30-hour day

I have not written much lately.  I have not done much of anything except work.

As part of my emergency medicine residency, I am required to complete two months of training at the University of Maryland Shock Trauma Center in Baltimore.  I enjoy being back in the city of my graduate school days, but the schedule at Shock is absurd: 80+ hours per week and call shifts in which I remain awake at the hospital–making critical life or death decisions about patient care–for 30 hours straight.  It is brutal.  It is unhealthy for residents.  It is unsafe for patients.  Yet, the culture is one of “It has always been this way.”  That doesn’t mean it should stay this way.

I tell every patient, and am now telling you, that I have often been awake for more than 24 hours when I am trying to figure out how to save a person’s life.  My brain is so tired, I frequently have trouble speaking clearly.  Patients are universally, and justifiably, appalled by this information.  I hope the reader need not require hospitalization, but if you do, ask your doctor for how long she or he has been working on shift.  The answer may not be a comforting one.

Upwards of 250,000 Americans die every year from medical errors.  The medieval, ridiculous, dangerous culture surrounding physician work hours surely is a part of the problem.  Physicians apparently refuse to heal themselves, so it’s up to readers and patients to demand change, to demand well-rested doctors, and to demand oversight and penalties for renegade providers and institutions that push physicians beyond all reason and margins of safety.

Advertisements

Hold a Child

I lost a kid in the ER today.  Only the second one in my career.  Nothing in medicine or in life is more devastating.

I wept as I drove home.  I wept for the girl.  I wept for her parents.  I wept for a fucked up universe in which children die.

Whoever you are, wherever you live or work, whatever your family situation, hold a child today.  Your son or daughter, sullen teen or ebullient toddler, little brother or sister, baby niece or nephew: it doesn’t matter.  If there exists a child in your life who means something to you, tell them so.  Wrap them in your arms, hug them tightly, sit in the sunlight with them.  Say you love them.

Please.  Hold them.

Relay for Life

For those unfamiliar with Relay for Life, it is an American Cancer Society fundraising effort held annually by many cities, towns, and large institutions across the U.S. (and, indeed, the world).  Participants form teams and engage in an all-night walk-a-thon at a local track or gym to raise donations for biomedical cancer research; each team must keep at least one member walking at all times.  I’ve completed a couple of Relays in my life, and in trying to explain to others my reason for participating, I often shared the following experience from my third year of medical school:

I stood nearby as the attending surgeon opened the young man’s abdomen, peered inside, paused momentarily with his head bowed as though in prayer, and then let out a single, emphatic, forlorn, “Damn.”  I looked over the surgeon’s shoulder, and understood his reaction.

Thick, bloody, curd-like tumor encased the young man’s colon, and thousands of satellite lesions, like some morbid imitation of rhinestones, studded his entire abdominal cavity.  “He’s got six weeks, at best,” the surgeon muttered, as a gloom fell over the operating room.  The team resected the patient’s useless, toxic colon and as many of the tiny tumor outcroppings as possible, but the measures were only palliative.  Modern medicine and science had no miracles to offer.

In growing better acquainted with the patient during his post-surgical stay in the ICU, I began to appreciate fully the merciless, indiscriminate reach of cancer.  The young man was in his early 20s, tall and lanky, quiet and shy.  He liked basketball.  He added “sir” and “ma’am” to the few sentences he spoke to the nursing staff.  His family visited daily, wearing flat expressions of silent, stunned shock.  Every time I spoke with him, scenes from the operating room flashed across my mind, and I simply could not accept that the youthful countenance staring back at me had but six weeks to live.

“This isn’t right,” I thought, “Young people shouldn’t die like this.”  But, they do, because of cancer.

I think sometimes of this young man and the life wrested away from him, the future he will never experience.  In his memory, I walk in the Relay.

Dystrophy

I sat down on the pool’s wooden deck and reclined against the surrounding chain-link fence, feeling its sun-warmed metal wires imprint their rhomboid pattern across my bare shoulders as I supervised the campers splashing in the shallow water.  The mid-July atmosphere lay heavy and still over the dusty campground, while far overhead a small airplane with red wings droned lazily across the sky.  Surrounded by empty fields of tallgrass that had turned brittle in the summer heat, the camp pool was an oasis.  A knee laceration suffered the previous day during a particularly competitive volleyball tournament with the other camp counselors had restricted me to the poolside, and I could only watch—and perspire—as the dozens of campers and most of the staff dawdled away the afternoon in refreshing, aquatic amusements.  “Shouldn’t really feel sorry for myself, though,” I murmured as I gazed upon the assortment of wheelchairs, crutches, and leg braces that littered the deck.

Six weeks earlier, I had noticed on a bulletin board at my medical school a recruitment flier calling for volunteers for a youth camp put on by the Oklahoma chapter of the Muscular Dystrophy Association.  According to the flier, the camp takes place every summer, and any child in the state who has muscular dystrophy can attend, free of charge.  Because of the fragile health of the campers, the organization prefers to have medically trained individuals serve as camp counselors.  This year’s session fell perfectly into the narrow slot of vacation days that I had available before the start of my third year of clinical coursework; and using that time to mentor disabled youth seemed a somewhat nobler endeavor than my original plan of backpacking across central Europe.  I emailed the contact person listed on the flier, and after completing an impressively onerous rigmarole of paperwork, liability waivers, and background checks, I received my counselor welcome packet—which, tellingly, included a complimentary 120 ounce water bottle and instructions to pack “enough mosquito repellant to fumigate an entire village.”  Because I had been assigned to lead the preadolescent boys cabin, ages 7-12, my packet also contained a yellow sticky-note with the anonymous, handwritten message, “Heaven help you.”

Back at the poolside, acrid chlorine vapors mixed in the air with the campers’ excited yelps and laughter and with raucous country music blaring from the cheap, crackly speakers nailed to the lifeguard hut.  One of my campers, a seven-year-old boy named Asher, climbed out of the water and tottered over to me.  Asher’s lithe little frame sported an overstuffed, moldy orange life-vest and neon green swim trunks; his smiling, freckled face shone with merriment and with streaks of white sunblock that he had been too impatient to rub in fully.

“Couns’r Ty, can I go on the divin’ board?” he asked politely, though the gleam in his eyes told me he intended to go with or without my permission.

“Sure, Ash, just make sure the lifeguard says it’s okay. I’ll watch from here.”

“Aw’right!” he whooped, revealing a white smile full of gaps from recent baby teeth losses.

I watched as Asher ambled along the deck towards the deep end of the pool.  In his barely containable excitement, he quickened his pace to an open jog, drawing the shrill warning of lifeguards’ whistles.  He grinned sheepishly and reduced his speed just a notch.  To a casual observer, he seemed every bit a normal, vigorous young boy at summer camp.  Subtle findings—enlarged calf muscles and a tiptoed gait—hinted at his grave truth.

Muscular dystrophy refers to a family of genetic diseases caused by mutations in genes related to muscle cell structure and/or function.  They vary widely in severity, epidemiologic distribution, and exact pathophysiologic mechanisms but share a common symptomatology: progressive weakness and degradation of proximal, large muscle groups.  In milder subtypes, the clinical consequences are relatively benign, consisting of difficulty climbing stairs, easy fatigability, etc., and do not substantially affect a patient’s life expectancy or quality of life.  In contrast, the most severe form, Duchenne muscular dystrophy, ranks as possibly the most tragic of the thousands of diseases I’ve studied in medical school.  Because of the specific chromosome carrying the mutated gene, it affects males almost exclusively, but does not manifest immediately after birth.  The boys seem to develop normally, and parents believe they have a healthy, happy young son.  That is, until he starts to lag behind his peers when running on the playground at preschool; until he begins to stumble and fall more frequently than can be explained by usual boyhood clumsiness; until they take him to their pediatrician, who refers them to a neurologist, who tells them the terrible news.  Their precious little boy has an incurable disease in which the muscles of his arms, legs, heart, and diaphragm will steadily and inexorably disintegrate, replaced by useless fibrous tissue.  In his early childhood, his leg muscles will swell noticeably and force him to walk on his tiptoes; by age 8 or 9, he’ll require some sort of ambulatory assist device; before puberty, he’ll be in a wheelchair; by his mid-teens, he’ll likely need a ventilator; and by 20, he’ll die from heart failure and/or repeated respiratory infections.  Throughout, his cognition will remain unimpaired, leaving him fully cognizant of his condition, its relentless course, and its ultimate conclusion.

Ash suddenly tripped on a loose plank projecting from the deck.  He crashed forward onto his arms and chest, and lay prone for a moment to recover.  Among the very few things to upset Asher was receiving immediate and overly sentimental aid from people who, presuming him frail and incapable, rushed in to save him from any stumble; he was fiercely independent.  Having learned this lesson firsthand on the first day of camp, I made no move to help him.  Instead, I watched as he slowly and methodically raised himself back to his feet: placing his hands far in front of his body and steadying his legs widely beneath him, creating a sort of tripod, and then walking his hands backwards along the ground and up his legs to push his trunk into a vertical position.   “My god…” I whispered.  It was the Gowers maneuver, a classic sign of Duchenne muscular dystrophy.  I had only ever seen it in the safe, sterile pages of neurology textbooks; now it was here, tangible, in the copper-tan body of a cheerful and intelligent young lad whose continual joking, pranks, and unfettered vivacity filled our cabin nightly with laughter.  Behind dark sunglasses, tears welled in my eyes.  A minute change in one or two letters among the six billion characters in Asher’s DNA had condemned his bubbly step to a premature end, while the rest of us blithely walk on.

I looked from Asher to the other campers.  They shared his fate.  “Damn it,” I muttered with a cold vehemence that shook my chest, “God damn it.”  Can’t scientists hurry up and cure this disease? Fuck it, why does the disease even happen?  If a loving, omnipotent god really does exist, I’d like to hear the sick bastard’s reasons for doing this to innocent children.  The tears flowed freely now, merging with the sweat on my face to produce a briny mixture that ran across my lips.

Asher arrived at the diving board.  His left shoulder was slightly abraded from the earlier tumble.  With the help of a lifeguard, he scrabbled out onto the white platform and, grinning and giggling, surveyed the world around him.  Disney-themed beach towels hung on the fence and swayed gently in a weak breeze that had begun to sir.  A chorus of cicadas buzzed from a nearby fishing pond.  The red-winged airplane was still moving slowly overhead.  The rich loamy odor of clay soil, weird chemical fumes of sunblock, and sweet scent of spilled fruit punch filled the air.  Alternating shouts of “Marco” and “Polo” arose from the younger campers, while the older ones lazed and talked and flirted with each other at the pool’s edge.  Sunlight glinted off the steel rims of the parked wheelchairs.  The hydraulic lift that ferried the weaker kids in and out of the water clanked loudly.  Several feet to my left, a late adolescent in the end-stages of disease lay in a mobile hospital bed and breathed noisily through his tracheostomy tube.  Asher’s eyes caught mine.  For an instant, his youthful face looked ancient, resigned, and wise.  He nodded once, as though to say, “It’s okay, Couns’r Ty, I know.”  Then he smiled, stuck out his tongue, gave me two thumbs up, and leapt.

ICU – Inhumane Care Unit

Patients go the ICU to die.  And the deaths they die are truly horrific.  We as doctors and we as society must rethink goals of medicine and goals of life in the modern era.  When we can keep patients “alive” indefinitely on machines, should we?

–♦–

Patient 1.  Her name was Charlotte.  She was an award-winning landscaper and lifelong gardener from Georgia.  Well into her eighties, she had a gentle southern drawl, piercing blue eyes, ramrod straight posture, and a sincere smile.  She loved to read biographies.  Her favorite flower was the British lady orchid.  Prior to developing colon cancer, she had only ever had hypothyroidism; no other medical problems.  When she had originally been diagnosed with cancer 6 months ago, she resisted any treatments, arguing that she had lived a solid life and wished to spend her remaining time outside, in the gardens, where she had lived her entire life.  Her grown children, unable to cope with the prospect of losing their mother, convinced her to undergo chemo, then radiation, and finally surgery.  She was in and out of the hospital environment for months, and I cared for her during her final month–which she spent exclusively in the ICU.  Her surgery went poorly, and she developed respiratory failure, requiring her to be intubated.  No matter what we tried, we could not wean her from the ventilator; her lungs had simply become too weak to function on their own.  This woman, who had spent eight decades breathing deeply the lush fragrances of her parks and gardens, spent her last moments with sterilized oxygen being forced into her lungs by a machine.  On the day before she died, she wrote something on a piece of paper and handed it to me.  It read, “I want to go outside.”  I looked back into her brilliant blue eyes, and nodded.  It took bribery, threats, pleas with her family, and calls to the hospital chief medical officer, but we managed to get her transferred to a chair and wheeled to a private courtyard in the back of the hospital.  She still had the breathing tube in place, and her oxygen levels were continuing to drop, but she could smell the fresh rain-soaked earth and pine needles.  I’ll never forget her face.  Ineffable.  Tears rolled down her cheeks as she squeezed my hand.  She stayed outside until nightfall, until her oxygen levels had fallen so far that she was barely conscious.  We brought her back to the ICU, and she died within an hour.  As I watched her breaths come to an end, I felt such anger at her medical course.  All she had wanted was to be in her gardens at home.  Instead, she got six months of hospitals and one, final evening in a dingy hospital courtyard.

–♦–

Patient 2.  Her name was Margaret.  A 65-year-old smoker and obese diabetic, she predictably suffered a massive heart attack, and during the attempts to repair the arteries of her heart, she sustained a stroke–her fourth in the past year.  Her brain was devastated.  For a week, she lay intubated and sedated in the ICU; and even after she recovered enough neural activity for the breathing tube to be removed, she remained delirious and unable to form complete sentences.  She had wires going into her wrist arteries for continual blood pressure monitoring; she had lines going into the veins in her neck and under her collarbones to measure the pressures in her heart and lungs; she had urinary and fecal catheters placed; she had a feeding tube going into her nose; and she required a face mask for continual oxygen delivery.  Her skin was sallow and sunken, a patchwork of bruises and breakdown from repeated needle sticks for blood labs.  Her adult children watched for days as their mother tossed and turned in her bed and periodically cried out unintelligible monosyllables.  Physically and emotionally exhausted, the family left one afternoon for a quick respite, and in that hour of their absence, their mother died.  Alone, with tubing and IVs sticking in and out of every orifice of her body.  Her last words were a garbled childish plea for “more ginger ale.”  I stood at the foot of the bed and observed as her heart rate on the overhead monitor slowed from 50 to 30 to 10 to 5 to 0–a flat line.  Her head fell slightly to the side, and her breathing, which for days had been labored and coarse, finally ceased.  I placed my stethoscope on her chest.  Silence.

–♦–

These two women died within 24 hours of each other.  Driving home that evening after my shift, I compared them to the woman described in a BBC article who had been diagnosed with terminal cancer and who had chosen to spend the last year of her life not receiving chemotherapy but instead traveling widely throughout the US.  During her travels, she fulfilled many of her personal dreams and wishes, and her final days were filled with memories and friendships and kindness, not with medications and laboratory testing and invasive procedures.  She died well.

I failed my patients.  The US healthcare system, with its blinkered focus on life saving rather than life enrichening, failed them.  Surely they and their families would have preferred a few peaceful and meaningful days, or even hours, at home over their protracted weeks of ICU hell.  Reflecting on these two cases has caused me to reconsider my own end-of-life wishes and those of my patients.  Above all else, I do not want to die in a hospital.  I’d rather live my death fully than die and be artificially sustained in some travesty of “life.”

OB Baptism

My mother tells me I was baptized as an infant.  Sadly, I cannot recall the details of that particular occasion, but I do remember with clarity the baptismal event from my obstetrics (OB) rotation during the third year of medical school.

Together with a classmate and good friend of mine named Bryan, I had been assigned to a week-long stint on the nighttime OB service.  This nocturnal exposure serves purportedly to provide med students with additional opportunities for delivering babies and to teach the students to work with less supervisory oversight than during daytime rotations.  In reality, Bryan and I whiled away our overnight hours by surreptitiously swiping saltine crackers and peanut butter packages from the nursing station, consuming absurd quantities of caffeinated beverages, and trying to appear studious.  Every few hours, a delivery would commence, at which time one of us would accompany the residents to the patient room and “assist” with the birthing procedure; typically, the residents would deliver the baby, and the student would undertake the esteemed and vital task of delivering the placenta.  Crucial as this curricular exercise may seem for the training of physicians who probably will never practice obstetrics, even its scholastic value was eventually exhausted, and Bryan and I began to yearn for slightly more educational experiences during our remaining nights on the service.

The additional instruction we sought came one night in the form of an emergency Cesarean section due to fetal distress.  Because Bryan had already participated in three deliveries that night, I volunteered to take the case.  When the external heart monitors began to show dangerous decelerations of the fetus’s heart rate, the team decided to rush the pregnant woman to the OR for a “crash C-section.”  Imagining dramatic, cinematic shots of me running down the corridor while shouting commands and saving lives, I hurried after them.  After locating sterile gloves, protective shoe covers, hairnet, surgical gown, and goggles; after getting lost in search of the operating room; and after contaminating myself at least four times while scrubbing my hands, I finally entered the OR ready to assume the customary med student role of standing in awkward proximity to residents and retracting abdominal fat.  In a curious twist of fate, no residents were available to participate in the surgery, leaving only the surgeon, the OR nurse, and me in the room.  As such, I was in a prime position for the events that ensued.

“Stand over there, student,” the surgeon ordered, pointing emphatically with forceps to a position for me on the other side of the operating table.  He then made a lower abdominal incision on the patient to reveal her gravid uterus.  An enormous, tense, reddish balloon, the uterus seemed to fill the woman’s entire pelvis and abdomen, and I could appreciate that it was under extreme pressure from polyhydramnios, an abnormal buildup of the amniotic fluid that usually circulates within the uterus to provide a protective environment for the developing fetus.  As the surgeon placed his scalpel for a low transverse hysterotomy, the type of incision used to open the uterus in order to extract the fetus, I felt a premonition of doom and began to back slowly away from the table.  Too slowly, as it were.

Scarcely had the scalpel blade made its mark when, like a perverse version of Old Faithful, the woman’s uterus spewed forth a stream of amniotic fluid, with my chest as the direct target.  Staggering backwards under the force of the fluid, I cried out in shock as the deluge instantly soaked through my operating gown, my scrubs, and my undershirt, splashed up under my mask onto my face, saturated my underwear, and ran down my legs into my shoes.  The eruption ended as abruptly as it had begun, and for a few seconds, the only sounds in the room were the droplets falling off of me onto the floor and the cries of the newborn baby that had been handed over to the neonatology team.  Stunned and somewhat nauseated, I looked up at the surgeon and asked, “Sir, with due respect, may I go change clothes?”  He laid down his operating instruments, looked squarely into my eyes, flashed a malevolent and wicked smile, and replied, “Absolutely not.  You have been OB baptized.”

For the next ten minutes, my wet feet squelching in my shoes each time I shifted my weight and my body becoming increasingly hypothermic as the amniotic fluid evaporated from my skin, I stood next to the operating table as the surgeon closed the incision sites and completed the cesarean procedure.  Four-letter words probably not befitting a person so recently sanctified ran through my mind until the surgeon, with another morbid chuckle, finally permitted me to leave.  I fled to the locker room where, though nothing could be done for my soaked shoes, I quickly changed scrubs and dropped my saturated undergarments into a nearby biomedical waste container.

I then returned to the student quarters, where I found Bryan.  As I entered the room, he cheerfully asked, “So, how did it go? Did you learn anything?”  “My dear friend,” I replied, “It was a religious experience.”

Martha

The last time I saw Martha was on a blustery November afternoon, when her eighty-year-old emaciated body lay bedridden, wheezing, and curled in the fetal position, a tiny sickly lump of human flesh with wiry unwashed grey hair, eyes squeezed tightly shut, and a wrinkled face contorted in pain or despair or both.  A few days later, she died, and a then second-year medical student was forced to cope with the first real loss in his life.

Martha and I had first met four years earlier when, during a religious period in my life, I responded to a church bulletin asking for volunteers to visit this elderly, widowed German lady who was confined to nursing care and who could not attend worship services.  Nearly every Saturday afternoon thereafter, she and I would meet for an hour of snacks and pleasant conversation, and I grew to know her well.  In the late 1940s, after having lost her entire family to Nazi persecution, she had immigrated to the U.S. as the new bride of a dashing young Air Force captain.  Their marriage was long and happy, and after her husband died, she remained fiercely patriotic, decorating her nursing home bedroom with American flags, pictures of the Statue of Liberty, and “God Bless the USA” plaques.  Her two adult children, unfortunately, had little to do with her aside from managing her finances; and so, my weekly visits served as the key highlights of Martha’s last years of life.

On that chilly autumn day when I sat by her bedside for what would become the final occasion, thin nasal cannulae snaked out from her nostrils and across the grimy, long-unwashed sheets to a bedside oxygen machine whose noisy gurgling disturbed the room’s otherwise funereal silence.  Martha lived in a cheap, disreputable nursing facility; her small, poorly lit, dank apartment reminded me of a dungeon.  She had wrapped herself into her favorite blanket, a tattered fleece quilt with a pattern of little red cardinals hopping along tree branches against a background of forest green leaves.  Her bed had a stout wooden frame surmounted by an even stouter headboard that had built-in shelves and drawers decorated with innumerable USA-themed memorabilia, tiny plastic biblical figurines, and stacks of old greeting cards.  The giant structure engulfed Martha’s frail, dying body, and the mattress reeked of stale urine.  “Martha…it’s me. Martha, can you hear me?” I whispered loudly, cognizant of her poor hearing.  She responded to my greeting by turning a bleary-eyed ashen face to me, muttering something incoherent, and falling immediately back into a stupor.  She died four days later, before my next weekly visit.

For some time after Martha’s death, I felt haunted by our last moment together and how it hadn’t ended in cinematic fashion, with the dying character imparting a brilliant, life-altering message to the captivated audience.  According to popular lore, Martha should have awakened, turned lucid eyes to me one last time, and whispered some deep philosophical advice as her parting words.  Instead, she gave me a vacant, expressionless stare and an unintelligible mumble.  I felt as though she and I had in some way failed because we did not generate the necessary amount of profundity and significance during that final encounter.  This sense of failure threatened to eclipse the many fond memories I held from our preceding four years of friendship.  I kept wondering, was all of our time together meaningless simply because the last moments before death seemed so unsatisfactorily unremarkable?

The answer, I have eventually realized, is no.  Do not overemphasize the importance of “last words.”  Obsessing over a loved one’s departing words simply adds undue stress to an already tense moment.  The surviving kith and kin hover ’round their dying friend or family member and scour their final breaths for meaning, coming away disappointed and distraught if they uncover no timeless, breathtaking, everlasting truths.  Fixation on the perimortem period can cause us to overlook the day-to-day words and experiences of life, believing them to hold less importance than the words spoken on the deathbed.  This thinking is fallacy.  The opportunities for gaining wisdom, the chances for finding meaning and wonder and remembrance, come to us daily in our interactions with others.  Life is simply too rich a soil to bear fruit only on the eve of the harvest; instead, we should search daily for new growth.

I kept waiting for Martha to awaken and impart to me some penetrating, soul-shaking, sagacious insight that would shape evermore the direction of my destiny.  She didn’t.  She had already spoken those words, in the countless afternoons we spent talking with one another; in the shaky, scribbled lines of the letters she constantly mailed to me; and in the laughter we shared over hamburger and onion pizza–her favorite.  Her memory should not be relegated to a single, cold, November day out of the hundreds of beautiful, sun-filled, happy ones we enjoyed.  Her brilliance, her beauty, and her wisdom, they were found in her life, not in her death.