Self-Diagnosis: A Discursive Systematic Review of the Medical Literature

Annemarie Jutel, RN, PhD

Disclosures

J Participat Med. 2010;2:e8 

In This Article

Abstract and Introduction

Abstract

Objective: To evaluate the beliefs about, and discursive construction of, self-diagnosis from a medical perspective.
Design: Thematic review.
Data sources: Articles from clinical journals in the PubMed database discussing self-diagnosis.Results: Thirty-nine articles were included in this study. Of those, 31% (n=12) found self-diagnosis to be reliable and desirable; 23% (n=9) found it to be unreliable, yet to be sought after, and 28% (n=11) found it neither reliable, nor desirable. The remainder of the sample (n=6) had mixed views, including two articles which despite finding self-diagnosis to be reliable, refuted nonetheless its desirability.
Conclusions: The predictive value of self-diagnosis is not the only factor in that medical researchers consider when determining its desirability. Self-diagnosis presents complex challenges to both the doctor and the patient, as it simultaneously threatens medical authority, and strengthens the potential for self-care, compliance and convenience.

Introduction

Hippocrates wrote that, "…if [the doctor] is able to tell his patients when he visits them not only about their past and present symptoms, but also to tell them what is going to happen, as well as to fill in the details they have omitted, he will increase his reputation as a medical practitioner and people will have no qualms in putting themselves under his care.[1 (p170)]" His words underline the important role of diagnosis in confirming the professional status of the doctor and in framing the doctor-patient relationship. Diagnosis is at its heart: providing a rationale for the consultation, confirming the authority and prestige of the medical profession, delegating the responsibility for labelling an illness, and in our contemporary era, providing access to a range of resources. The diagnosis is generally a prerequisite for treatment, an imperative for reimbursement, an authorization to deviate from expected behaviors, in sum, a legitimating force.

Yet, there have been recent assaults on the diagnostic role of medicine. These come from all angles. The lay social movements advocate for diagnosis and recognition of conditions often refuted by the medical institution.[2] Avid commercial forces have been eager to tap the modern patient's increased access to previously privileged medical information, seeing in self-diagnosis an excellent avenue by which to promote particular conditions (and by extension their concordant therapies).[3]

Being unwilling to be diagnosed by a doctor is not a new phenomenon, for, just as Hippocrates described the importance of the medical diagnosis, so too did he describe the unruly patient reluctant to submit to medical care. He questioned their resolve, "Although they have no wish to die, they have not the courage to be patient…" He wrote, "Is it not more likely that they will disobey their doctors rather than that the doctors…will prescribe the wrong remedies?[1 (p142)]" He emphasized the knowledge gap between lay person and doctor: "…the symptoms which patients with internal diseases describe to their physicians are based on guesses about a possible cause rather than knowledge about it. If they knew what caused their sickness, they would know how to prevent it.[1 (p145)]"

And, today, lay people do know more about what causes their illness. Clinical decision-making has changed its locus, according to Nettleton.[4] The lay person who consults the health care professional is no longer the submissive and compliant "patient," rather, an expert partner who brings his or her experience of illness to the differentially specialized medical practitioner. Medical knowledge has escaped (e-scaped), flowing as information through myriad electronic networks and Internet sources, enabling patients to access and interpret information about disease well in advance of their encounter with the doctor. Access to formal medical information is no longer confined within or controlled by medical institutions. Data from the Health Information National Trends survey in the US confirmed that only 10.9% of US adults go to their physicians first for health information, with almost 50% (48.6%) using Internet resources as their first port of call.[5]

Medicine itself has recognized that self-diagnosis may be in the public interest. For example, the current influenza pandemic management relies upon people deciding for themselves that they have the flu, then staying away from the doctor, and, in the absence of risk factors or complications, waiting out their infection.[6] This direct delegation of the medical authority to diagnose is of sociological interest. It is not the legitimacy of this delegation that is in question, or the failure to accept self-diagnosis for other afflictions. It is, rather, of interest to explore how medicine accommodates this reassignment of its previous role-defining task of diagnosis.

In order to understand this process, I have undertaken a review of a sample of medical publications which discuss self-diagnosis in order to determine the contexts in which diagnosis by the lay person is discussed, and the elements which influence medicine's support or alternatively, its opposition to the phenomenon.

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