Before my son was born in 2021, I wrote several articles about my decision to get the COVID-19 vaccine while I was pregnant. (Spoiler: I got the vaccine, and now have gotten boosted twice! And I will get any other boosters that those brilliant scientists make!)
At the time, I agonized over the decision. This was back in December 2020, when the vaccines had just been FDA-approved and health care workers had first access to them. I was frustrated by the lack of data on safety in pregnancy and how hard it is to study pregnant people in general. My worry about the right thing to do truly felt all-consuming, and I wrote about it for the New York Times.
It’s up to me and my nurse midwife, both of us smart clinicians, but not vaccine experts. I asked her what she thought, and she told me, “Honestly, I have no idea.”
I called up a friend who is an ob-gyn who was also pregnant at the time, and she told me she had spoken to a former colleague, Dr. D, whom my friend described as “the smartest ob-gyn I know.” Dr. D is a maternal-fetal-medicine expert, researcher, and a formidable presence on the labor and delivery floor. She knows everything about pregnancy.
My pregnant friend — herself a very smart ob-gyn — begged Dr. D to tell her what to do. Should she get the vaccine or not get the vaccine? Dr. D balked, telling her it was a personal decision, she had to weigh the risks and benefits. My friend eventually asked her: What would you do if you were me?
Dr. D finally revealed her true opinion. “I’d get the vaccine,” she told her. My friend scheduled her appointment the next day, and after I heard her story, I scheduled mine.
I wrote about this agonizing decision-making process for NPR, months after I decided to get vaccinated.
"I wouldn't tell you to do it if you were my patient," one obstetrician told me. "For my patients, it's really a personal choice."
It was easy to look back in April of 2021, when I wrote this piece for NPR, on the uncertainty of December 2020 and forget how stressful it all seemed, how quickly COVID policies changed, how rapidly the experts seemed to change their tune.
But what stuck with me, even now, was that it was just so dang hard to get any doctor or midwife I was seeing to tell me what she really thought! It was only after playing my doctor card, after getting friends and colleagues to give candid advice to me as another doctor, did I get let in on the big secret: everyone thought it was really smart to get the vaccine.
What was going on, that made it so much easier for doctors to share their advice to a friend and colleague, but when I had my patient hat on, my health care providers played their cards so close to the chest?
I got a message on Twitter from a reader of my NPR piece, another primary care doctor, who pointed out something brilliant. It’s only when doctors don’t know what to recommend do they not make their opinions clear.
Quitting smoking is a great example. We know smoking cigarettes is harmful, full stop. No doctor will ever recommend you start smoking or continue. (That’s not the same thing as being judged for it. A good doctor will be respectful about it, will help you understand why you might continue to smoke and why now may not be the right time to quit.) But their advice will be clear: it’s good to quit smoking, or never start in the first place.
When the science is ambiguous, that’s when doctors are told to engage in “shared decision-making.” It’s a buzzword in medicine, one I’ve found confusing and inadequate over my years in practice. And the more I think about how it’s used, the more I have to come to realize it’s a euphemism for “we have no idea.”
If quitting smoking is an unambiguous good thing, testing for lung cancer isn’t. Take CT scans for lung-cancer screening, a test that the US Preventive Services Task Force recommends for people with a significant smoking history. (The USPSTF are the head honchos who decide which tests people should get when they come in for preventive care.) It’s not a slam-dunk test. It has some significant side effects, and the research is not clear that getting the CT scan helps more than it harms.
So, doctors are told they should do shared decision-making with their patients to help them decide if they want to get the CT scan. This is a caveat that other tests, those that have more data to back them up, don’t get. (Pap smears and HPV testing to check for cervical cancer, for example, have no such “shared decision-making” caveat.)
The USPSTF says:
Shared decision-making is important when clinicians and patients discuss screening for lung cancer. The benefit of screening varies with risk because persons at higher risk are more likely to benefit. Screening does not prevent most lung cancer deaths; thus, smoking cessation remains essential. Lung cancer screening has the potential to cause harm, including false-positive results and incidental findings that can lead to subsequent testing and treatment, including the anxiety of living with a lung lesion that may be cancer ... The decision to undertake screening should involve a thorough discussion of the potential benefits, limitations, and harms of screening.
What?
I’m a primary care doctor, I do this all day every day, and these are some serious mixed messages. In fact, I wrote about how terrible doctors are at doing shared decision-making precisely when it comes to lung cancer screening. In the 2018 study I wrote about for NPR, doctors said some pretty unhelpful things.
"Medicare is now paying for uh, CT scans of the chest as a screening tool, so, uh, we can work on scheduling that for you," one doctor told a patient in a conversation that researchers graded as a poor example of shared decision-making.
Thinking about this in the context of my own experience as a patient with “shared decision-making,” I am coming to believe that the term really means that doctors have no idea what to tell their patients.
The doctors and midwives who cared for me during my pregnancy had no idea, in 2020, if the COVID vaccine was a good idea or not. And that’s ok — we didn’t have any data on it. But framing it as a “personal decision” for me to make felt burdensome and stressful. The “shared decision-making” they attempted with me felt clunky and unhelpful.
So maybe the next time I read about “shared decision-making,” I’ll instead substitute a gentle, “I’m not sure. We need more research.”
What do you think? Has a doctor ever successfully guided you through a difficult decision? How do you think about medical tests and treatments when you don’t have much data to guide you?