Tuesday, October 28, 2014

Ordinary People

Cheryl loved to dance.  There wasn't a time in our house when the the kids weren't jumping up and down on the furniture, the radio blasting, and her body swaying in rhythm.  Ironically, we were dancing when it happened.  It was her fortieth birthday.  The kids laughed and clapped as I dipped her dramatically and she sprung back into my arms.  And then she crumpled.  Tony, my youngest, giggled hysterically thinking it was a ruse.  I clutched at her lifeless body, all muscle tone was lost.

It was the emergency room physician who first used the word "stroke".  But what does a plumber know of such things?  In my experience you could always replace the damaged or diseased part.  I clung to this naive worldview as Cheryl was transferred to the ICU.  Tony and Lisa alternated between collaborating and arguing as I held vigil at her bedside.  And we waited.

Everyday the neurosurgeon came in with worse news.  First there was bleeding.  Then an increase in brain pressure.  The nurses whispered about hospice, but no one had the fortitude to talk of such things openly.  I wouldn't have listened anyway.  How does one give up on their lover, partner, friend?  If there is one chance in a million, wouldn't you take it?

The conference room was full of doctors and social workers.  Tony and Lisa stayed outside in the waiting area and played with legos.  The neurosurgeon was severe and agile, a man of action.  He described the procedure to remove part of the skull to relieve the pressure.  The Internist was mousy and meek. He used numbers and percentages.  He assured that it would be OK to do nothing, to let nature takes it's course.  I visualized Cheryl's brain like a drain clogged and stuffed to the point of bursting.  I imagined reaching with my tools and clearing the debris.  I decided to let the neurosurgeon have at it.

The years that followed were difficult.  Cheryl didn't die, but she never recovered either.  And each fork in the road was met with another gut wrenching decision.  Tracheostomy, feeding tube, nursing home.  Her brain severely damaged by swelling and blood, her recovery was tortuous and incomplete.

She did improve.  The tracheostomy tube was removed.  She is able to move her eyes and verbalize some.  The most coherent thing she does is cry.  Everyday, in the nursing home, by herself, she cries.  She is unable to lift her hands to wipe away the tears nor does she have the brain power to negotiate the psychological torture of her daily existence. She just knows that something is wrong.  And it cannot be fixed.

Lisa and Tony are teenagers now.  They try to visit from time to time but they are in the process of building their own lives.  They are stuck in the chasm between childhood and adult.  Their invalid mother is a constant reminder that life can be horrifying.

And I wonder if I made the right decision that day in the conference room.  Maybe we would have been better off if Cheryl died quietly in that ICU.  Maybe she would have suffered less.  But I try not to think about such things too often.

Because Cheryl, Tony, Lisa and I, we're just ordinary people.

We don't always know which way to go.

Tuesday, October 21, 2014

Parenting And Helplessness

Years later, I now wonder if I overstepped my boundaries.

Nancy was a pleasure to have as a patient.  A physician's assistant in her early twenties, we often chatted amiably during visits.  Our conversations randomly ambled between personal and professional topics.  She recently married and was looking forward to having children.  Her gynecologic history was complicated and after a period of months of unsuccessful attempts to get pregnant, she visited a local infertility specialist.

Although the workup was completely normal, one of her blood tests, while technically in range, was deemed "subpar".  Her obstetrician sent me a letter asking if I would monitor levels and adjust medications.  Appointments were made, labs were drawn, and a few months later a pregnancy test came back positive.

Nancy was overjoyed.  Every so often I would receive a note from her gynecologist documenting her progress.  Ultrasounds were normal.  A litany of screening tests uncovered no abnormalities.  Everything was perfect, or so I thought.

One morning I was surprised to find Nancy sitting in my exam room crestfallen, on the verge of tears.  Her gynecologist was struggling with her levels.  Her previously "subpar" blood test was closer to range, but still had not met the magic number that her infertility specialist had decreed optimal.  With her medical training skills honed from education, Nancy had searched out a bevy of papers suggesting a correlation between low normal values and poor pregnancy outcomes.  Thirty weeks into gestation, She felt like she was in crisis.

While I was unconvinced by the tenuous connection in the literature Nancy produced for me, I couldn't help but feel a lightning bolt rush through my own insides.  How many times had I struggled with these same fears with my own children?  How many times had I painstakingly deliberated over my little ones ad nauseum.  To give vitamins or not?  To treat with antibiotics or wait longer?  Every decision dissected and second guessed.  Each time feeling so sure that my failure to decide correctly would mar my child for a lifetime.

My eyes glistened as I told Nancy that having a child was like ripping your heart out of your chest and then leaving it in the open unprotected by the strong bony architecture of your rib cage.  That to procreate was to feel an uncertain type of helplessness that is unmatched by other realms of human experience.  She will try to control almost every part of her babies existence and fail over and over again.  And yet most likely, despite all her foibles, her child will be more perfect than she ever imagined.

Nancy, I explained, was experiencing the first pangs of parenthood.

We decided on a treatment plan.  We scheduled a follow up visit one week later.  And then she left the office.

I never saw Nancy again.  She cancelled all future appointments

Years later, I wonder how things went.

I often imagine her holding her baby lovingly.

Tuesday, October 14, 2014

Pressing Questions

Picture your shoulders thrusting forward as you slink into the nursing home or hospital at some ungodly hour in the morning.  Day after day, year after year, your gait adjusts to the facade of the foreboding colossus.  You become boxy, structural.  Familiarity has affected you.

It's not just the hospital, but the patients of course.  Being a physician is just like any other human being, just magnified.   You start with a basic unadorned body of armor.  Certain things penetrate: the first cry of a baby as he leaves the womb.  Others splatter and stain but you don't dare let them in: the swoosh of blood as it spurts out of a ruptured a-v fistula, the screams of fear, and the ever-present sobs of the mourning.  The outsides may become disorderly and unkempt, but the insides remain pristine.  Or so you think.

Patients come and go.  They either die or move away or decide they no longer want to receive care from you.  Hospitals open and close.  You move your office.  There is much transience.  The faces fade and the circumstances become hazy.  But the detritus remains.  You may forget the specifics but your exterior has been marred.  Your armor adorned.

Until the day you realize that you never really had any armor in the first place.  Just porous skin.  Now faded and bruised, you carry these marks with you. That which you relied on for protection has inevitably become a sieve.  Your insides are now also untidy.

And you may find yourself walking through the mall on occasional Saturday mornings with your family. Your children weaving through the isles and ducking under wayward clothes.  Your wife leafing through the discount racks in the corner.  Your phone hangs from your ear as you answer yet another phone call.  You stop mid orders to look at yourself in a full length mirror.  And you wonder if the reflection is really you anymore or some stranger.

The pain only lasts for a moment, and then you turn your attention back to the phone and answer-

whatever pressing question is being posed to you.

Tuesday, October 7, 2014

For Those Of You Who Worry About Me

Ruth was problematic.  Well into her seventies, her body may have dulled but her tongue was sharper than ever.  And she used it to lash me with complaint after complaint.  If it wasn't her knees, it was her ankles.  If it wasn't her ankles, it was her hips.  I battled the impossible month after month, year after year.  Our interactions left a bitter taste in my mouth.  Nothing makes a physician feel more impotent than the stubborn problems that refuse to bend under our practiced hands.

I am fairly experienced with complex medical issues.  I have never shied away from diagnostic challenges.  But I have to admit that Ruth seemed to push my buttons just so.  I started to dread our visits.  I winced every time her name came up on my schedule.

I am not proud of this.  The covenant between doctor and patient is sacred.   Neither a patient's attitude nor my inability to solve her problems is an adequate excuse for such feelings.  

It all changed instantaneously.  I was walking lazily through the Botanic Gardens with my family one weekend when I spied Ruth a few hundred yards away in the Rose Garden.  She was surrounded by children and grandchildren.  The young ones teased and coaxed as Ruth hopped back and forth with her walker.  Her laughter wafted effortlessly through the air.  She was alive and animated.  Her gait straightened, her limbs moved, and her face was alight with joy.  This was not the same crotchety woman whose visits I had grown to loathe.  I stared awestruck for a few moments before moving on.  

A week later, Ruth hobbled into my office with none of the aforementioned spring in her step.  After making small talk, I mentioned that I had seen her from a distance at the gardens.  I talked of how alive she was amongst her children and grandchildren.  How her laughter caressed each brow, patted each back approvingly.  I saw no evidence of a body crippled by arthritis.

I could see Ruth appraising as I spoke.  She was waiting for me to get to the point.  Eventually I stumbled through my thoughts out loud.  I wondered why I had never seen such joy in the office.  Although I am only familiar with a fraction of my patient's lives, I usually have a distinct feeling for who they are.

As Ruth replied, I could see the the amusement in her countenance at being asked such an absurd question.

Joy?  Meh.  You expect me to be joyful at the doctor's office?  This is where I go to complain about my knees?

Her eyes sparkled and I nodded with a more profound understanding of our relationship.

And so it is with my writing.

Tuesday, September 30, 2014

The Space Between Sickness And Death

There is much to deplore in our medical system.  Atrocities abound in the dark recesses of hospital wards, the over packed waiting rooms of outpatient offices, and the algorithmic hum of insurance claim denials.  Yet time and again, the most vile of of insults are hurled at one setting in particular.  I'm talking of the place cursed by emergency room physicians when admitting yet another poor soul with a sacral ulcer, a place spoken of by patients and families in the most hushed and fearful of terms.

I am talking of the modern day nursing home.

The allegations of abuse and neglect abound.  The New York Times is littered with stories and editorials claiming inappropriate use of medications.  The view of nursing home owners is a bunch of fat cats, deceiving our elderly and neglecting the flesh in favor of the all important bank account biopsy.  And no doubt, as with any reputation, some of this is true.

Nursing homes endure, however,  because there is no other setting for such patients.  Long after the hospital has discharged and the family has gone home, someone has to take responsibility for our most downtrodden: the poor, the frail, and those maimed by disease.  The extraordinary complexity of the average nursing home patient has leaped forward over the last few decades.  The staff pivot from the average knee replacement rehabilitation to a paraplegic with a stage four pressure ulcer, TPN, and no understanding of the meaning of a polst form or DNR designation.

Our society has chosen to see ultimate darkness in this place it so desperately needs.   Yet, if we are searching for humanity, we must crawl into the places that no light is willing to shine.  We must wade through the morass and stench of human depravity.  Down here in the space between sickness and death you will find us. On our knees.

CNAs, nurses, social workers, administrators, dietitians, therapists, and yes physicians.

Singing, crying, laughing, and comforting.

Perhaps holding your loved one's hand.

Tuesday, September 23, 2014

Will Healthcare Reform Destroy The ePatient Movement?

The ePatient movement represents everything that is positive in medicine today.  This grass roots force has introduced shared decision making and empowered both physician and patient.  The quality of healthcare dialogue has risen meteorically both in the exam room and out.  Today's healthcare "consumer" is more engaged, more intelligent, and more agile at wending their way through the confusing maze of sickness and health.

It's awfully sad that it has to come to such an abrupt end.

While you may accuse me of hyperbole, there is plenty of reason to believe that the gains made by this important and patient centric revolution will fall victim to the machinations of healthcare reform.  How could legislation made to benefit the populace have such untoward effects?  Its all about intentions.

The architects of the Accountable Care Act and the mountain of legislation that will follow were faced with the difficult task of allocating scarce resources to a growing and unsustainable national debt.  Instead of an open and honest conversation of rationing, the beltway answer was to hire a group of medical ethicists to convince us that population health is more important than the doctor-patient dyad that has been the basis of medical care for centuries.  Thus physicians become the steward of the population, allocating these resources as they see fit to benefit the community.

This version of healthcare is the complete antithesis of the ePatient movement.   Medical decisions are not inclusive, not patient centric, and not up for debate.  This is the ultimate form of paternalism.  The doctor feels that your expensive chemotherapy does not sufficiently benefit society.  There is no discussion.   Such statements would be almost laughable if not for the recent article by Ezekiel Emanuel in The Atlantic.  According to this prominent author and proponent of Obamacare, you (and society) will be better off if nature takes it's course swiftly and promptly if you are over seventy five years old.  And why not?  Zeke tells you it is so.

The ePatient movement extolls taking power away from central authorities (or paternal doctors) and placing it squarely in the hands of the patient.  Ezekiel Emanuel can't divine your values, life goals, or interests.  How can he decide what medical treatments are right for you?

The situation worsens if we consider the new structure of our healthcare system.  President Obama's self stated intention was to collect large groups of doctors into big organizations.  These organizations, he reasoned, would facilitate a team based approach sown together by technology and the abolition of fee for service.  He reasoned that doctors on salary would be much better penny pinchers and stewards of our national piggy bank.

As we have seen across the country, the cataclysmic mergers of hospital systems has created a majority of employed physicians, strapped to computers, and mired in the bog of administrative minutia.  Patients are becoming last in a long line of mistresses.  Physicians answer first to their hospital system, next to their electronic medical record, and then comes the government.  At some point, if your physician has enough time to leave his "team huddle", he may be able to see you a few minutes between most precious key strokes.  You are an afterthought.  There is no empowerment here.

In conclusion, I think the way forward for the ePatient movement is clear.  You have fought like bats out of hell against the paternalistic, backwards ways of the past.  It's time for you to turn your attentions to a more sinister villain.

Your government.


Friday, September 19, 2014

Personal Responsibility And Chaos

She was sick.  Not sick like a high fever, body aches and a runny nose.  Sick like she had spent the last half a decade in nursing homes as most of her internal organs failed.  There was oxygen, and dialysis, and a colostomy.  She propelled herself vigorously through the crowded halls in the custodial wing of the nursing home, her wheel chair a natural extension of her body thoroughly unhampered by bilateral leg amputations.  

She was sick, but she was thriving.  Every hospitalization, every set back, met with a perseverance and a stoicism of body that was nothing less than magical.  The fairy dust unfortunately spread no further than the entrance to her semiprivate room.  The rest of my patients didn't always pull through so well.

So when the biopsy came back cancer, there was little hesitation when she decided on having the surgery.  There were risks, I reminded her.  The chance of sudden death on the operating table was nothing to scoff at.  But I had no reason not to clear her.  The cardiologist agreed.  After much haggling and arranging, a surgery date was set.  A date that fell smack in the middle of my only planned vacation for the whole year.  Seven measly days off.

The surgeon was busy and couldn't rearrange his schedule.  I visited her early morning before leaving town.  She opened her eyes sleepily.  You are going to take care of me in the hospital, right?  She of course new that was impossible, but asked to be certain.  I assured her that the hospitalist group was excellent and would be attentive.

I left town.

Seven days later I returned to find her transferred to a distant hospital.  A few phone calls later my fears were confirmed.  She had a cardiac arrest a day after surgery.  She died.

It is hard to explain to the laymen what personal responsibility means to a physician.  Every death, every poor outcome is studied painstakingly.  A single question pervades this endless search, what could I have done differently?  It's not some sadistic game we play to torture ourselves.  It's more of a ritual.  A safeguard.  The study of medicine is significantly complex, and the foibles of human ability are delicate.  In a world where perfection is unattainable and the stakes are absolute, the only path to sanity is an overwhelming obsession with detail.  We swear to never make the same mistake twice.

For the most part this works.  I never forget to check the EKG of the demented delirious patient in the ER because of the acute myocardial infarction I missed in medical school.

Now, everyone would agree that even doctors have a right to a few days off now and then.  But it's often difficult to turn the demon off.  This obsession with taking responsibility for my patient's well being defies logic.  And I cling to it.  Every day, every moment, with every ounce of strength and might that I can muster.

Because without it, I fear, I will be more likely to become an agent of harm.   And this profession that has flowered in the bosom of my identity, will devolve into complete chaos.