It’s the start of a new year amid what is hopefully a rapidly peaking Omicron wave of COVID 19, and it is common for people to forecast what will happen in the upcoming twelve months. People who have studied expert forecasts note they are wrong more than they are right, and the best option is usually to predict “more of the same.” So, I will not engage in any forecasts, but I do want to start on an encouraging note.
On 11 November 2021, David Leonhardt wrote an article in The New York Times on chronic pain syndromes that he titled “To Give Them Hope.” He wrote:
“American medicine often struggles with subtlety. It treats many conditions as binary: you have it or you don’t. It fetishizes individual research studies and dismisses broader evidence or logic…Reality is often messier. Scientists still do not understand many common health problems, including chronic pain, and many may remain mysterious for the rest of our lives.”
That is certainly true, but it is also true that neither patients nor doctors, or anyone else for that matter, really accepts “I don’t know” as both an honest answer and, perhaps, the only answer. We in Western culture often think in terms of “either/or,” when, in truth, the best answer is often “both/and.”
Geng and associates put the challenge this way:
“Patients with unusual, perplexing, or complex symptoms and conditions are not well served by the fast-paced U. S. health care system. An estimated 20 to 30% of all primary care consultations are for “medically unexplained symptoms” for which standard evaluations have resulted in no medical diagnosis. Although clinicians may be tempted to assume that psychological factors account for these symptoms, this large and heterogenous group of patients also includes those with rare diseases, atypical presentations, new or unknown conditions, and complex illnesses that challenge standard evaluation. These patients have varied presentations and outcomes, but they often share a common experience: long, exasperating diagnostic journeys in which they bounce from specialist to specialist in an ultra-specialized health care system that reward high throughput rather than individualized care.”
The authors then proceed to describe the emergence of “consultative medicine services” at several referral medical centers. While once the province of the internal medicine generalist as an individual, these services are now usually based around the generalist internist, who arranges appropriate specialist evaluations and coordinates the care with the patient. One of the oldest such programs is based at the Mayo Clinic, where a short, (days), intensive evaluation of such patients led to a distinctly different final diagnosis in 21% of referred cases, and better-defined or refined diagnoses in 66% of cases.
“Consultative medicine offers a time-limited and distinct service for patients stuck in a system that has not served them well. It is best suited for patients whose conditions have proven “refractory” to initial primary care and specialty evaluation.”
Having been involved in a more informal referral system for difficult patients, I want to add a couple of observations. First, most of the patients I saw in this category had been “defying medical science” for quite a long time, and were often depressed, anxious, and/or angry with their situation. One of the barriers to treatment I often encountered was notion that if I could not give them a name for their condition, then I was suggesting it was “all in my head.” Of course, most of what a physician learns from a patient is “in their head” in the sense that everything depends upon how the patient reports his/her experiences and how I interpret what I am told. I often found it useful to contrast this mind-body dualism with Paul Tournier’s triangular diagram showing people are a complex mixture of their physical, emotional, and spiritual selves. While not directly treating the unknown disease, shoring up emotional reserves is often necessary. It is also necessary, as suggested in the NYT article, to give hope, which I would characterize as shoring up the spiritual side. “We don’t know exactly what is wrong, but we can work on making you feel better in the meantime.”
But engaging in empiric, symptom-focused treatment is difficult with today’s electronic systems, where every “order” has to be linked to an ICD diagnosis. While the ICD does include symptoms, insurance companies often refuse to pay without links to a “hard” diagnosis. Another problem for patients with a non-specific diagnosis is that they cannot tell their family and friends “what is wrong with me.” The isolation of not feeling good is thereby made worse. So, patients as well as doctors, want a name. Perhaps what we need is a term, maybe “Mayo Syndrome,” that can be used as a placeholder for the patient and the providers while efforts are made to alleviate the symptoms.
Forty years ago, Paul Starr wrote a book describing the history of American medicine from a sociological perspective. He noted the transformation from a cottage industry dominated by the doctors to an industrial system of standardization and protocols was well underway. He won the Pulitzer Prize and the Bancroft Prize for his book, and he was correct. But forty years on, we are beginning to see evidence of the limitations of the industrial system. We aren’t going back to the cottage industry days, but seeing evidence for the emergence of systems designed to take care of the needs of those who don’t fit and aren’t well-served by the industrial system is encouraging.
Consultative medicine is another instance where we should standardize what we can, but no more. I can’t prove it, but I believe we can standardize about 60% of our processes and our treatments. Perhaps another 10% of the time we can use experimental or developing protocols subject to constant change. But that still leaves 30% or more of the work we do reliant on individuals caring for other individuals, which matches reasonably with the estimate cited be Geng and associates. Can our money-driven industrial system deal with that much variability? If not, then what?
3 January 2022
 Leonhardt D. To Give Them Hope. 11 November 2021. Accessed at www.nytimes.com.
 Geng LN, Verghese A, Tillburt JC. Consultative Medicine—An Emerging Specialty for Patients with Perplexing Conditions. N Engl J Med 2021;385(26):2478-2484. doi:10.1056/NEJMms2111017.
 Starr P. The Social Transformation of American Medicine. (New York: Basic Books, 1982.)
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