Monday, August 14, 2017

true story

 


True story:
A friend of mine has been in terrible pain for over a year. She has orthopedic problems and degenerative disc disease in her back resulting in unrelenting sciatica. She also has a rare autoimmune disorder that requires her to be on chronic steroid treatment. Her initial workup, several years ago, found nothing operable so she has been taking substantial doses of opiates daily since then in a futile effort to control her pain. She can’t drive. She can barely make it up the stairs to her bedroom. She is experiencing a deepening depression because of it.

“You can avoid reality
but you can’t avoid the consequences
of avoiding reality.”
~Ann Rand~
 
Why hasn’t she gone back for re-evaluation?
 
Because, as she puts it, “They’ll think I’m a whiner.” She doesn’t want to take up the doctor’s precious time when other patients are worse off. She doesn’t have the language to describe her pain…not the nature of it, not the severity of it, not the timing of it. She tells herself she’s a sissy, that other people wouldn’t complain about it so she shouldn’t, either. She is convinced the doctor won’t find anything wrong and he’ll laugh her out of the office, or worse, he’ll assume she’s seeking drugs. Or, worse yet, he’ll decide she needs surgery after all, and she definitely doesn’t want that.
 
Her situation illustrates some of the obstacles patients encounter when trying to tell their story--the chief complaint and the history of the present illness.
 
What happens in situations like this is that the patient lies. He minimizes the severity of his symptoms because he doesn’t want to sound like a complainer or weakling. He may be embarrassed to admit that he can’t keep up with things anymore because he’s afraid he’ll lose his job. Even if he suspects the gravity of the problem, he may be reluctant to learn the truth. For example, the patient with chest discomfort may describe it as indigestion or heartburn in an attempt to dissuade the doctor who is sure he has CAD.
 
“You’d be surprised
what lengths people will go to
not to face what’s real and painful inside them.”
~unknown~
 
These are some of the obstacles that serve to confound the patient’s narrative: denial, shame, fear, ignorance, and dread.
 
To make a long story short, at my insistence my friend scheduled an appointment to see her pain management specialist. I’ll be going with her that day because, as a physician, I know what she's up against. As a writer, I think I can help her tell her story.
 
“One day I will find the right words
and they will be simple.”
~Jack Kerouac~
 
jan

 

 

 

 

 





Sunday, August 6, 2017

when storytelling is a life-saving skill


The art of storytelling is as old as the spoken word. It’s an important part of every culture, race and religion. It entertains, informs, and connects mankind across time and space.

Most people enjoy reading or listening to stories at their leisure. The health care provider, on the other hand, listens to stories all day long because it’s part of his job. The first thing he does when he sits down with a patient is to elicit the history, or story, of the patient’s illness. It forms the basis of all that follows: performing the physical examination, arriving at a diagnosis, and formulating a treatment plan for the patient.

The health care provider listens for specific details that help him make the diagnosis. If the patient’s problem is pain, the provider needs to know where the patient feels it, whether it’s sharp or dull, steady or throbbing, constant or intermittent. He needs to know how long the patient has had the pain—for a day? For a week? For years? What makes it worse? What makes it better? For example, the pain associated with a migraine headache is throbbing whereas in a tension headache it is usually steady. Gallbladder pain can come and go for months whereas the patient with appendicitis has steady pain and usually seeks medical care within a day or two. These are important details.

The problem is that patients don’t know what the physician needs to hear. They don’t arrive at the office with a list of relevant signs and symptoms. It’s the provider’s job to ask about them, but he has only so much time to get to the bottom of the patient’s problem.

www.fotosearch.com

For this reason, doctors often redirect the patient who appears to be getting off-track or is slow coming up with answers. In fact, one frequently quoted study found that most physicians interrupt and redirect the patient when they are as few as 18 seconds into the interview. Frequent redirection leads the patient to believe that what he wants to say isn’t important or relevant. Instead, he tries to give the doctor the information he needs while other parts of the story go untold.
 
Let’s say the patient presents with a three day history of abdominal pain. He answers all of his doctor’s questions. The pain has been present for four days. It started in his upper abdomen, but now it is diffuse. The pain is constant and it radiates into his back. Eating makes it worse. In fact, the patient says he hasn’t been able to keep anything down for the past two days. After a focused physical exam, and after running a few tests, the physician correctly diagnoses him with acute pancreatitis. But that doesn’t explain why the patient starts to complain of a headache, has trouble keeping his balance and appears confused twenty-four hours after being admitted to the hospital.

What the doctor doesn’t know is that the patient has been drinking heavily because his wife walked out on him recently. In fact, he blacked out a couple of days ago and he woke up on the floor next to the bed. The patient didn’t mention it because he was busy answering the doctor’s questions about his stomach ache. So the doctor missed the small subdural bleed the patient sustained during the fall until days later when he finally developed symptoms.

This is a theoretical scenario but it highlights an important problem. Obtaining an accurate and complete medical history takes time. When the patient is constantly redirected in order to satisfy the provider’s agenda, important parts of the story may be left out.

This reinforces the importance of the patient’s narrative in medicine. It isn’t just “nice” to know the whole story. Besides being a sign of respect and concern, the ability to listen to the patient can be a life-saving skill.
*
www.en.wikipedia.org
"You treat a disease:
you win, you lose.
You treat a person:
I guarantee you win--
no matter what the outcome."
~Patch Adams~
*
jan
































Monday, July 31, 2017

empty-handed and broken-hearted

 


I learned something new today. This is reason to celebrate because some people like to joke about my incipient dementia. At least, I think they’re joking.

I was contemplating the theme for this post—“primum non nocere”—and its English translation—“First do no harm.”—when I learned that this saying has nothing to do with the Hippocratic Oath. This was news to me. It actually comes from Hippocrates’ writings in “Epidemics”: “The physician must…do no harm.” These words are the bedrock of medical ethics and practice even today.

In fact, many of the traditions that influence the way we practice modern medicine were passed down to us by men like Hippocrates. Not because women were excluded from the practice of the healing arts in ancient Greece. On the contrary, way back then, women were highly respected as physicians and healers. Even Plato held them in esteem. Though they were few in number, patients sought them out. They were regarded as the “wise women” of the community. Their “soft hands” were considered to be “healing hands”.

“Have a heart that never hardens,
a temper that never tires,
a touch that never hurts
~Charles Dickens~
 
But as the science of medicine advanced, the feminine ethic lost credibility. Its wisdom and power to heal were disdained in favor of dispassionate technical expertise—testing, procedures, and proofs. Today speed and efficiency reign, and reimbursement issues drive the system. Over time, tradition has suffered, and as a result, patient care has suffered.
 
Unfortunately, one of the time-honored traditions that did survive is the one that expressly prohibits the physician from entering into a personal relationship of any description with a patient. This, of course, is an impossibility. It disavows the emotional intimacy that is the inevitable fruit of shared suffering. It contradicts the compassionate physician’s experience and denies him a powerful tool.

Today, the physician is taught that it is unprofessional to share his personal experience, insight, beliefs, or values with the patient. This rule of non-engagement was hammered into our heads during training when we were still easily moved to empathy, at a time when connectedness with other human beings was still something to be desired and defended.

“The good physician treats the disease.
The great physician treats the patient
who has the disease.”
~William Osler~
 
Sadly, this means that patients may know more about their hairdresser or mechanic than they know about their doctor—the person they trust with their health, with their children’s health, with their lives. This can be troubling for patients. They may have little choice when it comes to selecting a physician, and except for the credentials displayed on the walls in his office, they may know nothing at all about him. They worry about it and they should. Is he competent? Is he caring? What motivated him to undertake years of grueling study and training? What sustains him? What is it like for his family? How does he manage it all?
 
This precedent distances us from our patients at times in their lives when what they may need from us more than anything else—more than another prescription or another test or another procedure—is our presence with them, our strength, our compassion and support especially at times of serious illness and suffering. At times when fear and grief cut deep. At times when they may need to understand that nothing more can be done for them…or for someone they love—a friend, a spouse, or a child.

When our patients need us the most—that is, when there is no hope for recovery—we are trained to turn their care over to the nurses, their family, their pastor, or to hospice. We leave the patient’s bedside the way we approached it—as a stranger. We lose sight of the greatest gifts we can offer as healers—our time and attention. Our presence. Our touch.

“Some patients,
though conscious that their condition is perilous,
recover their health simply through their contentment
with the goodness of the physician.”
~Hippocrates (460-400 BC)~
 
We leave the bedside empty-handed, and sometimes broken-hearted.
 
“Tell me your story,
show me your wounds,
and I’ll show you what Love sees
when Love looks at you.
Hand me the pieces,
broken and bruised,
and I’ll show you what Love sees
when Love sees you.”
~from “When Love Sees You”~
~lyrics by Mac Powell~

jan

 



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!
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~
 
jan

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~

jan




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.”
~www.WishesMessages.com~
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~
 
jan



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
www.quotemaster.org

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.”
~www.beat-it2.blogspot.com~
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~

jan