Proof Of Life

It's not that I was stressed out about being alone with the kids.  My wife had gone out of town before. It was the darn mornings.  I'm used to racing out of the house at the crack of dawn, when the rest of my family is still asleep.  My most productive hours of the day are before most people even wake up.  With my wife gone, the mornings with the kids were all mine.

Accordingly, I lounged in bed an extra few minutes before dragging myself into the shower.  Unlike most mornings, there was really no rush.   The kids wouldn't be up for another half hour, at least.  When they did awake, I would busy myself with their needs: dressing, breakfast, and of course, the dreaded hair.

For the next few days, managing my six year old daughter's hair was my sole responsibility.  And this terrified me more than a crashing octogenarian on life support.  Barely able to pull together my own personal appearance on a daily basis, preparing girl hair was definitely going to be a challenge.

It wasn't that I hadn't been prepped.  My wife, daughter, and I had a practice session before her departure.  But we all know that anything can go wrong on game day.

So there my daughter stood on a step stool as I tried valiantly to brush out the curly unruliness of sleep from the tangled tendrils.  Occasionally the brush would stick and she would protest whimperingly until I withdrew pressure.  As I had been taught, I parted the red sea evenly forming a straight line on top.  But as the slope of her head dove down, the part became a mangled twist of tributaries forking and bending towards the nape of the neck.

I grabbed a clump of hair clumsily, trying to entangle the band into a pony tail.  With each second that past, my daughter became more wiggly underneath my hands.  She hummed a nondescript tune and darted back and forth randomly.

My brow furrowed and the sweat formed at the base of my receding hair line.  My ineptness of hand was interrupted by the clarity of thoughts coalescing in my brain.  On any given day, at this time in the morning, I could find myself entrenched in the human condition.  Ensnared in an end of life discussion, examining a pus filled wound, or lamenting on the lack of response to a last ditch treatment.

You can't be in this profession long without realizing that the joys and pains of life are but fleeting flights of fancy.  Happiness is neither a place or a thing, it's a series of disconnected moments.  The more of these we have, the more we recognize, the closer to nirvana we come.

And we often recall the big ones: when our eyes first locked with that of lover, or a child slithered through the birth canal and into this great state of ineptitude that we all share.

But I can't help but think that there is a certain divineness in the minutia.  Standing in the kitchen with   my daughter's hair slipping through my hands as she dances to a silent song that only plays in her six year old brain, I can't help but think there is something important happening here,

I can't help but think that this is one of those moments.

One of those moments that make a life.

Are You A Physician Or A Secretary?

I'm no economist.  In fact I have never taken any business or accounting classes in my life.  But it doesn't take a formal education to get this.  We are speeding down the wrong path.

The call at three in the morning woke me from a deep sleep.  I fumbled and strained to hear the whispered voice of the apologetic nurse.  Apparently Mrs. Thompson had scraped her arm against the wheel chair, and suffered a minor abrasion.  No harm, no foul.  Except that ever since the state had come in  and eviscerated the nursing home protocols, extra precautions were being taken.  Some things just won't be left till the morning anymore.

My early trip to the hospital was no better.  My personal assistant called to say that I had to re do the form to get one of my patients a walker.  Although I had signed it by hand, we had typed in the date.  Apparently the medical equipment company required that the date also be written in ink.  It sounds minor, but I had to find a fax machine, wait for the fax to arrive, write in the date, and fax back.  All, of course, needed to be done immediately.

Luckily my hospitalized patient was getting better.  And since it was neither an admission nor discharge day, I just might escape without wasting too much time on paperwork.  As I was putting on my coat, the head nurse stopped me in my tracks.

"I just need to notify you that your patient claims she is missing fifty dollars, and can you sign this form acknowledging that you have been informed."

What?  Since when did I become a policeman?  Since when did take charge of all criminal activities that take place inside the hospital walls?  

Healthcare is being overrun.  Government induced regulation and documentation are creating mental gridlock.  The dictates of our forms and procedures are tying up those with the physical and intellectual know how to care for patients.

Why can't you get an appointment with your doctor?  Why are diagnoses being missed?  Why is the quality of healthcare in the United States declining rapidly?  Stop querying big data and start looking at the hunched backs and sore shoulders of the people who are inputting that data.

We are turning our physicians and nurses into scribes, field workers, and secretaries.  Those who create the most value, who took the most time and money to train, are being overloaded with menial and level inappropriate tasks.

No small business would be naive enough to operate this way.

Why then, should one of the largest sectors of our economy.

Ribs

The drink you spilt all over me
"Lover's Spit" left on repeat
My mom and dad let me stay home
It drives you crazy getting old

Sometimes I pretend, in the moments before waking, that I am a child once again.  That instead of this old hapless body, I am unencumbered by the chains of longevity.  In these unconscious waves of semi reality I am unaware of the degraded muscle and brittle bone.  I jump up and down on the bed and than race out the door through the endless fields of corn.  My father, the stocky build of a farmer, runs after me.  Before his skin became old and sallow.  Before I watched them lower his body into the ground.  I was middle aged by then.

This dream isn't feeling sweet
We're reeling through the midnight streets
And I've never felt more alone
It feels so scary getting old

They are all dead now: mom, dad, my sister.  After my son died, they brought me to this place.  They thought that I was mute after the stroke.  I guess it had never occurred to all those doctors that I may not have wanted to talk.  And of course, if you don't speak, you must be stupid.  

The staff comes to my room and yells at me in loud, slow tones.  I stare at them determinedly but don't dare make a sound.  Who would believe it now?  I whisper in the midnight darkness to no one in particular, it reminds me that I am still here.

Everyone I know has died.  A hundred years of motion, it appears that my body doesn't know how to follow them.

I want them back (I want them back)
The minds we had (the minds we had)
It's not enough to feel the lack (I want them back, I want them back)
I want it!

The only one who comes to visit anymore is the doctor.  He clucks quietly as he examines my belly underneath the sheets.  I see the wrinkles.  The skin of his jowls hang down like mine.  He is the  only other soul in the building as old as me.  After he visits he asks the nurse to sit me up in front of the window.  I watch the cars slow down and the breaks lights before turning the corner.  

I am alone.

You're the only friend I need (you're the only friend I need)
Sharing beds like little kids (sharing beds like little kids)
We'll laugh until our ribs get tough (We'll laugh until our ribs get tough)
But that will never be enough (but that will never be enough)

That will never be enough
That will never be enough
That will never be enough
That will never be enough

That will never be enough 

*Lyrics courtesy of Lorde, from Ribs

Motion

The first thing I become cognizant of is motion: the beating of the heart, the contraction of the muscles as I place the phone back onto the base or into my pocket, the shallow breaths that willow past the lips.  Only then do I contemplate notifying the family and giving my condolences.

Death has followed me from childhood.  Not as a specter lurking in the darkened corners but more like a willing companion in a yet undisclosed game of strategy.  And as far as professions go, there is a false intimacy in doing what I do.  To experience the aftertaste of mortality on such a regular basis without partaking in the bitter nectar, to place the little white cancer stick to ones lips and yet never inhale.

We are disconnected, I and those I tend to.   It is never so apparent than in those seconds after the last breath is taken.  There is a undeniable stillness in death. Anyone who has been present in the moment immediately can tell the difference.  There is a transition from the living, breathing, and circulating to inanimate object.  No matter how much we slow our bodies, blood still pumps, oxygen exchanges, and diaphragms pull down.

We look to the ephemeral, talk of such things as spirit and soul.  I am at a loss in such conversations.  Because as the warmth returns, I take a deep breath and make the phone call.  I stumble through the words I have mumbled so many times.

I am so sorry for your loss.  It was an honor and a privilege to take care of your loved one.  If there is anything I can do to make this better..

But in reality my oft repeated words carry a certain hollowness.  In an ocean of uncertainty they are merely tiny flecks of wood bobbing up and down in the great vastness.

They are utterances, vocalizations, vibrations that remind both speaker and listener that we are not yet standing upon the abyss.

They are motion.

I Did All This

Home visits are hard, there is no doubt about it.

I felt like I had been driving for hours.  The thirty minute travel time showing on my GPS was woefully understated due to the arctic temperatures and colossal snowfall.  My jacket and clothes felt caked with dried salt rubbed off from the car or somehow accumulated from the ether.  I pulled the key out of the ignition and braced for the subzero temperatures.  My bag, recovering on the passenger seat, was bulging with equipment: stethoscope, blood pressure cough, prescription pad.  The edges of the satchel were frayed from being inebriated  with excess.  My first month into the new practice, I was unsure what I really needed to bring.  Should I take the EKG machine every time?  What about the printer?

I was lucky to have found the house in the first place.  Tucked between a driveway and a bunching of overgrown trees, my GPS had to rejigger three times to deliver me to the wrong side of the culde-sac.  The glory daydreams preceding the start of this practice receding, I hunkered down to the business of building a business.

Thankfully, the kindly face that opened the front door was a familiar one.  I had come to the right place.  I knocked the snow off my boots on the cement ledge before walking into the warm confines of the house.  After a few pleasantries, I opened my bag of wonders, took out the computer, turned on the wifi hotspot on my phone, and produced a pile of documents that needed to be signed before any clinical visit could begin.

Thwarted.

My hotspot was malfunctioning.  My MacBook couldn't pick up the network.  Anxious to maintain composure to the innocent patient who had graciously signed on to continue under my care,  I made small talk as I nervously refreshed the network button.  Two, three, four times...no luck!  I was going to have to do this one blind.

I stared blankly at the computer screen, and than turned my attention to the patient sitting in front of me.  The encounter was more stressful than I had planned.  Without access to my medical record, I had to piece together a med list and clinical information.  Upon finishing my exam and doling out a few prescriptions, I apologized for my technical difficulties.

He assured me that it was no problem.  Everyone had mobile issues in his area.  It seemed that the thick air smothered the hubris of technology.  My head hung low as I gathered my things to face the cold air and blowing snow.   I felt the wind had been stolen from my sails.

As I reached out for my coat and shoes, my patient pulled me aside.

Here, come to the basement, I want you to see this.

He raced down the stairs forgetting that he had the knees of an octogenarian.  I followed in slow motion trying to keep up with this suddenly invigorated senior.  When I got to the bottom, it took a moment to adjust to the brightly lit studio.   The basement was filled with beautiful landscapes, oil on canvas, water color, mixed media.

All the sudden, looking a few decades younger, the old man stared at me.  His eyes were laughing, speaking without words.

I did all of this!

And indeed, I thought to myself silently,

so had I.

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.