Back in December, I spent what felt like every moment agonizing over whether or not I should get vaccinated against COVID-19.
I was early in my second trimester of pregnancy, and I'm also a family physician, which meant I was eligible to get my shot as soon as the vaccines were authorized for use in the U.S.
At the time — it feels like a lifetime ago, even though it's only been a few months — we didn't have any direct data on the safety of COVID-19 vaccines in pregnant people, since no one who was pregnant had been enrolled in those first clinical trials. I wasn't sure it was a good idea.
When I saw my nurse midwife for an early prenatal visit in December, she was caring but circumspect, and left the vaccine decision entirely up to me. It was arguably an empowering stance, but it left me frustrated. I wanted more of an answer, I realized, even if it was based on a hunch, not years of rigorous research.
So I next turned to my personal networks — texting all the prenatal providers among my friends and colleagues for their opinions. I also scoured the guidelines of the obstetrics professional societies, and refreshed #MedTwitter over and over.
In the end, I became an early adopter, getting my first dose about 15 weeks into my pregnancy. I was surprised at how relieved I felt afterward, a little tearful as I texted my vaxxie — my vaccine selfie — to family and friends. I feel much safer now caring for patients in my primary care clinic. In retrospect, my choice seems obvious.
Ultimately, I'd decided to get the vaccine because my colleagues gently encouraged me to, sharing their honest opinion along with the data. Those persuasive conversations left me wondering: Is this kind of collaborative decision-making something all of our patients deserve and too often don't get?
Now, as I think back on those tense weeks of indecision, I realize I'd gotten more helpful advice in my role as a colleague than I'd received as a patient.
To be clear, I suspect the more cautious guidance I got as a patient had nothing to do with the fact that my prenatal care provider is a nurse midwife. She's a phenomenal clinician, and most obstetricians I've talked with say they treat their patients the same way she treated me in this case. The difference in the style of advice I got came when I switched hats — seeking help as a friend and colleague, not as a patient.
I learned in medical school that patient autonomy is a primary value in American medicine. We're taught to walk our patients through the landscape of medical research, but allow them to then make up their own minds about treatment. It's considered both old-fashioned and unethical to tell our patients what to do.
"It's really about centering the patients and their families," says bioethicist Faith Fletcher, an assistant professor at Baylor College of Medicine and senior advisor to the Hastings Center, a leading bioethics research institute. "It's important that patients are involved in their care."
Still, in my experience, many health care providers are happy to share their unfiltered opinions when asked by friends or family for medical advice. As I weighed my options in December, several obstetricians I spoke with told me to go ahead and get vaccinated. Then they dropped in some caveats I found curious.
"I wouldn't tell you to do it if you were my patient," one told me. "For my patients, it's really a personal choice."
In the name of patient-centered care, doctors sometimes throw statistics at patients and then desert them to wade through an ocean of confusing data.
Others were enthusiastic in their recommendation privately, but declined my interview request in my capacity as a journalist researching a story. They didn't want to publicly contradict the lukewarm guidelines put forth by the American College of Obstetricians and Gynecologists, which say COVID-19 vaccines "should not be withheld from pregnant individuals."
Since then, the direct evidence that COVID-19 vaccines are safe and effective for people who are pregnant has grown as increasing numbers of people have been vaccinated. A small clinical study published in March found that the antibodies the vaccine triggered in the pregnant adult pass through the placenta — and, after birth, through breast milk — and may offer some protection to the baby, too. Pfizer has also now begun a study of its vaccine in 4,000 pregnant women.
But in December we didn't yet have any of that data. Those colleagues urging me to get vaccinated back then were making reasoned, educated guesses that the benefits of getting vaccinated against this potentially deadly disease outweighed any risks — based mostly on an extrapolation from animal data, experience with other vaccines and theory.
Why didn't they candidly give that same forthright, well-reasoned advice to their patients?
Was it a fear of lawsuits? That's what a lot of skeptical patients assume, that doctors base a lot of their professional decisions on a fear of being sued for malpractice if something goes wrong.
But there were other possibilities, I thought. Maybe these doctors felt comfortable making a calculated guess for a colleague, but not for a patient, because they feel morally less responsible for a colleague's ultimate decision.
Sometimes I give off-the-cuff advice to my own friends and family because I trust they feel comfortable saying no if they disagree with me. And I have no problem telling friends and colleagues that I don't want to follow their medical suggestions. With my own patients I'm more mindful of the power dynamics between us, and I go out of my way to try to not be coercive.
I actually think the reason most doctors are hesitant to tell patients what to do has altruistic roots. Avoiding paternalism is a crucial ethical principle. However, in the last few months, I've come to worry that our attempts to respect autonomy sometimes leaves patients in the lurch.
Because my friends and colleagues took the time to talk through my fears and questions about the vaccines, their pointed advice afterward didn't feel like paternalism. It felt like respect and transparency.
At a time when there wasn't yet much quantitative data to go on, I wanted to hear these experienced clinicians' stories: their opinions, how they had approached similar medical dilemmas. I've begun to wonder if many of my patients, grappling with stressful choices over medical treatment, might feel the same way.
I am glad that throughout the COVID-19 vaccine rollout, pregnant people have been treated like the fully capable adults that we are and have been allowed the option to get vaccinated or not. We are all capable, when given all the information, of making our own choice.
I just think we doctors and other health care providers should take a more comprehensive approach as we provide that information — starting with listening deeply, and acknowledging and understanding our patients' fears and hopes.
Fletcher, the bioethicist I spoke to about my experiences, agreed that supporting patients as they sort through difficult medical decisions is about more than just quoting data.
"It's about a provider's interest in trying to connect with a patient on a personal level," she told me. Part of her research on the experiences of Black women living with HIV explores the ways reproductive health care that's more collaborative and respectful of patients' preferences actually improves their health.
"Human connection — I don't think anyone would reject that, especially populations who are generally disenfranchised, or their opinions are disregarded," Fletcher says. "It helps to dismantle those power dynamics [of] 'doctor knows best.' "
Making that sort of connection doesn't always take a huge effort, she adds. When she speaks with patients for her research, they often say that small gestures from a doctor can go a long way.
Patients in her studies often report they felt happier with their care when "providers tried to engage [patients] in a way that was nonjudgmental, or went above and beyond: offering a patient a ride home, or asking, 'How are your kids?' " she says.
What ultimately made me sign up for a vaccine appointment was a phone conversation with an obstetrician colleague who specializes in high-risk pregnancies. He'd returned my call at the end of a long day, and while he was firm in his recommendation that I get vaccinated, that came only after a conversation. He listened to my concerns, and treated me and my worries with respect. The conversation felt collaborative — somewhere in-between being told what to do and being left to figure it out on my own.
Early the next morning, after that call, I got my first dose of the vaccine.
Why isn't this happening for all of our patients in the exam room, not just for a privileged few who, like me, have friends they can call for off-the-record advice?
With 15-minute visits the norm in many practices, I worry that decision-making in medicine — not just about vaccines, but about many medical issues — has become a pantomime of autonomy. In the name of patient-centered care, doctors sometimes throw statistics at patients and then desert them to wade through an ocean of confusing data. Add to this burden the fact that many patients, especially low-income patients, don't have a strong relationship with a doctor they know and trust — or have a doctor at all.
I fear I sometimes do the same thing to my own patients at the clinic where I work in Camden, N.J. Many remain wary of the COVID-19 vaccines. Their fears range from worries about unpleasant side effects to concerns that in the fight against this brand new virus, they're being made unwilling guinea pigs in a vast, unregulated experiment. "It's a personal choice," some tell me. Or: "It's just too soon."
To me, with my medical training, the data we now have on the safety and efficacy of the COVID-19 vaccines are clear: For nearly everyone, the benefits of vaccination far outweigh the risks.
Still, just as for me last December, the data seem incomplete to many of my patients. They want, as I did, more than numbers. They want data in the form of stories, firsthand accounts from trustworthy people, living proof that the vaccine will help them, reassurance that the overwhelming odds suggest the jab won't end up causing them harm — now or 10 years from now.
My recent experience as a patient has changed the way I now talk to my own patients about the vaccine. Their autonomy is still the guiding principle in the care I provide, but I've realized that helping them understand the science means I need to understand where they're coming from. I ask them about their concerns, and don't dismiss them. "I was skeptical at first, too," I tell them.
I tell them about the safety and effectiveness findings from the clinical trials, but I also share the intimate data of my own story: This is why I, too, was nervous; this is why it was the safest decision for me, my family, and my baby. I sometimes tell them, when they ask, "If you were my dad, I'd want you to get it."
Sometimes they aren't ready to get the shot, and that's OK, of course. I don't push. But sometimes, by being a better listener and then respectfully sharing more of myself, I help a few more people make the decision to get vaccinated. And I think I'm providing better care.
Mara Gordon is a family physician in Camden, N.J., and a contributor to NPR. You can follow her on Twitter: @MaraGordonMD.
Copyright 2021 NPR. To see more, visit https://www.npr.org.