Trauma, Death, and the Big Picture

In reading this eulogy of Steve Jobs written by his sister, I was tickled to learn that on his ICU bed, Steve was inventing hospital gadgets.
One time when Steve had contracted a tenacious pneumonia his doctor forbid everything — even ice. We were in a standard I.C.U. unit. Steve, who generally disliked cutting in line or dropping his own name, confessed that this once, he’d like to be treated a little specially.

I told him: Steve, this is special treatment.

He leaned over to me, and said: “I want it to be a little more special.”

Intubated, when he couldn’t talk, he asked for a notepad. He sketched devices to hold an iPad in a hospital bed. He designed new fluid monitors and x-ray equipment. He redrew that not-quite-special-enough hospital unit.

For the really big, big things, you have to trust me, he wrote on his sketchpad. He looked up. You have to.

By that, he meant that we should disobey the doctors and give him a piece of ice.

I just came off my first overnight call in the Trauma ICU, after working 31 hours straight. This sketch of Steve is just like the patients I’ve met this week: can’t eat, can’t breathe, can’t move, but would like to go back to skydiving ASAP.

I think there are generally two types of ICU patients. There are the vegetables subsisting on life support, and the rest are feisty. The bull-rider with multiple spine fractures insists on bull-riding again the next day, even as he struggles to sit up. The teenager, whose ATV accident required brain surgery, asks me every hour whether we can take out the tube draining the bleed within his skull: “Will it be later today? Not ’til tomorrow? I can’t sleep with this thing coming out the back of my head.” As I write this, a man whose brain is exposed by gaping holes in his head, is trying to pull out every IV and monitor and walk right out of the hospital.

It seems as though these patients have an entirely different set of priorities than their doctors have for them. We want to manage their fluids and electrolytes. We want to make sure they have an airway. We want to save them from dying of pneumonia, of ischemic bowel, of cardiac arrest. But all they want is to continue whatever they were doing that landed them in the hospital in the first place. Don’t they learn from their mistakes, and don’t they realize that they can’t live without these devices and measures we are taking for them?

But as damaging as it can be to a doctor’s ego, I get it. I don’t believe our work is more important than the lives we save. We bring out the defibrillators and ventilators to make people continue living, but that is not what I consider “saving a life.” People don’t live to have normal potassium levels measured in their blood. People live to bull fight, to dirt bike, to invent computers, to be home with their family.

Obviously the basic needs have to be met in the hospital. It can be a cruel process, and patients may not get that ice cube after they’ve already starved for days, but we take great consideration in the treatment plan and believe that what we’re doing is for the best. But after the healing is done, when bodily functions return to baseline, then what? Our story ends with the hospital discharge.

But the hospital discharge is the beginning of a longer road to recovery and life. Lots of changes and arrangements have to be made at home. The patient may be a burden to their family for a long time yet. That is why, beyond getting to leave the hospital bed, my hope is that these patients can survive to the next time they can do what brings them joy, whether it’s strapping on a parachute or bouncing their child on their knee. To me, that’s when their life has truly been saved, not a moment sooner.

Passage

A husband and wife were about to bring their baby into the world. She lay across the surgery table. He sat with scrubs, cap and mask, anxiously waiting by her side. She grinned, even as her eyes glistened with tears. He spoke reassuringly as he squeezed her arm.

They had imagined this day over and over. Within minutes, with this birth, their lives would change forever.

A curtain of sterile draping fell between her head and abdomen, separating the excited parents from the hectic operation about to take place on the other side.

It was my first day in the OR since Anatomy dissections. She looked strikingly like a cadaver, except that she actually bled—multiple suction tubes flooded with blood. The OB with a flock of residents were frantically cutting, digging, and cauterizing.

“This is the uterus,” they held up something huge and nodded at me. When they pierced it, amniotic fluid gushed out as if a hose had exploded.

From the chaos they pulled out a small bundle. The nurses rushed to it with a bulb syringe and sucked the fluid from its mouth. Then it began to cry.

The dad stood up when he heard the sound. First his head emerged above the curtain, and then a video camera pointed in our direction.

I gasped. Everyone froze. Without missing a beat, the doctor held up the baby, smiling at the camera. Nurses quickly wiped off the blood. Then they swept the baby off to a table along the side of the room, and the video camera followed.

Work on the mother resumed. Placenta out, uterus closed, skin stapled.

The whole thing only took about 20 minutes. Nothing went wrong. It was a great case for a first-time medical student. And I found it to be horrific.

Only a thin veil separated the family’s experience from ours. For them, a beautiful beginning of a new life together. For us, cutting and sewing and blood and guts. I almost felt it was out of place to say congratulations.

This is how I was born into the world of Medicine. I was thrown in headfirst, unprepared and alone. I would learn, over the years, that some of life’s most precious experiences—birth, healing, death—are gruesome. I would witness many more than my share of such moments, again and again, as part of the routine of my career. I would struggle to find the beauty in the madness of this reality. Yet I would find it.

Running With IV Poles

I wish I could show you a picture of this young couple huddled over the side of a crib. Their faces were clouded with deep concern. Their baby had spent the greater part of 4 or 5 years in various hospitals, for treatment of a multitude of problems. His endocrine problem, which brought us into the treatment team, was the least of these. Even though we were only monitoring one lab value, we came by to check on this little patient every day. Every single time, we walked into this same scene with his devoted parents huddled over his crib.

I wish I could show you a picture of this child. Like so many Pediatric Endocrine patients, he was tiny for his age. He lay floppy in his bed, barely able to move his claw-like limbs. And he had these fascinating buggy eyes that seemed to stare in opposite directions.

Parenting is complicated, of course. There are many tremendous tasks associated with caring for a child, and despite excellent efforts, children don’t always turn out as one hopes or predicts.  But, seriously, no one could have been prepared for this! And yet, I have never seen any parents who loved their kid more than these brave people loved this poor child.

Pediatrics can be a tragic, heartbreaking field to work in, especially at a tertiary care center like UCSF (where I’m currently visiting). Every patient has several big problems. Too many will die shortly. Families have to split time between the hospital and the life they want. Parents put off their education, their careers, their relationships, their other children. They drag on in these horribly straining circumstances for months, years, indefinitely—until their trials end abruptly in the death of the little one. So many times a day I wonder how all these families make it through such times.

The beauty of Pediatrics is getting to be a part of these stories, to see example after example of courage and resilience, and to help bear these huge burdens in some small way. It’s the little head poking around the IV pole, shouting, “Excuse me, Doctor, I can’t see the TV!” It’s the five-year-old grinning when asked about his new diabetes, then running over to bite his brother’s head. It’s the sigh and nod of a tired mother writing down the dosages of yet another new medication regimen. It’s the gorgeous young couple huddling over the crib of their severely-deformed son.

The beauty of Medicine in general is seeing people in the most unimaginably horrific circumstances, and realizing, they are just people. They are not a list of diagnoses. They are not limited in their ability to be happy.

To Fight

Have you ever had a doctor break down and cry with you as you received bad news? Sometimes I have to work really hard not to be that doctor.

Each day in Oncology clinic, I see all the stages of grief. Everyone battles cancer completely differently, and I get to experience it all as one giant roller coaster.

One minute an old woman comes in after her last round of chemo left her hospitalized. She absolutely insists on taking another round. Her doctors hesitate to give her more chemo and radiation than she could tolerate, yet she refuses to go to the grave without having pulled out all the guns. The defiance in her eyes is contagious. I want to shout, “Yeah!! Go get ’em!”

Next thing we see a young man whose cancer had no business interrupting the course of a well-plotted life. He’s already nauseated just worrying over how the treatments will affect his family. He and his wife raise a slew of questions, exploring every crevice of every possibility. Our uncertainty makes them visibly uneasy: Curing cancer is a numbers game, from our perspective. But for each individual patient, we either achieve a cure or we do not—and the side effects are definitely not worth it for a not-cure. I wonder if he might talk himself out of getting any treatment at all.

Then we get a happily oblivious patient, a guy with brain tumors so far gone that he no longer has the capacity to understand his own plight. We try to explain that he needs to take his chemo pills diligently. He smiles pleasantly and agrees, indicating that he clearly won’t do anything of the sort. While this is truly terrifying to me, part of me also thinks that perhaps, for a cancer patient, he is in the best of all worlds.

The tearful patient really gets to me. Someone had given her false hopes about her prognosis, so then it became our job to set the record straight. The doctor apologizes profusely. The patient retreats into heaves and sobs as she begins to mourn her own death all over again. In her mind, we have just killed her. I hand her a box of tissues—inadequate for the gravity of the situation. Yet she smiles briefly as she takes the box from me. We continue the conversation as she empties the box. Pagers ring, and we silence them without answering. Occasionally I stare at the ceiling so the tears won’t crash down.

Where in my medical training was I supposed to learn how to let a patient die? How do I tell the dark news, and then, how do I react? Do I grieve the disease, or do I fight it? What does the patient need to hear? Is it inappropriate to laugh with them? To cry? Is it unprofessional to admit that the cancer, in beating the patient, is also beating the doctors?

What is a good doctor?

How My Book Got Its Name

I wondered for a whole year what I was going to title my book, and suddenly, “The Ugly Docling” came to mind. I think it’s fitting on many levels.

For one, the Ugly Duckling is the story of a nerd kid who grows up to be a doctor (or engineer, or astronaut, or member of any profession that draws from the smart kid pool.)

I’ve been a misfit since elementary school. First it was because I was an immigrant, had an odd name, wore different clothes, and didn’t speak the language. But even after I grew accustomed to American culture, I still struggled with being a nerd. I tried so often to dumb myself down so I could be accepted by other kids. I wanted people to know that I was a musician, a poet, and a tennis player, but I would be mortified if anyone found out that I was in MathCounts or Academic Olympics. And though I spent way too much time trying, I never had nice hair. For me, this one was tough; high school is all about the hair.

Fast forward to medical school: Everybody is a smartypants. Everybody is charismatic. Everybody has nice hair. Well, almost. When we tell people that we are going to be doctors, they react with kind words of admiration, appreciation, and respect. (And then they show us skin lesions for diagnosis.) Yet, when I found my old MathCounts roster and pointed out that a couple of my classmates were on it, they were mortified. It really is bittersweet to look back on those years. But hey, let’s face it: doctors don’t just pop out of thin air; they were Mathletes when they were little! Nobody makes fun of a doctor. So why are American kids taught to make fun of nerds? I consider this book to be a big hug for my young self—and for nerd kids everywhere. Nerd kids: It gets better!

But my personal Ugly Duckling story continued even after I met up with the other swans in medical school.

Perhaps because of our common unspoken background as nerds, the culture in medical school is reversed. We admire and compliment each other for knowing the right answer at the right time. We fear being laughed at when we act ignorant or incompetent. Some may brag about how they never study, but they are either lying or willfully endangering lives and mocking the practice of medicine, and the rest of us know in our hearts that we would never refer our own patients to those individuals.

It was in this culture that I realized I may still be a misfit. Yes, of course I have studied my tail off, and of course I want other students to think of me as being a stellar student. But to the degree that I still have gaps in my knowledge, I question my doctoring skills. When I get an answer wrong, I question if all my classmates are smarter than me, if I can be a good doctor, if other doctors will want to refer their patients to me. For the first couple of years, I focused so much on test scores as measures of my doctoring skills. But then, when the exams were over and I was thrown into the real world of hospitals and clinics, I was humbled to learn so many things that were never taught in the medical classroom. These are the things that I felt moved to write about.