The Troubling Reason I Obsessively Researched My Pregnancy
At the end of my second trimester of pregnancy, I answered a call from an unknown number.
To be pregnant is to exist on a never-ending receiving line of advice, whether we want it or not.
"I know your due date is approaching," said a stranger at the other end of the line, completely freaking me out. She identified herself as being from Natera, a company that my doctor had used for genetic testing I had consented to months ago.
"Excuse me?" I said.
"Have you considered cord-blood banking?" she said.
"No, I'm not doing that," I said. I had read enough about cord-blood banking, the process of saving stem cell-containing blood from your baby's umbilical cord, to understand that my family was in the vast majority of those that would with extremely high likelihood derive no medical benefit from it. Of course, in the societally sanctioned spending spree that accompanies new parenthood, plenty of companies are happy to charge anyone hundreds if not thousands of dollars plus annual storage fees to collect and manage your cord blood.
"Why not? Have you considered all the bene—"
"I'm not doing it and I don't want to explain my decision," I said before hanging up. I would later learn I neglected to check a miniscule box on my testing consent forms at the doctor to opt out of solicitations. Still, I was angry that I was being telemarketed unnecessary and costly medical services by someone who had been trained to immediately call my judgment into question. I was annoyed that my doctor's office would allow such intrusions at all. When I asked my OB about it at my next visit, she told me there's no way Natera would have gotten my information from them. Apparently even she didn't realize what was on those forms.
The incident with Natera did nothing to heighten my trust of the medical establishment during my pregnancy. I was hardly alone. Almost every mom I knew had expressed a similar sentiment.
"I don't trust doctors," read the text of a loved one when I told her I would probably get an epidural after my doctor recommended getting one because, she said, it can help relax the pelvic muscles during labor. But this friend, a highly educated woman who had had done her research and had two unmedicated births, believed firmly otherwise. "Look it up," she said. Thus commenced more of the furious Googling I found myself doing multiple times a day since deciding I wanted to become pregnant.
To be pregnant is to exist on a never-ending receiving line of advice, whether we want it or not. Information presents to us from Google's never-out-of-reach search bar, friends and family eager to use our pregnancies as an excuse to recall their own, and the doctor's office, where the wisdom of medical professionals neatly comingles with brochures and free samples from myriad companies that would really, really like our business as new moms. Separating the "good" advice from the rest is a Herculean task that many pregnant women manage only with vigorous fact-finding missions of their own.
The medical community in America is poorly equipped to help women navigate the enormous pressures that come with birth and transitioning to motherhood.
Doing my research during pregnancy felt like a defense against the scary unknowns, overabundance of opinions, and disturbing marketing schemes that come with entering parenthood. The medical community in America is poorly equipped to help women navigate the enormous emotional and societal pressures that come with birth and transitioning to motherhood. Too much of what pregnant women experience at the doctor has to do with dated ideas about our care, mandated by tradition or a fear of being sued rather than medical necessity. These practices, like weigh-ins at every appointment or medically unnecessary C-sections (which are estimated to account, horrifically, for almost 50 percent of all C-sections performed in the U.S.), only heighten anxiety.
Meanwhile, things that might alleviate stress – like having thorough discussions about the kinds of interventions we might be asked to accept at the hospital during labor and delivery – are left to outside educators and doulas that insurance plans typically don't cover. The net effect isn't better health outcomes for mom and baby, but rather a normalized sense of distrust many American women feel toward their OBGYNs, and the burden of going to every appointment and the delivery room on the defensive. Instead of being wed to dated medical practices and tangled in America's new motherhood industrial complex, shouldn't our doctors, of all people, be our biggest advocates?
As soon as I found out I was pregnant, I devoured Expecting Better, by Emily Oster, an economist who embarked on her own fact-finding mission during her first pregnancy, predicated on the belief that the advice OBGYNs have been giving pregnant women for decades is out of date and unnecessarily restrictive. The book includes controversial stances, like that having small amounts of alcohol while pregnant is OK. (More recent research has called this view into question.) Oster writes that for the vast majority of pregnant women, it's perfectly fine to lie on your back, do sit-ups, and eat Brie — all things I was relieved to learn I wouldn't have to give up for nine months, despite the traditional advice, which my doctor also gave to me.
Oster recommends hiring a doula, based both on research and personal experience. It's a worthwhile investment for those who can afford it: according to one study, 20.4 percent of laboring women with doulas had C-sections compared with 34.2 percent of women without them. A doula can do many things for a pregnant client, including helping her write a birth plan, massaging her back in labor, and cheering her on, which is especially useful for women who plan to labor without pain medication. Use of doulas is on the rise; according to DONA International, the world's largest and oldest doula association, the number of doulas who have been certified to date is over 12,000, up from 2,000 in 2002.
But the most significant role a doula plays is that of patient advocate in the hospital. This is a profound commentary on the way the medical establishment handles childbirth, a medical event that 86 percent of women aged 40 to 44 had gone through as of 2016. Recognizing the maternal mortality crisis in the U.S., where women are far more likely to die as a result of childbirth than anywhere else in the developed world and black women are three times more likely to die in childbirth than white women, a few states now allow Medicaid to cover doulas. Can you imagine feeling the need to hire an independent non-medical care provider to help you run interference with your doctors and nurses for something like an appendectomy?
I wouldn't have been aware of all the imminent interventions during my labor if my doula hadn't told me about them. Things happen fast in the hospital and doctors and nurses may rush patients to consent before proceeding with things like breaking their water or hooking them up to an IV of Pitocin. Only because my husband and I had spent six hours in birth class — a suggestion by my doula — did I realize that I was empowered to say "no" to such procedures.
Expecting more trustworthy advice to come from my doctor than books or Google or even a doula hardly seems unreasonable.
Of course, we all feel immense pressure to become good parents, and questioning conventional medical wisdom is a natural response to that pressure. "Looking around at the world and saying, who am I as a parent? What is important to me? Who are the wise people? What do I think wisdom is? What is a good decision? If you're a certain type of introspective person, if you're really asking those questions, that's going to include like taking a second look at things that doctors, for example, say," says Koyuki Smith, a doula and birth educator.
Expecting more trustworthy advice to come from my doctor than books or Google or even a doula hardly seems unreasonable. Yet my doctor's office seemed more concerned with checking off a list of boxes rather than providing me with personalized care that might have relieved my understandable anxiety about my first birth. When I still hadn't gone into labor around the time of my due date, my doctor encouraged me to be induced because my baby appeared to be large. I declined but scheduled an induction to "hold my spot" around the 42-week mark.
When I asked what medication would be used for an induction if I had one and she said Cytotec, I told her I had read that drug could cause serious complications, but she dismissed my concerns after I told her they stemmed from a book I read on natural childbirth. The FDA's page on Cytotec isn't exactly reassuring.
The nurse who took me in triage after I went into labor a week past my due date practically scolded me for waiting to go into labor naturally instead of opting for induction sooner. My doula told her while I was struggling to speak through labor pains to get off my case about it. I hadn't even become a mom and I was already doing so many things "wrong." Because I had done my own reading, I felt confident that my choices weren't harming my baby or me.
Becoming a mom would be less daunting if the medical community found a way to help women navigate the pressures of motherhood instead of adding to them. "Our culture at large doesn't support women enough in the complicated emotions that are a part of this process," said Alexandra Saks, a reproductive psychologist and author of What No One Tells You: A Guide to Your Emotions From Pregnancy to Motherhood. "I hope that every practitioner that works with women around reproductive health prioritizes her emotions around her experience."
For many of us, that will mean doctors who help us understand the pros and cons of conventional advice, don't use their offices as marketing channels, and don't pressure women into medically unnecessary inductions. Moms should also receive more attention after delivery both in the hospital and after they get home; a single, quick postpartum visit at six weeks is not an adequate way to care for women recovering from the trauma of childbirth, nor is it an adequate way to ensure women are emotionally supported during the transition. While several people interrogated me about my mental health at the hospital and my doctor's office just before and after birth, if I had been concerned about postpartum depression, I can't imagine feeling comfortable enough in those moments to tell strangers filling out obligatory worksheets.
It also means figuring out how to talk to patients who are prone to Googling their pregnancies with gusto every single day. It would be impossible for many women to shun independent research during pregnancy altogether. But it would also be nice if our doctors didn't add to our impulse to do it.
Tapping into the Power of the Placebo Effect
When Wayne Jonas was in medical school 40 years ago, doctors would write out a prescription for placebos, spelling it out backwards in capital letters, O-B-E-C-A-L-P. The pharmacist would fill the prescription with a sugar pill, recalls Jonas, now director of integrative health programs at the Samueli Foundation. It fulfilled the patient's desire for the doctor to do something when perhaps no drug could help, and the sugar pills did no harm.
Today, that deception is seen as unethical. But time and time again, studies have shown that placebos can have real benefits. Now, researchers are trying to untangle the mysteries of placebo effect in an effort to better treat patients.
The use of placebos took off in the post-WWII period, when randomized controlled clinical trials became the gold standard for medical research. One group in a study would be treated with a placebo, a supposedly inert pill or procedure that would not affect normal healing and recovery, while another group in the study would receive an "active" component, most commonly a pill under investigation. Presumably, the group receiving the active treatment would have a better response and the difference from the placebo group would represent the efficacy of the drug being tested. That was the basis for drug approval by the U.S. Food and Drug Administration.
"Placebo responses were marginalized," says Ted Kaptchuk, director of the Program in Placebo Studies & Therapeutic Encounters at Harvard Medical School. "Doctors were taught they have to overcome it when they were thinking about using an effective drug."
But that began to change around the turn of the 21st century. The National Institutes of Health held a series of meetings to set a research agenda and fund studies to answer some basic questions, led by Jonas who was in charge of the office of alternative medicine at the time. "People spontaneously get better all the time," says Kaptchuk. The crucial question was, is the placebo effect real? Is it more than just spontaneous healing?
Brain mechanisms
A turning point came in 2001 in a paper in Science that showed physical evidence of the placebo effect. It used positron emission tomography (PET) scans to measure release patterns of dopamine — a chemical messenger involved in how we feel pleasure — in the brains of patients with Parkinson's disease. Surprisingly, the placebo activated the same patterns that were activated by Parkinson's drugs, such as levodopa. It proved the placebo effect was real; now the search was on to better understand and control it.
A key part of the effect can be the beliefs, expectations, context, and "rituals" of the encounter between doctor and patient. Belief by the doctor and patient that the treatment would work, and the formalized practices of administering the treatment can all contribute to a positive outcome.
Conditioning can be another important component in generating a response, as Pavlov demonstrated more than a century ago in his experiments with dogs. They were trained with a bell prior to feeding such that they would begin to salivate in anticipation at the sound of a bell even with no food present.
Translating that to humans, studies with pain medications and sleeping aids showed that patients who had a positive response with a certain dose of those medications could have the same response if the doses was reduced and a dummy pill substituted, even to the point where there was no longer any active ingredient.
Researchers think placebo treatments can work particularly well in helping people deal with pain and psychological disorders.
Those types of studies troubled Kaptchuk because they often relied on deception; patients weren't told they were receiving a placebo, or at best there was a possibility that they might be randomized to receive a placebo. He believed the placebo effect could work even if patients were told upfront that they were going to receive a placebo. More than a dozen so call "open-label placebo" studies across numerous medical conditions, by Kaptchuk and others, have shown that you don't have to lie to patients for a placebo to work.
Jonas likes to tell the story of a patient who used methotrexate, a potent immunosuppressant, to control her rheumatoid arthritis. She was planning a long trip and didn't want to be bothered with the injections and monitoring required in using the drug, So she began to drink a powerful herbal extract of anise, a licorice flavor that she hated, prior to each injection. She reduced the amount of methotrexate over a period of months and finally stopped, but continued to drink the anise. That process had conditioned her body "to alter her immune function and her autoimmunity" as if she were taking the drug, much like Pavlov's dogs had been trained. She has not taken methotrexate for more than a year.
An intriguing paper published in May 2021 found that mild, non-invasive electric stimulation to the brain could not only boost the placebo effect on pain but also reduce the "nocebo" effect — when patients report a negative effect to a sham treatment. While the work is very preliminary, it may open the door to directly manipulating these responses.
Researchers think placebo treatments can work particularly well in helping people deal with pain and psychological disorders, areas where drugs often are of little help. Still, placebos aren't a cure and only a portion of patients experience a placebo effect.
Nocebo
If medicine were a soap opera, the nocebo would be the evil twin of the placebo. It's what happens when patients have adverse side effects because of the expectation that they will. It's commonly seem when patients claims to experience pain or gastric distress that can occur with a drug even when they've received a placebo. The side effects were either imagined or caused by something else.
"Up to 97% of reported pharmaceutical side effects are not caused by the drug itself but rather by nocebo effects and symptom misattribution," according to one 2019 paper.
One way to reduce a nocebo response is to simply not tell patients that specific side effects might occur. An example is a liver biopsy, in which a large-gauge needle is used to extract a tissue sample for examination. Those told ahead of time that they might experience some pain were more likely to report pain and greater pain than those who weren't offered this information.
Interestingly, a nocebo response plays out in the hippocampus, a part of the brain that is never activated in a placebo response. "I think what we are dealing with with nocebo is anxiety," says Kaptchuk, but he acknowledges that others disagree.
Distraction may be another way to minimize the nocebo effect. Pediatricians are using virtual reality (VR) to engage children and distract them during routine procedures such as blood draws and changing wound dressings, and burn patients of all ages have found relief with specially created VRs.
Treatment response
Jonas argues that what we commonly call the placebo effect is misnamed and leading us astray. "The fact is people heal and that inherent healing capacity is both powerful and influenced by mental, social, and contextual factors that are embedded in every medical encounter since the idea of treatment began," he wrote in a 2019 article in the journal Frontiers in Psychiatry. "Our understanding of healing and ability to enhance it will be accelerated if we stop using the term 'placebo response' and call it what it is—the meaning response, and its special application in medicine called the healing response."
He cites evidence that "only 15% to 20% of the healing of an individual or a population comes from health care. The rest—nearly 80%—comes from other factors rarely addressed in the health care system: behavioral and lifestyle choices that people make in their daily life."
To better align treatments and maximize their effectiveness, Jonas has created HOPE (Healing Oriented Practices & Environments) Note, "a patient-guided process designed to identify the patient's values and goals in their life and for healing." Essentially, it seeks to make clear to both doctor and patient what the patient's goals are in seeking treatment. In an extreme example of terminal cancer, some patients may choose to extend life despite the often brutal treatments, while others might prefer to optimize quality of life in the remaining time that they have. It builds on practices already taught in medical schools. Jonas believes doctors and patients can use tools like these to maximize the treatment response and achieve better outcomes.
Much of the medical profession has been resistant to these approaches. Part of that is simply tradition and limited data on their effectiveness, but another very real factor is the billing process for how they are reimbursed. Jonas says a new medical billing code added this year gives doctors another way to be compensated for the extra time and effort that a more holistic approach to medicine may initially require. Other moves away from fee-for-service payments to bundling and payment for outcomes, and the integrated care provided by the Veterans Affairs, Kaiser Permanente and other groups offer longer term hope for the future of approaches that might enhance the healing response.
This article was first published by Leaps.org on July 7, 2021.
New tech helps people of all ages stay social
In March, Sonja Bauman, 39, used an online platform called Papa, which offers “family on demand,” to meet Mariela Florez, an 83-year-old retiree. Despite living with her adult children, Florez was bored and lonely when they left for work, and her recoveries from a stroke and broken hip were going slowly. That's when Bauman began visiting twice per week. They take walks, strengthening Florez’s hip, and play games like Connect Four for mental stimulation. “It’s very important for me so I don’t feel lonely all day long,” said Florez. Her memories, blurred by the stroke, are gradually returning.
Papa is one of a growing number of tech approaches that are bringing together people of all ages. In addition to platforms like Papa that connect people in real life, other startups use virtual reality and video, with some of them focusing especially on deepening social connections between the generations — relationships that support the health of older and younger people alike. “I enjoy seeing Mariela as much as she enjoys seeing me,” Bauman said.
Connecting in real life
Telehealth expert Andrew Parker founded Papa in 2017 to improve the health outcomes of older adults and families. Seniors can meet people — some their grandkids’ age — for healthy activities, while working parents find retirees to watch their children. These “Papa Pals” are provided as a benefit through Medicare, Medicaid and some employer health plans.
In 2020, Papa connected Bauman, the 39-year-old Floridian, with another woman in her mid-70s who lives alone and has very limited mobility. Bauman began driving her to doctor’s appointments and helping her with chores around the house. “When I’m not there, she doesn’t leave her apartment,” said Bauman. The two have gone to the gym together, and they walk slowly through the neighborhood, chatting so it feels less like exercise.
Parker was driven to start Papa by the problem of social isolation among seniors, exacerbated by the pandemic, but he believes users of all ages can benefit. “Many of our Pals feel more comfortable opening up with older members than their same-aged friends,” he said.
Other platforms aim for similar, in-person connections. Generation Tech unites teens with seniors for technology training. And Mon Ami, which provides case management software for aging and disability service providers, has an app that connects isolated older people with college-age volunteers.
Making new connections through video
Several new sites match you with strangers for real-time video chatting on various topics, such as finding common ground on political issues. Other video platforms focus on intergenerational connections.
S. Jay Olshansky, a gerontology professor at the University of Illinois-Chicago, recalls the first time he saw Hyunseung Lee, an 11-year-old from Seoul, through his computer screen. The kid was shy, but Olshansky, 67, encouraged him to ask questions. “Turns out, he was thirsting for this kind of interaction.”
They’d connected through Eldera, a platform that pairs mentors age 60 and up with mentees, using an algorithm, for video conversations. “The time and wisdom of older adults is the most important natural resource we can give future generations,” said Dana Griffin, Eldera's CEO. “Connecting through a screen is the opposite of social media.”
In weekly meetings, Olshansky noticed Lee’s unique interest in math. “There’s something special in you,” Olshansky told him. “How do we bring it to the surface?” He suggested Lee write a book on his favorite subject, and the preteen ran with it, cranking out 70 pages in two weeks. Lee has published his love letter to theorems on Amazon.
Hyunseung Lee, age 11, of Korea, and U.S. college professor Jay Olshanksy, 67, discuss math, strategy and Hyunsung's budding career as a book author during their video chats through a platform called Eldera. (Photo by Dana Palmer/Eldera)
Lee’s parents told Olshansky that their son has become more assertive — a recurring theme, Griffin said. “Confidence is the number one thing parents tell us about.” Since Eldera’s inception last year, the number of mentors has grown exponentially. Even so, Griffin said the waitlist for mentors typically numbers 200 kids.
Another site, Big and Mini, hosts video interactions between seniors and young adults; about 10,000 active users have joined since 2019, said co-founder Aditi Merchant.
Users often bring the benefits of their video interactions to their real-world relationships. Olshansky views Lee as an older version of his grandkids. “Eldera teaches me how to interact with them.” Lee, high on confidence, began instructing his classmates in math. Griffin noted that a group of Eldera mentors in Memphis, who met initially on Eldera, now take walks together in-person to trade ideas for helping each other’s Eldera kids solve problems in their schools and communities.
“We’ve evolved into a community for older adults who want to give back to the world,” said Griffin. Other new tools for connection take the form of virtual reality apps.
Connecting in virtual reality
During pandemic isolation, record numbers of people bought devices for virtual and augmented reality. Such gadgets can convince you that you’re hanging out with friends, even if they’re in another hemisphere. Lifelike simulations from miles away could be especially useful for meaningful interactions between people of different generations, since they’re often geographically segregated.
VR’s benefits require further study, but users report less social isolation and depression, according to MIT research. The immersive, 3-D experience is more compelling than FaceTime or Zoom. “It’s like the difference between a phone call and video call,” said Rick Robinson, Vice President of AARP’s Innovation Labs.
“When VR is designed right, the medium disappears,” said Jeremy Bailenson of Stanford.
Dana Pierce, a 56-year-old government employee in Indiana, got Meta's VR headset in May, 2021, thinking she’d enjoy it more than a new laptop. After many virtual group tours of exotic destinations, she has no regrets. Her adventures occur on Alcove, an app made by Robinson’s Innovation Labs. He co-created it with VR-company Rendever and sought input from people over age 50 to tailor it to their interests. “I’m an introvert,” said Pierce. “I’ve been more socially active since getting my headset than I am in real life.”
Tagging along with her to places like Paris are avatars representing real people around the world. She’s gotten to know VR users in their 70s, 80s and 90s, as well as younger people and some her own age. One is a new friend she plays chess with in relaxing nature settings. Another is her oldest son. He lives 90 minutes away but, earlier this year, Pierce welcomed him and his girlfriend to her virtual house on Alcove. They chatted in the living room decorated with family photos uploaded by Pierce. Then they took out a boat to go VR fishing — because why not — until 2 a.m.
“When VR is designed right, the medium disappears,” said Jeremy Bailenson, a communications professor who directs Stanford’s Virtual Human Interaction Lab. He’s teaching a class of 175 students entirely in VR. After months of covid isolation, the first time the class met, “there was a big catharsis. It really feels like you’re in a big crowd.” Like-minded people meet in VR for events such as comedy shows and creative writing meetups, while the Swedish pop group ABBA has performed this year as digital versions of themselves (“ABBA-tars”) during a virtual concert tour.
Karen Fingerman, a psychologist and director of the Texas Aging and Longevity Center at the University of Texas-Austin, supports the idea of VR for social connection, though she added that some people need it more than others. Hospitals and assisted-living facilities are using products such as Penumbra’s REAL I-Series and MyndVR to bring VR excursions to isolated patients and seniors. “If you’re in a bed or facility, this gives you something to talk about,” said Gita Barry, Penumbra’s executive vice president.
Pierce uses it on most days. She may see another adult son, who lives with her, less often as a result. But VR helps her manage real-world stressors, more than escaping them. After a long workday, she visits her back porch on Alcove, which overlooks a pond. “It’s my little retreat,” she said. “VR improves my mood. It’s added a lot to my life.”
Some seniors are using more than one technology. Olshansky and Lee discuss strategy while playing Internet chess. And Olshansky recently began using VR. He sees his sister, who lives far away, in a virtual beach house. “It’d be a great way to interact with Hyunseung,” he said. “I should get him a headset.”
A version of this article first appeared in The Washington Post on December 3, 2021.