This is a cross-post from my LinkedIn newsletter. Feel free to join the conversation there or post your thoughts in the comments below.
Every single day, Emily Kramer-Golinkoff takes 30+ pills, plus insulin, and engages in hours of breathing treatments. She is a sought-after expert on patient-driven scientific discovery, having co-founded a nonprofit, Emily’s Entourage, that pursues breakthrough therapies for cystic fibrosis (CF). She has meticulously managed her health for decades. And yet, when she has to check into a hospital, she is asked to hand over her meds to the in-house pharmacy which is staffed by people do not have her depth of experience with CF. Sometimes they do not even have the required, highly specialized medications on hand.
“Nobody tells you this ahead of time so you have to anticipate what they won’t provide and bring it just in case,” says Emily. “Some of our meds are expensive and if they come from my personal stash, I don’t feel comfortable handing them over to be kept outside my room though I am happy to report to them when I take them so they can log it in their records.”
The requirement for an expert patient to hand over all their meds is an example of a rule that does not make sense, a “false boundary” between home and hospital care. I learned that phrase from Clayton Christensen, who warned that we miss opportunities for progress if we never question existing frameworks.
It takes courage for a patient or caregiver to push back against hospital policy – or any boundary they encounter. And, of course, there are times when it is not appropriate to question authority. But when it is necessary to seek help, people can gather online, learn from each other and other experts, and stand up for themselves.
My upcoming book, Rebel Health, is a field guide to the patient-led revolution and includes more stories about Networker-Solvers like Emily who build what they need – or think should exist.
Your turn: What are some other false boundaries in health care?
The people you’re talking with have already blown past this false boundary, but I have seen people comment in writing that they believe the medical privacy act forbids them from sharing their own medical information. This reminds me of the time that nurses wouldn’t allow patients to know their temperature and blood pressure in the intake exam without speaking to the doctor because of some over-generalizations of some instructions somewhere along the way—resulting in fear and apprehension while waiting for the doctor. Authoritarianism is the last stronghold of an illegitimate power.
You said it! Thanks, Diane. I wrote my book as a way to help people step into their power as patients, survivors, and caregivers. I want everyone to know that it is possible to push back, ask questions, and gather insights from peers.
Many years ago as I began my journey as a citizen end of life reformer I posed these questions: Who owns our dying? Who controls? What is required of you, and of me, to die in peace, and at peace?
Along the way I discovered a few things. That the “medical conveyor belt”, a useful medical analogy for systemic mechanized EOL protocols, is not a gigantic singular element that appears at the double doors of any institution, but rather each of us harbors our own personal medical conveyor belt deep within us. (This is an aspect of a query into answering the age old conundrum and the second obstacle in my EOL lexicon, how to determine when enough is enough).
A decade or more on I perceived the existence of what I came to term the Opaque Dying Marketplace (the Opacum Emporium Mortis in Latin, the language of medicine). Two examples:
– the “medical conveyor belt”, a useful analogy, is not a gigantic singular manifesting at the doors of any and every institution, but rather we each carry personal medical conveyor belts within us (and hence our difficulty in determining when enough is enough; this is obstacle #2 in my EOL lexicon)
– for over a generation Medicine has exhorted everyone to execute Advance Directives (a necessary act) and to submit them to Medicine—in other words, for us to disclose, in advance, our orientation around EOL matters. How about some reciprocity? I challenge you to learn, in advance of need, the range and orientation of EOL services provided by any med pro, practice, clinic, facility, or institution. Good luck! (acknowledged, this is just now beginning to change; some are actually including on their websites statements regarding this). Relations require reciprocity, in its absence we’re left with transactions.
Fascinating! Thank you, Bart, for the suggestion to flip the Advanced Directive conversation into one that asks questions of clinicians & institutions, not only of patients & caregivers. That is a boundary I had not seen before.
Another one: a 4th EOL trajectory to extend Joanne Lynn’s 3 legacy EOL trajectories (cancer, organ failure, cognitive decline). Erroneous, where an unknown period of life is cut short due to deaths that might not have occurred had medical error not occurred. I charted it and ran it by Dr. Lynn, who in an email exchange allowed how it was valid.