Why “Collective Well”?

I admit it, I like words. I like clever words, funny words, word play. And I also like meaningful words. I believe that carefully chosen words, when backed up by corresponding thoughts, sentiments, and genuine actions that make those words ring true, make all the difference. I also have found that the messaging and nomenclature we use in medicine can have unintended consequences when heard by patients, families, teachers, or community members. For instance, in my field, I often see children with a murmur, which is quite frequently a benign or innocent, normal finding of hearing the blood as it flows by in a growing child’s chest. Undoing the amount of angst generated by that word “murmur” could keep me in business a long time; not only does the word have an evil or sinister sound to it (remember “redrum” from The Shining?), but it seems to connote a tangible “thing” that is lurking in the child’s heart, which somehow cannot be good. If we had simply said “flow sound” or “whoosh” or any number of other words, then right away we would be having a different conversation with the family. The same is true for words that can be used in several circumstances but have different meanings, like an ECG finding of a “bundle branch block” may be a benign finding, but the word “block” immediately makes people concerned about an arterial “blockage” or coronary artery disease, which is totally different. So why is this blog called “Collective Well”? I was getting to that. DSC_0462

I feel very strongly that in order to have optimal patient outcomes, we need to engage the medical system, the patient/family, and the community in a three-way conversation to improve communication, correct misunderstandings, optimize accurate information transfer, and develop a community that will help support the child and help put their condition or disease in perspective. With that kind of support, a child can start to explore their potential, and then we will be on the road to optimal outcomes. Since antiquity, communities have developed around shared resources, often starting with that essential ingredient, water. The central town well was the cardinal landmark and where villagers would gather by necessity. Once gathered, people can greet one another, have a conversation, share best practices, support one another, and share a cup together. Vendors often spring up around this kind of town square, like the old Roman piazzas, bringing efficiency and convenience to that trip to the well. Camaraderie develops, as does neighborhood pride, and the community is elevated. So in this spirit, we have been working on an idea for a virtual gathering place where all stakeholders- health care providers, policy makers, advocates, vendors, payors, community members, corporate employers, patients, families, and everyone in between- can gather and have a conversation around this central town well, share best practices, access resources, and develop a sense of shared spirit. In that setting, children can blossom, neighborhoods flourish, and we all become, collectively, well. There you have it. Collective Well. Let me know what you think.DSC_0483

5 thoughts on “Why “Collective Well”?

  1. I’m so thrilled to see this blog and have always enjoyed your use of the words you so love. You paint a beautiful picture of acceptance and empowerment for children that I am happy to see manifesting itself into reality more and more each day.
    Your description of the power behind the word “block” made me recall the reaction of one patient to the word “disease”. She hated that word. She hopes that the medical community will continue to lean more toward words such as “condition”, as in “congenital heart condition” to describe something that is a part of her, but not as devastating sounding as the word “disease”.
    The importance of word choice is seen everywhere in our lives. It is always interesting to hear people share their reactions to certain words. Thank you for starting this conversation!

    • Another term commonly used is “congenital heart defect,” which similarly carries the negative connotation of defectiveness. It is ironic and terrible that we give our children labels based on their condition. When I think of tiny muscular ventricular septal defects (VSDs) for example, which are as a category benign and self resolving, we tag our children, with all their potential but who also happen to have a tiny little hole between their ventricles, as having (and by association, being) defects. While far from the intent, I believe it is a message that is heard more often than we’d like to imagine.

  2. I have long been fascinated (and infuriated) by linguistics and how people use, or don’t use language. Words, especially repeated, are so powerful. One example would be Trump and how he’s completely obliterated the boundaries of how politicians, and media reporting them, speak.

    In my person experience with Luna, the first “blow” of words hit me when I was diagnosed with her during the level 2 ultrasound that had been ordered bc “they needed to get a better look at things” in the first. The technician pressed the probe on my gel covered belly and while looking at the screen said totally matter of fact, “I don’t specialize in fetuses normally, but even I can tell your daughter has half a heart and it’s on the wrong side of her body”. I walked out of there feeling like I was carrying Frankenstein’s baby.

    But you Dr. Gauthier truly changed all that! The metaphors you painted about Lu’s heart and anatomy helped me to understand her condition, and also brought a sort of whimsical hope (perhaps because your descriptions are so lyrical and paint such vivid images), that I went from feeling desolate to empowered.

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