What is Being Present Worth to You?

…Memories of presence…the intensity of interacting with another human being that animates being there for, and with, that person.

Arthur Kleinman, The Lancet, Vol 389 June 24, 2017 Pg 2466.

“Doc”

“What do you have?” I ask the paramedic with the clipboard standing in front of me. The ED is rather busy. I am trying to arrange transfer of a man with an intra-abdominal abscess and one with neutropenic fevers. The prospect of more work does not excite.

Hank, an older paramedic who really enjoys the “medicine” part of his job, launches into his presentation.

“Rex Mayfair is a mid-forties man with a history of metastatic prostate cancer, Stage IV presents with urinary retention since this morning. This happens occasional for him and he comes in and we place a foley and have him follow up later. I already bladder scanned him, 570ml, and our scanner has been underestimating lately. Can I place the foley? He’s hurting.”

“Any fevers, weakness, blood in his urine?”

“A little bit of blood earlier, none now. Otherwise no changes from his baseline. He is not currently undergoing treatment for cancer, but is not on hospice. Can I place the foley?”

“Sure, go ahead. I’ll be in a bit.” I am relieved he has such a simple complaint. Something straightforward. Shouldn’t slow us down too much.

I return to organizing antibiotics and transfers for my other two patients.

Cancer Just Sucks

Eventually, after I tie up some loose strings, I make my way to Rex’s room. By the time I get into his room, Hank has already placed the foley, 1000ml out, and Rex is feeling better. My participation is really only procedural – a physician needs to physically see every ED patient.

I have a confession to make, I hate cancer. I hate how all consuming it is. As someone who initially trained in family medicine, cancer makes me feel as though I have already failed. The time for prevention was long ago. Now we sit at the mercy of the tumors.

Bad cancer makes me feel helpless. Doctor’s hate feeling helpless. Rex had bad cancer, and he was young.

Walking into the room, seeing Rex’s young, gaunt face makes me want wrap this up as quickly as possible. I only need to make sure there is no reason to suspect this is something other than swelling related to the cancer and I can rush him on his way. This should be quick…

To be Present or…not

“Hi, Rex, I am Dr. HighPlains, are you feeling any better after the foley?”

“Oh yeah,” Rex says in a defeated sigh. “It is better now.”

He just looks so damn tired and weak. I inhale deeply, but shallow enough so Rex didn’t notice. I sit down in a chair, recline slightly, and prepare to be here for a while.

After a few perfunctory ED questions, I asked Rex how things were going otherwise.

“It sucks, y’know, it just sucks.” He admitted.

“I can only imaging how much it sucks.” My patterned doctor-speech.

“I hurt all the time, cancer is in my bones. My hips and back, they ache all the time and then trigger muscle spasms.”

Without probing, he tells me how his urologist diagnosed him after 8 months of treatment for prostatitis. He describes how he was on hospice for a bit, but didn’t want to have a catheter permanently yet, so now he is not on hospice, but not pursuing curative treatment.

I simply nod in silence. His eyes are sunken and tired, but whenever he looks up, mine are there to greet his and hold his gaze as long as he desires it. He pauses frequently, but never seems done.

He continues, again without probing. He decided not have chemo because he has a form of muscular dystrophy. His oncologists told him the chemo would render him bed-bound from weakness.

“I would’ve had no quality of life…it just sucks, y’know.” He trails off into silence.

“Yes, it does.”

You Don’t Have to Ask a Dying Man

What do you say to make someone who is dying feel better?

It is a trick question, of course. Not because there is nothing to make them feel better, rather the thing involves no speaking. The answer, it turns out, is simple: you listen.

You listen. Even when it makes your own heart break, you listen. You listen through the descriptions of pain which makes you wilt. You don’t have to ask a dying man anything.

If you listen, he will tell you everything he wants you to know.

Rex isn’t done. He tells me about the facebook groups he’s found, which have been helpful to fight the isolation of living in the middle of nowhere with end-stage cancer.

He describes how much he used to enjoy driving the bus which took local elderly to events in the city and hearing their stories.

He misses that.

He tells me again about the pain. He tells me how his doctor prescribed him oxycodone for the pain, but he doesn’t like taking it. It makes his sleepy.

He has two little girls. When he took the oxycodone he just slept all day. His voice trails off, but I hear the implication.

He would rather be awake in pain with his daughters than sleep away whatever time he had left with them.

“It just sucks y’know, I’m only my forties, not an old man. Shouldn’t have to have a tube up there….it just sucks….” He bows his head, the brim of his baseball cap hiding those eyes, deep-set in his sallow, bony cheeks.

At that moment, it was a good thing I was listening, I couldn’t have said anything if I’d tried. I was speechless. My mind whorled in appreciation for the beauty of his simple statement.

“I have two little girls, I just slept all the time.”

This man, who has all the right in the world to numb himself from the pain of his situation had decided being present with his family was worth the pain.

Maybe when someone tells you the name of the thing which will probably kill you, time becomes palpably more dear. I don’t know.

What would I suffer through to give my daughter better memories of her father? What would I suffer through to have those memories and make more for as long as I could?

Few of us face a choice so stark, but in some way or another, we all face Rex’s choice. We can choose to be present in our lives and in pain, or choose to chase numbness.

I sat in a room with courage that day. I sat in a room with a man who chose to live his life rather than run from death.

Occasionally, if we let ourselves, we can awed by those we see through our practices But, we have to let ourselves sit in acceptance and receive the gift. I could have easily kept moving and had Rex on his way.

Instead, I sat down, and I am richer for it.

Featured Image: The Artist’s Father in His Sick Bed, Lovis Corinth, 1888.

A Shift as Death’s Attendant

“When was the last dose of epinephrine?” I ask the Tara, the recorder.

Her blood is everywhere. My gloved fingers are tacky with it.  I see it dripping off the edge of the bed, smeared across the floor, oozing from the open fracture of her right leg.

Her foot, connected to her leg only by skin and tendon, was still in a shoe. This struck me as an obscenity.

I watch blood pulse back forth in the tube draining her chest with the same rhythm as the chest compressions.

Tara’s reply makes its way through the commotion, “3 minutes ago.”

I turn to the team.  “Get ready to give another dose of epinephrine. Pete, take over chest compressions at the rhythm check.”

“Still in asystole.”

“Resume compressions, give the epinephrine.”  My voice has so little emotion. It seems to simply echo the recordings of the ACLS trainings I just completed the week before. Good timing, I think to myself.

On the Banks of the Styx

This is the second time in 48 hours I have stood at the foot of the bed, directing our modern dance with death. 

36 hours ago, it was all for show. We surmised he was dead well before his family found him. But EMS started CPR in the field, so we continued it. We invited the family in, to see us try and bring him back to life. We showed them all we could do.

We added artificial adrenaline to his veins. Then, when the lab-made adrenaline did nothing, we gave him our own – in the form of chest compressions, bagged breaths, and sweat-beaded brows. We danced with him, this newly dead man. We danced for his family.

We danced so they would know the drama and pain of the moment when we had done all we could.

He gave his body to those he left behind. He allowed us his body as salve to the grief of those who would miss him.

Dance of Death, replica of 15th century fresco; National Gallery of Slovenia

He sacrificed his body to lighten the burden of guilt of those he left. He didn’t make that choice, we and his family made it for him. I don’t know if he would have wanted it, but I found the gesture noble.

Now, 36 hours later, I am back in the same position. But this woman, she came in alive. Now, she was dead.

Only by standing at the threshold do you see how thin the veil really is.

Despite the intubation, the fluid, the pressors, the chest tube, her heart had stopped.

A code can actually have a lot of down time, especially once chest compressions have been going on for 20+ minutes.  I take a moment to let my mind slide out of the algorithm.

I look at the woman on the bed.  She is elderly.  I can hear the crunching of her multiple rib fractures with each compression.  Dying in a car crash after you have lived so long.  Such a violent death, so unexpected at that age.

“Doc, I have the family on the phone, can you talk to them?”

“Yes.” I grab the phone.  “This is Dr. HighPlains.  How are you related to Gladys?”

“I am her son, what is going on?”

“What have they told you so far?”

“Only that she’s been in a bad car accident.”

“Yes, she has. When she came in she was having difficulty breathing and had severe fractures in her legsand ribs. We had to put a tube into her lung to drain blood that was keeping her from breathing and put her on a ventilator. “

He sighed audibly in the phone.

“We started giving her blood as she was bleeding internally. Despite all of this, her heart has stopped and we are now doing CPR to try and restart her heart….I am so sorry.”

“We are currently doing everything we can do. However, in my experience, given her injuries, it is unlikely we’ll be able to get her heart restarted.”

Silence.

“Do you know what would your mother have wanted us to so in this situation?”

He regained his voice. “Well, I am her Power of Attorney. How long have you been doing CPR?”

“About 25 minutes.”

With a tired, tremble in his voice, “I need to get my head around this, Would you keep trying for 10 minutes, and then, if nothing changes, you can stop.”

So, the music continued. And again, we danced. And Gladys too, sacrificed her body for those who will grieve her. We all tried not to focus on the grating of the ends of her ribs past each other.

It is such violent dance, these days.

Time of Death, 18:00

12 minutes later, I made a phone call.

“Sir, this is Dr. HighPlains again. Unfortunately, we were unable to get your mother’s heart restarted…”

“Thank you for everything you’ve done…”

We share a few more words, and I hang up the phone.

The Strange Calm

The routine of operationalized death begins. I sit back and watch. I slowly peel off my trauma gown. The ball is over, no point keeping up the dress code.

I watch the nurses. They cover the body first. It is a body now, no longer a person, at least medico-legally. Staff has already notified the coroner. The transfer of care is in process. I no longer have a patient.

The nurses start gathering the detritus up and throwing it away. I help feebly. We draw the curtain in the trauma bay. It is customary to the give the dead their privacy.

But, whose sensitivities are we really protecting?

Breath, Light Awareness

I sit down at the computer. Documentation is impatient. I pause before I start typing. I sit and feel. I notice my breath, and my pulse.

Luxuries, I suppose.

I can feel the heaviness of death. I do not feel guilt, I do not feel shame. I did everything I could. Could we have used dopamine instead of levophed, sure. Could we have tried externally pacing when her heart rate started to drop, sure.

Nonetheless, I do not second guess. Death sits next to me in heavy silence. I do not shy away, nor do I linger in fascination. I allow my body and breath to relax in acceptance. All our paths end here.

Click…Click….Click

“Patient arrived by EMS transport in extremis….”

Walking the Ghost Road

Working as a doctor in small towns on the High Plains, I have learned to do without a lot of luxuries. Those practicing in larger centers would consider many of these things necessities, such as being able to consult someone to the bedside, ever.

I do, however, have one luxury that is exceedingly rare in world of Modern Medicine, time to reflect. As I often only see 5-10 patients in a 24 hour period, I sometimes have a good deal of this.

Moreover, now that I have an infant at home, the time I have to reflect while at work is even more precious. I have yet to find a way to sell my 2 month old daughter on the value of quiet contemplation.

Since high school, I have tended to reflect while walking. When I screwed up a test, or embarrassed myself at school, that evening I would go on a long walk, sometimes for hours. I would meditate to the slow movement of my small town past me.

I still do this. Today, I took a walk on the slight hill above the hospital. A “wellness path” winds its way through the buffalo grass, prickly pear, and yucca. I walked the path in laps, waiting to be called in.

Those Who Came Before

Halfway through a lap, I came to the single grave that marks the halfway point. It is a modest affair. A small white headstone with only three letters marks the spot.

The earth over the grave is covered in the same high plains vegetation as the nearby pastures. Prickly pear and rabbit brush grow up around the headstone. Eventually, someone erected a very sturdy pipe fencing around the grave, likely to keep cattle from rubbing on the grave marker.

Perhaps most interesting, this lonely, solitary grave belongs a fellow physician. In the late 19th century, a wayward doctor had settled in this water stop town on the railroad. The townsfolk laid him to rest on a slight hill that overlooks the shallow, cottonwood-dotted valley of a seasonal stream.

I lean against the iron fence and stare up at the night sky. It is a wonderfully clear and dark night. I savor the lack of light pollution and the horizon to horizon views. Scanning the southern sky I see the milky way.

The Ghost Road

In Lakota cosmology, the milky way is known as the Ghost Road. It is the path all spirits must walk on their way from this world to the next. I let myself get lost in the imagery of walking through the galaxy as a spirit.

As I imagine my spirit side-stepping stars, I remember my fellow physician next to me. He walked that road over 100 years ago as a young man. Less than forty, it looks like. It is near impossible to imagine the life and profession of a true frontier doctor.

Nonetheless, profession and location bind us together. We have both doctored and cared for people in this little town. Even if the march of time makes it impossible for us to know each other as people, we are related.

This is also a Lakota idea – Mitakuye Oyasin – We Are All Related.

I reread the plaque explaining this grave.

A Life in a Paragraph

The good doctor had arrived in 1880. Two years later smallpox erupted in town (could he have imagined an era when doctors would have never seen a case of smallpox?). An old cow puncher came down with disease, and the good doctor cared for him.

The old cow puncher recovered, but the good doctor contracted smallpox. He eventually succumbed to the disease and was laid to rest on the same lonely windswept piece of prairie where I talk my contemplative walks.

“A good doctor…and a good man.” The plaque states.

Does the brief story on the plaque have meaning for me as a physician?

This physician died in the service of others, and I complain about not feeling fulfilled by modern medicine. In his calling, he sacrificed everything. Noble? Maybe, but also a complicated legacy.

From the plaque I also learn that he left behind a wife, who had accompanied him from the East. It does not say what happened to her out on the alien High Plains, alone, in grief. He also left behind an isolated, frontier town without a doctor.

How many went undoctored in his absence? I will never know.

Doctors Get Sick, Too

The irony of his death from the disease he was treating is not lost on me. Physicians are part of the societies they inhabit. Inextricably linked. In medical school, I often heard vague citations that physicians have higher rates of heart disease than other professions.

Most of these statistics came from before we started to turn the tide on heart disease. This was before cholesterol drugs and anti-hypertensives were mainstream, but when smoking still was.

Now, on the internet, I read about the burden of stress, anxiety, and depression doctors bear. It is no surprise, mental illness and its complications (i.e. addiction) seem to be an epidemic sweeping our country.

Why should doctors be immune? Especially, if we spend hours and hours caring for people with these diseases, is it no surprise some of it might rub off on us? You cannot vaccinate yourself against despair, loneliness, and disconnectedness.

Yet, We Are All Related.

I step away from the fence, feeling indebted to this long departed colleague of mine. Many, many things have changed in Medicine. Nonetheless, some things seem not to change.

Being a doctor is a hard job. It demands a lot. More than any one person can reasonably be expected to give. Yet, we do give, repeatedly and sometimes to excess.

The good doctor on that hill on the High Plains gave all he had to Medicine. It was sacrifice, yes, but I don’t want to glorify it. I will not say Dulce et Decorum Est Pro Medicina Mori.

Nonetheless, for a moment, I feel connected to a different kind of Medicine.

Not the Medicine of RVUs and production targets and treatment algorithms, but a deeper calling to serve humanity.

I’d like to think I can be doctor without sacrificing everything. But it is a delicate balance, and more often than not and I am too far one way or the other.

My eyes trace the line from his headstone to the Ghost Road in the southern sky.

At least, I think, I am not alone on this road.

Hemingway and the Danger of Persona

I love reading Hemingway. I am unabashed about my love of his writing. Before everyone freaks out and starts listing all of the problematic aspects of Hemingway when viewed through a modern lens, I am well aware of all of the arguments against Hemingway.

Those arguments are part of the reason I love his writing. Simple, perfect people are useless when it comes to extracting lessons for life. No writer worth reading stays perfect through the centuries.

One of the best parts of reading Hemingway is the existence of a decent companion work which puts nearly every major piece of his work in perspective.

While I could write a book on these various topics, one that I have come to appreciate during my struggle to reclaim my humanity from medicine is the cautionary tale of the Hemingway Persona.

Personality vs Persona

When you read about Hemingway’s early personality the evidence largely points an idealistic, sensitive, and very motivated young artist. He wrote a lot about “manly” pursuits (fishing, hunting, etc) even his early days, but they are almost always a backdrop for extremely human and vulnerable emotional struggles.

Additionally, he drank too much, a common form of self-medication for the overly sensitive in this insensitive world. He was desperate for approval in his professional life and intimacy and adoration in his private life.

Big Two Hearted River illustrates this the best. I read those stories as a form of literary meditation repeatedly the winter after my daughter died. Indeed, I channeled a little of that story into one my posts.

In 1926, he published the The Sun Also Rises to critical acclaim. The literary persona of Jake Barnes (based off of himself), who fished the Basque Pyrenees and dodged bulls in Pamplona, captured the imagination of readers.

From that point on, Hemingway became that persona more and more in public. Over time, the work of putting on the mask invincible masculinity took its toll on Hemingway. It is worth noting that he projected that persona strongest in middle life, when men most acutely have to reckon with their inherent vulnerability.

Hemingway’s public narrative of invincible masculinity became increasingly untenable overtime. This, as well as a genetic predisposition to depression, alcoholism, and chronic pain from injuries in plane crashes led to increasingly deep depressive bouts.

In the end, he killed himself. After a life of building a persona which conflicted so deeply with his underlying personality, this is the only way Hemingway could have died. His public persona could only allow Hemingway to kill Hemingway. No other could have been up to the task.

Does the Doctor kill the Person?

Physicians, arguably more than most common professions, have a strong public image. Strong yet caring, never tiring, cocksure at times, in pursuit of the care of their patients.

Physician culture is very intolerance of aberrancy in this personality type. This is on display in a recent back and forth in the comments by a Douglas Hoy of one of M’s Posts over at Reflections of a Millennial Doctor.

A good portion of my medical school’s non-basic science or clinical education was spent indoctrinating us into the professional image of the physician. We all must wear professional masks. However, the pressure to fully become the mask of the physician is stronger than most.

While I think some people already are or become “the Doctor.” For the rest of us, those who were pretty satisfied with who we were before being physicians, this personality dissonance can be a deep struggle.

As Hemingway’s struggle with his persona show us, if the dissonance is too great, it can be fatal. In many of the stories of physician suicide, people reference this personality vs persona dissonance.

“She was always so happy.”

“Everyone loved him.”

“She was so successful.”

Dissolving the Narrative Dissolves the Self

For many, the risk of “being found out,” or having the persona destroyed is too great a risk. As I have said before, narratives are extremely powerful. We construct ourselves through narrative, if ours is at risk of dissolution, it can seem no different than death itself.

For instance, the country of Macedonia is changing its name to North Macedonia in order to join NATO. The narrative of Macedonia and Alexander the Great being Greek is so important to Greek identity that Greece has blocked Macedonia’s entrance into the organization. And people are still pissed off.

That is how strong narratives are. I am not victim blaming or minimizing the importance of clinical syndromes of Ddepression and anxiety.

However, part of the road to healing is identifying paths and actions we can take to work back towards health. One of those paths is the work of creating a physician persona that is concordant with our native personalities.

As usual, Hemingway says it best in his writing:

“The most painful thing is losing yourself in the process of loving someone too much, and forgetting that you are special too.”

― Ernest Hemingway, Men Without Women

In loving our idea of the doctor more than the person we are, we risk forgetting that we were already special, already worthy.

In the work of healing it is important to continue to be our authentic selves. I believe we will be most effective and keep ourselves and patients safer if we reclaim our humanity and leave our personas at the door.

Mindfulness on the Fly

The Walk

I can feel the increase in pressure as the shoulder straps dig into my shoulders with every heaving step up onto another piece of talus.  I just crossed the eleven-thousand foot mark.  Five miles and fifteen hundred vertical feet, not all that bad, considering.    

The dry winter has opened up the high country early, so I am heading to a small glacial tarn that is about 500 vertical feet and a half-mile off trail.  I have only put my rod together once in the last 6 months.

Struggling out of an alpine willow thicket, I drop my pack in view of the lake.  More like a pond really – but deep as a lake. 

The Water

This high water is not on the official stocking list for the state’s department of natural resources.  Yet, the trout seem to overwinter well in its deep cold water.  Moreover, it has no passable outflow to lower waters so the trout are safe from whirling disease and other such pests. 

They sit under the ice all winter, waiting for their brief 4 months of feeding.  I have timed it well – iceout was just last week it appears.  One full shoreline is still snowbound. 

I pull out some medjool dates and a water bottle, slowly chewing each date and rinsing it down with cold spring water from the lower slopes.  I stand up and start getting ready. 

A wind comes down the glacial valley from thirteen thousand feet and chills me.  Despite the physical discomfort, it feels good, or at least right.

The Ritual

I pull out my rod, closely inspecting and aligning the four pieces as I assemble it.  Shaking the handle, I watch the energy dissipate down the rod like a fencer preparing for a bout. 

I pull out my reel, attach it to the rod handle, and begin to string the line along the length of the rod.  With each narrowing loop the line passes through, I can feel the troubles left behind.  

The student debt, the house payment for the house that hasn’t sold yet, the crisis of faith in my supposed calling, I feel them each dropping off.  The only stress left by the time I have attached the leader is the loss of my daughter. 

Yet, hers is a welcomed sadness.  I didn’t come to forget her loss, but to be quiet with it – alone. 

Opening my flybox, I pull out a dry-fly – the elk hair caddis.  I know I’ll probably have better success with a olive bed-head wooly bugger – I almost always do.  Nonetheless, part of the ritual is the dry-fly.  

The First Cast

I hop out onto a large rock at the edge of the shallows.  Gently moving my right arm back and forth, I let out line.  After a half-dozen or so passes, I gently place the line down on the water’s surface where a trout might be cruising.

Island Lake, Wind River Range, WY.  Source: USFS

The tuft of elk-hair floats serenely on the water.  I give all my focus to watching the water and the fly.  It gently sways on the water as the wind moves over the lake.  I slowly gather line in my left hand. 

Feeling myself tense, I am fully in the moment with the water, the invisible fish, the mountain, and the sky.  I am nowhere else, neither in time or place.  I am fully present on the lake, on the mountain, watching this stupid fly. 

Now We are Fly Fishing

Nothing happens.  I try several more casts without any luck. I start to think about what fly I should try next: parachute adams, royal wulff, beadhead woolly bugger. 

At that moment, I hear soft “plop” from the lake.  The fly is no longer visible. I raise my right arm quickly, trying to set the hook, the fly emerges quickly from under the water – without a fish.  

Fly fishing is ritual mindfulness.  It seems that as soon as the future starts to steal your consciousness away, the fish and the water remind you of the pressing need of the present. 

The trout, the line, the rod, the fly, the wind all demand such attention that you cannot enjoy fly-fishing without being a 100% present.  When the mind wanders, you inevitably miss a strike, or catch your fly in stream-side brush.

Only 100% of you will suffice when fly – fishing.  No less.

Heed the Lesson

I take the hint.  I stop casting.  Taking the elk-hair caddis in my fingers, I cut the leader and place the fly back into my box.  I take out a woolly bugger and carefully attach it to the leader.  After checking its fastness, I hop back to shore.

I walk to the other side of the lake where the mountainside plunges in the water with rocky abandon.  Balancing on loose rock and snow I manage to dance over to a sturdy ledge which gives me lateral access to a cliffshelf.  Beginning to swing my arm, I let out the line again. 

I hear the bedhead plop softly into the water in front of the cliff as I finish the cast.  Waiting 20 seconds, I let it sink deeper into the water. 

I begin a slow figure of eight retrieval of the streamer.  The line gently wrapping around the fingers of my left my hand.  Suddenly, the line tightens and the tip of the rod bends sharply.  

The Fish

I firmly and quickly raise my right arm, I can feel the hook set well.  The fish cuts to the left, the line singing as it splices the water’s surface.  I can feel the strength of the fish – normally fish this high are small and hungry, barely fighting. 

I slowly give the fish some line, keeping the rod bent in the process.  The fish takes the extra line and jumps.  It sparkles in the alpine sun as it sails 18 inches about the water’s surface.  

I let the fish play for another 30 seconds or so and the resistance slackens.  I begin to retrieve the line again.  The fish protests, but with less vigor.  The distance between him and I narrows.  Soon, he is next to the ledge I am standing on, inches below surface.  A beautiful fish.  

With my left hand keeping the line taut, I extract him from the water with my right.  Placing him on the granite ledge and holding him in place with my left hand which still has the rod, I deftly grab my needle drivers and thread them into his mouth, catching hold of the hook and removing it.  

I gently place him back in the water and watch him swim off into the deep, clear water.  “That was a nice fish,” I say out loud. Only the wind responds.

The Moment

I clamber off the the ledge and over to my pack. Laying my rod against the pack, I sit down.  I take in the mountainside, the lake, the upper coulee in the distance. Snow still hangs there in the shade.

I watch a shadow of a cloud glide across glacier-scoured granite mountainside, a golden eagle rides a thermal.  The cloud reminds me of my daughter and how I would have like to have shared these moments with her.

I welcome the stinging sadness and let myself feel it fully.  It feels needed.  I breath the thin air deeply as a few tears form.  Not a wailing, gnashing of teeth kind of pain, just a simple reminder of a love lost – yet still here.  

I stop short of mourning the high country fishing trips we never had.  Because we never had them, the future has not yet been and never was.  Hell, she might’ve hated fishing, I don’t know.  But it is nice to sit and pretend we would have done this together. 

So, I sit for a while longer, feeling her fully.  100% present in this moment of grief and joy and peace.  For a short time, I am nowhere else. 

My First Death Cafe

It takes the whole of life to learn how to live, and – what will perhaps make you wonder more – it takes the whole of life to learn how to die.

-Seneca

growing closer to loss

Until my wife and I both welcomed our daughter and ushered her out of this world within the span of a month, I had had little personal experience with death or loss.

Roadside Grave, Kinney Rim, WY. Author’s Own Work.

I grew up far from extended family.  I had no close relationships with older adults such as grandparents, and so their deaths did not affect me very strongly.  As such, I had not really observed much death or loss until residency.

Nonetheless, in residency I frequently led end-of-life care and goals of care discussions.  I was good at them, able to connect with families and patients, elicit their values, and move care in the appropriate direction.

I found the discussions gratifying.  It always felt like important work – real doctoring.

In clinic, I felt many of my patients were lost or stuck in regards to their physical and mental health and often life in general.  I did not have an inherent understanding of how people ended up in these states of life-limbo.  Over time, I came to feel that it was related to loss and our relationship to it.

As I did not have much personal experience with loss, I took to reading about it.  In particular, The Illness Narratives gave me a framework about how to understand the nature of repetitive loss and eventual death as a clinician.  This clinical research was a helpful backstop when faced with confronting death in my own family.  At least I had a framework.

death becomes him

Moreover, because of my clinical background in loss and death, the behavior and lack of acumen of my partners shocked me.  Compassionate and attentive clinicians with their patients, they were emotional ogres when it came to a fellow clinician.  I have since learned this is unfortunately fairly common in medical culture.

Our wider culture’s inability to engage with death shocked me less, but was still striking.  When grieving, even well-meaning people mostly just want you to feel better.  Your grief is disquieting and the assumption is that if they say something to make you feel better, everything will be ok.

Announcement:  When someone is grieving, everything is not okay.   Yet, that is natural.  That person’s world has been unmade, and they are relearning how to live in it.  It is supposed to be difficult and sad – that’s normal.  As a bystander, this is what you need to know.

My experience led me to seek out venues of personal healing, but also how to engage with the wider world about death.  We need to be better at this.  Our culture cannot afford – both materially and spiritually – to continue to view death as as optional – something to avoid. This is how I stumbled upon Death Cafes.

Death Cafes are simply groups of people who want to talk about dying, death, and life – to demystify the experience.  The movement started in 2011 in Britain and has spread around the world.

my first death cafe

So, I found a Death Cafe in my area and decided to go, not entirely knowing what to expect.  My wife agreed to come with me, though she was a little reticent.  Of course, we showed up late, sliding into the circle surreptitiously.

The circle was bigger than expected, 20-30 people.  A few were veterans, a few more had come only for the second time, and many more were first timers like us.  It was heartening to see it so well attended.  People were from their early 20s to their 80s.  The group was overwhelmingly female.

We went around the circle introducing ourselves and our reason for attending.  One man had simply been sitting in the area of the bookstore the group reserved and decided to stay.  Others were wrestling with their own grief, their own mortality, or simply had a desire to have a discussion about death openly and freely.

GINA

After introductions, one young woman erupted with emotion.  She had suddenly lost her father to cancer about 18 months prior.  They had been extremely close, he had been her rudder in the world.

Her grief and anger and a sense of injustice continued to possess her.   She was trying to learn how to evolve.  Her family were unequipped to have these discussions, so she was looking elsewhere.

She came to a room full of strangers, looking for answers.  It was a courageous act, to engage with her emotions and death openly and honestly.  It was plain to see she was struggling.  The group did not recoil.  Collectively, everyone leaned in, nodded, and listened.

As someone who has been through a great grief recently, it is hard to overstate how rare this experience is in modern America – to have strangers engage in your grief with you, without discomfort.  It is otherworldly, almost magical, especially in contrast to everyday life.  Even 10 years ago, this space did not exist.

the flow of conversation

The rest of the conversation flowed in an easy back and forth, remarkably civil and deep given the current public discourse in this country.

We touched on differences in how men and women deal with death and emotions, how you go about buying urns before you die, the fear of death and dying, and impermanence in general.  We came back to Gina’s grief once or twice.

In the end, we went back around the circle and people where able to express one or two thoughts they had not had the chance to express during the open discussion.  Overwhelmingly, people were simply thankful for everyone showing up, sharing, and being open.

My wife and I left feeling remarkable uplifted, even more alive.  It had been intense, Death Cafes are generally held monthly, and I am not sure we could handle them more frequently.  Nonetheless, the experience had been life affirming, not morbid in the least.

everything gets a return

The great Stoic philosophers had a phrase for this: Memento Mori.  Seneca and others recommended a daily practice or remembering and accepting death as a way to remind ourselves of our wondrously short lives and that nothing is guaranteed.

They argued the practice increased happiness because to helped us live our lives more fully.  I have not adopted the daily practice, but if it is anything like what experienced after my first Death Cafe, I think they were on to something.

Our culture is out of touch with Death.  We close it up, hide it, shaming public expressions of grief.  The daily practice of remembering and accepting death is a big ask in our current culture.

However, an open space to confront death in community may be a good place start.  This is what Death Cafes provide, a welcoming community of people on different stages of the journey towards knowing and accepting to death.  The experience was remarkably life affirming – I know we’ll be back.

Questions?  Thoughts?  Please comment below.

Palliative Care Consult: Dad

Patient advocate – new father

My daughter’s neonatologist and I stood close facing each other, cramped at the foot of my daughter’s isolette in the NICU.  She was only 2 days old and on a ventilator.  He had just finished updating me on her bilirubin and other labs, as well as her imaging.   I honestly didn’t care.

Most physician parents would have wanted to know all the data, all the lab values, etc.  I had complete confidence in a level 3 NICU to replete potassium, manage a ventilator, and correct neonatal jaundice.  All routine things in a NICU.

I was steeling myself for a more difficult conversation, one I had had dozens of time before.  But before, the conversation was about a patient, someone behind the emotionally safe distance of the doctor-patient relationship. This time, the end-of-life discussion was for my own daughter.

I felt I could broach this subject with our neonatologist early.  He had told my wife and me that our perfect, beautiful, newborn daughter was in fact not healthy.  He had done it in a straightforward and kind way.

After the first two or three questions from my wife he stopped her and said, “Those are good questions.  We will answer them as we can, but right now, you need to go fall in love with your daughter.” So we went to her bedside and did just that.

So, I stood in front the neonatologist, both a father and a physician.  I started to speak.

Jebediah’s Story

As a clinician, you never know when you are going to stumble across a gift that a patient has given you.  Sometimes they are obvious, even physical.  Other times the gift is knowledge and insight you would never have gained if not for the intimacy of caring for them.

Jeb gave me and my wife one such gift, and in a round about way, our daughter as well.   Jeb was a very sick toddler who was frequently in and out of the pediatric hospital I trained in.  He had been born very early, a twin.  His brother, Alex, had fared better than him.  Alex had developmental delay, but otherwise a fairly healthy 2 year old.

Jeb was a very cute kid.  His language skills were not well developed for his age.  His only verbal communication was limited to blowing raspberries in various tones that correlated to his mood.

As residents, we would walk into the rooms gowned in protective clothing.  Once into Jeb’s room, we would turn to see Jeb standing in the hospital crib, nasal canula secured to his nose, belly protruding outwards, blowing raspberries to get our attention.  Heart=melted, every time.

Jeb had bronchopulmonary dysplasia (poorly developed lungs as a result of his premature birth), he was chronically oxygen.  Additionally, he had Hirshsprung’s Disease (improper nerve development in the colon), this could lead to bouts of constipation and bloating so severe that it would compromise his lung function.

Jeb’s illness put an extreme burden on his mother.  She was a single parent who lived about 90 minutes from the hospital in a small town.  Any slight cold or virus would send Jeb into the hospital.  His mother did all she could for him.  His health was so fragile that she lived her life around him and his illnesses.

During one of his hospitalizations, Alex was with him.  Alex had a small tricycle that he was riding around in the hospital room. He rode it up to all the hospital staff, stopped, smiled and waved.  He occasionally even spit out a few words. His mom never took her eyes or attention off of Jeb.

In that moment, I saw all the sacrifices this mother was making for Jeb.  Time, money, energy, sleep.  Also, I could see she was sacrificing Alex’s share to Jeb.

Alex was still in need of extra support and therapy, yet compared to his brother, was the picture of health. Even if a mother’s love is infinite, nothing else in this world is.  At some point, she had to take from Alex to give to Jeb.

Jeb was so sick.  His lungs weren’t going to “heal,” this is the way they were.  The airways would get bigger, but he would never have healthy lungs.  His colon would never develop the nerve endings that it lacked.  I left the hospital that day a little devastated.

I couldn’t get over the image of Alex, who needed so much, being ignored because his brother needed so much more.  The collateral damage Jeb’s health was causing seemed obvious.  I even talked to his pulmonogist at one point, whose statement, “Jeb is a very sick, complicated case,” seemed to say it all.

Jeb wasn’t going to get better, we were just “managing” his illnesses.  All the doctors knew, Jeb would probably at some point die of the complications of his birth. Indeed, about a year later, he did succumb to complications of a respiratory infection.

This does not mean Jeb’s life did not have purpose and was not worth living. On the contrary, Jeb clearly brought a great deal of joy to those around him.  However, that joy came at a very real human cost, to both his mother and brother.  Like so many other parts of life, there is no such thing as a free lunch.

Jeb’s gift

That night, I staggered into the house, emotionally punch-drunk from the existential quandaries I had dissected during my shift.  I laid down next to my wife in our bed and told her Jeb’s story.

We laid on our backs staring at the dark ceiling.  I asked my wife, “What if we have a baby like Jeb?  Are we going to hook our child up to machines and oxygen, knowing what we know?  Is any life for our child worth any sacrifice? Both our child’s and ours?”

We discussed this at length.  My wife cried and hugged me.  In the end, she said, “No, if we have a child like Jeb, we will love him or her sooo much, and let him or her go.  That is no life for our baby.”  We hugged again, rolled over, and drifted off to an unnerved sleep.

Neither of us had any inkling that 3 years later we would be sitting next our daughter’s bedside in NICU and thanking Jeb for that conversation.  We continue to be so grateful for the gift he gave us.

back in the nicu

Back the foot of our daughter’s isolette, I started the conversation with our neonatologist.

I began, “I know we still don’t know much.  But, you don’t have to do what we do for a very long to see a lot of therapeutic creep.  More than anything, I am worried about her ending up on long term ventilation, with a G-tube, never being able to live without a machine.”

Continuing, “Again, I know we are waiting for more information from tests and imaging to see if we get more answers.  I also know a significant chance exists that we will have to make a decision without a discrete answer.  As an experienced physician you get a feeling, a gut feeling, about how things are going to turn out.  That might be the best information we get.  I just ask you to tell us when you have that feeling, because we are ready to have the conversation.”

His response was measured, but honest, “I am not there yet, but I am glad you are bringing this up.  Certainly, the possibility of tubes and long term ventilation are real.  I want to know I agree with you.  Just because we can do something, doesn’t mean we should.  I will let you know when we have to have that conversation.”

being your daughter’s palliative care doctor

That was my first, but not last, instance of feeling like I was my daughter’s palliative care consult.  I spent a good bit of our time in the NICU having similar discussions with nurses and, eventually, the hospice team.  Frequently, I felt like I was in between two worlds.

I was translating our values and emotional state into medical speak, because I knew that was the best way to advocate for my daughter.  Code-switching back and forth between the human and medical seems to be beyond many clinicians.

It took a great deal of effort to be both a physician and father in those days. Yet, it was a rare ability and gift I was able to offer my daughter.  I want to give a shout out to my counselor for teaching me to view it that way, instead of the burden I had felt it to be.

In the end, when we said we wanted to take our daughter home to pass, it was a groundbreaking request for that hospital.  It had never been done. Nonetheless, our neonatologist and the hospice team were amazing.

By Zerbey, CC BY-SA 3.0, Photo by Chris Horry at Arnold Palmer Hospital in Orlando, Florida, November 2002. Source Wikimedia Commons

My wife and I decided that we didn’t want 100% of our daughter’s life to have been lived in a windowless NICU.  At one point, I said that if we could at least get her into the parking lot, where she could feel the sun, I would have been satisfied.

Yet, we were able to take her on a 45 minute drive through the mountains to our home.  Our neonatologist came on his own time, the one who extubated and pronounced her.

We sat in the dappled shade under the pines, holding our daughter for the first time without the ET tube or ventilator to worry us.  He told that us that some of the nurses had asked him if we were doing the right thing.

He had apparently told them, “This is the ONLY right thing.”

Horseshoes and Hand Grenades

Reason for visit: cough – follow up from urgent care

6 weeks from the end of my intern year, I met B first time.  I walked into the room and saw a healthy appearing 33 year old, dressed in the uniform of kitchen staff from my training hospital .

B had visited a local urgent care twice in the last month for a cough and shortness of breath.  He received azithromycin and a cough suppressant both times.  The second time, the urgent care doctor referred him to the residency clinic so that he could have a more thorough evaluation if it hadn’t resolved.  The cough and shortness of breath had not improved.

I proceeded to do my normal initial patient visit history and physical.  B had a couple of interesting past medical history items.  He was being treated for glaucoma and had had his spleen removed as a child for Idiopathic Thrombocytopenic Purpura.  Interesting, but nothing directly related to his chief complaint.  He denied any history of asthma or other chronic lung problems.

History of present illness

Me:  What has been going with your cough and breathing?

B:  For the past few weeks, I have had an annoying cough and feel increasingly winded doing simple activity.

Me:  Can you describe how winded you feel?

B: well, like on my way over here, I had to stop and rest coming up the stairs in this building.

Now, my clinic rooms were only on the second floor.  I checked his vital signs again: heart rate, respiratory rate, and oxygen were normal.  His lungs were clear, his heart sounds were normal.

An otherwise healthy 33 year old should be able to walk up a flight of stairs, even with bronchitis.  Maybe not with a significant pneumonia, but his vitals didn’t suggest that.

a closer look

I turned and just looked at B.  Up and down, looking for some other clue in his visage that might point me in a direction.  He had short cropped sandy-blond hair, wearing wire-rimmed glasses.  He looked comfortable.  His skin was a bit pale, not hemorrhaging GI bleed anemic pale, but enough to favor a portrait of a Victorian-era consumptive.

I didn’t know much as an intern, but I had learned people who get rare diseases tend get other rare diseases.  I was nonplussed.  Other than the fact that his story just made me worry, I didn’t have a direct line of inquiry.  Just to give myself some time to think, I had my nurse take him up the stairs with a pulse ox, see if that pointed anywhere.

He started up the stairs, oxygen stayed steady, but within a few steps, his pulse shot up to 120.  Something isn’t right here.  I talked to my faculty (still an intern – have to precept every case).  My thought process had frozen, I knew something wasn’t right, but what other tools do I have in clinic?  She helped me out, “how about a chest x-ray and an EKG?”

ORDERs: CXR and EKG

His chest x-ray wasn’t very impressive. I thought maybe his heart seemed a little big for a 33 year old, but the radiologist wasn’t impressed.  His EKG was a different story.

EKG didn’t show any ischemic changes, he had sinus rhythm and no conduction problems.  Those were pretty much the only normal parts.

Axis was confusing, but seemed rightward, P waves were huge, T waves were either inverted or gigantic. He didn’t have obvious hypertrophy, but voltage on his precordial leads seemed moderately elevated. To this day, it was the most bizarre EKG I have seen.  I wish I had a copy.

admit to hospital

I went into the exam room.

“B,” I said, “There is something not right with your EKG.  I am not sure what it means.  It doesn’t look like a heart attack or anything like that, but I think we need to get you to the hospital to figure out is going on.”

B seemed neither relieved nor worried, “Okay.”

I called my fellow on-call intern and the chief resident.  Presented the case and arranged for B to admitted to the hospital.  The work up began in earnest.  Most favored a pulmonary embolus as the cause of B’s symptoms.  The team ordered the requisite CT Angiogram of the chest.  The read came back.

NO pulmonary emboli identified.  pulmonary arterial trunk measures 4.5 cm, highly concerning for severe pulmonary hypertension.

The echocardiogram the next day confirmed that B did indeed have severe, end-stage pulmonary hypertension (PH).  Right ventricular hypertrophy. The cardiologist and pulmonologist were called in.  The work up provided no treatable cause of B’s PH.  The label became “Idiopathic,” which is doctorspeak for “we don’t know.

Henry Vandyke Carter [Public domain], via Wikimedia Commons
When the cause of a problem is unknown, treating it very effectively becomes rather difficult.  The cardiologist scheduled a heart catheterization for an arterial dilation test.  This was to determine which therapy might be appropriate.

His pressures were too high to complete the test safely.  The cardiologist aborted the procedure.  He arranged transport to the nearest university medical center.  B needed to be on a transplant list.  33 years old.

good catch, man!

My classmates congratulated me on my “good catch.”  A well appearing man walked into my clinic with a rather benign complaint and I started a work up that caught a zebra.  We rapidly identified a diagnosis, involved the correct specialists and provided, I do believe, excellent care.

I went to see B in the hospital the day before his transfer out of the city I trained in.  He was cautiously optimistic and glad to have an answer and to be getting to where he needed to be.   He thanked me.

I asked him if he had family coming.  He said his parents would meet him at the university hospital and his sister was flying in from out of state.

“That’s good,” I reflected, “Family is important when you are going through something like this.” We shook hands and said goodbye.

Nothing puts swagger in an intern’s step like catching a zebra where one least expects it.  I felt pretty damn good.

when your best isn’t good enough

One of my favorite things about traveling around rural parts of the country is picking up rural aphorisms.  One that I grew up on in my household was, “Close only counts in horseshoes and hand grenades.”

Two weeks after B left our care and hospital, I went into his chart to show a colleague his EKG.  The computer attacked my vision with the notice:

YOU ARE ENTERING A DECEASED PATIENTS CHART. 

I sat back stunned.  We came close, but medicine isn’t horseshoes or hand grenades.

Later that day, I talked with my fellow intern who cared for B in the hospital.  I let him know the news, he had a similar reaction.  We had felt so good about the care we had provided to B.  We were at the top of our intern game and yet, he died.

humility is a punch to the gut

Did we do anything wrong?  I certainly don’t think so.  Diagnosis, treatment, transport to appropriate care in a timely manner.  All done better than average, I would argue.  We were proud, especially for a team of family medicine residents and interns.

By Rama – Own work, CC BY-SA 2.0 fr, https://commons.wikimedia.org/w/index.php?curid=3632261

By the stars aligning, my fellow intern’s significant other was an ICU nurse who moonlit in the university ICU.  On her next shift, she asked around.  It turns out B was admitted there, kept in the ICU for monitoring.  One night, shortly after his arrival, he went into ventricular tachycardia, an unstable cardiac rhythm.

The ICU team attempted to revive him for 2 hours through the use of every life saving medication and procedure they had.  Codes are normally called after 30-45 minutes.  He was 33 years old.

reconciling polar opposites

Sitting in my bed one night, staring at the ceiling, I talked about B’s death with my wife.  I don’t talk about patients with my wife often.  So, when I do, she knows the patient affected me deeply.

Usually, when someone dies or there is a bad outcome, I am able to derive a lesson for honing my art.  Next time, I will do XYZ, and it’ll go better.  I make sense of the loss through striving for improvement.  It helps add meaning.

What happens when you did better than would be expected and it still goes south?  “Nothing we could have done better, that is just life in medicine” seemed like a poor salve for my wounds.

Overtime, I thought back to the last conversation I had with B.  His family was coming to see him, they new the diagnosis by the time he died.  The grief doesn’t disappear because of knowledge, but every removed uncertainty helps, I think.

Most importantly, I believe they had a chance to see their son and brother before he might have suddenly died of a cardiac arrest.  That was a gift I gave him and his family: some answers, and some time.  We can’t always save, but we can always heal.

the dead are never gone

Having now gone through my own loss, my perspective on B’s story has evolved.  Families carry the care and comfort we give to patients who die, just as they carry the memories and lessons of their loved one.   This can be a blessing, and it can be a burden.

If we can give patient’s families memories that their loved one’s time under our care was full of support, strength, and understanding – it can be a great gift.   It is invaluable in their grief and healing.

Anger is an all too easy trap for grief.  It is a natural and normal part of the process, but it can be seductive.  Anger is often easier to feel than the unending sadness or permanent loss. Anything we do as healers that makes the transition from anger to the other parts of grief easier, is of immeasurable value to patients and their families.

I now know this all too personally.  Death is not an option, only a matter of time.  Yet, we as human beings, and especially as physicians, have the power to meet it in different ways.  We can meet death with love and the support of family and community, it can strengthen the bonds between those who are left behind.

As physicians, we have the power to facilitate that journey.  It is a terrifying journey, people need guides.  We have that power, if we choose to use it.

If we choose to help people meet death on their own terms, we choose to help them know life in the richest way possible.

A Birthday without the Birthday Girl

Wandering the Desert for A Year

landscape sand desert dune wind dry natural park outdoors dunes national shadows ripples grassland hot plateau habitat ecosystem sahara wadi death valley landform erg natural environment geographical feature aeolian landform

Death Valley Sand Dunes – Public Domain

The memories of a child lost so soon after birth are the definition of bittersweet.   A birthday is supposedly important, a time to celebrate.  Everyone else seems to think so.  People have sent us birthday cards, notes, texts, things to let us know they are thinking about us.  They are all very kind and sweet.

a day to remember

However, everyday for the last year has been a day of remembrance for my wife and I.  For her especially, there is someone palpably missing in the ether.  She feels it deeply, in a corporeal way.

In beginning, the world seemed a darker place.  Colors had less shine and everything was off kilter.  I notice those thing less nowadays.  Yet, I still haven’t decided if that means that things are brightening, or I am just forgetting what the world was like before our daughter left?

the sun came up today, like it usually does.

In the end, today is just another day without her for my wife and I.  The difference is that other people are thinking about her and her absence.  They are letting us know they remember.  Again, it is bittersweet.

The notes and cards and flowers are a helpful reminder that we are not alone in our grief.  Grief brings a sense of emotional solitude, so it is nice to have that reminder of others.

On the other hand, the notes are also reminders that my wife and I share a solitude in our grief.  We don’t get to take a day off.  We can’t choose to get off the grief train for a while and rest.  We are always there.  And, as far as we can tell, we aren’t going anywhere.

life in the hessian crucible of grief

Grief is a crucible.  The forces that it brings to bear on a person are immense.  Yet, crucibles are amazing tools for reshaping things.  Metals are melted, combined with strong reagents.  In the end something, hopefully stronger, emerges at the end of reaction.

Chemical reactions can go poorly.  Reagents in wrong amounts, too much heat, rapid changes in temperatures, etc.  These can force the reaction to go terribly, terribly wrong.  On the hand, the reaction can get stuck in a chemical purgatory.  The reaction has transmuted the initial components, but not delivered the final product.

The same is true for grief, it defines us for a time.  We must let melt into our identity, where it can combine with the pre-existing pieces of our being.  However, we must be careful.  If we hurry it, if we had too much pressure too soon, things can go very, very poorly.  If we ignore it, if we do not tend it, we can become moored in a netherworld.  There we may stay, beyond the reach of who we once were, but not delivered into we might have become.

to live a life in 3 weeks

Over the next three weeks, my wife and I will live through the entirety of our daughter’s life, one year removed.  It seems a strange twist of fate that it is an entire life.  Yet it is.  On a long enough time-line, 3 weeks and 90 years are indistinguishable.  They are equal in their measure – lifetimes.

And her presence was immense for someone who couldn’t even muster 5 pounds.  As measured by the emails, the cards, and the dozens of people who travelled from around the country to meet her during her brief time on this plane, she was mighty.

So, my wife and I enter the bittersweet season of her life.  Three weeks, forever marking October in our minds.  We walk along in her shadow, remember the beauty and the loss.  For you cannot have without the other.  Grief is the shadow that beauty and love cast when they are lost.  Yet, I would rather live in a world of shadows than one without light.

 

Tom Petty was wrong, it’s not the waiting, it’s the “being with” that’s the hardest part.

Dr. Sanders had been dying a long time. Bald and infected, quiet and cachectic, he was getting his life in order. We were friends. He was dying with a calm strength, as if his dying were part of his life. I was  beginning to love him. I began to avoid going into his room. 

"I understand," he said, "it's the hardest thing we ever do, to be a doctor for the dying." 

Talking about medicine, I told him with bitterness about my growing cynicism about what I could do, and he said, "No, we don't cure. I never bought that either. I went through the same cynicism— all that training, and then this helplessness. And yet, in spite of all our doubt, we can give something. Not cure, no. What sustains us is when we find a way to be compassionate, to love. And the most loving thing we do is to be with a patient, like you are being with me."

-Samuel Shem, House of God
high plains doctoring

The other day I was out on the High Plains, doctoring.  In this particular location, the ED isn’t very busy, so I also cover a walk-in clinic at the same time.  Usually, this is standard urgent care type stuff.: kids with fevers, ear infections, sinus infections, headaches, bronchitis.  Occasionally, I get a follow up from some other practitioner and I have to piece together what was going on, what the plan was, and what is going on now.

I looked at the schedule: follow up rash – not getting better.

This particular patient received one opiate medication as a refill accidentally instead of her usual one and she had developed hives from it (a known personal reaction, apparently).  She completed course of montelukast, prednisone, and H2 blocker about 10 days ago and got her opiates straightened out.  Initially, she improved, but once she finished the prednisone, she continued to get daily itchy, red, urticarial (hive) rash. It was temporary with no discernable trigger. She did not have a rash in the visit.

Normally, this would be pretty robust hive regimen and, for a single exposure, should have taken care of it.  She had no known other exposures or new foods/soaps etc.  So, I asked her about stress.  I have already seen a few cases of stress urticaria in my short career.  People are generally much more willing to talk about stress in their lives than their “mental health” or “anxiety.”

Critical Access Hospital Medicine Truth #1: You are more likely to find artisanal kimchi on the High Plains than adequate mental health resources.

And the flood burst forth!  As it happens, she was nearing the 1 year anniversary of the murder of her grandson with whom she was very close and whom she raised as her own child.  On top of that, news was slowly coming to her about when the trial would start and, like all of these bureaucratic occurrences, it was start-stop.

Had she seen or talked to anyone about this over the last year.?

No.

Are interested in counseling?

We discussed places for counseling – there is only one mental health service in this area – an hour away – and they have a bad reputation in this community, so she wasn’t interested.

We discussed a pastor/clergyman, this was a possibility.  Her grandson had been close with a local pastor, I encouraged her to talk to him about her grandson.

Grief is not a disease, it should not be anesthetized away.

And then she began to talk to me about her grandson, she told me stories, what he was like, how he cut his hair.  This is where the “just being with” can be strong medicine.  I cannot do anything to bring her grandson back.  Grief is not a disease, it should not be anesthetized away.  It is a necessary process and part of life.  But it MUST be witnessed.

So, I sat and listened – intently.  I probably didn’t say a true word, just nodded, for at least 5 minutes.  Try truly listening to someone for 5 minutes.  It feels unnatural.  It takes practice and intention.  Doctors are terrible at it – there are studies to prove it.  She cried.  I didn’t try to make her feel better, those who are grieving need to feel the sadness at times.  I was simply being with her while she felt it.

good doctoring can be a drug

After she had told me what she needed to tell me – again, I had never met this woman before – she thanked me for listening.  I recommended she meet with the pastor and talk about her grandson and gave her a prescription of cetirizine, to see if that helped – knowing that what she really needed was more people to bear witness to her grief and help her feel it, in a healthy way.

Today, I was able to be that person, because I don’t have productivity targets, because I am payed by the hour to simply “be” at the hospital and do what must be done.  That is not the norm in our system.

Even in my current situation, it is simply possible.  It is neither encouraged nor supported. For those of us who try to help people heal through our doctoring, that very act of “being with” is now an act of rebellion.  “Being with” ill and suffering people, when done frequently enough is now a fireable offense in the American Hospital-Pharmaceutical Complex – a.k.a.: not meeting productivity.

I emerged from that room cloaked in her grief.  For a short time, I had wandered the wilderness with her.  It felt meaningful and worthwhile; still, I was drained.  I had a moment of gratitude, because I hadn’t had to choose between “falling behind” and “being with.”  I had the time and energy to give to her and gave it freely, not begrudgingly.

Sadly, this is not included in the “standards of care” in clinics around our country.  As I got into my car to start the lonely drive home, I grieved for all people, patients and doctors alike, who are routinely wounded by our system.