When Medical Care Hurts

When I was seventeen, I developed a medical problem due to no fault of my own.  It was painful, it was embarrassing, and when it became uncomfortable enough to disrupt my life, I went to see a well known surgeon downtown.

The specialist, tucked away in the hallow halls of academia, stared down at me past a pair of spectacles perched at the end of his ever-protruding nose.  When he examined the area, he spoke in a measured and controlled manner.

It's really kind of disgusting, actually.

These were not the words a self-conscious, suffering teenager wanted to hear.

He then proceeded to do an uncomfortable, totally unnecessary procedure, to "rule out other things" even though the diagnosis was obvious.  He  eventually offered a series of treatments.  I returned to the office once a month,  and low and behold the symptoms abated.  I felt more comfortable.  Maybe this nightmare was finally over.

When September came, and it was time to go to college, I still needed a few more treatments.  I arranged to see a specialist at the university because I would not be able to travel back to Chicago.  Although the new surgeon was no more affable, he showed up on time and asked few questions.

Unfortunately, the symptoms took a turn for the worse.  I trekked back to the hospital, and sat impatiently in the specialists office.  After waiting for over an hour, he entered the room, didn't bother to examine me, and said I would need surgery.  The surgery would be minor,  but recovery would take several months.

I immediately called the doctor from back home.  After the two surgeons talked on the phone, it became clear that the second had never clearly identified the issue, and was treating blindly based on the previously established diagnosis.  He offered surgery out of desperation without actually visualizing the problem.  

Needless to say, I walked out of the office and never returned to either surgeon again.  I did my best to treat my own symptoms, and six months later I was better.  Nearly a quarter of a century later, the problem has never reoccurred.

I often think of these experiences when opening the door to an exam room to see a patient.

Many of the details of the offices, the personal characteristics of the physicians, or even the quantity and quality of the pain have disappeared.  

What remains after all these years is not the suffering caused by the particular medical malady,

but the callousness of the two surgeons who treated me.

It's Time For Hospice and Palliative Care To Pivot

Movements come and movements go.  To be memorable, to last, depends on continuously refining the message.  The brand, by necessity blindingly clear in the beginning, must be anything but static.  Ideas mature, knowledge grows, and movements pivot.  They must pivot.

The meteoric rise of hospice and palliative care has had untoward affects.  Specifically, the treatment of pain and suffering has dislodged itself from the moors of clinical medicine.  A new generation of caregivers rightfully have focused on symptomatology, but have unwittingly separated the body from the soul.  To deny that they are intertwined, is to practice a brand of medicine that lacks nuance.

When one treats edema from low albumin with diuretics, dehydration ensues,  When one treats psychic pain with narcotics, patients become more sleepy but no less mired in pain.  When one treats dementia induced agitation with benzodiazepines, more agitation is likely.

Good hospice care is grounded in classic internal medicine.  If we are not asking why are patients feel what they feel, we will ultimately fail at palliating them.  If we want to remain relevant.  If we want this movement to have teeth, we must redefine our place in the medical stratosphere.

Here's how I see things.

Hospice and palliative care physicians should strive to be master diagnosticians.  We must be the detectives that parse not only the  physical but also the metaphysical.  We can no longer define pain and suffering as diagnoses.

Until we understand the how and why, our solutions will be misplaced and cockeyed.

It's time to pivot.

It's The End Of The World As We Know It

Amongst the deluge of social media offerings of late, a small quack filled the airwaves for but a brief moment, a few weeks ago.  While some say that the death of the medical blogosphere is greatly exaggerated, others lament the dearth of new and unique voices filling the vacuum.  Indeed so many good writers have come and gone.   Are we becoming extinct, or is this a short lived blip, a hiccup?  Does anyone really care about creating content anymore, or are we just a lousy group of aggregators prone to navel gazing and self promotion?

And more importantly, does it matter?  Anyone who has written publicly (for free) for long enough knows that we create content not for our readers, but for ourselves.  We write to fill an insatiable need that burns in our bellies and burst into flames marking the computer screen with the irascible contents of our insides.  Otherwise, it's just too hard,  Putting pen to paper, day after day, week after week, can not be done for someone else.  We are egoists, often aware of our audience in only the most oblique ways.  

We come and we go.  We write when the emotional energy is present and disappear when the drain of real life sucks us away from our own self reflection.  Our voices become quiet and humble, but they do not disappear.  And they return.  Maybe once again on a blog, or in an op ed piece in a newspaper, or in a less verbose microblogging platform.  

The question of the medical blogosphere, my friends, is quite irrelevant.  The drum of human creativity yearns to be heard.  Where and when, however, is much more an issue for the audience.  If you want to continue to hear the daily smattering of self involved creativity,

you might just have to intuit which way to roll the dial.

All Pain Eventually Stops

You look at me incredulously.

And indeed, what I've just said has probably shocked you.  That was not my purpose.  You see your loved one in the ICU, medical floor, or nursing home.  There may be tubes or IVs affixed in their proper places.  You see suffering.

Your loved one is dying and you are crippled by your own incapacity, my incapacity.  But look closely.  There is no sweat on the brow.  The heart rate is measured and steady.  In fact the room is calm.  This death will be quiet and subdued.

It is your suffering that I worry about.

I repeat myself, and watch your eyes closely for reaction.  I have done all I can for your relative.  They are likely past the pain, or will be soon.  But you, you my friend will question yourself.  You will dissect each moment, ruminate on each decision.  Your suffering has just begun.

I wish to protect you.

You did everything right.  Your love was more powerful than my medicine.  Your presence was more enduring than my treatments.   And your ability to understand this, your ability to let go of the guilt and be present will heal more than any morphine drip tethered to an unwilling forearm.

There are certain truths you learn in this business.

All pain eventually stops.  And suffering is generally left for the living.

Is Medicine Giving You PTSD?

I immediately noticed upon awakening that the intense jaw pain was gone.  I guess the TMJ was on hiatus.  Than I reached my hand down to my waist to make sure that the pager hadn't fallen off during sleep (as I do every morning); it wasn't there!  It took a few moments for me to remember that I had dispensed of it the day before.  For the first time in years, the buzzing, beeping, insistent mistress had been silenced.

And the rest of the week has been just like this.  No headaches, no jaw pain.  When I see a patient for a visit there is no ringing or buzzing interrupting my thoughts.  There are no overhead pages.  I can actually sit across from another human being and listen, you know, like regular people do.  Like someone has lifted a hundred pound weight from my back and all the sudden I can breath. I am light as a feather.

I feel like a first year medical student.  Free from the chains of overwhelming responsibility, I can return to thinking abut medicine for the pleasure of it.  No one pages a first year student out of the room for an emergency.  No one rushes him through an interview or scolds him for being too generous with his time.

All the things I hated about my job have suddenly disappeared.

How long can this last?  When will some malevolent force descend on me and take away this newly found joy that, until recently, I didn't even know existed?

Can I tell you how much I hated that pager?  That insidious soul sucker that buzzed against my skin in the middle of the night and woke me with heart racing: the bringer of bad news, evil things, death and disorder.  I started to jump even when the calls were for the most banal of issues.  I should have smashed it.  I should have snuck onto the train tracks and left it idling.

Yes, I know, it wasn't the pager.  It was the lifestyle that was giving me PTSD.  The lifestyle that was sucking every ounce of my soul and leaving me hollow, empty.

It is the lifestyle that most physicians still lead today.

The Home Visit

I guess it shouldn't have been a surprise.

Her house was exactly as I expected it to be.  The door couldn't have been more fitting; red wood with a green holiday wreath attached perfectly in the center.  The carpet was so white that I almost took off my shoes on the front porch before entering through the threshold.  The room was warm.  The ambient temperature was accentuated by a plethora of colors and fabrics in contrast to the stark carpet.

I stepped into her living room and unloaded my bag.  I took out my equipment carefully: computer, stethoscope, blood pressure cuff.  I glanced up at the book shelves as I prepared.  They were full of objects placed neatly in regular intervals.  Each was in it's correct place.  The place, I had no doubt, that it was inherently meant to occupy.

It was a new feeling of intimacy for me.  Not the kind one gets from doing a thorough exam, more like how you feel after you have been talking for a few hours at a coffee shop.  For possibly the first time in my professional career, I was on someone else's turf.  This was not my examining room.  There were no sterile walls or malfitting gowns.  Even my lab coat had been abandoned in the back seat of my car.

We stared at each other.  I cowered behind my computer as she relaxed in her reclining chair.  She looked more gaunt than usual.  Beneath the stylish clothes, manicured hands, and recently styled hair was a cachectic woman.  A woman who faced her cancer with the same cleanly order she decorated her shelves.

And I understood.

There would be no chemotherapy or surgery.  There would be no blood soaked gowns or protruding tubes.  These things were far to disorderly.  She would gladly trade in a few morsels of time to avoid such indignity.

She would die in her bed.  In her bedroom with her adroitly adorned picture frames and her fluffy pillows.  A little too soon for my taste as a doctor, but maybe that was OK.

I finished my exam and made some notations in the record.  I printed a few prescriptions to keep the pain and nausea at bay.   We shook hands before I left.

Crisp, clean, orderly.

It was like I was seeing her for the first time.   Seeing her as she really was.

And not some deformed image spit out by our healthcare's disfiguring house of mirrors.