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What Dorothy Said to Toto

In the 1939 iconic musical fantasy, Wizard of Oz, Dorothy cradles her little dog Toto when a tornado transports them from her home state in Kansas to an unknown fantasy world where Dorothy comments, “Toto, I’ve a feeling we’re not in Kansas anymore.”

This phrase has been interpreted to mean that we are not in our usual comfort zone, we are in a state or place of confusion and disorientation. Our routines have been upended, the predictable has been derailed.

In the movie, the secret to getting back to Kansas, to getting back home was, for Dorothy, to click the heels of the ruby slippers. For us in our COVID, monkeypox, mass shooting, political and social unrest and uncertainty world, we cannot close our eyes, click our heels, and hope to be transported back to our safe, warm, and predictable normal.

But now for the rest of that story.

Picnic Table Talk

During the Fourth of July weekend, the stars aligned, calendars were in sync, and a small gathering of our family members took place in a park. For just a few minutes, we were in Lake Woebegone, “out there on the edge of the prairie.”

As the afternoon unfolded, there were conversations and discussions that brought us back to reality. Not about apocalyptic gas prices, not about crippling inflation, not about another carnivorous global pandemic—but about healthcare. This clearly in our family has become a flashpoint, the third rail that when touched or explored can unleash powerful emotions.

Not just in our family but in almost all families. We each have nightmare stories of predatory hospital bills, unreasonable delays in seeking care, and being ensnared in the gears of a bureaucratic, indifferent system.

Here we are in one of the most technologically advanced countries in the world where putting the proverbial man on the moon or ordering pizza on a cell phone is easier than having access to healthcare.

We shared frustrating stories about the clumsy electronic medical record, about phone calls to providers that were not timely returned, about blood tests and images that were duplicated or missed. And there was that mournful paean, elegy for the “good old days” when we knew the physician and he knew us (in the distant past most physicians were men, now, most are women, no judgment, just observing), when we felt listened to and validated and acknowledged—and there was general satisfaction with the quality of care.

Okay, let us explore what happened and how we can participate, be proactive, and partner with the healthcare system to obtain the care that we need and deserve.

When Did This Train Go Off the Rails?

It’s hard to know when the change exactly happened, but let us pick the 1980s and 1990s as a starting date. The explosive development of imaging technology such as CT scans and MRIs could not be paid for by the small mom and pop clinic or hospital. Organizations became conglomerates through mergers and acquisitions. The physician-led organization by a kind and all-knowing fatherly clinician, while idyllic, is not reasonable and our fast-paced multispecialty environment often involving thousands of employees and budgets approaching millions of dollars evolved.

Most healthcare systems require the input of business credentialed individuals with an MBA or CPA or related expertise to manage these byzantine empires usually in partnership with the physician. The healthcare providers in effect became employees of these organizations. And almost all healthcare providers work for these behemoths of bureaucracy. There is little autonomy and there is almost a “conveyor belt” mentality, which any doctor or other healthcare provider will articulate if asked and even if not asked.

Throw the insurance company or Medicare mandate into the exam room, and the poor patient has now become the victim of overscheduling, the six-minute exam, the overworked and underpaid healthcare provider who spends more time in front of the computer entering data instead of face to face with real people, and, well, that’s healthcare in the US today.

In the face of these seismic changes, what can we as patients do to work within the system?

  • You need to be street smart and savvy when it comes to technology. You need to understand the electronic patient portal which almost all organizations have, and you need to swallow your pride and ask for someone to show you how the system works.

Most organizations have someone who could hold your hand and walk through the mechanics of requesting a COVID test, following up on blood studies, and reviewing the clinical notes of the provider.

Why is this important? Our health and well-being and sometimes your life depends on it. An elderly family member was plagued by vague abdominal pain. If she had been able to access her online health record, she would have known that some of the medications which were recently started could have been culprits.

  • The phone call to the provider’s office with a quick response is not realistic anymore. You are encouraged to send electronic messages to the provider carefully outlining your concerns, but if you have not heard back within a reasonable time, let us say three to five days, you need to speak up, get on the phone, and respectfully address the issue. No news is not good news. It’s miscommunication.

  • The typical outpatient visit with a healthcare provider may last just seven to ten minutes before you're hustled outta there. Have a short list of concerns, know your medications, and be prepared to be concise and direct with your health issues. And above all, write down what the provider suggests.

  • A medical encounter can be stressful. Patients cannot be expected to understand the significance of some concerns. If you are forgetful, if you are plagued with anxiety about the upcoming visit, bring someone with you to act as an interpreter, a translator to reframe the comments of the provider later and to take notes.

Bottom line: Dorothy was right. We are no longer in Kansas where our life was predictable and orderly and people actually spoke to each other. A tornado of technology has transported us into a foreign culture where to get the care that we need and deserve, we need to understand that culture, to know our way behind the curtain, to fight off the monkeys and bad witches, and to understand the system and seize the day just to get the care we deserve.

After all, no one has a greater stake in our health and well-being than we do.

I have revised my award-winning book, How Not to Be My Patient, and I invite you to read more insider tips on negotiating the healthcare system, understanding your electronic medical record, navigating your patient portal with confidence, and signing onto a telemedicine visit to get the most from this virtual visit. [Read the ebook free with Kindle Unlimited.]

Available in paperback, ebook, and audiobook on Amazon.


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