Tall and lanky with delicate hands, long fingers, and a thin face, Alvin had lost 80 pounds in the prior six months. Previously the size of a high school football player, he had transformed into a scarecrow. At 16, he was dying of a rare form of intestinal cancer.

I was his doctor during the last two months of his life.

As an attending pediatric hospitalist, I met Alvin a few years after finishing my residency in combined Internal Medicine/Pediatrics. I had not completed a rotation in pediatric oncology or palliative care and so had to rely on my experiences in adult oncology wards.

Besides the incessant pain, Alvin complained that he was always very tired, nauseous, and lacked an appetite. I promised him that I would try my best to keep him comfortable and relieve his symptoms. It was clear to me that I would need help, and a lot of it, to fulfill my promise I asked my colleagues in pediatric and adult oncology, radiation oncology, and pain management, to share their opinions about Alvin’s case.

Little did I know how challenging my promise would be to fulfill.

During Alvin’s first 24 hours in the hospital, the specialists offered unanimous opinions: Alvin would not benefit from further oncologic treatment—palliative care was the best and most useful care we could offer him. I agreed. Alvin’s cancer had already broken through two courses of chemotherapy, had proven to be insensitive to radiation therapy, and had already encased vital blood vessels in his abdomen making surgery an impossibility as well.

On the afternoon of his second day in the hospital, Alvin’s father arrived. I thought it odd that neither of his parents had been with him until then, especially given that he was so ill. I did not know what to expect.

I introduced myself to Alvin’s father, only to receive passing attention and a faint nod in reply. I asked if Alvin’s mother was going to arrive soon.

“Mom’s not around,” Alvin’s father matter-of-factly retorted, this time making eye contact with me.

“Will she be around any time today?” I queried. “I can work around your schedules.”

“No.”

“When will she be available?” I asked.

“I take care of Alvin alone. Mom’s been out of the picture for a long time.”

“So, it’s just you and him?”

He sarcastically replied, “Mmm hmm.”

“Ok then, let’s talk….”

My intent during this exchange was simple — I needed to share the really bad news with the family, and I needed the entire family present. I was not interested in prying, just doing the right thing. Yet I felt defensive from the starting gate. Was Alvin’s father’s curtness baseline orneriness or cultural quirk? Was he frustrated with questions having to do with Alvin’s mother, with any questions coming from doctors, or simply with his son’s situation? Where was this exchange going given its poor start?

The next ten minutes bordered on the surreal. A soliloquy on my part followed, despite numerous efforts to elicit a response from Alvin or his father. As I summarized the collective medical opinions, I noticed there was almost no interaction between father and son. When their eyes did meet little perceptible warmth was detectable between them. I ended with the statement, conveyed as gently as possible, that the concept of treatment for cure or extension of life was futile, and that the focus had to be on palliation.

Just as I finished speaking, Alvin’s father abruptly broke his silence and matter-of-factly stated that he wanted everything to be done for his son: chemotherapy, radiation therapy, nutritional support, and physical rehabilitation. He added, equally unemotionally, that he did not want to hear about palliative care or hospice again. Alvin was silent.

His insistence stunned me and prompted me to ponder to whom am I responsible? When the patient is a minor, must a parent’s wish prevail? I felt strongly that I would be breaking my promise to Alvin if I honored his father’s directive. Why were such scenarios not discussed in medical school? How does a doctor respect all parties and yet also “do no harm” to the patient? These questions swirled in my mind continuously during the next two months I treated Alvin.

I tried to stay true to my promise to Alvin while navigating the unreasonable demands of his father for aggressive treatment. It proved impossible.

During this time, the only witnessed emotional support Alvin’s father gave to his son was blandly telling others that “Alvin would be OK” in his son’s presence. However, it was painfully clear to everyone involved in Alvin’s care that he was suffering. Despite this, Alvin never articulated a syllable of dissent and deferred to his father regarding his care, whether out of fear or respect I was never able to determine, even when asked outside the presence of his father.

Soon after being admitted, we began experimental chemotherapy— Alvin tolerated it for only two days after almost dying from gastrointestinal bleeding and diarrhea. He had constant headaches, back pain, and rib pain. It hurt him to breathe, it hurt him to move. Physical therapy, despite Alvin’s father’s demands, could never be initiated.

The already reduced body mass with which Alvin had arrived continued to decrease since he had no desire to eat. Tube feedings of different kinds were attempted, again at the behest of Alvin’s father. They were uniformly unsuccessful.

In tandem with our pain management service, I tried to treat his pain with combinations of drugs at doses that would render a healthy person unconscious for days. This still only provided inadequate pain relief. My and the care team’s repeated efforts to convince Alvin’s father to invoke palliative sedation to relieve Alvin’s pain were ignored. He did not want his son to be made unconscious by our treatments. Any overtures to the hospital’s ethics committee to try and override Alvin’s father’s wishes were thwarted—Alvin was a minor, now with questionable and wavering decision-making capacity, and was completely deferential to his father’s wishes.

Over time, Alvin’s bones jutted out from his skin more and more. Pressure ulcers formed on his buttocks, heels, and elbows, despite the use of an air mattress and aggressive efforts by our nurses to prevent this very complication.

About six weeks into his admission, I noticed that one side of Alvin’s face was more flaccid than the other. This progressed over the next few days to his having problems pronouncing certain sounds, and then losing the ability to swallow. During this same time, his eyes began to slowly jut out of his eye sockets and lose their vital glint. I knew that metastases, the ones causing the incessant headaches, were causing this, too.

Alvin continued to deteriorate and his room took on an odor, not related to any bodily functions, personal hygiene, or substances used to clean the room. It could only be described as the smell of Alvin’s tumor burden eating him alive. Every time he exhaled, more of this invisible, foul humor emanated from his open, parched mouth, filling the room with a smell that was a cross between vomit and burning flesh.

Throughout Alvin’s hospital stay, any discussion with Alvin’s father about the status of his son was colored with a thick patina of unreality. I did not sense magical thinking on his part. At no time did he invoke any religious or spiritual explanation for his approach either, and he refused any visit from our pastoral care department outright. The best I could come up with was that simply, inexplicably, Alvin’s father was robotically able to ignore the very real suffering of his son and navigate his care accordingly. This, despite every effort the team made to prepare him for the inexorable to come.

The nurses who cared for Alvin attended to him with great compassion. However, we did not take care of many pediatric oncology patients on this floor, so the emotional toll of caring for this dying child, exacerbated by his father, took its toll on the nurses. Alvin’s father was often hypercritical of how the nurses cared for his son, often forgetting to say thank you but never forgetting to criticize them for trivialities. One nurse, tasked with his care, was a recent nursing school graduate who had chosen specifically to be a pediatric nurse and Alvin was one of her first patients. I witnessed the depletion of her emotional reserves day by day. Many of the seasoned nurses tried to bolster her up, but they were becoming emotionally frayed as well, particularly so as the final days of Alvin’s life rapidly approached.

About a week before his death, Alvin was suddenly more alert, aroused by a new pain that rose above the baseline din of his other pains. This new pain came with an insidious bonus—it made it harder for him to breathe. The new pain was located along his lower right chest wall, close to the bottom of his rib cage in the front. His ability to inhale was impaired now, this made obvious by the unevenness of movement between the right and left sides of his emaciated chest. I shuddered and paused—how much suffering could one person take? Now, a tumor mass engulfed one of his ribs and tore it asunder. It was making every breath an ordeal as the frayed ends of the once intact bone rubbed against each other and caused lancinating pain. All we could do was raise the absurdly high doses of his pain medications that remained inadequate. It was only now, as we kept increasing the dosages of the pain medications higher and higher, and Alvin’s breathing progressively got slower and slower, that Alvin’s father stopped ignoring our daily requests to change Alvin to “do not resuscitate” status. He finally agreed three days before Alvin died.

The night he died, Alvin was receiving hourly amounts of pain medication that were ten to fifteen times the upper limit normally given for someone his weight. His respiratory rate was six breaths per minute, enough to convey a tenuous connection to life and move enough air to moan. His left eye was jutting out of his eye socket precariously, the left side of his face was without contour. At about 11:30pm, Alvin’s breathing began to slow down, and his hands and feet began to turn bluish. After another hour, his yellowish skin became much paler and his breaths less frequent and much shallower. He died at 12:45am.

His father was not there.

Later that morning I found out Alvin’s father consented to have an autopsy done on his son. While Alvin’s cause of death was clear to me, and I had already visualized in my mind’s eye the anatomic tumor invasions he had endured in his last weeks, I needed to be at this autopsy: I needed to actually see my cellular opponent and the damage it caused, this while the feelings of anger, disappointment, and despondency regarding this case still roiled inside of me.

I also found out later that morning that our newly minted nurse, whose emotional reserve was being particularly depleted while caring for Alvin, asked to be transferred to another unit, citing the emotional distress of this case as the reason for her request.

On the way to the morgue that afternoon, I saw Alvin’s father in the distance. Initially his back was to me, and then he turned around. Our eyes met, and in the couple of seconds that passed, I hoped that for a fleeting moment some shred of emotion would be communicated by him—sadness, anger, relief, understanding, anything. All I got was a blank stare in return. He turned and walked away, and I, not surprised but disappointed nevertheless, continued to the morgue.

After gowning up, the autopsy technician started his work. The tumor metastases were light tan, fleshy, with a pinkish tinge to their surface reflecting their success at achieving an independent blood supply. They were innumerable and ubiquitous, visible or palpable on every bony surface revealed by the technician’s knife or saw. The inside surface of Alvin’s skull was riddled with tumors, as were his eye sockets and the base of his skull: it was now plain to see why he had constant headaches and why his eyes were being forced out of their sockets. His spine was macerated and moth eaten by tumor in various stages of growth and regression, more like a cat’s chew toy than the pillar along which a person’s stature depends. I saw his rib cage, peppered with tumor masses that looked like barnacles stuck to the side of a ship, and the lower right tenth rib was broken by a solitary tumor several centimeters in size completely encasing the bone, no doubt the cause of the sudden rib pain that was the penultimate event prior to dying. The genesis of his ordeal, the tumor located in his ascending colon, encased and distorted it beyond recognition. It was plain to see that Alvin’s road to death was ineffably horrific, and that we were unreasonably limited and rendered impotent in our ability to mitigate even a small portion of his suffering.

Alvin’s death was the only modicum of closure achieved by anyone involved in his care. All that remains from this experience are haunting recollections that I was part of an exercise in unnecessarily flogging a dying teenager, leaving a large hospital chart and bad memories in its wake.

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