Sunday, July 16, 2017

where brilliance abounds

Kripalu  Center for Yoga & Health

I learned three great truths at the conference on narrative medicine at Kripalu Center last week:
            ~Storytelling is an act of raw courage.
“It takes courage to grow up
and become who you really are.”
~e. e. cummings~
~Brilliance abounds.
“That was brilliant!
~Nancy Aronie~
            ~ “The news from the mountains is good.”
“These mountains that you are carrying
you were only supposed to climb.”
~Najwa Zebian~
…that, and a little bit about the root of all suffering and how to alleviate it, how the mind has the ability to change the brain, and how listening can be a healing practice. I learned about dismantling the walls that surround issues of ethnicity and race, about poetry as a storytelling tool, and how meditation can fuel creativity. I watched skepticism morph into curiosity, curiosity lead to connection, and connection grow into trust.
If you noticed a slight jolt around noon on Friday, it was caused by the release of energy, intention and wisdom by fifty or so students of narrative medicine as we returned to our lives inspired, encouraged, and supported as storytellers, as listeners, and as healers. We learned that:
“There is no greater agony
than bearing an untold story inside you.”
~Maya Angelou~
Deepest gratitude goes out to Rita Charon, MD for sharing her work in the practice of narrative medicine, to Stephen Cope for helping us embrace our calling in life as a spiritual practice, to poet Marie Howe, to Rev. Jacqueline J. Lewis for her efforts to abolish the artificial constructs of ethnicity and race, to Lisa Nelson for introducing us to the neurobiology of listening, to Nellie Hermann on memoir, to Judith Hannan and Nancy Aronie for inspiring us to write, to Jillian Pransky for connecting us in mind, body, and spirit, and to Paul Morris for moderating our “open mic” in the tradition of The Moth.
Many thanks to Lisa Weinert and her staff for orchestrating, choreographing and conducting this conference. But most of all, thanks to everyone who dared to share their own stories with the rest of us.
“You are braver than you believe,
stronger than you seem,
and smarter than you think.”
~Christopher Robin~

Ps: Your thoughts and comments are welcome and encouraged.

Monday, June 26, 2017

genre fiction vs the clinical note

Loborsoit, Tanzania, 2012

Did you know that, prior to 1916, clinicians recorded their patients’ notes in a single common log that was kept on each hospital ward? There was no such thing as an individual patient chart until the idea took hold at Presbyterian Hospital in NYC, one hundred years ago.

“Fold the worst events of your life
into a narrative triumph.”
~Andrew Solomon~
Still, back then, there were no guidelines as to what went into the chart, how information should be recorded, or where it belonged. Not until the 1970’s, when Dr. Lawrence Weed created the problem-oriented medical record (POMR), was there any organization or consistency to the clinical note. In other words, it was hard for all the people involved in the patient’s care to follow his clinical course or to extract information from his haphazard record. It was time-consuming and error-ridden.
This kind of thing is not acceptable when it comes to practicing medicine. Nor is it tolerated in literature.
Imagine reading a mystery that reveals clues to the crime in no logical order. Imagine a romance that fails to capture the growing passion between two lovers. Readers have certain expectations that attract them to certain genres, and each genre follows its own set of conventions in order to satisfy the reader. Without this predictability and order, readers are likely to abandon the story out of confusion or disappointment.
For example, in writing mystery, plot is everything. The main character must be the detective or sleuth. The crime should be sufficiently violent (ie. murder) or cruel so as to engage the reader’s interest and curiosity. The details of the crime must be accurate and plausible (when, where, why, and how it was committed). The detective must solve the mystery using rational/scientific methods…rather than depending upon divine intervention, pure coincidence, or gratuitous drama. Justice must be served. This is what the mystery reader wants.
“Plot is a literary convention.
Story is a force of nature.”
~Teresa Nielsen Hayden~
In romance, on the other hand, a love story must be at the center of the plot. The lovers must encounter and overcome obstacles to their relationship. The ending has to be emotionally satisfying and optimistic, with a happy outcome. Romance readers expect this. They don’t want the relationship to fail.
Simply put, if you enjoy reading romance, you may not be entertained by blood thirsty creatures from the netherworld. Likewise, if you love horror, fairies and elves may not be your thing.
This is why authors in different genres observe certain “conventions” when they write…widely used and accepted techniques in literature that embody the readers’ expectations and promote satisfaction with the course and outcome of the story. Within this general framework, the details can vary with regard to time period, setting, characters, and plot.
Likewise, every patient’s story is different. No two heart attacks, no two cancers, no two injuries are ever the same…so it’s good we have a framework for recording our patients’ stories. Most of us have been trained to write our notes according to the SOAP format—Subjective, Objective, Assessment, and Plan. What patients tell us about their illness is considered “subjective” information, recorded as the HPI—the history of the present illness. We learn more about the main character in the PMH (past medical history), FH (family history), and SH (social history). Clues to the diagnosis are found in the objective realm of the physical examination and tests we order. All the elements of the story come together in our assessment. In our plan, we consider all the ways the story might end.
Because the practice of medicine embodies narrative elements, it makes sense to train health professionals in narrative skills: how to listen to the patient, how to interpret what we hear, what the patient means by it, and how to record his story. Ultimately, the goal of training in narrative medicine is to allow ourselves to be personally moved to action on behalf of the patient.
“I use the term narrative medicine to mean
medicine practiced with these narrative skills of
recognizing, absorbing, interpreting,
and being moved
by the stories of illness.”
~Rita Charon~


Tuesday, June 20, 2017

close encounters of the worst kind


This was a fairly average week for me as I moved in and around my community. I ran into three women I know who have lost children, one of them to suicide. I spotted a patient of mine in church who is losing her fight against cancer, and another one who is still waiting for her test results. I spent an evening with a friend who donated a kidney to save her brother’s life.
Because I practiced medicine in my community for over thirty years, I have a unique vantage point when it comes to knowing who is in pain. I run into patients on the street, at the post office, and in the sub shop in town. I know who just had open heart surgery, whose marriage is in trouble, and who is battling addiction. Still, I don’t think these encounters are unique to physicians.
Whether we realize it or not, we all live among people who have endured heartache and suffering that would bring Job to tears. We encounter them wherever we go. The problem is we don’t always recognize them.
“It may take a doctor
to diagnose someone’s disease,
but it takes a friend
to recognize someone’s suffering.”
You can’t always tell by looking at a person what they’re up against—that divorce is in the air, or that a coworker’s cancer came back. It’s hard to know when someone is contemplating suicide. They don’t want anyone to know so they do what they can to hide it.
Many people in pain get out of bed in the morning just like the rest of us. There is nothing strange or special about the way they dress. They get their children off to school, and spend time tending to the house or they go to their jobs. They are right there behind us in the checkout line at the grocery store, on the treadmill next to us at the gym, and in the pew in front of us at church. Or on the cushion next to us in meditation. We can’t see their broken hearts or crushed spirits so it can be hard to pick them out of the crowd. 
“The moment you change your perspective
is the moment you rewrite
the chemistry of your body.”
~Dr. Bruce Lipton~
This means a couple of things. First of all, if we don’t know their stories, we can’t help people heal. When we meet them on the street, we can comment on the weather, or commiserate over the sad state of politics in our country, or chat about the grandchildren, but we are prevented from expressing our concern for them, or sharing words of comfort and encouragement. In our offices, we ask about the onset, severity, and timing of their symptoms, but our questions dance around the underlying pain that is eating them alive. As health care providers, therapists, and caretakers, as neighbors and friends, as co-workers and acquaintances, we are helpless unless we know the true story. The whole story.
But enough about us.
Untold illness narratives have a way of hiding out in the subconscious while wreaking havoc with the body. They play tricks on people. As Rita Charon puts it, in her ground-breaking book, Narrative Medicine-Honoring the Stories of Illness, “The body and the self keep secrets from one another.” The body may experience chest pain, when the problem is despair. The patient may see a physical therapist for a back injury when the cause of his pain is anger. People may turn to opiates for relief when their pain arises out of fear.
“The healing process begins
when patients tell of symptoms
or even fears of illness—
first to themselves, then to loved ones,
and finally, to health professionals.”
~Rita Charon~
Unless we seek out and explore the anger, or despair, or fear that is at the root of their pain, nothing we say or do will relieve the cause of suffering. All the medication in the world will not solve the problem.
“The shortest distance between
truth and a human being
is a story.”
~Anthony de Mello~

Sunday, June 11, 2017

a random rant

Tanzania, 2012
Today’s post is a random rant in keeping with my conviction that the American health care system is headed in the wrong direction. This issue came to my attention after my daughter gave birth last month. She reminded me of this outrage:
Back in October, 2016, a couple in Utah learned that, after the birth of their baby, the hospital charged them $40 for immediate post-partum skin-to-skin contact, a practice widely believed to be beneficial to the newborn who has just been unceremoniously propelled into a hostile environment, and to the mother whose life has just changed forever and ever, amen. This is considered the standard of post-partum care, unless it is contraindicated for medical reasons…for example, newborn resuscitation.
Image result for kangaroo care quotes

The couple was flabbergasted at this charge. Their post went viral. It was explained to them that, nowadays, so-called “kangaroo care” is considered to be an intervention. It has its own billable code, and therefore, incurs an extra charge. It also requires supervision by an additional nurse whose salary has to be covered…for supervising a mother cradling her baby on her chest.
“I just want to lay on your chest
and listen to your heart.”
It makes one wonder. How many mothers have dropped their babies in the delivery room? Since when did an age-old, cross-cultural, intuitive and nurturing post-partum practice become an intervention?
What is the price of maternal love?
“Nowadays people know
the price of everything
and the value of nothing.”
~Oscar Wilde~



Sunday, June 4, 2017

check your assumptions at the door


The same illness can be understood in different ways by different people. Nowhere is this more troubling than in the doctor’s office. The unspoken biopsychosocial elements that distinguish the physician from the patient pose a real obstacle to effective communication.
“I know that you believe
you understand what you think I said,
But I am not sure you realize
that what you heard
is not what I meant.”
~Robert McCloskey~
The physician may see illness as a puzzle to solve, or a challenge to overcome. He understands the problem in technical terms. He can describe how the anatomy and physiology have gone haywire, recite the tests that need to be done to prove it, and rattle off the latest peer-reviewed protocols for treatment. He may be doing a bang-up job of caring for his patient, so it confuses him when his patient doesn’t respond.

On the other hand, depending on his beliefs, the patient may see his illness as a punishment, a failure on his part, or a random manifestation of universal injustice. His clinical course can be aggravated by guilt. He tells himself he should have quit smoking sooner, or watched his diet more carefully, or kept up his exercise program. But because now he has a spot on his lung, or a stent in his heart, he thinks it’s too late. Why start now, he wonders.

Illness can also be complicated by grief, as in the case of a woman who relives her mother’s losing battle with breast cancer when she discovers the lump in her own breast. She may be skeptical about her treatment options, or reluctant to begin therapy, having watched her mother suffer to no avail.

Some people cling to the belief that prayer is the answer, even when it doesn’t work for them.
Patients make certain assumptions about the nature and course of disease based on observation, experience, belief, hope, and expectation that can affect their motivation, and even their ability to heal.
“Check your assumptions.
In fact, check your assumptions at the door."
~Lois McMaster Bujold~
The physician is unlikely to take these factors into account unless he anticipates them and asks about them. The patient is unlikely to bring them up on his own out of shame, or guilt, or grief, or fear unless he is invited and encouraged to share them.

Doctor/patient communication is difficult enough without the specter of false assumptions. They are, nevertheless, a clue to the patient’s history. They are an important a piece of his narrative.

“Nobody cares how much you know
until they know how much you care.”
~Theodore Roosevelt~



Tuesday, May 30, 2017

the missing piece

If you are a health care provider or therapist in any discipline, you may find yourself frustrated from time to time when a patient does not respond to treatment. You find yourself questioning the diagnosis. You ask the patient about his symptoms over and over again, re-examine him, and order additional tests without getting anywhere. Something doesn’t add up. There must be a missing piece. Too often, the patient is labelled as uncooperative, difficult, or mentally ill...when you may not have heard the patient’s whole story.
“The simple yet complex act of listening is,
in and of itself,
a clinical intervention.
Listening constitutes the very heart and soul
of the clinical encounter.”
~Mary T. Shannon~
Some days there just isn’t time to explore the details of his illness with every patient. Perhaps you’re running behind schedule, or an emergency interrupts you. Some patients can’t bear to disclose the sorrow or fear or shame that underlies their symptoms. Some remain in denial for reasons we don’t understand.
Rita Charon pioneered the practice of “narrative medicine” almost twenty years ago as a path to help clinicians uncover the missing piece in their patients’ histories. It trains the healer to recognize the fact that the problem exists, and then to elicit the patient’s untold story—to listen, receive, interpret and apply what the patient reveals.
Image result for rita charon
This is how she begins with a new patient. She simply invites the patient to “tell me what you think I should know about your situation.” Then she listens to the patient without interrupting, clarifying, correcting, or taking notes. Instead, she focuses her attention on what is revealed and how it is communicated…paying attention to the patient’s posture and gestures, images and metaphors, facial expressions, and the characters who play a role in the story. This approach may take more time at the beginning but, in the long haul, it saves us from revisiting the history again and again, from ordering unnecessary tests, and from wasting time and resources on ineffective interventions because of what we have missed.
“I am, by calling,
a dealer in words;
and words are, of course,
the most powerful drugs used by mankind.”
~Rudyard Kipling~
When we reach into our patients’ cholesterol-laden hearts to understand why they are poisoning themselves with food, we need to know more than what they putting into their mouths. When we let the patient talk, we may discover that the real reason for this one’s fatigue or that one’s intractable headache is end-stage disappointment or anger or shame that has festered for years.
Only then we can help them heal.
“Histories must be received,
not taken.”
~Sir Richard Bayliss~

Monday, May 22, 2017

off topic...but not really

A friend of mine recently returned from a trip to Machu Picchu, one of the “new” seven wonders of the world. In my humble opinion, the self-proclaimed experts who, back in 2000, voted to rename the Seven Wonders of the World, missed the point. They were looking at manmade monuments and structures of lasting beauty and grandeur while overlooking what I believe to be the Seven True Wonders of the World. I was reminded of them last week with the arrival of my newest grandson. This is what was so extraordinary about it:

Oh, and sex…where it all begins.
When you consider all the changes the body has to orchestrate flawlessly in order for a healthy baby to enter the world—the timing of the hormonal and anatomical changes, the electrochemical shifts, the first breath—it astounds me that it ever goes according to plan. So much can go wrong…and often does. If you want to hear inspiring stories…as well as sometimes tragic stories…listen to a group of women sharing their birth experience.
“The mind of a woman in labor
is power unestimated."
They will tell you how excruciating pain leads to immense joy…or, when the process fails, to deepest sorrow. They will describe fear, even panic, at the slightest suggestion of trouble. They may reflect back on how hard it was to get pregnant…or how easy or even unexpected it was. How they learned the meaning of longing and of love.

“Story is the umbilical cord
that connects us to the past, present, and future…
Storytelling is an affirmation of our ties
to one another.”
~Terry Tempest Williams~
There is nothing new in the history of childbirth, but there are an infinite number of unique stories about it. Birth narratives are packed with sensory and emotional detail, victory and defeat, courage and cowardice, mystery and manifestation. Each story is epic in scope…part fantasy, part mystery, part thriller, part love story. Something for everyone.
Every birth is a wonder to behold.

“There are no seven wonders of the world…
There are seven million.”
~Walt Streightiff~


Wednesday, May 3, 2017

ten reasons to join a writing group...or start one

Here are ten good reasons you might be interested in joining a narrative medicine writing group:
1.      You are a health care provider or a therapist in any field. You have been a patient at some point in your life, or you know someone who is. Trust me: you have plenty to write about.
“Anybody who has survived his childhood
has enough information about life
to last him the rest of his days.”
~Flannery O’Connor~
2.      People keep telling you, “You really should write a book…” because of all you have endured and overcome, or because of your special expertise, or exceptional courage, or unique perspective.
3.      You keep telling yourself, “But I’m not a writer,” even though there’s a story chiseling a hole in your heart…something that caused such sorrow, or anger, or despair you can’t bear to revisit it, or such relief, or gratitude, or inspiration you can’t imagine how you would put it into words.
“There is no greater agony
than bearing an untold story
inside of you.”
~Maya Angelou~
4.      You keep telling yourself, “I wouldn’t know where to begin,” even though you’ve been over the details in your mind a thousand times.
5.      You keep telling yourself, “My life (or work or experience…) is so ordinary, I have nothing interesting to say, nothing new to add, nothing helpful to share.”
“Write what disturbs you, what you fear,
what you have not been willing to speak about.
Be willing to be split open.”
~Natalie Goldberg~
6.      You like to write, but convince yourself you’re not good enough at spelling, grammar, or punctuation to share what you have written.
“If you hear a voice within you saying:
you are not a painter,
then paint by all means, lad,
and that voice will be silenced…”
~Van Gogh~
   The same can be said for writing.
7.      You think you’re too busy. (You’re not.)
8.      You’re afraid you’ll offend someone if you write the truth…the surgeon who botched your operation, or your uncle who abused you as a child, or the colleague you don’t trust.
“All you have to do
is write one true sentence.
Write the truest sentence you know.”
~Ernest Hemingway~
9.      As a patient, you sometimes feel like giving up. If you’re a provider, you sometimes feel like quitting.
10.  You harbor questions you can’t answer…doubts that won’t go away…pain that nothing can heal.
“While medicine creates material for writing,
perhaps even more important is that
it also creates a psychological and emotional
need to write.”
~Daniel Mason~
If you’re still not sure writing is for you, I’d like to recommend a couple of good books for beginning writers, especially those who are reluctant to get started:
·         The Artist’s Way by Julia Cameron
·         If you Want to Write by Brenda Ueland
·         Writing from the Heart by Nancy Aronie
If you’re interested but can’t find a narrative medicine writing group near you…think about starting one.

Sunday, April 23, 2017

physician, advocate, friend


As a retired physician, I sometimes find myself in a role I am passionate about. I am sometimes invited to accompany friends to their appointments with specialists.
I took a friend with neuro-sarcoidosis to see a physician who specializes in this rare condition at Hopkins. I went to the oncologist with a friend who had a rare retro-peritoneal sarcoma to learn what options were available to her.
“The good physician treats the disease.
The great physician treats the patient
who has the disease.”
~William Osler~
To me, this is a great honor. They are asking me to listen with expert ears to the medical-ese--a foreign language to them--that specialists tend to use when discussing rare or life-threatening conditions. They count on me to help them make difficult decisions. They haven’t studied anatomy. They don’t have access to clinical trials. They don’t understand morbidity and mortality statistics. They want to know how long it will be until they feel better. When they can get back to work. Whether or not they will live to see their first grandchild.
Not only can I provide a “second set of ears” to help them recall important information…but I am able to interpret what we are told, and to translate it into a language they can understand.
True story:
Last week I sat with a friend who was seeking a second opinion from a specialist about complications that arose following surgery to reverse a gastric bypass. That was two years ago. She has undergone 6 procedures since then in a failed effort to close fistulas that developed at the operative site and never healed. One of them has opened out to the skin and drains continuously. No matter what she eats or drinks, some of it ends up draining out through the opening…coffee, ice cream, noodles, corn.
“We don’t know how strong we are
until being strong is our only choice.”
~author unknown~
Her surgeon had nothing else to offer so he referred her to one of the top bariatric surgeons in our area for her thoughts on how to proceed.
The technical details were only part of the problem with this discussion. Honestly, my friend doesn’t much care about the details. She just wants to be healed, whatever it takes…which in her case would be a “miracle” according to this doctor. She described a risky and complicated procedure which would involve a whole team of surgeons, each lending his/her own expertise…and still there was no guarantee the fistula would close. Things could get worse instead of better. My friend could die.
Or…she could consider doing nothing. As hard as it is to imagine, she is still working. She maintains her home and yard by herself, and she gets around on her own. It’s just this awful, foul drainage that gets her down.
So now that she understands her situation, her treatment options, and her prognosis, the hard work begins. Facing reality. Surrendering to it. Pushing through. Maintaining some semblance of the resilience and determination that have kept her going these past two years.
As a physician, my job is done. I listened. I understood. I translated.
As an advocate and friend, though, my job is just beginning…
“Some patients,
though conscious that their condition is perilous,
recover their health simply through their contentment
with the goodness of the physician.”
PS: Every week I contemplate a topic for this blog. For inspiration, I sometimes read up on the field of narrative medicine. Sometimes I look into medical research. I often reach back into my own memory and experience. Last week, though, this story was hand-delivered to me by pure chance. It would be gratifying if, after reading this woman’s story, someone were prompted to offer a prayer for her. If someone found the strength and courage to continue his own medical battle, or to reach out to a friend who is facing a life-threatening illness. Each one a step on the journey toward healing. Thanks for listening.