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.

Only Human

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photo by Nate Gibson

                                                                                                                               above photo by Nate Gibson

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They work with herbs
and penicillin.
They work with gentleness
and the scalpel.
They dig out the cancer,
close an incision
and say a prayer
to the poverty of the skin.
They are not Gods
though they would like to be;
they are only human
trying to fix up a human.
Many humans die.
They die like the tender,
palpitating berries
in November.
But all along the doctors remember:
First do no harm.
They would kiss if it would heal.
It would not heal.

If the doctors cure
then the sun sees it.
If the doctors kill
then the earth hides it.
The doctors should fear arrogance
more than cardiac arrest.
If they are too proud,
and some are,
then they leave home on horseback
but God returns them on foot.
~Anne Sexton “Doctors”

 

Decades ago, essayist, journalist and storyteller E.B. White advised, “Be obscure clearly.”

As a physician, 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.  There is much that is still 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, hardly pristine and clear.

Let’s face the lack of facts of the plethora of shifting, changing facts.  Our conceit about our clinical work is ready to unseat us and plunk us in the dust even on the best of days when everything goes well.  We hope our patients communicate their concerns clearly and comprehensively, 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, advertised by our training as so solid and reliable,  is quicksand much of the time even though our patients trust we are giving them advice based on a foundation of truth learned over years of education and experience.   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.

Over thirty years of doctoring in the midst of the mystery of medicine — learning, unlearning, listening, discerning, explaining, guessing, hoping,  along with constant 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 will be a thing of the past.  The risk and cost of redundant procedures can be avoided.  The patient shares responsibility for maintenance of their medical records and assists the diagnostic process by providing online symptom and outcomes 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.   Lives depend on it.
And maybe we can stay on the horse and out of the dirt a little while longer.

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The World is Flux

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The world
is flux, and light becomes what it touches,
becomes water, lilies on water,
above and below water,
becomes lilac and mauve and yellow…

Doctor, if only you could see
how heaven pulls earth into its arms
and how infinitely the heart expands
to claim this world, blue vapor without end.
~Lisel Mueller from “Monet Refuses the Operation”

It is all about the light
when it fluxes and flexes around us,
transforming us, making us something more
than how we started.

If I could only see this in each person,
how light and water transfigures the rankest weed
and the deepest shadows,
if only my heart could expand
as does the heart of God
when He claims us as His own…
then I could truly see,
how heaven pulls earth into its arms,
blue vapor without end.

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A Light From Within

window2People are like stained-glass windows.  They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.
~ Elisabeth Kübler-Ross

In my work I tend to meet people in their dark times.   It is rare for a patient to come to clinic because all is well.  They come because they are struggling to keep going, are running out of fuel, too blown about by the storms of life.

It is my responsibility to search out the light hidden dim within, to assist my patient to fight back the darkness from their inner resources and offer what little I have to stoke and feed the light from the outside.

I offer a sanctuary from the storm; in return I am bathed in their glow.

 

Cat-Like Observation

photo by Nate Gibson
photo by Nate Gibson

Even doctors must become patients eventually, and often challenging patients at that.  We know enough to be dangerous but not enough to be in charge.  We want to question everything but try not to.  We can tend to be catastrophic thinkers because that is how we are trained to be, but fear being alarmists.  We want our care providers to actually like us, when we know they inwardly cringe knowing they are dealing with another physician.  We wouldn’t want to take care of us either.

Due to intermittent changes in vision in one eye, I have recently been getting some practice at trying to be a model patient.  Unfortunately, I have become an ‘interesting’ patient, something no patient really wants to be.  That means the symptoms are not classic, the diagnostic tests not straight forward, the exam findings not clear cut, the differential diagnosis list very long.   It also usually means a visit to a tertiary care center for a visit with a sub-subspecialist to try to pick the brain of one of the handful of living physicians who thoroughly understands one aspect of complex human physiology and anatomy.  As a primary care physician who always sees an entire forest when I approach a patient, it is a unique experience to watch a colleague at work who truly concentrates on understanding one leaf on one tree.

A public academic training institution’s subspecialty care outpatient clinic is a fascinating place to spend a few hours.  The waiting room was packed to capacity with people from all walks of life sharing our afternoon together because of a shared concern about one small but crucial part of our bodies — our retinas.  We were all told the average time spent in clinic could be three hours or more and we all knew it was worth the wait so didn’t mind a bit.   Despite the long wait, not one of us would have thought to object when a couple of sheriff deputies accompanying a shackled county jail inmate dressed in his orange jumpsuit were escorted right into an exam room, rather than taking the only empty seats in the waiting room next to several elderly ladies.   We figured he was more than welcome to jump to the head of the line.

Finally my turn came to be seen first by a technician, and then a resident physician, then more testing with more technicians, and finally by the subspecialist attending physician himself.  I appreciated his gracious greeting acknowledging me as a colleague, but also his unhesitating willingness to be my doctor so I could be his patient.  His assessment after his exam  and review of everything that had been done:  there was no clear cause for my symptoms,  so my diagnosis would carry an “undifferentiated” label rather than the currently less preferred “idiopathic” label.   In other words, he didn’t know for sure what was up with my retina and as an expert he didn’t like to admit that, but there it was.

He then smiled and said “so for now we’ll treat you with MICCO.”

MICCO?  I knew there are many new unique pharmaceutical names that I have not been able to keep up with, but this was a brand new one to me that I figured only a sub-subspecialist would know about and be able to prescribe.

So he explained: Masterful Inactivity Coupled with Cat-like Observation.

In other words, do nothing for the moment but keep a close eye on it and be ready to pounce the minute something changes. Watchful waiting.

I am relieved to only be under watchful surveillance for now even though my diagnosis, its etiology and prognosis is unclear.  I realize it is a treatment strategy I need to use more in my own clinical practice.    It helps solidify that doctor/patient partnership, especially when the patient is a doctor;  I am content to do nothing but watch for now,  knowing I’m being watched.

It was an afternoon well spent in the sub-subspecialty world, as I come away with a commonsense piece of advice very appropriate for some patients in my own primary care practice:

Right now it might appear I’m doing nothing, but doing nothing makes the most sense and is the least risky option.  I’m keeping my unblinking eye on you, ready to spring into action if warranted.

Treatment plan: MICCO prn

photo by Nate Gibson
photo by Nate Gibson
photo by Nate Gibson
photo by Nate Gibson
photo by Nate Gibson
photo by Nate Gibson

Open for Business

photo by Josh Scholten
photo by Josh Scholten

Astonishing material and revelation appear in our lives all the time. Let it be. Unto us, so much is given. We just have to be open for business.
~Anne Lamott from Help Thanks Wow: Three Essential Prayers

I have the privilege to work in a profession where astonishment and revelation awaits me behind each exam room door.

In a typical clinic day, I open that door 36 times, close it behind me and settle in for the ten or fifteen minutes I’m allocated per patient.  I need to peel through the layers of a person quickly to find the core of truth about who they are and why they’ve come to me.

Sometimes what I’m looking for is right on the surface: in their tears, in their pain, in their fear.  Most of the time, it is buried deep and I need to wade through the rashes and sore throats and coughs and headaches to find it.

Once in awhile, I can actually do something tangible to help right then and there — sew up a cut, lance a boil, splint a fracture, restore hearing by removing a plug of wax from an ear canal.

Often I find myself giving permission to a patient to be sick — to take time to renew, rest and trust their bodies to know what is best for a time.

Sometimes, I am the coach pushing them to stop living sick — to stop hiding from life’s challenges, to stretch even when it hurts, to get out of bed even when not rested, to quit giving in to symptoms that can be overcome rather than overwhelming.

Always I’m looking for an opening to say something a patient may think about after they leave my clinic — how they can make better choices, how they can be bolder and braver in their self care, how they can intervene in their own lives to prevent illness, how every day is a thread in the larger tapestry of their lifespan.

Each morning I rise early to get work done before I actually arrive at work,  trying to avoid feeling unprepared and inadequate to the volume of tasks heaped upon the day.   I know I may be stretched beyond my capacity, challenged by the unfamiliar and stressed by obstacles thrown in my way.  It is always tempting to go back to bed and hide.

Instead, I go to work as those doors need to be opened and the layers peeled away.  I understand the worry, the fear and the pain because I have lived it too.   I am learning how to let it be, even if it feels miserable.  It is a gift perhaps I can share.

No matter what waits behind the exam room door,  it will be astonishing to me.

I’m grateful to be open for business.  The Doctor is In.

photo by Josh Scholten
photo by Josh Scholten

A Mess of Stars

photo by Josh Scholten

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.

….A shepherd on a hilltop who looks at a mess of stars and thinks, ‘There’s a hunter, a plow, a fish,’ is making mental connections that have as much real force in the universe as the very fires in those stars themselves.
~Annie Dillard

I can feel overwhelmed by the amount of “noticing” I need to do in the course of my work every day.  Each patient 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 sometimes offered by another human being.   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 and offering them the gift of being noticed.  It is distinctly a form of praise: they are the universe for a few moments and I’m grateful to be part of it.

Being conscious to what and who is around me at all times is simultaneously exhilarating and exhausting.  I must reduce the expanse of creation to fit my limited synapses, so I can take it all in without exploding with the overload, to make sense of the “mess” around me and within me.

Noticing is only the beginning.  It concludes with praise and gratitude.