Consider the Source: A new voice for maternity care reform, J.D. Kleinke
I get a particular kind of delight when I learn about someone who is willing to speak out about U.S. maternity care and yet isn’t the typical stakeholder. You might know the type I’m talking about: not a midwife or a doctor or an activist for any agenda, not someone who was harmed or transformed by their birth, not a spokesperson for a particular agency or professional society – just someone willing to look at our system, intelligently analyze its shortcomings, and be bold about how we could transform it into a system that reliably delivers humane, high-quality care.
A few months ago, I was introduced to J.D. Kleinke. It didn’t take me much time on Google to figure out that J.D. is exactly this kind of non-stakeholder. Turns out he’s a non-stakeholder with tremendous insight and influence. A health economist and health IT pioneer, he’s well known in health care reform and technology circles. He’s also an accomplished and prolific writer, with two health economics text books and articles in just about every major health care publication under his belt. But none of those publications has taken on maternity care specifically – until now. And instead of writing a health economics text, he’s delivered a drama-packed, beautifully crafted novel, Catching Babies, published this month by Fourth Chapter Books. (Disclosure: I received a complimentary review copy.) I know the readers of this blog will be interested in the book. Even more so, I think you’ll be eager to hear more from this new voice for maternity care system reform.
Fortunately, there are plenty of opportunities to do so. J.D. will be making the rounds on the blogs this week – visiting The Unnecesarean, Birthing Beautiful Ideas, Birth Sense, and Mom’s Tinfoil Hat to discuss the themes in his book and the lessons it holds for “real life”. And next week, J.D. and I will be tackling the issues on stage together at the Health 2.0 conference. Watch for tweets, blogs and videos coming out of that meeting.
Let’s kick things off with an interview.
Amy Romano: J.D., in the author’s note at the beginning of Catching Babies, you say that you set out to write a non-fiction collection of case studies addressing conflicts and controversies in the field of women’s health. Instead, you ended up writing a novel about the personal and professional drama of a cadre of ob-gyn residents near the end of their training. How did this process unfold?
J.D. Kleinke: I was living among a group of OB/GYNs as they were going through their residency, right when the non-fiction rudiments of Catching Babies were coming together in my mind. As with many residents in any specialty, they would talk incessantly about their workloads, especially about their weirder cases. As they did, I could not help but notice that the most dramatic and interesting elements of each story were not the specific clinical details, but the emotional reactions of the physicians themselves. Fascination, revulsion, contempt, pathos, cynicism, wonder, ridicule, dread. The wide variety and raw intensity of their responses to what they were dealing with in the hospital every day were often counter-intuitive, sometimes shocking to me, and I noticed how these reactions started to pattern around the personalities and family histories of the physicians themselves. Some OBs tended to respond to the most emotionally difficult cases with fascination and compassion, others with a cynicism or blitheness that bordered on cruelty. After enough watching and listening, I started to notice a strange binomial distribution among the ones I knew most personally: one group were deeply empathic people making enormous sacrifices – they were what we would call heroes and, in a couple cases, martyrs. Another group were cold, mean, vindictive, really nasty – the sort of people who were plenty smart and technically capable – but I wouldn’t want them delivering my dog’s puppies. Oddest of all, there was no middle ground. This is the exact opposite of the bell curve of personality and temperament you tend to find within almost all other groups of professionals, including most other medical, if not surgical, specialties. And people who tend toward the extremes of heroism and callowness make for good drama!
Amy: Your novel begins during the main characters’ final year of residency and ends after they’ve all dispersed into private practice, fellowships, and other post-residency adventures. Why did you choose this particular time frame for your story?
J.D.: Great question. This precise year is the key inflection point in the life of any physician. It’s the moment of truth for everyone leaving years of school and facing their options out there in the big bad world. You’ve been studying, training, amassing debt, living on subsistence wages, and solidifying your ideals for 12 or more years – and now it’s go-time. And your competing choices are hugely different. Are you going to try to cash in as big as you can? Hunker down and try to advance the field? Try to take your already rarefied skills to the next level? Teach? Agitate? Or are you going to endure still another round of academic medicine to help the poor and desperate patients who stream without end into your teaching hospital? This is also the inflection point for doctors personally. Many have been postponing marriage, their own pregnancies, homeownership – in short, all the hallmarks of “growing up” – well into their 30s. And most of the OB/GYNs I’ve observed personally were hellbent on playing catch-up, often making terrible decisions and compromises in the process. This is also ripe for great drama: smart people with some of the most profoundly adult responsibilities in society who are, in a way, still arrested adolescents, thanks to 12 or more years of intense schooling and training.
Amy: One of your characters is an ob-gyn who wants to collaborate with home birth midwives to better integrate care during transfers. Just last month, ACOG released a new Committee Opinion that urges the development of integrated systems to optimize home birth outcomes. What do you see as the major opportunities or barriers when it comes to realizing the vision of integrated systems of care across birth settings?
J.D.: Let the record show – I thought of it first and I have drafts from Catching Babies going back to 2003 to prove it! Actually, it’s an idea whose time has been a long time coming. There is a groundswell of demand among American women to deliver at home – thanks in part to the hair-trigger interventions and often brutalizing processes I portray in Catching Babies – but thanks also to the same ethos emerging around the country regarding green energy, vegetarianism, organic food, recycling, local food sourcing, and generally trying to live a less toxic, less industrialized life – an enormous collective backlash against the technocratization of society. There is a growing number of women who believe that the traditional maternity care system has pathologized childbirth, and they want no part of it. Right or wrong, this is what they believe. There is, therefore, not just an opportunity, but an enormous responsibility for all of us to find ways to cope with their flight to homebirths, because homebirths are going to happen whether we like it or not. The barriers of course are enormous: medical, organizational, financial, legal, even criminal in some situations. Why? Because all elements of what is essentially not a health care system, but is really an “illness care system,” are elemental to the system for profound reasons, most of them ultimately economic. And they will not go away without an especially good fight because, in the home birth setting, the simple fact of the matter is that babies will die – a small number of babies who would not otherwise die had they been delivered in the hospitals, a few feet away from ventilators and the NICU. These cases are of course extreme outliers, as are those babies who die during delivery in the hospital. But we have a better safe than sorry system and culture, and that’s why homebirth will always be fighting a steep uphill battle. I am also just as aware of the thousands of other suboptimal birth outcomes of babies who are rushed through to delivery in the hospital who would have been just fine delivering at home. Unfortunately, the loudest sirens in our society – the lawyers, reporters, and politicians – don’t trade in population statistics, they don’t acknowledge trade-offs. They focus on the outlier, the tragedy of that one dead baby delivered at home – and probably would have died from the same problem in a hospital setting. But still, they focus on the reckless midwife, the random disaster that couldn’t have been prevented anyway. The biggest barrier to homebirth is the difficulty recognizing that the collective outcomes profile for homebirth – delivery complications, infection rates, rates of postpartum depression – is definitely different, and perhaps better for the population as a whole, but it will include an occasional travesty that a hospital setting may have avoided. Would the homebirth family have consented that? Will they honor their waiver of their right to sue? Doesn’t matter. There will always be an ambitious reporter, grandstanding local politician, or gutter-crawling attorney ready to re-write everyone’s intentions, and all the facts, when tragedy strikes.
Amy: You have been called “an advocate for a smarter, data-driven, post-partisan health care system.” What might this look like in the context of maternity care?
J.D.: Smarter and data-driven is easy, or at least easier than the “post-partisan” part! As applied to maternity care, a smarter, data-driven system would be fully armed from end-to-end with good clinical decision support systems specific to pregnancy, labor, delivery, and post-partum care. These systems would mobilize accurate, clinically detailed, risk-adjusted normative data about what works and doesn’t work for a very specific type of pregnancy – actually beginning with pre-pregnancy fertility, genomic and family data – and they would be parsable and analyzable up against accurate, clinically detailed, granular data about the pregnancy at hand. Hard as all that sounds to create and implement, we have now have systems like it in the ICU and for several medical specialties. Why not for maternity care? The “post-partisan” part – well, that is actually harder to imagine – because it would run headlong into much bigger problems than health care system problems. Look no further than the mindless screaming about birth control, abortion, gay marriage, or stem cell research, and you’ll realize that maternity care will never be free from the intrusions of partisan politics. This is actually one of the reasons I find the subject so interesting, and one of the reasons I wrote Catching Babies. Women’s health stands at ground zero for the entrenched ideology, zealotry, fear, and unconscious loathing of women’s sexuality that so clearly enrages many of America’s politicians and preachers. It is what drives people who otherwise claim to be “anti-Big Government” into all of our bedrooms, our marriages, and women’s health clinics, and they are not going to be off minding their own business any time soon.
Amy: Let’s close our eyes and imagine a time in the (hopefully not too distant) future when we can declare that the U.S. has achieved the 2020 Vision for a High Quality, High Value Maternity Care System. What was most critical to our success? What role did childbearing women themselves play in the transformation?
J.D.: I’m only a novelist – I don’t know if my imagination is that good! Everything that stands between us and that vision are precisely the same things standing between the rest of the American health care mess and a truly reformed, functional system. Maternity care is American health care in miniature, and fixing one on the most fundamental level is as hard as fixing the other. I suppose this is because, ultimately, the problems shared by the two are exactly the same. With childbirth, its just that much more maddening, because pregancy is not a disease, and yet the illness care system presumes that it is, and treats it like it is, and lo and behold, we end up with bad birth outcomes, many of which stem from nothing more than this erroneous orientation. That orientation is wrong in and of itself, whether it’s heart disease, mental illness, or maternity care, but that’s how the non-system was non-designed decades ago, when hospitals were places you went to die, not get better. Consistent with that tradition, our reimbursement is all wrong: providers are paid for more interventions, not better outcomes. And except in a few closed systems like Kaiser or Intermountain – and for only limited periods of time – we have no access to useful patient information, so many birth providers are either going on what the patient was able to report, or they are flying completely blind. What else? The tort system is a disaster and regardless of its actual direct impact, the perception of the size of this impact is caustic, divisive and counterproductive. And the evidence base for some of the most important things in maternity care is not great, and even where the evidence is great, findings are poorly disseminated or ignored. Certain practices are followed by birth providers for years – like the immediate cutting of the umbilical cord postpartum – when common sense and research has shown that delayed cutting is much better for the baby. Nonetheless, providers still do what they always did – because that’s how they always did it. The best ways to realize the vision you’re asking about is to stop treating maternity care – all medical care actually – like a folk art, arm all providers with better information, measure what they do, and radically realign the payment system to reflect those measurements. All else will fall into place. And to answer your last question, the single best way to make all that happen is to arm pregnant women with the same information. This is 2011 – we have the Internet now – no more excuses for paternalistic decision-making on behalf of passive patients. Patients should be encouraged to research and understand their bodies, pregnancies, birth choices, and intervention decision points – without interference, biases, or pressure from providers. Which brings us back to the home birth issue. This is a grassroots rebellion by women who are seeking to take back precisely this kind of control. Maybe they have over-corrected, if only because they felt so little control inside the traditional system, but their actions speak louder about maternity care in America than I ever could!