An Emerging Sub- Specialty for Patients with Complex Conditions

Linda N. Geng, M.D., Ph.D., Abraham Verghese, M.D., and Jon C. Tilburt, M.D.   NEJM Dec 23 2021

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.1,2

Although clinicians may be tempted to assume that psychological factors account for these symptoms, this large and heterogeneous 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 ultraspecialized health care system that rewards high throughput rather than individualized care.

In recent years, medical centers around the world have been exploring ways to help patients with puzzling ailments who fall through the cracks of established health care systems, reflecting the emergence of “consultative medicine” as a diagnostic specialty.

This emerging specialty, rooted in generalism, aims to integrate the best of the Oslerian diagnostic tradition with the multidisciplinary collaboration and modern technologies needed to tackle uncertain, difficult, or complex diagnoses.

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The doctors reported first. The nurses seemed to be excluded. The hierarchy of influence limited the discussion.

Our job as advocates was to deepen the analysis of both the problem and possible solutions.

Our team at RCM Health Consultancy Inc. (RCM) led by Raymond Rupert, patient advocate, was fulfilling the role of the advocate in representing the rights of our client ( the patient) to access timely and quality care in order to achieve the best outcome possible.

We began to understand that the hospital team did not have a plan. Their actions were entirely reactive. There was chaos. They were traumatizing the patient. They were confusing the family. They were not advancing the care.

When we started to ask questions about their actions, it was clear that these questions were not welcome.

But our job as advocates is to ask questions, to go deeper in terms of the analysis of the root cause(s), to bring new ideas to the table, to introduce positive strategies used in other hospitals and universities.

That was unfortunately not welcome. In fact, our work as advocates was seen to be disruptive.

But we realized that to advance the quality of care in this case, it was necessary for us to be disruptive when in fact we were deepening the analysis of this case with the objective of achieving the best outcome posssible for the patient.

So we have settled into our role as being perceived to be disruptors of a fragmented process of care that needs to change in order to protect the rights of the patient to be the best outcome possible.

Raymond Rupert, patient advocate and healthcare consultant.

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