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

C-sections gone wild?

http://drjennifermercier.com/wordpress/wp-content/uploads/2013/07/babybirthc-section.jpg

Cesarean section refers to delivery of a baby through an abdominal incision. A cesarean section (often called a "c-section") can be a life-saving surgical intervention-- for moms and babies.  Sometimes it is absolutely necessary. In fact, studies in very poor countries show that increased maternal and child mortality directly correlates with poor access to urgent cesarean section.

However, here in the US, we have the very opposite problem:  rising c-section rates are associated with increasing maternal and neonatal mortality. And no one knows just how to stop cutting.

In 1988, US cesarean rates peaked (we thought) at 24.6% of all births. That's 1 in 4 babies! By 1996, largely thanks to public policy work and change in medical culture, the rate had dropped to 19.7%. The US government's  Healthy Families 2010 goal was to get that c-section rate down even further-- to 15.5%.  At the time, this seemed an attainable and health-wise goal. 

Unfortunately, c-section rates started increasing again, and despite policy work, by 2010 we came far short of our goal; the rate was up to 26% and rising. Today, our national cesarean rate is 33.1%. In Sonoma County, our cesarean section rate for hospital births is currently 26.3%, better than the national average, but still pretty darned high.

Did you catch that? Today 1 in 3 women in the US are birthing via c-section. There is a range across states, but it's not terribly wide (Utah has the lowest c-section rate  in the country, at 22%, Kentucky and New Jersey the highest at 38%). Perhaps most telling, our government's 2020 Healthy Families goal of 23.9% seems to be moving in the wrong direction!

The main indications in this country for cesarean section are:
1) Labor isn't progressing (i.e. woman isn't dilating as quickly as we would expect, hope, or imagine)

2) Abnormal fetal heart tracing (i.e. some concern that the baby might be in distress)

3) Fetal malpresentation (this includes breech babies, as well as babies who are occiput posterior in my land sometimes called, "sunny side up")

4) Multiple gestation (twin primary c-section rates have skyrocketed from 53% in 1995 to 75% in 2008, despite the fact that a study published in a super esteemed journal in 2013 reported no improved outcomes in c-section vs. vaginal birth for twins. Huh.)

5) Suspected macrosomia (i.e. big babies)




It's hard to determine exactly what the "correct" c-section rate should be-- WHO (the World Health Organization) has long advocated a maximum c-section rate  of 15%. A 2011 study confirmed that once a cesarean section rates tops somewhere between 10-15%, the benefit for women and babies wanes.
                                                                            ***

Source: Dieva Larissa Tattoo

One thing that most of us can agree on is that 33% is too high--- risks of c-sections including wound infections, blood clots, and other post-operative complications are on the rise. Here are ways that both birth professionals and birthing women should be advocating to change the way decisions are being made regarding c-sections

1) Be more patient: just this year, ACOG (the professional organization representing obstetricians and gynecologists) released recommendations offering women MORE time, and also not labeling a woman as being "in active labor" until she is 6cm dilated. That means a woman can be in labor for over 24 hours before we even start considering that "labor isn't progressing" and that gives women more time to have their own labor curve before we start counting.

2) Reconsider what abnormal fetal tracing is: this is super tricky, as the fetal tracing is what literally tells us "how the baby is doing"-- studies show that continuous monitoring has no better outcomes than intermittent monitoring (i.e. having that thing strapped on all the time while you are in labor vs. for 60 seconds every 15-30 minute) and yet, even in places that "say" they believe in intermittent monitoring, most laboring women are strapped up for large chunks of their labor

3) Make sure we are offering versions for women: a version is a procedure in which a physician literally pushes on a woman's belly in order to turn that baby from bum down to head down. It's usually done around 36 weeks, and though it isn't comfortable, success rates range from 1 in 3 to 1 in 2. That means a good number of women could be saved a section. There is also some interesting data on "moxubustion", an acupuncture/traditional Chinese medicine technique shown to help turn babies around. We should be doing everything we can do to get babies head down, including letting mom's rest!

4) Offer vaginal birth trial for women who have multiple gestation with Twin A in cephalic presentation (that's "baby closest to the vagina being head down", in doctor speak). It's unconscionable that 75% of those women are getting cut without being offered the possibility of a vaginal birth.

5) Be careful about the ultrasounds we order to evaluate neonatal weights. Remember, ultrasound in the end of pregnancy is pretty horrible at predicting weight-- plus or minus 2 pounds. Which basically means you could be having an 8 pound baby OR a 10 pound baby OR a 6 pound baby, on the same ultrasound report. We should be judicious about deciding we need to "check" on a baby's size unless we have some other really good indicators (like, for example, the woman has had two 11-pounders in the past). Sometimes it's tempting, but we shouldn't be tempted without good reason.

6) Lastly, we NEED to stop the FIRST c-section because we know that once a woman had a c-section her risk of having another one goes up. . .This is because an unhelpful combination of fear, hospital policies, and convenience.

Remember, doctors and families, talk about this stuff. It's important.

Also remember that c-section is an important and valuable tool in certain circumstances. Make sure you have a trusting relationship with your healthcare provider so that those decisions that are so important are done in the most shared-decision model way you can imagine.



Additional resources
http://www.ncbi.nlm.nih.gov/pubmed/24720614
http://www.huffingtonpost.com/2013/10/02/twin-birth-c-section_n_4030971.html
https://www.acog.org/Resources_And_Publications/Committee_Opinions/Committee_on_Obstetric_Practice/Prevention_of_Early-Onset_Group_B_Streptococcal_Disease_in_Newborns

Bad news

You know that feeling when your doctor says something like, "Please sit down, I have some bad news we need to discuss."

You know how your vision gets a little fuzzy, your ears feel this strange pressure with a humming vibrato in the background, your knees get shaky, and you want to vomit?

I know you know it.

You were already feeling pretty anxious driving in for the appointment. The waiting room didn't help. You jumped to the worse possible conclusion. It's bad, really bad. 

Receiving bad news is tremendously difficult. It's impossible to listen, even harder to understand.

Well, I have something to tell you.

It's no fun for the doctor either.

Granted, the implications are less personal, less life-altering. But needless to say,  I, your doctor, lay in bed awake last night at 3am thinking about you. Wondering how best to present the information in such a way that is listenable without being watered-down, in a manner that offers support and reassurance without being overly optimistic, in words that are honest without being hurtful.

Respectfully.

Understandably. 

Carefully.

Truthfully.

I hate being the bearer of bad news.

And I really want to get it right. But I don't always.

I don't want to tell you that your pregnancy isn't viable.
That you have diabetes.
That you need an operation.
I definitely don't want to be the one to tell you there might be something wrong with your beautiful baby.
That it may be serious. 
I hate telling you you have cancer.
Or that the cancer has spread.
Or come back.
I would rather not tell you that your heart isn't pumping like it should be.
That your toe needs to be amputated.
That your mind is going.

I tell you all this not because I want your sympathy-- after all, you are the one receiving the news. It's your body, your health, your illness. The journey will be yours to bear.

I just want you to know-- um, well-- I just want you to know that I care.

The Meaning of Ear Wax

Poor earwax.

Yes, this came out of my 3-year-old's ear.

He is forever being talked about, dug out, probed at, messed with, dripped on, picked at and judged.

We think he's dirty, crusty, gross.

We want him out.

Out of our own ears. Our partner's ears. Our kids' ears.

He is not a hero.
 
In fact, though we all have some amount of earwax, studies show that around 5% of adults, 10% of children, up to 57% of older patients in nursing homes, and 36% of patients with mental retardation complain of earwax problems. Of those, about 4% consult a primary care physician for help with dealing with their ear wax-- and that translates to millions and millions of visits to the doctor every year.

What is ear wax?
Our ear canal is a literal cul-de-sac.  On the normal highways, byways, and side streets of our skin (think face, arms, legs, even between your toes), the stratum corneum-- the outermost layer of our skin, composed mostly of flat dead cells filled with keratin-- slough off with physical erosion.

In other words, we run around, we shower, and we shed.

But the unfortunate reality about life in a cul-de-sac is that the dead cells have nowhere to go. No job to serve and not much to do but to just hang out.

Enter Captain Cerumen (aka earwax), that very villain you have been acculturated to abhor!

He is a hero!  (Well, sometimes).

This unlikely hero is specially designed to help us shed our ear canal's stratum corneum. He is a mixture of oily fats (like cholesterol), proteins, glandular secretions from hair cells and other types of technical "gunk".

There are two main types of ear wax: wet and dry. Wet wax, which is brown and sticky, has a higher concentration of fat and pigment. Dry wax, more grey-tan and brittle, has less fat. There are ethnic differences too: wet wax tends to be most frequent in Whites and African Americans, dry  in Asians and Native Americans. Kiddos tend to have wetter wax (easier to break up than adults)-- thank goodness for those of us trying to get that wax out!

In addition to helping abrade the canal, Captain Cerumen cleans and lubricates the ear canal. Some scientists have theorized that wax is actually antibacterial, though studies have shown lots of different types of bacteria growing in wax, so how effective it is in protecting us against bacterial and viral illness is controversial.


Earwax isn't inherently problematic
If earwax does it's various jobs, it isn't actually problematic. After all, we all have some! It's when earwax gets impacted (in other words, stuck deep inside the ear canal) that people complain of problems: itchiness, pain, hearing loss, ringing, dizziness.

How does earwax get impacted?
As in many things in life, genes play a big role; our behaviors can exacerbate the issue. The same can be said for dental cavities, weight, and even perfect skin. Some of us happen to be lucky to have big open ear canals and soft wet wax, just like some of us were born with teeth of steel, skinniness we couldn't fatten up if we wanted to, and smooth, unblemished faces.

You have poor grounds for bragging rights just because your ear canals are clean (and your partner's aren't). You are mostly just lucky!

In the case of impacted earwax:

• Some people just have biologically small or twisted ear canals (yes, blame your mother). 
• Some people just have dryer thicker, more keratinous (and less waxy) wax (this time, maybe, blame your father).
• Some people stuff the wax in their with cotton swabs (aka qtips)-- This is why the doctor is always telling you not to put qtips in your ear. Not only because you could bust your eardrum with one (you can, but that's rare), but more because you think you are pulling ear wax out, and mostly you are probably stuffing it in further, particularly if you have that dry thick stuff

People do all kinds of strange things to get rid of their earwax.
 Here are a few of my favorites:

Chinese ear picks: Cute and very commonly used, particularly by Asian mamas to dig their kiddos' earwax out; may be dangerous in the wrong hands, but plenty of (particularly Asian) mamas swear by them (and are pretty skilled at these little buggers). Here's another example.

Ear candling: A little weird, right? This method has lots of believers (something to do with creating negative pressure, vacuum, blah blah blah) without much data, studies show it's as effective as placebo and may be dangerous. Careful!

Q tips: I am the biggest hypocrite doctor on the planet, advising my patients not to use, but oh, qtips feel so good. . .it's hard to resist these useful little guys after a long hot shower

Hydrogen peroxide: This is my hubby's favorite. He loves the bubbling sound in his ear. . .







What actually works?

Doing nothing: Most people don't actually need to do anything to their earwax. Unless it's literally causing you problems (pain, itchiness, hearing problems, etc), leave it alone. Having earwax doesn't mean you are dirty or unhygienic. It's normal and healthy! And check this out: even for those who presented to the doctor with problematic earwax, a study showed complete resolution in 5% of patients and moderate resolution in 25% after a few days of doing absolutely nothing. Take home: if you procrastinate, it may just resolve itself. Our body is powerful!


But. . .for those of you who feel compelled to do something about your earwax, there are few studies actually comparing what works best.

Manual removal (i.e. scoop it out): Manual removal refers to literally having someone dig out your ear wax. It should be distinguished from home tools like q-tips and Chinese ear picks; safe manual removal should be done by someone who can visualize your eardrum (i.e. not yourself) and who actually knows what he/she is doing so as not to cause more problems. It also requires a "cooperative patient" (i.e. not a tantruming, squirming, screaming child). I do this with some frequency in my office (especially if I am trying to evaluate a child for an ear infection and cannot see his/her eardrum);  my son's pediatrician has done it for my son (for the same reasons), and otolaryngologists (ears nose and throat docs) are definitely qualified to do this, particularly for someone with a complex ear history. No one know if this is a better way than the others listed below, but it's quick, safe if done by someone who knows their anatomy, and usually not terribly uncomfortable. Also, it avoids the use of moisture, which may be associated with increase risk of infection in certain cases.

Ceruminolytics (i.e. soften it/break it up): "Cerumen", as you know, means wax, and "Lytic" means literally "break up". These cerumnolytics include all those products you see in the "ear section" at the drug store, including Debrox, Cerumal, and Earax, as well as home remedies like hydrogen peroxide, mineral oils and olive oils. Most ceruminolytics are thought to help make wax softer and, well, more waxy than it may be naturally.

There are three types: oil-based, water-based, and non-oil non-water based. There are a few small studies comparing different types, and most studies are pretty equivocal (in other words, they are all the same). Buy the cheaper one. Or the one you like the most. I have found that individuals (including myself) have super strong opinions about what actually works. Probably whichever type you use, the longer you use it (i.e. for several days in a row) is the most important factor in how successful you are.

Just a note: my favorite ceruminolytic is olive oil. It's cheap, easy, you already have some at home (or you better, because it's one of the best oils to be cooking with), it's has minimal side effects, and it works pretty well. Try it! Just a few drops (with a dropper or a small syringe) in each ear.

Irrigation (i.e. spray it out): Irrigation, also, should be done by someone with some experience. Though you can certainly try this at home, the tools we have in the office (fancy water bottles with specially designed tips) are probably more effective and safer. There are a variety of products on the market designed to limit trauma to the ear and maximize effectiveness. My medical assistant is a super professional with the ear irrigator and can clear almost anyone with enough time to hang in there with her. (I've been trying to get my husband to see her for years). It's considered effective and safe, though anyone with a known ruptured eardrum should stay away. One study found it worked alone 70% of the time. Irrigation should NOT be done in someone with ear tubes or with a questionable ruptured ear drum. It has been associated with a low risk of infection of the ear canal.

Ceruminolytics + irrigation: If irrigation works about 70% of the time, then irrigation after a course of ceruminolytics is thought to increase the probability of success to about 97%. Putting in some lytic about 15-30 minutes before irrigation has been shown to be more successful than doing it immediately and not any better than in the days leading up. So, I might suggest that at the start of your visit, ask the medical assistant to instill a ceruminolytic of your choosing. You can meet with your primary care provider for 15-20 minutes, and then finish up with an irrigation. Walk out of the office feeling like a new guy/gal. Voila!

                      
                                                       ***

In truth, people have an unbelievable attachment to their earwax. Or perhaps the proper term is detachment. They grant earwax a ton of negative attention and more meaning than it merits without appreciating it for its inherent utility. And everyone always want to talk about it (comes up in my office at least 3 or 4 times a day)!

Most of you should just LOVE your earwax-- after all, it serves a good purpose. Plus, there is no real point in having spick and span ear canals. Earwaxlessness=overrated.

Those of you with issues, though, consider something cheap and easy (e.g. olive oil) or go see your primary care provider and ask for a washout. The visit may also be a good opportunity to talk about your weight, your mood, or your blood pressure. While that ceruminolytic is soaking in. . .



Additional References:
http://www.aafp.org/afp/2007/0515/p1523.html

http://qjmed.oxfordjournals.org/content/97/8/477.long
http://udel.edu/~mcdonald/mythearwax.html
http://www.webmd.com/cold-and-flu/ear-infection/news/20080829/earwax-too-much-of-a-good-thing
http://www.ncbi.nlm.nih.gov/pubmed/14979962