Conformed Consent

One of the most frustrating things for doulas and childbirth educators is that our clients are rarely given true informed consent when it comes to healthcare decisions for moms or newborns. As a childbirth educator, I talk about it in class all the time - telling my students they deserve informed consent in pregnancy and birth and have a right to expect it from their healthcare teams.

But what does informed consent mean in most hospital obstetrics settings in Kansas City? Very little, actually. More often than not, doctors and nurses tell my doula clients that a procedure (such as an epidural, amniotomy, or even vaginal exam) is risk-free, when the preponderance of evidence tells us otherwise. Women are given consent forms to sign before receiving epidural anesthesia, but rarely do moms take the time to read the lengthy forms and understand all of the epidural's risks. And other procedures, considered part of the normal obstetrics package, don't require separate consent and the information consent forms provide.

As a childbirth educator and doula, I tend to view informed consent from the parents' perspective. But healthcare providers traditionally aren't thinking of their patients when they think of informed consent; the value to them is that informed consent should provide legal protection if something goes wrong. But are hospitals and physicians truly protected if patients aren't informed?

Glenn McGee, editor-in-chief of the American Journal of Bioethics,  was quoted today in the American Medical News on the subject: "... the problem in informed consent right now is that it is the most impersonalized medicine there is ... Everything that could be wrong with informed consent is wrong."


McGee is absolutely right. 

So I'll be carefully watching the PREDICT program, the initiative McGee discussed with American Medical News. PREDICT, which provides an informed consent protocol to which doctors and hospitals can conform, is testing the effectiveness of true informed consent in non-emergent cardiac procedures. The program, which was developed at St Luke's Hospital in Kansas City (one of my two favorite natural childbirth hospitals in the area), is spreading to pilot hospitals across the US.  Under this paradigm, doctors will draw on a national database to individualize risk factors for each patient. Informed consent discussions will go beyond "1 in 200,000 patients risk this side affect" to "Your chance of suffering this side affect is (X) percent," to the degree that information is available.

PREDICT's kind of informed consent will truly allow patients (or at least, those who want to know) to make quality decisions about their health care. Patients who have an active role in the decision-making process have better long-term outcomes, studies suggest.  (For an interesting look at the long-term benefits of being involved in healthcare decisions, look at Journalist Thomas Goetz' book The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine).

Bioethicist McGee predicts this paradigm will rapidly shift to other areas of medicine. I'm hoping he's right. Hospitals and physicians need to conform to expanded informed consent rationale - training doctors and nurses in the art of educating patients, and ultimately putting the patient's best interests above the fear of getting sued.

A Blue Band-Aid

A few days ago, I was cleaning out an old wallet and stumbled across a band-aid, its wrapper folded and faded. It easily could have ended up in the trash with the rest of the detritus stuffed into the billfold's pockets - mostly things saved that shouldn't have been: receipts, unlabeled ticket stubs, an old piece of hard candy. All junk, to be disposed of without a second thought.

But the band-aid is something I'll continue to save. Though momentarily forgotten, left behind when I stopped using that particular wallet, it's not something I'm willing to part with. Looking at that bandage, blue beneath the crumpled wrapper, brings to mind a simple kindness that I still hold close.

Five years ago, while visiting family in Colorado, my four-year-old son fell and cut his knee. He refused to be consoled until I could clean and bandage his cut, but we couldn't leave the park because I was the responsible adult for his cousins, who were in the middle of tennis lessons a few yards away. Next to the tennis courts was a rec. center, and the closest door led into the pool area. Surely a lifeguard or someone inside would have a first-aid kit, I thought, so we opened the door and paused just inside to look for help, my son still shaking and crying.

I tried to catch the eye of a lifeguard, but he clearly wasn't interested in finding out whether I needed something, glancing away before giving us a thought. I looked around the pool area, hoping to see an office or someone else I could approach to ask for a bandage, but nothing looked promising. Just then, I heard a voice from just inside the door. A young man, probably with Down syndrome, had noticed my son's distress and come up out of the hot tub to ask what was the matter.

I told him what had happened and that we were trying to find someone who might be able to help us. The man, whose name I didn't ask, told me he could find a band-aid for us and took off across the tile floor. We followed, grateful, thinking he was leading us to an office of some kind. I had to stop abruptly, though, when I realized he was headed into the men's locker room.

He returned in a minute, carrying two wrapped blue bandages, each the right size for a cut on the knee. He handed them to me, then bent down to tell my son that it was going to be OK. He watched while I bandaged the cut, and shook his head when I tried to return the unused bandage to him. "He might need that one sometime," he said, and then walked back to the hot tub while I called out my thanks. I thought about his parents, who had so obviously raised him well, and silently thanked them, too.

As parents, we all hope out children will grow up to be as kind as that young man was; we try to instill respect and empathy in our children. Sometimes we don't know how, but we try to be the best parents we can be. When I was pregnant with my son, I thought one aspect of good parenthood was to be prepared for anything my newborn baby might need. So I let my doctor talk me into genetic testing to screen for birth defects because, at age 36, I was of "advanced maternal age."

The test, an amniocentesis, is an invasive procedure (think long fat needle through mom's belly, through the uterine muscle and into the amniotic sac) that harvests amniotic fluid for DNA testing. Amniocentesis is potentially dangerous (it can cause miscarriage), horribly painful for mom (visualize that long fat needle) and, in my case, the worst decision I've made in the name of parenthood.  The test results were great - no detectable birth defects - but I knew before the tests came back that I had been foolish in risking a miscarriage to find that out. I realized that I could have easily found the resources I needed if my son were born with Down syndrome or another genetic variation of "normal." Nothing shown on an amniocentesis report would have changed how much I loved him, before or after birth.

Unfortunately, amniocentesis is used by some parents to determine whether they want to terminate a pregnancy.  Statistics show an estimated 80 percent of Down syndrome-affected fetuses are aborted because their parents don't want a baby who is less than perfect. Frank and Sue Buckley have written an excellent discussion of the testing/abortion issue that notes that the termination rate in Britain may be much higher.

I have no illusions that special needs children are easy to raise, but I do believe that being easy to parent doesn't make a child more lovable.  Likewise, I know that some people handle challenges differently, and that it isn't right for me to foist my wholesale beliefs off on others. Still, it makes me very sad to think of the numbers of parents each year who give up on their babies before really even meeting them, solely because they're imperfect. I can't imagine sorting through unborn babies like I sorted through that wallet, looking for things worth keeping and tossing out the rest.

To a bystander's eye, the lifeguard in that pool five years ago looked perfect...healthy and competent and presumably intelligent...but he was too flawed to catch the eye of the harried mom and her crying four-year-old.  How honored I am, then, to have been helped by the boy who was raised right - the one with compassion and kindness - the man with the blue band-aids.

The Survivor Tree

I'm sure today will an unmemorable one for me, as days go. It's a lovely spring day, sure - redbuds and lilacs in bloom -but it's one of thousands of lovely spring days I hope to live in my life.

It was a similarly lovely spring day 15 years ago today. I remember that because I had just come in from examining my newly tilled garden when the phone rang - my Kansas City Star colleague Cindy Lozano calling to tell me about the Oklahoma City Bombing.

For just two days, I'd been working as a state correspondent for the Star, based out of Springfield, Mo., and covering parts of  four states. While Cindy told me about the bombing and asked whether the state desk editors had called to send me to the scene, a dozen mundane thoughts ran through my head. I had moved to Springfield from Kansas City the week before, and though I had a bank account, I had less than $100 in it. I didn't yet have a refrigerator in my house, which was also my office, and I had a flat of strawberries sitting in the sink. My Mazda pickup was low on fuel. I hadn't unpacked all of my work clothes.

I called my editor, Caitlin Hendel, who told me the National Desk was getting a reporter and photographer on a plane to Oklahoma City and might need my help. By late morning, I'd drained my bank account, gassed up the truck and was headed southwest out of Springfield toward Oklahoma City.

The radio stations in Oklahoma were full of the news as I drove, although I remember little of those early reports. I stopped at an I-44 rest stop somewhere in northeastern Oklahoma, and I remember people clustered around TV screens hanging from the ceiling. A middle-aged woman in a blue shirt in the restroom told me she was praying for the victims.

I entered Oklahoma City from the east, and was stuck in a maddening, incredible, traffic jam. I don't know if I can trust my memory, but I remember columns of smoke in the skyline. The downtown exits were closed, so I overshot the downtown area and exited at the fairgrounds. I managed to snag a map at a service station and tried to quickly learn the layout of the city. I began a tour of the city's hospitals, where hundreds of wounded had been taken, while national desk reporter Scott Canon gathered what he could at the scene.

I spent weeks in Oklahoma City after the bombing, writing about the living and the dead. So many of those stories are right in my mind to grab when I want to, not that I often do. The story from that first night that sticks with me is one told by a physician to a cluster of reporters in a basement hallway of one of the hospitals. It is the tale of a woman whose leg was pinned under a beam at the bottom of the building. Rescue workers couldn't move the beam, which in some inconceivable way was helping to hold up what was left of the building. Dr. Andy Sullivan squeezed through the rubble to reach her, was able to give her a shot of sedative, and then amputated her leg with a pocket knife because the amputation knife was too large for the space he had to work. She survived, although as I remember, her family did not.

A lot has been written about the destruction that occurred that day -- more than 160 people dead, including children in the federal building's day care center. Hundreds of buildings were damaged, cars destroyed, downtown businesses irreparably lost. I spent some time in the city in later months, too, writing about the lingering effects of this act of domestic terrorism. I also was fortunate to reflect and write about the things and people that survived that day.


One of those is now known as the Survivor Tree, the lone shade tree in the Murrah Building's parking lot. The elm  was scarred by shrapnel and burned by the blast, but leafed out and lived on despite its injuries.

I had covered human tragedy for years before the bombing of the Alfred P. Murrah that April 19th. I had watched stabbing victims bleed out on the streets of Kansas City, seen the aftermath of shootings and beatings, explosions and fatal housefires ... death on a smaller scale, but death of a horribly palpable nature to the families of its victims. As well-prepared as I was to deal with the grieving families and shell-shocked workers in the wake of the bombing, I was deeply affected by the pain of the survivors. I walked away from those weeks in Oklahoma a stranger to myself.

Sometimes I feel a lot like that surviving elm ... worse for the wear of some of the things I've experienced. But some of the changes I experienced as a result of the bombing were good ones. I left Oklahoma City a better reporter and a better person - more compassionate, perhaps, but certainly more appreciative of the moments we live and they way our lives touch the lives of others.

Today, I'd love to know that people around the world are thinking of Oklahoma City, are still praying for the victims and their families that had to go on living. Though time has past, survivors are still pulled back to that lovely spring morning 15 years ago and experience moments of sheer fear and pain.  I hope some of them find solace each spring in the unfurling leaves of that lone elm.

Of Viruses, Big Babies and Ultrasound...

March was a wacky month - filled with viruses (computer and human) that slowed down my progress here and elsewhere. I've had dozens of things I'd like to write about, but not the energy nor a computer that could keep up with a little word processing.

I'm grateful to finally be recovered - just a little cough for me, a little hiccup here and there for the computer (but I blame Microsoft for that). Now if I could just figure out what's happening with my cell phone...

There are untold adages about how things happen in sets (or groups of sets), and any one of them would fit the last few weeks for me. In particular, it's been a month of "big" babies. Two of my students gave birth to girls who weighed more than eight pounds -- a hearty congratulations to both families on their wonderful new daughters! -- and two clients are currently wrestling with their physicians over inducing their babies early because of estimated weight.

In my years as a childbirth instructor and doula, I've worked with a number of moms who've given birth to babies larger than nine pounds...often without a perineal tear. I've been there for the rare occasion when a baby could only be born by c-section, but I've seen many, many more moms give birth to big babies with no complications, no anesthesia and no undue stress.

So it disturbs me to see more doctors trying to convince women to induce because they think the baby might be large. In the vast majority of situations, a mom allowed to labor the way her body needs to -- even if the resulting labor is longer than average -- can give birth to her baby without surgery. Even if the birth results in a c-section, the benefits to the baby of going through a trial of labor are substantial. Labor massages the baby's organs, resulting in a baby who's better able to breathe and otherwise function after birth.

Physicians are scheduling more ultrasounds late in pregnancy, which allows them to use the "the baby's too big!" argument to justify induction. Late-pregnancy ultrasounds are often less-than-accurate at determining the baby's size or gestational age (in which late-term ultrasounds may be off by as much as 21 days).

In 2006, a group of London researchers looked at this issue -- performing ultrasounds to estimate the weights of 262 babies immediately before labor was induced. Using two common formulas for measuring, they found that ultrasound estimates were off by more than 10 percent in 38-58 percent of cases. Ultimately, doctors were more accurate guessing baby's weight than using ultrasound to try to determine it, the study concluded.* Moms were more accurate in some cases at guesses their own baby's weight than one of the two ultrasound formulas tested. "All four (estimates) were significantly different from birth weight," the study concluded.

Some doctors tell women they need to induce early or schedule an early c-section because a big (or macrosomic) baby could be damaged by the birth process. However, it seems that these procedures aren't making a difference in the health of babies or moms.

In a 2005 article in the American Journal of Obstetrics and Gynecology**, authors note: "Among uncomplicated pregnancies, there is sufficient evidence that suspected macrosomia is not an indication for induction or for primary cesarean delivery."

As much as the labor process benefits babies, waiting to be born until the baby is ready is of a huge health benefit to the baby as well. The March of Dimes is currently campaigning to educate physicians about the differences in the brain of a baby born before 40 weeks and that of a baby born at 40 weeks or after. The differences are significant, the organization reports. For example, the baby's brain at 35 weeks is only two-thirds the size of a 40-week brain. Babies born early have poor feeding reflexes and are more likely to suffer learning and behavioral problems, according to the March of Dimes.

I often wonder marvel at the disconnect that seems to exist between those doctors who birth the baby (Yes, I know, it's the mom who births the baby, not the doctor!) and those who take care of it once it's born. It seems unlikely that doctors would push so hard to induce babies if they thought about the lingering effects for children and parents.




* Original Paper
Clinical and ultrasound estimation of birth weight prior to induction of labor at term
E. Peregrine, P. O'Brien, E. Jauniaux
Department of Obstetrics and Gynaecology, University College London Hospitals, London, UK


** American Journal of Obstetrics and Gynecology, 2005 Aug;193(2):332-46.
Suspicion and treatment of the macrosomic fetus: a review.
Chauhan SP, Grobman WA, Gherman RA, Chauhan VB, Chang G, Magann EF, Hendrix NW.
Spartanburg Regional Medical Center, Spartanburg, SC, USA.

Sunshine, Crocuses and Haiti

It's been an unusually rough winter in the central plains...only eight or nine days without snow on the ground since the official start of the season. But today is the kind of day to make me forget most of that. The sun is here with seeming vengeance to drive away the snow, and species crocuses are blooming, flashes of purple and yellow against the brown landscape.

Last fall, I planted three colors of crocuses on my father's grave in Hutchinson, KS., and a sister bunch beneath a redbud tree in Kansas City. I've been watching those under the redbud in particular this year, knowing that when the crocuses here are nearly ready those in Hutch will be in full bloom. It's a way to think of my father, who died 14 months ago, with less grief and more joy.

Even without flowering crocus, I've been thinking a lot about Ted (as I not-so-respectfully liked to call my dad) the last month or so. It is, strangely enough, the earthquake in Haiti that brings him to mind.

Ted was a conservative -- as is my mom -- which often surprises acquaintances who know that I am a liberal moderate (or moderate liberal...is there really a difference?) Through the years, friends who listened to the somewhat-good-natured political banter at our dinner table would ask how I grew up to be liberal in that house of conservatives. I always answered that question with some version of this story:

When I was 11, not much older than my son is now, my parents took my sisters, my grandmother and me on a Caribbean cruise. Several things about that trip stick with me -- the rock parapets of San Juan, the astoundingly azure waters around Curacao, the packed streets of Caracas. But it's the images of Port-au-Prince, Haiti, that remain the most vivid.

Ted, whose outlook was shaped by growing up on a small depression-era farm, worked extremely hard to build a successful business as a young man. One of his few indulgences was traveling, and he refused to let any of us take the privilege for granted. To see a new city, country or continent wasn't about relaxation or status for Ted, it was about learning and trying to understand people whose world view differed from your own. He encouraged us to learn about the places we visited through any number of methods.

At some point on the cruise, Ted pointed me toward an onboard discussion of what to expect when we arrived in Port-au-Prince, (though he somehow failed to attend himself). The speaker talked briefly about Haitian poverty. He told us to look at the hills above the port at night to see the blazing cookfires of those "squatters" who lived on the hillsides in shelters made of cardboard, salvaged sheet metal and any other material they could find. I'd never heard the word squatter; it meant nothing to me. But I remembered it.

The day included a harried taxi ride through the streets of Port-au-Prince (in which our taxi ran into another), as well as a visit to a street market (where I bought a traditional madras hat, confusingly lined with newspaper). At dusk, my grandmother, Ted and I stood by the deck rail overlooking the city while the ship pulled away from port. Ted, who was like Monet when it came to the art of conversation, was too busy talking at first to notice that the hills framing the city were glowing red and orange.

"Those are the cooking fires of the squatters in the hills," I said, happy to show that I had learned something. I didn't expect the passionate lecture that followed.

"That's a horrible thing to say!" he told me. "Never assume because someone is poor that they're a squatter," he said, the harshness of the word clear in his tone. He continued for some time, admonishing me for looking down (he assumed) on those who didn't have the things I was fortunate to have. When he stopped and I could explain that the word came from the ship's cultural guide, not me, he calmed down.

It wasn't the last time I'd hear Ted lecture on the subject, but it was the only time the lecture was aimed specifically at me. I took his words to heart that night and it helped mold my global view. Ted would be amused, I'm sure, that I think of that instant as the jumping-off point for my liberal political philosophies.

That also wasn't the only time I'd hear Ted speak with such conviction about right and wrong or watch him talk emphatically about fairness and ethics and treating people with respect. He had no use for those who acted without a sense of responsibility to the world around them. He had particular disdain for those who were unethical in their professional dealings.

As I write this it dawns on me that I should thank Ted for giving me conviction to fight for change in the way our health care system treats families during pregnancy and birth. If more obstetricians shared Ted's sense of ethics, parents might not have to fight so hard for the right to make decisions on behalf of themselves and their babies...

Because they were planted just last fall, Ted's crocuses are just starting to grow while the others are blooming. Like great ideas that start small and grow in waves, the crocuses will spread with time, eventually filling the area under the redbud tree with purple and yellow blooms each year. They'll always remind me of my father, and now they'll also remind me of the importance of doing the right thing.

Bloom on, little crocus.

I Never Thought I'd Be Here

I never planned on being an advocate. My general belief is that right usually prevails...that when individuals fight for what they need and believe in (at least in the U.S.), they have an opportunity to make great things happen. Who needs an advocate when you can handle it yourself? It's simple, sure. But it's also often true.

But here I am, practically by accident, advocating for the common good on behalf of those who can't or won't. That's not a far leap, I suppose, for a former newspaper reporter. As a journalist, I believed in the public's right to know - that an informed public would use fairly presented information to rally for change when change was needed. Now I'm not so sure.

I find myself in this place not because my sense of righteousness is inherently wrong -- I still believe in informed individuals' abilities to make good things happen. But, I've learned that a majority of people often aren't informed -- they don't seem to understand (or maybe don't care) that they might need to fight for change. Too many of us don't know we have choices. We've become a society that often lives for the status quo... even when the status quo has stopped working.

I look around me and I see a need for change -- for improvement -- in many areas of American society. I don't have time or energy to be a scatter-shot advocate, so I've chosen to focus on a few things that I can affect on both personal and global levels.

Shortly after I left journalism to be with my newborn son, I realized that the vast majority of parents in the U.S. don't realize they probably need to be making informed choices in pregnancy and birth because those choices may affect the health of their families in the long term. Many parents don't understand that there are serious ramifications to not making choices, and leave the decision-making to health care providers who are often procedure-and-medication happy. By failing to ask questions -- by participating in the births of children in absentia -- parents are giving up their first opportunity to weigh in on the welfare of their children.

I became a childbirth educator and doula (someone who helps laboring parents through the birth process) so that I could help families understand those choices. I am happy knowing that my assistance has made things better for some parents and babies in a very concrete way -- surgeries avoided, wishes honored, babies healthy. But the number of families I personally can work with in a year is less than the number of babies born on a busy day in two or three of my city's busiest hospitals.

My individual call for change is part of a worldwide phenomenon, really. Around the world, women and their partners are standing up for the right of choice. I'm hoping that if I add one more loud voice to that ongoing discussion, we'll collectively force good changes in the status quo.

I'll use this space to talk about the research and share my thoughts, and in the process I hope that someone (including me!) will learn something. From time to time I'll talk about things that have nothing to do with pregnancy or birth -- and in some of those off-topic observations I'll still be advocating, but sometimes I'll just be making observations.

Ultimately, I wish there was no need for people like me to advocate for healthy options in pregnancy and birth or for parental informed consent. Do I really want to be here? No. But since the need exists, I can't imagine being anywhere else.