An Audience of Terminal Patients

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Write as if you were dying. At the same time, assume you write for an audience consisting solely of terminal patients. That is, after all, the case.
~Annie Dillard from “Write Till You Drop”

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You’re going to feel like hell if you wake up someday and you never wrote the stuff that is tugging on the sleeves of your heart: your stories, memories, visions, and songs–your truth, your version of things–in your own voice. That’s really all you have to offer us, and that’s also why you were born.

~Anne Lamott in a recent TED Talk

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I began to write after September 11, 2001 because that day it became obvious to me I was dying, albeit more slowly than the thousands who vanished that day in fire and ash, their voices obliterated with their bodies.   So, nearly each day since, while I still have voice and a new dawn to greet, I speak through my fingers and my camera lens to others dying around me.

My good friend, Sara, who I’ve known and loved half my life, is fighting for her life in an all day cancer surgery today, having fought a chronic disease and a totally different cancer once before and won.  She knows well the hard cost of winning even when the odds aren’t good,  yet still has a courage in her to fight once again.

That will to fight is heavy on my mind today.

We are, after all, terminal patients, some more imminent than others, some of us more prepared to move on, as if our readiness had anything to do with the timing.

Each day I too get a little closer, so I write and share photos of my world in order to hang on awhile longer.  Each day I must detach just a little bit, leaving a small trace of my voice and myself behind.  Eventually, through unmerited grace, so much of me will be left on the page there won’t be anything or anyone left to do the typing.

There is no moment or picture or word to waste.

 

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All Things Frail and Imperiled

 

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Here, I place
a blue glazed cup
where the wood
is slightly whitened.
Here, I lay down
two bright spoons,
our breakfast saucers, napkins
white and smooth as milk.

I am stirring at the sink,
I am stirring
the amount of dew
you can gather in two hands,
folding it into the fragile
quiet of the house.
Before the eggs,
before the coffee
heaving like a warm cat,
I step out to the feeder—
one foot, then the other,
alive on wet blades.
Air lifts my gown—I might fly—

This thistle seed I pour
is for the tiny birds.
This ritual,
for all things frail
and imperiled.
Wings surround me, frothing
the air. I am struck
by what becomes holy.

A woman
who lost her teenage child
to an illness without mercy,
said that at the end, her daughter
sat up in her hospital bed
and asked:

What should I do?
What should I do?

Into a white enamel bath
I lower four brown eggs.
You fill the door frame,
warm and rumpled, kiss
the crown of my head.
I know how the topmost leaves
of dusty trees
feel at the advent
of the monsoon rains.

I carry the woman with the lost child
in my pocket, where she murmurs
her love song without end:
Just this, each day:
Bear yourself up on small wings
to receive what is given.

Feed one another
with such tenderness,
it could almost be an answer.
~Marcia F. Brown “Morning Song”

 

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I am comforted by rituals, as are we all.
The feeding, the cleaning,
the washing, the nurture,
the smoothing of the wrinkled and ruffled,
the sacred time of rest.

It is those small things that get us through the day,
that create holiness in each breath, each moment.

What should I do next? What should I do?

No need to wonder. I am led to what is needed.

 

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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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The Art of Showing Up

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I learned from my mother how to love
the living, to have plenty of vases on hand
in case you have to rush to the hospital
with peonies cut from the lawn, black ants
still stuck to the buds. I learned to save jars
large enough to hold fruit salad for a whole
grieving household, to cube home-canned pears
and peaches, to slice through maroon grape skins
and flick out the sexual seeds with a knife point.
I learned to attend viewings even if I didn’t know
the deceased, to press the moist hands
of the living, to look in their eyes and offer
sympathy, as though I understood loss even then.
I learned that whatever we say means nothing,
what anyone will remember is that we came.
I learned to believe I had the power to ease
awful pains materially like an angel.
Like a doctor, I learned to create
from another’s suffering my own usefulness, and once
you know how to do this, you can never refuse.
To every house you enter, you must offer
healing: a chocolate cake you baked yourself,
the blessing of your voice, your chaste touch.
~Julie Kasdorf– “What I Learned from my Mother”

 

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Usually a mom knows best about these things — how to love others when and how they need it.  Showing up with food you’ve made yourself is always a good thing but it is the showing up part that is the real food;  bringing along a cake is simply the icing.

This is a good reminder that as a doctor, my usefulness is completely dependent on others’ suffering. No illness, no misery, no symptoms and I’m out of a job.

If only.
What a world that would be.
And then I can still be a mom even if there is no more doctor work:

….if I’d known it could help, I’d have baked a cake…

 

 

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The Mere Exception

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We should always endeavour to wonder at the permanent thing, not at the mere exception. We should be startled by the sun, and not by the eclipse. We should wonder less at the earthquake, and wonder more about the earth.
~ G.K. Chesterton

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As a physician, I’m trained to notice the exceptions – the human body equivalent of
an eclipse or an earthquake,
a wildfire or drought,
a hurricane or flood,
or a simple pothole.

Ordinarily I’m not particularly attentive to everything that is going well with the human body, instead concentrating on what is aberrant, out of control or could be made better.

This is unfortunate; there is much beauty and amazing design to behold in every person I meet, especially those with chronic illness who feel nothing is as it should be and feel despair and frustration at how their mind or body is aging, failing and faltering.

To counter this tendency to just find what’s wrong and needs fixing, I’ve learned over the years to talk out loud as I do physical assessments:
you have no concerning skin lesions,
your eardrums look just as they should,
your eyes react normally,
your tonsils look fine,
your thyroid feels smooth,
your lymph nodes are tiny,
your lungs are clear,
your heart sounds are perfect,
your belly exam is reassuring,
your reflexes are symmetrical,
your emotional response to this stress and your tears are completely understandable.

I also write messages meant to reassure:
your labs are in a typical range
or are getting better
or at least maintaining,
your xray shows no concerns,
or isn’t getting worse,
those medication side effects are to be expected and could go away.

I acknowledge what is working well before attempting to intervene in what is not.

I’m not sure how much difference it makes to my patient.
But it makes a difference to me to wonder first at who this whole patient is before I focus in on what is broken and what is causing such dis-ease.

I just might be astonished.

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Let’s Put the Family Back in Family Medicine

Portrait by Norman Rockwell
Portrait by Norman Rockwell
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portrait by Norman Rockwell

An open letter to the American Board of Family Medicine (ABFM):

Yesterday I chose to sit for my sixth (and I hope final) Family Practice Board ten year Maintenance of Certification (MOC) examination, having now practiced as a Board Certified Family Physician for the past 34 years and intending to work a few more years. I want to share my experience taking this examination your organization prepares, promotes, and uses at high cost to determine which physicians meet the standards of Family Medicine, as stated on your website:

Family medicine is the medical specialty that provides continuing, comprehensive health care for the individual and family. It is a specialty in breadth that integrates the biological, clinical and behavioral sciences. The scope of family medicine encompasses all ages, both sexes, each organ system, and every disease entity. When you or a family member needs health care or medical treatment, you want a highly qualified doctor dedicated to providing outstanding care. When you choose a doctor who is board-certified, you can be confident he or she meets nationally recognized standards for education, knowledge, experience, and skills to provide high quality care in a specific medical specialty.

After my experience today, I am deeply disappointed in your vision of what a “highly qualified” Board Certified Family Physician needs to demonstrate on a MOC examination in order to meet “nationally recognized standards”.

As a medical student educated at the University of Washington during the early years of a newly organized family medicine specialty in the late seventies, I was inspired by the physicians who were our teachers and mentors in the art and science of caring not just for the individual, but their family system as well.  I then had the privilege of family practice residency training at one of the most progressive health maintenance organizations in the country (Group Health Cooperative in Seattle) where my teachers were not only excellent family physicians who were deeply involved with training residents, but actively involved in caring for their own patients as well. In addition, one of my best teachers at Group Health was a full time non-physician behavioral health specialist who taught us how to understand a patient’s experience of their illness and how an excellent family doc makes a difference in a patient’s sense of well-being.

As a result of those role models in my training and education, I have devoted my four decade career to family medicine in a variety of primary care roles — as a physician with a full spectrum practice in the inner city, as a director of a family planning clinic as well as a community health center for indigent and homeless patients, as an occupational health clinician for industry, as a community inpatient behavioral health and “detox” doctor for our local hospital, as a forensic examiner for hundreds of child sexual abuse evaluations, as a college health physician, and as an administrator. I have had the privilege to work with an immense variety of patients in diverse clinical settings, and only family medicine specialty training could have prepared me for that.

I believe in my specialty and the incredible versatility it offers to the physicians who choose it and to the patients who benefit from care by clinicians who are trained to work with the whole person, not just one aspect of their health.
I believe in those who practice a “womb to tomb” approach in providing continuity of care for an individual throughout their life cycle.
I believe in the opportunities within my specialty for some clinicians to concentrate only on certain aspects of patient care (geriatric care, palliative/hospice care, emergency medicine, hospitalist care, adolescent medicine, sports medicine, addiction care, behavioral health, etc)

I no longer believe, based on the contents of the MOC examination, the American Board of Family Medicine is living up to its commitment to its paying physician constituents. Board Certification is no longer an “option” for us but an economic necessity for our ongoing professional employment, credentialing and privileging.

First, I knew my preparation for this exam would need to be more rigorous than for previous exams as my current practice exclusively manages patients’ behavioral health issues given the current lack of psychiatric consultant availability or affordability.  As family physicians often do, we must step up and become the specialist our patients need when no other specialist is available.  I no longer see the full spectrum of life cycle medical issues so the many hours of review I did for the exam was necessary, extensive and time-consuming, even though I will not ever practice full spectrum family medicine again.

Second, the experience of taking the examination at a regional “testing center”  goes beyond standard airport security humiliation: having my eye glasses inspected in case they contained a camera, my wedding ring looked at, my pockets turned inside out, my sleeves pulled up, my ankles and socks uncovered,  being “wanded” for metal hidden on my body,  my wrist watch locked up with my purse and cell phone — this happened not just once but after every break, even to go to the bathroom.

Third, the exam itself in no way measured the diversity of skills required of an excellent family physician.   Over three hundred multiple choice questions each providing a few data and clinical points about a particular patient and based on that limited information, the test taker is asked to choose the “best” evidence-based treatment option or “most likely” diagnosis.  Absent are the nuances of patient demeanor in the exam room or how they respond on history-taking, the subtleties of a hands-on physical assessment. No information was provided about whether this particular patient has a family involved in their care, or what finances they have to afford the “best” treatment option when insurance won’t cover, or their willingness to comply with what is recommended.  A phone app could easily answer these exam questions with a search that takes less than twenty seconds yet our cell phones were taken away and locked up.  Your test content implies a family physician has to know all the details, the numbers, and the drug interactions committed to memory without the benefit of the technology tools we, along with many of our patients, use every day.

An excellent family physician can easily look up the “guidelines” and the “evidence based treatment” for a medical diagnosis, but beyond that must know how best to work with a particular patient given all the variables in their life impacting their health and well being.

Less than 5% of the exam questions dealt with any behavioral health issues when mental health concerns can be more than 50% of the issues brought to us in any given appointment.  There was minimal mention about the dynamics of family support, or insurance/financial stressors or relationship conflicts, or the many social justice issues impacting patient health.  There were no questions involving LGBTQ patients.  There were few questions about the impact of the current epidemic of substance abuse and addiction contributing to our patients’ premature deaths.  There was nothing that dealt with how to encourage and inspire patient compliance with our recommendations. There were no questions dealing with ethical decision making, or how to keep the computer screen from coming between the clinician and the patient, or how to maintain humanity in medical practice.

Fourth, I left that examination feeling very discouraged that the (all younger) family physicians who sat with me in that testing center are facing future years of this kind of superficial yet onerous assessment of their skills.  They are likely reluctant to “rock the boat” in questioning how our specialty has devolved to this but I am not.  I want to see this improve within my professional lifetime.

If the every ten year high stakes MOC examination were a surgery, an imaging study or a new medication, it would never pass muster for the ABFM standard of “best practice” and “evidence-based”.   That seems ironic for an exam that is designed specifically to measure physicians’ abilities to memorize and recall guidelines, best practices and what is recommended and what is not in certain clinical situations. Over my 30+ years of family medicine, many generally accepted and “evidence-based” medical practices have now been found to be ineffective, or at worse, harmful.  So we stop doing them and stop recommending them.

Yet somehow the high stakes MOC exam survives without evidence of benefit and one could argue causes significant harm including the immense cost in money, time and aggravation. I am not advocating for ceasing MOC, but want to see ABFM move on from the once a decade exam to a more frequent open book assessment — help us physicians learn more effectively and more eagerly.

I have worked at a University for three decades and understand the style of learning that results in information “sticking” versus that which is memorized and quickly forgotten, especially when it is not used on a regular basis. As Dr. Robert Centor has cogently commented about the MOC process, there is a difference between “formative” assessment of knowledge which is an ongoing monitoring of knowledge acquisition reflecting a learner’s strengths and weaknesses versus a “summative” assessment which is the high stakes end of the semester (or decade) examination.   We want our physicians to be enthusiastic ongoing learners with incentive to keep up on new medical innovation and knowledge.  To encourage that we need to launch frequent mandatory open book assessments of knowledge before more and more physicians drop out of the MOC process (and their practices) altogether.

I’m asking the ABFM and its Board members to not be tone deaf to the voices of physicians who are telling you “the emperor has no clothes” when we all have tried for decades to be good Board Certified citizens pretending that all is right and well with the process we are subjected to.

I’m also asking the ABFM and its Board members to reexamine the cost and need for security measures in a strip mall testing center setting which is the equivalent of MRI scanning 10,000 patients to find the one cancer  — this would never be an acceptable option on one of your exam questions.  Treat us as the professionals we are.

I know why I became a family physician over thirty years ago and it wasn’t to treat patients as demographic data points whose health parameters and decisions must meet “evidence-based outcome measures” so health care entities can be fully reimbursed for the work we do with them.

And so I ask you, on behalf of family physicians who don’t speak up, and on behalf of our patients:

~with your organization leading the way, let’s put the “family” back in family medicine.

~let’s put the doctor/patient relationship back in the forefront of the care we provide for people.

~and let’s stop meaningless multiple choice high stakes MOC examinations in strip mall testing centers and look at what really matters in Maintenance of Certification of family physicians.

Sincerely,

Emily Gibson, M.D.

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portrait by Norman Rockwell
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portrait by Norman Rockwell

 

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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