Heaven And Hell: Portraits Of An Alzheimer's Ward

The lanky gentleman propels himself forward in a wheel chair towards the nursing station.  Crumbles of food fall from his chin and land on his old tattered flannel shirt.  He stops, as he is wont to do, at the half door that is controlled by a keypad.  He peers over and spies a staff member sitting at the desk in front of an open chart.

I'm hungry, get me some food!

The staff member lifts his head for a moment and returns to his work.  If one witnessed this solitary reaction in isolation, it would be assumed that this is a cold and ineffectual haven for the misplaced.  But in view of the repetitive nature of this event, it starts to become more clear.  This is the fifth request that has been made in the last half hour.  The emergency stock of cookies and crackers has already been used up.  The wheel chair backs up for a moment and then pushes forward crashing into the door.  The series of epithets and racial slurs that follow is enough to make even the most staunch observer blush.

#%#*&#%%%%#!!

A string of panicked words in a foreign language fly out of the mouth of a ancient woman cloistered in a room a few doors away.

Ayudame, ayudame, ayudame, ayudame...ayudame, ayudame, ayudame.

The tone rises and falls.  Sometimes the lilt of the voice suggests a question.  Others, it's purely a statement of wrath.  Occasionally, a moment of silence interjects until the rabble starts over again.  It will go on like this all day.  So long in fact, that her voice will weaken and become raw. Silence will follow only with the sweet respite of sleep.

Half way down the hall a smallish man sits in a over sized chair placed between doorways.  His body limply melts into the cushion, and he weeps uncontrollably.  A tall thin Asian woman towers above him draped in over sized pink scrubs.  Her cart of medicines has been pushed to the side, and her hands gently reach out to his sorrowful cheeks.  She clucks like a mother hen, and gingerly wipes the tears from his eyes.

Oh Harry, Don't cry.  Don't cry

Day after day.  Year after year.

Only the faces will change.

Brinksmanship

I hate it when I think of the best retort ten minutes after the conversation has ended...

She had enough.  Her son said many times that he didn't want to live this way.  Intubated, disfigured with tubes and lines, and riddled with small satellites of cancer throughout his body, he was no longer recognizable. Her voice was unwavering.

Remove the tube.

It was the right decision even though there were signs of improvement.  The last vestiges of sepsis had pushed the kidneys into oblivion.  The lungs moaned against the ventilator and refused to open.  Yet the fever had resolved and the white count was trending back towards normal.

I huddled with the staff and prepared the orders for the morphine and ativan drips.  I finished my note and turning the corner, I almost ran smack into the oncologist. She had seen my charting on the EMR, and rushed over to talk to the mother.  She was hoping to convince her otherwise.  She addressed me before she entered the room.

How come we push people off the building with chemo and then pull away the safety net right as they are hurdling towards the ground and need us the most?  Withdraw care?  He is just starting to improve!

I was so stunned, I didn't know how to answer.  Minutes later the mother shook her head as she listened.  She reasoned out loud. 

So we pull him from the brink, what then?  How are you going to fix the rest?

The oncologist left the room and returned to her clinic, beaten but resigned.  The breathing tube would be removed despite her objections.

Sitting in my office moments later, I couldn't help but think the oncologist had it all wrong.  Dying from cancer can be like falling off a building.  Without interference, one dies instantaneously, no harm no foul.  But sometimes we doctors pull out our flimsy tarp at the last minute.

The canvas defies acceleration and hinders death briefly, but doesn't fully cushion the fall.  Bones break and vertebrate snap.

The miserable soul then lies prostrate for days on a ventilator in the ICU.

Awaiting the certainty of death,

 in the most inglorious fashion.

Healthcare's Dumping Ground?

I couldn't really blame the social worker.  He was just doing his job.  The SNF unit connected to the hospital was full of flailing patients.  So he thought he would ask for a palliative care consult (after getting an okay from the primary team).  It was his third request of the day.  He spoke slowly as he tried to untangle the twisted path the patient had taken.

Dr. X was managing poor old failure to thrive before he came to the hospital.  But then Dr. Y, the hospitalist, admitted him and treated the urinary tract infection.  Dr. Z was covering Dr. W on the cardiology side.  And of course Dr. S, the oncologist, was giving chemo before he landed here.

My head started to swirl as I waived him away and ambled back to the nursing station.  This was another complex patient with multiple doctors and few answers.  I reviewed the chart and then went to the room and began my exam.  He was an elderly, confused, chronically ill gentleman with labored breathing.  He was unable to communicate effectively. 

I left the room and called the daughter.  She hadn't spoken to any of the doctors in awhile.  She was hoping to meet later in the day to talk.  I hung up and paged the nurse practitioner who covered the hospitalist patients in the SNF.  Even a move down the hallway ended in a hand off to yet another provider. 

It was just as I expected.  Doctor X didn't come to the hospital.  Dr Y had finished his week as hospitalist and was now off for the next seven days.  Dr. Z and Dr. W signed off the case since the cardiomyopathy wasn't responding to maximal therapy.  And Dr. S, the oncologist said that the metastatic prostate cancer was the least of the patients problem. 

So it would be me, the newly consulted palliative care specialist, who would sit down and talk to the patient's family about end of life and futility.  I would start a little morphine, tweak a few medicines, and stop the ativan due to delirium.

I have to admit that it all left a sour taste in my mouth.  This is just one example of many.  Yes, this is what we are good at, but it also kind of makes me wonder.

Has palliative care become the last bastion of sanity in the dumping ground of today's disjointed and broken healthcare system?

Your Fly Is Open

There's a good deal of soul searching that takes place in the exam room.  I see every flavor of strength and ugliness of the human character, sometimes all in the same person.  This strange mix of human suffering and superlative psychodrama have an effect on a guy.  After a decade of chasing this calling (and reaching toward a new number in the tens column of my age no less), I spend a certain amount of time trying to decide who I am. 

Now, it's fairly easy to dispel of the white night thing from the beginning.  Although a doctor, I'm no angel.  At times, my patience runs short.  I have had my moments of combativeness with my colleagues and proffered many apologies.  I am human with all the trimmings that come with the scarred irregularity of humanity. 

In this, my patients and I are the same. 

It's hard enough coming to the doctor's office with one's body broken and diseased.  It takes a small part strength and a large part courage to bare one's emotions to the stranger sitting across the table.  How awkward it is to undress and slip on one of those skimpy gowns with the strings that never seem to tie appropriately in the front or back?

There is enough embarrassment.  So when a patient is dressed and the counseling is over, if I happen to notice and open fly or a shirt that is sloppily untucked in the back, I mention it.  I come right out and say it no matter how my face may flush or how awkward the following silence may be.  In fact, I do this outside the exam room too.  Because I would want someone to tell me. 

And maybe in this, I have finally found a definition that suites.

Who am I?

I'm the guy who'll tell you your fly is open.

Every time. 

Bravery And Consequence

There's been a lot of patting on the back lately, and telling me how brave I am. 

And usually, I shrug my shoulders and bask in the glow of approval.

Lately, however, I feel more like a coward.  I hunker down in the exam room and shield my psyche from the initial reaction.  Brows furrow and words come out faster than mouths can speak.

You're leaving the practice?

Wrinkles become smooth as I explain the new paradigm.  What's there not to like: less patients, home visits, more proactive care.  Once again my nerves unwind, yet I know the moment has come.  The tone changes as we get to the yearly fee.  While it doesn't phase some, I can see the gulf form in others.  Eyes turn dead and dart towards the ceiling, expressions become frustrated or just plain angry.  They know they're being left.

I didn't have to do it this way.  I didn't have to start this early.  I could have just kept my mouth shut and waited to send a letter.  But that wouldn't be me.

I will stand before each and every patient.  I will tell them face to face.  I will accept their reactions whether joy or disgust, because I owe it to them.

I made this decision willingly,

I won't cower from the consequences.

Zero Sum Game

This is what I tell my patients...

The world is changing for providers.  Heavily medicare weighted, the last few years have seen a proliferation of administrative paperwork.  When not overwhelmed with forms, we are hunched over computers inputting inane information like race and ethnicity.  What we are not doing, is taking care of patients.  We are not interfacing with those that we have sworn to care for.  The covenant I have so often written about is being replaced with vague ideas of community health and meaningful use.  In no uncertain terms, we are letting you (the patient) down.  This makes me ill.

A few months ago, I had a crisis of conscience.  I could no longer sign off on this willful subjugation of the doctor/patient relationship.  So I crunched the numbers.  What I found shocked me.  Most of the revenue from my practice comes from nursing home work.  In other words, all those hours spent in the office and the hospital did exactly one thing.  They paid the bills for that very office and all my employees. It's a zero sum game.  I would be better off economically if I finished each day at nine am in the morning.

So I decided to radically change the way I care for people.  I will continue to go to the nursing homes, but I am also opening a micro practice.  Trading in my two thousand plus patients for a few hundred.  In fact, I am mostly contemplating visiting people in their homes or places of business.  My patients will have my cell phone number and email address.  When they call the office they will get me, not some nameless, faceless employee. Care will be more proactive and patient centric.  Technology like skype and face time will bridge the gap.  I will once again be able to devote the time and energy necessary for every single soul under my care.  I will still be forced to do paperwork, but when your patient load is a tenth of the size, the time consumed is much less significant. 

Of course, there are drawbacks.  To support this micro practice I will charge a yearly fee that is not payed for by medicare or private insurance.  This fee will subsidize all those individualized services not covered by traditional models.  The doctors in my area generally charge X for this type of service.  I will also charge X, but I will see you in your home or place of business instead of the office. 

In a few months, you will receive a letter in the mail outlining the details of my venture.  I invite you in joining me in a revolutionary and patient centered model of health care.  For those who decide not to follow me in my future pursuits, your medical records will remain here and one of the doctors in the office will be happy to pick you up as a new patient.

Thank you for placing your trust in me.

Death Is Often Quiet

It is one of the most difficult things for lay people to understand.

Usually there is a moment to collect my thoughts as the phone rings.  I speak slowly and deliberately.

Something has changed.

They are carefully chosen words to cushion the unavoidable plunge into darkness.  I know. I know. 

It happens dozens of times a year.  Death follows me home after a hard day of work.  It buzzes against my skin and awakens me from a deep sleep.  It yanks me out of exam rooms and interrupts family dinners.

Such irony for a boy excused from class in second grade to be accompanied home by a family friend.  My mother pulled me in close and whispered that my father was gone, even as relatives sat in the living room glumly.  But now I have become my mother and guide families through this awful blackness. 

I wonder how it affects me.  While others struggle with shadows, I see quite clearly.  My eyes have adapted so expertly that often I feign empathy as friends relate the tragedies of the day.

I didn't know my career would lead here.  I didn't know that I would be good at it.

I pray, my dear reader, never to meet you in this lonely place roaming beside me.  But, if I do, I might offer a bit of wisdom.

Death is often quiet.

Pain should be the exception, not the rule.

And suffering, it turns out, is mostly left for those who remain.