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.