Communicating Accurately on Health Topics: Back to the Basics

Just a couple thoughts I've been pondering the last few days in relation to various health discussions and debates.

Before bringing a discussion to the table of health topics, I have confidence we could all agree that grasping key elements of information is imperative. Fundamental background information is essential to understanding and coherently discussing health issues--or any issue for that matter. For example, if we want to discuss the effects of mercury on the human body, we must first become familiar with mercury itself. We have to define our terminology. We need to ask several basic questions including things like: What is mercury? What forms exist? Where are they found? How are the existing forms different? How are they similar? Does mercury provide any essential functions in biology? How is mercury absorbed and excreted by the body? What are the levels at which each individual form can become toxic to human cells? Which humans cells?  How does age, body size, illness impact susceptibility to toxicity? By what means is toxicity determined? What are signs and symptoms toxicity for each individual form?, etc.

These types of questions are the basic tenants of scientific inquiry. There is nothing lofty about scientific inquiry. The students of scientific inquiry are intimately aware of the strengths and certainly limitations of the process itself. They do not worship the process, they see it for what it is--a tool, not the alpha and omega. One does not have to be a so-called expert to become familiar with fundamental definitions--accurate information is readily accessible in this modern era. Important details that affect the meaning are lost when we do not take the time to understand the foundations of our topics. The common result is many well-meaning, highly motivated people discussing issues that truly we do not understand, not in any way because we are incapable of understanding, but because we have not taken the time to teach ourselves the basics. Skipping the step of gathering background information can potentially lead to many erroneous conclusions because there is little to no contextual understanding. Taking out background information actually changes the meaning of the overall definitions. 

There is also an issue of discussions surrounding theory versus practice. The above questions on mercury largely surround theory though they also have clinical implications. Practice is different. What seems evident in theory may not play out the same way in practice. This is largely because humans are not predictable and no two people are exactly alike nor respond exactly the same to substances, interventions, etc. Though direct clinical experience (anecdotal) does not always lead a given professional to accurate conclusions or practices, if you want to know how things have played out in "real life" so to speak, ask those who have observed it first-hand. Whether or not we agree with the methods, conclusions or health philosophy of the individual professional, it should not discount that he or she still has direct experience, often experience that is entirely different from our own. It is easy for us to discuss issues as people who have read a lot about them. We feel we have fully informed ourselves of the how and why and why not, but until we can appreciate how these issues play out practically in real life, and interact with other factors, we truly don't understand.  For example, we can discuss the risks versus benefits of epidural anesthesia during labor based on clinical studies, conceptual and written information or from reports from friends or family. But risks versus benefits of epidural anesthesia is highly individual. Gathering information from other practitioners on their own observations can help give us another piece to the contextual puzzle. Not one of us knows everything about anything and we should share and gather information with others. Collecting, studying, summarizing and articulating and applying information has many steps and each step influences the next. 

My challenge: before we go into a discussion or debate surrounding health issues, or educate our neighbor on "the facts," we need to do our homework. The point here is not so that we fill our brain with mere facts, words and knowledge, but so that we can gain understanding. Knowledge and understanding do not go hand in hand. Understanding takes time, maturity, insight, pondering, quiet thinking, and so on. Anyone can hear and repeat knowledge, it doesn't make them wise or experienced. Sometimes we get lazy or we think if we say something loud enough and with enough force, it doesn't matter whether we actually understand it. Let us not miss important pieces to the puzzle simply because we don't think it matters. Background and context always matter.

DWetherill 2010

Evidence Based Research or Opinion?

             I have been mulling over a broad issue the last few days. Part of it stems from flipping through the news stations and listening in on so-called advisors, analysts and experts spout their perspective on the happenings around the world. I wondered why it was that I watched with so much frustration as I heard these individuals confuse the definitions of 'opinion' and 'fact.' The general public tends to give merit and a listening ear to those whose title includes terms such as "expert," "doctor (PhD, MD, DO, Ed.D, JD, etc)," "scientist." Sometimes these often well-intentioned persons get very wrapped up in their own perspective and believe it is of course synonymous with the facts. Again, I started to think about health care and specifically, the paternalistic tendencies that modern health care emanates. I don't mean to imply that there shouldn't be experts, or people who can be respected for their unique perspectives and expertise. I just get weary when individuals use 'opinion' and 'fact' interchangeably, or more specifically, use one to define the other and vise versa.
            
            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

"When Research is Flawed:...", By Henci Goer and for more  information see http://www.hencigoer.com/articles/). This OB client was 29 weeks along, which is more than enough  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 indistinguishable 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. 

I Thought We Were Supposed to be Encouraging People to Think for Themselves? Please Don't Place Me in 'Medical' or 'Natural' Birth Boxes

This is a lengthy one, as the title suggests:)


I have been pondering a particular issue that I see becoming more and more widespread. In the realm of natural birth (a realm with which I largely identify) I have noticed a common and disappointing attitude. It is this: not respecting families’ choices surrounding pregnancy, labor, birth, postpartum, newborn cares, infant feeding and family health. My admonishment is to those in the natural health world right now and particularly those in health provider and birth support/teaching roles, but anyone who takes an interest in the subject might gain something from this.

          We pride ourselves on being free-thinkers, not towing the party line, being non-conformists, being wise consumers who take responsibility for our health and family rearing choices. Yet, quite often, I think many in the natural birth world are actually guilty of the exact opposite. They encourage free-thinking and non-conformism, if they agree with certain viewpoints, but not others. Natural birthers (as I affectionately call us) get on the case of some in the medical community for being intimidating, bullies, or patriarcial and then some of them turn around and do the same thing, just on the opposite side of the argument. Many people, including myself identify with the natural birth world, but not simply because it’s different or countercultural and they want to “stick it to the man.” No, they identify with it because it reflects what they believe about pregnancy and birth: both are healthy, natural. History and current research continually confirm this fact: pregnancy, labor and birth are in and of themselves states of health, not states of disease. However, truly discerning people pick and choose exactly what they agree with even within the natural birth framework of thinking. The true free-thinkers pick and choose because some viewpoints are evidence-based and some are not. Many people get involved in the natural birth world because they are passionate about the subject and want to get the word out so to speak. Passion is wonderful, after all who wants to hear from a boring person who doesn’t care a lot about the subject? The dark side of passion, however, can show itself as coercion, manipulation and veiled (or not) criticism. Simply because a person identifies with some parts of the natural birth philosophies, does not dictate that he or she will or should fit into the “natural” box. Additionally, simply because some people are part of what some call Western Medicine, does not mean that they know nothing of natural remedies or nutrition or pregnancy or birth as nature intended. We all have our own backgrounds, our own philosophies and personalities; things that are important to us and things that are less important. Things that work for us and things that do not. We all have our own reasons for choosing one course over another. Let me give some specific examples. Below are a few examples of choices we have in health and family rearing:

Type of childbirth class to attend, if any – Lamaze, Bradley, CAPPA, Hypnobirthing, hospital sponsored classes, none, etc.

Type of Provider for prenatal and birth? Lay midwife, Direct entry midwife, certified nurse-midwife, OBGyn, Family Practice physician, none.

Type of provider for family wellness? MD, DO, nurse practitioner, chiropractor, doctorate of naturopathy, a combination, none.

To circumcision sons or not to circumcise sons?

Cloth or disposable diapers or both?

To use or decline or use selective prenatal testing (e.g. GBS status, GD, Quadscreen, ultrasound, etc)

To immunize or not to immunize or utilize selective immunizations?

To buy/eat organic or not or to purchase selective organic products?

Food or nutritional or supplemental substances: avoiding altogether, using in moderation, using selectively, not purposely avoiding (e.g. caffeine, alcohol, pharmacological medications, dietary supplements, vitamins and mineral supplements, herbs, tinctures, fast food, etc)

Controversial substances: avoiding altogether, using in moderation, using selectively, not purposely avoiding (MSG, TSP, BPA, gluten, s uper absorbant polymers/sodium polyacrylate, artificial sweeteners, cleaning products etc).

To accept or decline or use selective medical interventions (e.g. pain meds, etc).

To accept or decline or use selective newborn routines: Vitamin k, eye prophylaxis, PKU or other labs, etc.

To breastfeed, pump/bottle feed or bottle/formula feed.

To use pacifiers or not.

To baby-wear or not to baby wear or to sometimes baby-wear.

Sleep-Wake Habits: infant sleep training, attachment parenting, scheduling, co-sleeping, combination.

Baby food -- making own baby food versus buy packaged baby food, use combination

Family “planning”—hormonal contraceptives, barrier, NFP, faith in a higher power.

          The list goes on. I am a firm believer that there are some things that are more safe and more healthy than others. No kidding! That is usually why we choose what we choose. I do not believe in wishy-washy relativism. I do not believe all life choices are relative to individual situations and that there is no best way to do things. Actually, I do believe there is a best way to do things. But, my only business is my own business. I can have an opinion, a strong opinion, but when it comes to sharing it with others, it needs to be tempered with encouraging them to research and decide for themselves and respecting them for actually making their own decision. Most choices in pregnancy and birth health are not moral issues, meaning they are not morally right or wrong, good or evil. They may be safe or unsafe, wise or foolish, productive or inhibitory, healthy or unhealthy. But these are not actually moral issues. Think about that. We are not speaking of morality here. We are addressing choices.

           One family may have found reliable information that leads them to decide to not immunize and another family may have found reliable information that leads them to decide to immunize. So what is that? Is one family right and one wrong? Let’s say yet another family decides they want to utilize some immunizations but not all of them. “What, but that doesn’t fit into either box?” Is the mere idea unthinkable? Two people can read the same research and come to opposite conclusions. Does that mean one is easily swayed and another is an independent thinker or vise versa? Consider, some choices really would be unsafe or cause distress for some individuals while the opposite would be the safest, most satisfying choice for other individuals. Only each individual can decide for him or herself. When talking about choosing between two things that both carry inherent risks (to use an intervention or not use an intervention for a potential problem), no provider or professional or friend can decide for a parent or family what risk they are more willing to bear. People make their choices for many reasons. Yes, there are many individuals who make their choices because someone told them to, or they think that is the only way it can be done or because they have never heard of let alone researched an alternate option. This is a great opportunity to share alternate viewpoints and encourage them to research the issue. It might get them thinking and actually researching. We shouldn’t shy away from sharing our opinions (especially as birth professionals or health care providers) or sharing that the choice the client is considering may be unsafe based on what the research says. In fact we should freely share what the research says. But I take caution not to assume that because a person has made a choice that is opposite of my choice (or what I would choose in a similar case), that they have neglected to do any research or really make an informed decision. Maybe they have researched a vast array of opposing resources and spoken to many individuals who vary in philosophy. You never know unless you ask them. Perhaps they have researched the topic more than I have. Having taken in all viewpoints, they have concluded that they will choose a certain route. A route that just happens to conflict with my philosophy. Well, so what? My philosophy isn’t their philosophy, now is it? I don’t have the same background, information, body, child, concerns or influencing factors. And, I am not the one who lives with the responsibility of their choice—positive or negative. We would be wise to remember that research studies, even very well done research studies can differ on results and conclusions and even professional researchers can interpret the data differently.

          Let me give more examples of seemingly opposing positions I have encountered: I've known women who faithfully take their hormonal contraceptives but would never dream of taking Tylenol for pain or Benadryl for allergies (pregnant or not). I know women who don't believe in taking medications (pregnant or not), but don't bat an eye at an epidural during labor. There are others who state they do not believe in using “birth control” (i.e. controlling pregnancy), but do use natural family planning to control pregnancy timing. Others don't immunize but do circumcise (their boys). Some immunize but don't circumcise. Others are committed to organic foods, homeopathic remedies, natural supplements but seek prenatal care from an OBGyn and wouldn't consider a natural birth, let alone a home birth. Some are passionate about home birth, natural living and also in sleep/feeding schedules and wouldn't consider co-sleeping or attachment parenting. Some believe in natural birth but don't breastfeed beyond a few months or at all. Some believe in low-intervention, natural pregnancy and birth, but don't buy/use organics, homepathics or chiropractic care. Some schedule their elective cesarean, but only buy organic foods from the grocery store. Some believe in natural birth or home birth, but also immunize and circumcise. Some believe in midwifery care for a natural pregnancy and birth, but utilize traditional western medicine for disease treatment and general health. Some believe in natural living but not in cloth diapers. Some use cloth diapers and eat fast food 5 times per week. Some are committed to fitness and nutrition but wouldn't consider a natural birth.

        Some look at the list of examples and say, what? There are people who will decline vitamin K for their babies at birth, but circumcise their sons? How does that fit together? Would it just blow your mind if I said these things actually CAN fit together? I know they can because these are real examples. I think some natural birthers unfairly tend to assume that if a person is choosing a certain path, she “obviously hasn’t done her research. Or if she did, she got her information from really bad, biased sources.” I think this is probably true in many cases. As an extreme example, any source that says it is “safer” and “wiser” for the majority of women to have a routine episiotomy rather than “risk” tearing is not a factually-based source. There is a lot of easily accessed, inaccurate information available. There are some things that we can confidently say are not healthy choices for most anyone and research has confirmed these positions, as in the above example. But let’s not assume because we felt black and white about some issues that others also should feel black and white about them or even that the issues themselves are indeed black and white.

         The point is that we choose what suits us, not because it fits into a box of “natural” or “medical,” but because our decisions and the decision-making process are as unique and complex as we are. We bring many things to the decision table. Each of our backgrounds is unique and no one else shares exactly the same history or future as another. There are many factors to consider when making decisions and we all have different factors and prioritize them differently. We sometimes make decisions that at the time seem like the best decision to make given the present information and our level of confidence and understanding. Sometimes, we look back and realize that wasn't the only choice we had, but at the time, we did what we felt was best. Sometimes great amounts of fear and distress are associated with our decisions, and we make the best decision we are capable of making at that moment in time.

         When providing information and resources to people, birth professionals and health care providers have an obligation to be honest and not provide only those resources which support their own opinion. Neither should we provide information from inflammatory, strongly biased and combative resources. These serve to appeal chiefly to emotion and often ignore variations in sources of evidence. If we provide only one side of the argument and discourage and berate the other side, in the end we haven’t encouraged free-thinking at all. We have merely attempted to clone ourselves and our philosophy. We have sent the message whether intentionally or not that the only good, intelligent and loving choice is the one we have presented. If the opposite choice is being considered, some families feel they are judged by others as “cruel,” “ignorant,” “lazy,” or “simple-minded” But, wow, whose being patriarchal and manipulative now? Again, I am not advocating that providers or birth professionals withhold their opinion, but they need to be very clear that it is just that, an opinion, not necessarily directly quoted from reliable research. On the flip side, we do have an obligation to share with patients, clients, students and friends what the research says is safer and what is more risky, but in the end, they decide. Remember, respecting a person's choices is not the same thing as agreeing with their choices. We respect their right to choose options and the fact that they did make a choice, even if we do not agree with the actual choice.

        Here’s the fundamental point. Let’s not shove people in a “natural” or “medical” box. There are so many variations on these two themes. Practice what we preach about encouraging free-thinking and informed consent. Consider the possibility that your viewpoint may actually be inaccurate and may not be supported by the research. Gasp! If we have been enculturated in a certain way of thinking, we often don’t research issues ourselves to validate our beliefs. We don’t feel the need to; we repeat what we have heard for so long from people we admire and trust or want to admire and trust. We get lazy and don’t check it out for ourselves. Every one of us does it at one time or another! So, it is very possible that another individual who has an opposing view (or even someone less experienced than you) has actually done more research than you have or, more specifically, studied more reliable and objective sources than you have. Let’s remember where we live; in a country where we have the right to decide what we want for our pregnancy and birth and what we choose to decline. These rights are threatened by groups who say things like mothers who “refuse” antibiotics for GBS positive status during labor are putting their babies in direct harm, or groups who advocate that any parent who immunizes or circumcises their children is cruel, ignorant and “unmotherly.” (I am very into quotation marks today.) Neither group is truly respecting that it is the individual’s choice, not theirs. New parents are often in a vulnerable place; they want to be able to trust that those caring for and teaching them are giving them factual information. Our job is not to make choices for our students, patients and clients or even to tell them what choice they should make. Our job is to show them where to find accurate information on all viewpoints and help shore up them up to make their own choices. This is no small task. Let me pose a question to you: did you get into the natural birth movement to have a platform for your soapbox or to strengthen those who need a voice and help them take responsibility for their health? Only you can decide the answer to that question.:)