Foggy and Fine Days Within Me

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And so you have a life that you are living only now,
now and now and now,
gone before you can speak of it,
and you must be thankful for living day by day,
moment by moment …
a life in the breath and pulse and living light of the present…

~Wendell Berry from Hannah Coulter

 

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~Lustravit lampade terras~
(He has illumined the world with a lamp)
The weather and my mood have little connection.
I have my foggy and my fine days within me;
my prosperity or misfortune has little to do with the matter.
– Blaise Pascal from “Miscellaneous Writings”

 

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photo by Nate Gibson

 

Is my gloom, after all,
Shade of His hand,
outstretched caressingly?

~Francis Thompson from “The Hound of Heaven”

 

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My days are filled with anxious and sad patients, one after another after another.  They sit at the edge of their seat, struggling to hold back the flood from brimming eyes, fingers gripping the arms of the chair.   Each moment, each breath, each heart beat overwhelmed by questions:  will there be another breath?  must there be another breath?   Must life go on like this in fear of what the next moment will bring?

The only thing more frightening than the unknown is the knowledge that the next moment will be just like the last or perhaps worse.  There is no recognition of a moment just passed that can never be retrieved and relived.   There is only fear of the next and the next so that the now and now and now is lost forever.

Worry and sorrow and angst are contagious as the flu.
I mask up and wash my hands of it throughout the day.
I wish we could be vaccinated to protect us all from these unnamed fears.

I want to say to them and myself:
Stop this moment in time. Stop and stop and stop.
Stop expecting someone or some thing must fix this feeling.
Stop wanting to be numb to all discomfort.
Stop resenting the gift of each breath.
Just stop.
Instead, simply be.

I want to say:
this moment, foggy or fine, is yours alone,
this moment of weeping and sharing
and breath and pulse and light.
Shout for joy in it.
Celebrate it.
Be thankful for tears that can flow over grateful lips
and stop holding them back.

Stop me before I write,
out of my own anxiety,
yet another prescription
you don’t really need.

Just be–
and be blessed–
in the now and now and now.

 

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A Deep Fear of Emptiness

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Wheels of baled hay bask in October sun:
Gold circles strewn across the sloping field,
They seem arranged as if each one
Has found its place; together they appeal
To some glimpsed order in my mind
Preceding my chance pausing here —
A randomness that also seems designed.
Gold circles strewn across the sloping field
Evoke a silence deep as my deep fear
Of emptiness; I feel the scene requires
A listener who can respond with words, yet who
Prolongs the silence that I still desire,
Relieved as clacking crows come flashing through,
Whose blackness shows chance radiance of fire.
Yet stillness in the field remains for everyone:
Wheels of baled hay bask in October sun.
~Robert Pack “Baled Hay” from Rounding it Out: A Cycle of Sonnetelles (1999).

 

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Each day I am called to see and listen,
to open fully to all that is around me.
From the simple stillness of the fields
surrounding our farm,
to the weeping of those who sit with me
day after day
in their deep fear of emptiness,
their struggle with whether to try to live
or give up and die.

Their deep fear of emptiness renders me silent;
I struggle to respond with words
that might offer up a healing balm
assuring them even in the darkest time
hope lies waiting, wrapped and baled,
radiant as fire,
ready to spill out fragrant,
to bear us silently to a new morning,
to a stillness borne of grace.

 

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Doc Season

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It may not be rabbit season or duck season but it definitely seems to be doc season, especially as the next version of the American Health Care Act is unveiled today. This (and the Affordable Care Act which preceded it) is not about patients — it is about how to keep doctors and the health care industry under reasonable cost control and maintain some semblance of quality service.

Physicians are lined up squarely in the gun sights of the media, government agencies and legislators, as well as our employers and coworkers, not to mention our own professional organizations, our Board Certifying bodies, and our dissatisfied patients, all happily acquiring hunting licenses in order to trade off taking aim. It’s not enough any more to wear a bullet proof white coat. It’s driving doctors to hang up their stethoscope much earlier than they expected just to get out of the line of fire. Depending on who is expressing an opinion, doctors are seen as overcompensated, demanding, whiny, too uncommitted, too over-committed, uncaring, egotistical, close-minded, inflexible, and especially, and most annoyingly – perpetually late.

One of the most frequent complaints expressed about doctors is their lack of sensitivity to the demands of their patients’ schedule. Doctors do run late and patients wait. And wait. And wait some more. Patients get angry while waiting and this is reflected in patient (dis)satisfaction surveys which are becoming one of the tools the industry uses to judge the quality of a physician’s work and character as well as their salary compensation.  It is considered basic Customer Service 101.

I admit I’m one of those late doctors. I don’t share the reasons why I’m late with my patients as I enter the exam room apologizing for my tardiness. Taking time to explain takes time away from the task at hand: taking care of the person sitting or lying in front of me. At that moment, they are the most important person in the world to me. More important than the six waiting to see me, more important than the several dozen emails and calls waiting to be returned, more important than the fact I missed lunch or need to go to the bathroom, more important even than the text message from my daughter from school or the worry I carry about my dying mother.

I’m a salaried doctor, just like more and more of my primary care colleagues these days, providing more patient care with fewer resources. I don’t earn more by seeing more patients. There is a work load that I’m expected to carry and my day doesn’t end until that work is done. Some days are typically a four patient an hour schedule, but most days my colleagues and I must work in extra patients triaged to us by careful nurse screeners, and there are only so many minutes that can be squeezed out of an hour so patients end up feeling the pinch. I really want to try to go over the list of concerns some patients bring in so they don’t need to return to clinic for another appointment, and I really do try to deal with the inevitable “oh, by the way” question when my hand is on the door knob. Anytime that happens, I run later in my schedule, but I see it as my mission to provide essential caring for the “most important person in the world” at that moment.

The patient who is angry about waiting for me to arrive in the exam room can’t know that I’m late because the previous patient just found out that her upset stomach was caused by an unplanned and unwanted pregnancy. Perhaps they might be more understanding if they knew that an earlier patient came in with severe self injury so deep it required repair. Or the woman with a week of cough and new rib pain with a deep breath that could be a simple viral infection is showing signs of a pulmonary embolism caused by oral contraceptives. Or the man with blood on the toilet paper after a bowel movement finding out he has sexually transmitted anal warts when he’s never disclosed he has sex with other men, or the woman with bloating whose examination reveals an ominous ovarian mass, or finding incidental needle tracks on arms during an evaluation for itchiness, which leads to a suspicion of undiagnosed chronic hepatitis.

Doctors running late are not being inconsiderate, selfish or insensitive to their patients’ needs. Quite the opposite. We strive to make our patients feel respected, listened to and cared for. Most days it is a challenge to do that well and stay on time. For those who say we are being greedy, so we need to see fewer patients, I respond that health care reform and salaried employment demands we see more patients in less time, not fewer patients in more time. The waiting will only get longer as more doctors hang up their stethoscopes rather than become a target of anger and resentment as every day becomes “doctor season.”

Patients need to bring a book or catch up on correspondence,  bring knitting, schedule for the first appointment of the day. They also need to bring along a dose of charitable grace when they see how crowded the waiting room is. It might help to know you are not alone in your worry and misery.

But your doctor and health care team is very alone, scrambling to do the very best healing they can in the time available.

I’m not hanging my stethoscope up anytime soon though some days I’m so weary by the end, I’m not sure my brain between the ear tips is still functioning. I don’t wear a bullet proof white coat since I refuse to be defensive. If it really is doctor season, I’ll just continue on apologizing as I walk into each exam room, my focus directed to the needs of the “most important person in the whole world.”

And that human being deserves every minute I can give them.

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chelanshadows

A Z-Pack Pas De Deux

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I’ve been really miserable for three days and need that 5 day antibiotic to get better faster.

Ninety eight percent of the time these symptoms are due to a viral infection and will resolve without antibiotics.

But I can’t breathe and I can’t sleep.

You can use salt water rinses and a few days of decongestant nose spray to ease the congestion.

But my face feels like there is a blown up balloon inside.

Try applying a warm towel to your face.

And I’m feverish and having sweats at night.

Your temp is 99.2. You can use ibuprofen or acetominophen to help the feverish feeling.

But my snot is green.

That’s not unusual with viral upper respiratory infections.

And my teeth are starting to hurt and my ears are popping.

Let me know if that is not resolving in a week or so.

But I’m starting to cough.

Your lungs are clear so breathe steam, push fluids and prop up with an extra pillow.

But sometimes I cough to the point of gagging. Isn’t whooping cough going around?

Your illness doesn’t fit the timeline for pertussis.  You can consider using an over the counter cough suppressant.

But I always end up needing antibiotics. This is like my regular sinus infection thing.

There’s plenty of evidence they can do more harm than good.  They really aren’t indicated at this point in your illness and could have nasty side effects.

But I always get better faster with antibiotics. Doctors always give me antibiotics.

Studies show that two weeks later there is no significant difference in symptoms between those treated with antibiotics and those who did self-care without them.

But I have a really hard week coming up and I won’t be able to rest.

This could be your body’s way of saying that you need to evaluate your priorities.

But I just waited an hour to see you.

I really am sorry about the wait; we’re seeing a lot of sick people with this viral thing going around.

But I paid a $20 co-pay today for this visit.

We’re very appreciative of you paying promptly on the day of service.

But I can go down the street to the walk in clinic and for $130 they will write me an antibiotic prescription without making me feel guilty for asking.

I wouldn’t recommend taking unnecessary medication that can lead to bacterial resistance, side effects and allergic reactions. I truly believe you can be spared the expense, inconvenience and potential risk of taking something you don’t really need.

So that’s it?  Salt water rinses and wait it out?  That’s all you can offer?

Let me know if your symptoms are unresolved or worsening in the next week or so.

So you spent all that time in school just to tell people they don’t need medicine?

I believe I help people heal themselves and educate them about when they do need medicine and then facilitate appropriate treatment. 

I’m going to go find a real doctor who will listen to me.

A real doctor vows to first do no harm.  I know you want something different than I’m offering you and I wish you the best as you recover.

To Feel the Hem of Heaven

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Your days are short here; this is the last of your springs.
And now in the serenity and quiet of this lovely place,
touch the depths of truth, feel the hem of Heaven.
You will go away with old, good friends.
And don’t forget when you leave why you came.

~Adlai Stevenson, to the Class of ’54 Princeton University

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I was eight years old in June 1963 when the Readers’ Digest arrived in the mail inside its little brown paper wrapper. As usual, I sat down in my favorite overstuffed chair with my skinny legs dangling over the side arm and started at the beginning,  reading the jokes, the short articles and stories on harrowing adventures and rescues, pets that had been lost and found their way home, and then toward the back came to the book excerpt: “The Triumph of Janis Babson” by Lawrence Elliott.

Something about the little girl’s picture at the start of the story captured me right away–she had such friendly eyes with a sunny smile that partially hid buck teeth.  This Canadian child, Janis Babson, was diagnosed with leukemia when she was only ten, and despite all efforts to stop the illness, she died in 1961.  The story was written about her determination to donate her eyes after her death, and her courage facing death was astounding.  Being nearly the same age, I was captivated and petrified at the story, amazed at Janis’ straight forward approach to her death, her family’s incredible support of her wishes, and especially her final moments, when (as I recall 54 years later) Janis looked as if she were beholding some splendor, her smile radiant.

”Is this Heaven?” she asked.   She looked directly at her father and mother and called to them:  “Mommy… Daddy !… come… quick !”

And then she was gone.  I cried buckets of tears, reading and rereading that death scene.  My mom finally had to take the magazine away from me and shooed me outside to go run off my grief.  How could I run and play when Janis no longer could?  It was a devastating realization that a child my age could get sick and die, and that God allowed it to happen.

Yet this story was more than just a tear-jerker for the readers.  Janis’ final wish was granted –those eyes that had seen the angels were donated after her death so that they would help another person see.  Janis  had hoped never to be forgotten.  Amazingly, she influenced thousands of people who read her story to consider and commit to organ donation, most of whom remember her vividly through that book excerpt in Readers’ Digest.  I know I could not sleep the night after I read her story and determined to do something significant with my life, no matter how long or short it was.  Her story influenced my eventual decision to become a physician.  She made me think about death at a very young age as that little girl’s tragic story could have been mine and I was certain I could never have been so brave and so confident in my dying moments.

Janis persevered with a unique sense of purpose and mission for one so young.  As a ten year old, she developed character that some people never develop in a much longer lifetime.  Her faith and her deep respect for the gift she was capable of giving through her death brought hope and light to scores of people who still remember her to this day.

Out of the recesses of my memory, I recalled Janis’ story a few years ago when I learned of a local child who had been diagnosed with a serious cancer.  I could not recall Janis’ name, but in googling “Readers’  Digest girl cancer story”,  by the miracle of the internet I rediscovered her name, the name of the book and a discussion forum that included posts of people who were children in the sixties, like me,  who had been incredibly touched by Janis when they read this same story as a child.  Many were inspired to become health care providers like myself and some became professionals working with organ donation.

Janis and family, may you know the gift you gave so many people through your courage in the midst of suffering, and the resulting hope in the glory of the Lord.  Your days were short here, but you touched the depth of truth and touched the hem of heaven.
~~the angels are coming indeed.

We who have been your old good friends,  because of your story,  have not forgotten how you left us and why you came in the first place.

For excerpts from “The Triumph of Janis Babson”, click here

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Not Choose Not To Be

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Not, I’ll not, carrion comfort, Despair, not feast on thee;
Not untwist — slack they may be — these last strands of man
In me ór, most weary, cry I can no more. I can;
Can something, hope, wish day come, not choose not to be.
But ah, but O thou terrible, why wouldst thou rude on me
Thy wring-world right foot rock? lay a lionlimb against me? scan
With darksome devouring eyes my bruisèd bones? and fan,
O in turns of tempest, me heaped there; me frantic to avoid thee and flee?
   Why? That my chaff might fly; my grain lie, sheer and clear.
Nay in all that toil, that coil, since (seems) I kissed the rod,
Hand rather, my heart lo! lapped strength, stole joy, would laugh, chéer.
Cheer whom though? the hero whose heaven-handling flung me, fóot tród
Me? or me that fought him? O which one? is it each one? That night, that year
Of now done darkness I wretch lay wrestling with (my God!) my God.
~Gerard Manley Hopkins
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I hear the same anguish
from one patient after another:

their struggle with life makes them
frantic to avoid the fight and flee~

they would
commit suicide,
yet not believing
in God
would mean
jumping from
the pain of living
into

…nothing at all…

I thought
feeling nothing
was the
point
of ceasing
to be

still in their unbelief
they do not recognize
the God who wrestles relentless with them,
who heaven-flung them here
for such sacred struggle

Perhaps they can’t imagine
a God
(who created
doubters
sore afraid
of His caring
enough to die)

so no one
is ever now,
nor ever will be,
~nothing.

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Handing the Medical Chart Back to the Patient

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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 was gone 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.

Thirty years into my practice of medicine,  I now spend a significant part of my patient care time in 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.  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, poor eating 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.

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.”   I have never felt more empowered as a healer when I now can share everything I have available, as it becomes available.  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 unrestricted access to the self-knowledge that leads them to a better appreciation for their health and and understanding of their illnesses.

And so I am impacted as well, as it is a privilege to live and work in an age where such a doctor~patient relationship has now become possible.