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.
Paternalism or profit
This comment was posted on 11/08/2011 by kristin:
Paternalism or Profits?
Speaking of inaccurate treatment protocols, have you seen the documentary "Under Our Skin" about Lyme disease? Apparently, the insurance companies got control of the preparation of the treatment protocols for Lyme disease in Massachusetts and now those inadequate and inaccurate protocols are being forced on doctors across the country. Doctors, experts in the treatment of Lyme disease, are under attack for treating "off-protocol". I have many many friends who received inadequate treatment, some now permanently disabled, unable to afford the expensive treatment needed to get well. In Europe, Lyme disease is treated much more aggressively. What do we to get rid of these horrendous inaccurate treatment protocols?
Also, I am not sure I'd call it paternalism that is responsible so much as profit for insurance company shareholders driving this and similar problems.
Reply to comment
This was my reply to kristin on 11/08/2011"
Lyme issues (slightly OT)
I agree that insurance companies and irrational financial incentives are the cause of many of the problems facing health care policy and economics in the US. But I think that citing Lyme here conflates two separate issues, to the betterment of neither.
First, I think it is a stretch to call 'Under Our Skin' a documentary, as it clearly is designed as advocacy for a specific position regarding the existence and status of chronic Lyme.
Second, the insurance companies ARE largely in control of setting policies about what they cover and under what circumstances. They have been since insurance was invented, and this practice is not limited to health insurance. Read your homeowner's or automobile liability policies carefully to see how they determine what is covered and what is not. These are economic/actuarial decisions. For example, until recently, screening colonoscopy was not covered. There are too many examples of irrational policies to list here.
Third, the insurance companies did not get control of the Lyme protocols. These protocols, for better or for worse, are generated as part of a complex process. The bigger problem is the influence of pharma and device makers. My OP should make it clear that I am not a protocol worshipper. In fact, I think every protocol should sunset at 5 years and be pre-pended with a large, red bold note that says 'Quality care demands that this protocol be used judiciously, and adjusted to fit individual patient circumstances.'
Fourth, many of the doctors attacked in Massachusetts and Connecticut were attacked for treating patients they had never met (and neither seen nor examined) but whom they were treating (and getting paid for treating) based on lab tests sent to a lab in which they had a financial interest.
Fifth, it is not clear that one can equate European Lyme with the illness in the US. The tick is different, and the subspecies of Borrelia is different.