Drs Groopman and Hartzband, in Your Medical Mind, reference the phenomenon of ‘creeping paternalism’ in medicine. How true.
By the time I was in training, paternalism was discredited but had not disappeared. It was no longer considered standard to hide a cancer diagnosis from the patient, for example. And, over the 35 years I have been in practice, there has been a tectonic shift away from the (usually male) physician making decisions for the patient who ‘followed his orders’ to the (gender unspecified) clinician making medical decisions jointly with an informed patient.
As the husband and wife authors point out in the excellent book, a new form of paternalism is on the rise. It is an insidious process and not well recognized. Instead of individual physicians telling their patients what to do, patients and their medical providers are now both ‘managed’ by guidelines and recommendations and algorithms, some of which are allegedly evidence based, but none of which should be allowed to supplant a process of education, discussion and decision making that includes the patient.
The mantle of ‘evidence based best practices’ excludes the following problems with guidelines and recommendations that are hardly as robust as they are often presented:
- The data is not free of bias. Professionals, often with a financial or professional stake in the outcome, select and exclude studies and determine criteria for significance, a process which inevitably introduces bias.
- The data is incomplete and inconsistently relevant. Studies tend to be done on carefully and narrowly defined populations that excluding the elderly or those on other medication or with other medical problems, quite different from the patients most providers treat. In addition, the guidelines are written to describe the average patient from the study group and to minimize or hide the variation that existed within the study group. The individual patient may be quite different from the average patient in the study.
- The data is ephemeral. About 20% of guidelines are reversed after 2 years and almost 50% after 5 years. The American College of Physicians recommends that all guidelines should expire automatically at 5 years.
- The guidelines present a misleading false unity. They are generally a ‘consensus’ view of a collection of experts, charged with creating one public recommendation, and - by definition - hiding the variations in opinion and approach among the experts, or dissenting views.
- Finally, the studies assume that the evidence makes the decision. At best, there is a notation or small print disclaimer that patient variation and preference should always be taken into account.
Despite these significant failings, I believe the process of marshaling and using the best available evidence for our medical decisions is necessary - as long as we never lose sight of the potential failings of the evidence and the fact that the patient’s preferences are the ‘secret ingredient’ in the soup, the piece that allows the evidence to be used properly.