You may recall my examination earlier this month of a paper by Johnson and Stricker published in the Journal of Medical Ethics. In my view, it was not a terribly well-argued or coherent example of a paper on medical ethics. Now, judging from an eLetter to the journal from Anne Gershon, the president of the Infectious Diseases Society of America (IDSA), there is reason to question the factual accuracy of that paper, too. The Johnson and Stricker paper promised an exploration of ethical issues around an antitrust investigation launched by the Connecticut Attorney General examining the IDSA’s process for developing guidelines for Lyme disease. In particular, Johnson and Stricker suggested that conflicts of interest led the IDSA panel to improperly exclude “chronic” Lyme disease from their disease definition and treatment guidelines.
It’s true that IDSA has a horse in this race. However, as I noted in my earlier post, so do Johnson and Stricker. And unlike Johnson and Stricker, IDSA president Gershon seems to have a good handle on how to frame coherent and persuasive arguments.
From Gershon’s eLetter:
This article is riddled with inaccuracies and misleading information. The article is the latest salvo from a small but vocal group of physicians and patients who attribute a wide range of vague symptoms to what they call “chronic” Lyme disease. To treat “chronic” Lyme infection, this self-described “Lyme-literate” group promotes the use of long-term antibiotics – often delivered intravenously for months or even years. The cost of this treatment must be borne by patients themselves, leading a discerning person to question the authors’ interest in the real reason why they want the treatment guidelines changed.
Blinded, randomized controlled trials show that long-term antibiotic treatment is not effective for any condition described as “chronic Lyme” – a condition that currently has no consistent diagnostic markers. Far worse, this treatment has been shown to be extremely risky, potentially leading to fatal infections, serious drug reactions and fostering development of life-threatening drug-resistant superbugs. That this group continues to use its assaults on the IDSA and its Lyme disease guidelines as a platform to promote a not only unproven but expensive and potentially dangerous therapy is, we believe, clearly unethical.
Central to medical ethics is the welfare of the patient. The patient has expectations of the health care provider based on the health care provider’s specialized knowledge. Accordingly, the health care provider has an obligation to ensure that his or her treatment of the patient is guided by the best available knowledge. As a professional community, physicians recognize that the best knowledge comes from blinded, randomized controlled trials. Thus, they have a duty to take account of such knowledge in their efforts to help their patients and to avoid causing them harm.
Gershon suggests that setting aside this duty to be guided by the recognized body of medical knowledge in favor of the “physician autonomy” Johnson and Stricker seem to prioritize is unethical.
[T]he authors seem intentionally to confuse Lyme disease – a proven and highly treatable illness – with “chronic” Lyme infection, an unproven condition that a small group of doctors may provide as a “diagnosis” for patients with vague but often serious symptoms. There is no solid evidence of the existence of “chronic” Lyme infection. Although we do not doubt that there are patients who initially were treated for Lyme disease infection and subsequently have ongoing, vague symptoms, we are concerned these patients likely are suffering from a different or new illness and are receiving potentially dangerous “treatment” rather than being evaluated, properly diagnosed, and treated appropriately.
This nicely illustrates one of the other harms that may come from misdiagnosis or mischaracterization of an illness. Not only is the patient subjected to a treatments that, from the best data the medical community has, cannot be expected to work and can be expected to cause harm, but the patient’s actual condition is not recognized, thus preventing the patient from getting treatment that might actually help.
There is a harm of commission (in giving the patient an inappropriate and potentially harmful treatment) and a harm of omission (in failing to identify the treatment the patient really needs).
As to Johnson and Stricker’s charge that the IDSA panel cherry-picked the medical literature to support its preexisting conclusions, Gershon writes:
The IDSA Lyme disease guideline panel spent months scouring all of the Lyme disease research. Specific studies were not “selectively ignored,” but in fact stringently reviewed along with all of the other research. Based on widely accepted principles of evidence-based medicine, some studies were determined to lack scientific rigor, and were therefore not used as a basis for treatment guidelines.
Unless we accept Johnson and Stricker’s suggestion that physician autonomy is the good that should be prioritized above all others, it seems completely appropriate that the expert knowledge that informs treatment decisions be knowledge that meets the methodological standards recognized by the medical community — in other words, that the guiding knowledge be recognized as knowledge by the community, rather than as claims that haven’t been sufficiently tested or proven.
Gershon’s letter presents more detailed responses to other claims Johnson and Stricker make about the IDSA and their Lyme disease guidelines. But these passages are enough for us to see her central idea, that their paper which purports to be about medical ethics seems itself to fall short of the central tenet of medical ethics, First, do no harm.