This week LWON presents “Off Our Meds,” an examination of some scary issues in medicine. We won’t resort to fear mongering, because we don’t have to. Medicine is scary enough as it is.
The woman came to Scott Haig, an orthopedic surgeon, because she had a lump on her collarbone. Usually these lumps are caused by arthritis or an infection, but this one felt odd. It was rubbery, and didn’t seem tender. Haig wanted to do a biopsy, a surgery that usually requires general anesthesia. But the woman didn’t want to be knocked out. So they struck a bargain: Haig would do the surgery with the woman awake, if she agreed to have an anesthesiologist present in case she needed to be sedated.
The surgery went off without a hitch. Haig took a section from the woman’s lump and sent it to the pathology lab. But before he could close up the incision, he needed to know that the pathologist had what he needed to make a diagnosis. So together they waited. As the minutes ticked by, he tried to make small talk. Finally the intercom crackled to life.
The pathologist began to speak, and so did Haig. He tried to tell Jose to call the phone. But the intercom only allowed one person to talk at a time, and Jose was already delivering bad news. “Jose, shut up,” he thought, or maybe even said. Haig can’t remember the exact words Jose used to describe the woman’s cancer – malignancy or tumor or neoplasm – but the diagnosis was clear to everyone in the room, including the woman on the operating table. Naturally, she panicked.
“She sits bolt upright,” Haig recalls. “She was freaking out.”
The anesthesiologist was quick to act. He injected a milky liquid called propofol into the woman’s IV. You might recognize the name because an overdose of the drug killed Michael Jackson.
Propofol is a powerful sedative commonly used to induce anesthesia, but it can also cause retrograde amnesia, a handy side effect in this case. Haig finished closing the wound. And when the woman awoke, she had no memory of the terrifying intercom call, or her cancer diagnosis. And Haig didn’t remind her. Instead, he told her she would have to wait for the lab results. “You don’t want to give people psychic pain that’s unnecessary,” he says. “She was going to get the bad news sooner or later anyway.”
I first learned about this case a few years ago from a friend who had heard about it at an ethics conference. The story unsettled me, and still does. The case unsettled Haig too. He wrote about the experience for Time back in 2007. “Something more important than a chemical balance in Ellen’s brain had been violated — only a little and, obviously, with benevolent intent. But it hadn’t been as simple as pushing a rewind button. Something there had borne the unmistakable quality of wrong,” he wrote.
But what was wrong, and why? It wasn’t the anesthesiologist’s actions. Haig convinced me that his colleague had no choice but to inject the propofol. The panicked woman had a gaping wound that hadn’t yet been sutured closed, and had she not been sedated she could have done herself real harm.
My profound unease, I think, stems from what happened next. Haig made a conscious decision to withhold information from his patient. He didn’t tell her the results of the biopsy, and he certainly didn’t explain why the anesthesiologist had sedated her.
Haig says he was simply following protocol. The pathologist’s diagnosis was based on a quick examination of a frozen section of tissue. But what looks like cancer in a frozen section can turn out to be something else – an infection, for example. That’s why physicians typically don’t deliver a diagnosis right away. They wait until the pathology lab has had time to examine the permanent sections, slices taken from tissue that has been treated with a preservative and then embedded in wax. These slides offer a clearer picture of the cells, but they also take more time to prepare. “You never talk about a frozen with a patient,” Haig says. “You just shut up until you know what you know. That’s the best idea.”
Haig’s argument makes some sense, but it also makes me uneasy. Forget about the patient for a moment, and the slipup with the intercom. Let’s imagine you were the one on the table. Would you want to know what the pathologist saw in the frozen section? The cancer, if it exists, is within you. Shouldn’t you get to decide whether you want the preliminary results?
I would want to know. Maybe Haig’s patient wouldn’t have. But the question seldom gets asked. Haig, and many other doctors, make the call for their patients, as if they know what’s best, as if they know what patients want.
The phenomenon is nothing new. Physicians have a long history of thinking they’re acting in their patients’ best interest. In his detailed history of dishonesty in the medical profession, Daniel Skokal notes that the American Medical Association’s original Code of Ethics from 1847 “instructs doctors to avoid making ‘gloomy prognostications’ to the patient but recommends informing friends and relatives of the situation. Only if ‘absolutely necessary’ may the doctor share the prognosis with the patient.” That trend continued well into the 1960s.
The medical profession has come a long way since then. Haig never lied to his patient. He never even considered it. “If she asked me, I would have told her,” he says. But there’s still a kind of paternalism in his decision to wait to deliver the diagnosis in order to spare the woman psychic pain — a psychic pain she had already experienced, but then forgot. Maybe Haig’s patient wanted to be protected, but not every patient does.
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Image courtesy of Paul on Flickr
So according to the writer an unsure diagnosis of cancer SHOULD be given to a patient. Just wait for all the lawsuits from the false results from that one. The article clearly explains why a frozen cell diagnosis can be wrong but then goes on to say it should be given to a patient anyway?
The only difference I see between the pre-diagnosis “that pattern might be cancer” and my own “that lump might be cancer” is not accuracy, but the added credibility of perceived expertise. It is no less a guess at that point than my own. Give me the certainty, or relative certainty, of full analysis.
Lou – I think the DECISION of whether the patient receives the preliminary results should be left to the patient. And, sure, give me all the uncertainty and caveats that come with it. I’m a big girl. I understand that medicine is an inexact science. Explain to me that the best results will come from the permanent section, and that even then I may not have a definitive answer. I imagine the uncertainty varies from case to case. The pathologist in Haig’s case didn’t sound like he had much doubt.
Steve – It’s a spectrum, right? Poking and prodding your lump at home will reveal less information than a frozen section, and a frozen section will reveal less information than a permanent one. Maybe the pathologist won’t be able to say anything definitive based on the frozen section. Maybe he will. What I don’t understand is why I can’t know what the pathologist knows when he knows it if that’s what I want. It’s my lump, after all.
I ran into a similar (?) but much less life-threatening situation when I went for an ultrasound of the veins in my calf after the cast was removed from achilles tendon surgery. The ultrasound technician would not give me any commentary at all while she was doing the procedure… and this was definitely not life-threatening. I was not thrilled but I also assumed that, probably for insurance reasons, she had been instructed to not comment on her findings while she was doing the ultrasound. It left me thinking that patients need to have more control over their medical treatment… and don’t get me going on how medical billing is done.
I’m with CW… I prefer to have all the information and use the advice of experts to make my own decisions.
I think there’s a fundamental flaw in calling that a ‘preliminary diagnosis’. There’s no maybe about it – the pathologist can’t make a definitive diagnosis from a frozen section. The only question to be answered at that point was whether or not he had enough tissue. It looked like cancer, which would guide the tests he runs on the permanent slides, but a hunch is still just a hunch.
Surely the underpinning issue here is the patient’s reluctance to undergo a general anaesthetic, and the surgeon’s concurrence with this. We’re not told anything about how this decision was reached – just “But the woman didn’t want to be knocked out. So they struck a bargain…”
Seems to me there is a double whammy of betrayal of the patient here: 1) not giving her information about her own lump and 2) knocking her out after agreeing not to knock her out.
As for the ultrasound technician not revealing what she sees–isn’t that chain of command? The expertise in reading the results of the ultrasound is in the hands eyes and mind of the person whose specialty that is. UNDOUBTEDLY the ultrasound technician can see exactly what that specialist does, but she doesn’t have the clout to reveal that to the patient.
The answer to the question in the particular instance of the lady on the table is that she would have been better off not having been told – she took the news so badly that her reaction endangered her health. Whether hearing it over the intercom was really an issue depends on whether she took the same news better across a desk. Fortunately modern medicine provided a way of “untelling her”.
Emilie – is there such a thing as a “definitive diagnosis”? Or is there always uncertainty? And do you mean the pathologist can’t make a diagnosis because he doesn’t have enough information? Or because he isn’t allowed? Aren’t there cases in which the cancer is evident even in the frozen section?
Tim – Dr. Haig explains how why the patient didn’t want to undergo general anesthetic, and why he agreed to forgo it more fully in his article.
Patty – I’m not so bothered by their decision to knock the patient out. I think they didn’t have a choice, and the woman agreed to have an anesthesiologist there just in case. Do you think the “chain of command” argument applies to the pathologist too?
Peter – “Fortunately modern medicine provided a way of ‘untelling her.'” That sentiment totally creeps me out.
Cassandra
“Peter – “Fortunately modern medicine provided a way of ‘untelling her.’” That sentiment totally creeps me out.”
Does it also creep you out that aspirin “unheadaches” people ? The poor lady was in distress, the anesthetic relieved her distress, what on Earth is creepy about that ?
Peter – it relieved her distress by wiping out her memory. You can’t see the creepiness in that? Memories–both good and bad–are a key part of what makes us “us.” Maybe the erasure of a single distressful memory doesn’t matter so much in the grand scheme of things, but erase all distressful memories and you’d be left with an entirely different person. Very different than “unheadaching” someone, in my opinion. (Love that word!)
Hi Cassandra
I agree that wiping memory wholesale is an ethical minefield, but from the account we have here the only memory that was wiped was the lady’s overhearing the preliminary cancer diagnosis. Going from that to wholesale mnemonic engineering is a bit of a leap don’t you think ?