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.
Sometimes.
 
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.”
~Hippocrates~
jan
 
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.
 


Wednesday, April 12, 2017

how storytelling reopens the wound

 
If you are reading this blog, you probably have some familiarity with or curiosity about the concept of storytelling as a healing practice. If you are a health care provider, a therapist in any field, or a caregiver—or if you have ever been sick yourself—you may have an untold story wreaking havoc in the back of your mind. Perhaps it reflects a difficult, sad, or frightening episode in your past…something you’d rather not resurrect. Maybe there was a time of such joy or relief or healing you can’t imagine putting it into words so you haven’t even given it a try.
 
“A writer is someone
for whom writing is more difficult
than it is for other people.”
~Tomas Mann~

 
Or…perhaps you’ve started the story again and again and gotten nowhere with it. It turns into a rambling description of places, persons and events that fails to capture the emotions that made the experience meaningful to you.

This is where a good writing prompt can be helpful. That and a supportive reader who knows how hard this is for you and heaps praise upon you just for trying.
If you need a little nudge to get you started, here a of couple of writing prompts for health care providers that may help:
·         Write about “expectations” you’ve embraced (or rejected).

·         Tell us what it feels like to work without sleep, on an empty stomach in the middle of the night.

·         What goes through your mind on the way to work in the morning…or on your way home at the end of the day.
If you were sick, or caring for someone who was ill, try these:
·         Write about your hands.

·         Tell us what you fear the most.

·         Tell us what you do to care for yourself.

When you begin, don’t worry about grammar, spelling, or punctuation. That’s the easy part. It comes later.
Instead, write about the first thing that comes to mind.
 
“When in doubt,
tell the truth.”
~Mark Twain~

 
Give yourself 15 minutes or so at it, then rest. Wait a couple of days and then try again. Write until you come up against the piece that is hardest to write…a time when you were so sad or scared or angry you still hesitate to commit it paper…or so comical or comforting or inspiring it leaves you groping for words.
“The most important things are
the hardest to say,
because words diminish them.”
~Stephen King~

 
When you write, include details even if they seem insignificant. The missing tile on the ER wall. The overflowing trash can in the visitors’ lounge. The ladybug that made its way into the OR. These familiar images connect the reader to your story. Use the senses to bring the scene to life. The sight of blood pumping out of a tiny artery after the other bleeders were all tied off. The taste of cold, black coffee in the middle of the night…and why you sometimes need it. The smell of stale urine.

 
“To create something exceptional,
your mindset must be relentlessly focused
on the smallest detail.”
~Giorgio Armani~

 
An untold story can leave us with a vague sense of frustration, anxiety, or confusion that we don’t understand, and can’t dispel until we put it into words. Until we set the scene, name the players, and face the feelings that have festered out of sight for so long.
Storytelling unmasks the wound so healing can begin.
“There is no greater agony
than bearing an untold story inside you.”
~Maya Angelou~
jan

 

 

 

 

 
 
 

 

 

 

 




Tuesday, April 4, 2017

more than meets the eye

 
I called my best friend last night. We don’t get to see one another very often, but we talk every week. After we catch up on all the things that keep us busy, the conversation turns to friends and family.
Here are a couple of the stories we shared this week:
 
·        My friend described the plight of a woman who has undergone eight operations in a futile effort to eliminate a recurring MRSA infection post-total knee replacement.
·        She expressed her concern for a neighbor in her seventies who took a tumble and broke her hip, and then, a few weeks later, fell again and suffered a subdural.
·       We discussed the story of a woman from her church who is losing her battle against metastatic breast ca.
·        I told her that a friend of my daughter’s, recently married, had suffered a miscarriage over the weekend.
…not one happy moment among them.
The thing is that these occurrences are not uncommon. We encounter them every day. In fact, stories like these are so commonplace we are tempted to dismiss their gravity and to overlook the emotional devastation that remains in their aftermath.
“Under the look of fatigue,
the attack of migraine, and the sigh
there is always another story.
There is more than meets the eye.”
~W H Auden~
But what if we knew those details? Are we interested, empathetic, compassionate or simply curious enough to ask? Is there more to the story?
·       The woman with the recurring MRSA will be going off IV antibiotics in a week or two. Every time she does, the infection recurs…seven times, so far. If it happens this time, she will be staring down the barrel at an amputation…
·        Several months earlier, the neighbor who fell and her elderly husband became foster parents to their grandson who was 9 months old at the time…
·       The woman with the metastatic breast cancer had entered hospice care. The question that arose for my friend was whether or not it was too late to give her a call. What could she possibly say?
·       The young woman, who under her doctor’s direction miscarried at home, described herself as feeling like a “monster” for having to flush her baby down the toilet.
There is always more to a story than first meets the eye. It pays to go deeper. To draw out the most painful details. How else will we know what a person needs? How to help? What to say?
“Everyone you meet is fighting a battle
You know nothing about.
Be Kind.
Always.
~various attributions~
Last night I spent an hour on the phone with another a friend whose autobiography should be titled, “Anything That Can Go Wrong, Will…” Her story is one of multiple oversights, erroneous assumptions, and mistreatment during a recent hospitalization that would give Stephen King nightmares, I kid you not. Untreated hypertension and untreated pain complicated by complacent nursing care. Today, she thanked me just for listening.
 
It turns out that narrative medicine is alive and well in every community, in every neighborhood and around every kitchen table. What is your story?
“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
 

 

 




Monday, March 27, 2017

irresistible communication



 

If you’re interested in storytelling as a diagnostic and therapeutic tool, you should get a copy of the book, “Irresistible Communication” by King, Novik and Citrenbaum. (It’s out of print but still available “used.”)
Image result for irresistible communication
 
In this book, the authors discuss subtle communication techniques that encourage and facilitate storytelling in the clinical setting, for example, when delving into a patient’s medical history. These techniques operate on a subconscious level to engage the patient/client in ways that relax him, and affirm the fact that he is being heard and understood. They enable the clinician to read the patient’s body language and to understand how the patient accesses and processes information—whether he is a visual, auditory or kinesthetic learner—and how this affects memory, receptivity and comprehension.
“Seek first to understand,
then to be understood.”
~Stephen Covey~
Some of this is accomplished by simply mirroring the patient’s posture, respiratory rate, eye movements and positional changes. If the patient is anxious and breathing rapidly, the clinician can begin by matching the patient’s respiratory rate and then gradually slowing and deepening his own breathing. When the patient is engaged, his breathing will begin to slow and deepen, enabling him to relax. His anxiety will then lessen.

Observing the patient’s eye movements can tell a lot about how the patient processes information. Whether his gaze is directed upward to the right, upward to the left, or to one side or the other suggests the predominate sensory pathway by which he accesses memory.
Let’s say the patient was involved in a car crash. You can get a good idea of how he remembers it by the direction of his gaze and the language he uses to describe the scene. For example, he may say, “I heard the tires squeal right before the truck slammed into my car,” while gazing sideways and to the right, where the impact occurred. He is processing the accident according to what he remembers hearing. If you ask him, then, “What color was the truck?” this will take him out of his story. His memory will blur and important information may be lost, whereas if you ask him, “What else did you hear?” he may recall the sound of crumpling metal, broken glass, the voices of people coming to help, the sirens…all in accurate detail. He may never remember the color of the truck if he doesn’t process memory visually.

A visual person might recall the way the blood splattered on the windshield or way the lights were flashing in the ambulance. His gaze may be directed up and to the left or right as he recalls the details.

A kinesthetic learner might describe the shards of glass striking his face, or the sharp pain in his neck at the moment of impact.
The same traumatic experience can be recalled differently according to the patient’s predominant sensory processing pathway.

“To effectively communicate,
we must realize that we are all different
in the way we perceive the world and
use this understanding as a guide
to our communication with others.”
~Tony Robbins~
Interestingly, the clinician can put this information to use when treating the patient. The visual learner may benefit from written instructions or diagrams. The auditory learner may do better with a CD or audiotape. The tactile learner may constantly want to touch the injured area. Ask the visual learner, “Do you see what I’m saying?” Ask the auditory learner, “How does that sound to you?” Ask the kinesthetic learner, “How do you feel about that?”

Repeating or rephrasing what the patient says is another way to improve effective communication. Asking the patient to repeat instructions is also useful. How many times has a patient gone home with written instructions when he can’t read…
This, of course, is an oversimplification of a complex and intriguing approach to communication techniques. Since “Irresistible Communication” was published almost 35 years ago, a vast amount of research into the neurophysiology of sensory processing pathways has been published.

It reminds us that a lot more goes into narrative than telling a story, and listening involves a lot more than just hearing.
 
"I know that you believe you understood
what you think I said,
but I am not sure you realize
that what you heard is not what I meant.”
~Robert McCloskey~
jan


Thursday, March 23, 2017

memories are made of this


 
 

As a retired physician, I am bursting with memories. Some are biggies…like the five-hour ambulance ride it took to transport a fragile premie from a rural upstate hospital to the medical center where I was a resident. Lights and sirens the whole way. Or running a clinic out of a tent in the African bush without electricity or running water. Or prepping a patient who was sent to the OR by the emergency room doc for an appendectomy in the middle of the night…when my pre-op exam revealed a leaking aortic aneurysm instead. That got things moving!
On the other hand, some memories are brief, isolated moments that punctuate the middle of a busy day…a dousing with pee during a newborn exam, a spontaneous embrace or word of gratitude from an appreciative patient, a smile or a grimace or a groan.
 
“We don’t remember days.
 
We remember moments.”
~Cesare Pavese~

Monumental or trivial, happy or sad, memories stick with us. When you consider the number of patients we see every day over the course of our careers, all the details we tend to, all the information we process, it’s amazing we remember any of it.

Imagine, though, what it must be like for your patient. You may already have seen twenty patients that day. It’s all a blur. Each patient, on the other hand sees one physician or provider that day—you—and will be totally focused on this particular encounter. Years later, he may still recall the fear or dread that tempted him to cancel his appointment. The smell of cigarette smoke on your clothing. The impatient sigh that escaped when you glanced at your watch. How cold your hands were, or how warm. How hurried you were, or how kind…
 
“…You will never know the value 
Of a moment
Until it becomes a memory.”
~ Dr. Suess~

 …when you don’t remember the patient at all.
Whether you’re a provider or a patient, if you’re interested in narrative medicine, you have to tap into those memories. Relive those moments. Reflect on your experience. And share what you have learned.
“One day you will be just a memory
For some people.
Do your best to be a good one.”
~SharifahNor~
jan

Monday, March 13, 2017

it's not too late...yet




If you are interested in, or simply curious about the concept of narrative as an instrument of healing, you should run right out and pick-up a copy of “What Patients Say, What Doctors Hear” by Danielle Ofri, MD.
 
In this book, the author explores the doctor-patient relationship and tackles the issues of communication and miscommunication and how they affect medical outcomes. If you harbor any cynicism about the relevance of narrative medicine as a healing practice, you should read this book. If you want to learn more about it, you should read this book. Then lend it to a friend. Or two. Or three…
Among the issues she tackles are:
·       Obstacles to effective communication that suck the best of us dry—time constraints, over-booked schedules, exhaustion, and burdensome mandates and initiatives that have nothing to do with improving patient care
 
 

·       The importance of listening skills when obtaining the patient’s medical history, and how our body language, attention and response can intimidate or discourage the patient from sharing important parts of his story
 

 
·       The importance of our personal backstory, and how it affects our expectations and interactions with patients

·        How the use of jargon reflects our attitudes about patients, for example, referring to the disease rather than the person who has a disease (the diabetic, the epileptic, the asthmatic) or labelling the patient who “failed” treatment, the “poor historian”, or the “noncompliant” patient

·        The effect of gender, race, culture, socioeconomics, and religion on communication

·        How to break bad news to the patient and his family

·        The correlation between poor communication and malpractice claims, and the pros and cons of disclosing medical errors

·        How effective communication influences the perception of pain, and how this has been likened to a placebo effect

…none of which we learned about in medical school.
Thankfully, it’s not too late for us. Narrative medicine is all about communication as a healing practice. If it interests you, I recommend Ofri’s book. And…if you missed the debut conference on Narrative Medicine at Kripalu Center last summer, the good news is that they are running it again this year and registration is now open. You can find a link to this summer's conference here
Image result for kripalu center
www.kripalu.org

Among other leaders in the field, Rita Charon will be speaking.
Image result for Rita charon
www.youtube.com
Rita Charon
Rita Charon, MD, PhD, is professor of medicine and executive director of the program in Narrative Medicine at the College of Physicians and Surgeons of Columbia University. She completed her MD at Harvard Medical School and her doctorate in English at Columbia. A general internist, Rita took her PhD when she realized how central the telling and listening to stories is in the work of doctors and patients. She teaches literary theory, narratology, and creative writing to students and faculty at the medical center and in the graduate Narrative Medicine program. Rita is author of Narrative Medicine: Honoring the Stories of Illness, coeditor of Psychoanalysis and Narrative Medicine and Stories Matter: The Role of Narrative in Medical Ethics, and coauthor of the forthcoming Principles and Practice of Narrative Medicine.
Also attending again this summer will be Nancy Slonim Aronie (my fav).

Image result for nancy slonim
www.kripalu.org
Nancy Slonim Aronie

Nancy Slonim Aronie is the author of Writing from the Heart. She has been a commentator for National Public Radio’s All Things Considered, was a visiting writer at Trinity College in Hartford, Connecticut, wrote a monthly column in McCall’s magazine, and was the recipient of the Eye of The Beholder Artist in Residence award at the Isabella Stewart Gardner Museum in Boston. Nancy won teacher of the year award for all three years she taught at Harvard University for Robert Coles.

If you are interested…and you should be…check out https://kripalu.org/presenters-programs/narrative-medicine-cutting-edge-approach-healthcare. I’d love to meet you there.
 
jan 

 

 

 

 

Monday, February 13, 2017

what good is a story without a teller


 
 
What good is a story without someone to tell it? A story without someone to hear it?
True story:
A few years back, a young man in our community was involved in a terrible automobile accident. Prior to that day, he had a reputation as the high school jock, athletic and good looking. He was described as cool and cocky. He was well-liked, if sometimes irresponsible.
The accident left him in a coma for weeks. His doctors gave his family no hope for recovery based on the appearance of his scans. Nevertheless, his parents insisted upon continuing life support. He went from the intensive care unit to acute care to rehab over a period of six weeks or so with no improvement.
Then one day he opened his eyes. He started responding to simple commands. He was able to recognize the people at his bedside. Long story short, he went on to make a full recovery with the exception of a few subtle cognitive deficits. He came out of the experience a humble, caring young man with no recollection of the weeks he spent unconscious.
During his entire hospitalization, the boy’s mother kept a daily journal. It helped her remember what the doctors told her from day to day so she could process it when she had a few moments to herself.
 

She kept track of who visited her son, how kind and concerned they were, how heartbroken they felt. She recorded everything the doctors and nurses who cared for him said and did, and she recorded her own thoughts and feelings about her son’s condition.
The point is that without his mother’s journals, this entire period in his life would have been lost to him. He had no memory of it. It helped him immensely to read his mother's journals in order to make sense of what had happened to him and what a miracle his recovery represented. They reconnected him with his friends when he read about their bedside visits. He came to understand how close to death he’d come.
 
His mother's journals weren't lovely flowered books filled with beautiful prose. They were honest and raw and desperate...but they recorded reality for her son and filled in the blanks for him.

She wrote them at a time when she never imagined her son would read them for himself. That chapter in his life might have remained, forever, a story without a reader…and, except for his mother's journals, it might have remained a story without a writer.

PS: It will remain a matter of faith vs speculation as to whether a bedside visit from the boy's beloved dog had any effect on his recovery…but he woke up three days later.


 
jan

Monday, February 6, 2017

how will your story end?


photo thanks to Andrea Lauren


In my last post, I connected my decision to retire at an early age (if sixty is considered early…) with the evolution of a health care system that has become highly technical and increasingly impersonal. While this transformation may offer some advantages in terms of efficiency and productivity, it jeopardizes the patient/physician connection and ultimately, imperils the patient’s ability to heal.

I closed my practice after thirty years in Family Medicine because working within the system scared me. I told my patients and colleagues I was retiring…when I meant that I was quitting.


 


I didn’t put it quite that way, of course. It wasn’t as though I simply got fed up with things, turned in my stethoscope and tongue blades, and slammed the door on my way out of the office. I wasn’t impulsive about it at all. I agonized over the decision years.
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. 

www.pyramidcg.com
 
 
I didn’t retire because of the oppressive paperwork or its successor--an oppositional-defiant EMR system. I wasn’t defeated by our baffling coding and reimbursement system. The ever-present threat of litigation. A pharmaceutical industry that invests as heavily in marketing as it does in research. A health insurance industry whose number one priority is corporate profit.
That wasn’t what got to me. The problem was that, in an effort to see more patients faster, I was forced to send patients on their way knowing that I hadn’t heard the full story. I often sensed that something else was going on…some issue I didn’t have time to explore. For instance, why a patient’s breath reeked of alcohol when he had an appointment for a sore throat at nine-o’clock in the morning. It took me ten minutes to diagnose and treat his throat, while his alcoholism went untended. Who had time?
In an effort to squeeze more patients into the schedule, important parts of their stories were being missed, and that scared me. Failure to diagnosis is the #1 basis for malpractice claims in this country. Worse, I worried that a patient would suffer or die because I didn’t have time to hear the whole story.
What finally got to me was the erosion of my authority as a competent and caring physician by self-proclaimed intermediaries who had neither knowledge of nor concern for my patients’ wellbeing. By business managers who failed to understand the importance of the patient/physician relationship, and how it impacts the patient’s ability to heal. By corporate geniuses who dismissed the power of eye-to-eye contact, the importance of undivided attention, and the gift of understanding in favor of productivity quotients and RBRVS units.
In the end, the risk to my patients outweighed everything I held sacred in medicine. In the end, I had to leave.
End of story. End of rant.
 

jan