Monday, May 21, 2018

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

 



Sunday, May 6, 2018

when was your big moment?

 

Author Natalie Goldberg will be one of the presenters at the 3rd 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, na├»ve. 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


 

 


Sunday, April 29, 2018

getting the whole story

 
 
A path through the woods at Kripalu.
 
This summer I'll be attending the third annual conference on Narrative Medicine at Kripalu Center for Yoga and Health. For the past two years, this is where I have found my inspiration as a physician and a writer.
 
All week long we will listen to leaders in the field describe the healing power of storytelling and how to practice it. Physicians from Harvard, Yale, Columbia and Stanford, published authors, health care providers, and holistic and native American healers will share their amazing stories with us.
 
So, why hasn’t narrative medicine taken off? Why aren’t physicians and patients everywhere engaged in storytelling as part of the therapeutic process?
 
“I’m not telling you it’s going to be easy.
I’m telling you it’s going to be worth it.”
~Art Williams~
 
To put it bluntly, if it doesn’t make money the CEOs and CFOs who head up competing hospital health systems aren’t interested. Administrators who drive health care systems forward are less concerned with, and less knowledgeable about, hands-on patient care than they are about productivity, profit, and power.
 
It’s no wonder patient satisfaction is at an all-time low, and physician burnout is at an all-time high.
 
“Burnout occurs when passionate, committed people
Become deeply disillusioned with a job or career from which
They previously derived much of their identity and meaning.
It comes as the things that inspire passion and enthusiasm
are stripped away and tedious or unpleasant
things crowd in.”
~mathewgates.co~
 
What would it take to reverse this trend?
 
Numbers.
 
Storytellers would have to prove that the practice of narrative medicine improves profits, shortens hospital stays, reduces the number of readmissions, or otherwise generates income and saves money. Forget patient satisfaction and physician empowerment.
 
“Stories are not material to be analyzed;
they are relationships to be entered.”
~AW Frank~
 
Or, maybe something like this will have to happen:
 
Let’s say the CEO of your hospital (let's call him Tom) experiences an episode of severe chest pain. He is impressed by the speed, efficiency and expertise with which he is evaluated in the ER, rushed to the cath. lab, stented, and admitted to the CCU. Two days later he is discharged.
 
He congratulates himself how well the system works. This is what drives him--efficiency, accuracy, and speed.
 
However, a couple of days following discharge, he experiences a syncopal episode during a board meeting. Again, he is rushed to the ER where his physical examination is unrevealing. His EKG is unchanged, and his chest X-ray and a stat CT of his brain are normal. He is admitted for observation. In the middle of the night, though, he suffers a cardiac arrest and dies.
 
~corticare.com~
 
 
Why? Because no one thought to ask him about heroin addiction…and he wasn’t about to bring it up. It wasn’t one of the bullets on the EMR for patients admitted with chest pain. Smoking? Yes. Exercise? Yes. Heroin? No.
 
If the possibility of heroin abuse crossed his cardiologist’s mind, he didn’t ask about it. Had he, however, asked about stress and how Tom coped with it, he might have uncovered the real story.
 
“Writing and humanities studies
produce better physicians…
because doctors learn to coax hidden
information from the patients’ complaints.”
~Rita Charon~
 
Maybe one of his investments bottomed out. Maybe he found out his wife was having an affair. It was all too much for him even though he managed to project a veneer of confidence, authority and success. His addiction was the hidden demon that ultimately took his life.
 
We may be skilled at zeroing in on the diagnosis and treating the patient. We know how to increase productivity and reduce costs. We pride ourselves on modern medical technology. But until we get the whole story, we can’t treat the whole person. Unless we know the whole truth, the patient won’t get well.
jan

 




Tuesday, April 24, 2018

the not-so-perfect day for a walk

 
 
 
 
Yesterday was a great day for a walk…as Winnie the Pooh would have put it, a perfect day to be quiet by a little stream and listen.
 
“Everybody should be quiet
by a little stream and listen.”
~Winnie the Pooh~
 
So, that’s what I did. My route took me back and forth across a lovely brook four times. The sky was clear blue, the sun was warm, and the air was still. The silence and solitude gave me time to think. It was a perfect day for me…but not for everyone.
 
In contrast to the comfort, peace, and gratitude I felt for my own good fortune…my thoughts were drawn to the news. Not just to the underlying current of poverty, violence, and sorrow that stalks mankind in general…but specifically to the young boy who suffocated in his car last week despite his pleas for help after calling 911…after texting his mother to say that, if he died there, he wanted her to know he loved her. My thoughts turned the eight-year old girl found dead after a brutal rape. And to their families’ shattered hearts.
 
I couldn’t help but think about the victims of the week’s senseless shootings. About the plight of animals who were neglected and abused. About the latest damage to the only environment we know. And, as a physician, about the people I know who are sick or dying.
 
“I am constantly amazed
by man’s inhumanity to man.”
~Primo Levi~
 
Arrrgh! It is all so insanely painful to contemplate. What are we to do?
 
A couple of hours after my walk, I went to my yoga/meditation class, and you know what? I felt better after it…stronger and calmer. It reminded me that as health care providers, we come to accept the fact that we can help some of our patients, but not all of them. We can save lives some of the time, but not all the time. We have to take the bad news with the good. We have no choice.
 
Nevertheless, because we have the skill and sensitivity to offer words and to perform acts of comfort, encouragement, and solace, we have the power to bring balance to the world. Without the good we do, without the gratitude we feel, without the kindness we offer, how would we survive?
 
Caring, giving, embracing hope…and perhaps even prayer…are necessary survival skills in a world that might otherwise go down in defeat. The good that we do, where we are, with what we have strengthens us for the journey.
 
“Do what you can,
with what you have,
where you are.”
~Theodore Roosevelt~
 
jan
 

 
 
 
 
 

Sunday, April 15, 2018

a fork along the healing path

 
 
 
There is a fork in the road along the healing path in narrative medicine. One pathway invites patients to tell the stories of their illnesses. The other beckons health care providers to share their experiences as healers. The journey for both patients and providers is similar. It embraces memory, invites reflection, provides perspective, and engages support.
 
The patient’s narrative recalls his symptoms. He lists the diagnostic tests that were performed, names the medications that were prescribed, and traces his journey back to health…or not. All of which has to do with his care. But equally important is the fact that he can tell you how the diagnosis affected him emotionally and psychologically. He may have despaired to learn he had cancer. His entire world may have spun out of orbit because of a stroke or disabling injury. How will he manage if he can’t work? How will he support his family? Who will pay the bills and mow the lawn? He dreads burdening his wife and children with his care. He wishes he could die…not a healing thought at all.
 
If, on the other hand, the news is good, let’s say the lump turns out to be benign or the doctors are able to slip the stent in before the infarction occurs…the patient’s story may end on a happy note. Besides relief and gratitude, there may be some spiritual introspection. A surge in compassion and empathy. New found joy and peace. An entirely different story.
 
“Piglet noticed that even though
he had a very small heart,
it could hold a rather large amount
of gratitude.”
~AA Milne~
 
When the health care provider sets out on his narrative path, it takes him to the bedside of patients he has cared for over the years. He recalls patients with interesting and unusual presentations, baffling symptoms, and resistant conditions. He re-experiences his triumphs and his defeats. He may finally admit to the uncertainty, oversights, and errors in judgement that have haunted him over the years. He can name the patients who recovered against all odds.
 
“If you want a happy ending,
that depends, of course,
on where you stop your story.”
~Orson Welles~
 
But, just as important, he may finally acknowledge how hard it was to sustain his marriage and to be present for his children. He may have missed his son’s winning soccer goal at the state championship because he was tied up in the operating room, or he may have forgotten his wife’s birthday because of some committee meeting or other. A huge part of his story takes place outside of the hospital and office.
 
Our stories take into account more than what happened to us, when it occurred, or how it ended. They embrace how we react to life’s vagaries, how we interpret and process them, how we survive them physically, emotionally, and mentally, and who we become because of them.
 
“Telling our story does not merely
document who we are.
It helps make us who we are.”
~Rita Charon~
jan
 
 
 



Sunday, April 1, 2018

the story of the present illness





The story of my life during the years leading up to my retirement could be written in ten-minute installments, patient after patient, day after day. This is in keeping with the trend toward shorter and shorter sound bites, 280 character tweets, and snarky comebacks that have come to replace the leisurely, thoughtful exchange of ideas that human beings have always enjoyed, and/or depended upon.

It wasn’t always this way. There was a time, not many years ago, when I could scan my schedule for the day and envision every patient. I knew them that well. With a quick glance at the chart I knew who was getting ready to start chemo, who just welcomed her first grandchild into the world, whose mother had been transferred into the dementia unit. I knew because I asked about it, the patient told me the story, and I noted it in the chart.
“Wherever the art of medicine is loved,
there is also a love of humanity.”
~Hippocrates~

Nowadays, rather than dictating a note on the patient (a.k.a. narrating the patient’s story) you open an electronic medical record. This is intended to expedite the ten-minute appointment. After all, as physicians, you have productivity quotients to meet, and income to generate. Whether you recognize your patients or not.

The EMR presents you with a confusing array of bulleted items, complicated charts, and abbreviated details. You can tell what symptoms were problematic at the last visit, when they started, how often they happened and how long they lasted. You know what tests you ran and what treatment you ordered, but you might not remember the patient because nothing about his or her story distinguishes him. He looks like any other older patient with diabetes, or heart failure, or the COPD…because you missed the fact that he’s a decorated Vietnam veteran. You can’t understand why your pregnant patient is so anxious because you failed to ask about her sister…who had three miscarriages in a row. You don’t know because you didn’t record the whole story. There just isn’t enough time for that in a ten-minute slot, and there is virtually no place to enter it into the EMR.
Image result for EMR

You don’t realize that the patient’s intractable headache started when she discovered the cigarette burn on the sleeve of the sweater her ten-year old wore to school last week. You can run every test under the sun and prescribe every medication known to mankind, but unless you address the problem she is having with her child, nothing will help.
You have no way of knowing that the patient’s heartburn and indigestion have been a problem because of the pile of unpaid bills collecting on the kitchen counter. Until he has some help with them, nothing is going to help his heartburn.

Unexpected details sometimes emerge as part of the process of taking “the history of the present illness.” But unless the patient is seeing you for a straight-forward sore throat or a common rash, it often takes time we no longer have.

“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
 

 

 

Sunday, March 25, 2018

the time it takes...the trouble it saves

 
 


 Training in the practice of narrative medicine focuses on motivating and enabling health care providers to uncover the real story behind the patient’s illness…not just his symptoms, but his attitudes toward health and healing, how his illness affects his life and the lives of people around him, and his fears and hopes for the future.
 
“It can be argued that the largest
yet most neglected health care resource
worldwide is the patient.”
~Dr. Warner Slack~
 
Let’s say a woman presents with a complaint of palpitations…the sensation that her heart has been beating rapidly and/or irregularly, off and on, for a couple of weeks. It scares her because her father died suddenly following a heart attack at the age of 54. She limits her caffeine intake, exercises regularly, and is otherwise healthy. When you see her in the office, her cardiac exam is normal…her pulse is 80 and regular. Her blood pressure is normal. So, you schedule her for a stress test and a cardiac event recorder. The only thing that shows up is an occasional episode of sinus tachycardia. You have now run up several thousand dollars in bills and you still have no diagnosis.
 
Had you taken time to ask about recent stresses in her life, she might have told you about the cigarette burn she recently found on her twelve-year old’s shirt sleeve. And how poorly he’s doing in school. And how worried she is about him because if he’s smoking already, what’s next? And how hard it is as a single mother because she has to work two jobs and she can’t keep her eye on him the way she should.
 
“We know that stress is perhaps
the most underrated of all  
our heart disease risk factors.”
~Michael Miller~
 
It’s no wonder her heart is acting up. But her cardiac condition is not the problem. Stress is. And stress can be a whole lot harder to treat than a cardiac arrhythmia. You could run every test known to mankind in an effort to convince your patient that her heart is fine…but until you identify and address the real issue, she will continue to have symptoms. Her problems will only get worse.
 
Narrative medicine encourages us to take time to elicit the patient’s whole story, and to consider the context of his illness. To touch the sensitive spot. To probe the wound. Not only to make an accurate diagnosis but to explore the patient’s fears, expectations, and beliefs about his condition…anything that might delay healing.
 
Or promote it.
 
“The good physician treats the disease;
the great physician treats the patient
who has the disease.”
~William Osler~
 
jan