Friday, January 12, 2018

Lying naked on the bed

A few weeks ago, my husband went in to have a vasectomy.  I am proud of him-- for being brave (only about 10% of US men get vasectomies); for announcing his reason for missing work to his all-male engineering team (imagine the uncomfortable squirms when he brought up the topic at their weekly debrief); and for taking ultimate responsibility for our family's family planning.

Image result for all juice no seedAnd so ends a two-decades long birth control chapter in this woman's life. Woohoo!

In his defense, he did way less milking of the situation than I had anticipated. I had envisioned him reclining dramatically on the couch with an ice pack on his crotch avoiding normal household duties and requesting room service and an endless supply of cereal and Game of Thrones episodes.  Instead, he came home with a smile on his face, exclaimed, "It wasn't really much more pain than a shot of Novocaine at the dentist", and went about helping out with the day-to-day madness that is having three young children. For the next few days, he took it a little easy, occasionally winced in discomfort, and his only recurring complaint was the itchiness.

All in all, it was a success. And a relief-- for both of us.

All said, I cannot help but ruminate on the one remark he made that I find particularly fascinating and somehow shocking: the totally new and "strange feeling of lying naked in the room waiting for the procedure to begin." He repeated a few times, "I've never been in that position. . . just lying there naked."

Lying naked on the bed.
Waiting for a procedure to begin.
Lying naked on the bed.
Wondering.
Lying naked on the bed.
Scared.
Lying naked on the bed.
Vulnerable.
Lying naked on the bed.
Cold.

How long have I been lying naked on a bed waiting for someone to come in?
Cold.
Vulnerable.
Scared.

Twenty-two years.

Since age 18, upon deciding I was going to have sex for the first time, and I dutifully made an appointment for my very first pack of birth control pills and my very my first pap smear. We don't do this, by the way, anymore. We don't pap 18-year-olds. Pap smears in the US start now at age 21, and in some countries in Europe cervical cancer screening doesn't start until age 30. We also don't tie birth control to the requirement you get a pap smear. Turns out that was a dumb idea. In fact, the only thing that birth control and pap smears have in common is that they kind of sort of both involve your private parts.

Again a year later, when I had another pap.

And again, when I had my first vaginal infection.

And again at age 21, when the Peace Corps required I have a rectal exam in addition to a bimanual  exam to be "cleared for service" (WTF?!?). The bimanual exam-- by the way-- is the "two hand" exam-- you know the one-- one hand inside your vagina, one hand outside on your belly, the one that doesn't feel very good and yet somehow seems important. It turns out that physicians don't really know what they are looking for when they do a screening bimanual exam-- our ability to detect cancers or other badness with our two hands is about the same as flipping a coin. In one study of women with known ovarian tumors, physicians were only able to "find" the tumor by examining with their hands 50% of the time. So this type of exam should only be done with forethought-- when your provider suspects you may have a uterine infection or some lesion that could be helped by examining you. 

And again, when I finished my Peace Corps service.
And again, and again and again.
When I got pregnant. And delivered. And got pregnant. And miscarried. And couldn't get pregnant. And had a test. And then another. And then another.
When I had surgery. And then intrauterine insemination. And then IVF.
When I got pregnant again. And delivered.
When the doctor yelled at me for not being undressed and "ready for him" at my postpartum visit with my fussy 6 week old baby who didn't want to be put down.

And again when I was pregnant with my third child and went in for my intake appointment. I was asked to undress completely, as the physician needed to examine my breasts and do a bimanual exam. The funny thing is-- I let her do it-- despite the fact that I know better. That there was no particular reason she should do such an exam at all. Her time (and mine) would have been better spent probing the safety of my relationship, my fears about my advanced maternal age, or heck, just getting to know me.

And yet, there I was, lying naked on the table.

This post is for you, women. For all of you who have laid naked on the table, wrapped in a generic cloth gown that gapes open no matter how you tie it-- or worse, a paper gown that literally rips into shreds as you attempt to preserve your modesty. And then wait for 3 or 5 or 25 minutes for that fateful knock on the door.  To have your very most private parts examined.

Being naked is scary. It's vulnerable. It's raw.  And, unfortunately, it's part of being a woman-- a woman who has sex, a woman whose parts are tucked up inside of her, a woman whose body is both capable and vulnerable-- to being pregnant, to contract disease, to have all the crazy shit that can happen to our amazing parts (everything from vaginal discharge to pelvic discomfort to herpes to a saggy post menopausal bladder).

This is also a post for you, doctors. The scariest part of being a doctor is being vulnerable to forgetting-- forgetting that every single body we have the privilege to see and touch and examine is that one person's only body. It is their most precious and private part. And they are entrusting me and you to acknowledge the power, recognize the specialness, and do what we need to do to care for them with utmost love and respect.

This is also a post for you, men, who may have less opportunity to lie naked on a table at the doctor's office. But your time, too, will come. You will get a hernia or a weird lump in your testicle, or maybe you will be one of the 10% of US men to sign yourself up for a vasectomy.  (It's not so bad, after all). In the meantime, please do us all a favor, and treat every body you come across (particularly those who are lying naked in front of you) with love and respect.

And some day, when you are scared or sick-- may your body be treated the same.

Friday, March 11, 2016

Doctor dinner party talk: vaginal birth or cesarean section?

Last year, on a Wednesday evening in December, one midwife, nineteen doctors, and my software engineer husband assembled in our living room. Well, to be truthful, there were twenty people in the living room and one on Skype.

I had invited them into my home to help me make an important medical decision.

We ate homemade soup and salad, drank a little wine, and took a quick anonymous straw poll: cesarean section or vaginal birth?
 

I was 30 weeks pregnant with a very desired second child-- a pregnancy that I had spent the prior three years working painstakingly to achieve. I had been through one miscarriage, taken fertility medications, undergone several rounds of intrauterine insemination, had laparoscopic uterine surgery to remove a large fibroid, and ultimately went through IVF (thank goodness, it worked!).

Now I was preparing to birth this miracle baby, and I wanted some medical advice. Should I consent to a cesarean section, as was being advised, or should I attempt a vaginal birth?

To be clear, none of my doctors were actually offering me an option. When I signed the consent for my uterine surgery one year prior, I had agreed to the advice that any future pregnancies should be delivered via cesarean section. The fertility doctor told me this, the surgeon told me this, and the governing bodies of medicine (in this case, the American College of Obstetricians and Gynecologists) told me this.

At the time of the fibroid surgery, I was so desperate to be pregnant again that this concession did not matter. But now facing the possibility of yet another abdominal surgery was disconcerting, to say the least. After all, my delivery experience with my first son was uncomplicated and fast-- I was in labor just over six hours, was lucky enough to birth him minutes after reaching the hospital, and was home less than 24 hours later. I recovered well, and I trusted that this birth could be similar.

But what if it wasn't? I did have a big scar on my uterus that hadn't been there last time, and my doctors were unanimous in advising surgery as the only option.

The laparoscopic surgeon quoted a 10% risk of uterine rupture-- that is of 100 women with my type of uterine scar, 10 would rupture-- and this could be serious, very serious. This rate of rupture is about 10 times the rate quoted to women considering a trial of labor after a prior cesarean section.

At my first OB visit, my new doctor quoted the same statistics and reiterated the same recommendation,again pointing to the official word of ACOG, which very clearly advises against vaginal birth in this circumstance.

A uterine rupture could mean emergent surgery, massive blood-loss, hysterectomy, a damaged baby, or even death-- for the baby, for me, or for both of us. Why would I risk such things? Was I totally out of my mind? A cesarean section is not that bad; women have them all the time, most recover well, and (duh) this was a super desired baby. Why couldn't I just accept the recommendation and schedule a c-section?

The answer is not a simple one, as personal risk assessment never is.

                                                                      ****
When something medical is happening to me or to someone I love, I find myself repeating a little mantra. It's simple, distracting, and almost always true. It goes something like this:  

This will make me a better doctor. 

This is my mantra for the big things: When my mom was diagnosed with breast cancer. When she had a hip replacement. When my 18-month-old was struggling to breathe in the middle of the night. When I faced three years of secondary infertility. When my father-in-law lost his leg to a flesh-eating bacteria. When my husband found a lump in his breast.

This will make me a better doctor.

It even works for the small things: When my hair fell out postpartum. When my infant got a rash the first time I gave him peanut butter. When my son's belly button looked really wrong after he pushed his poop out too hard. When I have intractable insomnia at 3:30am. When I do three jumping jacks and wet my pants. 

This will make me a better doctor.

It's amazingly reassuring. Powerful in fact. When I frame real life in the context of clinical experience, I feel better about myself, more in control, more doctorly.

Plus, I like to think it's true-- after all, my patients ask on a regular basis two pretty reasonable questions, “Have you had to deal with this before? And “What would you do in this situation?”

                                                                    ***
The days leading up to my dinner party were pretty exciting for my internal geek. I had sent out a study guide, a stack of journal articles, my actual operative report, an email from my doctor with her recommendation, and a summary table that I had created. My similarly geeky colleagues rose to the occasion. Several medical friends from out of town sent me long emails with annotated opinions and additional references. That morning, I received two calls with clarifying questions:  Exactly how long ago was your surgery? What risk did the surgeon quote you? And a few texts during my workday: What is your BMI? How far along were you when you went into labor with your first?

I am so blessed-- if only every one of my patients making medical decisions had a cadre of 20 trusted colleague to consult-- and not mere colleagues, but brilliant forward-thinking people who also love me and want what is best for me.

I am also cursed-- cursed by knowing too much, knowing that medicine is fallible and that medical recommendations often come from consensus or precedent rather than evidence or patients' best interests. I know that we are seriously risk averse in medicine (particularly in birth) and that fear of what could possibly happen looms over what is more likely to happen.

I know that evidence-based medicine is only as good as the evidence we have; so often, the data is either lacking or extrapolated. And that informed consent-- while held up as one of the most important principles of Western medicine-- is undervalued in every day practice. When was the last time a physician really went through the evidence with you on the flu vaccine or your mammogram? When did someone really explain the risks versus benefits of taking a cholesterol-lowering medication? When did the surgeon tell you how likely your sore knee would feel better after a clean-out?

This stuff (i.e. risk) is really hard to talk about!

                                                        ****
I love data. I love studies. I love information.

I'm an evidence-based medicine girl at heart. My patients and colleagues are accustomed to hearing me reference the medical literature ad nauseam. Shadow me for an hour or two, and you could record the number of times I say things akin to "Studies show" or "The data is clear" or "The evidence is not really there."

But, to be perfectly honest, when we were talking about my uterus and my post-operative recovery and my risk of death and my risk of long-term complications, the numbers began to feel arbitrary. The bulk of my decision became focused more on matters of faith than of science.

The truth is that I believed in my uterus. I believed in my birthing potential. I believed my baby and I would be okay. But I couldn't sort out whether I was basing my decision on too much magical thinking or too little critical thinking.

In my case, US experts have decided that a 10% risk of uterine rupture is too risky to offer women a choice but that 1% is acceptable. A trial of labor after cesarean section is considered relatively safe when attempted in the prepared environment, but a trial of labor after myomectomy is considered too risky. What does 10% risk of rupture even mean?  Ninety percent actually seems reasonably good odds, particularly considering my history.

Discretionary cutoffs do not feel very scientific to me, but such cutoffs are the foundation of many recommendations in medicine-- at some point, someone has to decide. What is a "normal" vitamin D level? What is an "acceptable" false positive rate with mammography? What percentage of falsely positive genetic screening tests are we "willing to tolerate" to not miss an abnormal baby?

To make matters worse, my reading of the literature on the topic of vaginal birth after uterine surgery was quite different from that of my expert/surgeon and my expert/obstetrician. Of course, I was deeply personally invested and not at all objective. But the more I read, the more disappointed I was in others' understanding of the information. When I read the primary articles (and I consumed all of them), I found that though officials consistently quote a 10% uterine rupture rate, this clinical question had never actually been studied in the United States. The quoted risk was entirely theoretical.
I discovered that in Europe and in Asia, the very question I was asking had been studied in several smallish papers and that their conclusions were different than my doctors' conclusions. In Japan, doctors gave 221 women who had had the same surgery I had the choice of cesarean section vs. attempted vaginal birth. In the end, they had zero uterine ruptures and a vaginal birth rate higher than our vaginal birth rate. In France, doctors did a similar study, and 80% of women managed to birth vaginally; the only uterine ruptures found in women with scars like mine had occurred prior to the onset of labor. In Italy, though women are generally advised to have a cesarean,  it is acceptable to choose to have a vaginal birth; and there too, they have no recorded uterine ruptures. From my read of the literature my risk of uterine rupture was nowhere near 10%. And  while the studies were small, they were reassuring.

                                                             ***

The pre-dinner straw poll came out 12-7. Twelve in favor of vaginal birth. Seven in favor of cesarean section.

I should stop here and give a caveat: all of the physicians present that night were family medicine physicians (two OB friends participated via email). I had invited each person specifically because they were either doing obstetrics as part of their daily jobs or still had a professional interest in birth. Four had done surgical fellowships and performed cesarean sections regularly. A few attend in high risk birth but most take care of low-risk mothers and babies. Many were mothers or fathers themselves. Several had had their own home births.

In other words, I knew I was dealing with a more "pro-vaginal birth" crowd from the get-go and that I would have to take this bias into account. It is not mere coincidence that their general bias was aligned with my own-- after all, they are all my people. I wasn't surprised that the initial vote was 12-7 in favor of vaginal birth, and I was most curious about the seven who voted for c-section. Was it the surgeons? The fathers? Some set who were more risk-averse?

A friend pointed out what he viewed as the most dangerous bias in the room: everyone present that night loved me. That love would clearly influence opinions-- it turns out-- in one of two directions. Some expressed fear that if something happened to me (e.g. my uterus ruptured, and I died), they could never forgive themselves for voting for a vaginal birth. Others expressed that their love for me and my desires made them want what I wanted, and since I clearly wanted a vaginal birth, they had to go along with that.

The discussion was lively. People were engaged. We divided into small groups and dug down deep into the science. There were statements about risk assessment. Conversations about how prepared a hospital really could be for an emergency. People on the web looking for specific details they couldn't quite remember, others passing the charts around. Backs and forths about what the numbers said or didn't say.

I mostly listened-- clarifying a detail here and there-- and watched. It was beautiful-- like an improvisational dance-- brilliant health care professionals doing what they do best: inquiring, probing, dissecting the science, arguing the sides, struggling with the grayness. Engaged, impassioned, and fired up. Those few hours captured exactly why it is that I became a doctor.

A surprising number of people were nervous to take a stand. They were jazzed to discuss the theoretical but when asked to vote publicly almost everyone refused. "Let's do it anonymously," several people cautioned.

Someone asked,"Is the question would I do a vaginal birth or do I think you should? Because I think the answers would be different." Fascinating. Each of these individuals spend most of their days counseling and advising other individuals on risk vs benefits: vaccines, mammograms, antibiotics, surgeries. When we do this twenty times per day, do we ask ourselves these same questions? Do we read so deeply. Do we engage so avidly?

I found myself reassuring the group that I wasn't bound by the vote-- that no matter the outcome, I still maintained choice in the matter.  I wanted what I imagine my own patients want: clear directions when there is one right decision and reasonable options when (as is often the case) there is more than one way to proceed.

                                                                        ****

The final (anonymous) vote that night was 12-7. Again twelve in favor of vaginal birth, seven for c-section.

Interestingly, after we were done, four people came up to me and confided that they had flip-flopped by the end of the discussion-- that is, two who had initially voted for c-section went to vaginal birth, and two who had initially voted for vaginal birth went to c-section.

Of all the amazingness that happened that night, the flip flops were the most helpful for my own process. The flip floppers confirmed for me that there wasn't a right answer, that smart thoughtful people can engage in the same material and come up with completely opposite conclusions, and that risk assessment is always personal.

This doesn't mean that decision-making is entirely irrational or that we should abandon the practice of informing our patients or of having educated discussions. It does mean that we patients and we doctors should gather as much information as we can bear to gather, have the benefit of others to help us interpret the information, and ultimately respect that what each individual decides is unique to that individual.

Every decision we make-- be it
health-related or relationship-related or career-related, or even ice cream flavor-related, contains an unmeasurable mixture of critical and magical thinking.

And that is what makes life (and my job) so interesting.