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.

There are these moments

There are these moments between when a doctor knows something and when a patient does not.

Potential spaces.


And, while for patients, such space may be filled with hope or dread or some combination of the two, the same space means something different for the doctor. After all, it's not my pregnancy or my heart; it's not my father's chest x-ray or my son's leg bone. But it is my patient. And my patients' experiences inevitably become a part of my story. My story fills in every day with all of these unique moments-- the discovery of an unintended pregnancy, the surprising death of a father, the unanticipated complication, the missed lab finding, the remarkable recovery. The good and the bad.

What I say, the look on my face, or the gesture I make may be remembered forever. Especially if I do it wrong. Or even if I don't get it quite right.

Sometimes these potential spaces are wonderful--  the few seconds between when I put an ultrasound probe on an anxious pregnant woman and see the blessed heartbeat and when the words come out "all is well". The pathology report coming across my inbox announcing the mole was not cancerous. The marked improvement in a heart's ejection fraction.

Then there are times I wish I didn't know. Or at least I didn't have to be the one to tell. The times I must walk into a room, sit upon a stool, take a deep breath and deliver the bad news. The life-changers.

Three times this week, five times this month: the cancer in the colon of the woman who'd been losing weight, the non-viable pregnancy in a woman who tried for six years, the brain tumor in the young dad who'd been having headaches, the syndromic features in the baby born just yesterday.

Who am I to do the telling?

I am just a regular human being whose fridge has moldy leftovers and whose car is in desperate need of an oil change. I have children who I get impatient with, toenails that need trimming, and a tendency to be a bit of a know-it-all. But I also went to school for a very long time and have spent many years of my life trying to understand how to distinguish between health and sickness, learning how to communicate the difference effectively, and practicing how to be present with patients through all of it. Some days, I feel unequivocally qualified. Other days, I literally look around and think, "Me? You're trusting me?"

Am I sure?

So often, I am not. And yet patients want me to be. They want me to be sure when I reassure them: "No, don't worry. Yes, you will recover. No, it's not serious." They also want me to be sure when I give bad news. And so do I. I want to be 100%-absolutely-without-a-doubt sure. I want to know as much as I possibly can about this diagnosis or your lab result or this condition I am going to name for you.

Years ago, I told a young man I was confident he did not have cancer; several months later, we discovered, in fact, he did. He died shortly thereafter. I will never forgive myself for my naive certainty. I will never again be as sure as I want to be. But I do my best, my very best, to gather as much information as possible, to be informed, and to be thoughtful. I trust that there is tremendous science behind much of  medicine,and I try to be clear with my patients where the science gets soft and where my knowledge runs out.

All that said, to be perfectly honest, no, I'm never sure.

How much do I say? 

We were taught in medical school that when you deliver bad news, people hear the first few sentences and then shut down. I've seen it, it's true. Their eyes blur, their ears get fuzzy, they literally float away.

And there I sit. On the stool. With more to say.

In each of those moments, as I watch my patient hover overhead, I find myself confused, insecure, and surprisingly unprepared. Do I stop after the first few sentences? Do I leave them to their fuzzy blur? Do I smile? Do I frown? Do I give them the reference? Do I hand them a piece of paper? Do I hand them a tissue? Do I warn them to stay off the Internet? Do I . . ?

There is no one correct answer to any of these questions. For each of us is unique and needs something  different in each of these unique moments. And this is why relationship is so very important-- how, by knowing you, I can provide you with the right amount of answers in the right amount of time.  Too bad relationship is so undervalued. Too bad, too often you have no idea who I am. I just met you seven minutes ago. Too bad you don't know that I, too, struggled with infertility, that I lost a dear cousin to alcoholism, that I want nothing more than to be with you, right now, in this moment (despite my body language stating the opposite). It was for these very moments I became a physician, after all. Yes it was.

A few weeks ago, I supervised a physician in training giving bad news. I had literally never met the patient, and I stood there in the corner, watching the learner do what she will do hundreds of time, perhaps for the very first time. I wondered. Who is this woman? What does she need from us right now? How can we best serve her? Will I ever see her again? One thing I do know, from my experience as a patient and as a physician, she will flash back on this moment forever-- the buzz in the hospital room, the lighting, the words tumbling toward her. She may not remember the faces or the names, but she will surely remember the feeling, the emotion, the tone.

And it's not just her that remembers. It's me too. My big errors are not necessarily the procedural ones (though I have written in the past about some of those). My biggest errors are the human ones. The times I didn't say enough. Or the times I said too much. The time I put my hand on the doorknob before you were done, the times I was human.

What if I want to cry?

Sometimes I do cry. But usually I don't. And I'm not sure if it's professionalism or paternalism or some other -ism that prevents me from doing so. Probably mostly it's just that I am a private crier. 

But also, this moment, this little space in time, really isn't about me-- it's about you. I am merely a blessed witness, a privileged counsel, a space holder. Some higher force put me in this room, in this moment, in this space to be with you and to offer you-- I hope-- exactly what you need. If I cannot, if I did not, I am sorry.

What I can promise is this: when I leave the room, I stuff this moment into my bulging bag of moments, into my disorganized file cabinet of doctoring, and carry it around with me forever. It changes me and challenges me and teaches me and hopefully makes me better the next time I have to do it again.

So, thank you.

For these moments.

Are We at War? The Vaccination vs. Anti-Vaccination Situation

http://www.egmnow.com/platforms/

In light of the current measles outbreak, I'd like to take a moment to reflect on the tremendously divided nature of the vaccine debate (or lack of debate) that exists in our country. It feels eerily similar to the Red vs. Blue State divide that has plagued us now for several decades. In both conflicts, there exists such fear, such misinformation, such geographic isolationism, such supreme sensitivity, and such a lack of communication that we simply stand opposed to one another without any productive conversation. I'm afraid that if we never come together to talk about these things, we'll make no progress.

 And, like many, I'd really like to see progress.

Let me out myself first: I am pro-vaccine. I come to the table with a very strong opinion that vaccination is a good thing. My son is uber-vaccinated-- because we have traveled extensively since he was an infant, he had early vaccines for measles and hepatitis A and is even vaccinated against yellow fever and typhoid. Just this week, he had his kindergarten boosters. I always get the annual flu vaccine, and though I am not convinced the data on pregnant women getting a whooping cough vaccine in the third trimester is that robust, I pulled up my sleeve and ceded to vaccination just last month-- trusting that the risk is minimal. I'm a public health enthusiast.

All this being said, I work intimately with hundreds of families who believe otherwise-- and I don't only work with them, I love them and care for them, and counsel them.

As a family doctor caring for a population who chooses overwhelmingly to make alternative vaccine choices, I often find myself in the uncomfortable place where the two worlds collide. And while I consider myself a  vaccine believer, I also find myself intensely offended by the denigrating tone so many take with people who choose to make the choice NOT to vaccinate. Perhaps it's because I know them personally. And I know that they want what we all want-- what's best for our children. It's just what's "best" may not be so black and white for some as those of us believers want to believe.

I also know that berating parents for the decisions they are making for their children is unlikely to change their minds.

After all, what was your response the last time you were berated?  Did you say, Hey thanks for calling me uneducated and stupid and ignorant. You are soooo right, let me reverse my entire decision-making process and go with yours?

Doubt it.
                                                                         ***

Vaccinators (of which I consider myself one) are those I will call "vaccine believers". That doesn't necessarily mean we believe in God, Santa Claus, or the Republican Party. In fact, a large proportion  is made up of  liberals and skeptics: academics, journalists, returned Peace Corps Volunteers, scientists, and scholarly folk. But vaccinators are a mixed bag: we also include immigrants, the urban poor, and others who either aren't empowered enough to question authority or those who have personally experienced vaccine-preventable disease. Most believers have never read a book or a study about the safety of vaccines-- even the scholarly subset. They don't need to. They take the recommended schedule (available here), follow it like a road map, and trust in the integrity of the institution of medicine and the wisdom of their predecessors. Both instill in them a steadfast trust in the value of vaccines. Perhaps most importantly, believers are descendants of vaccinators. Their perception of risk is reinforced by the community in which they live and by stories of vaccine-preventable illness.They may have traveled to a country where they have seen victims of polio or meningitis. They may be from one of those countries. Or maybe not. They don't harbor suspicion about the morality of governmental recommendations-- in fact, they trust and embrace both the integrity of science and the righteousness of health policy-makers. They do question the morality of people who choose to put communities at risk for their own personal interest.

Anti-vaccinators are those I will call "vaccine atheists".  Again, this designation has nothing to do with religion-- in fact one of the largest outbreaks of measles prior to our current one involved an enclave of orthodox Jews in New York who were choosing not to vaccinate based on religious teachings (see report here). I'm just borrowing recognizable terminology. Where I live, most anti-vaccinators are not particularly religious, though many would call themselves "spiritual". Like believers, atheists are a mixed bag: some are quite educated, others are not. For a range of reasons-- I'm not always sure why-- they do not fear the diseases that vaccines are targeted to prevent. They don't believe in the inherent value of immunization-- and they believe that the potential risks of said vaccines are more likely and more dangerous than the diseases themselves. Just like believers, most vaccine atheists have not extensively read books or studies about the safety of vaccines. They, too, don't really need to. They know vaccines carry risks, and they choose not to chance those risks. Their perception of risk is reinforced by the community in which they live and by isolated reports of horrible outcomes after vaccination. Some specifically fear autism, but for most, the theoretically risks are much more complex. Importantly, most are descendants of non-vaccinators. They look at the CDC recommendations and scoff at the ridiculous number of immunizations recommended. They know that there is always uncertainty in any medical intervention, they wonder what the actual risk is for their child, and they question both the science and the moral integrity of those making official recommendations.

                                                                ***

So, you see, there might be more similarities between the two groups than we might have previously guessed. We are all products of our upbringings. Neither side has read much. Neither can quote validated data. We both dig in our heels and hold our positions. And thus we quickly forget that we share some commonalities-- namely we live on the same planet and maybe even next door to each other, and we should be TALKING to each other.

Here's what I propose we talk about:

1) Fear
Vaccinators fear vaccine-preventable disease. They do not want measles, influenza, meningitis, or polio to be running around our country (and our world) infecting vulnerable children or frail adults. They do not want to return to a place where people die or are disabled from vaccine-preventable illness. Vaccinators also fear that decisions of others not to vaccinate put their children at risk. I get it.

http://wrightliving.com/fear-feel-alive/

Anti-vaccinators fear side effects, preservatives, chemicals, and immune loads. They fear the unknown. And they fear these more than the risk of illnesses that most have never seen. They do not want to expose their children unnecessarily to toxins that may put them at risk. Vaccinators may dismiss these fears-- citing examples of millions of children who have received such toxins without untoward side effects-- but in so doing, they neglect to validate that science is terribly imperfect, that in fact, scientists have frequently historically reversed themselves on interventions once deemed safe and necessary.

Let's talk about what scares us, why it scares us, and see if we can find some common ground. Let's talk about why some are afraid of the diseases and others of the vaccines. Let's see if we can reasonably sort out what we should be afraid of. . .and which fears we can probably set aside.

2) Misinformation
This is the trickiest for me-- as a scientist, doctor, and general book nerd, I love reading the data. My patients will tell you that a most common phrase out of my mouth starts with, "Studies have shown. . .". followed up by some really cool meaningful information that helps back up my recommendation.

http://ninapaley.com/mimiandeunice/2010/09/17/misinformation/

And yet, as I have tried to find good information for my patients on the topic of vaccine safety, I have been terribly unimpressed-- by both sides of the topic. Most of the educational materials the CDC publishes is watered down, does not directly address my patients' specific concerns, and basically ends with "trust us". Now, I do trust the CDC, but not everyone does, and I can understand why. The CDC material often feels dismissive and, frankly, a little bit lacking. That being said, I find that most of the anti-vaccine material is inflationary and based in paranoia and fear rather than compiling what limited information is available. I have ordered at least half a dozen books to read on the topic and been thoroughly unimpressed by most of them.  For my vaccine skeptical families, I find myself recommending "The Vaccine Book" by Dr. Sears, which is imperfect but seems the best marriage of the two-- if you have other recommendations, please do let me know.

Let's talk about where you get your information. I'm curious. Can you please share resources you have found helpful? What about some that are unhelpful? Who do you trust? Why? Why not? What makes information trustworthy? What makes it untrustworthy? How much weight does anecdote carry in your decision making? What about a large population study? What can I do as your fellow human to make information feel more helpful?

http://www.washingtonpost.com/blogs/wonkblog/wp/2015/01/27

3) Geographic isolationism
Just like red versus blue, carnivore versus herbivore, and God versus not-God,  we humans tend to surround ourselves with people who have similar thinking and similar modus operandi. Research shows that differences in vaccine uptake are extremely geographical, which literally means that our neighbors reinforce whatever set of beliefs we tend already to have. When we geographically isolate ourselves, we conveniently reinforce our own beliefs (right or wrong) and protect ourselves from intelligent conversation that might challenge those beliefs. And in this way, we don't encourage ourselves (or our counterparts) to develop intelligible and meaningful responses to real and important questions. For example, why are some people so scared of preservatives in vaccines and others aren't? Why are some people so scared of vaccine-preventable illness and others aren't? Why might someone you love and respect make a totally different decision about something you find morally reprehensible? Shouldn't we know the answers to these most basic questions? . To get answers, though, we have to ask. And to ask, we have to not only come into contact with but also feel safe in the company of those who might think differently than us.

Let's reach across the aisle and be curious (and I mean non-judgey curiously curious) and cross over the line every once in awhile. We might be surprised to find ourselves more educated because of it-- being curious with my patients has certainly led me to read more and understand more what people are afraid of. And my patients being curious about my thoughts has hopefully helped them make informed decisions.

4) Sensitivity
Even in my own social circles, I have found the topic of vaccine choices to be off limits in mixed company-- other than in my exam room where I have some say over what conversations are cultivated. Living in Sonoma County, I am well aware that I am often in mixed vaccine company, and as a mother, I wouldn't touch the topic with a ten foot pole. Immunization in my town is right up there with super stigmatizing topics: how much money your family makes and whether you do crazy things in your bedroom. Rather than friends and family being a safe venue for intelligent conversation, I find that people are so sensitive about their choices (in both directions), that we're afraid to ask. In fact, I was out for coffee with a doctor friend just this week, and he casually inquired about another doctor friend's vaccination views. He knew my perspective and felt safe asking me about me, but had never discussed the issue with her, knowing it could get sensitive fast. This returns me to the important notion that we are so influenced by what is happening in our community, so that even people I might consider vocal vaccinators find themselves silenced. I am supremely aware that I may isolate and offend my patients if I simply try to bulldoze them with personal opinions-- I believe it is my duty as a physician to be sensitive to their vulnerabilities and present the topic in a loving and respectful manner-- even (or maybe especially) when I disagree.

Can we lower our own sensitivity about decisions we make for our families and temper our defensiveness so that we might have meaningful conversations on the topic? What might those conversations look like in a non-judgmental space? Might we find some more middle ground?


5) Lack of communication
Communication, of course, involves all of the above issues already mentioned and so much more. And while I personally feel strongly that my own children be fully vaccinated for their well-being as well as the well-being of our community, I am utterly turned off by the general blasting of non-vaccinators. It simply will not work to scare or judge or berate parents into making different choices. It won't work. This is not a war. This is not really about me versus you. This is an opportunity to engage in meaningful conversation about true risks of real disease and true risks and benefits of vaccine, true fears and true needs of parents to do what is right for their child AND for public health and feel comfortable doing so.

Do me a favor, and cool your jets. Ask someone you know and love but that you assume has a different opinion than you on the vaccine matter to share their reasoning. Listen. Discuss. And then share yours. Then listen some more. You might be surprised about what may come out of such a conversation. You might learn something, you might teach something, and we may all be grateful for the step forward.

Itchy butt, itchy butt please go away.

For those of you who've never had an itchy butt, the concept behind this post may seem funny (as my mother would say, both a little "funny ha ha" and little "funny odd"). But for those of us who have ever suffered from an itchy butt, this is no joke.

Itchy butt is disconcerting, anxiety-producing, and downright miserable.

It is one of those super embarrassing topics-- one of those oh-no-my-doctor-has-her-hand-on-the-doorknob-do-I-really-want-to-mention-this-topics, hanging right up there with discussions about the quality of one's sex life, underarm odor, and nose-picking. It's not something people like to talk about, even with their most intimate partners. It makes people feel dirty, anxious, desperate, undesirable, isolated, even crazy.  But estimates are that somewhere between 1% and 5% of the population suffer from itchy butt. So if you're lucky enough to never have suffered, say your prayers that you don't become the next victim.

I've seen young men certain they have a sexually transmitted disease, old women sure they have cancer, little kids (whose parents, having spent time googling, certain their child has pin worms, which sometimes they do) and everyone in between. It's thought that men outnumber women four to one, with the highest occurrence in the 40-50 year age range, but still common in people ages 30-70.

And-- big personal revelation-- I've suffered myself. It's wretched.

Itchy butt in doctor's speak is termed Pruritis Ani. Pruritis means itchiness; ani is an obvious reference to the anus, the anatomical structure that is the exit door for your bowel movements (or, as is my four-year-old's favorite word, poop). Yes, we have an actual medical term for it-- proof that it's prevalent enough to merit it's own diagnosis.

There are two types of itchy butt: primary/idiopathic (i.e. we have NO idea what causes it) and secondary (i.e. caused by something else). Somewhere between 25-75% of cases are secondary. That's a pretty big range-- a stat that basically means we can find an actual cause in only about half of cases. In the other half, who knows what started it?! An uncertainty leading to more feelings of insanity. That's why so many people have the experience of going to their provider to be seen, finally getting the nerve up to say something, and then feeling let down by the lack of answers. Too often, there are no answers to be had. Sorry.

The most common and obvious cause of itchy butt are hemorrhoids (swollen, inflamed veins in your anal region) and anal fissures (basically scrapes or little cuts in the anus that just have a hard time healing because, well, we all use our anus quite frequently). Hemorrhoids are caused by increased pressure down in your bottom. They are super duper common and often happen when people are constipated, have chronic diarrhea, are pregnant, or overweight. About 50% of the population will have a hemorrhoid by age 50. Ugh. Fissures are pretty common too-- you have an especially big poop or an especially hard one, it causes a little abrasion, and it takes awhile for that to heal.

Other less common causes of itchy butt include:
Skin stuff: allergic dermatitis (e.g. eczema or an allergic reaction to soap, lotion, lubricant, toilet paper) , psoriasis, seborrhea (cradle cap of the bottom), squamous cell cancer
Infectious stuff: fungus (e.g. yeast), parasites (pin worms are common, especially in kids)
Some medications: examples include tetracycline, colchcine, quinidine, local anesthetics, and neomycin
Some systemic illnesses: diabetes, lymphoma, obstructive jaundice, thyroid dysfunction, leukemia, chronic renal failure, and aplastic anemia
Foods: perhaps tomatoes, chocolate, citric fruits, spices, coffee (including both caffeinated and decaffeinated), tea, cola, beer, milk and other dairy products
Psych: anxiety, agitation, and stress
Other: fecal incontinence, excessive humidity, the use of soap, excess scrubbing of the anus, chronic diarrhea, and menopause.

Lots of reasons, many of which may apply to you. But, remember, HALF the time, there is no reason to be found.

Here's where itchy butt gets frustrating.

There is something about itchy butt that predisposes people to a vicious itch-scratch cycle in a very innervated area. Yes, our anus is super well innervated. And the combination of that cycle and the insane number of nerve endings down there, often leads to an intolerable impulse to scratch the perianal area. Again and again.The urge is classically worse after bowel movement, worse at night right before going to sleep, and sometimes even worse in the middle of the night.

This often leads to literally clawing the skin. Even for the most controlled human being, the urge to scratch can be tremendous, and even a little extra rub-dab-- with a wet wipe, a cream, a salve. And those very wipes and salves may be part of the problem.

Wet wipes, for example, which may seem to get you cleaner than toilet paper, contain preservatives that are commonly known to cause/worsen contact dermatitis. That means you use a wet wipe thinking it will make your itchy butt better, and it may only be making the problem worse. For these reason, it's reasonable to avoid all wet wipes (even those that claim to be gentle, unscented, etc).

Desperation also leads people to try all different kinds of products, natural and unnatural-- including hydrocortisone, witch hazel, calendula, lotions of a wide variety, Chinese herbs, Benadryl cream, cool water, hot water, comfry leaf, ice cubs. You name it, someone's tried it. Yes, even capsaicin (that's the stuff in chili powder that makes your tongue tingle). And, fortunately, in some cases, SOME of this stuff helps. But I'm here to tell you that, unfortunately, in most cases, most of these things just cause more skin irritation, give you further excuse to rub things on (furthering the itch-scratch cycle) and don't lead to ultimate relief.

The solution MAY be simpler than you would have thought.

Here's my prescription for itchy butt--  ridiculously simple, but often simple is the best!

First, if you are truly worried you might have a hemorrhoid, an STD or some other lesion down there, please go see your primary care provider. Let someone else take a look. If she sees something, she'll treat it.  And maybe you will get better. And try not to be embarrassed. If you've already done that and heard the disappointing, "It looks pretty darned normal back here, nothing to worry about",  please don't despair. It's not all in your head. It's real, it's itchy, but it's treatable. Go for simple.

1) First, STOP scratching! (So much easier said than done). Do anything in your power to stop scratching: cut your fingernails, wear gloves, wear tight pants, wear three pair of underwear, meditate. Anything that works to keep your hands away from those pesky little nerve endings. Break the cycle.

2) Next, stop putting any products down there, including soap when bathing, anti-itch creams, herbs, etc. Most topical formulations are probably contributing to irritating your skin, and you need to give the skin a chance to heal. Plus, any time you put something down there, it's an excuse to give a little scratch. And then you are back at it again.

3) Stop using wet wipes. I know, counter-intuitive, but trust me.

4) Get yourself a squirt bottle or spray bottle or some sort of other water container, and each time you either feel the urge to itch OR have a bowel movement, use water AND only WATER to clean yourself.

5) Resist the urge even to use toilet paper (it's just too tempting to give a little extra rub while your down there, and that little rub is part of the problem). It's not a matter of getting yourself cleaner-- even if you are convinced it's so.

6) If you are unbearably itchy, always go back to the cool water. Squirt, spray or sit in it. Do not rub it on.


No prescription is ever 100% effective, but I can offer you some hope. It really does work! And you can move on from focusing your crazy frenetic anxious all-consuming energy on your anus to somewhere more productive. 



Additional resources:
http://www.patient.co.uk/forums/discuss/browse/pruritus-ani-1740

What happens when a doctor does harm?

When I was in my third year of medical school, I remember telling my mom (a dedicated nurse for over 45 years) about a negative experience I had during a rotation on the hospital wards.

I don't remember even the vaguest of details surrounding the actual event, but I will never ever forget my mom's response that day: "Some day, honey," she said, "It won't be about you anymore. It will be about your patients."

I remember feeling rather hurt at the time, as though my mother was being dismissive of my feelings-- chastising me for thinking I had a right to be a medical professional and a real person at the same time. (And believe me, medical school already does a doozy on one's sense of person hood). I wanted to be part of the story. On some level, I wanted the story to be about me.

A few years later, as a brand new resident physician, I shared her advice with several of my similarly-green colleagues. We all chuckled at the time because so many of our first experiences as newbees (e.g. first deaths, first postpartum hemorrhages, first cancer diagnoses, first arguments with a floor nurse, first morphine prescriptions, first you-name-its) seemed to have everything to do with us. We were learning, after all. And though we were learning through the real life experiences of living breathing patients, we were still our own main characters in our own personal novels--  fumbling our way through a series of awkward and sometimes painful lessons on the way to becoming experienced clinicians and, hopefully, healers.

Now, surprisingly enough,  in the the almost-eight years since our conversation, my mom's once painful words have comforted me through many challenging situations.  I have carried her counsel through frightening birth experiences, challenging family meetings, heated discussions about end-of-life choices, angry patient encounters, awkward teaching moments, even through my own painful infertility journey while caring for a plethora of fertile patients.

When things have gotten complicated, I have repeated her counsel to myself, and I have found relief rather than resentment in the reminder. 

"This isn't about me," I tell myself. "This is about my patients."

It's about his sick body. Her mental illness. His struggle with weight and substances. Her wishes. I am so often privileged to bear witness, to hold hand, to give counsel, to be present, to help guide. But, in the end, it is not about me. It's about my patients.

This isn't to say that I have completely removed myself and any emotional investment from my patient care. No, no, no! Quite the contrary.  In fact, by reminding myself that a patient's particular situation is not about me, I am able to really hold the space for that patient and be as present as possible for them during his or her journey.

Except when I cannot.

Unfortunately, this month, I have been confronted with myself yet again (gosh darn it, I just cannot get away from myself as the main character in my own story)-- in a very raw and real way. This time, however, I am also featured as a main character in someone else's (i.e. my patient's) painful story, and I wish it weren't so.

This week, I must confront the most serious medical error I have made in my career. I messed up. I did not keep my patient safe. In fact, I caused harm. To another human being.


What happens when a doctor does harm?

And what happens when I am that doctor?

Is any part of it about me?

***

Obviously, my first responsibility in reconciling my error is to my patient, to the very patient to whom I have vowed to do no harm. That person to whom I have pledged to care for and guide and counsel, and who has entrusted his/her body to my skill, my experience and my fallibility. And to that patient, I must apologize. This much is very clear.

I am sorry. I am so sorry.

But then what?

Do I apologize again?
And again?
Beg for forgiveness?
Do I throw myself on the floor and cry?
Do I stay up all night trying to understand exactly what happened?
Do I stay up a second night trying to justify a known medical complication?
Do I consult a higher level expert? A more experienced clinician?
Do I dwell?
Do I stop doing what I am doing for fear it will happen again?
Should I second guess my training?
Even worse, second guess my judgement?

All of the above, I guess, and then some.

Yes, I have gone back to review the literature.  I have also reread my own documentation of the event, reconsidered the circumstances, imagined how I could have done something differently, sought the advice of my esteemed colleagues, talked to my boss, taken a long swim, summoned my inner perfectionist along with my well-trained professional side. And cried a little.

After all, I hurt someone. And I cannot really take that back. Ever.

In so processing, I have also to remind myself that errors happen-- that, in fact, that this error I made is actually well-documented and, to a certain extent, expected. It happen somewhere about 1 in a 1000, and I'm getting closer and closer to that thousand. The longer I am in practice, the more procedures I will perform. The more procedures I perform, the more errors I will make.

Ok fine. But is there room in my own head and heart for error? Can I forgive myself?

Like most physicians, I am a pretty much a Type-A-obsessively-compulsive-perfectionist who-- despite the appearance of both my refrigerator and my underwear drawer (both are always disasters)-- doesn't really let myself off the hook very much. I expect perfect from myself. Always.

***

And so, I ask myself--after I first make darned well SURE to take care of my patient-- isn't  my second responsibility to myself? Isn't there also a part of this that is about me?

Me the woman, me the physician, me the fallible one, me the healer?

"Oh big and dangerous ego," I say to all those mes, "Take a step down my dear, you are so fortunately imperfect. You screwed up." And, though this one particular case may have had a different outcome, screwing up is inevitable. "You will screw up again, no doubt."

While this is not my story, I am still part of the story. And though I have not been physically damaged by this turn of events, I will never be quite the same.

I am certainly not alone in making medical mistakes-- even big mistakes-- ones that my patients will have to live with forever. Knowing that I did nothing with mal-intent or beyond the scope of my training. Granting that next time I will be more nervous, more tentative, and hoping this is an acceptable outcome for myself. And that if I move forward from this circumstance changed, may the change be a positive one for all who I serve in the future.

My I continue to be as good as I can be.
May I be self reflective.
May I be humble.
And may I accept-- not just occasionally but always and inevitably-- my own imperfection.

To screen or not to screen, that is the pregnant lady's choice. . .

Screen.
Screen.
Screen.

That's a lot of what I do as a primary care provider: I screen for diabetes, high cholesterol, chlamydia, hearing loss, cervical cancer, obesity, alcohol misuse, depression, breast cancer, domestic violence, obesity, anemia.

I ask a series of questions, sometimes order a lab test or an imaging study, and then, voila!,  I give a literal pat on the patient's back or send a nice letter. "Your blood pressure looks great!" "I am so glad to hear you are exercising regularly!" "Normal pap, due next in 5 years!" "Nice cholesterol, keep up the flax seed oil!" "Nice body mass index, see ya' again next time!"

I love it when the screening tests come back negative.  That's why I pat so enthusiastically and write always using an exclamation mark. My patients love it too.  I feel good about keeping you healthy! You feel good getting a clean bill of health! Happy patient, happy doctor!

Except when the screening test comes back positive.

Then, what do we do?

First, the worry sets in:
Does that mean I have diabetes? Well, it might.
What is wrong with my cervix? We need to do another test to find that out.
Does my baby have a metabolic disorder? We will have to wait for the confirmation, maybe not.
Are you sure that test result isn't wrong--I feel just fine. . .Well, that's why we screen.


Then it can quickly get confusing:
So is this or is this not a problem? Hmmm. . . not sure, I'll get back to you.
Should I be worried? I don't know quite yet.
How invasive is the follow-up test? Let's talk about that.

Is it necessary? Maybe, maybe not.

Do I have the right to refuse? Always, mostly.


All this confusion, concern, and frustration may be lightened (or even avoided) if both patients and physicians ask and answer a few important questions BEFORE anything is ordered and resulted. Here, are those questions: 

1) Should I have the test in the first place?
2) Exactly what information will these tests provide?
3) What would I do in response to what is learned from these tests?

These three questions can be applied to any range of medical evaluations, including, for example, a cholesterol blood test, a cardiac catheterization (aka angiogram), an MRI, and even pee test for your healthy five-year-old. And, in my opinion, not only can they be applied but really they should be considered before the test is ordered.

***

Human beings like diagnostic tests.

While we don't always appreciate the results, we do value the clear and simple answers that come from these tests. Common examples of diagnostic tests with such clear answers include pregnancy tests, throat cultures, and gonorrhea tests. Yes, you are pregnant (wooo hooo!). Yes, you have strep throat (bummer). No, you do not have gonorrhea (phew, thank goodness, thank giddyup!).

But screening tests are a different beast. Screening tests are designed to capture a subset of the population that may be at increased risk for (you fill in the blank) ________ illness or event. They invoke uncertainty. They give a sense something might be wrong, but hold out the possibility that things may be just fine.

In this era of evidence-based medicine, we have more capacity to order more tests, check more levels, offer more studies, more images, and more screening. In theory, these screening tests pick things up early enough to make a difference-- to make the disease curable or treatable or manageable. Many people think more is better, but is that always true? Screening may save you from something as deadly as cancer, but, unfortunately, it's not always as simple.

As our tool set increases in breadth and depth, physicians and patients find ourselves questioning the validity of many of the things we screen, test and treat routinely: breast cancer, pap smears, prostate cancer, aggressively treating blood pressure, how tightly we should control blood sugars. . .even whether or not we should treat strep throat.
                                                                   ***
Prenatal Genetic Screening
As an example, I want to explore the intricacies and challenges of decision-making regarding prenatal genetic screening.

Prenatal genetic screening-- that is, checking during pregnancy to see if the developing fetus/embryo/baby is congenitally normal-- has been an ever-expanding field since it emerged in the 1970s. Today, it is standard of care at the first or second prenatal visit, regardless of a mother's age, underlying risks, or medical history, to offer women a range of genetic screening options.

This is my very least favorite part of an OB intake. It goes something like this: "Hi, nice to meet you. Congratulations on your pregnancy. I believe that pregnancy is a unique opportunity for me to care for you and your family during a time of wellness and growth. Pregnancy is a healthy state, and let's do everything in our power to keep you healthy. By the way, do you want me to order tests that will see if that sweet baby growing inside of you is defective?"

(Uh, awkward).

It's hard to delineate exactly what percentage of women are accessing prenatal genetic screening, but by including ultrasound evaluation in the definition, then close to 100% of pregnant women choose to have some part of prenatal genetic screening. If you consider non-invasive blood tests, I estimate about half of my patients choose this form of testing.

I have come to believe that most women choose to do genetic screening for one of three reasons: 1) The prenatal care provider is recommending it as standard of care (and boy do we have some serious super powers to convince people to do all kinds of things they don't normally do (remember that, colleagues, please)). 2) People like tests they feel confident they can pass. Most women assume they will have a normal/negative screen. Rarely I have a patient who is really worried about their genetic screen (usually an older mom, or someone with congenital abnormalities in their family), but these are generally the exception. 3) The risk seems low. These tests are non-invasive, non-traumatic for the growing pregnancy, so. . .well, why not?

A history of prenatal genetic screening
While there was the suggestion by the 1930s that there must be a genetic component to Down Syndrome, it wasn't until the 1960s that scientists finally proved that the cause is a replicated chromosome number 21. Down Syndrome (aka Trisomy 21) remains one of the most common congenital abnormalities among live births and one of the most causes of mental retardation. The predicted rate is 1 in 643 births in the absence of selective termination of affected pregnancies.

In the early 1970s, came the juxtaposition of the chromosomal basis for Down Syndrome with the realization that fetal chromosomes could be examined in the amniotic fluid extract of the mother. Welcome the first amniocentesis for genetic screening-- a test in which amniotic fluid is literally pulled out of a pregnant woman's belly and tested for the presence of chromosomal abnormalities. A paper on the topic published in the still-esteemed New England Journal of Medicine sealed the deal.

The lore is that the maternal age of 35 (often nicknamed "advanced maternal age", a term I HATE HATE as a now 37-year-old pregnant lady, myself) was chosen  because, at the time amniocentesis was introduced, the risk of pregnancy loss (due to amniocentesis) was less than the risk of discovering a genetic abnormality. By 1983, there were simmering ethical discussions encouraging offering amniocentesis to women of all ages, especially as the procedure became less risky.

In the early 1990s non-invasive testing arrived: specifically, maternal fetal serum alpha fetoprotein (aka MF-AFP or just AFP). This was the first test offered to all women (regardless of risk) to evaluate for open neural tube defects in babies. The most common neural tube defect is spina bifida. Historically this blood test was offered in the second trimester (weeks 15-20), at which time if a woman screened "positive" (that is, had an abnormal screen), she would be offered an amniocentesis to confirm the presence of an abnormality.

The AFP was soon expanded to the "triple test" (3 markers) and eventually became the "quad screen" (4 markers), which looks at four markers in mom's blood. These are AFP, HCG, estriol, and inhibin--today, we often refer to the combination as the serum integrated screen or the sequential integrated screen.

In 2007, ACOG decided that ALL women should have access to routine prenatal genetic screening (at a cost of somewhere between $100-$2000 per patient) before 20 weeks (aka 5 months) and women of any age could "opt in" for invasive testing. Invasive testing usually refers to either chorionic villous sampling (or CVS) done between 10th and 12th weeks of pregnancy or amniocentesis (aka amnio) usually done at 15-20 weeks of pregnancy.

It was also in 2007 that ACOG began endorsing the use of nuchal translucency (NT) ultrasound, a specialized ultrasound designed to detect Down Syndrome: the tech literally measures a collection of fluid at the back of the growing fetus' neck and gives you a risk score. Turns out that babies with Down Syndrome tend to have more fluid than babies without, so bigger measurements correspond with increased risk.

Chorionic Villous Sampling (CVS) is a test in which a needle is introduced either through the vagina or through the belly to retrieve some actual cells of the placenta (cells that contain the same genetic material as the baby's cells) and then do genetic testing on those cells. Amniocentesis (often referred to as just Amnio) involves a sampling of cells from the amniotic fluid similarly looking for abnormalities. The benefit of both these tests is their accuracy-- upwards of 99%. The downside is the risk, which is a biggie, miscarriage. It's rare, but still quoted at 1in 200 to 1 in 400. Low risk? Yes, unless you are that one who loses your baby.

And now, in 2014, many women can actually choose non-invasive genetic screening, though not quite covered yet by some insurances, certainly quickly gaining speed. These tests look for actual fetal DNA in a woman's bloodstream (imagine that, your baby's DNA is floating around in your bloodstream) and can do chromosomal analysis really early on and really accurately. As I see it, this is the prenatal genetic testing is definitely the screening test of the future: it can be done as early as 10 weeks gestation and it's really really accurate (>99%) for Trisomy (e.g. Down Syndrome). Only downside is it doesn't test for neural tube defects.

The other test not usually considered prenatal genetic screening but that should also be included is what doctors call "The Fetal Survey" and what most families consider "The ultrasound when you can find out whether you are having a boy or a girl." This is an ultrasound done at 17-20 weeks with a special focus on the baby's anatomy (brain, spinal cord, lips, heart, kidneys, etc). While this isn't traditionally included in the umbrella of prenatal genetic screening, it definitely adds credence to the information gleaned through the other tests. It can also be extremely reassuring to a worried family to "see" normal anatomy in their baby.

                                                               ***
Benefits of prenatal genetic screening

• Increasingly prenatal screening options are non-invasive. Previously women had to weigh risk of losing a baby (miscarriage rate in amniocentesis is quoted as ranging from between 1 in 300 and 1 in 500). Not extremely high but unacceptable if it's you it happens to). Now it's just another blood test, and those of you preggos know you get plenty of those during pregnancy.
• Reassurance that your unborn child is normal. As a parent, believing that your child is healthy is priceless. If things come back confirming that, parents feel really really relieved.
• With earlier and better screening, women have earlier and earlier option to terminate an abnormal pregnancy. Terminating a desired pregnancy is never simple-- but the earlier that decision can be made with the most information possible, the easier on the family. 
• Better preparation for child with birth defects (both emotional and medical management). It is hard for me to imagine a more painful situation than an unanticipated sick new baby. I have been in the room when this unwelcome surprise occurs, and it is terribly painful.
• Increasingly, women are delaying childbirth, thereby increasing the risk of children having genetic abnormalities. These women may be particularly inclined to having the most information possible before a pregnancy progresses.

Risks of prenatal genetic screening

• False positives (unneeded anxiety): if you are talking about the standard screening, there are actually MORE false positive prenatal genetic screens than true positives. That means that more people will be told their screen is abnormal and wind up having a healthy baby, than women who are told their screen is abnormal and have a genetically abnormal child.
• False negative (false reassurance): experienced providers have all experienced a family that had genetic screening and still had an abnormal baby, even one of the diseases picked up by the screening. No test is 100%.
• Screening doesn't pick up all conditions (even genetic abnormalities) but particularly those others that are not chromosomal, for example autism, cerebral palsy, and many other relatively common conditions.
• Doesn't predict severity of disease. Some children with Down Syndrome or Spina Bifida are extremely high functioning. Others require lifelong care. These tests don't shed light on the subtleties of your particular child's health issue. This often is difficult to know even after a child is born.
• Recommended follow-up is invasive testing (including amnio/CVS): people often say "Great, why NOT do a non-invasive test? What's the risk?" The big risk is that if it comes back Screen Positive (aka abnormal), the recommendation is still an invasive test, which has risks including miscarriage. These risks are rare, but it doesn't matter if it happens to you. This is actually changing quite quickly, as the non-invasive tests are gaining ground-- so hopefully this risk is decreasing as I write.
• Stress and anxiety: don't underestimate the power of stress. For every pregnant woman I have ever dealt with who had an abnormal screening test, the world falls down around them. They lose sleep, suffer tremendously, until more information is known. Worry and fear are powerful emotions
• Cost: thankfully, here in California, we have an accessible screening program that is covered by

_________________________________
And now, enough about prenatal screening. Back to our original questions that I challenge you to ask yourself for each and every test that is being ordered on your behalf:

1) Should I have the test (i.e. prenatal genetic screening) in the first place?
Ooooh, this is a hard one. I get asked this ALL the time when I counsel my patients through this decision-making process for prenatal genetic screening. There is NO right answer. I generally frame it in this way: For some people, having more information is extremely helpful, it enables them to use that information to activate. For others, having more information is anxiety-producing. Which are you? If the test comes back normal, you will be mostly reassured (though, screening tests are not perfect, and all providers can tell you about the time they delivered a baby that had a normal screen and turned out to be congenitally abnormal. Personally, I can also tell you about the time I delivered a baby that we knew was going to be abnormal and is now an almost 3-year-old normal girl.  This part of the decision is super personal.

2) What exactly does this test tell me?
As I discussed above, screening tests are not the same as diagnostic tests. None of the prenatal genetic screening tests (blood tests, ultrasounds) are going to tell you "what your child has". They will only give you a statistical percentage, that may be reassuring, e.g. as a 40 year old woman, you have a 1/500 chance of having a baby with Down syndrome, but based on this test, your individual risk is actually 1/50,000. This risk stratification can definitely be very reassuring-- but there is no guarantee that you will not be that 1 with an abnormal pregnancy.

3) What would I do in response to the results from this test?
This is a very big an important question when it comes to prenatal genetic screening. Though some might suggest that genetic screening is linked with early pregnancy termination (i.e. abortion), the truth is, there are other choices that families might make based on a genetic screen.

For example,
Some might certainly get a diagnostic amniocentesis, while another family might decide they aren't willing to risk an amniocentesis procedure. 
Someone might choose to birth (or not birth) at home.
Someone might choose to see a different level clinician (e.g. a higher level facility).
Some might prepare themselves emotionally for a special needs child.

Whatever your decision, it's worth it to at least consider how a general results may affect your own decision making. To be fair, it is actually very difficult to predict how individuals might respond to abnormal results until those results are sitting right in front of you.

As usual, mostly I encourage you to have an ongoing relationship with your health care provider, discuss the risks and benefits of any testing you are offered, and please ask questions!D It's your body and your decision, after all.
                        

Additional references:
http://embryo.asu.edu/pages/amniocentesis-prior-1980
https://ohiostatepress.org/Books/Complete%20PDFs/Rothenberg%20Women/14.pdf
www.uptodate.com

Let's talk about death, baby

Let's talk about death, baby.

"After all, what’s a life, anyway? We’re born, we live a little while, we die."

Let's talk about you and me.
Let's talk about all the good things and the bad things that may be.
Let's talk abooooouut death.
Let's talk about death.

Tune stuck in your head yet?

Sorry, mine too.

On a recent NPR podcast from Planet Money, the reporter said something akin to, "Death is kind of like sex-- not exactly something a teenage daughter wants to talk about, especially sitting on the couch with her parents after dinner on a random Wednesday evening."

So true.

Ever since I heard this amazing report about a whole town that got their death wishes in order, I have been singing this song (yes, in a never-ending loop that you too are singing), hoping that, when the time comes, I'll feel comfortable enough to sit on the couch with my son to discuss sex, and pondering my own personal ambivalence regarding death.

My death, my family members' deaths, my patients' deaths. Heck, even my dog's death. 

This got me thinking. Death is happening all the time (just like sex).
Death is inevitable (sorry, mom and dad, just like sex).
And death is unbelievably hard to talk about (no argument here).

But why? 

My answer is pretty basic-- just like sex (ahem, fellow healthcare providers, another topic for another day), I don't talk about death enough. And I don't really know how to talk about it.

Give me birth control. Ear wax. Diabetes. Flu shots. Eczema. Anal itching. Vaginal discharge. Zits. Anxiety. Toe fungus. I can speak on any of these topics with ease and knowledge. I can educate, reassure, empower.

Death, however, is a different matter entirely.

Truth be told, I'm not particularly good at talking about death. Yup, you heard me correctly, I'm a physician-- a family physician, and I'm bad at death. I'm awkward, ambivalent, and surprisingly nervous. I'm too frequently under-prepared, always wishing I had better words, more polished form, and more grace. I'm also young and blessed by health, which means I can avoid death a little more actively. 

On this particular topic, I cannot help but wonder, shouldn't I be better at this?

Yes, I should.

And yet, perhaps not unlike yours, despite not talking about it much, my life is pretty full of death. Okay, so maybe I get a little more death than the average Joe, but I am certain that if you were to sit down and list your own death encounters in the last year, you would find you have quite a bit of death in your lives too. After all, death is an inevitable part of life.

Here are a few of my death memories that stand out over the last year:

• My previously-healthy father-in-law faced several tremendously close calls with death over the last ten months, including a battle with flesh-eating bacteria (unfortunately, he lost his left leg) and an autoimmune paralysis that left him on life support for many weeks and in the hospital for months. 
• An 85-year-old supremely accomplished patient of mine with horrible arthritis of the spine but a mind as sharp as a tack asked me the other day about how she might gracefully end her own life.
• My husband and I recently finished reading EB White's Charlotte's Web with my 3-year-old son. He loved the book and listened actively and patiently to the story every night over a week's time. I wasn't so sure my little guy understood Charlotte's death until he overwhelmed us both with an intense emotional response about an hour after we read the last chapter (poor, sobbing heart). Ever since then, he mentions death frequently.  And by frequently, I mean daily.
• The daughter and 24-hour caregiver of a very old, very demented man (he is my patient) told me she feels guilty about making the decision to transition him to hospice. She's worried her siblings will look down upon her. And so she won't sign the papers.
• A 69-year-old healthy cyclist made a visit to see me to talk about how to document his final wishes. He told me that none of his adult children wanted to be his surrogate decision-maker. He was wondering if I thought it strange if he chose his girlfriend instead.
• Last year, a friend's dear puppy fell severely ill over a relatively short period of time. My friend and her husband had to make the painful decision to either spend a lot of money and time dragging the pup to specialist vets hours away or euthanize her. Though they felt good about their final decision, it was terribly sad.
• My husband's 92-year-old grandfather had been failing gradually over the last year-- until, that is, he agreed to get hospice care. Since then, he started eating again and even makes it to some family functions. We thought he was dying. Turns out he wasn't-- at least not yet.

Each of these encounters presents an opportunity to tackle the topic head on: to discuss how my father-in-law might really want to die, to enrich my son's understanding of life in the context of mortality, to empower my patient to choose dignity for her father, to support the difficult decision that is euthanasia and suicide, to enrich my own skills by simply practicing having the conversation. And I am embarrassed to admit that, in too many of the examples above, I tripped and fell or just ran way.

This is hard stuff.

And so, in an attempt to work on this obvious weakness of mine, I wandered into a reflection on why death is so hard to talk about-- for ordinary humans, doctors, and even super heroes.

Death is morbid. Uh, duh, you might say. That sentence makes no sense; morbid and dead are synonyms. But that's not really true. In fact, according to the esteemed dictionary of Google, morbid actually means "characterized by or appealing to an abnormal and unhealthy interest in disturbing and unpleasant subjects." Is death actually morbid, then? Maybe only if you believe it's inevitably disturbing and unpleasant. I can think of plenty of ways to die that would be disturbing and unpleasant; drowning, for example, one of my least favorite ways to imagine my own death. Burning to death another one that comes to mind. Recent media coverage about botched lethal injections definitely seem disturbing and unpleasant. That being said, the act of dying need NOT be disturbing, particularly if the dying person is comfortable and surrounded by people he/she loves, having felt like life has been sufficiently fulfilling and that its end comes with dignity bathed in love.

Death is uncomfortable. Or is it? How many of you have actually watched a person die, and I don't mean on TV or in the movies. I mean, sat there at there and watched someone take his/her very last breaths, his/her heart beat its very last beats? I have-- at least a handful of times-- and I am here to tell you that death CAN be uncomfortable-- the most uncomfortable death I have seen was a young man dying of liver failure as a result of his alcoholism. He died extremely uncomfortably. And the memory of his gruesome death is seared into my consciousness forever. It didn't need to be that way-- we all knew he was dying-- but the system let him down, didn't prepare him to be comfortable with his own death, tended his symptoms without confronting his mortality.  I have been in beautiful, quiet, peaceful, comfortable deaths, deaths in which someone literally looked like he/she moved from a place of sleep, to a place of final rest. And breathed a sigh of relief. Death nurtured life.

Death is scary. Definitely scary. No doubt about it. I know I am not the only person on the planet who (morbidly) imagines my life ending amidst the screams of a crashing airplane, or trapped underneath a body of water, or in a beeping-tube-filled ICU hospital bed.

Death is definite. Perhaps this is where death and sex do converge. Sorry, parents, every single one of your sweet children will eventually die (and close to that same number will eventually have sex).  Henry David Thoreau wrote "Death has beauty when seen as a law. Not as an accident. It as as common as life".  Perhaps it's the certainty that it will happen to each of us that makes it the most overwhelming. Inevitability is not always a man's best friend. Particularly in the 21st Century when we feel inclined to employ amazing amounts of technology to keep people alive during their last weeks on Earth. We cannot, however, ever win. Death always wins. And that perhaps is the only truth in all of this.

Doctors are hypocritical too. Please don't misinterpret my words. I am no model. I am no expert. I, too, am scared shitless of my own death-- and don't even get me started thinking about my mom's or my son's death. I won't sleep tonight.  It is NOT easy to talk about death-- even when my graceful and brilliant 85-year-old patient, trained psyschologist says matter of factly to me, "How can I die gracefully." I, too, squirm. I hem. I haw. I WANT to be able to have as much grace and perspective as my patient, to guide her majestically into the netherworld. I think I'm generally pretty suave in uncomfortable situations-- I thrive on difficult conversations and want to be good at this. But, to be perfectly honest, I'm not. As many of my colleagues are not. For lack of training. For lack of cultural exposure. For lack of tools.

And so, I bumble along, doing my best to do my best in that moment with that patient-- be it in my office or at the bedside in the hospital.

And despite death's definiteness, we systematically avoid it, even as we sit before the oncologist facing our own mortality, even as our own parents face serious and grave illness. We act as though we will escape, we fail to fill out a living will or an advanced directive or a medical power of attorney.

Chances are, when you finish reading this, you'll do none of the above. Fine. Fine with me. But do this one thing-- for yourself. Call or email or take the person out to dinner who you think would be the BEST person in your life to make decisions if and when some complicated time come. It may be your first born or your neighbor, heck, it could even be your mailman. Sit with them, designate them, and give them some background, so if you find yourself unconscious in the hospital or ventilated in the ICU or even just sitting in front of the oncologist with a new diagnosis, you know that person will represent YOUR best wishes, be your advocate.

For death will come to all of us and it sure is nice to have some company on the way out.


Additional references:
http://deathoverdinner.org
http://www.nytimes.com/2013/11/20/your-money/how-doctors-die.html?hpw&rref=health&_r=0
http://www.agingwithdignity.org/forms/5wishes.pdf
http://capolst.org/
https://www.youtube.com/watch?v=pX1csOAu1IM
http://www.npr.org/programs/death/readings/stories/ebwhite.html