I will post here only occasionally.
Thank you for your readership, comments and support,
Your author is en route to Chicago to attend the annual meeting of the American Society of Clinical Oncology. It’s the first time in years I’ll be there, and I’m looking forward to it – the next phase of my career, a blend of academics and new writing.
So it seems a fitting time to put this blog on hiatus. Not to worry, as always, I’ll pay attention to the conference proceedings. I’ll take extensive notes on cancer science and drugs. And I’ll see some old friends in the Windy City.
You will hear from me again soon!
To all of my readers, and especially those who have commented here or otherwise connected through Medical Lessons over the years, I say thank you. I’ve learned a lot, and not just about medicine.
Lately I’ve been thinking a lot about the value of patients’ voices. As a doctor, I was trained to be somewhat skeptical of what people say, or admit, about their conditions. I was told, though never inclined, to steer the conversation, the history-taking part of the exam, to get the patient’s story in a way that fit succinctly, to answer the questions I was required to ask. The goal of the interview was to form a reasoned opinion about what might be ailing the person, i.e. a diagnosis – and, later, to establish a plan to help make the person feel better.
Journalists, whether they’ll say so or not, tend to do the same. They write an article with a purpose, on assignment or otherwise. And they’ll interview people with the goal of getting pithy quotes to make a point. And they’ll take the words other people and chop ‘em up, and present those to relate a certain narrative. Here too, I’m guilty.
But my point here, today, is about truth, and where the most credible information can be found. Can you trust a selfie?
When I glanced through yesterday’s paper on-line, I read a wrenching account of child abuse. The story, presented in the form of a letter, came through Nick Kristof, a reliable source in my view. I value his columns on environmental and women’s health. When I read the letter he presented, by Dylan Farrow, detailing the humiliating experiences she had as a young child in the home of her adopted mother, Mia Farrow, and the filmmaker Woody Allen, I was stopped by revulsion. Her depiction of an incident had the immediate effect of making me never wish to see another of Allen’s films again. Later on, I read Kristof’s regular NYT column, which includes just a clipped segment of the letter. The picture clouded. He makes a point with which I agree, fully – that girls and women who claim to have been assaulted, or abused, should be taken seriously. But I found myself wondering: how do we know what Dylan says is true?
I’m struck by how two versions of the same story, offered by one journalist, led me along diverging sympathies. One, in which the young woman’s testimony is included fully, left me feeling convinced that the filmmaker, who’s created many of my favorites, shouldn’t receive awards and, in fact, deserves punishment. The other, in which the journalist presents parts of her letter in the context of his admitting a relationship with the family and some legal issues around the case, left me wondering if the celebrity is a victim of finger-pointing or distorted recollections of things that happened to a child a long time ago.
The bottom line is that I certainly can’t know what happened, nor can most readers. Memory of pain, illness, trauma and ordinary experience is subjective.
Getting back to medicine –
Few journalists I know would want a doctor to not listen attentively to their account of their illness, however long. Many doctors claim they’re giving patient-centered care, but are they really listening to their patients’ stories? How do professionals count, or discount, an individual’s rendition of a story, and render a diagnosis or prescription?
My only conclusion is that it’s usually worth hearing what a person says, directly. She is a key witness to her experience. Doctors and journalists may aspire to being more objective, by documenting what happened to a person or group. They draw their own pictures, or graphs, and offer separate explanations of events and phenomena. But they make edits all the time, consciously and otherwise.
All for this week.
For this week, I refer my readers to the generous, telling blog of Lisa Bonchek Adams, a woman who is 44 years old and lives with Stage 4 breast cancer. She has spent the past week holding firm at the center of a media-storm, while hospitalized.
I know Lisa and admire her for her candor. It takes courage to share what it’s like, as she does – good days and bad. Yes, her story is imperfect. But so is everyone’s.
I see beauty in her story, unedited.
Lisa’s blog and tweets are not filtered by a journalist, nor structured by a doctor to fit into an HPI or EHR. She writes directly to her readers. If you insist on literature, you might consider Lisa’s work as a splintered and intensely personal longform narrative.
The blog is kind of like a thick, old-style paper chart of a complex patient. A doctor, in trying to understand a person’s course, might read all of it, or flip through most, or just cut to the chase and scan a few recent lines and lab values. It takes time to pour through a detailed account, to appreciate what is really going on, to understand what the notes reflect.
It could be that there is no “answer,” that Lisa’s story is, plainly, what it is – about her life. Not everything needs be explained. Why peg a person’s condition? Except maybe if you’re a doctor and she’s asking you for treatment or advice.
Lisa is not asking for a diagnosis. She has a team of doctors. She is just letting you know what it’s like to be in her circumstances, in case you’re interested, or care.
I learn a lot from Lisa. I am glad that she is alive and tweeting, as she chooses.
When I was 14 years old, I spent Christmas as a patient in the hospital. While that circumstance might seem sad, it wasn’t my holiday to celebrate. Rather, it was scary, because my usual surgeon was away on vacation, and my care was in the hands of strangers.
Years later, after medical school, I spent more than a dozen Christmases working. Maybe more. Because I am Jewish, it seemed appropriate for me to work on that date. The main drawback, as I matured in my physician-ship, was that my sons were home from school; it was a day I might spend with them. But as holidays go, it was one when I didn’t mind working. I was glad to do it.
So here’s the thing for doctors on call on holidays like today or Thanksgiving, or Easter or Eid, or the Jewish New Year – here’s what I’d say to the young doctors, residents and fellows, if I were still making rounds, covering more patients than usual, and eager to get home:
Please don’t race through rounds. Be a little more generous than usual with your time, thoughts and words. Yes, your family wants you to get home today. But the people for whom you’ve accepted responsibility, to take care of them today, need you too.
Patients who are in the hospital over the holidays aren’t there by choice. They may need extra examination and a bit of hand-holding, besides greater diligence at a time of year when the on-call schedule “turns” more frequently. It’s when some doctors may be loathe to call a cardiology consult for an abnormal cardiogram, or an infectious disease specialist to evaluate fevers…Patients need the doctor who’s there, who may be less supported than usual, with fewer nurses or physician assistants than usual, to notice if they need a change in their meds, or if they’re short of breath, or in pain.
My thoughts are with people who are sick in the hospital today, the patients and their families, and the nurses, doctors and support staff. And everyone else –
Cheers, salud! Merry Christmas to those who celebrate it! And thank you to the doctors and nurses for being there when patients need you.
I wish all my readers a good holiday and healthy 2014,
I don’t often write about scoliosis, a health problem that’s been with me since age 6. The problem is that my spine is twisted, S-shaped, and – without the support of steel rods, titanium cages between lower vertebrae, seven or so bolts and a screw into my hip – I couldn’t walk or stand up much, if at all.
Recently, the New England Journal of Medicine published an article on a rare, NIH-funded study evaluating treatment of this condition in adolescents. It’s an odd, semi-randomized trial: the researchers intended to randomize the patients to wear a back brace for at least 18 hours each day, or not. Not surprisingly, they had trouble enrolling young patients from over 1000 deemed eligible; few were willing to be randomized to wear the brace, or not. In the end, they studied 242 patients. The endpoint was whether the kids who wore braces were less likely to need surgery.
How do you know if a child needs surgery for scoliosis? The authors state that “Curves larger than 50 degrees are associated with a high risk of continued worsening throughout adulthood and thus usually indicate the need for surgery,” based a 1983 report. The date of that limited old paper – and a greater point, I might add – is how little evidence there is for patients with scoliosis and their parents to guide treatment decisions.
The NIH provides some information on scoliosis, although there’s not much on how common is the problem in moderate and severe forms. Significant scoliosis is far more common in girls than in boys. A lot of kids have a slight curvature, if you look hard for it, and many older adults develop curving of their spines. But the frank, debilitating kinds of deformity caused by an S-shaped spine at a young age, which limits the capacity of the heart and lungs, besides other problems, cosmetics aside, if of unknown frequency. And there’s little by way of hard data to distinguish among braces, surgical methods, duration of casting and other issues. I learned today that the USPSTF doesn’t recommend routine screening for this condition.
The NEJM study stopped early, because the results became clear. Wearing the brace significantly reduced the chances of an adolescent spine’s progression to severe curvature, from 72 percent down to 48 percent. So for the next friend of a friend or colleague’s acquaintance who calls me and asks what it was like to wear a Milwaukee brace as a child, and then to have surgery, I might refer them to this article, which supports the “bracing of adolescents” – quite a summary of 4+ years of my life, before the (brief) traction, surgery and casting.
Surgery for scoliosis is a much lesser and safer procedure than it used to be, but it’s nothing to choose if you can avoid it. When I was 14 years old, the orthopedist told us my chances of dying during the procedure were approximately 0.5 percent. I was good enough at math to comprehend it, and by then had been to enough doctors’ offices to know that he was probably making it seem better than it was. Besides, what were the non-fatal and long-term complications of the surgery? I didn’t ask, but I’ve learned: Many –
Jump to yesterday evening, when by chance I got a front-row seat at Bodycast, an autobiographical performance art or “talk,” with bits of dance, music and neat images by Suzanne Bocanegra. The artist, now in her fifties, has scoliosis and wore a cast for two years as an adolescent in Texas. Frances McDormand, one of my favorite actresses, delivered the layered, piercing work. As Bocanegra mentioned, some people fetishize casting and bracing and putting women in traction and stuff like that, which is truly sick.
I liked the show, and I’d be interested to see more of Bocanegra’s work. One of the threads was making order out of curves, art out of irregularities…She’s into tartans, and plaster casts, and art history, and classical notions of beauty. What she represented in Bodycast, as I saw it, was somehow putting different aspects of one’s life in order, and interweaving them, including the flaws.
Life is curved, usually, and maybe it’s better that way. Perhaps that was the Bocanegra’s point, or dot, as she might illustrate it.
And on that note, I’ll lead my readers to my new website: elaineschattner.com. What’s next?
I thank the artist for her work.
Last week my students – who are, necessarily, abstracted here – studied breast cancer. How the course goes is that we meet in a small group and, each week, work through a case by Problem Based Learning. The recent case concerned a woman who, at age 35, noted a small breast lump. Each day we acquired more information about the patient, such as the size and molecular features of her tumor and prognosis. We sorted through her treatment options.
It was a dense subject. Over 4.5 hours we discussed what kind of biopsy she needed – aspirate or core needle? We considered if excision in an operating room is required to establish a breast cancer diagnosis. (rarely) We reviewed breast imaging methods (mammograms, sonograms and MRI) and tumor staging. We covered some pathology techniques including OncotypeDx and Her 2 testing by IHC or FISH. We spoke about risk factors and BRCA testing – how that’s done, what it costs and when it might be indicated. We looked at the molecular biology of Her2 signaling, and how that might be pharmacologically blocked. We considered the nomenclature of LCIS and DCIS, and the concept of overdiagnosis. We talked about the woman’s decisions for surgery (lumpectomy or mastectomy) and sentinel node evaluation. We considered kinds of adjuvant therapy including hormone blockers, chemotherapy combinations, radiation, antibodies including Herceptin, and other treatments she might receive. We spoke about her prognosis and odds of recurrence.
We spent time on the statistical concept of lead-time bias. And more. Medical school isn’t easy.
What I hope for my students, real and in cyberspace, is that they’ll always try to do what’s best for their patients. Sometimes in PBL we use PowerPoint. So here’s a list of three things to keep in mind, on learning – not just about breast cancer, but about all aspects of medicine:
1. Keep studying. Patients want and rely on their doctors to stay up-to-date about medical and scientific knowledge in their field of practice.
2. Keep paying attention, so you’ll hear and recall your patients’ concerns and preferences, and offer care that’s mindful of their goals and values.
3. Keep thinking, constantly – how the data applies to the person, an individual, the real patient you’re trying to help.
Of course you should keep asking good questions, solicit advice from colleagues, be respectful of the people who entrust you with their lives…
The best presentations don’t cover too much ground, so I’ll stop here.
See you in the morning, or next week,
Before I became a journalist, I rarely talked about my medical problems. When I was working at the hospital I tried not to mention, or show, the pain I was experiencing in my back to colleagues or even friends. Eventually I had to tell a higher-up about it, because I didn’t take narcotics and the pain became limiting. Rounding was difficult. I needed a chair.
Long after “coming out” to my friends about my diagnosis, I realize now that what’s most important is telling people about the disease. Telling waiters why I’ve brought a special pillow with me to a restaurant; legislative aides who want to know what their bosses can do; and strangers who ask, almost rhetorically, if I am in pain.
The point of the article, as I understand it, is that big-name diseases like cancer get loads of media attention and sympathy from strangers. Relatively few people “get” the suffering of those with rare or less mortifying conditions. This is especially true when there’s no celebrity who speaks, writes, sings or otherwise whines or rails on it. People who don’t feel well want empathy, or at least a bit of consideration.
OK, now I’m going to say what’s hard, and I might regret, but I’m not sure that everyone needs to hear about all of our ailments: Sure, if you’re a writer, you can sort through your medical issues and feel better by expressing yourself, as I sometimes do here, and in principle and occasional reality help others facing similar disorders. And if you’re an employee somewhere and you need to take time off or accommodation for a disability, you may need to talk with your boss about what’s going on.
But do you need explain to the person on the checkout line or, say, a mother organizing a bake sale, why your back hurts? Why you frequent the women’s room? Or why you need a seat on the bus?
I am truly ambivalent about this.
My only way out is to tell you of an error I think I made, in withholding information. After my spine surgery, when I couldn’t sit up without assistance, or raise my arm to brush my teeth, and then eventually was practicing walking with a cane, wearing a brace in warm weather under modest clothing, I deliberately didn’t visit or walk by my place of work. I didn’t want my colleagues to see me looking frail. I wanted to return to work looking strong and standing straight up, as if nothing were wrong inside.
Already I’d had the cancer treatment – surgery and chemo – and they knew about that, although we didn’t speak of it much. Mainly it was women coworkers who visited me when I was hospitalized. That is understandable. Most of my colleagues didn’t know about my back. Not really. A lot of people have back pain, after all. What’s the difference, scoliosis, fusion, a revision, a clot, whatever…Or about my other conditions. It was TMI.
Over time I was becoming a burden to the group and – astonishingly in retrospect, I felt badly about that. I worked harder than most, to compensate for my disability (which I had trouble acknowledging, internally), and that further damaged my health. I sometimes wonder, now, if I had told my colleagues earlier, and let my non-cancerous conditions “show,” would I still be practicing medicine today?
Not everyone wants to hear about it. Or know. Besides, plenty of people have stuff they don’t mention –
“Everything is copy,” is a phrase Nora Ephron learned from her mother. That’s according to her son, Jacob Bernstein, who detailed some of her final days in the New York Times Magazine. But Ephron kept quite a bit to herself. She was a sharp and successful lady.
I’m thrilled about today’s SCOTUS decision. The Supreme Court upheld the gist of the Affordable Care Act (ACA). Am I surprised? Yes, like pretty much everyone – I didn’t anticipate Chief Justice Roberts’ clever argument about the individual mandate.
What I see in this is first, a win for patients, who now are more likely to get health care if and when they need it – preventive and otherwise. L’Chaim!
Second, it’s a win for the Obama administration and the Democrats. And although I went to journalism school at Columbia University and was told that “real journalists don’t share their opinions,” I do: I’m a registered, reliable, primary-voting Democrat. The ACA is, so far, President Obama’s signature achievement. This SCOTUS decision supports the President’s goal of simultaneously reining in health care costs and expanding coverage to all. It raises the likelihood of President Obama’s re-election. Cheers!
Finally, and at a deeper level, the decision reflects the power of one man’s thoughtfulness to change the outcome of a seemingly bleak situation. (This can happen in oncology and other kinds of medicine, when most of the doctors or specialists on a case throw up their hands or say “it’s impossible because of blah, blah, blah,” and they might refer to some old published studies on old drugs, or something like that.) What Chief Justice Roberts did was think out-of-the box, carefully and within a legal framework. Like a good, smart doctor, morally grounded and, perhaps, influenced by compassion (hard to tell), the Chief Justice figured out a legally acceptable way for his court to do the right thing. By his wisdom, he will have saved more than a few lives. Bravo!
Your author has been busy writing other things, and revamping this site. Medical Lessons is, if nothing else, a work in progress.
For this week, I thought I’d simply share this image of periwinkle, Catharanthus roseus. From this plant comes an old chemotherapy drug, called Vincristine (Oncovin). When I practiced, I used this agent to treat people with lymphoma, some forms of leukemia, Kaposi’s sarcoma and, rarely, patients with life-threatening cases of low platelets from an immune condition called ITP.
All for now,