In the world of healthcare, and certainly in the world of maternal-child health care, there is a lot of intimidation that many consumers experience. Again, I don't mean to imply that all or even most health care providers intentionally intimidate or that they are intentionally manipulative. However, this phenomenon occurs whether it is perceived by the consumer, or it is in fact true. A familiar tune I hear in casual conversation with women (and some of their mates) was that their provider told them such and such conclusions about "the research." When these couples mentioned said conclusions to others (another provider, educator, friend or what have you), the others told them, "well that's not what the research actually says." Alternately, the couple hears a particular recommendation from a friend/educator/health care worker and mentions it to their health care provider (HCP). This provider then tells the couple that no, that recommendation is based on faulty information, and such and such it what I recommend. When it comes to conflicting statements, who are these consumers more likely to believe? Their friend who has "only read" about these topics, their birth or other educator who may not be a health care professional or the "expert" who has 12 years of schooling and 15 years of experience under his/her belt? There are many conclusions drawn about research studies, many many conclusions. The researchers themselves draw their own conclusions based on their observations. The professionals who are reading the research journals draw their own conclusions, and then impart their interpretation to their patients. Sometimes, it can be reminiscent of a game of telephone. Not to suggest that providers are intentionally twisting the original study conclusions, but sometimes things get lost in translation, particularly when the concepts are oversimplified. Additionally, patients hear things through the filters of their own perspective.
One couple saw the OBGyn on call during a routine prenatal appointment. This OB mentioned the baby was in a breech (buttocks down) position which was revealed in the ultrasound performed just prior to the appointment. The provider then went on to say very causally that "a few years ago a study was done on vaginally born breech babies and found that it was very risky for babies, so now no one does it anymore. If the baby doesn't turn by the time 37 or so weeks come along, we're looking at a c-section (paraphrase)." Firstly, this is a tremendous oversimplification and narrow interpretation of the overall research results. The study, done in 2000 by Hannah et al (= 'and others') [full text of the original article may be found here], which is commonly referenced by those opposing all forms of vaginal breech birth, found that planned cesarean delivery for breech presentation had significantly better outcomes than did planned vaginal birth for breech. However, the study had several key flaws. The population that was selected for evaluation of vaginal breech birth included infants who were in the unfavorable footling breech presentation (which inherently can have a greater risk for umbilical cord compression), infants who had known fetal abnormalities and/or had fetal demise prior to enrollment in the study. These contaminated the inclusion and exclusion criteria (see definition: Clinical Trials.gov: Inclusion/Exclusion Criteria), which therefore skewed the final study results. Another factor that distorted the study findings was that approximately 19 % (10 babies) of the 51 fatal cases in the vaginal breech group were reported to have been attended by providers with "no" experience with vaginal breech deliveries. (For an excellent critique on this study, see
time for the baby to turn on his own (many healthy babies are still
breech around the 30 week period). Incidentally, this expectant mother had recently been reading about the vaginal vs cesarean breech birth research topic and knew that his conclusion was incorrect according to the overarching body of research. Still, being a first time expectant mother and a "good patient,' she wasn't confident enough in her own knowledge and articulation to debate the topic with the "expert." The woman was herself a HCP who was very used to interacting with other HCP's and skilled in her clinical knowledge. But even this did not remove the intimidation that often hovers in a "patient-doctor" relationship. This provider took a single study (which was significantly flawed) and used it as a weapon to tell the woman in this case that "a cesarean was the only option if baby's position was unchanged." The average person going to their HCP wouldn't even know that the stance this OB took was not truly research based. Two concepts were working in this situation: 1) he was a medical expert and 2) he (very loosely) referenced ''research.'' How do you argue with that if you don't know any better?
Another example I heard about just yesterday was a breastfeeding mother who was discussing immunity with her baby's pediatrician. The mother made a statement about her baby receiving passive immunity from her breast milk, thus helping to provide protection from illnesses (Passive immunity is obtained naturally as a result of the transfer of antibodies, in this case from mother to infant, and is relatively short acting, weeks to months. It differs from active immunity which an individual's body produces for himself.) The pediatrician informed her that passive immunity via breast milk was "a myth." Strong statement. In fact, in addition to many similar antibodies, sIgA, a bactericidal (bacteria-killing) antibody has been identified as one of the most abundant in breast milk. There are also dozens of other compounds that contribute to the immune enhancing properties present in breast milk (please see this article for further definitions: Human Milk and Lactation, Carol Wagner, MD). One would hope that an experienced pediatrician who is worth his title is not ignorant of very extensively researched topic surrounding the passive immune properties of breast milk. Another explanation for this kind of statement about the "myth" of passive immunity was that this provider perhaps was attempting to get this mother to agree to the intervention he was pushing (immunizations). Rather than providing accurate research to present his case and allowing the mother to make a decision based on that research, this provider took a fairly defensive approach. By using the term "myth" this pediatrician came across to the mother as quite demeaning. Simply speaking, the provider was either ill-informed or manipulative (not in a sinister, but rather desperate sense). Neither one gives a parent much confidence in his/her HCP. These two examples demonstrate a general attitude that is common with some providers: my opinion=the facts/"science"/research. In other words, they see their personal perspective (which is highly influenced by mentors, clinical experience during school, colleagues' experience and their own professional experience) as from research-based findings and facts.
At times, providers place their patients' decisions on their own shoulders (this is understandable given how litigation-obsessed health care consumers tend to be, particularly in obstetrics). Providers can get very personally or emotionally or perhaps fearfully involved in the decisions their clients make, forgetting whose decision it really is. Some fear that if the patient does not make the decision that they (the providers) are recommending (which they usually make in good faith), the patient and/or perhaps child will suffer damages. These damages would not only be on the conscience of the provider (whether rationally or not thinking he could have prevented the damage), but also leave him vulnerable to being sued by dissatisfied clients who are looking for somewhere to hang the blame. Certainly, if there is neglect or malfeasance, a provider should be held accountable. But no one should chastise a well-intentioned provider for not wanting to be sued (more on this in a future entry). This along with many other factors sometimes leads providers to use "the research" or their "expert" opinion as a weapon, rather than the service it is supposed to be. Meanwhile, the people who suffer most from this kind of paternalism are the families. And on the thread of fear, why are we so afraid to just let the facts speak for themselves? Why do we feel the need to pressure others, throw our credentials and experience around or embellish the facts just to get someone to make the choice we want them to make? A consumer may make a poor choice even after hearing the truly research-based facts, but it is still their choice. It is always their choice. Let's let the research speak for itself.
Families need to be educated, encouraged and supported to formulate their own opinion, their own philosophy and to make their own decisions. This is not paternalism. I am not speaking of indoctrination, rather empowering families by teaching them how to teach themselves. I believe if families want the best possible outcomes, they must take responsibility for their education and learn to decipher research themselves. This is not advocating that families distrust their providers. Rather, it is encouraging us to get away from blind dependency on the "experts" and shift to a confident, collaborative relationships between clients-providers. The more that families take responsibility for their health and health education and the less that providers promise the world and stifle their patient's self learning, the less fear, manipulation, distrust, paternalism and litigation we will see. Correspondingly, more collaboration, confidence, responsibility and better patient outcomes will follow. But it MUST begin with the consumer--i.e. the patients. If consumers are lazy and unwilling to educate themselves and check the facts and instead dump their woes and needs on providers, the results will be at best suboptimal and at worst, devastating. Providers will be unfairly responsible for other people's poor choices and families will suffer loss. Support and nurture young families. Teach others to teach themselves.