Healthcare delivery systems and chronic non-diagnosable illnesses

Sigh.

I became involved in a discussion about the problems that healthcare systems have with patients with long-term chronic, difficult-to-diagnose conditions. I don’t know if a satisfactory discussion is ever really possible on Twitter, with its 480 character limit placing a severe constraint on how much information can be conveyed in a single response.

I already had one person stomp off and Block me because I told her that her responses were wild and not helpful. She converted my observations about the limitations of the healthcare system in coping with long-term chronic conditions into an allegation that I was ignoring the issue altogether, because I noted that what we least need, at a time when medical professionals are under attack from the twin pincers of anti-vaccination activists and Covid deniers, is another campaign against the medical profession. This was apparently me ignoring the issue. At that point she was off and running on a predictable rant about how I was part of the problem. Nope. Next discussion time.

What I left unsaid because of lack of space was that the healthcare delivery systems that we have created in the USA and elsewhere have incentives built into them that militate against the correct levels of investment and attention to both mental health issues, and long-term chronic conditions that in many cases have no obvious root cause.

The medical profession operates to a classic paradigm:

Evaluate –> Diagnose –> Treat

The ultimate end point is a healthy satisfied customer. (Unfortunately, as we all understand, this is not always possible. Some people, despite the best efforts of the medical profession, leave this life. The profession may, however, be able to facilitate them leaving this life in a peaceful and painless fashion).

The challenge is when step 2 (Diagnose) fails to find an obvious cause. Instead of a narrow range of treatments (relatively), an unclear diagnosis leads to potentially hundreds or thousands of possible treatments. This is confusing enough for doctors and specialists. The entire treatment regimen becomes a crapshoot, with low chances of initial success.

At that point, however, in the USA, the insurers also insert themselves into the equation. Sometimes payment for certain treatments is denied, then a tussle develops between the the patient, the doctor and the health insurers, which leaves the doctor stuck in the middle, with both of the other parties unhappy. I once talked to a PCP about this, he was getting ready to retire rather than continue to be “caught in the middle” as he put it.

The incentives in the system, in short, work in favor of easily diagnosed issues, with clearly defined outcomes. Everybody benefits. The medical profession and the hospital systems get happy smiling patients who are cured of whatever malady ailed them, and the health insurers get clean closure, and all bills paid (until the next illness).

Chronic unexplainable maladies are usually not amenable to quick fixes, either pharmaceutical or surgical. Patients may require years of care. This upsets doctors, who see those unhappy patients over and over again, hospitals are largely out of the picture, and insurers see open-ended treatment plans that cost them more money than they can recover.

The result is that many chronic long-term afflictions, many of them with probable auto-immune origins, and now (recently) what is known as “Long Covid”, are not well-served by the healthcare delivery system. People presenting with chronic fatigue and other real but non-diagnosable symptoms are, in some cases, being referred to psychologists and psychiatrists because their primary care physicians are unable to locate a physical cause for the problem. Unsurprisingly, the reaction from most patients to this idea is not a favorable one. No matter how tactfully presented, it is difficult to process the message “the root cause is in your brain”. It feels like a kiss-off.

Unsurprisingly, many unhappy people with chronic but not-treated conditions adopt a cynical mindset, best summarized by this actual quote from my earlier discussion:

Of course there are outliers, but many many doctors hate the idea that they can’t have a obvious win and so would rather deny the existence of chronic illness all together.

The inevitable result of (as they see it) being ignored by the conventional “Western Medicine” system leads many people to DIY remedies, based on OTC drugs, or cannabis, or other naturally occurring substances. More dangerously, some seek help from the fringes of the medical profession, that world inhabited by a motley collection of amateurs with big ideas, cranks, charlatans and outright deceitful criminals. Run-down, depressed and vulnerable people are often easily persuaded that a new and exciting sounding treatment will cure that affliction that those damn doctors have been no help in addressing. Quite often, people spend lots of money for poor outcomes, but failures are often not discussed. The patients often have no recourse, because those shadow areas are unregulated or poorly regulated, and, equally importantly, it is difficult for anybody to admit “I was conned”. The mainstream medical profession is, by contrast strictly regulated, despite what some conspiracy-dazzled cranks would tell you.

At this point I can offer my own personal recent experience. I am a recent observer of the limitations of the healthcare system with respect to what is now known as “Long Covid”. I contracted Covid-19 in late December 2020, and despite only being mildly affected (it was like 12 days of intermediate flu, and I was never sick enough to need medical attention or hospitalization) I have since been impacted by a number of consecutive maladies, none of which I previously ever suffered from. In nearly all of these cases, despite my informing the doctors that I had contracted Covid, the doctors listened, nodded sagely, and then appeared to default to the standard approach of their specialty and looked at my malady through their standard evaluate–>diagnose–> treat lens.

The positive result is that some parts of my body (notably my entire GI tract) have been thoroughly inspected this year. This is good. I know that those parts of my body are basically in good shape. However, I have been left with the uncomfortable feeling that the medical profession is very slow at “joining the dots” on the impacts of Covid-19 on the human body. It was only recently, on a follow-up GI appointment, that I sat and heard a GI specialist say “yes, your GI issues have probably been caused by Covid-19”. Up until that point, I felt that the medical professionals I was consulting with saw the malady as “here is a guy who has X for some undetermined reason” instead of “here is a guy who has X, has had Covid-19, therefore this might be an after-effect of that virus”.

I hesitate to classify myself as a Long Covid sufferer, because it is less than 7 months since I was infected, and my current health seems to be good. I was not hospitalized, and I have only had 2 diagnostic procedures since. However, nobody yet knows what the long-term effects of Covid-19 infection are on the human body. There simply has not been enough elapsed time to evaluate that. Has my lifespan been shortened? I don’t think we have any way to know that. Were my maladies all the result of Covid? After all, I am now moving towards the end of middle age. There is no easy answer to the question, without me becoming some sort of laboratory test subject.

IMHO, the initial failure to take Long Covid seriously, and instead treating sufferers as suffering from a conventional affliction spectrum, has held back detail examination and research of the possible effects of Coronaviruses on the human body, medium-term and long-term. It is also a very real exposure of the limitation of the current 3-stage medical treatment model, which dominates the profession at this time, and which is reinforced by incentives all throughout the healthcare delivery system.

Is there any easy fix to this? Nope. The healthcare delivery system, dominated by insurers in the USA, is also not a great place to start. I suspect that innovative solutions will come from a country that has a well-run government healthcare system and wants to address the two endemic blind spots of the healthcare world – Mental illness and Chronic (sometimes lifetime) health issues with no immediate and obvious cause.

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