Tag: electronic medical records

Finding Out Who the Patient Is

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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

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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.

Handing the Medical Chart Back to the Patient

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CBC-lymphocytes-report

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.

Managing the Flamingo

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flamingo

photo by Chris Duppenthaler

Lewis Carroll Illustration
Lewis Carroll Illustration

The chief difficulty Alice found at first was in managing her flamingo: she succeeded in getting its body tucked away, comfortably enough, under her arm, with its legs hanging down, but generally, just as she had got its neck nicely straightened out, and was going to give the hedgehog a blow with its head, it would twist itself round and look up in her face, with such a puzzled expression that she could not help bursting out laughing: and when she had got its head down, and was going to begin again, it was very provoking to find that the hedgehog had unrolled itself, and was in the act of crawling away…. Alice soon came to the conclusion that it was a very difficult game indeed. ~Lewis Carroll from Alice in Wonderland

Navigating the U.S. health care system these days reminds me of Alice’s dreamscape game of Wonderland croquet.  A physician is given a flamingo mallet and a hedgehog ball and ordered — by the Queen at the risk of having one’s head lopped off — to go play, but the mallet won’t cooperate and the ball keeps unrolling itself and crawling away.  Just like any day in a medical clinic, a doctor’s time is spent trying to manage their flamingo and the patient gets tired of waiting,  so gets up and leaves.  At least Alice gets a good giggle out of it, but the reality in health care causes more tears than laughter.   We are playing a very difficult game of changing rules and equipment.

The flamingo in the doctor’s hands could represent the increasingly time-consuming requirement now to search over 68,000 ICD-10 diagnosis codes rather than the previous 14,000 ICD-9 codes.  Or the requirement to search for a 10 digit NDC number for any prescription medicine sent electronically to a pharmacy.  Or the “meaningful use” criteria that regulate mandatory data collection and reportage on patients to the Federal Government in order to receive full payment for Medicare or Medicaid billings.  Or the newly updated HIPAA and HITECH electronic security requirements to ensure privacy.  Or the obligations to the new Accountable Care Organization that your employer has joined.  Or the Maintenance of Certification hoops to jump through in order to continue to practice medicine.   The exasperated and uncooperative “managed” flamingo keeps curling itself around and looking at us with a puzzled expression:  just what is it you were supposed to be trained to do?    is there actually a patient to pay attention to in all this morass of mandates?

And the poor hapless hedgehog patient is just rolled up in a ball waiting for the blow that never comes, for something, anything that might look like health care is about to happen.  Instead there are unread Notices of Patient Privacy to sign, as well as releases to share medical information to sign, agreements to pay today’s co-pay and tomorrow’s deductible and whatever is left unpaid by Affordable Care Act insurance, passwords to choose for patient portals, insurance portals, lab portals and healthcare.gov.  It might be easier and less painful to just crawl away and hide from that bumbling physician who can’t seem to get her act together.

I wish I were laughing, but I’m not.  As both physician and patient, it’s getting harder and harder to play the game that is no game at all.  The threat of losing credentialing in an insurance plan, or getting poor ratings on anonymous online physician grading sites, or being inexplicably dropped from a provider list, or too unproductive to remain in an employer medical group, or losing/forgoing board certification is like a professional beheading.  We keep trying to juggle the flamingo motivated by those threats, all the while ineptly managing the managed care system, and hoping the patient won’t walk away out of sheer frustration.

It’s hard to remember why I’m in the game at all. I think, at least I hope,  I wanted to take care of people, heal their illnesses and help them cope with life if they can’t be healed.  I wanted to provide compassionate care.

It is enough to make a doctor cry.  At least we can meet our patients at the Kleenex box and compare notes, and maybe, just maybe, we’ll find enough common ground to even share a laugh or two.

 

flamingo2

photo by Chris Duppenthaler
photo by Chris Duppenthaler

What Oops Means to Me

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wwuredsquare

My husband, who I’ve loved for over three decades, has one (and only one) little annoying habit.  He says “oops!” for almost any reason.  It ends up being a generic exclamation that could mean anything from “I just spilled a little milk” to “There is a fire on the stove”.    If I’m driving and he’s a passenger, an “oops” from him might mean an impending crash or just a plastic bag flying across the road.  It is unnerving, to say the least,  to not know immediately what he is exclaiming about, or its significance.

What he doesn’t realize is that “oops!” can cause a PTSD response in someone with my history.

I was a very nervous third year medical student when I walked through the doors of the giant hospital high on a hill for the first day of my Surgical Rotation.  I had never been in an operating room other than to have my own tonsils removed at age four, and that experience was not exactly my happiest memory.  I worried I was not “cut out” for the OR, and wondered if I would faint watching patients being opened up, smelling the thin trail of smoke of the cautery burning bleeding vessels, or hearing the high pitched bone cutter saw.

The first lesson on my first day was to learn how to gown and glove up without contaminating anything or anyone.  It took several hours for an extremely patient nurse to get me to the point of perfection.  She taught me what to do if my nose itched (ask a circulating “non-sterile” nurse to scratch it over my mask), or if I thought I felt woozy (back away from the operating table so I don’t fall on the patient!).  I was ready to watch my first surgery by the afternoon.

It was fascinating!  I wasn’t lightheaded.  I could handle the sight of blood, wounds and pus, and the sounds and smells didn’t phase me.  I went home elated, eager for the next six weeks of caring for patients in a wholly new way.

Each day I helped in three or four surgeries, being asked to do different tasks by the surgeon, from holding retractors so he could see what he was doing, to doing the suctioning of blood in the surgical field, cauterizing blood vessels, and putting staples and sutures in the skin at the end.  The chief resident I worked with most frequently was a very high energy guy, talking non-stop during the surgeries, sometimes teaching (“what’s this that I’m holding? what does this connect to? tell me the blood supply to this?”), all the while listening to Elvis Presley tapes blasting over the sound system.  He’d dance in place sometimes, and sing along.  To this day, I can’t think of gall bladders without hearing “You Ain’t Nothin’ But  A Hound Dog” in my head.

So when the surgery got complicated, I could tell because all the surgeon’s antics stopped.  He got very quiet, and he focused on his hands, including getting more demanding of the staff around him.  Shadow swept in, covering his normally sunny personality, and he’d bark orders, and sometimes grab my gloved hands and move them where he needed them.

One day, we were involved in a high risk surgery on a patient with late stage liver disease, who had a recent near fatal bleed from dilated blood vessels in her esophagus, caused by back up of circulation that could not easily pass through her scarred liver.  The blood vessel shunt procedure the surgeon was doing would allow the esophageal varices to deflate with less chance of breaking open again.   The surgeon had been intently working, without singing or dancing that day, so when I heard him softly exclaim “oops!”, I looked up at his face.  His eyes were big and round, his forehead sweating.  I looked down at the large blood vessel he had just nicked accidentally, and then the wound filling rapidly with blood.

“We have big trouble here!” he shouted.  I was moved out of the way, and the surgical team launched into action.  I was sent five floors down to the lab to retrieve as much blood for transfusion as I could hold in my arms, and spent the next hour running blood up those five flights of stairs.

That patient didn’t make it.

Sometimes in my dreams, now thirty five years later, I am running those hospital stairs carrying bags of blood, swirling in a vortex of red.   I never do save the patient.

And “oops” always means big trouble.

Obscurity in Medicine

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photo by Josh Scholten

Be obscure clearly.
~E. B. White

As a family doctor, 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.  To begin with, 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, not at all pristine and clear.
Let’s face the lack of facts.  A physician’s clinical work is obscure even on the best of days when everything goes well.  We hope our patients can communicate their concerns as clearly as possible, 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 is quicksand much of the time even though our patients trust we are giving them rock-solid advice based on a foundation of truth learned over years of education and training.   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 a little 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.

Whose Life Is It Anyway?

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Sixty five 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 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.   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 understanding of their health.

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.