Part I
I look back at my medical career. I
look back at my life. I look back at my life a lot, or really my
life intrudes itself into me while I'm doing other things, usually
with chagrin. Just as Rousseau said in his Confessions, the older he
got, the more he looked back with chagrin at what he had done, the
negatives grow and the positives shrink, the urge to realism,
perhaps, insisting that too much credit not be claimed. Sigh!
Others think I did a lot of good, my
patients, my colleagues, maybe even my children, and maybe I did.
One thing I keep coming back to, when I wonder if it was all smoke
and mirrors and maybe that I was an imposter, a recipient of positive
transference. I think – there was that one time! It was a little
baby boy, somewhere around four months old, in our Alameda office one
afternoon, just a routine exam. I did my exam the way I should have,
quietly and thoroughly, and for some reason he was very relaxed, and
his abdomen was very soft. I palpated, deeply, the way you should
but as you often can't. I palpated deeply, and I felt something. It
was deep, it was a bit soft, but there was something there, I was
pretty sure. I walked down the hall to get Beverly, the other doctor
in the office with me that afternoon, so she could feel it, too. She
thought she felt it, too. “There's something there,” she said.
I sent him off to pediatric surgery.
The surgeon, Jim, couldn't feel anything, but they took my word and
worked him up, and there it was, a neuroblastoma close to the spine.
They treated it successfully. Jim even sent me a fan letter which I
have kept. How you felt it I do not know, he said, but good work!
The patient's family then moved to the East Coast and, as they say,
was lost to follow up. Neuroblastomas can act funny, but I think the
odds are we did very well by taking it out and probably saved his
life.
So there's that. There is all the
positive feedback, all the appreciative patients, but who knows how
much good I really did? I don't know. You often don't know what
diagnoses you missed, what you could have done better, some things
you do know but you don't think of them but then they intrude
themselves. I do know I was there, and I tried, and I learned to
help, one way or the other. It just took a while.
But now I'm remembering one time in
particular. It was in that same Alameda office, in a very small exam
room we used for hearing tests, but it was a crowded day, so that was
the room I had to use for our brief conference, the mother, the
heavy-set father, and I sitting very close together, the small window
open to the street one story below. The patient was a little boy who
was not developing well and we had worked him up. The results were
devastating. He hardly had any cerebral cortex at all.
The father confronted me directly. He
said, “Doc, give it to us straight, is he going to be like this?
Does he have any kind of a future?” The answer should have been,
“It's devastating. He is lacking the brain to develop.” But I
had heard that patients like to have hope, so I said, “Well,
there's always hope. Miracles do happen.” The father was
frustrated with me, also overwhelmed by the situation, and left with
what I remember as disgust. As well he should have. Truthfully, as
far as I could see, there was no hope. I just thought, medical
science sometimes gets it wrong. But I overdid it. I didn't say
enough. Like my mother, I was terse when I should have been more
expansive, I stretched the truth too much, and I didn't express my
feelings the way I should have, I fluffed it.
No one had ever really taught me what
all doctors need to know how to do, to deliver bad news straight but
with compassion. I hadn't seen it done. I had read that patients
always want to have hope. My own instinct was always to say things
straight, but I didn't know how to do that and still to be kind. I
didn't want to hurt them, and I was putting it together the best way
I could. But it wasn't very good at all.
In med school, no one ever taught me.
In residency, no one ever taught me. Maybe they alluded to things,
or maybe they didn't. I wasn't always a good one for learning from
others, I was always very independent, I wasn't one to imitate, I was
one to find out on my own. Well, here I was finding out on my own
and not helping someone in the process. I still feel the failure.
I remember making rounds in my first
clinical rotation at the Beth Israel Hospital in Boston and a woman
came rather franticly to her hospital room door as we made residents
rounds. She said something to the resident who answered her
politely. She was very yellow, maybe a bit wizened, but very alive
and frantic. No one said very much about it, just that she had
cancer and we moved on. Later that afternoon she was dead. I
couldn't believe it, she had been so alive. No one said anything.
I wonder if in the teaching, they
thought that there was a dichotomy of science vs. feelings, and
feelings were thought to lead one astray, so they weren't taught
about. You were supposed to keep it bottled up. When talking to the
patient, one used a formal kind of kindliness, not real person to
person contact the way you would expect from, maybe, a country
doctor. When they did try to teach about it, it seemed pompous, I
think. But we were taught by academics, not practicing doctors.
There's a real rift there within the house of medicine.
When I had my pediatrics rotation and
came onto the neuro playroom with the chief of neurology at
Children's Boston, there were all these kids with football helmets
running around playing. I found it bizarre and dystopic. Dr. Barlow
just moved on through. I was just shocked. No one said anything.
Nowadays they must do things
differently. Things must be better now. They have hospice care, and
palliative care, where treatment failure is not met with scorn
and defiance but understanding of the inevitable fate of all people.
Things must be different now.
Except maybe not. Here is what I just
read about a doctor dying of pancreatic cancer whom no one would
confront to tell him the truth and discuss with him, leaving him in
consternation.
“A second specialist performed a tumor biopsy, and then discussed the results with a medical student outside the open door of the exam room where Naito waited.
“They walk by one time and I can hear [the doctor] say ‘5 centimeters,’” said Naito. “Then they walk the other way and I can hear him say, ‘Very bad.’”
Part II
I remember coming to med school, not
eager to serve, thinking maybe public health was for me, the pampered
son of a medical family (neurosurgery) who didn't think I'd have a
“job,” but a “career.” Who didn't really think about how to
help people personally, maybe just from on high, somehow, somewhere.
After the first two years I confronted sick people and I was
confused, unsure of myself, humbled to be in a position where I
didn't know much. Intimidated.
Then in internship I had my patient
Paul, a 9 year old from Stanislaus County in the Central Valley with
aplastic anemia who would call out from his private room, “Dr.
Shenkin! Dr. Shenkin!” I would come and do what I could, move him
around, carry him. I still get tears in my eyes as I write this.
Then he died on my weekend off. I came in on Monday and said,
“Where's Paul?”
“He died on Saturday.”
“Why didn't you call me??”
“We didn't want to bother you when
you were off.”
It was hard for me to believe. The boy
I was caring for had died, and they didn't want to interrupt my
weekend? They were treating me with kindness, but also like I had a
job, just a job. I had a sinking feeling then, and I still do.
There was nothing to do, it was
aplastic anemia. Then later that week the heme-onc fellows did their
rounds on our floor and one of the twit fellows took me aside and
said, when you have a case like that you should call us, maybe there
are things we can do. To me, the intern. You fucking asshole, I
thought. But of course, it was an unwieldy system where people
didn't cooperate well, and he must have been frustrated, too.
Then there was Eddie, the little boy
with growth hormone deficiency, into whose very small veins I had to
place iv's repeatedly. I hated having to hurt him, I was as kindly
as I could be, and his parents and he thanked me so much when they
left after the week of tests. They thanked me, but I had hurt him.
Pretty bittersweet.
The other kid from Sonoma who died of
leukemia. Leukemia was pretty hard to beat, back then. We were
kindly and tried hard, and after he died his mother said to me, you
know, we need a pediatrician in Sonoma. I thought, me? I didn't
exactly feel like I was rolling from success to success.
It was a lot to experience, and no one
ever said very much about its effect on us as doctors, and how to
face it with patients, although I guess we learned. But what do you
do when no one should ever have their kid die before they do, but
they do, and truth to tell, before this modern era, it was the rule
rather than the exception. The past saw so much anguish.
All during Paul's aplastic course, I
saw Paul's parents all the time, as we faced it together, me at age
what, 27? Then a few months after he died, I was now on my nursery
rotation, and there they were again, Jim and Pat, having their second
baby with me coincidentally, or synchonictically, on call in the
nursery – ushering one in after I had ushered one out. They had
gotten pregnant accidentally the first time, with Paul, gotten
married, and the marriage had stuck. We knew the new one couldn't
replace the old one, but there it was, God playing tricks again. Jim
gave me a paperback book of Isaac Babel – they were Catholic and I
was Jewish and he said that we had some commonalities. He inscribed
it to me. Of course I still have it, and in fact I went and bought
the collected works of Babel. Somehow it means something to me more
than his great writing and his being killed by Stalin's purges after
writing about the pogroms.
Part III
What I would do if I ran the medical
education zoo would be to take the med students on rounds with
seriously ill patients in year one, weeks one to five, or maybe more.
The number one job of a doctor is to help people, not to be a
reserved scientist, it's to help people. Push that. That's your
job, that's what we do. The great thing about science is that it has
given us the tools to help. Now there really are things we can do
for the aplastic Pauls of the world, and lots more. Science is the
key. But helping is the job.
I would concentrate on bad news. If
there is little technically to be done, the entering med student
lacks life experience and maturity tools, but no one has the
technical tools, so why not start there? How to conceive of bad
news, how to convey bad news, how to withstand bad news, how to
establish solidarity and support with bad news, how to tolerate bad
news. It will be a shock, for sure. But might as well get right to
it. First impressions are lasting ones.
A few weeks into Med I we had some sort
of an all-class meeting and the Dean of Students, Joe Gardella, asked
the class if there were any questions. Tom Gutheil, who went on to
an illustrious career at Harvard Law School as a psychiatrist in the
law, spoke up from the back, “When do we get to see patients?”
Gardella had a sense of irony and
looked up and said, “Patients?” It was a funny answer,
studiously supercilious, the way he said it, implying “we're here
for the science, aren't we?” He was a clever man. I myself
wondered, patients? I was scared of that. What could I possibly do?
I knew bupkis. I thought of my so skilled neurosurgeon father – I
would be such an imposter being with patients. Everything I knew was
academic, I was good at that, but not much about life and almost
nothing about medicine. I wondered what Tom had in mind. Gardella's
thought, hold your horses, young man, first you need to know
something, to be prepared. I guess he and I shared that.
But Tom was right. In those first
month rounds in med school I would take along very experienced and
humanistic doctors, and psychiatrists. And philosophers, if they
were pracical. Learn how to help patients, talk about your own
reactions and feelings, which are not simple. Get started on the
right foot. Honest and compassionate and present and sharing the
common fate, some worse than others.
I think it would have made me a better
doctor if we had done it that way. I would still make mistakes. I'm
not that natural with this stuff, I have to learn, and then I'll
still misstep. But to me, you can start learning that stuff right
away, along with your anatomy, and gradually you will pick up the
tools to help with job number one. Learn it while you are still the
most like a patient you will ever be, a naive Med I. And I'd assign
reading: Bob and Adele Levin's, “I Will Keep You Alive: A
Cardiovascular Romance.”
They probably do that now, see patients
very early in med school. I don't know, I chose not to be an
academic, and as I said, there is a deep and persistent fissure
between academia and practice. I went into practice, mostly because
I needed a job, which turned into a career, and then a calling when I
found out what it was all about. I have to learn for myself,
unfortunately.
I wonder, though, even if they see
patients early, do they learn the right things. It's hard to think
that they do. Are there psychiatrists there? Experienced personal
doctors? Philosophers? A Virgil?
Whatever they're doing, they probably
need to do more. I mean, for God's sake, they're still not telling
this doc he had cancer and was going to die soon. Who wants to tell
someone that? It's convenient to hide. This is probably more
typical or not. Who knows, it's just one story. It's got to be an
individual phenomenon, as well one of training. Some people probably
learn it really well, the docs who understand people and care about
them – see Bob's cardiologist in the book I just noted. She is the
opposite case. But she went to med school in Madrid.
But, whatever. In
the end, caring for patients comes first, so if I ran the zoo, I'd
teach it first.
Budd Shenkin