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.

Thursday, September 11, 2014

Intimacy

We were intimate.

As intimate as a doctor and patient can become.  He had long outlived his wife and there were no children, no family, just friends.  When he first came to me he was lively and active, but the years took their toll.  Our visits became more regular.  Every six months.  Then every three.

His memory started to slip.  Occasionally he would look at me suspiciously when something went wrong.  His mind no longer able to wrap around the intricacies of medical care, he grasped at what was left.  If he forgot to pick up his prescription from the pharmacy it somehow became my fault for not calling it in.  Like family members do, we had our ups and downs.

But every time I walked into his hospital room after one mishap or another, he always looked relieved  and his lips would curve into a giant grin.  The last such occasion, he had had a stroke.  Although his limbs were working well, the muscles of his throat had been afflicted.  Each time he tried to eat he would choke and sputter.

His stay in the nursing home was disastrous.  His weight plummeted and he lost interest in living. We had long conversations about what could be done.  Although I hated the idea of a feeding tube, this simple surgery would bypass the problem and allow him to live comfortably.  It all made such great sense except that he wanted nothing to do with it.  He was ninety years old and didn't want a tube sticking out of his body.  He was ready.

I consulted hospice and we arranged his discharge.  A week before leaving he presented me with a neatly wrapped box.  I opened it to find his favorite bolo tie.  He wore it often with a short sleeve button down shirt and a cowboy hat.  He wanted me to have it.  I accepted it reluctantly, full of pride and yet mortified at the idea of actually wearing it.

I saw him a few more times in the nursing home before he left.  Each time his disappointment was clear.  He wondered why I wasn't wearing his tie.  And the truth is, I have no rational explanation for my actions.  It clearly would have looked ridiculous on me, but I could have put it on before entering the room and taken it off after leaving.

Decisions don't always make sense.  It's like that when your intimate with people.  You periodically disappoint them.  You can't always explain why.

He returned home, and died a week later.  From time to time I come across his bolo tie when rummaging through my drawers.  When this happens, I feel such longing and also a bit of shame.

Its not that he died, or that my medical care was sub par.  We were both quite comfortable with his decision.  It's the fact that I could have done something so simple, so straightforward, to make him happy.  And inexplicably, I didn't.

I have become fairly comfortable with the premise that occasionally being a human being exposes my shortcomings as a doctor.

It devastates me, however,  that sometimes doctoring reveals my failings as a human being.

Wednesday, September 3, 2014

All Of These

You want to know what it feels like to be a doctor?

I want to know what it feels like not to be.

There has never been a time that I wasn't a doctor.  There are things that one strives towards and things that reside in ones bosom before the act of becoming has yet occurred.  This has been my birthright.  I could no more have chosen a profession than I could my gender, my parents.

That is not to say that my future was carved in stone.  I suffered as did my brethren through self imposed asceticism, my head buried in text, my eyes watering, my intellect at times crying for mercy.  I did this not out of want or love, but more of unconscious habit.  Buried in the perverse coding of my DNA was a migration pattern, a way forward.

Graduating medical school, finishing residency was less about reaching the tip or peak of the mountain and more growing comfortably into the shoes that I had worn since childhood.  I had matured.

And being a doctor, being a doctor is neither a hobby nor a profession.  It is who I am.  It is complicated.    On occasion filled with terror and regret, fatigue and fear.  Triumphant at times, and downright disappointing others.  Like so much of life, emotions mix and homogenize.  Rough edges become smooth.

A blessing and a curse.

A privilege.

All of these.