I was super nervous about my mother’s hernia operation. It’s a fairly minor procedure – doesn’t even require an overnight at the hospital – but she’s older and has some health issues that made it higher risk for her. Plus, the surgeon she picked wanted to use the da Vinci robotic system to operate.
I went to the appointment with her and listened as he explained how he would make several tiny incisions in her belly, through which he would then insert and stitch this mesh material over the perforations (there were two) to close them. It would be the robotic hands that reached into her and did the actual stitching, though. His own hands would be at the device’s console, maneuvering the robot like one maneuvers an avatar in a video game. (That’s basically what the daVinci is: two long robotic arms with tiny hands, operated remotely through a computer).
I had just finished reporting a piece on the future of robotic surgery, so I knew quite a bit about the da Vinci. I’d played around with the research-grade version at the University College of London’s medical imaging lab; and I’d interviewed a dozen surgeons who swore by the device. The dexterity it gave them was so much greater, they said, and the incisions they had to make so much smaller, that they couldn’t imagine why anyone would not use it.
But I had also read several critical reviews of da Vinci. I knew that there had been parts recalls and lawsuits resulting from some pretty hairy adverse events. A few people suffered serious burns; one patient got physically slapped by a robotic arm. And at least one death had been linked to the device, though a jury ruled that it was the fault of the surgeon, who lacked adequate training, and not the machine itself.
There was this great long-form piece in Men’s Health about how the company that made the robot was marketing it too aggressively to hospitals, and then not providing enough training to surgeons on the back end; and how the hospitals were also marketing it too aggressively to patients, possibly because the machine was very expensive and you needed to use it a lot to pay for it. But also because everyone was falling in love with the thing, without bothering to look at whether or not it made for better surgeries.
The takeaway from that piece and others like it was pretty clear: Be Afraid.
Which I totally was. I asked my mom’s doc a bunch of questions. How many times had he done this specific operation? What were his outcomes like? And why use the da Vinci instead of doing it the old fashioned way?
He answered me reasonably enough. He liked the robot for the same reasons that all the other surgeons I’d spoken with liked it; the “old fashioned” way would involve bigger cuts, which would increase the risk of infection and make for longer recovery times. He couldn’t tell me anything about adverse events, except to say that he hadn’t had any himself. He was straightforward. And as far as I could tell from some basic reporting, he had a good track record.
I still wasn’t totally comfortable, but there wasn’t much time to mull it over because my mom’s stomach was starting to cause her real pain. She liked this surgeon, and he liked the da Vinci. And so we decided to get on with it.
The results were mixed. The surgery itself was a success – the hernia was repaired and my mother wasn’t killed or maimed in the process. But the operation took twice as long as it should have, and her recovery has also dragged on as a result.
There were these couple of harrowing hours in the surgical waiting room; where the patient support lady kept coming out to say “Sorry, but they’re still in there,” long after they should have been finished. Every time she said that, my stomach climbed further up into my throat, and I silently reviewed the catalogue of horrors I’d stored in the back of my brain. What was that adverse event data really saying? Was the device faulty, and surgeons too cocksure? Or were the mishaps in line with what you’d expect from any new technology? Most importantly, which procedure – robotic or non-robotic – was better for a patient like my mother?
Those questions were unanswered by the articles I’d read; but they were not unanswerable. In fact, reams of studies had been published on the da Vinci. The results of that work were messy, to be sure. Many studies found that surgeries were quicker and recovery times shorter with the machine; but many others found no such benefits, and some even found the opposite – that is, outcomes were worse with the daVinci than they were with traditional laparoscopic surgery. But I think, if you separated the well-done studies from the crummy ones, you’d arrive at something actionable. None of the news or feature articles I’d read had attempted to do that. They’d all flicked at the morass without resolving it for readers.
Which I get. I mean, how as a journalist do you fairly evaluate 4,000-plus studies? How do you distill all those papers down to grains of hard truth? You don’t. You can’t. There isn’t enough time (to do it yourself), or money (to hire impartial outside experts). So instead you stick to what you can say: aggressive marketing on the part of moneyed interests, and mounting anecdotal evidence of bad outcomes. That’s a story worth telling, and it’s one I appreciated very much as a journalist.
But as the daughter of a patient, when it came down to it, I still felt clueless and vulnerable.
I was in mind of those feelings when I signed on at Consumer Reports in March. You probably know them as the periodical to consult when you’re trying to decide which car to buy, or which toaster, or which television. And the organization does have a truly impressive research arm — their own engineers, statisticians, expert doctors, and product testing labs (including one for food safety) — plus a stellar reputation for not being in anyone’s pocket. They buy all the products they test, they don’t allow any companies to use their ratings in advertisements, and they don’t rely on ad revenue themselves to operate.
But they also have a long history of going beyond product reviews to investigate laws, regulatory systems and institutional policies that affect average people in a wide range of areas, including health. And then of taking those investigations and translating them into actionable guidelines for consumers and initiatives for the organization’s advocacy arm, Consumers Union.
For a recent example, see the May cover story, which explains how doctors that have been put on probation are still allowed to practice medicine, without disclosing their probationary status to patients. In addition to alerting consumers to this problem, the report provides a list of steps that they should take when choosing their own doctors, and an explainer on when and how to file complaints against bad actors. Meanwhile, Consumers Union’s Safe Patient Project has been working to call Congress’s attention to the issue, and to have laws changed so that it’s easier for patients to learn about their doctors’ disciplinary histories.
In other words: Don’t just Be Afraid. Be Informed. And then Be Proactive.
This from an HR hand-out:
In February of 1936, a dedicated band of professors, labor leaders, journalists and engineers founded Consumer Union — an organization dedicated to providing information on products and services, educating the public, and as the charter said, helping to maintain decent living standards for ultimate consumers. The bedrock of the new organization was thee scientific testing of products, to sort out the shoddy and the unsafe from the solid and the excellent.
Three months after the organization was formed, CU published the first issue of Consumer Reports magazine (then called Consumer Union Reports).
That issue had 25 black-and-white pages with, of course, no advertising. It rated the products that the fledgling organization could afford to test on a limited budget, like toothbrushes, milk and soap. It also gave readers adivce on health (Does Alka-Seltzer work?) and finance (Are credit unions a good idea?).
From the beginning, Consumer Union and its magazine also helped consumers by informing them of unfair labor practices, social issues and national policies. “All the technical information in the world will not give enough food or enough clothes to the textile worker’s family living on $11 a week,” said an editorial in the first issue. Over the next few years, CU spoke out for effective food and drug regulations, supported a boycott of Axis-country goods, and covered labor issues affecting coal miners, women in textile factories, and other American workers.
There’s a lot more to say here, about the difference between narrative journalism (which will always be my first true love) and advocacy journalism (which ok, I’m giving it a try); about the ways in which data like the kind I mentioned above is used and sometimes misused by reporters. And also about the limits of objective information in helping us decide things as personal as who we should trust to operate on our mothers.
But I expect I’ll be talking about all of those issues for many months to come. So for now, I’ll just close with some cool pics from around my new office:
2 thoughts on “On journalism, medical decisions, and my new job”
i will forever marvel at the intermingling of your intellect and your heart. you leave neither at the door. and that’s what makes your work so powerful. brava, my friend, and Godspeed.
Thanks BAM! I am thinking of you and your family these days. Hope you’re all getting on well and that we’ll see each other soon!