Buddha once said “a dog is not considered a good dog because he is a good barker. A man is not considered a good man because he is a good talker.” I would take it a step further and say “a doctor is not considered a good doctor because he is a key opinion leader.” No. The essence of a good dog is loyalty. The essence of a good man is his moral character. And, the essence of a good doctor is his ability to heal the sick and restore health. This can’t be done without holding the patient’s interest paramount. Patients and the concerns of patients are the core element around which medicine is organized. Without patients, there is nothing for medicine to address. Without treatment approaches that restore health, or failing that, improve patient health, medicine becomes a meaningless exercise in capitalism. How do we ensure that patient’s interests come first in treatment guidelines?

An obvious way is to include patients or their treating physicians on panels making decisions about patient health.  Neither the IDSA guidelines panel of 2006 nor the guidelines hearing panel were representational because neither patients nor their treating physicians were given a seat on the panel.  The gulf between the IDSA and Lyme patient is deep and wide.  Over 80% of patients responding to the CALDA survey of 3,600 patients said that they would not see a physician who treated in accordance with the IDSA guidelines.  Wow!  Talk about a disconnect?!  Thomas May , the author of Bioethics in a Liberal Society frames the issue: “When the assessments of “better” from competing perspectives conflict, which values, or whose values should frame the assessment that decides “better” or even “appropriate” treatment?”.

Guidelines can prohibit, permit or require.  But in a democracy, healthcare is bounded by the political rights of individuals to liberty–the right to make the decisions that determine the course of one’s life.  In medicine this is called respecting a patient’s right to make autonomous decisions. When  science is evolving and uncertain, guidelines should neither require nor prohibit, but instead should outline choices—or what is permissible.  According to Thomas May “the “permissible” covers those behaviors that are neither prohibited nor required but are left to the judgment of the individual.”

Attorney Sarah Rosenbaum, Chair of the Department of Health Policy at George Washington University School of Medicine and Law puts it well:

“[I]n those situations in which an otherwise applicable treatment guideline is considered inappropriate based on the evidence, the ‘default’ standard of treatment must be covered treatment that reflects individualized medical judgment, not no treatment. “

In a democracy, when it’s a question of opinion, the individual decides.  It’s liberty over dogma, any day of the week and that dog will hunt.

You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.