Opening Up the Medical Chart

The thing to cling to is the sense of expectation.
Who knows what may occur in the next breath?
In the pallor of another morning we neither
Anticipated nor wanted!

… we live in wonder,
Blaze in a cycle of passion and apprehension
Though once we lay and waited for a death.

~Carolyn Kizer from “Lines to Accompany Flowers For Eve”

Over seventy years ago my maternal grandmother, having experienced months of fatigue, abdominal discomfort and weight loss, underwent exploratory abdominal surgery, the only truly diagnostic tool available at the time. One brief look by the surgeon told him everything he needed to know: her liver and omentum were riddled with tumor, clearly advanced, with the primary source unknown and ultimately unimportant.  He quickly closed her up and went to speak with her family – my grandfather, uncle and mother.  He told them there was no hope and no treatment, to take her back home to their rural wheat farm in the Palouse country of Eastern Washington and allow her to resume what activities she could with the time she had left.  He said she had only a few months to live, and he recommended that they simply tell her that no cause was found for her symptoms.

So that is exactly what they did.  It was standard practice at the time that an unfortunate diagnosis be kept secret from terminally ill patients, assuming the patient, if told, would simply despair and lose hope.  My grandmother passed away within a few weeks, growing weaker and weaker to the point of needing rehospitalization prior to her death.  She never was told what was wrong and,  more astonishing, she never asked.

But surely she knew deep in her heart.  She must have experienced some overwhelmingly dark moments of pain and anxiety, never hearing the truth so that she could talk about it with her physician and those she loved.  But the conceit of the medical profession at the time, and indeed, for the next 20-30 years, was that the patient did not need to know, and indeed could be harmed by information about their illness. 

We modern more enlightened health care professionals know better.  We know that our physician predecessors were avoiding uncomfortable conversations by exercising the “the patient doesn’t need to know and the doctor knows better” mandate.  The physician had complete control of the health care information–the details of the physical exam, the labs, the xray results, the surgical biopsy results–and the patient and family’s duty was to follow the physician’s dictates and instructions, with no questions asked.

Even during my medical training in the seventies, there was still a whiff of conceit about “the patient doesn’t need to know the details.”   During rounds, the attending physician would discuss diseases right across the hospital bed over the head of the afflicted patient, who would often worriedly glance back and worth at the impassive faces of the intently listening medical student, intern and resident team.   There would be the attending’s brief pat on the patient’s shoulder at the end of the discussion when he would say, “someone will be back to explain all this to you.” But of course, none of us really wanted to and rarely did.

Eventually I did learn how important it was to the patient that we provide that information. I remember one patient who spoke little English, a Chinese mother of three in her thirties, who grabbed my hand as I turned to leave with my team, and looked me in the eye with a desperation I have never forgotten.   She knew enough English to understand that what the attending had just said was that there was no treatment to cure her and she only had weeks to live.  Her previously undiagnosed pancreatic cancer had caused a painless jaundice resulting in her hospitalization and the surgeon had determined she was not a candidate for a Whipple procedure.  When I returned to sit with her and her husband to talk about her prognosis, I laid it all out for them as clearly as I could.  She thanked me, gripping my hands with her tear soaked fingers.  She was so grateful to know what she was dealing with so she could make her plans, in her own way.

Forty years into my practice of medicine,  I now spend a significant part of my patient care time providing information that helps the patient make plans, in their own way.  I figure everything I know needs to be shared with the patient, in real time as much as possible, with all the options and possibilities spelled out.  That means extra work, to be sure,  and I spend extra time on patient care after hours more than ever before in my efforts to communicate with my patients.  I’m not alone as a provider who feels called to this sharing of the medical chart – the nationwide effort is referred to as Open Notes.

Every electronic medical record chart note I write is sent online to the patient via a secure password protected web portal, usually from the exam room as I talk with the patient.  Patient education materials are attached to the progress note so the patient has very specific descriptions, instructions and further web links to learn more about the diagnosis and my recommended treatment plan.  If the diagnosis is uncertain, then the differential is shared with the patient electronically so they know what I am thinking.  The patient’s Major Problem List is on every progress note, as are their medications, dosages and allergies, what health maintenance measures are coming due or overdue,  in addition to their “risk list” of alcohol overuse, recreational drug use including marijuana, eating and exercise habits and tobacco history.  Everything is there, warts and all, and nothing is held back from their scrutiny.

Within a few hours of their clinic visit, they receive their actual lab work and copies of imaging studies electronically, accompanied by an interpretation and my recommendations.  No more “you’ll hear from us only if it is abnormal” or  “it may be next week until you hear anything”.   We all know how quickly most lab and imaging results, as well as pathology results are available to us as providers, and our patients deserve the courtesy of knowing as soon as we do, and now regulations insist that we share the results.   Waiting for results is one of the most agonizing times a patient can experience.   If it is something serious that necessitates a direct conversation, I call the patient just as I’ve always done.  When I send electronic information to my patients,  I solicit their questions, worries and concerns by return message.  All of this electronic interchange between myself and my patient is recorded directly into the patient chart automatically, without the duplicative effort of having to summarize from phone calls.

Essentially, the patient is now a contributor/participant in writing the “progress” (or lack thereof) note in the electronic medical chart.

In this new kind of health care team, the patient has become a true partner in their illness management and health maintenance because they now have the information to deal with the diagnosis and treatment plan.  I don’t ever hear “oh, don’t bother me with the details, just tell me what you’re going to do.”  

My patients are empowered in their pursuit of well-being, whether living with chronic illness, or recovering from acute illness.  No more secrets.  No more power differential.  No more “I know best.”

After all, it is my patient’s life I am impacting by providing them open access to the self-knowledge that leads them to a better appreciation for their health and and clearer understanding of their illnesses.

As a physician, I am impacted as well; it is a privilege to live and work in an age where such illumination in a doctor~patient relationship is possible.

Keeping Your Face Hidden

 

 

 

 

 

Vast whisp-whisp of wingbeats
awakens me and I look up
at a minute-long string of black geese’
following low past the moon the white
course of the snow-covered river and
by the way thank You for
keeping Your face hidden, I
can hardly bear the beauty of this world
~Franz Wright from “Cloudless Snowfall”

 

 

 

A psalm of geese
labours overland

cajoling each other
near half…

The din grew immense.
No need to look up.

All you had to do
was sit in the sound

and put it down
as best you could…

It’s not a lonesome sound
but a panic,

a calling out to the others
to see if they’re there;

it’s not the lung-full thrust of the prong of arrival
in late October;
not the slow togetherness

of the shape they take
on the empty land
on the days before Christmas:

this is different, this is a broken family,
the young go the wrong way,

then at daybreak, rise up and follow their elders
again filled with dread,
at the returning sound of the journey ahead.
~Dermot Healy from A Fool’s Errand 

 

 

 

We are here to witness the creation and abet it. We are here to notice each thing so each thing gets noticed. Together we notice not only each mountain shadow and each stone on the beach but, especially, we notice the beautiful faces and complex natures of each other. We are here to bring to consciousness the beauty and power that are around us and to praise the people who are here with us. We witness our generation and our times. We watch the weather. Otherwise, creation would be playing to an empty house.
~Annie Dillard from The Meaning of Life
 edited by David Friend

 

 

I am overwhelmed by the amount of “noticing” I need to do in the course of my work.  Each patient, and there are so many,  deserves my full attention for the few minutes we are together.  I start my clinical evaluation the minute I walk in the exam room and begin taking in all the complex verbal and non-verbal clues offered by another human being.

How are they calling out to me as they keep their faces hidden?

What someone tells me about what they are feeling may not always match what I notice:  the trembling hands, the pale skin color, the deep sigh, the scars of self injury.  I am their audience and a witness to their struggle; even more, I must understand it in order to best assist them.  My brain must rise to the occasion of taking in another person, offering them the gift of being noticed and being there for them, just them.

This work I do is distinctly a form of praise: the patient is the universe for a few moments and I’m grateful to be watching and listening. When my patient calls out to me, may they never feel they are playing to an empty house. May I always look for the beauty in their hidden faces.

Be Obscure Clearly

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A wind has blown the rain away
and blown the sky away
and all the leaves away,
and the trees stand.
I think, I too,
have known autumn too long.
~e.e. cummings

 

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Be obscure clearly.
~E. B. White

 

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As a family doctor in the autumn of a forty year career, I work at clarifying obscurity about the human condition daily, dependent on my patients to communicate the information I need to make a sound diagnosis and treatment recommendation.  That is hard work for my patients, especially when they are depressed and anxious on top of whatever they are experiencing physically.

There is still much unknown and difficult to understand about psychology, physiology and anatomy.  Then throw in a disease process or two or three to complicate what appears to be “normal”, and further consider the side effects and complications of various treatments — even evidence-based decision making isn’t equipped to reflect perfectly the best and only solution to a problem.  Sometimes the solution is very muddy, not pristine and clear.

Let’s face the lack of facts.  A physician’s clinical work is obscure even on the best of days when everything goes well.  We hope our patients can communicate their concerns as clearly as possible, reflecting accurately what is happening with their health.  In a typical clinic day we see things we’ve never seen before, must expect the unexpected, learn things we never thought we’d need to know, attempt to make the better choice between competing treatment alternatives, unlearn things we thought were gospel truth but have just been disproved by the latest double blind controlled study which may later be reversed by a newer study.   Our footing is quicksand much of the time even though our patients trust we are giving them rock-solid advice based on a foundation of truth learned over years of education and training.   Add in medical decision-making that is driven by cultural, political or financial outcomes rather than what works best for the individual, and our clinical clarity becomes even further obscured.

Forty years of doctoring in the midst of the mystery of medicine: learning, unlearning, listening, discerning, explaining, guessing, hoping,  along with a little silent praying — has taught me the humility that any good clinician must have when making decisions with and about patients.  What works well for one patient may not be at all appropriate for another despite what the evidence says or what an insurance company or the government is willing to pay for.  Each person we work with deserves the clarity of a fresh look and perspective, to be “known” and understood for their unique circumstances rather than treated by cook-book algorithm.  The complex reality of health care reform may dictate something quite different.

The future of medicine is dependent on finding clarifying solutions to help unmuddy the health care decisions our patients face. We have entered a time of information technology that is unparalleled in bringing improved communication between clinicians and patients because of more easily shared electronic records.  The pitfall of not knowing what work up was previously done can be a thing of the past.  The risk and cost of redundant procedures can be avoided.  The time has come for the patient to share responsibility for maintenance of their medical records and assist the diagnostic process by providing online symptom and outcomes follow up documentation.

The benefit of this shared record is not that all the muddiness in medicine is eliminated, but that an enhanced transparent partnership between clinician and patient develops,  reflecting a relationship able to transcend the unknowns.

So we can be obscure clearly.  Our lives depend on it.

 

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To Thank the Light

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Now a red, sleepy sun above the rim 
Of twilight stares along the quiet weald, 
And the kind, simple country shines revealed 
In solitudes of peace, no longer dim.
The old horse lifts his face and thanks the light, 
Then stretches down his head to crop the green. 
All things that he has loved are in his sight; 
The places where his happiness has been 
Are in his eyes, his heart, and they are good.
~Siegfried Sassoon from “Break of Day”

 

 

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I am growing older along with my horses. I think of them out to pasture throughout my workday as I continue to climb in the harness to pull the load as fast and hard as I can muster, returning home in the evening sore and weary.

I think of them with the morning sun on their withers, the green blades under their feet, as they search for the sweetest tender patch to munch.

They remind me to bring the calm of the pasture inside to balance the noise and bustle and troubles found in the clinic.  There still is peace and light to be found; I have only to look for it.

 

“To practice medicine with good spirit does not mean to be in a place where there is no noise, trouble or hard work. It means to bring your calm and loving heart right into the midst of it.” from www.theheartofmedicine.org

 

 

 

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Take My Waking Slow

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I wake to sleep, and take my waking slow.   
I feel my fate in what I cannot fear.   
I learn by going where I have to go.
We think by feeling. What is there to know?   
I hear my being dance from ear to ear.  
I wake to sleep, and take my waking slow.
Of those so close beside me, which are you?   
God bless the Ground!   I shall walk softly there,   
And learn by going where I have to go.
Light takes the Tree; but who can tell us how?   
The lowly worm climbs up a winding stair;   
I wake to sleep, and take my waking slow.
Great Nature has another thing to do   
To you and me; so take the lively air,   
And, lovely, learn by going where to go.
This shaking keeps me steady. I should know.   
What falls away is always. And is near.   
I wake to sleep, and take my waking slow.   
I learn by going where I have to go.
~Theodore Roetke “TheWaking”

 

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In my rush to get from there to here
I missed some things.  The solitary song
of the chickadee; the play of winter light
on kitchen walls; the smell of fresh-raked leaves;
the summer days of childhood, stretched slow
from dawn to dusk, no need to know the date
or time, only the sound of a silver swung bell
to call me in for supper.

Could I re-learn to navigate by phases
of the moon, the ebb and flow of tides,
the rhodies budding out today before
the fall’s first snow?  Could I re-learn
to take my waking slow?
~Ted McMahon, M.D. “Slow Season”

 

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eveningrun

I took an unscheduled landing while wheelbarrowing hay to our horses in the field yesterday morning.

In my rush to get from there to here I missed some things.

I stumbled on uneven ground and fell hard, badly injuring my elbow.  Finishing chores afterward was a challenge and a necessity, wrapping my broken wing up tight in my jacket, doing what was needed before my husband came home to take me to the ER where good people who know me took great care of me.

Of those so close beside me, which are you?   
God bless the Ground!   I shall walk softly there,   
And learn by going where I have to go.

Even though no bones were broken, it was dislocated, so my elbow (and I) needed to be put back together.  The miracle of “conscious sedation” IV medication let my body “think” I was awake – I was surrounded by a swirling round of voices telling me to take deep breaths and constantly reassuring me–while the ER doctor and nurse put traction on my arm and shoulder, then twisting and turning my elbow back into proper position with a “clunk”.  I was blissfully unaware of the tugging and torque, paying attention only to the swirling sounds in my head, then waking slow to find my arm splinted and wrapped from mid-humerus to fingers — all fixed but now typing is also slow.

This shaking keeps me steady. I should know.   
What falls away is always. And is near.   
I’m walking more carefully now, paying attention to exactly where my feet land and what is around me.
The ground is near yet still can be a hard and abrupt landing;
I celebrate the good clinicians who put broken people back together again.
Great Nature has another thing to do   
To you and me; so take the lively air,   
And, lovely, learn by going where to go.
tammingasunset

 

 

Dusted

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“Bees do have a smell, you know,
and if they don’t they should,
for their feet are dusted with spices from a million flowers.”

― Ray Bradbury, Dandelion Wine

 

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I admire the honey bee as pollinator and pollen gatherer simultaneously, facilitating new fruit from the blossom as well as taking away that which will become sweet honey tasting of the spicy essence of the flower touched.

As a physician, I can only hope to be as transformative in the work I do every day.  I carry with me tens of thousands of patients I’ve seen over thirty five years of medical practice.  There is no way I can touch another human being without keeping some small part of them with me – perhaps a memory of an open wound or the residual scar it left behind, a word of sorrow or gratitude, a grimace, a tear or a smile.

Each patient is a flower visited, some still in bud, some in full bloom, some seed pods ready to burst, some spent and wilting and ready to fall away.  Each patient carries a spicy vitality, even in their illness and dying, that is unforgettable and still clings to me. Each patient changes me, the doctor, readying me for the next patient by teaching me a gentler approach, a clearer explanation, a slower leave-taking.  Each patient becomes part of my story, adding to my skill as a healer, and is never to be forgotten.

It has been my privilege to be thoroughly dusted by those I’ve loved and cared for.  I want to carry that on to create something wonderful that reflects the spice of living.

Nothing could smell or taste as sweet.

 

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Music Against the Hard Edges

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In all the woods that day I was
the only living thing
fretful, exhausted, or unsure.
Giant fir and spruce and cedar trees
that had stood their ground
three hundred years
stretched in sunlight calmly
unimpressed by whatever
it was that held me
hunched and tense above the stream,
biting my nails, calculating all
my impossibilities.
Nor did the water pause
to reflect or enter into
my considerations.
It found its way
over and around a crowd
of rocks in easy flourishes,
in laughing evasions and
shifts in direction.
Nothing could slow it down for long.
It even made a little song
out of all the things
that got in its way,
a music against the hard edges
of whatever might interrupt its going.
~John Brehm “Passage”

 

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It may be that when we no longer know what to do
we have come to our real work,

and that when we no longer know which way to go
we have come to our real journey.

The mind that is not baffled is not employed.

The impeded stream is the one that sings.
~Wendell Berry “The Real Work”

 

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Who among us knows with certainty each morning
what we are meant to do that day
or where we are to go?
Or do we make our best guess by
putting one foot ahead of the other
until the day is done and it is time to rest.

For me, I wake baffled each day
that I am allowed
to eavesdrop on heartbeats,
touch tender bellies,
sew up broken skin,
listen to tearful stories
of those no longer wish to live
and those who never want to let go of life.

I wake humbled with commitment
to keep going even when too tired,
to offer care even when rejected.
to keep trying even if impeded.

It is only then I learn that
daily obstacles slow
but cannot stop
the offer of help,
the gift of caring,
the flow of time given freely
which overflows its banks with
uncertain certainty:
my real work and journey
through life.

May I wade in deep~
listening~
ready to raise my voice
for those who hurt
and sing along.

 

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