Editor’s Note: This is written by guest author Kathryn Keener of One Moon Doula Services about her prenatal care experiences surrounding the births of her two children.
Have you seen this mug or meme going around?
I get it. We all know that Google and the other search engines can lead us down a rabbit hole about any number of topics. We know that if we’re not careful to check sources, read different perspectives and ultimately consult an actual expert, we risk making a fool of ourselves through misguided decisions. We might even be putting ourselves in danger.
Most of us know what it’s like to be in a typical doctor’s’ offices these days. We feel rushed. We’re not often consulted about courses of action. (i.e. “This is my recommendation. These are the pros and cons. How do you feel about that?”) Sometimes, we even find out after the decision has been made (or treatment has been administered) that we had other choices, but weren’t informed of them. The doctor took it upon his or herself to decide for us, rather than invest the time in engaging us as decision-makers in the process. (We have a right to be a decision-maker in the process, almost always. It’s called informed consent.)
So sometimes, we arm ourselves with information. Most reasonable people do so, recognizing that they are not the expert, but that the expert is not infallible. The expert also might be new to us: new to me, my body, my medical history. I happen to have a wealth of information for the expert on myself. We need each other.
What can be even worse than feeling rushed or not being informed at all is when we’re told something we know is wrong. Maybe we know it based on a combination of intuition, our own research, and our intimate knowledge of our own medical history. But if we’re right, and the doctor is wrong…so much is at risk at and stake. Unnecessary interventions come with their own negative effects: missed diagnoses, the progression of a disease, sometimes pain, sometimes suffering.
And guess what? Time and time again, we, as patients, are right. Many times we are right, and not because doctors are bad or stupid, but because they’re human and make mistakes. Because these human bodies of ours (and the elements they are up against) are so complex. It could be because the doctors are so busy and overbooked, dealing with many issues that don’t allow them to give their full attention to their patients. And, yes, sometimes it’s because some of them are patronizing, with dangerous egos that resist challenge.
While it is tongue-in-cheek, it refers to a very real dynamic: When a patient has information that might influence their treatment or another course of action and needs to reconcile it with what they’re being told by their doctor. This is not meant to start a controversy, only to remind providers that we are decision-makers in our own care.
Here’s my story:
For my second pregnancy, I chose an obstetrician based on his prestige and knowledge (he was the OB to stars like Catherine Zeta-Jones), knowing already that I would be high risk because of cholestasis of pregnancy in my past. When I asked him questions about what the course of action would be if the condition returned, this time, he literally shushed me. “Don’t think about last time,” he told me. He may as well have said, “Don’t worry your pretty little head.” But of course, I persisted. I wanted to make sure (at least) that at the appropriate stage in pregnancy, I would get blood tests during prenatal appointments, which would show if the condition was returning. I provided paperwork of the previous pregnancy and about which blood tests were necessary. (This is not a common condition and many doctors don’t know much about it. He, of course, assured me he did. Later, I found out he disregarded this and ran the wrong blood tests).
When the main symptom, itching, began at around 35 weeks, I called his office. They checked with him and came back to the phone to tell me he said to take an oatmeal bath and he’d see me in a few days for my next appointment. AN OATMEAL BATH!? I wasn’t calling to get relief from the itching. You see, I knew from the last time—and from Google—that this condition can be fatal to the baby, even a fully developed baby ready to be born in just weeks. Stillbirth—death—is a real risk. The recommendation is usually to induce, or possibly start medication to buy time and then induce. At the very least, my doctor should have confirmed or denied my suspicions via a simple blood test, NOT advised me to “take an oatmeal bath and I’ll see you in a few days.” But, you know, he’s the expert. I wouldn’t want to confuse my Google search with his medical degree.
The next time I saw him, a few days later, he didn’t even ask me about the itching. When he was ready to finish our appointment, I had to remind him of my symptoms. I told him it was worse. He told me he wasn’t concerned. He told me I would have a rash (there’s no rash with cholestasis—you can find that on Google) and pain (there was no pain the last time I had it). He didn’t refer me to or even consult with maternal fetal medicine. He didn’t suggest the recommended medication, didn’t suggest I stop work early or move up my delivery date. (Later, TWO other doctors would do all of these things and in quite a hurry.)
Finally, in the middle of the night, I couldn’t take it anymore: I KNEW this was the return of cholestasis. When I called him in the morning and told him my symptoms were exactly like last time, he told me I needed to “put last time out of your head.” That I was “making myself crazy.” I finally decided that he was confusing my medical history as some sort of flair for drama and that I was not in good hands.
People, you know the end to this story. You know I was right. You know I had the condition I thought I had. A second opinion by a different provider had doctors scrambling to get me on the medication, get me scheduled for delivery, get me on monitors, get blood taken and send it in for the ACTUAL thing he was supposed to be testing me for all along…all while I counted my baby’s kicks, wondering if we may have waited too long because of his negligence. Because of his ego. Because of his inability to believe a patient knew something he didn’t.
Good thing I “confused” my Google searches with his medical degree. My son might not be here if I hadn’t.
In conclusion, I’ll say this: I’m sure it’s frustrating to physicians when people come in only partially informed, or ill-informed, or even over informed because of Google. But can we really blame patients for Googling? For taking some responsibility for their own health? For not wanting to make decisions in blind faith? There has probably always been a version of this dynamic—old wives tales, traditional medicine, family member input—that physicians have had to balance with their own training and education in order to help patients feel comfortable with whatever course of action seems best. The mug/meme about Google feels disrespectful to patients, to what we as patients bring to the table, which is knowledge of our own medical history and perhaps knowledge from other sources, some of which may be insightful and some misguided. This mug says, “Sit down and shut up.” And for some of us, whether or not we comply with that could be the difference between life and death.
The Informed Consent Mug is available for purchase in our shop.
Written by guest author Kathryn Keener. After providing private postpartum doula services for three years and in two cities (the NY Metropolitan Area and San Diego, California), Kathryn saw a significant need for a larger agency model to better serve families with newborns. She drew from her 15 years of experience helping to run agencies in her prior mediation career, opened her agency One Moon Doula Services, and carefully selected well-trained and vetted doulas who bring the highest level of service and professionalism to their clients. One Moon Doula’s mission is to learn what each unique family desires for their transition to life with a newborn, and to provide a range of services to promote and protect that experience.
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