We live in an old chaos of the sun,
Or old dependency of day and night,
Or island solitude, unsponsored, free,
Of that wide water, inescapable.
Deer walk upon our mountains, and the quail
Whistle about us their spontaneous cries;
Sweet berries ripen in the wilderness;
And, in the isolation of the sky,
At evening, casual flocks of pigeons make
Ambiguous undulations as they sink,
Downward to darkness, on extended wings.
Wallace Stevens, Sunday Morning1, Stanza viii
The Collected Poems, 1954
The first time I ever saw a dead person was in 1971. It was at the Thomas P. Kearney Funeral Home on North Main Street in Old Forge, Pennsylvania.2 I was attending the wake the evening before the funeral of my mother’s first cousin Alex. We called him Uncle Al.
He was the golden son of our large immigrant family who journeyed from the hill villages of Campania in southern Italy over a hundred years ago. From the seaside ports of Naples, they boarded passenger liners, tramp steamers, and sooty cargo ships fleeing poverty and famine.
They crossed the Mediterranean and the cold Atlantic to Ellis Island3 in New York harbor. From there they made their way to the anthracite coal seamed hills of eastern Pennsylvania with all of their possessions packed in battered trunks and suitcases. This was a destination far from the shadow of Vesuvius and the terraced hillsides of sunbaked stone and olive trees.
Alex was the embodied exclamation point of untold generations of our old-country ancestors. He was the first to go to college, and then medical school. He became a doctor, rather than a laborer, stonemason, or coal miner.
He was the pride not only of his parents and his many aunts, uncles, and cousins but of the entire town that collectively and proudly claimed him as their own. In a cruel twist of fate, Alex died suddenly of a heart attack in his early forties in a family filled with old people.
It is a tradition among Italian-American Catholics to have a wake, an open casket viewing prior to the funeral. This is where I saw him on a bier surrounded by massive bouquets of white flowers.
Here was his final bed. His head rested on a satin pillow, dressed in his sharpest suit, the one he wore to Sunday mass and to the hospital to round on his many loyal patients.
At this time of my life, I was a small, quiet, and serious boy. I was made more so by the untimely death of my own father three years earlier from a sudden ruptured cerebral aneurysm4 at the tragically premature age of thirty-four.
My father was a young doctor as well, the eldest son and the pride of his own West Virginia family. So, this ritual, my second cousin’s viewing, promised me something already familiar yet at the same time forbidding and unworldly.
I never went to my father’s funeral. The last time I ever saw him, he was being wheeled down our upstairs hallway on a white ambulance stretcher. He was semi-conscious, with his head lolling from side to side like a parody of a drunkard in a cartoon.
I had woken up early that sunny January morning in 1968. I remember there was frost on the windows looking out over the large circular driveway of the old Long Island estate in Roslyn Harbor5 where my family lived in a red brick carriage house with black shutters.
My mother was downstairs making breakfast in the kitchen. When she was done setting the table, she told me to go wake up my father. He had returned from a late-night call shift at the hospital where he worked as an anesthesiologist, a Lieutenant Commander in the Navy.
I remember taking the stairs two at a time and then heading down the hall, my fingers tracing the wall past my sister’s bedroom, then my brother’s and mine. I went past the bathroom that was still damp and warm from a shower my mother had taken that morning.
Slowly, I reached out for the brass doorknob of my parent’s room at the end of the hall and turned it, only to find the door locked. This caught me by surprise. Their door was never locked. I twisted it right and left, knocked, and knocked again. Then, I rattled the door, shouting for my dad to wake up. He didn’t answer.
My memory is unreliable after that and recalling these events feels more like a story told to me by someone else. I do remember my mom thinking at first it was funny, that he was playing a joke on us.
She then became being annoyed, and angrily came upstairs and began slapping, then pounding on a door that would not open. Her anger was replaced by panic. She ran back downstairs and called the neighbors, Mr. and Mrs. Best, who quickly came over.
They called the firemen who arrived in their red engine, flashing lights, and a wailing siren. They in turn called the ambulance after breaking through the door and finding him in bed, unresponsive. I can still hear my mom screaming his name, pleading with him to wake up.
For two weeks he was in a hospital6 in Glen Cove where I was not allowed to go. My relatives from Old Forge and Morgantown came over the next few days and clustered in the den and living room of our house.
They reminded me of the groups of dark shorebirds down at the beach at Mott Cove, a short walk down the hill. Their heads bobbed together, and they moved in groups speaking in hushed whispers and occasional cries. It seemed to me that they could not look directly at me without giving away a secret I couldn’t even begin to guess.
I do remember very clearly the morning my mother called me to her room, and stiffly and awkwardly told me he had died. She tried her best to maintain her composure and lost that battle. Her chin tilted back, her voice stuttered and halted. “Your father is gone.” The final, awful word “gone” broke into a high-pitched dissonant cry. Gone where? I was so sad and confused. I didn’t know, and I didn’t want to find out.
So, I refused to go to the funeral. Instead, I stubbornly hid under the front entry hall table as small clutches of women in black dresses, and men in dark suits and skinny ties passed me again and again. They knelt down and tried to coax me out but nothing on earth would move me.
The neatly creased triangular folded American flag that draped his casket sat untouched on that same table for weeks afterward. It was finally packed away in a cardboard box with the rest of his possessions and disappeared with most everything else that belonged to him in the years and many moves that followed.
It was with a mixture of dread and curiosity that I approached the white satin-lined casket of Uncle Alex surrounded with flowers. It exuded a cloying sickly-sweet smell mixed with some other musty odor that I could not place.
“Our Al”, is what my Grandmother and her four sisters called him. He was the eldest son of my Great Aunt Rose, the youngest daughter of the five Fabbo sisters. Her husband, my Great Uncle Tony was a painter who whistled Italian melodies while he worked putty into cracks in wood and sang in a warbling tenor as he painted.
Uncle Tony was once an entertainer, a guitar player who cherished his battered Martin guitar and serenaded lovers in dark restaurants and speakeasies. He often boasted that he once crooned a ballad called The Roses of Picardy7 for Al Capone.
Faded framed nightclub posters of him on the walls of his house attested to his once slick Valentino good looks. Now his perpetually smiling face was gone, replaced with a terrible visage of the utter and abject grief of a man who had outlived his only son.
The dead body was unreal to me, more waxworks than flesh. His neatly manicured clay-like fingers seemed firmly squared and unnaturally creased rather than soft and rounded. They were entangled with black rosary beads. A silver cross with a small figure of a dying Christ stared back at me.
I carefully watched his chest for what seemed like an eternity, but it did not move. I held my breath to see if I could keep mine as still, but failed, and exhaled loudly. His face was impassive, his thin eyelids were closed, somehow him and not him, not the Uncle Alex that I knew, but something else.
I must have stopped at the casket mesmerized at the sight of his body for a long time, because I remember stirring as if from a dream, suddenly aware of the unyielding presence and pressure of the living, bustling, powdered flesh behind me. They were pushing me forward towards the black receiving line of his immediate family who was waiting to receive condolences from the perfumed, and furred mourners stretching out into the hall, and beyond.
I attended many funerals after that, most in that same small town of Old Forge, where the old world of my family slowly disappeared. Next to leave was my Grandfather, then my Great Aunts Caroline and Sylvia, and Uncle Tony. Next were cousins that I barely knew, and old Italian men named Pecker, and the Duck, and Razor.
These were men who played pinochle, went to prize-fights at the Scranton CYC, stood on corners and smoked cigars. They were men who faded, grew old, and died…
And then it was my precious Grandma’s turn – the woman who helped raise me after my father died. She cooked me “pasta fazool” and rolled out macaroni and Christmas cookies on her kitchen table and called shrimp “shrimps.”
She let me pat her stiff hair-sprayed head while she laughed and laughed, always “worried” about me. Grandma hugged me hard at comings and goings. She loved me fiercely and unconditionally.
And then I moved on. I came to California, and a different world, far from the low rolling hills, and the dusty coal town of my mother’s family.
Years later I saw my next dead body. In truth, it was two dead bodies, but one I watched die. I didn’t exactly know it then, but the experience was the catalyst that caused me to pause and re-examine and re-direct my life.
For four summers I worked at the Stanford Sierra Camp8 at Fallen Leaf Lake, California. In my first summer there I was a counselor. I shepherded the three- and four-year-old “munchkins”, as their parents hiked, relaxed, and sipped wine on the deck of the old lodge. They reminisced about their carefree undergraduate days that I was still happily living.
My sense of humor was edgy, and definitely at times inappropriate. For the Fourth of July parade, I dressed up the children as Western settlers. They dutifully marched behind a covered wagon I had built out of a wooden cart, some PVC pipe, and bedsheets. It had the words “Daring Pioneers” written on the side of the wagon facing the parents. Facing the staff on the other side of the camp road were the words,“ Donner Party at Snack-Time. The hands of the munchkins were clutching and munching on chicken drumsticks.
As my fourth summer at camp after my college graduation turned to fall, I remained there working the conference season. I had no long-term plans and was, to be honest, somewhat lost. I had no idea what I wanted to be or even where I wanted to go next.
Fall became colder, and an early October snowfall dusted Angora ridge and the road around the lake. I was in the front office when a call came from a lakeside homeowner. Two fishermen had capsized and were struggling in the frigid water at Craven’s dock opposite our camp. My friend Rick and I grabbed the first aid kit and keys to one of the Country Squire station wagons and then slipped and skidded our way around Fallen Leaf Lake road.
We arrived to find the two heavy late middle-aged men chest-deep in the freezing water off the end of the dock. Their aluminum rowboat was overturned, their cooler and tackle-box bobbed beside them.
One man was frighteningly still, his face an ugly purple, his yellow-rimmed eyes open and fixed on some distant horizon. His arms extended limply to either side, a literal dead man’s float.
His companion heaved great gasps next to him, oblivious to our presence. We pulled both men from the water with considerable effort and laid them on the dock. Like his friend, the second man’s face soon turned mottled and dusky. His breathing became shallow and rapid.
Both Rick and I had taken CPR, and fumbled ahead, our cold numbed hands shaking. We checked his pulse. It was faint and thready, without the familiar rhythm of a normal heartbeat. As Rick began chest compressions, I leaned down to administer two rescue breaths into his gaping mouth, and then he retched.
Copious pea-green vomit snaked out of his throat and mouth with every thrust on his chest. I felt sick and gagged on my own rising bile. We continued CPR until the paramedics arrived and told us to stop. So, we stepped back, exhausted, allowing the reality and finality of the situation to sink in. Our prodigious efforts were in vain.
I remember clearly thinking to myself that this was a turning point. I wanted to know more, to be more competent and effective – to help. And for the first time in my life, I became fully aware of what I needed to do, and who I wanted to become.
I have seen many dead bodies since that snowy day at the lake. I practically lived with one during my first year in medical school in the anatomy lab. We named our cadaver Ernest, and would say we were always working in “dead Ernest.”
I am certain we did not invent that joke, but we always ridiculously enjoyed its repetition. Despite our wary familiarity with death, and our brave but often futile attempts to ward it off, physicians never entirely get used to it. Death remains an intruder, an unwelcome guest. At times, in some patients, death is inevitable. In others, it is an epic failure.
What has stayed with me most throughout my life as a doctor, since that fateful day on the lake and the years of study and training that followed, is an awareness born from actually seeing someone pass from the world we know into one we don’t.
In this fleeting moment, it’s hard not to believe in a soul. It is impossible to describe this ineffable feeling, but I remember a fragment of a poem I read in college whose authorship escapes me. In it, the poet describes the last moments of her dying father. She describes his mouth as “the size of a silver dollar with the dollar gone.” For me, that metaphor of emptiness and lost value says so much more than I will ever know.
***
Old Forge, Lackawanna County, Pennsylvania. Wikipedia httpss://en.wikipedia.org/wiki/Old_Forge,_Lackawanna_County,_Pennsylvania
Intracranial aneurysm, Wikipedia httpss://en.wikipedia.org/wiki/Intracranial_aneurysm
Roslyn Harbor, New York, Wikipedia httpss://en.wikipedia.org/wiki/Roslyn_Harbor,_New_York
Here’s the story of how I learned the profound honor and responsibility of giving bad news to loved ones.
The fire doors to the stairwells are fairly thick in the hospital. Still, when I opened the door to the stairs on the 3rd level, I could hear a distinct sound coming from the ground floor hallway. It was something like an animal howl, loud and uninhibited but also vaguely familiar.
I couldn’t make out any words or clear emotions due to the muzzle of the two-inch-thick metal fire doors. However, I knew that I did not need to walk into whatever situation was sparking this noise.
The ground floor hallway contains the trauma waiting room. That’s where friends and family of those unlucky patients did all that they could do. Wait.
Whenever the doors are closed to the MedStar Trauma waiting room, someone is receiving bad news. Doctors and nurses are telling patients’ families that “we did everything we could” and “I am sorry for your loss.” It is difficult news to give. And, it’s even harder for loved ones to hear.
I remember that when I passed by the waiting room earlier that morning, the door was open. I saw a middle-aged woman sitting alone.
The Code Yellow alert, an alert to an incoming major trauma that I had come down to investigate, was not going to be one of mine. A teenage girl had been brought in with a gunshot wound to the head.
It was a Wednesday. She should have been in school. But none of this mattered to me or my job. I only enroll patients into our traumatic brain injury research who have blunt head injuries. We are not interested in penetrating head injuries.
When I left the unit to go see my other patients, the commotion in Trauma Bay 1 seemed to be winding down. I didn’t think she made it.
The next time I passed by the trauma waiting room that day, the door was open, but no one was inside. The chairs had been rearranged so that two chairs faced one as if three people were having a close conversation.
It clicked in my head that the sound I had heard earlier was the howl of that girl’s mother after receiving the news that her child had been killed. There was a reason that sound was familiar. I had heard it before.
****
“Hey, Bethie, I’m on campus for a meeting and want to take you out to lunch. When are you free, and where should I meet you?”
“Hey, Pam! I have class until 11:30 and then a meeting at 1 for a project. Can we meet at The Golden Bear Café? It’s on Sproul. Food isn’t bad, and that’s where I always go for lunch!”
“That works. I’ll see you there at noon.”
I slid my phone back into my backpack. Dr. Fish was very clear on the first day of PolSci2: if he caught you with your phone out during the lecture, you would receive an automatic fail in the class.
I knew I shouldn’t have even checked my phone, but I was a popular girl! I needed to make sure I kept up with my texts.
Honestly, I didn’t want to go to lunch with Pam. Sure, she was the closest thing I had to the family at Berkeley. Further, rarely did she make the half-hour trip over the Bay to campus.
But I was less than two weeks away from my first set of college finals. I was stressed. I did not have time to waste on trivial matters like eating or relationships.
Then again, Pam and Dennis were basically my aunt and uncle, and I was thousands of miles from home in Chevy Chase, MD. It was not like I had many family commitments out at Cal.
I guess I could spare time for lunch.
I walked from Wheeler Hall to The Golden Bear Café (GBC for short). The sky was brightly overcast that Tuesday, just like always. It was in the 50s and foggy, and some leaves were still on the trees. Rotund squirrels were digging through the trash cans. In my opinion, everything was pretty damn near perfect.
I was wearing my usual uniform of jeans, scuffed Frye boots, a white V-neck, and an effortlessly cool thrifted cardigan. In reality, I put a lot of effort into looking so effortless, but this is one of the accomplishments of a freshman college girl.
I was starting to get annoyed. It was already 12:30 with no sign of Pam. I needed to get moving if I was going to make it on time for my Chemistry research project meeting.
I was just about to text that I was leaving GBC when I saw her walking through Sather Gate with Dennis. Huh, she didn’t mention that Dennis was coming too. Dennis is my mom’s cousin, and Pam was my mom’s best friend in college.
I guess it worked out pretty well when they got married. I was also close to their daughter, Sandra. She was the same year as me in school.
At the beginning of the year, we joked that Sandra and I switched families for college since she was only a 20-minute drive from my parents at Georgetown University. My mom also said many times that if I was going to be so far from home, it made her feel better knowing I had family nearby in case of emergencies.
I waved them over and gave both of them a hug. Dennis took one look at my outfit and said, “you’ve turned into such a hippie.” This made me smile even bigger.
Hippies are cool! That means I’m cool! Look out world, new and improved Beth was making her way onto the scene.
But it was then that I noticed something was a little bit off. I had tried to make eye contact with Pam, but she shifted her eyes behind her sunglasses and wouldn’t look at me.
It was also definitely not sunny out. Why was she wearing sunglasses? I turned to Dennis about to ask what was up when he put his hands on my shoulders.
“Beth, Charlie had an overdose.”
Ok, this is ok, I thought in the ensuing two-second pause. He’s probably in a coma or in the hospital, but he’s ok. I’ll just go home for a week and be back in time for finals—nothing to freak out about.
“And he died.”
What?
No, he didn’t. He’s 21. Or wait, he’s 20. His birthday is next week. I haven’t bought his present yet, but I swear I was going to get him something this week. They’re wrong. This isn’t right. My brother isn’t dead.
I looked at Pam again and realized that she was crying. Dennis was crying too. I felt a slight sting in the corners of my eyes. “You’re wrong. He’s not dead.” They needed to know this. This was not possible.
Dennis tried to hug me, but I pushed him away. I didn’t need a hug right now, especially not from him. Why would he joke about this? This wasn’t a funny joke. He could stop now.
“I’m so sorry, honey,” Pam choked. She looked like she couldn’t stand without holding onto Dennis.
My eyes were getting blurry. I wasn’t one to cry that often, especially not in public. I wasn’t even sure why I was crying because I knew this wasn’t true. Why are they saying this? My wrist reflexively went to my face as I felt the tears run from my eyes. My sweater sleeve came away damp.
“He can’t be dead,” I kept arguing. My breath started to shorten as the sobs swelled. I focused on my tuna melt and saw that I had only eaten a few bites. When I swallowed now, it felt like my throat had narrowed to half its size.
“Let’s call your mom,” Dennis said. I could call my mom? That was allowed? Dennis handed me the phone, and all I heard was my mother howling. I had never heard a sound like that before. It was guttural. I don’t know what I did with the phone.
It was then that I broke. People sometimes use the term “broke down” to describe their reaction to events like this, but I just broke.
I was both totally inside myself and unable to think; I just kept wiping my face because the tears kept coming. Somehow, I wound up on the ground, sobbing. I was in the middle of the busiest part of campus right as classes were changing.
I only saw one person looking at me before I went back into myself. And, then, I was in the back of Pam and Dennis’ car.
Pam asked me which friend I wanted to call. I could call my friends? I mean, I get that I could call my mom, but isn’t this a family thing? Don’t we keep things like this to ourselves? We never told anyone when George or Charlie were in rehab.
Isn’t this the same thing? Pam told me I could call my friends, so I looked at my most recent calls. There was the call to Mom, and then the next call was from Alexis Newman the day before. Right, Alexis is my best friend. I called her.
“Hey! What’s up?” Alexis said.
“My brother died,” I wept.
“Where are you. I’m on my way,” she said immediately. I think I said something about being in a car with my aunt and uncle. And then, I just cried.
She kept asking me what had happened, but I didn’t know. What did happen? Dennis said it was an overdose, right? I don’t know if I told her that. I think I just cried.
My final memory of that extended day was seeing my family at Dulles baggage claim. Pam told me that they were coming to pick me up, but I didn’t know what to expect. I mean, it wasn’t my whole family picking me up. But I guess it would never be my whole family again. We were officially broken.
When I saw my mom, it didn’t look like my mom. Yes, I recognized her. Of course, I did. But when did she get so small?
She saw me and made that sound again. As I hugged her, I could feel that she had shrunk to the size of a child. I actually felt like I might break her if I hugged her too hard.
Her frailty shocked me more than the gaunt look on my dad’s face or the anger shown on my brother, George’s. As we all walked down the corridor to leave the airport, my mother turned to the wall and wretched. Vomit sprayed all over the floor, but she just wiped her mouth and kept walking. We would never be the same.
****
“I just don’t get what they won’t understand. If you walk them through and clearly explain everything that happened to the patient and why they’re not going to recover, how would the patient’s family not understand that?”
Edward [1] made that comment in our class on the ethics of end-of-life care. It was part of a broader discussion on how to talk to our future patients and their families about the end of life. It also included an exploration of what our role should be as their doctor at this painful time.
We had veered a bit off topic from discussing the readings. But this was always when the more interesting discussions happened in these groups. Besides, our ethics facilitator, one of the lead medical ethicists at Georgetown, did not seem to mind the direction we were heading.
I replied, “I don’t think you get that logic might not work in this situation. There are so many emotions involved for the family members, and they might not even want to listen to you.”
I was starting to get fired up. We were discussing how to break bad news to a patient’s family about the brain death of their loved one.
As first year medical students, we had the luxury of having these theoretical discussions with our classmates and professors long before we would ever be expected to have them with patients.
Try as I might, I sometimes got heated in these small group discussions. I probably came across as a little intense. However, I was starting to realize that not many of my classmates had encountered death or dying as I had. Maybe I could use the shock and grief I went through to help educate my peers.
I thought about a surreal story my mother relayed from that day years later. She was alone in my childhood home when the police knocked on the door.
They asked her “are you the mother of Charlie Glowacki”? After confirmation, they said, “I am sorry ma’am, but your son has passed.” “Passed what?” my mother asked in confusion. I think about that whenever I am told to “avoid euphemisms” when communicating with a patient.
I remember that day in chunks and swathes. Little stitches of human interactions come through and stick in my mind to this day. There was Alexis’s concerned voice, the look of abject horror on my dad’s face, and the flight attendant’s offer of an extra blanket when she saw the tears in my eyes.
There was also the sound my mother made. I have only heard it once since then. It was the same sound the mother at MedStar trauma made. It hollowed my bones and carelessly sliced through my chest.
I hope never to elicit a howl like that. However, I know that sound will haunt me again sometime in the future, given my chosen career.
I also know that it is a great responsibility and privilege to interact with someone on the worst day of their life. I will show the utmost compassion and humanity that people showed me that day.
[1] Name changed for anonymity
****
This story was initially written for a course the author was taking called “Reflective Essay: Writing Your Experience.” It is one of the most popular electives at Georgetown University School of Medicine where the author is a medical student. It was developed and is taught by an adjunct faculty member, Margaret Cary, MD, MBA, MBA, PCC. In addition to being a writer and educator, Dr. Cary is a leadership development coach, trainer, and contributor to TDWI.
Have you ever seen somebody die?
In my first year of medical school, this subject has yet to be broached in a meaningful way. As medical students, we are preparing to work in a field of literal life and death. But how do you handle death if you’ve never seen it?
Life is easier for us, we have all seen it, experienced it at least to a degree. But death is elusive. It’s shrouded in mystery. It’s painted in novels and movies and TV shows as difficult and beautiful.
It’s talked about in hushed, reverent tones of inevitability and acceptance. Even when it’s messy or unfair, the character at the end has some realization that there was good in it.
This raises some questions:
I have found that watching someone die is an experience unlike any other. It changes you in ways you both appreciate and hate.
Though, almost a right of passage on the path to becoming a “real” doctor, it seems clinicians rarely speak about their first and very visceral experience with death.
It creates anticipation, fear, and maybe a tinge of excitement imagining what it might be like when you are the one there in the room when a person’s soul departs—when they draw their last breath. It becomes this mystical realm of someday-but-not-yet. What happens when that day comes?
I have seen someone die and here is the truth of that experience for me. I watched both of my grandparents decompose this past year. They transitioned from vibrant, warm, exuberant people to barely more than carcasses. They appeared similar to what I spent the last six months hacking into in the anatomy lab.
In March of 2013, I found out my grandfather (Papa) had salivary gland cancer. This was a blow delivered awkwardly by my parents one afternoon. I was in shock.
My Grandma and Papa had raised me. They were often more like my parents than my real ones. They were two of the most important people in my life.
Somewhere in the back of my mind, I had always known this day would come. Death is a natural process that everyone encounters. But I couldn’t believe it was now.
I saw my Papa that week. I drove over to their house and, as usual. He was in his garden, kneeling on the ground in dark pants and a button-up shirt, dirt caking his knees.
Surrounding him were a trove of tools. He was wrenching some part (I cannot even name) off of his sprinkler system. “Hello Lauren,” he rumbled. How could this incredibly active seemingly healthy man be dying?
Two and a half years later after countless bouts of chemo and radiation, it was undeniable. His liver gave out and his organs began to shut down.
Within two weeks, he went from presiding over his Mason’s club to lying in a hospital bed unable to talk or even open his eyes.
I remember my Papa’s last day. The morning had been horrible. I had gone by myself to their house and found my grandma in hysterics. I ran in to find him spewing bile, gasping for air. I stood there utterly helpless.
Fast forward a few hours and my parents, aunt, and I sat in the family room where his hospital bed lay. It was May 13th and a beautiful day. The screen door was open and there was a soft breeze that floated in mixing with the increasingly evident smell of death.
He couldn’t open his eyes anymore. They fluttered constantly but never focused. He could no longer speak, but moaned every so often, stridor with every inhalation.
His breath was rotten and his mouth looked like a black hole. I remember standing over him noticing how few teeth he had left.
We were looking at old family photos. We pulled album after album down from the shelves and sifted through years of memories just for something to do.
My grandma stared at him. She couldn’t look away. She didn’t say anything. She just wrung her hands and stared at him as his breath became more labored and less frequent.
And then, I was sprinting to the next room, urging my dad off his work call, “this is it, this is it,“ I said, “you need to come now“.
We all sat there and waited. Occasionally, someone would walk up, hold his hand, tell him he was loved.
My grandma went up and told him quietly he could go. And that was it. He breathed in deeply and out, and his body was still.
What do I remember after? I remember my dad, who doesn’t express emotions, pacing the beer garden outside. He was just walking the path, hands clasped behind his back, eyes up to the sky.
I remember my grandma’s eyes losing focus, her body crumpling into me, almost as if she had had a stroke.
I remember making a joke to lighten the mood. I remember the tears that ran down my aunt’s face silently. I remember driving home that night turning up the heat in my car as high as it would go, sunroof open to the stars, sobbing.
I remember thinking how incredibly ugly death is.
In recent months with newly acquired vocabulary, I have poured over articles trying to pinpoint down exactly what happened to my Papa. His cancer began in his parotid gland. It affected his recurrent laryngeal nerve and rendered him unable to speak much of the time from diagnosis to death.
His liver shut down—the bilirubin turning him yellow. His teeth falling out because of chemo. I can break it down into science now, but it doesn’t really matter. That wasn’t my Papa.
My Papa was the man who built me a sandbox on his back porch. The person who took me to feed ducks every Wednesday in preschool.
We used to go deer tracking throughout my childhood. We would wind along a path in their giant backyard, cross a creek, following prints and droppings for what felt like miles.
He built me a swing, fashioned it off a tree, and my sister and I would fly out over the creek as he pushed us. He drove carpool to school. He learned my friends’ favorite sodas and snacks and would bring a cooler with him when he picked us up.
He was partially deaf so you would have to speak a little louder whenever you talked to him on the phone. He had a beer every night at 5pm—only one, and a bowl of chips to go with it.
He kept Neccos in his pocket, the candy apparently everyone but me abhors. He would fish them out when I asked.
Some other stories by medical students:
Pear Pressure: A Medical Student’s Introduction to Empathy
The Privilege of Being a Third Year Medical Student
My First Patient, My First Death
He taught me how to use power tools. I built bird feeders, and boxes, and a stool.
He taught me how to play the piano. He attended every performance I ever did.
He collected articles “disproving” global warming that he would send to me. I would fire back, pointing out all the article’s flaws. I remember his slow smile when he got his desired rise from me.
When I told him I was switching to medicine, he fished out his old chemistry book from 1949 and handed it to me, commenting that perhaps the science was a little outdated. This was my Papa.
Move forward a few more months. I was still reeling from the loss of my grandpa when we learned that my grandma’s melanoma had metastasized. She had ignored it while my Papa was dying.
We were more prepared this time. We knew what it was like. They gave her six months. It took her four.
At her end, I sat by her hospital bed, and the scene replayed. But she, unlike Papa, wanted to die. She had made that well known.
Her mind was going because of Alzheimer’s or depression. Both had been greatly exacerbated by my Papa’s death.
But there had been a few months before the diagnosis, where she had come back out of her shell a little. She talked of wanting to go to Hawaii again.
She had made friends at her retirement community. We took her out to coffee and dinner. Her incredible sense of humor came back.
As she became weaker, though, she returned to the shell that had clouded her since my Papa’s diagnosis. She was weak, and tired, and had had enough.
The night she vehemently expressed this to my father, she had a stroke. Upon hearing this, I waited one week to complete an exam and then I jetted across the country back to California.
American Airlines offered free movies, and as I clicked through, I found The King and I. This was my grandma and my favorite movie to watch together.
I sat in the dark somewhere over Indiana, tears running down my cheeks as Anna waltzed with the King. I felt like I was running a race against time.
By some cruel miracle, she lived 17 days after her stroke. Her advanced directive firmly stated no assistance but her body didn’t seem to grasp the concept that it needed food and water. I arrived on the evening of day 15.
I sat with her for the next two days. She looked eerily like my Papa. Eyes fluttering, mouth open all of the time, gasping and moaning. Her mouth too was rotting and black. It’s a strange thing to notice but it was so unlike her—always clean, always healthy.
I remember thinking that I would rather die immediately than have someone watch me like that. I asked her if she wanted to listen to my lecture capture.
And because she didn’t moan, I took it as a yes. When I told my dad as much, he remarked, “Well, if three hours of that didn’t kill her nothing will.” As I said, we got better with the death thing the second time around.
We took turns being with her—never leaving her alone except at night. I was alone with her when there were a few false alarms. I watched as twenty seconds occurred before the next breath.
My heart began to race as I thought, this is it, and I’m alone. Part of me was terrified. Was I adult enough and capable enough to handle it? Part of me, I’m embarrassed to say, wanted it to be just me and her when she went.
A voice I tried to hush kept nudging how perfect it would be—just me, her, and the special connection we had shared my whole life.
But I don’t think she wanted any of us to see her last breath. And so she went at 5 AM when only her caregiver, Puyon, was by her side.
Again, it was horrible. Again, it was unfair; a healthy person wasted away in front of me until she wasn’t that person that I knew.
My grandma was everything kind and good. I think it was impossible not to like her. Every single person I have met has commented on how sweet and funny and special she was.
This was a woman who had the amazing knack of making friends immediately and easily. She was vivacious, unpretentious, and chatty. She instantly drew people to her.
Even as a child, I knew she was something incredibly special. Someone to emulate.
When I was about 3, I decided I wanted to be just like her. We had matching jackets and a matching haircut as well because I wanted to look like her.
She was fiercely independent and she would tell me stories of her many adventures. She told me that she traveled to Hawaii and Alaska before they were states. And, how she ventured to the south alone before the civil rights movement.
She loved going to the city and to coffee and to the movies. We did each as frequently as the two of us could.
My Papa and she visited almost every country in the world. She loved different cultures and the thrill of the unknown.
She loved reading, watching the stock markets on TV, and dancing. She was one of my best friends, my confidant, and my role model. We would talk for hours on the phone each week when I was across the country in college and grad school.
I gave eulogies at both of their funerals. I found it very difficult to put into words what they were to me. How do you describe someone who was your world in a few measly sentences? How do you explain that when they died, part of you did too?
After my Papa passed, my mom said he had given me an incredible gift. The very thought still makes me furious. She was implying that witnessing death in such an intimate way before beginning medical school would make me a better doctor.
Well, it was not a gift I wanted. I did not want to watch the strongest man I knew collapse. I did not want him to become a walking skeleton. I didn’t want to see him fight so incredibly hard for the life that was eluding him.
I did not want to see her so fragile, so hopeless. I didn’t want to see her rot in front of me. I didn’t want any of that. I would happily exchange being a second rate doctor if I could have my grandparents back.
March 2015 to March 2016 have held both my happiest and saddest memories. Amidst celebrating my engagement and a new career journey, I said goodbye to two of my best friends, my second parents. I said goodbye to a part of me.
Even my hurried wedding—shoved in the day before Christmas so my grandma could attend before she died—held mixed emotions.
The same lady who had traipsed the hills of San Francisco with me barely five months earlier could no longer walk. She trailed an oxygen machine behind her and a walker in front as she shuffled her way slowly up the aisle of the church. All while mumbling “My baby. My baby is getting married today.”
I sobbed that night in my new husband’s arms, unsure whether I was crying because I hadn’t had time to process the marriage before we did it. Or because the fantasy of the wedding had not occurred. Or because my grandma was dying.
I sometimes close my eyes and picture everything as it was – perfectly. I can feel the soft brown carpet of their house on my cheek. I smell the juicy chicken my grandma is roasting. And, I can taste the foam of the beer my grandpa has given me. I hear their voices ringing in my ears.
How incredibly loved I was.
Why am I sharing this? Because I want to you see my Grandma when you experience your first code.
I hope you will notice the auburn hair that she’s dyed since she was 20. Notice you the gentle upturn of her lips and look into her eyes that are mirror images of mine, freckles and all.
I want you to see my Papa when you pronounce the time of death at 3:28 pm. Then, I hope you will carefully remove his gold-rimmed glasses, sliding them off his strong German nose.
I hope you will smile at the combed over bald spot. I want you to see the person that he was.
Our patients are people, alive or not. Human beings with strong backstories, memories of adventures, of love, of loss of struggle, of joy, of shame.
The dying patient is the same person who once lived. The dead are not the relics they appear. Let us learn to treat them with that respect. Let us help their soul on to something more peaceful.
It is our privilege.
Maybe my mom was right, after all, calling it a gift.
First published Apr 30, 2017. It has been reviewed and updated for republication on Aug 16, 2020.
Brittany Maynard was a young woman who knew she most likely wouldn’t live to see the age of thirty. She was diagnosed with brain cancer in January 2014 and underwent surgery to remove it. Unfortunately, the cancer returned a few months later and she was given six months to live. She was facing an immediate future that would be filled with insufferable pain as well as increasing disability.
While narcotics and other drugs are used to mitigate this type of horrific pain, the suffering is still immense. Brittany chose not to accept this fate.
Rather, she moved from her home in California to Oregon in 2014 in order to control her destiny. She died in November of that year just a few weeks short of her 30th birthday.
Because Oregon has this option for those facing a predicament, similar to Brittany’s, patients can avoid an excruciating span of suffering and die with dignity. On the books since 1997, the “Death with Dignity Act” allows terminally ill patients to end their lives by voluntarily taking a lethal dose of physician-prescribed medication.
What was incredibly notable about Brittany’s particular case is that she actively moved from one state to another in order to determine the quality of her own end-of-life. The fact that Brittany relocated served as a wakeup call to the state of California, resulting in the passage of the Death with Dignity Law there as well.
The question, however, remains, given that Brittany’s case was so heavily publicized, why are there still only a handful of states that have passed this particular law? And for those states that have enacted their own version of it, why does it remain so vague? Versions of the law lack substantive detail and, therefore, lend themselves to numerous interpretations.
In an article in the New York Times, Dr. Jessica Zitter cites a case that puts into perspective how difficult it is to help patients in Brittany’s situation, especially from an ethical point of view.
This is because a physician-assisted death puts us in a position in which we are doing exactly what the Hippocratic oath tells us not to do. Interestingly enough, this option has been used by less than 1% of the target population in Oregon.
In my experience and because in my state of Massachusetts, we do not have this law, all of our actions are limited in terms of how much we can help under the general philosophy of “do no harm”.
We have been able, many times, with consensus from the patient, the family, and the hospital participants in the end-of-life care teams to utilize all means legally available to us in order to “make somebody comfortable”. Passing takes a few minutes or a couple of weeks, and in the interim, we titrate morphine or Dilaudid as needed.
From a doctor’s perspective, it goes without saying that it is extremely difficult to make that decision to help someone who is suffering at the end of their life. It takes an in-depth knowledge of the patient.
That is why this decision should only be undertaken by doctors who preferentially have an extensive history with the patient. And thus, they are keenly aware of the degree of suffering and quality of life that the patient is experiencing. Patients shouldn’t have to move across state lines to die with dignity.
I believe I represent the primary care physicians in this world who want to be part of the equation, who want to participate and make the kinds of decisions that will be in the patient’s best interest, based on our prior knowledge.
Revisiting Brittany Maynard’s situation, I suspect that with the help from her team including her primary care physician, her trusted oncologist, hospital support by way of social workers, and religious personnel, it would have probably been possible to provide her with the relief she needed.
Related content: My First Patient, My First Death
I certainly cannot judge any of the participants in her care. What I can judge, though, is the status quo which is focused on not just treating, but on unnecessarily extending treatments. And, at times, even over-treating.
Granted, our society is one that prides itself on providing “good medical care” in the ultimate hopes of “saving lives”. This certainly is a wonderful feeling. This, however, does not mean much at all in cases like Brittany’s where extending her life only meant extending the unbearable pain and suffering.
We desperately need to review our ethical principles, our legal behavior, and our medical standards as they relate to end-of-life care. And, we need to put the individual first over futile medical heroics because, in the end, it is after all about the individual.
Our approach should take into account the family second. And thirdly, an umbrella of ethical behavior in tandem with a more humanitarian answer to ending the suffering.
Of course, the patient’s death is not a goal. Further, it is not a standard of care or a desirable outcome. However, sometimes it is the most humane option.
Our current legal and peer review systems focus on following rules and regulations, while largely eschewing the patient. We have to create a culture where, under the most sophisticated principles, an option exists that provides an out for patients and families whose destiny is otherwise only to suffer immensely.
Education is of paramount importance. We need to make people understand that the option I am proposing would, in fact, be a worthwhile solution for patients like Brittany.
We can create a society that assures patients that they are ultimately in charge of their own destiny and that they do, when the time comes, have the capacity to reduce or completely prevent an enormous amount of pain and suffering.
They tell me you always remember your first. If that’s the case, what images of you will remain imprinted on my brain, snapshots of one, with sandy hair, brown eyes, mocha skin? Will it be your long, spindly fingers? The way when I first saw you, you were sitting bolt upright, eyes wide, hair standing on end as if haunted by some specter of mortality? Or will it be your last days, coma-silenced, sweat from the Caribbean sun going unwiped on your cheeks, condensation from days wearing an oxygen mask chapping your full lips? You were my first patient, my first death.
I know you were so much more than the woman, sitting cross-legged, too weak to get up and use the washroom, crying because you had to “number two” and there was no one there to clean you.
I want you to tell me about your son. He looked so beautiful in his suit at your funeral! What he was like? Did you love his father? What it was like for you not to have your daughter at home?
I was told you loved to bake and had boundless energy. What if I had met you on the street five years prior? Or I had joined your church? We would have bonded over macaroni pie and callaloo, making orange juice and cutting up salad together.
You would have welcomed me into your home for dinner rather than me feeding you nibbles of crackers and praying you didn’t choke on the drops of water. I would have seen the woman you were rather than the shell of a woman fed up with her own helplessness and ready to go home.
The first time I saw you in Ward 12, while at Susanna’s bedside, it took me days to realize you were the same person I had met months before. The one who I frustrated with my inability to understand your last name. The one, sitting cross-legged on her bed in room nine.
I remember desperately willing you to take bites of your tray of rice and beans just like I did with the crackers in your final weeks. I was afraid of the way your scapulae protruded. And, how my fingers could easily encompass your upper arm.
Did you recognize me, the token white girl wandering about the hospital? Or were you past the point of knowing just another of the faces of the medical team that would not let you die in peace?
You were my first, you know. The first patient I sang to, almost inaudible: ‘Twas grace that taught my heart to fear… The first patient I’d seen seize and the first time I thought someone was going to die. You were the first person I read to, the first one I touched. The first patient I had ever lost.
I didn’t know how to calm you. I knew the ward was fed up with you, your incessant moaning. They didn’t see your utter misery, your helplessness. They didn’t understand that for you, this virus was taking everything. You simply couldn’t live like that. But you weren’t yet sure you wanted to die.
I touched your arm because maybe then you could sleep. Maybe then there would be silence, you would have peace.
I was scared, you know. Not of the virus. I understand the virus. I was frightened because I didn’t know what to do. No one trains you for when it’s just you and the patient. This is especially true when the patient is in pain and you have no medical skills to speak of. No one tells you how to ease a stranger’s suffering just by being a fellow human being.
I touched your arm, and you shut your eyes. Maybe you slept. I just stood there, my oversize bag sliding off one arm, the other hand just moving up and down. Softly. I had nothing to say. You wouldn’t have heard anything anyway. Just the repetition, up and down.
Sometimes you would cough, startling me out of my reverie, my prayer. Sometimes your eyes would flicker open. Mostly, you just stayed silent until I left. I always willed you to sleep more as I stepped soundlessly away. Just rest now, just be at peace, just don’t give up.
On Monday, you seized. I thought you were going to die on me, right there. I prayed and prayed not now, not now, not while she seems in such pain! Your arms jerked first, then your entire upper body, tightening, stiffening, rigor-like. Your face contorted, eyes rolled back. It looked like agony.
Whatever the seizure did to your face made it look like the most painful thing you had ever experienced. I called for the nurse, terrified. My heart raced. Not now, oh God, not now.
By the time the nurse came, you had finished. Rigor released, sunken back into the bed, breathing but not responding. I went through exactly what I had seen and the nurse told me not to worry, you’d done it before. Before? Before?
Still, because we called your name again and again and you never flinched, she went for the doctor on call. He came with his intern and I repeated again everything I had seen, what triggered it. I kept my hand on yours and kept repeating your name softly. Still nothing.
It took a seizure that left you unresponsive for them to hook you up to monitors to keep track of your heart and pressure. (The wards only had two or three monitors for the 30 or so patients on the two sides. I would learn that to be put on monitors meant that you were critical, your days were numbered.)
I stayed with you for more than an hour that night, terrified that at some point you would stop breathing. I wanted to be sure you were ok but also not wanting to leave you alone.
I sat on the edge of your bed, again gently running my hand up and down your arm. I prayed. I sang almost soundlessly. I watched. I willed you to wake. Every few minutes I would say your name, ask if you were all right, if you could hear me.
Finally, by the time I was getting ready to leave, I called out to you again and you turned your head slightly, opened your eyes. You became more like you were the previous days, not talking, not eating, not taking your tablets, but awake, somewhat responsive. I breathed a sigh of relief. I could go home now.
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The Indomitable Spirit of My Dying Patient
Reflections on Death with Dignity
Getting Hit By a Truck Taught Me the Power of Love
That February Monday would be the last time you would open your eyes to me. By the time I came to check on you and a friend from church who had suffered an anaphylactic reaction. You were the only two left on this particular ward at the time.
The next day, the nurses had moved you from the back of the ward (where all three of you, my HIV patients, had been kept as would be the case for my patients in other wards) to the middle, where they could keep closer attention to you.
Eyes closed, corpse-like even, you inhaled and exhaled the oxygen pouring through your mask. Fluids came in one tube and out another. I repeated your name: “Lynn! Lynn! Wake up! Can you hear me?”
Nothing. No turn of the head or an opening of eyes, not even a squeeze of my hand. I sat down on the bed beside you, massaging your arms, your shoulders, willing you to wake up.
I remember a tangle of doctors’ voices when I asked, talking about a medication reaction. They wanted to treat you with something else that should stop its irreversible damage to your pancreas. Maybe then you’d come back.
I wondered if that was in your best interest. You had stopped eating, stopped taking your tablets. You couldn’t live with a body that had betrayed you any longer. And you couldn’t bear not being able to get up and go to the bathroom on your own, much less run a household, be a mother, bake.
You tried and tried, but each time your body crashed, another five pounds were lost. You couldn’t make yourself eat. You couldn’t find the energy to walk your son to school. You wondered if it was worth it.
More stories by medical students: My Grandmother’s Death Taught Me to Be a Better Doctor
Now, far away from your family, dropped off at the side of the ER too weak to walk in and present yourself, miserable at your lack of yourself, you have given up. You don’t want to do it anymore. You will miss your son, your daughter, but you simply can’t. Not again. And as much as I don’t know how to handle your leaving, I can’t blame you.
I came to see you every day. Sometimes more than once. I don’t know if you ever heard me or knew I was there. Or if you did, would you have known who I was.
I sat by your bed, sometimes talking to you, sometimes whispering prayers. I would clean your face with a damp paper towel to help keep the oxygen from leaving your lips crusting. And, to help keep your eyes from running.
Sometimes I would read to you from the Psalms or my favorite passage in John, or Mark Doty’s poems: which is the way with light: the more you break it, the nearer it comes to the whole (“Principalities of June”).
The older woman in the bed next to yours would cry when I read. She promised to pray for you. Could you feel it? And always touch—my hand on your arm, your hand. I’m trying to rub out the swelling from the slipped catheter and trying to make sure you weren’t in pain. Sometimes I simply hold your hand so that if in some way you could be aware, you would know you weren’t alone.
Your cousins came to see you, the ones you had stayed with. Mary came, and she brought your son. She cried for you, in the privacy of the clinic, wondering what would happen next.
We all knew. When it came, it wasn’t a surprise. I had watched your blood pressure drop over Friday and Saturday. Then I watched your heart rate increase again, your oxygen saturation drop slightly lower into the nineties. I was the last visitor you had, I think. I came Saturday at noon, read to you about light shattering, and becoming whole just as you were about to do the same.
The nurses told me softly when I came into the clinic Monday, “Lynn died at 6:15 Saturday night.” I knew it was coming and still, it took the wind from me, took me a few minutes before I could pull a smile to my lips and greet the morning’s patients.
I gave your cousins a hug and got the funeral details. I walked up to the ward. The woman beside you told me it was peaceful, you had just stopped breathing. As she held my hand and tears rolled down her wrinkled cheeks.
I stayed with Mary a while as she tried to collect herself to take care of your son.
I went to your funeral too. It was strange to see you as more than just skin and bones, with makeup lightening your cheeks and accentuating your eyes. Your hair was neatly coiffed rather than standing up.
I fought tears as your cousin told me of who you were before all of this. Your son looked beautiful in his suit, his hair neatly braided. He was somewhat confused as he held onto Mary. Are you watching over him now?
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At your funeral, your cousin handed out magenta roses to those who had a special place in your life. Your closest friends, your daughter, Mary. She handed one to me, too. I didn’t know what to say. I hardly knew you.
Of the two weeks that I spent with you in the hospital, you were only awake for one, only talking for maybe four days. I felt helpless at your bedside as you nearly choked on cracker crumbs, crying because your fingers were too weak to open the package. I watched you stiffen and seize. I sat with you as monitors made sure you were still breathing.
What could I do for you? Every instinct wanted to save you from all of this. Maybe by letting you go, I did.
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This post was first published on April 10, 2012. It was reviewed and republished on October 12, 2017 and again on 5/17/2020.
A winding road along the estuary, embellished with a touch of fall, brought me back home after a grueling night on call. Leaves that were strewn all over the path ruffled as I turned into the gate of my abode. It was time for me to wake. And, I was pondering on the indomitable spirit of my dying patient.
Andy was a jovial countryman from the west coast of Ireland. Having grown up in a Catholic stronghold, he was a stalwart of a great work ethic. Always dressed in his tweed coat and paddy hat.
He was a bachelor all his life and a true ascetic to the core. He would stay up all night to nurse a sick calf. Or he might go for hours without food just to help the sheep get enough grazing on a rare sunny day in the summer. (Ireland is very well known to have four seasons packed in one day.)
His convivial yet subdued, nature made him a sought-after figure in his local community. People flocked to the neighborhood pub just to have a stout with their favorite farmer.
He did not care much for maintaining his popularity. He was the first in town to welcome refugees from war-ravaged states even when the vast majority of people opposed their arrival and settlement.
For months, he provided food and minded their infants. His relentless acts of kindness made the whole town reflect and eventually, embrace the refugees and care for them like their own.
On a mild summer morning, I had just started seeing patients on a bustling medicine ward. It was a chaotic confluence of multiple healthcare professionals. There were physical therapists, occupational therapists, speech pathologists, dialysis technicians, along with nurses and doctors.
The junior doctor staff having just started the academic year were scrambling to gather patient information. While nearly spilling my morning coffee, I was paged by a family practitioner who wanted to discuss a patient.
He said he had a seventy-three-year-old who had never been to a doctor. This is common in many parts of rural Ireland. Andy presented with increasing shortness of breath that was precluding his day-to-day farming chores.
He was not upfront about the duration of his symptoms and kept underplaying them. He was only at the doctor’s office on the insistence of his friend who happened to notice his discomfort even with menial tasks. His lab results revealed severe renal dysfunction.
I finished my clinic visit with Ms. McCurdy, a lady in her late sixties of German-Irish descent. We had had a long discussion where she was vehemently complaining that her son refused to come back from Australia.
As I escorted her to the front desk, I spotted Andy standing in the corner of the waiting room, with his perpetual smile. As he scuttled towards me into the consultation room, I could see he was perceptibly short of breath. But also that he was trying his best to avoid displaying it.
Related content: My First Patient, My First Death
We fell into a conversation about his village. It was an upcoming tourist destination given multiple movies had been shot there in the recent past.
He was abreast of all the current news despite not owning a computer or smartphone. “You cannot replace the paper, them gimmicks are making us dumb,” said the insightful countryman. I could see firsthand why he was such a beloved figure.
I decided to delve into the matter of the hour. And I was perplexed since we could not elicit any causes to explain the renal failure. Given his fluid overload, I wanted to admit him to the hospital to administer diuretics.
However, in no way could I convince him to stay. The diligent farmer had to return to his farm and go to festivities organized by a refugee family. He promised to take the medications I would prescribe and to attend urgent radiological tests.
A couple of days later, as I finishing seeing one of the last patients on a ward round, Andy’s kidney ultrasound report arrived. It showed evidence of polycystic kidney disease.
I called him to discuss the results and to see how he was doing. He said in the quintessential country brogue- “Grand doctor! How are ya? You must come down to the village for a pint.”
Further conversation revealed that he now remembered that as a child he was told that both, his father and aunt, had succumbed to a ‘kidney problem’. This information gave further evidence to the fact the familial disease is what afflicted him.
Over the next few weeks, Andy came to our clinic every fortnight. He demonstrated an understanding of the disease that confronted him. Further, he understood that dialysis was an eventuality and that his age would be a limiting factor for transplantation.
He knew that having to undergo dialysis would interfere with all of the activities that he valued the most. These included his farm, his community, and above all, the work for the refugees.
His stoic resolve married with his disarming personality left me, and others, in awe of the man. There was not an ounce of despair that he displayed. Instead, he imbued a sense of hope into patients of similar disease severity as he waited in the room with them.
It had come to a point that other patients would come asking if he was at the same clinic as them, instead of asking if their doctor was in or on time.
The disease was now, however, unrelenting. He was gradually starting to lose weight and exhibit signs of malnourishment. He developed temporal wasting with hardening of skin texture, and above all, his eyes were beginning to lose that radiance that formed a large part of his magnetism.
Andy was still toiling away looking after the cattle and being at the forefront of his altruistic endeavors. But it was perceptible that all this was wearing him down like never before.
I invoked the conversation regarding dialysis again. I explained that it may help alleviate his symptoms. But I could sense that he had made up his mind. He would not indulge in anything that would impede his autonomy.
He was clear that going on dialysis would mean the end of all his work that he valued the most. Forgoing dialysis meant that he would only have a few months left.
It seemed that this was a fact that he had already absorbed. He was determined to dedicate the rest of his time doing what he enjoyed the most.
Nausea with vomiting was unresponsive to the strongest anti-emetics. And, it had now started to consume him. It was combined with intermittent distress in breathing.
He still did not display any sign of despondency. Having being cognizant of the paucity of time he had left, he had already made provisions for his childhood friend Ian, another astute cattle farmer, to assume care of his farm. Having amassed significant savings, he set up a trust that would look after the refugees and the homeless that he had been tirelessly tending to.
In a phlegmatic manner, he remarked, “It is better than I expected. I have an idea of when the time is going to come and I know that I am not going to suffer.”
I could sense the clinic nurse had become a devotee of the Andy clan and was holding back a tear. So was I.
Andy finally got admitted to the hospital due to his unremitting respiratory distress. A few shots of diuretics brought mild relief and his smiling disposition returned. The antecedent grave moments dissipated into space, temporarily.
Related content: Is it Better to Plan for End-of-Life? Or Strategic Aging?
I could sense that he had prepared himself for the final stretch. His discomfort with respiration was in resurgence. Once, when he pursed his lips to catch his breath, he voiced, ending with his classic humor:
The morphine pump, to help abate his symptoms, was switched on. Nature would now take over. Devoid of any distress, Andy passed away two days later.
Andy turned around many lives. I was one of them. It is our patients who end up redeeming us.
In medicine, we often worry about a research grant not being approved or an academic position not attained. We bristle at its stifling bureaucracy.
These things often make us forget that the real prize is attending to those that made us go into the profession in the first place. We can be consumed by the impertinent. But, it is patients like Andy who end up being a beacon when these winds take us off course.
There is inspiration waiting to be derived from experiences that meander into our path. This happens even if all too often we fail to notice.
Selfless beings who exemplify the act of giving without any incentive and show the community that embracing the ones in need ends up making us indomitable.
Related Content:
Reflections on Death with Dignity
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The church where Andy was baptized, a baroque basilica set against a lush landscape, was also the venue of the funeral. Light pierced the multi-colored clerestory rendering a kaleidoscopic effect. Ian stood at the altar and recited Andy’s favorite poet, Dylan Thomas:
“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light”
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First published, 4/20/2018, it has been reviewed and updated for republication on 4/30/2020.
Fumbling the delivery when delivering bad news to a patient about a new cancer diagnosis or another illness with a particularly poor prognosis can lead to lasting negative effects on the patient and their families. This can irreversibly damage the doctor-patient relationship.
There is a great need in our health care community for educated and insightful communication. Physicians have a duty to be honest with their patients while making them feel safe and reassured.
A cancer diagnosis, unsuccessful procedure or an unwanted test result causes fear and confusion in the patients we’ve sworn to protect. The reality is that some physicians are ill-equipped to handle what comes next.
Delivering a medical diagnosis in clinical terms and explaining how that will impact the rest of a patient’s life are two different methods of communication. While 91% of surgeons believe delivering bad news is an essential skill as a physician, only 40% felt they had received appropriate and effective training to deliver it.
Although compassion and empathy are innate qualities, specific education and training can sharpen and improve these physician attributes. Traditional medical education does not necessarily address these issues formally.
Many studies have found a wide divergence in curricula that teaches physicians effective behaviors and communication strategies. In some trials, a brief intervention was all that was required to improve physician empathy as rated by patients.
Many courses on compassion and caring are new to medical schools. In the past, physicians had considered kindness and understanding a given. No professional training was provided on the topic. Admittance into medical school was enough of a test to gauge communication skills.
As a thoracic surgeon who has practiced for more than 14 years, I’ve been fortunate to guide patients through life-changing decisions every day. Yet, there is always something I can learn from every new encounter.
The skills of kind, compassionate yet effective communication isn’t written between the lines of diagnostic textbooks. Luckily, more medical schools are realizing the importance of healthy patient interaction.
Regardless of what we have been taught as health care providers for communicating with patients, it’s easy for each delivery of bad news to feel like the first time.
Luckily, there are more resources than before to help patients through one of the most difficult days in their lives. From online emotional training to virtual reality, there are many opportunities to broaden your communication skills and provide the best support you can for your patients. Here are some tips:
Sometimes you might be tasked with delivering bad news to a patient or a family member you’ve only met minutes prior. However, there is no substitute for building a foundation of trust.
This is true even if provided with only a short amount of time to do so. Simply electing to ignore that requirement could cause lasting harm. Figure out what your patient is looking for in their provider and show them you can be that for them every step of the way.
Bonding with a stranger is something we have to do with every new patient. How do you ask someone you’ve never met to trust you with their life? First impressions matter. Take these things into consideration:
Trust is hard-fought and well earned. It is the foundation of a healthy doctor-patient relationship.
You’ll want to know the patient as much as you can beforehand:
Even if you have a very busy clinic, make every patient feel that they are your only patient that day. They are your No. 1 priority.
Schedule a longer appointment to allow ample time for discussion. By providing a generous appointment window, you give yourself time to learn your patient’s preferred method of communication and a good deal of their personality.
Introduce yourself to the patient and everyone in the room. Take a moment to learn their names and relationships.
Initially, avoid using humor or touch to establish a relationship with patients or family members with whom you’re not yet familiar. You may do so as the encounter progresses based on cues you observe from the patient and their family.
Provide a safe space for the patient to tell you which family members they would like in the room. Ask the patient how they would prefer that others be involved in their care and any discussions about their health.
Making sure a patient has familial support (whether in person or via telephone in certain circumstances) when receiving bad news is important, The patient should have the space they need to process the news alongside loved ones who will provide the most support.
However, avoid undue stress from too many reactions, hysteria and negative emotions in the room. Be a pillar of strength as everyone in the room will look to you for leadership and guidance. Be in control while allowing enough latitude for the patient and family to express their emotions.
If the patient is someone who has been in your care for a long time, consider their personality and family dynamics, and identify coping mechanisms they may have used in the past. Being sensitive to a patient’s cultural and religious background or specific fears can go a long way in earning their trust.
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Many providers are used to delivering mundane clinical information in a matter-of-fact way. You may find it acceptable in many visits to list off laboratory results and CT scan terminology only to end with “your lungs look good.” This usually elicits a sigh of relief from the patient. However, the delivery of bad news must be framed differently and not allow room for misinterpretation.
The patient is about to face a million difficult decisions and a million more worries and fears about their personal life. At the moment you are delivering the news, most patients do not want to know the science or medical vocabulary to describe their illness.
Each patient must know the truth and how it will affect their future but gauge the level of detail the patient is willing to discuss. Some patients prefer that their physician discuss all of the scientific details.
They want to know the precise statistics about their chances of cure. They want to learn about possible complications and side effects of treatments. And, they want to know what science says about the rate of survival.
Others prefer no details but simply to hear that their physician will take care of them as if they were his/her own family member.
Some physicians become nervous when delivering bad news. This leads them to continue speaking after the initial pronouncement. It is a way to avoid a long period of silence which makes them uncomfortable.
It’s likely your patient is not absorbing much after that first shock. So instead of talking, be silent, wait for a reaction and provide frequent pauses. Keep eye contact, slowly approach the patient, observe them and react to their verbal and non-verbal cues.
Don’t ask “do you have any questions” and expect an immediate response. The patient may not have enough time to form their thoughts. Instead, ask “what questions do you have?” That will prompt your patient to search for their biggest concern and phrase it as a question.
Giving the patient time to breathe and letting their first concerns rise will help you target the most important topics your patient wants to discuss.
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Sympathy is easily confused with empathy but often is less useful and potentially harmful. While sympathy expresses feelings of pity or sorrow, empathy portrays the ability to understand and relate to someone else.
Remarks such as “I know how you must feel,” or “I had a family member with the same issue” only makes the discussion about yourself. Providing empathy requires understanding what the patient is processing and reacting accordingly.
Anticipate how the patient will want to process the news and what it will take for them to feel safer, more reassured and in good hands. It’s fine to say “I’m sorry” but follow with an observation of what they might be feeling. For example, “This must come as a shock but let’s talk through how we are going to treat this.”
Ask yourself if it is something you would want to hear in their situation. By offering hope with realistic interventions can begin to shift the conversation toward treatment. If a cure is not realistic, be upfront about that fact but offer encouragement about the treatment options and supportive care.
The first time you deliver bad news to a patient and don’t get the reaction you were expecting is eye-opening. In fact, every encounter is an opportunity for improvement and fine-tuning.
Compassionate physicians may be afraid of showing too much emotion during the visit. Instead, they become overly clinical and direct when a family expects a certain level of compassion.
Conversely, a physician who overcompensates by becoming too emotional can lose the trust of the patient or family, seeming weak, inexperienced or not in control. This will diminish their sense of hope and sense of being in good hands.
They will lean on you for support. Rather than focusing on how the patient will react, have confidence in yourself to identify what they will need when they do react. Do not undervalue your experience but take note of where you can improve.
Health care communication is a complex and evolving field. Every doctor-patient relationship is different, and it takes a trained eye and an open heart to successfully navigate each one.
Related content: Listen to Your Patients: They Are Telling You the Diagnosis
Implement methods of empathy and nonverbal communication in your practice. Be a keen observer and pick up cues from your patient and family members. Become familiar with different personalities and identify how they cope with various problems.
It’s never easy to completely upend someone’s life with a piece of bad news. It is especially difficult when you are dealing with someone you may have met only moments prior.
It takes guidance and experience to make that person feel like they are in good hands. With the right amount of confidence, empathy, and hope, you may find remarkable gratification in providing unwavering support when your patient needs you the most.
Our deans told us at the beginning of the third year of medical school that we would be talking with patients more than anyone else on the medical team. We would serve as advocates for our patients’ wants and needs. They said that although our medical knowledge is still limited in comparison to the doctors above us, the patients commonly remember the students more than anyone else. That is the privilege of being a third-year medical student.
It comes down to time. The residents and attending physicians have many patients to see each day. And, they only have time to briefly visit the bedside to elicit key information that affects patient care.
We are the lucky ones, we were told, we third-year medical students. While our resident is busy managing more than a dozen patients—most of whom have multi-systemic, complex problems—we are beginners, entrusted to manage a handful of patients at a time.
As beginners, it takes us more time to think through algorithms of management and treatment options. A handful of patients is plenty. Having only this handful allows us to really get to know our patients as people. It allows us to have the time to sit at their bedsides and hear their stories, beyond the details that affect their care.
Today was our “call day”. I am rotating through internal medicine. Every fourth day, our team is on call. Our team consists of one attending physician (the boss), two resident physicians (doctors in training after medical school), and two medical students.
On call day, our team accepts new patients who present to the emergency department and need to be admitted to our service. Being on call is always chaotic and always interesting. We rush around interviewing patients and figuring out what is wrong with them and how we can help.
This morning, I was assigned to a middle-aged man named Jack. He had presented during the night with worsening back and hip pain.
I rushed to the fifth floor and opened his chart. My job was to read what other doctors had written in their notes. Then, I would talk to the patient and perform a history and physical exam. Afterward, I would present my findings to one of the residents.
Jack had been diagnosed with liver cancer one year ago. It had rapidly spread to his pelvis and spine. An MRI (magnetic resonance imaging) was performed in the emergency department last night to look for cancer in his spine and pelvis.
An MRI is an imaging test used to visualize structures inside the body. MRI provides high-detail images of soft-tissue structures in the body. This makes it a good imaging choice for specific structures and diseases, such as the brain, muscles, and certain types of cancer. Because the purpose of Jack’s imaging was to look for the spread of cancer, an MRI was the appropriate choice.
The MRI revealed a new mass in Jack’s spinal cord. The neurosurgeons wanted to operate to remove the mass and prevent compression of the spinal cord, which could cause paralysis.
I opened the MRI document on the hospital computer and scrolled through the images until I noticed an unusual round mass in the lower portion of the spinal cord. The medical student part of me noted the size and location of the mass and thought about what structures might be affected by his spreading cancer. The human part of me felt hopelessness and compassion for this poor man, who I now knew had a very poor prognosis.
The surgery, the neurosurgeon’s note explained, would not cure his cancer. It was only a way to prevent the spinal cord compression. This would relieve his pain and possibly prevent paralysis in his legs. It was a way for him to have a better quality of life before his inevitable death secondary to this terrible disease.
It turns out that I had no other patients to see that morning. Further, I had almost three hours before I had to meet with my team for rounds. And then I remembered the message from my deans. Medical students are the lucky ones on the team. The ones who gets to spend more time with their patients.
As a third-year student, I get to hear my patients’ stories and get to know them beyond their status as patients with diagnoses. I get to know them as real people.
I spent the next three hours sitting and talking with Jack. As a medical student, I gathered his past medical history and the details of his current illness. As a human being, I formed a bond with a dying man, getting to know him and listening to his story as he wanted to tell it.
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https://thedoctorweighsin.com/death-informed-physicians-life/
Jack regaled me with stories about his childhood. He had been educated in a monastery as a teenager. Later, he became a Buddhist monk.
He has also traveled to different countries as a medical assistant, birthing babies, and giving medicine to those in need. He eventually moved to the U.S. to receive higher education.
Jack also told me about his wife and three children. And, I learned that he likes to drink beer socially with his friends.
He talked about his diagnosis of hepatitis. It most likely occurred because of a needle stick during his tenure as a medical assistant.
He told me that his MRI just one year ago was performed as a screening test because of his hepatitis status. At that time, he had no symptoms of any kind. The doctor told him he had a tumor in his liver that needed surgery.
He described the pain he has after surgery. And, how he was told that his cancer had spread to his pelvis. And now he was here, a man of great accomplishments, with worsening pain and worsening prognosis.
A man who had raised three children and supported his family was now reduced to a sick patient in a hospital gown, eating hospital food, totally dependent on his doctors and nurses. A man, who had defined himself in so many ways, was now being defined as a 53-year-old man with liver cancer metastasized to his pelvis and spine.
The other details of his life faded to gray in the minds of busy doctors with too many patients. But this didn’t happen to me. I am the lucky one.
With question after question and time to spare, I was able to learn about Jack’s upbringing and his fight with cancer during the past year. I also learned about the lessons that had helped him grow throughout his life.
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He also talked about how these lessons applied to his current situation. Buddhism, he explained, teaches that a person has no true belongings. For if something belonged to a person, it would do as he said. But nothing behaves that way, not even one’s own body.
“Hair,” he continued, “if it was up to us, hair would always stay black, but instead, it turns to gray, or maybe falls out completely. It is the same with the rest of my body and my liver.”
“But I still went through with the surgery last year. I was not ready to accept this fate! I was not ready to believe that my body did not belong to me. It seems I still have much to learn.”
I tucked away my pen and paper and continued to listen to his story and absorb his wisdom.
He went on, sharing his thoughts and feelings, his worries and concerns, and his outlook on his terminal illness. A dying monk from a different world took the time to teach and reflect with a young third-year medical student. It was extremely powerful.
I am fortunate to have the time to stop and listen. It was a privilege to bring Jack’s background information back from the gray into the light and to invite Jack to tell his story.
And I can only hope that by doing my part, I am helping him in some way through his difficult struggle. And for that, I am thankful and eager to fulfill this important role as we take care of patients on our medical team.
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As I progress through my medical career, I want to continue to make time to listen, not only as a physician gathering information from patients but as a human being listening and learning as I hear other people’s stories.
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This essay was first posted on 05/28/12. Republished on 9/18/17, it has been reviewed and edited for republication on 12/20/19.
“Mom, the doctor needs to know if you want to die,” were the words Maggie yelled at her hard-of-hearing 91-year-old mother, Gertrude. The emergency physician cringed to think how many other patients heard this conversation and thought he was an assailant. Gertrude demonstrated very little tolerance for being a patient, yet insisted, “I want everything done to save my life.” This was the extent of her end-of-life conversation. From now on, Maggie might insist that her mother wants to be resuscitated as many times as it takes to prolong her life.
What Gertrude wants, Gertrude gets! This is the ethical rationale for upholding patient autonomy in conversations that involve the end of life.
Many healthcare providers would argue, “These conversations should not be taking place in the emergency department.” Shouldn’t physicians be having these conversations with patients in their offices? With only 1 out of 3 patients completing advance directives, the brunt of the task often falls on ED physicians who tend to admit chronically-ill patients to the hospital with no questions asked. What’s the solution to this never-ending problem.
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Image Source: Shutterstock
Medicare is now paying physicians to speak with patients about end-of-life choices, yet physicians are not prepared for these talks. The role of a physician is to save lives and the American Medical Association just released a statement that does not support assisted dying. Doesn’t end-of-life conversation amount to assisting patients with death and dying? Are physicians being encouraged or discouraged from having these conversations?
It’s clear that healthcare professionals are having the wrong conversation at the wrong time in a person’s life because most patients are still dying in hospitals against their wishes. How can physicians change this situation – turn a negative topic into a positive outcome and helping chronically-ill patients become human beings at the end of life?
It’s simple – stop talking about ending life and begin discussing strategic aging.
Prioritize Quality of Life . . . by listening to patients’ stories
Manage Chronic Illness . . . by telling patients the game plan
Appreciate Palliative Care . . . by describing what to expect
In the emergency department, physicians listen to patients’ stories, tell them the game plan and describe what to expect. By not sugarcoating reality or adding false hope, very few patients are disappointed with their emergency room experience. This same principle can be applied to discussing strategic aging.
A good story follows the same format of describing the Who, What, Where, When, Why and How of pertinent facts. Strategic aging incorporates the facts with helping patients create a narrative and direction for the end-of-life journey:
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Who ages rapidly? The following list of no-no’s highlights silent killers that often support and sabotage quality of life:
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Quality of life means many things to many people. Yet the goal of strategic aging is to unmask one aspect of the person that describes his or her ability to be self-determined and in charge of medical decisions. “I’m a black-belt.” “I was a referee (I’m used to calling the shots).” “I practice yoga.” Is there any doubt who these people are and what quality of life they enjoy? By connecting patients to their identities, physicians might use this information to guide patients through the aging process. By saying, “You know who you,” physicians can bring out the best qualities of the patient and promote self-determination in life-and-death decisions.
When is the best time to have “the talk?”
Where do most people experience the end of life?
Approximately 80% of Americans prefer to die at home. If that 60 % of patients who died in the hospital had received home-based palliative care, the statistics would match patients’ wishes.
If people frequent physicians’ offices or ED’s during a three-month period, we might as well face it – they’re addicted to being patients. This is a concern for everyone involved. Like with alcoholism, relationships are often destroyed and patients feel increasingly isolated. No one wants to treat these individuals who often feel burdensome.
Why are seniors afraid of aging?
How do most lives end each year?
By including palliative care in the discussion of strategic aging instead of at the end of life, physicians help patients better understand why and how it might benefit them sooner than later. When patients have a terminal diagnosis, they need support systems in place. Palliative care aligns with pain management and holistic care. It adds the necessary spiritual approach to treating medical conditions and supports the “less is more” philosophy.
With age, many people become defensive, fearful and demanding – unlike themselves. They are prone to want everything done despite their insufferable pain and poor quality of life. How physicians can assist patients in acting in their best interest is by showing compassion. Yet, how physicians address the end-of-life conversation can be awkward. Discussing the facts of life is uncomfortable until you create an effective strategy, suggest its normal and make it personal. Patients need to connect having a good story with the experience of both their life and death.
By having patients tell their stories and incorporating their purpose and goals into strategic aging, a win-win solution is achieved. Also, hospital readmission rates will decline while physician-patient satisfaction scores rise.
On Saturday, the 5th of November, 2011, my life fell apart when my only son Tyler left this world. Nursing errors led to his unexpected death.
One week before, on the morning of October 28, I received a phone call that no mother ever wants to receive. I was asked to go immediately to the hospital. And when I arrived, I was told that Tyler was found unresponsive and had suffered two cardiac arrests. I never got to speak to Tyler again.
Those days will forever be etched in my memory. While my heart will always ache from the loss of Tyler, I am telling his story in the hope that it will help prevent similar tragedies and that no parent will have to endure the pain of losing their child to nursing errors and unmonitored use of patient-controlled analgesia (PCA) pumps.
In October 2011, Tyler’s lung collapsed for the second time that year. A collapsed lung occurs when air or gas leaks into the pleural space that separates the lung from the chest wall, and which may interfere with normal breathing.
The first time it happened, he was hospitalized, had a drain inserted, and that fixed the problem. The doctors, who performed this procedure, said that as Tyler was tall, young, slim, and male, it could happen again as his body type can be prone to this condition.
Unfortunately, it did happen again. However, this time, Tyler was not in as much pain and knew the signs of a collapsed lung. A visit to the local emergency department confirmed that he indeed had suffered another lung collapse.
After an overnight stay, the doctors said that Tyler would probably again suffer from this condition. So, they advised a procedure to prevent this from continually happening. This procedure, called pleurodesis, is a common procedure that permanently obliterates the pleural space and attaches the lung to the chest wall, thus preventing the reoccurrence of a lung collapsing.
The operation took place on the 26th of October. After the successful operation, Tyler was being cared for in the high dependency unit. That unit is where patients can be cared for more extensively than in a normal ward, but not to the same extent as that in the intensive care unit.
In order to manage the pain from the operation, Tyler was placed on a patient-controlled analgesia (PCA) pump. A PCA pump delivers the amount of opioids prescribed by the doctor—no more or less. I was told PCA would allow Tyler to obtain relief when he felt that he needed it. In Tyler’s case, it was morphine, a narcotic pain reliever commonly used to treat moderate to severe pain.
Tyler was doing so well that the very next day (the 27th of October), he was transferred to the general floor of the hospital and it was here that the nightmare began to unfold which led to the worse tragedy.
The very next morning, Tyler was found unresponsive and suffered two cardiac arrests.
How could such an event have happened? Aside from the collapsed lung, Tyler was young and in excellent health.
I understand that death from a collapsed lung is extremely rare. Researchers say the annual mortality rate is 1.26 and 0.62 deaths per million person-years in men and women, respectively. Yet, the coroner declared Tyler died from “natural causes” and “sudden adult death syndrome” (SADS).
According to Cardiac Risk in the Young, SADS can be described in these words:
“After an unexpected sudden death, it is usual that the coroner of the area, where the death has happened, will ask for a post-mortem to be performed. This involves the body being examined by a pathologist. Small samples of tissue from organs including the heart are often taken and examined under a microscope. Usually, the pathologist can easily detect any abnormality like significant coronary artery disease (furring of the arteries) or pulmonary embolus (a clot on the lung). The coroner will take into account the circumstances of the death and, if necessary, will do tests for signs of any medications, or drugs in the body. If it is difficult to assess the heart or to detect any abnormality in it, the pathologist may ask for the help of an expert cardiac pathologist (one who specializes in the heart) to determine the cause of death.”
None of this fits and explains what happened to Tyler; nor did the coroner describe it in this way. I feel that this is an absolute insult to Tyler and that he has been let down by our healthcare system. Why do I say this?
The hospital has made a “partial admission” that the nurses failed to care for Tyler in the correct way. The nurse that was caring for Tyler the night of October 26 and into the morning of October 27 was not adequately trained to care for a patient using a PCA. She had only completed half of the required one-day training.
Moreover, an internal investigation has shown that this nurse did not check on Tyler since 9 PM that night nor did she check on him two more times as she was required to do after that. However, the nurse did notice that Tyler was speaking on his cellular phone at midnight.
Tyler’s girlfriend has confirmed that it was with her that he was speaking, but that Tyler seemed confused and disoriented. The nurse also noticed that when Tyler fell asleep, he snored so loudly that the other patient in his room complained of the noise. I have since learned that what this nurse clearly missed was the onset of opioid-induced respiratory depression.
Tyler had never before received opioids in his life, and The Joint Commission (the hospital accreditation body in the United States) recommends taking “extra precautions with patients who are new to opioids or who are being restarted on opioids.” His dosage of morphine had just been increased and, surely, that would have been a change in treatment that would have required her taking extra precautions.
Additionally, patients who receive opioids are particularly vulnerable when they sleep because health experts say that “the protective wake mechanism for airway support and respiratory drive is absent.” This placed Tyler particularly at risk when he fell asleep after midnight.
Although Tyler’s snoring was bothering his roommate, it was also a sign that he might have had obstructive sleep apnea, which occurs when breathing is interrupted by a physical block to airflow despite the patient’s attempt to breathe, and snoring is a common symptom.
There were also obvious signs overnight that Tyler was suffering from respiratory depression but nothing was done.
Moreover, I now know that there exist electronic monitors that would have alerted Tyler’s nurse and other caregivers to his declining respiratory state.
The Anesthesia Patient Safety Foundation (APSF) was established by the American Society of Anesthesiologists to “improve continually the safety of patients during anesthesia.” APSF’s president, Robert Stoelting, MD states:
APSF recommends that monitoring be continuous and not intermittent, and that continuous electronic monitoring with both pulse oximetry for oxygenation and capnography for the adequacy of ventilation be considered for all patients.
Pulse oximetry monitoring would have determined that the oxygen saturation of his blood was declining. Capnography monitoring would have measured that the carbon dioxide level in his blood was rising. Both signs of impending respiratory depression.
I fully believe that if Tyler had not been on morphine or using a PCA that he would be here with me now.
If Tyler’s nurse had received complete training on PCA, perhaps he would be alive today.
Had Tyler’s nurse checked on him as she should have between 9 PM that night and the following morning, he might still be alive.
However, even though she didn’t check on Tyler, had he been monitored continuously with oximetry and capnography, as the APSF recommends, this nurse would have been alerted to his declining state and might have saved him.
I do not believe that Tyler’s nurse meant him harm, yet, this is what happened.
I implore hospitals to train your staff properly. Make sure they know fully how to operate the equipment they connect and use on patients. Make sure that they have the tools like pulse oximetry and capnography to monitor patients receiving opioids.
Above all, make sure that another mother does not suffer the anguish and grief over the loss of her child, all because you failed to train and use the technology available today.
Thanks to Michael Wong, Executive Director of the Physician-Patient Alliance for Health & Safety for sharing Victoria’s story. This story was first published on March 13, 2017.
With his place among history’s greatest writers cemented by War and Peace and Anna Karenina, Leo Tolstoy published a gem of a novella in 1886 titled The Death of Ivan Ilych. In the few pages of the novella, we follow the last days in the life of this member of the Court of Justice whose life had been “most simple, most ordinary, and therefore most terrible”.
Ivan Ilych was the second of three children of a mediocre official – for whom “posts are specially created” since he could not be dismissed. He followed his father’s footsteps into public service. Eventually, he met and married Praskovya Fedorovna who “came of a good family, was not bad looking, and had some property”. They lived seventeen years together and had two surviving children. By the time of his death, the girl was sixteen and the son “a young boy”. Tolstoy is quite brutal in describing their middle-class existence writing that their house “was just what is usually seen in houses of people of moderate means who want to appear rich, and therefore succeed only in resembling others like themselves”.
Their lives proceeded as scripted until the first signs of illness appear with “a queer taste in his mouth and some discomfort in his left side”. On the way back from the first doctor’s visit Ivan started to feel his condition was “very bad” and started to watch the world “with a new and oppressive feeling.” As his condition worsened, Ivan Ilych looks for ways to treat his illness with a variety of doctors, one who diagnosed a floating kidney, another an inflamed appendix, until one day Ivan himself realized: “It’s a not a question of appendix or kidney, but of life and…death.” At the moment a realization paralyzed him:
“When I am not, what will there be? There will be nothing.”
He also notices that, as he is deepening this sense of his own ending, others around him go about their lives – including his own daughter and wife. Eventually, Ivan himself admits that dying would “release the living from the discomfort caused by his presence and be himself released from suffering.” As his condition continues to deteriorate he starts to require help “for his excretions” and in that he finds unexpected solace in the figure of the Gerasim, a “clean, fresh peasant lad, grown stout on town food and always cheerful and bright”. Gerasim is a no non-sense simple soul whose straight and honest attitude holds great contrast to the dissimulation of Ivan’s colleagues and even his family. Fed up with what he perceives as their “deception” Ivan comes close to calling out:
“Stop lying! You know and I know that I am dying. Then at least stop lying about it.”
Except “he had never had the spirit to do it.”
The only one willing to acknowledge what’s happening, in Ivan’s eyes, is Gerasim. One day as Ivan asks Gerasim to stay a little late to comfort him he hears:
“If you weren’t sick it would be another matter, but as it is, why should I grudge a little trouble?”
Gerasim even comes to the point of saying:
“We shall all of us die, so why should I grudge a little trouble?”
Which Ivan interprets as him saying he was “doing it for a dying man and hoped someone would do the same for him when his time came.”
With the continuation of his illness, he finally finds a moment where he can be alone and cry. As he wept an inner dialogue clarifies his fears and concerns – including “his helplessness, his terrible loneliness, the cruelty of man, the cruelty of God, and the absence of God”. His inner dialogue is a good draft of an existential coaching session.
“Why hast Thou done all this? Why hast Thou brought me here? Why, why dost Thou torment me so terribly?” and continues “What is this for? What have I done to Thee? What is it for?”
To which his inner voice responds:
“What is it you want?” which is a very powerful question.
Ivan replies: “to live and not to suffer.”
And his inner voice asks for more: “To live? How?”
“As I used to – well and pleasantly.”
These questions lead him to examine his life’s path, from childhood to Law School, to marriage, and his “official life and those preoccupations about money” on and on, “always the same thing.” Which brings him to the terrible realization:
“It is as if I had been going downhill while I imagined I was going up…I was going up in public opinion but to the same extent life was ebbing away from me.”
And the awful conclusion:
“Maybe I did not live as I ought to have done.”
It’s just too late.
Existential psychology has its roots in philosophy, first with Kierkegaard then with the 20th-century existentialists including Heidegger and Sartre, who famously proclaimed “we are condemned to freedom”. In psychology and psychotherapy, the main contributors are Viktor Frankl, Rollo May, and Irvin Yalom. Frankl’s experience in concentration camps – recounted in the classic Man’s Search for Meaning – consolidated his ideas around the key role meaning has in human life: “striving to find meaning in one’s life is the primary motivational force in man”. May emphasizes courage and freedom in his work, saying in Man’s Search for Himself: “Freedom is man’s capacity to take hand in his own development. It is our capacity to mold ourselves.” In his book Existential Psychotherapy, Yalom lists four major themes to be explored:
In summary, from an existential perspective, we are subjectively alone, free to create ourselves in this one life we have, craving for meaning and purpose, and aware of the presence and inevitability of death. These feelings of isolation, the responsibility that comes with freedom, the fear of meaninglessness, and the dread of death, can all conspire to create anxiety and at times despair. Overcoming these, at times taking solace or even pleasure in our conscious isolation in the universe, in our freedom to be – and create ourselves, and in our time-constrained nature, can replace this profound sense of existential despair with a sense of mature and self-aware joy of being-in-the-world, here and now.
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Each of the four existential themes can help us approach Ivan Ilych’s difficulties with his process of dying and can help coach him towards a better resolution. He had the freedom to choose his life and that’s why the question “Maybe I did not live as I ought to have done” is so terrifying. He is alone in his suffering, unable to share the subjective experience of dying; and this loneliness is compounded by his inability to communicate with those around him. He is searching for a final meaning and purpose of his existence. Finally, he’s facing not-existing, he’s facing death itself.
By using direct communication, the coach would avoid the dissimulation – which comes from the denial of death – that so irritated Ivan in his deathbed. By active listening, we could pick up his concerns about dying, his worries about his own choices and path in life. With powerful questioning, we could follow his self-discovery and help him understand those choices and their outcome – mainly his family and his job. One example of powerful questions would be:
“If you were not pursuing the life you did, what would be doing instead?” or “What is it that you would like to say to your wife?” or to his children, or to his friends? In challenging him to action we could rehearse some of these dialogues with him.
Someone with coaching presence, being spontaneous, flexible, and confident, would provide relief from the dissimulation Ivan feels around him. In the story, the one who comes closest to that coaching presence is Gerasim – and it’s palpable the effect it has on him.
Pondering about the use of existential perspective in coaching makes one realize the incredible potential coaching has to help us help one another. Being a therapist and psychiatrist for twenty years, I can attest to the power of the therapeutic relationship. I am also restricted by medical necessity and the medical model.
In coaching, we are free from those restrictions and thus able to help people without the need to designate them as patients. As a therapist, that’s liberating. Using the existential approach allows one to go beyond the traditional coaching topics, usually work or personal conflicts, and expand to an authentic deeply human conversation. It’s possible the existential perspective will help inform coaching efforts in end-of-life conversations, within hospice populations, for example, allowing for those people to die with dignity, not only free of physical pain but also relieved from some existential angst in their final moments.
When I returned home from a dizzying day of orientation to medical school, its shiny black corpse was waiting at my doorstep. It lay glistening in the heavy August sun, like something wet and brand new, in place of the welcome mat I had meant to roll out. I took it as a bad omen—a dead black bird at my door, at the end of the first day of my career in medicine, could not be considered good, or even neutral. To have to begin this endeavor towards becoming a healer with such a confrontation seemed unfair and unbefitting. I almost blamed that stone-still creature for choosing that particular spot to die.
My mother, who was helping me move-in, put on gloves to bury the bird in the backyard. We had had some experience with this careful ritual. Over the course of my childhood, we had buried three pet parakeets. I helped dig a small hole in a clear patch of dirt, while my mother wrapped the round black body in a cloth. She laid it down, and I settled the dirt back over it, patted it down until it was nearly flat. As I patted, I could feel its hard, sloping belly beneath the tips of my fingers. It was a strangely intimate process, this burying business. We burned some incense and planted the sticks into the earth when we were done. For a while, the twigs that remained from the incense marked the spot. They stood tall and straight, like soldiers keeping vigil.
As the school year trudged along, a few stray weeds slowly invaded the formerly bare patch of dirt. Squirrels, and sparrows, and at least once, a stray cat, scampered across the dead bird’s territory. I sometimes worried that one of these small visitors would disturb the dead bird. Uproot him. The incense soldiers, after all, were no longer there to protect him. Somehow, this bird, whose lifeless body I had once resented, seemed to need protection now that it lay helplessly in the ground. Burying the bird had not at all buried my consciousness of him. On the contrary, it had heightened it.
It was not until the end of a six-month long foray into human anatomy and dissection that I finally realized a corpse is not a bad omen; a corpse is a gift. Initially, there were days when I resented my cadaver the way I had resented that black bird. I resented him for, in some way, contributing to the responsibilities and hardships of medical student life. And, more than that, for imploring me to consider mortality, that of others and my own, on a nearly daily basis—a mentally and emotionally taxing task.
On the day we met for the first time, I resented him most for exposing my lack of manual dexterity. I watched as one of my tablemates made the first, rather unceremonious incision. He began to peel away a flap of skin on the cadaver’s back, exposing an underlying layer of fat. He started at a corner, and made swift, controlled swipes, separating skin from the dimpled, yellow tissue beneath. Soon, my other tablemates set to work. So, with a dainty pair of tweezers and a blunt blade as my only weapons, and a thin layer of latex as my only shield, I, too, began to peel.
Instead of a tidy square flap, I ended up with multiple, unsightly strips of skin. Sometimes my slicing was too deep, sometimes too shallow, and it wasn’t until the next session that I would understand how little it actually mattered. The whole layer of fat was going to come out one way or the other, and there was no need for grace or elegance in that. It was the muscles underneath that mattered most.
On another occasion, I held my cadaver somewhat responsible for earning me the reprimands of a lab professor who circled around the room like a vulture surveying the scene. “Haven’t I warned you about how to hold the tools?” he sighed. Visibly irritated, he proceeded to lecture my tablemates and me (but mostly me) about the ills of poor scissoring technique and the barbarism of “palming” one’s forceps, which refers to burying the end of the forceps inside your palm, instead of letting the end stick out between your thumb and index finger, like the end of a pencil.
He said it was not “civil” to hold the instruments in any other way. The very foundation of the task at hand seemed to me wholly uncivil. But, in truth, I understood and appreciated his point. It was not a piece of cardboard I was cutting through or colonies on a petri dish that I was picking at. It was a fellow human, dead or alive, aware of what I was doing, or not. And though I wanted to blame my cadaver for putting me in the line of fire, I was mostly disappointed in myself for not having the sensitivity to understand that without being told. For defiantly holding my tools in whichever way felt the least awkward, forgetting that professionalism is often defined by the details.
Little by little, cut by cut, I slowly began to accept the presence of this body in my life. I learned to respect my cadaver, to allow him to make me feel uncomfortable, and, eventually, to consider him my accomplice rather than my adversary. When I gave up on trying to master anatomy outright, and gave in to confusion and uncertainty, I found that every time I touched my cadaver he presented me with a new challenge. Every peeling back of skin, every shifting of organs, every delicate scissoring, revealed something both beautiful and fascinating.
The intricacy of the nerves that clung to the hand, or to the bones of the cheeks, left me in awe, while some of my tablemates were more enamored by the larger structures—the enormity of a soft clean lung or the contents of an infected kidney. The sophistication of the sympathetic trunk, the simplicity of the intestines, and the eerie resemblance of the brachial plexus to the organization of a tree never failed to captivate us. Every inch hid a secret to be uncovered. Our cadaver told a relentless story, and as long as we learned from him, we seemed to be keeping him animated. Each fresh incision rendered him not more definitively dead but rather, more assertively alive.
We had begun the year almost afraid to actually put our hands on our cadavers. We strove for precision, following lab manuals and instructive video clips with an exactitude rivaling that of architects or engineers. But the more we probed, the less certain we were. We discovered the only thing we could really be confident about was the impossibility of perfectly mapping the human body. All the digitally enhanced images, the cleverly angled illustrations, the pinpoint labels, were not as sure of themselves as they wanted us to believe. In fact, these resources provided, at best, a series of landmarks. A trail of hints but not answers. Because, in truth, nothing looked the same in any two cadavers, and there were innumerable anomalies and variants and surprises.
Nor was anything as clean and tidy as we had initially anticipated. There is, in fact, nothing sterile about the human body. We could wear two sets of gloves with a layer of soap in between, and we could don our goofy-looking aprons over our scrubs, and we could wrap our cadavers in as many wasteful layers of gauze as we wanted to. But things were bound to get messy. Someone was bound to get a piece of fat in her hair, and someone was bound to breathe in a cloud of bone dust, and someone was bound to get splashed with a strange mix of preservatives and body fluid while flipping the cadaver over. At some point, we were so intimately connected with these cadavers that such unpleasantness became only that—an unpleasant yet trivial inconvenience.
But just as we had taught ourselves to form an attachment to our cadavers, to trust them, and to let them teach us, the day also came when we had to learn to let them go. The day we assembled long cardboard boxes for our cadavers, the lab rooms were a flurry of simultaneous elation and confusion. Elation from the feeling of accomplishment that comes with having conquered, at least theoretically, human anatomy. And confusion from the uncertainty of whether or not we were doing this the right way—this ritual packaging of cadavers. Which half of this cardboard is the lid, and which is the base? Is that tie knotted tightly enough or does that wall of the box look like it might collapse when we try to put our cadaver in? What’s the best way to lift the cadaver into it? Where’s the marker to label the box? It had to be done right.
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I was reminded then of my little black bird, over which a vibrant crop of mint had sprung up. I was reminded of how burying him hadn’t helped me forget him but had, instead, forced me to remember him. By putting my cadaver in that cardboard box, I haven’t removed him from my mind. Instead, with my cadaver stowed away, I know not where he has begun to grow within me. As the mint continues to spill over that formerly bare patch, and as new experiences pile on over the memory of anatomy lab, that bird and my cadaver will always be there, forming the foundation for new life and new knowledge.
This essay was first posted on 07/08/13. It was reviewed and republished on 9/18/2017.