Introducing The Palliative Care ICU

I think we are overly limited by our descriptive terms.  We throw around concepts like hospice and palliative care, but in reality the medicine I practice is much more a hybrid.  Many of my patients are elderly, demented, and plagued by metastatic disease.  Often when one of them becomes ill, it is unclear if they are merely treading water, or about to drown.  The problem with our modern definitions is that they leave little room to pivot.  Pivoting, it turns out, is critical to delivering humane, dignified, high quality care.  And our patients don't want  to be pigeonholed.  They want aggressive doctoring when it will be helpful, and hospice when chances are slim.  Unfortunately our crystal ball rarely provides the answers we are looking for.

With these ideas in mind, I would like to introduce the concept of the Palliative Care ICU (PCU).  Less an actual place than a state of mind, the PCU is a philosophy of doctoring that allows physicians to treat both aggressively and palliatively at the same time.  In other words, short term, intense, pain neutral interventions are carried out acutely with an eye on pivoting to hospice vs aggressive care depending on short term response.

In order to illustrate, lets consider Tom, an eighty five year old in a nursing home with metastatic lung cancer.  Although he is getting weaker, he still is able to ambulate and enjoy time with his wife and daughters.  One evening he develops fever and somnolence.

Tom has a fairly limited prognosis based on his aggressive malignancy.  On the other hand, his family has been enjoying visiting with him, and would hate for him to die prematurely from a treatable infection.  The patient himself has resisted hospice because he wants to continue getting chemotherapy.

If this is Tom's time to die, all parties agree to make him comfortable, and let him go.  On the other hand, if medical intervention could prolong his life and maintain a semblance of quality, no one would argue with intervening.

What is Tom's physician to do?

PCU Concept 1: Shelter In Place

Tom will die soon from his cancer regardless of the outcome of the current infection.  The last thing his family wants is for him to spend his last moments in an ICU being poked and prodded by strangers wearing isolation gowns.  Thankfully, there really is no reason to move him out of the comfort of his nursing home bed.  Given today's current medical climate, high level care can be delivered not only in extended care facilities but also in people's homes.  IV's can be placed, antibiotics given, and pain levels monitored.  If Tom were at home he could be attended to by an home health company or palliative care program.

Maintaining Tom's location is critical to the PCU concept.  It allows humane, dignified medicine without the trauma of escalating the place of care.  When possible, home patients stay at home, nursing home residents remain in the nursing home, and floor patients remain on the floor and avoid the ICU.

Tom's family and doctor decided to sign a do not hospitalize form and manage the current crisis in the comfort of his own room.

PCU Concept 2: Pain Neutral Interventions

Because Tom's quality of life was still reasonable, his physician and family felt that drawing blood tests, placing an IV, and beginning intravenous antibiotics was reasonable.

Each intervention was discussed amongst all parties and decided that the amount of discomfort was minimal compared to the possible benefit.  CPR and artificial ventilation and feeding, however, would clearly be painful and therefore were forbidden.

Although Tom continued to decompensate, he appeared comfortable and no worse for the wear given the current levels of treatment.

PCU Concept 3: Pivot, Pivot, Pivot 

Tom's physician reviewed the lab results with the family the next morning.  The kidneys were shutting down, the liver tests were abnormal, and Tom hadn't shown any signs of waking up.  He started to moan occasionally during the night and morphine was started.  The nurse carefully placed a few milliliters of medicine under his tongue every few hours, and he quickly became peaceful.

During a family meeting, Tom's wife and daughters understood clearly that recovery was unlikely and that little benefit would come from hospitalization.  Hospice was consulted.

Tom died quietly, surrounded by his family and friends, a few days later.

Conclusion

Conversely, if Tom had a limited infection like a UTI, he may have responded quickly to antibiotics and recovered uneventfully in the nursing home.  Either way, he was given high quality, judicious care that allowed nature to declare itself.

The future of healthcare is here.

We have to learn to drop our preconceived labels and adapt more hybridized models.

With this intention,

I introduce the Palliative Care ICU.

The Return Of The Prodigal Daughter

When I was in training, I had the mistaken belief that disease was treatable. I felt human weakness resided in the inability of the physician. If a patient deteriorated, if a battle was lost, it was because we weren't skilled enough. I studied with every extra moment. I followed the gurus and hung on each word of wisdom that flowed from their eloquent lips. I embraced the wonderful naivete, hoping against hope, that illness was curable and human fallibility could be scrubbed from our pristine souls.

There was a time after residency when I lost faith in medicine.  I kneeled at the steps of a broken shrine. In the great war against nature, we physicians waged an imperfect and often losing battle.  We flung our minuscule pebbles against the three headed dragon of cancer, cerebrovascular disease, and infection.  The darkness of night was set afire by noncompliance, resistance, and futility.

Many wars were lost, few were won.

Yet battle warn and beleaguered, humility, the prodigal daughter, returned to re stake her claim.  And I learned that being engaged is a gift that each physician can give.  When we listen, when we care, we provide a salve more precious than our impotent pills.  Our hands can be more adept than scalpels.

I've ended at the beginning.

The science of the novice has been tempered by the wisdom of humility.

I continually strive to use both.

Is The Doctor-Patient Relationship Like A Marriage?

It was like we were breaking up.

She stared at the ground longingly, and lifted her eyes from time to time as she spoke. She valued my care of her mother. She would never forget how I stood at the bedside during those last moments. And then there was her own health crisis. The emergency surgery was made more bearable by my familiar face in the emergency room explaining what would happen step by step.

She couldn't afford my new practice model. She crunched the numbers, and it just wasn't feasible. She didn't blame me. She understood that like any relationship, sometimes things just don't work out. Even businessmen and service providers have the right to raise their prices. She wouldn't argue with such innate American principles.

She was going to miss me, and I, her. The doctor-patient relationship can be like a marriage. Somewhere between the pointing and clicking, the arguing with insurance companies, and the struggles with preauthorizations, a true bond forms. We were two people, thrust together by unfortunate circumstances, who stood side by side for a portion of life's uncomfortable winding pathway.

Now our roads were diverging. For better or worse, we would go our separate ways. Many will look at me and point the finger of responsibility.

I will not deny my role in this unfortunate travesty.

But how many are facing similar circumstances forced by our current crumbling healthcare system? How many breakups are happening each day? How many primary care doctors are going concierge? How many internists are becoming hospitalists? How many pcps are being dropped from insurance panels as insurers respond to health care reform? How many physicians are refusing to take the new exchange coverage? And how many aging doctors are choosing retirement over meaningful use?

Marriages are being dissolved.

Relationships are being broken.

Who is paying the ultimate price?

Somebody's Doctor

You won't at first.

I mean you will try.  But eventually the poor gentleman cowering in bed will just become the homeless guy in room 114.  New admissions will cease to be opportunities to heal or learn.  You will dread the extra work.  Blood on your hands will no longer be the ephemeral pulsating evidence of life recently passed, but instead will be the muck mixed with excrement that you mercilessly scrape from your soiled hands.

And in those lonesome times when you're well rested enough to surface from the meandering haze of responsibility and fear, you'll scoff at the refection in the mirror.  A mere shadow of your premedical self, you will feel nothing but disgust.

Who am I? What have I become?

Many will scold me for saying that it is inevitable.  Am I too callus?  The soft supple character that leads us to medicine becomes quickly incompatible with the harshness of having one's hands intertwined in the bowels of the dying.  We all are mangled by the inevitable gears that grind daily on the smooth surface of our psyches.

If you are lucky, you will hold on to your humanity when it is safe.  You will cry unnervingly at the end of a movie so much so that others will look on awkwardly.  You will seek pleasures, whether carnal or gastronomic.  You may decide to exercise more, run a marathon.

In those moments when the sweat drips from your brow and the muscles in your calfs strain, you will feel alive.  Maybe more than you ever did in the hospital.  This will calm the unnerving emptiness you sometimes feel at work.

Life will not always be so smooth.  Friends will tell you that you are distant.  Lovers will say that you can be cold.

But with time the joy you so carefully cultivate outside the examining room can inch it's way inward. You may not connect with every patient, but you will learn to hold a hand, touch a shoulder, shed a tear.  You will no longer be soft or naive, however, that is gone for good.

Maybe you will be wise. Kind. An old soul.

And life will pass before your eyes.

And one day, perhaps, you'll become a husband or wife.

A parent.

Somebody's doctor.

Credit Due

I once mistakenly believed I knew nothing. Then after many years, with great hubris, I assumed a false sense of mastery over all that lay at my feet. It was only the wisdom of experience that taught me the truth lies somewhere in the vast in between.

It was nothing really, at least to me. I was in the midst of a busy, contentious, office meeting when my mobile began to buzz. I answered with the bitter taste of annoyance whipping from my tongue. It was a nurse from the skilled facility. My patient was declining. Frazzled by my surroundings and emotionally invested, I found just about every excuse for why she was wrong.

I looked at my watch impatiently as I calculated the time till finishing the meeting and the distance to the nursing home. It would be at least an hour. Mentally frozen by my preoccupation, the director of nursing jumped onto the line.

Dr. Grumet, we need to transfer him to the hospital.

A flash of anger rose red from my chest. Who was she anyway to question my judgement? Who does she think she is? But thankfully, the force of my own response made me pause. Indeed, she was the head nurse of the facility. Unlike me, she was currently staring at the patient as she had all day.

The fire in my belly cooled, the rage ebbed. I agreed to send the patient to the emergency room.

Hours later, I charted quietly at the nursing station. The director walked by and paused. I looked up and smiled humbly. I've learned over the years to give credit to people when they make good decisions.

You know you were right! Thanks for being forceful. I was too emotionally invested.

Her face lit up and she slipped away to her office.

I could tell that my admission had made an impact.

I guess doctors don't often give nurses credit when they are right.

And frankly, I think that's a shame.

Cancer And Baseball

Drip. Drip. Drip.

I would eventually come to recognize the sound of lives sliding down the drain. The life of a physician would allow me a front row seat to the horrors of disease, premature death, and total financial destruction. But my earliest memories were of the small bathroom in the back of that little antiques store. The leaking faucet was just one of the many signs of the decrepit and decaying building.

Downtrodden as it was, the storefront housed a certain vitality that attracted young and sometimes lonely preteens like myself. The owner, on a fluke one morning, decided to sell his old collection of baseball cards beside his bevy of antique trinkets and refurbished armoires. His first customer, a know it all teen, quickly bought his best cards at a ridiculous discount. The owner, impressed by the young man's knowledge, quickly hired him.

The baseball business took over. Before he knew it, the owner was bringing in more on cards than antiques. The market was certainly there, kids came from all over the neighborhood. They congregated at the back of the store by the glass counter with eyes wide. They bought packs, opening them as fast as their little fingers would permit, and stuffed the free piece of gum into their mouths with one fell swoop.

But it wasn't just the cards, the kids were also drawn to the owner. He was both congenial and authoritative. A buddy when you needed one, he was also the perfect source of fatherly advice.

Still spinning from the death of my dad at such a young age, I found an oasis of comfort in the back of that little antiques store. It was located centrally between my school and the bus stop. Every day I would race out of class and blast through the door with my back pack in tow. During the summer, I spent countless days sorting through cards, hoping to hit the jackpot.

A group of us became friends in those safe confines. Many, like me, were awkward and struggling with social interaction. When the teenage employee went to college, the owner chose one of my friends to take his place. At first I was quite jealous. Years later, I realize that my friend was struggling in ways more profound than I. The owner was wise enough to extend the olive branch to someone who really needed a break.

Years passed. I transitioned to high school, changed districts, and my interest in baseball cards wained. I still stopped into the shop from time to time. The owner was struggling. He had been diagnosed with cancer and was undergoing treatment. Luckily, he would survive the cancer.

But his business wouldn't. He was just sick enough from chemo that he had to ask others to watch the shop for him. Without his electric personality, the baseball card business dried up. So did the antiques.

I came back from college one year to see that my beloved store had closed. A beading shop called Bedazzled took it's place. I heard that the owner had gone to work for one of the big card shops a few towns over.

And a small part of my childhood disappeared, like that. I would never find that place again.

I realize, however, that I was the lucky one. The owner, faced with the horror of cancer, survived only to find that the house he had so lovingly built had evaporated.

This kind, gentle, wonderful man.

I guess cancer doesn't take such things into account.

Who Is Responsible?

But doctor, ultimately it is your responsibility.

I can hear the case coordinator clicking her fingernails against the desk through the telephone line. I admit, I forgot to specify to the nurse, when she called me ten minutes before midnight, that this was a full admission and not an observation. In the absence of my order, a nurse manager reviewed the chart and decided that the ninety five year old woman with congestive heart failure and positive cardiac markers was appropriate for observation status. Of course the order can be changed, but one day will be lost. She will have to stay in the hospital an extra night in order to qualify for the nursing home.

But doctor, ultimately it is your responsibility.

The physician on the line doesn't actually practice medicine. He gets payed by the insurance company to sit behind a computer all day and talk to clinicians like me. I wonder if he knows what it feels like to push on a belly and suspect catastrophe. I do. And occasionally I order a stat cat scan on a patient who is writhing on my examining table to rule out such horrible things. Apparently I should have done a plain film first before moving to a cat scan. Maybe then the CT would be paid for?

But doctor, ultimately it is your responsibility.

The coding and compliance people are reviewing a dozen of my outpatient charts. Some are over coded, some under coded. Occasionally my ICD's are all wrong. It's funny how the quality of care means next to nothing. The dictates are quite clear. Follow these inane and often opaque rules, or get fined. Or god forbid even worse, you might just find yourself in jail!

It's no wonder, I slink out of the office most days with my head hanging low.

For me, medicine is oxygen. It is the bread that I nourish myself with, the draught that quenches my thirst. I have dedicated myself to no other master with such faithful resilience. I have stood on the mountain of knowledge and suffocated on the precipice of my own incompetence. Slept for minutes instead of hours. I battered and bruised my body in the most unhealthy ways. I have been cowed by the humility and shear fear it takes to be responsible for the lives of my patients.

But nothing, nothing is as utterly demoralizing as being told, day in and day out, how irresponsible I am.