When We Can’t Help

February 2, 2021

While I can only speak for myself, common sense would suggest that those who go into medicine set out with the intent of bringing about positive change in others’ lives. At the intersection of science and humanism, we eagerly anticipate novel developments in diagnostics and therapeutics that will expand our arsenal to identify and manage disease. Consequent to this, many of my most satisfying experiences as a young doctor have been those in which I feel I successfully married my now-over-a-half-decade of post-graduate training with the ability to mitigate suffering experienced by another. Sometimes these episodes feel more heroic, others more quotidian. Indeed, I think with satisfaction on the times I surprised myself with my own competence: I made the timely and accurate diagnosis of an inherited hemolytic anemia. I correctly identified the etiology of severe hypercalcemia in an infant with profound failure to thrive and hypotonia. I raised concern for systemic-onset juvenile idiopathic arthritis in a patient with daily fevers and an evanescent rash, and I recognized and mitigated the sequelae of serotonin syndrome in a patient with significant polypharmacy. At the same time, I find simpler ailments with more straightforward cures no less satisfying to manage: a child with a significant asthma exacerbation who breathes more easily only minutes after the first dose of steroids and inhaled bronchodilators, the child whose cellulitis washes away within hours of the first dose of antibiotics, the child with significant dehydration who feels good as new after a night of IV fluids.

The trouble I’ve found with a career in medicine is that these cases seem to be the exceptions, not the rules. I had to reflect deeply to conjure these memories of success and clinical acumen. When thinking on my time in residency, the stories that come to mind more readily – and weigh more heavily on my psyche – are those in which healing was not possible in the context of the doctor-patient relationship. The most obvious instance of this is somehow the least demoralizing: when we have identified a disorder but are powerless to treat it. Multiply relapsed malignancies, life-limiting congenital anomalies, and irreversible multi-organ failure come to mind. While these cases are inevitably tragic, somehow they carry with them a sense of inevitability that contextualizes them and hangs them on the same hook with my own mortality, the inexorable passage of time, and the inescapable encroachment of advancing age. They are to be mourned, but in the end, our ability to use medicine to manipulate physics, chemistry, and biology to forestall disease and prevent death is, in all cases, temporary at best. Moreover, these ailments carry with them an intrinsic promise of change with advancing science, even if conditional: acute lymphoblastic leukemia was once universally fatal and is now the poster child of modern oncology, HIV/AIDS is no longer the specter of death it was mere decades ago in a world full of PrEP, PEP, and HAART, and inflammatory bowel disease need not lead to growth failure, profound anemia, and debilitating abdominal pain. The progress of the past promises hope for the present.

No, the most wearisome cases fall broadly into two categories. First, there are those in which the treatment is known but personal, institutional, and societal resources are insufficient to connect the treatment with the patient – or to prevent the condition in the first place. The child with malnutrition in a resource-rich nation, the child who has a vaccine-preventable illness due to parental reluctance surrounding vaccination, the child who experienced abuse, whether physical, emotional, or sexual, and the child in clear psychiatric distress but whose caregivers or medical team refuse or fail to recognize their mental illness all come to mind. I don’t have a hook on which to hang the child whose ribs did not need to be broken, whose growth is forever stunted due to neglect, whose suicide may have been prevented had the world been more accepting of their gender identity. This is because the lever of medical interventions has an inadequately positioned fulcrum to engage in the heavy biopsychosocial lifting necessary to fix each of these ailments: I can counsel parents regarding the safety of vaccines but cannot undo decades of brainwashing by conspiracy theorists, I can arrange for foster care but cannot undo the damage brought about by the intergenerational transmission of trauma, and I can validate the feelings of the adolescent who’s been bullied regarding his gender-non-confirming behavior, but cannot rid each of his classmates of homophobia. Pathology is present, and we can trace its origins, but we are past the point of reversibility. It is difficult not to wallow in the could-have-beens.

Second, there are cases in which there is no identifiable cause of a patient’s symptoms, either physically or psychiatrically, and we are left with such labels as “functional” disorders and “medically unexplained symptoms”. While it is clear that functional disorders exist as diagnosable and treatable entities, explaining this to patients and families in a way that does not come across as invalidating but nevertheless communicates our pathophysiologic understanding of the disease process involves a tightrope balancing act in which a gust of mistrust or torrent of miscommunication too often sends me tumbling into the abyss of a failed therapeutic relationship. As COVID-19 rages on and admissions for patients boarding awaiting placement at inpatient psychiatric facilities have mounted, so too have I, anecdotally, seen a surge in patients experiencing functional symptoms; as a resident generally restricted to the acute, inpatient setting, I have frequently felt improperly situated to bring about true relief for what truly ails these patients.

What I want to say: “Your symptoms are real, and our highest suspicion for what’s causing them is a functional disorder, in which there is misfiring between the brain and the body, so certain symptoms are produced without an identifiable pathology that’s causing them. If things change, we can always do more diagnostic tests or imaging, but right now we don’t think the risk of those interventions outweighs their benefit.” What is too often heard instead: “You are fine, and this is all in your head. Just get over it.” Analogies help: “It’s a software problem, not a hardware problem: it’s an issue with the way your brain is communicating with your body and not with the body parts themselves.” Too often, though, the fear of a missed “medical” diagnosis leads to over-testing and overmedicalization, with patient and provider alike expending considerable energy in scrutinizing ever-less-likely diagnostic possibilities while the road to healing by embracing the functional diagnosis rests as the road less traveled.

At times, these are the most difficult cases: when the medical team has a high suspicion for a functional disorder but hasn’t yet found the language to communicate this in a way that the patient and family can hear, and so the patient continues suffering from maladies that a typical medical approach to localize the pathology and excise it or medicate it simply cannot address. And so, a predictably saddening pattern emerges in which patients seek care from an ever-wider array of consultants, hoping to find the pill that will finally be the panacea, when what the patient needed all along was a steady primary care doctor, a therapist, a life coach, and a structured home life in which a return to function would be possible. But our system is not built to accommodate such wraparound luxuries: instead, we’ve prioritized acute care and specialist expertise. While these have their place – and I am soon pursuing training to be a sub-specialist myself – I have to wonder if greater societal investment in community-building, in programs designed to promote racial and economic equity, in social determinants of health, in mental health, and in primary care might better serve the needs of these patients who are clearly suffering but whose abdominal pain is not from appendicitis and whose sudden arm weakness is not from a stroke.

We must, of course, at the same time remain humble. The patient with functional abdominal pain is not immune to inflammatory bowel disease, nor is the patient with psychogenic non-epileptiform events incapable of sustaining an electrographic seizure. Our differentials must remain broad, and our capacity to listen must remain keen. But with health and wellness for all as the objective, it’s clear that we need continual reimagining of the way we view symptoms and the path to their resolution. Symptoms are rarely exclusively “medical” or “psychiatric” or “functional”, but rather exist at the dynamic nexus that represents the interplay of each of these forces. The patient with lupus is capable of having lupus cerebritis that requires intense immunosuppression and depression unrelated to autoimmunity that would be best managed with therapy and an SSRI, not steroids and hydroxychloroquine. Distinguishing between the two, however, requires patience and openness to nuance, which our capitalism-molded health system has made scare. There is practically no situation in which retraining the mind cannot benefit the patient, even as appropriate medical treatment exists in tandem – so the suggestion of invoking the expertise of our mental and behavioral health providers should be met with an eagerness to embrace their tools at retraining the mind-body connection and not with suspicion that the doctors think the patient is “crazy”. Figuring out how to communicate this in empathetic and culturally sensitive ways, then, is our responsibility. I hope to retain the humility and patience to continue this tightrope walk towards healing with my patients and families – only in this way will the cures brought about by anti-infectives and anti-inflammatories be matched by the cures brought through attention to functional symptoms.

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