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.

 

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

 

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~

jan

 

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:

Ovulation

Fertilization

Implantation

Gestation

Labor

Delivery

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."

~www.thejoyofthis.com~

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~

jan

 

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.

jan

 

 

 





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.

 



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.”)



 

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



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

www.kripalu.org



Among other leaders in the field, Rita Charon will be speaking.

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).

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