Who had time to search for physical clues to the diagnosis?

 

"I think of my patients as

body AND mind;

the more I understand about both of these,

the easier it is for me to help."

~Dr. McKenzie Mescon~

 

This fear reflected, in part, the trend toward productivity requirements that link complexity with compensation. Briefly...a doctor generates more money by seeing more complicated patients in less time and by utilizing fewer diagnostic resources in their care. This is a sure recipe for disaster.

 

Let's say a patient presents with a sore throat and fever. His health care provider checks his throat and ears, and feels around for swollen submandibular lymph nodes. A throat swab is negative for Strep. But because he's running behind schedule, and only has ten minutes to see the patient in the first place, the provider fails to palpate the enlarged supraclavicular node that would have tipped him off to the real diagnosis...the lymphoma that was simmering out of sight. The lymphoma that was causing the patient's night sweats, fatigue and weight loss that no one asked about. It has happened. 

 

"The important thing is

not to stop questioning.

Curiosity has its own reason

for existing."

~Albert Einstein~

 

Last week I told you about the mysterious case of frostbite that was only diagnosed after the provider went back and reviewed the whole story with the patient. Some time ago I related the history of a patient who claimed her left orbital blowout fracture was the result of a fall causing her to strike the corner of her TV...when in fact, it was the result of a blow from her boyfriend's fist that required me to secure a PFA and to find safe shelter for her. That took time, but it may have saved her life.

 

Isn't that what physician productivity is really all about? Time constraints, reimbursement issues, and productivity aside...we are here to deliver high quality, compassionate, and complete health care to our patients...not to play "stop the clock" with them.

jan

 

 

 

 

 

 

 

 





how to save time and money

 

"Why, certainly. Help yourself..."

 

This summer, I enjoyed a brief writing hiatus that included a week away at Kripalu Center for Yoga & Health for the third annual conference on Narrative Medicine. Of course, I came back ready to share what I learned about compassionate listening, cognitive coupling and dissonance, and the interpersonal neurobiology of storytelling...and how all of that relates to patient care and healing. No small task.

 

But it wasn't until I got home and was enjoying a cup of coffee with an old friend, a nurse practitioner, that the point was driven home. She presented me with this photo of a patient's foot and dared me to make the diagnosis:

 



 

This was the patient's history: She'd been seen in the emergency room several days earlier with an injury to the foot. She said she'd twisted it. X-rays were negative for fracture and she was discharged with instructions to elevate the foot and apply ice for pain and swelling. A few days later she saw my friend for follow-up because her foot had gotten so much worse. This is a picture of the foot at follow-up.

 

What do you think was going on?

 

"There is need of a method

for finding out the truth."

~Descartes~

 

I ran through a quick differential in my mind. Was it a crush injury? No. Necrotizing fasciitis from "flesh-eating bacteria"? No. Disseminated intravascular coagulation? No.

 

My friend, too, had been puzzled because the history did not fit the findings. So she'd gone back to the patient and asked again what had happened. If she hadn't taken the time and made the effort to uncover the whole story, she never would have made the correct diagnosis. The patient would have undergone expensive and unnecessary testing, and misguided attempts at treatment.

 

This is a case of frostbite.

 

To ice her foot, the patient had purchased an icing boot. It numbed her foot to the point that she left it on for 48 hours and didn't realize what was happening until she took it off. With this bit of additional history, the diagnosis presented itself. The patient underwent extensive treatment and rehab, and eventually recovered.

 

 "Listening constitutes the very

heart and soul of the

clinical encounter."

~Mary T. Shannon~

 

This is a perfect example of the importance of narrative in medicine. Taking the time to hear the patient's whole story promotes accurate, efficient, and effective evaluation and treatment. And, for all the CEOs and CFOs out there...that saves time and money.

jan

 

  

 

the untold story

 

If you follow the news, you may feel overwhelmed right now. I know I do. My heart aches for the victims of the recent school shootings and their families and friends. It’s an outrage to witness the cruel treatment of immigrant families at the most vulnerable time in their lives. I worry about climate change and environmental issues given the perversion of the EPA. And I cringe to think how close to nuclear war we may have come because of the impulsivity of a few corrupt and evil men. It’s a lot to think about. I’m scared. I’m angry. I’m sad. But mostly, I feel helpless. I think we all do.

“The good news is that

Jesus is coming back.

The bad news is that

He’s really pissed off.

~Bob Hope~

And now there’s this to think about: suicide. This past week we lost two renowned, respected, and seemingly successful souls to it. Even though they lived in the public spotlight, no one saw it coming. Even close family and friends were blind-sided by it so no one intervened to prevent it.

Now we will never hear their untold stories. We will never know what demons stalked them, what internal battles raged, what was missing in their lives…how they ended up on this path and followed it to the end.

“At any moment you have the power

to say this is not

how the story is going to end.”

~Christine Mason Miller~

The thing about suicide is that, unlike some of the other political, environmental, and humanitarian challenges we face, we can do something about it. Timely intervention can save lives. But first, you need to understand who is at risk. You need to know the warning signs that suggest someone is suicidal, and then be courageous enough to act. If you are worried about a potential suicide, say something. It has been shown over and over again that talking about suicide to a person who may be contemplating it does not trigger the suicide.

The warning signs of suicide are indicators that a person may be in acute danger and may urgently need help.

·                     Talking about wanting to die or to kill oneself even in a casual or joking manner;

·                     Looking for a way to kill oneself even if it’s just an online search

·                     Talking about feeling hopeless or having no purpose; 
·                     Talking about feeling trapped or being in unbearable pain;

·                     Talking about being a burden to others;

·                     Increasing the use of alcohol or drugs; 
·                     Acting anxious, agitated, or reckless;
·                     Engaging in reckless or dangerous behaviors or activities;

·                     Sleeping too little or too much;

·                     Withdrawing or feeling isolated;

·                     Showing rage or talking about seeking revenge; and

·                     Displaying extreme mood swings.

(This list of Warning Signs for Suicide was developed by an expert review and consensus process that included SAVE’s Executive Director and was informed by a review of relevant research and literature.  Additional information about the warning signs can be found in the following published article: Rudd, M. D., Berman, A. L., Joiner, T. E., Jr., Nock, M. K., Silverman, M. M., Mandrusiak, M., et al. (2006). Warning signs for suicide: Theory, research, and clinical applications. Suicide and Life-Threatening Behavior, 36(3), 255-262.)

In some cases, an individual who has appeared to be depressed or agitated may suddenly seem unusually calm and relaxed. This may mean they have settled upon and are at peace with their decision to carry out their plan…not that they have decided against it.

You can learn more at https://save.org/about-suicide/warning-signs-risk-factors-protective-factors/

“If you want a happy ending,

that depends, of course,

on where you stop your story.”

~Orson Welles~

 jan

 

 

 

 

 

 

stuck? try this

Are you keeping an untold story in lock down? A painful chapter stored somewhere in your heart under lock and key? A tender memory moldering out of sight?

Why?

Have the voices been messing with you? The voices that insist you have nothing important to say? That you have no talent for this kind of thing? That no one wants to hear what you have to say anyway?

Perhaps your story is too painful to revisit. Too achingly sad to put into words. Too confusing to make sense of.

“You are so brave and quiet

I forget you are suffering.”

~Ernest Hemingway~

If this resonates with you, you MUST begin writing. Do it for the rest of us. Start with a grocery list, write a letter, or run out and get yourself a journal that strikes you as welcoming and forgiving. Go now! We’ll wait.

As Maya Angelou reminds us:

“There is no greater agony

than bearing an untold story inside you.”

~Maya Angelou~

Can’t do it? Try this. Ask yourself these three questions:

1.    What do I know?

Perhaps you lost a child. Maybe it happened because of a miscarriage no one saw coming. Perhaps someone convinced you to have an abortion when you were too young to understand what was happening…and now you can’t forgive yourself. Maybe you spent an inestimable number of sleepless nights at your child’s bedside fighting for his survival to no avail. You know everything there is to know about suffering.

2.   Who else needs to know it?

If you survived, someone else needs to know how you managed to pull it off. Someone, somewhere needs to know that survival is possible. It might be the father who suffers a disabling injury. Or the parent of a child with special needs. Or the woman who is hearing the word “cancer” for the first time.

The story of your journey maybe a wellspring of hope for others. Your strength may be the only thing that keeps them standing under the weight of their own burden. The expression of your anguish gives them permission to admit theirs.

3.    How will I tell them?

“Write hard and clear

about what hurts.”

~Ernest Hemingway~

One painful word at a time. One affirmation after another. Honestly. Openly. Courageously.

Still can’t do it? Try writing a poem or a letter. Perhaps instead you should run out for some new paints and a fresh white canvas. Or raise your voice in song. Or put on some music and dance.

There is more than one way to tell a story.

jan

 

 

the "social autopsy"

 

 

Last week I listened to a piece on NPR (http://www.wbur.org/hereandnow/2018/05/11/opioid-crisis-west-virginia) about the extraordinary number of deaths due to opioid overdose in West Virginia…the highest rate in the country. West Virginia Commissioner of Health, Dr. Rahul Gupta, presented the concept of the “social autopsy” whereby he examined the histories of all 887 persons who died of drug overdoses in the state in 2016. This was an effort to identify the factors that put people at risk. Theoretically, this information could help identify a population that could be targeted with preventative strategies and public health policies in order to reduce the death rate due to opioid addiction.

“Addiction will end your life.
Recovery will change your story.”
~www.identifyproject.org~

You may have heard the term “social autopsy” used in a different context. The term has been used to describe strategies for adult intervention with school children who are socially challenged and make significant social errors, for example children with autism. (https://www.autismclassroomresources.com/social-autopsy/)

It is also the title of a website that was launched in 2016 to identify and monitor cyberbullies and trolls on the internet (http://nymag.com/selectall/2016/04/how-social-autopsy-fell-for-gamergate-trutherism.html).

But this is different. Dr. Gupta’s social autopsies were actual postmortem investigations. They were designed to look beyond the medical aspects of opioid deaths, to examine more than just the blood levels, types of drugs, and the presence of contaminants that were responsible for the deaths. He looked at the victims and their demographics (age, gender, race, education, income, religion, and marital status). He explored the effect of proximity to and the availability of effective treatment facilities. He checked out the relationship of opioid deaths to health insurance and Medicaid, and the incidence of treatment refusals. He took into consideration the risk of injury in the workplace and the prescribing habits of physicians who treated patients with these injuries. He considered the influence of family structure, a history of previous incarceration, and evidence of other addictive tendencies (alcohol, gambling, sex). His goal was to create a profile of characteristics associated with death due to opioid addiction so as to establish strategies for effective public health planning and preventative interventions.

“You no longer have a secret.
You have a story.”
~unknown~

Dr. Gupta came up with 887 different stories, each one complete with a full cast of characters, detailed backstory, setting, and story arc. The problem is they all ended in the death of the main character. Had we known their stories earlier, perhaps some of these deaths could have been prevented.

Hopefully, the next chapter will end on a more positive note.

“At any given moment

you have the power to say:

this is not how the story is going to end.”

~Christine Mason Miller~

jan

 



when was your big moment?

 

Author Natalie Goldberg will be one of the presenters at the 3^rd Annual Conference on Narrative Medicine I’ll be attending at Kripalu Center for Yoga and Health in July. So... I’m re-reading all the books of hers I’ve collected over the years. Writing Down the Bones. Freeing the Writer Within. An Old Friend from Far Away. And, last night, The True Secret of Writing.

In it, she was talking about a specific writing prompt:

“Can you tell me about a moment that was big for you…

an instant when you saw things differently from then on?

Not a sensational moment—

you won ten-thousand dollars in the lottery,

 you were lost in the woods alone with no food—

but a quiet moment when your whole awareness shifted?”

~Natalie Goldberg~

Oh, I hope she uses this prompt in one of our workshops this summer because, oh, my…do I have a story for her.

True story:

When I was looking at colleges many years ago, I had insanely strict criteria about what I wanted in a school. It had to be in New England (I was a devoted skier), and the campus had to be beautiful. Period. That’s all.

In the end, I wound up at UVM (because it met all of my criteria…) where I majored in medical technology…because it was the only department other than math and chemistry that admitted many out-of-staters, and math and chemistry were not even thinkable for me. I figured, as a med tech, at least I would graduate with a degree in a field where I could expect to find a paying job.

Then somewhere along the way, it dawned on me that maybe I should think about medical school. Blood and urine and saliva samples were intriguing enough, but I was curious about the patients who submitted them…about the diseases they suffered, how their illnesses affected them, what was being done to treat them. But it was a lofty goal, and I didn’t believe I was brave enough, or smart enough, or strong enough to pursue that career path.

“We have to look at our own inertia,

insecurities, self-hate, fear that, in truth,

we have nothing valuable to say.

When Your writing blooms

out of the back of this garbage compost,

it is.”

~Natalie Goldberg~

I expected to settle for a career in research…

…until the night everything changed for me. On a blind date. To the annual medical school banquet and faculty roast. With a med student who apparently met all the requirements that qualified him to become a fine physician.

So, I went into this blind date in a state of paralyzing awe at this brilliant, handsome young man. How had I ended up on a date with him? I was shy back then. And, naïve. The dark side of medical humor (and isn’t most medical humor on the dark side?) did not tickle my funny bone. I felt like a total misfit…and that only served to reinforce my insecurity and reluctance to reach for med school…

…until we went back to Mr. Future Doctor’s apartment. I kid you not when I say garbage was piled in the middle of the kitchen floor. And I don’t mean the trash can was overflowing. It was just piled there…uneaten food from God knows when, cans and bottles, oozy things. And it covered the counters and table, too. Oh…and, of course, there was drinking and smoking and weed.

Which brings me to “The Moment”. The exact moment when I looked at this man and thought…no, I knew in my soul…if he could do it, I could do it!

Sometimes you will never know the value of a moment

until it becomes a memory.”

~from Illionis Home

If it hadn’t been for that serendipitous date and “The Moment” my awareness shifted I would probably still be cross matching blood and culturing urine in a hospital lab somewhere…wondering who those patients really were. I wouldn't have a lifetime in medical practice to look back on, and I wouldn't have any of those stories to tell.

“If you miss the moment,

you miss your life.”

~David Daido Loori~

jan