Guest column: The orphan patients

Colleagues:

At age 80 and as a newly retired internist, I welcome the opportunity to share a concern about our profession that has been growing over the last few decades. I call it the “orphan patient” problem.

I define an “orphan patient” as a patient who either cannot find a family physician (FP) who will accept them, not because the FP has a full practice, but because of the patient’s medical conditions, or patients have an FP who is unable to find an appropriate specialist to help the patient manage specific healthcare needs.

This practice of “cherry picking” patients has become all too common in all specialties, but especially among FPs. In my own practice as an internist, I found this problem is most common for patients with a diagnosis of chronic fatigue syndrome (ME/CFS) and related disorders; however, the orphaning of patients is by no means limited to these conditions and is a problem across all specialties.

I recognize that every physician has not only the right but also the duty, to refuse to accept cases for which they are not competent. However, that does not mean FPs have the right to exclude patients from their practice because they have a condition they do not wish to treat or care for.

Nearly all patients, regardless of any chronic issues, need a family physician to gain access to secondary or tertiary medical resources. When FPs select patients based on certain conditions they may have, some patients are inevitably not only left as orphans, but are also unable to access any further medical care or assessment.

My concerns are twofold. First, I have been repeatedly dismayed to hear that patients who were referred to me for assessment of fatigue had been told to find another doctor because their current physician “does not see chronic fatigue patients.” Additionally, I’ve had numerous patients referred to me, seemingly for consultation and diagnosis, only to find that their FP had the expectation I would become the patient’s primary care physician-because, in the words of one referring physician, “I do not know anything about CFS.” I find this concerning.

My second concern is about specialists (mainly, but not exclusively, general internists) who refuse to see CFS patients. Though FPs can easily (and possibly best) manage the patient’s ongoing care, complications and diagnostic puzzles that come with CFS should be managed by internists. When I was closing my practice, I found it nearly impossible to find internists willing to be “back up” specialists for FPs caring for CFS patients. I find this equally concerning.

Both of these situations are not a matter of physicians declining to see patients who have conditions for which the physician lacks competence in treating. These patients, regardless of how complex their medical needs, still have the same basic care requirements as any other patient and deserve an ongoing advocate who will seek appropriate secondary and tertiary consultations for them when needed-no one else in the healthcare system can do this better than FPs. Moreover, when secondary or tertiary care is required, patients and their FPs deserve to have specialists who are willing to provide support in ensuring good patient care.

In the case of treating CFS, an internist’s diagnostic assessment may well be indicated, but the ongoing management of CFS can be easily and possibly best done by any FP. FPs have all the skills and tools needed to be the primary care physician for patients with CFS and any general internist is able (or should be able) to diagnose CFS and provide guidance on management.

I have used CFS as the model for my discussion because I know it so well from my own practice; however, the principle remains the same for any other conditions any FP or specialist may not like to see. For the patient, the problem is most severe when it is the FP who refuses to care for them because, in essence, the FP is both the gatekeeper and advocate for all further secondary and tertiary health care. Without an FP, the patient is truly an orphan, but all specialists have an equal duty not to ”orphan” the FPs who need their expertise.

The question that remains is how, in good conscience, can a physician refuse to care for a patient on the basis on not wanting to treat a certain condition? If any physicians discriminated in a similar way against patients of various religions, sexual orientations and identities, ethnicities, or any other identifiable groups, they would face discipline very quickly. Why do we allow this kind of diagnostic discrimination?

I believe that addressing this orphan patient problem together as a profession will not only benefit many patients enormously, but also enhance our image greatly amongst Albertans.

Yours sincerely,

A. Voth, MD, LMCC, FRCP, (Can) Fellow ACP