Definitions: New Terms of Engagement
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I consider right language to be a baseline for effective advocacy as a medical proxy and to increase our likelihood of dying in, and at, peace. These definitions are my personal baseline, a foundation upon which all of my work developed and matured.
Right definitions are the foundation of engagement. Language matters because it frames our worldview. Language underlays our assumptions and expectations (however dubious having either may be…)…especially when we’re vulnerable, in a situation in which effectiveness requires right thinking. It’s too easy to lose the first week of some hospitalization in a state of passive uncertainty, unsure about both what is happening and what isn’t happening. And if it’s a 3-week terminal hospitalization (the typical and average US duration), that’s a week we can’t afford to lose. Reclaiming language is a vital first step in orienting ourselves to fulfill the role that medicine urges us to take on: advocating for our hospitalized loved one.
Here is a brief presentation of definitions to help orient you toward effective advocacy for yourself and your loved ones. Click here to download the complete writeup.
What Hospitals Provide I no longer use ‘care’ and ‘care team.’ We know what care is; I have come to call it ‘mom and apple pie care’; we learned it from our parents and provide it to our loved ones. Hospitals provide something different, and waiting for care can dull us in our role as advocates. Here’s my full definition:
Hospitals provide bodily repair services under the direction of independent physician-scientists and nurse-monitoring on some schedule.
Prognosis vs. Forecasting ‘Prognosis’ is “the likely course of a disease or ailment.” To ‘forecast’ is “to predict or estimate a future event or trend.” Forecasting guides us by outlining a possible future. The goals of forecasting include adequate disclosure with adequate lead time, the ability to plan, decide, and execute, and to reduce the likelihood of patient-family destabilization due to the shock that often accompanies news of next steps that have not been forecast.
Wash vs Disinfect “Please wash your hands” is the wrong phrase because it’s inaccurate; hand washing is not the issue, disinfecting is. Hand washing is a procedure to disinfect. Infection is the danger. A request to wash can be brushed aside; a request to disinfect is a professional one that precisely targets the problem and risk.
Discontinuity ‘Discontinuity’ is a medical term used to refer to a breakdown in communication leading to a breakdown in accurate, effective treatment (the dictionary definition is “a breakdown in sequence or time”. Every field has, and ought to have, its own language; internal conversation requires that for efficiency. Here’s the rub: our experience of discontinuity is typically shocking and even harmful. ‘Discontinuity’ fails to acknowledge or convey our experience of it—and our experience is what matters. So: discontinuity is the breakdown of communication and treatment leading to or resulting in unnecessary risk, shock, and harm to patient-families.
Windrum’s Matrix of Dying Terms™ We say we want to die in peace—meaning at home. We set that off against the awful opposite—tubed and wired up in an ICU (intensive care unit). We use these two extremes as if to express the universe of dying possibilities, but they don’t. We are profoundly wrong, oversimplifying the nature of dying in our complex world. Windrum’s Matrix of Dying Terms identifies and names the full range of dying outcomes, or situations, ahead of all of us in the 21st century. Read up on Windrum’s Matrix of Dying Terms here.
Bonus Definition: Persient Persient: a person in need of medical attention. The patient safety and empowerment world has pondered and gone back and forth about what to call people in need of medical treatment. The goal is to utilize language that puts the focus on the person and their personhood rather than medicine or one’s role as a patient. Hence persient [pers (ē)ənt] derived from person and patient. The ‘s’ places the emphasis on personhood whereas a ‘t’ would place the emphasis on patienthood, and persient is close enough to ‘patient’ so as to represent a minor pronunciation change. Risky business, coining and introducing new language—yet new words are added to language every year (and sanctioned for inclusion in the dictionary). Feel free to use persient (and let people know you heard it from me).
Bonus Guest Definition: Nequamitis (to replace the phrase “medical error”) From Joel Selmeier, this fascinating suggestion: Nequamitis. Nequam is Latin for worthless, good for nothing, or bad. Itis is a suffix derived from Greek meaning inflammation, a very common medical term. Nequamitis refers to systemic harm emanating from other than innocent human error. Thank you Joel for surgical precision in naming a condition afflicting medicine using the language that medicine uses.