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.

Clearing the Fog

 

 

 

Tired and hungry, late in the day, impelled
to leave the house and search for what
might lift me back to what I had fallen away from,
I stood by the shore waiting.
I had walked in the silent woods:
the trees withdrew into their secrets.
Dusk was smoothing breadths of silk
over the lake, watery amethyst fading to gray.
Ducks were clustered in sleeping companies
afloat on their element as I was not
on mine.

I turned homeward, unsatisfied.
But after a few steps, I paused, impelled again
to linger, to look North before nightfall-the expanse
of calm, of calming water, last wafts
of rose in the few high clouds.

And was rewarded:
the heron, unseen for weeks, came flying
widewinged toward me, settled
just offshore on his post,
took up his vigil.
                               If you ask
why this cleared a fog from my spirit,
I have no answer.
~Denise Levertov “A Reward” from Evening Train.

 

 

 

~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”

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

Worry and sorrow and angst are more contagious than the flu.
I mask up and wash my hands of it throughout the day.
There should be a vaccination against unnamed fears.

I want to say to my patients and to myself:
Stop now, this moment in time.
Stop and stop and stop.

Stop needing 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
just as rain can clear the fog.
Stop holding them back.

Just be–
be blessed in both the fine and the foggy days–
in the now and now and now.




Why I’m Running Late

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It may not be rabbit season or duck season but it definitely seems to be doctor season.  Physicians are lined up squarely in the gun sights of the media,  government agencies and legislators, our health care industry employers and coworkers, not to mention our own 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 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 overcommitted, uncaring, egotistical, close minded,  inflexible, and especially– 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.

I admit I’m one of those late doctors.  Perpetually 20-30 minutes behind.

I don’t share the reasons why I’m late with my patients as we sit down together in the exam room but I do apologize for my tardiness.  Taking time to explain why takes time away from the task at hand: taking care of the person sitting or lying in front of me.   At that moment, that is the most important person in the world to me.  More important than the six waiting to see me, more important than the dozens of emails, electronic portal messages 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 of concern from my daughter or the worry I have about a ill relative.

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 three patients before them I saw a woman who 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, but is showing potential 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 suspected 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, 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 is very alone, scrambling to do the very best healing he or she can in the time available.

I’m not yet hanging my stethoscope up though some days I’m so weary by the end, I’m not sure my brain between the ear buds 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 for that moment 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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The Doctor’s Waiting Room Vladimir Makovsky 1870

Prescribing Good Medicine

 

A good night sleep, or a ten minute bawl, or a pint of chocolate ice cream, or all three together, is good medicine.
~Ray Bradbury

 

 

 

If there is anything I’ve learned in over 40 years of practicing medicine, it’s that I still must “practice” my art every day.  As much as we physicians emphasize the science of what we do, utilizing “evidence based” decisions, there are still days when a fair amount of educated guessing and a gut feeling is based on past experience, along with my best hunch.  Many patients don’t arrive with classic cook book symptoms that fit the standardized diagnostic and treatment algorithms so the nuances of their stories require interpretation, discernment and flexibility.    I appreciate a surprise once in awhile that makes me look at a patient in a new or unexpected way and teaches me something I didn’t know before.   It keeps me coming back for more, to figure out the mystery and dig a little deeper.

I’ve also learned that not all medicine comes in pills or injections.  This isn’t really news to anyone, but our modern society is determined to seek better living through chemistry, the more expensive and newer the better, whether prescribed or not.  Chemicals have their place, but they also can cause havoc.  It is startling to see medication lists topping a dozen different daily pills.  Some are life-saving.  Many are just plain unnecessary.

How many people sleep without the aid of pill or weed or alcohol?  Fewer and fewer.  Poor sleep is one of the sad consequences of our modern age of too much artificial light, too much entertainment and screen time keeping us up late, and not enough physical work to exhaust our bodies enough to match our frazzled and fatigued brains.

How many of us allow ourselves a good cry when we feel it welling up?  It could be a sentimental moment–a song that brings back bittersweet memories, a commercial that touches just the right chord of feeling and connection.  It may be a moment of frustration and anger when nothing seems to go right.  It could be the pain of physical illness or injury or the stress of emotional turmoil.  Or just maybe there is weeping when everything is absolutely perfect and there cannot be another moment just like it, so it is tough to let it go unchristened by tears of joy.

And without a doubt, the healing qualities of chocolate are unquestioned by this doctor, however it may be consumed.  It can fix most everything that ails a person,  at least for an hour or two.

No, it doesn’t take an M.D. degree to know the best medicine.

Just remember: sleep, weep, reap (chocolate!)

 

Preparing Through Parable: Fertilize…

empressfruit

 

Then he told this parable: “A man had a fig tree growing in his vineyard, and he went to look for fruit on it but did not find any. So he said to the man who took care of the vineyard, ‘For three years now I’ve been coming to look for fruit on this fig tree and haven’t found any. Cut it down! Why should it use up the soil?’

“‘Sir,’ the man replied, ‘leave it alone for one more year, and I’ll dig around it and fertilize it. If it bears fruit next year, fine! If not, then cut it down.’”
Luke 13:6-9

 

horse manure composted garden

 

As a farmer, I spend over an hour a day cleaning my barn, and wheel heavy loads of organic material to a large pile in our barnyard which composts year round.  Piling up all that messy stuff that is no longer needed is crucial to the process: it heats up quickly to the point of steaming, and within months, it becomes rich fertilizer, ready to help the fields to grow grass, or the garden to produce vegetables, or the fragrant blooms in the flower beds.  It becomes something far greater and more productive than what it was to begin with, thanks to transformation of muck to fruit.

That’s largely what I do in clinic as well.

As clinicians, we help our patients “clean up” the parts of their lives they really don’t need, that they can’t manage any longer, that are causing problems with their health, their relationships and obligations.  There isn’t a soul walking this earth who doesn’t struggle in some way with things that take over our lives, whether it is school, work,  computer use, food, gambling, porn, you name it.  For the chemically dependent, it comes in the form of smoke, a powder, a bottle, a syringe or a pill.  There is nothing that has proven more effective than “piling up together” learning what it takes to walk the road to health and healing, “heating up”, so to speak, in an organic process of transformation that is, for lack of any better description, primarily a spiritual treatment process.  When a support group becomes a crucible for the “refiner’s fire”,  it does its best work melting people down to get rid of the impurities before they can be built back up again, stronger than ever.  They become compost, productive, ready to grow others.

This work with a spectrum of individuals of all races, backgrounds and creeds has transformed me.

As Jesus says in Matthew 25: 40–‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’

It’s crucial to fertilize those who otherwise may be cut down.  Only then can they bear fruit.

May my eyes see, my ears hear, my heart understand.  He prepares me with parable.

 

 

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Lost Inside This Soft World

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Everyday
I see or hear
something
that more or less

kills me
with delight,
that leaves me
like a needle

in the haystack
of light.
It was what I was born for — 
to look, to listen,

to lose myself
inside this soft world —
~Mary Oliver from “Mindful”

 

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dawn7253

 

Some days I’m the needle
and other days I’m the pin cushion

Today I may be both,
probing into people’s lives and feelings,
moving beyond their sharp edges
to find the source of their pain.
They don’t realize I wince too,
remembering how it feels.

I choose the softness of the light
that floats close to the ground,
that reaches out with cloudy grasp.

This is what I was born for:
delighted to be lost
and then found.

 

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When Worry is a Terminal Disease

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Considering myself a Dr. Doolittle of sorts, always talking to the animals, I reached out to pet a stray cat sitting quietly outside our barn one evening while doing barn chores.  This is a grayish fluffy cat I see around the barns every few months or so–he doesn’t put in frequent appearances and reminds me of a kitten we raised on this farm a few years back, though his markings are a bit different,  so I know it is not our cat.

We have 6 cats to pet here who claim “us” as their home and family, so there is no lack of fur balls to love.  There are probably that many more who hang out,  now and then,  considering our farm fair game and looking for an occasional free meal.  This cat just seemed to need a reassuring pat at that moment or maybe I needed the reassurance.  Wrong.

I found myself with a cat attached to my wrist by teeth and claws.  It took a bit of an effort to shake him off and he escaped into the night. I then surveyed the damage he inflicted and immediately went to wash my wounds.  They were deep punctures near my wrist joint–not good.  Lucky for me I was up to date on my tetanus booster.

By the next day the wounds were getting inflamed and quite sore.  I know all too well the propensity of cat bites to get badly infected with Pasteurella Multocida, a “bad actor” bacteria that can penetrate deep tissues and bone if not treated with aggressive antibiotics.  After getting 6 opinions from my colleagues at clinic, all of whom stood solemnly shaking their heads at my 12 hour delay in getting medical attention,  I surrendered and called my doctor’s office.  I pleaded for a “no visit” prescription as I was up to my eyeballs in my own patients, and he obliged me.  I picked up the antibiotic prescription during a break, sat in the car ready to swallow the first one and then decided to wait a little longer before starting them, knowing they wallop the gut bacteria and cause pretty nasty side effects.  I wanted to see if my own immune system might just be sufficient.

So the bacterial infection risk was significant and real but I was prepared to deal with it.  For some reason I didn’t really think about the risk of rabies until the middle of the night when all dark and depressing thoughts seem to come real to me.

I don’t know this cat.  I doubt he has an owner and it is highly unlikely he is rabies vaccinated.  My own cats aren’t rabies vaccinated (and neither am I) though if I was a conscientious owner, they would be.  Yes, we have bats in our barns and woods and no, there has not been a rabid bat reported in our area in some time.

But what if this cat were potentially infected with the rabies virus but not yet showing symptoms?  Now my mind started to work overtime as any good neurotic will do.  Last summer a rabid kitten in North Carolina potentially exposed 10 people when it was passed around a softball tournament, no one aware it was ill until it died and was tested.  Lots of people had to have rabies shots as a result.

This cat who had bitten me was long gone–there was no finding him in the vast woods and farmland surrounding us.  He couldn’t be kept in observation for 10 days and watched for symptoms, nor could he be sacrificed to examine his neural tissue for signs of the virus.

I called the health department to ask what their recommendation was in a case like this.  Do they recommend rabies immune globulin injection which should have been done as soon as possible after the bite?   I talked with a nurse who read from a prepared script for neurotic people like me.  Feral cats in our area have not been reported to have rabies nor have skunks or raccoons.  Only local bats have been reported to have rabies but not recently.  This cat would have had to have been bitten by a rabid bat to be rabid.  This was considered a “provoked” attack as I had reached out to pet the cat.  This was not a cat acting unusually other than having wrapped itself around my arm.  No, the Health Dept would not recommend rabies immune globulin in this situation but I was free to contact my own doctor to have it done at my own expense if I wished to have the series of 5 vaccination shots over the next month at a cost of about $3000.   Yes, there would be a degree of uncertainty about this and I’d have to live with that uncertainty but she reassured me this was considered a very low risk incident.

I knew this was exactly what I would be told and I would have counseled any patient with the same words.  Somehow it is always more personal when the risk of being wrong has such dire consequences.  I could see the headlines “Local Doctor Dies From Rabid Cat Bite”.

This is not how I want to be remembered.

Rabies is one of the worst possible ways to die.  The cases I’ve read about are among the most frightening I’ve ever seen in the medical literature. Not only is it painful and horrific but it puts family and care providers at risk as well.  It also has an unpredictable incubation period of a up to a month or two, even being reported as long as a year after an exposure.  What a long time to wait in uncertainty.  It also has a prodrome of several days of very nonspecific symptoms of headache, fever and general malaise, like any other viral infection before the encephalitis and other bad stuff hits.  I was going to think about it any time I had a little headache or chill.  This was assuredly going to be a real test of my dubious ability to stifle my tendency for 4-dimensional worries.

I decided to live with the low risk uncertainty and forego the vaccination series.  It was a pragmatic decision based on the odds.  My wounds slowly healed without needing antibiotics.  For ten days I watched for my attacker cat whenever I went to the barn, but he didn’t put in an appearance.  I put out extra food and hoped to lure him in.  It would have been just be so nice to see his healthy face and not have to think about this gray cloud hanging over me for the next few months, as I wondered about every stray symptom.  No gray kitty to be seen.

Almost a month has gone by now and he finally showed up last night.  I could have grabbed him and hugged him but I know better now. No more Dr. Doolittle.

He is perfectly fine and now so am I, cured of a terminal case of worry and hypochondria which is not nearly as deadly as rabies but can be debilitating and life shortening none the less.

From now on, I’ll be contented to just “talk to the animals” like any good Dr. Doolittle.  I don’t need to cuddle them.

 

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photo by Nate Gibson