Your Days Are Short Here

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

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

Finding Out Who the Patient Is

Portrait by Norman Rockwell

If you want to identify me, 
ask me not where I live, 
or what I like to eat, 
or how I comb my hair, 
but ask me what I am living for, 
in detail, 
ask me what I think is keeping me 
from living fully 
for the thing I want to live for. 
~ Thomas Merton from My Argument with the Gestapo

As a patient waiting to see my health care provider,  I would adapt Merton’s template of personal revelation this way:

If you want to know who I am,
ask me not about my insurance plan,
or what is my current address,
or whether I have a POLST on file,
or whether I have signed the Notice of Privacy Practice,
or whether I’ll accept a message on my phone —
but ask me what I am most concerned about,
in detail,
ask me what I think is causing my symptoms
and what I think is keeping me
from eating healthy, exercising regularly,
and choosing moderation in all things
so that I can live fully
for the thing I want to live for.

As a physician in the midst of a busy clinic day, I struggle to know who my patients are beyond their standard medical history and demographics.  One of my goals in our primary care clinic, now sixteen years into electronic medical record (EMR) use,  is to create a way for our patients to provide their personal history online to us via their password secured web portal.   These are the questions our clinic staff may not have opportunity to ask or record during clinic visits.  Having the patient personally document their social history and background for us to have in the chart –in essence, telling us their story in their own words–can be very helpful diagnostically and for individualizing the best treatment approach for each unique individual.

There needs to be an “About me” section in the EMR that would contain biographical and personal history information the patient could provide online via writing or video.

Tell us about yourself

This is your own personal history in your own words to be added to your electronic medical record in the folder “About Me”. You can edit and add information at any time via this secure patient portal to update it.

We want to know your story.  Only you can tell us what you think is most important for us as your health care providers to know about you.  We may not always have the time to ask and document these detailed questions in a brief clinic visit, so we are asking for your help.  

Why do we want to know your non-medical background as well as medical background?

We evaluate a patient’s symptoms of concern but we also are dedicated to helping our patients stay healthy life long.  To assist us in this effort, it is very helpful to know as much about you as possible, in addition to your past medical history.   It is crucial also to understand your family background and social history.  We want to know more about your personal goals, and what you think may be preventing you right now from living fully for the things you consider most important to you. 

This is your opportunity to tell us about yourself, with suggested questions below that you can consider answering.  This information is treated as a confidential part of your medical record, just like all information contained in your record.  You can add more at any time by returning to this site.

1)      Tell us about your family—who raised you and grew up with you, and who currently lives with you– including your racial/ethnic/cultural heritage. If relevant,  tell us whether you have biological beginnings outside of your family (e.g. adopted, egg donation, surrogate pregnancy, artificial insemination, in vitro fertilization)    Provide information on any illnesses in your biologic family.

2)     List the states or countries you have lived in, and what countries outside the U.S. you have lived in longer than a month.  Have you served in the military or another government entity, like the Peace Corps?

3)      Tell us about your educational and job background. This could include your schooling or training history,  paid or volunteer work you’ve done.  What are your hobbies, how do you spend your leisure time, what are your passions and future goals.  Where do you see yourself in ten years?

4)      Tell us about your sexual orientation and/or gender preference.

5)      Tell us about your current emotional support system—who are you most likely to share with when things are going very well for you and especially when things are not going well.

6)      Tell us about your spiritual background,  whether you are part of a faith or religious community and if so, how it impacts your life.

7)       Tell us what worries you most about your health.

8)      What would you have done differently if you could change things in your life?  What are you most thankful for in your life?

9)      What else do you feel it is important for us to know about you?

Thank you for helping us get to know you better so we can provide medical care that best meets your unique needs.

As our clinic is moving to an updated EMR, I’m interested in hearing feedback from patients and health care providers.  What additional questions would you want asked as part of personal history documentation in a medical record?

Electronic medical records allow us, as never before, the ability to share information securely between patients and their health care providers.
Patients want to tell us their story and we want to know more about them. 

It is time we asked them and truly listen to what they have to say.


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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duckchelan2

 

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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