Tuesday, June 18, 2019

Death And Other Bad News

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.

The first physician, a specialist Naito had known for 10 years, refused to acknowledge the results of the “off-the-scale” blood test that showed unmistakable signs of advanced cancer. “He simply didn’t want to tell me,” Naito said.
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