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Navigating Medical Nuance – Disease, Un-ease & Uncertainty

Grappling With Medical Uncertainty

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I’m now living in the land of medical uncertainty – as in waiting for lab test results for the eight polyps removed during my colonoscopy yesterday. We all experience this, sooner or later – first for loved ones, then for ourselves.

It’s impossible not to consider your own mortality during such times – something we generally have little time for and wish to avoid anyway.

While grappling with such weighty matters is part of life, it’s important to make sure you understand that disease doesn’t start when you receive a diagnosis.

You may think you’re disease-free now, yet be a doctor’s visit away from discovering this isn’t the case.

This underscores the tenuous nature of our self-perceptions about our health – and our mortality. The truth about both is far removed from the certainty we all crave.

Navigating Nuance

We live in a polarized culture with little patience for nuance. Our media-driven perspective of the world is more black-and-white than ever – good vs. evil, God vs. Satan, liberal vs. conservative. Applied to our healthcare, this often leads us to seek simple answers to complex problems.

In medicine, however, there’s often no “right” answer for a given condition for an individual patient. This is not what most patients want to hear. Too many of us expect neatly-packaged answers wrapped in medical certainty – a medical “product”, if you will.

Instead, much of medical treatment and healing is a process – filled with uncertainty and ambiguity. There are no black-and-white answers – just varying shades of gray.

And the internet can compound our unrealistic expectations. The internet is a vast resource with tremendous potential for informing and empowering patients to become better medical consumers. But it’s also an unregulated “wild west” of information and disinformation silos that can mislead rather than inform. Conspiracy theories abound, many of them absurd. This is bad enough in your politics and finances, but it can be lethal when it concerns your healthcare.

Yet Our Healthcare Sucks establishes that there are plenty of actual conspiracies going on in how healthcare is practiced in America today, from concealing medical errors to promoting unneeded tests and procedures to increase the incomes of doctors and hospitals. So how do we sort the real from the imagined and focus on the best information for what troubles us medically?

The answer is…“very carefully”, and with patience and the expectation that we may have to live with uncertainty and ambiguity. But we can at least insist it be well-informed and carefully considered ambiguity – an objective assessment of risks vs. benefits free of the conflicts-of-interest that permeate medical practice today.

This is the grown-up alternative to childish desires for medical certainty and simplicity that don’t exist. Simply put, there’s no Santa, no Easter Bunny, and no such thing as medical certainty.

We Want Answers and
We Want Them NOW!

Beyond childish expectations, what explains the seemingly irrational behavior by so many of us when confronting disease?

There’s no simple explanation, of course – human nature and psychology are complex and variable with each of us. But there are several underlying forces at play nudging us into often poor medical decision-making.

These include:

  • Fear – Many medical decisions are made in a state of shock that morphs over time from being scared by your initial diagnosis to a chronic fear that underlies your entire treatment regimen. This increased stress worsens your prognosis and leaves you easily exploited by those with financial interests in your treatment regimen;

  • Underestimating treatment risk – Most people have inflated expectations of treatment benefits and a lack of respect for the damage that treatment can produce. This is aided and abetted by a mass media culture that cavalierly promotes pill-popping remedies and “miracle cures” for every ailment;

  • Search for certainty – No one likes uncertainty, and treatment decisions are often made with a false expectation they will provide certainty for a medical threat when certainty is impossible. This vain search for medical certainty reflects a misunderstanding by patients of the evolutionary course and systemic basis of disease – most older adults are never completely “cancer-free”, for example;

  • Need for speed –  Our cultural impatience for immediate answers and solutions is reinforced with  the immediacy experienced with cell phone communications, text messaging, movies “on demand”,  and other cultural imperatives that promote impatience and a sense of entitlement. We want answers and we want them now – even if their haste means they’re likely to be the wrong answers; and

  • Financial incentives to ratchet-up treatment – Fee-for-service payments that survive Obamacare in the U.S. serve to not only encourage more treatments than necessary, but to intensify treatments to receive the higher payments they generate.

These and other factors combine to increase the odds that our medical choices will be hasty, ill-informed, and very often wrong.

Finding the ADULT Within

So how does all this help folks like me caught in this time warp of waiting for our diagnosis? Do we  cower in fear or put the time to good use by learning what we can about our options if it turns out to be something other than a false alarm?

And even if it’s not, polyps aren’t cancerous. Even the worst kind – adenomas – are pre-cancerous. This makes them somewhat like the calcium deposits found in mammography (as ductal carcinoma in situ, or DCIS) – pre-disease or pseudo-disease that’s too often treated as aggressively as advanced disease.

A simple online search produces the following from WebMD:

“Here is how adenomatous colon polyps are treated:

  • Then, once the colon is ‘clean’ of polyps, experts recommend repeat colonoscopy every 1 to 3 years.

  • If follow-up exams continue to be normal, further screening recommendations will be determined by your doctor.”

This time awaiting lab or imaging results can also help us anticipate our responses and better avoid over-treatment that may cause more harm than the disease we fear so much.

It also helps to put things in perspective. Baby boomers will recall the lyrics from “Sixteen Tons”…”If the left one don’t get you, then the right one will”.

This isn’t meant as fatalism, but rather a recognition that we all die someday – the rich, the poor, the smart, the not-so-much. Everyone. Nobody outsmarts – or outspends – mother nature.

Maybe we need, as a society and a culture – to “get over ourselves” and stop expecting that medical science will find a cure for mortality in our lifetimes. We’re not meant to live forever – and we already live longer than any generation before us.

While it’s natural – and wise – to make reasonable efforts to delay the inevitable, shouldn’t we be more grateful for the already-extended lifetimes we’ve had and do our best with what time we have left?

That’s my plan and I’m hoping to stick to it.

In the meantime, I’ll update my research on colon cancer with the latest findings so I’m as prepared as possible for whatever results my lab tests produce (remembering that lab tests, like everything else in our healthcare, can be mistaken).

Eight polyps are a lot of polyps. But I had two on my first colonoscopy and none five years later on my second.

With any luck, I’ll merely have to monitor myself with more frequent colonoscopies. And while that’s no fun, it’s a small price to pay for the added options afforded with earlier detection.

And sooner or later, I’ll have to make some decisions about treating this or any number of other conditions that will threaten to end my time on this mortal coil.

And so will you.

Let’s make them well-informed choices driven by factual probabilities – with all their inherent uncertainties – and not by fear or the financial self-interests of our medical providers.

Let’s try, at least, to be grown-ups.

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John Lynch: John Lynch was founder and CEO of Medical Diagnostics, Inc. - twice named to Business Week's "Best Small Companies" in America. He's since founded MedSmart Members to publish consumer health education publications.
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