Abstract
Keywords: Participatory medicine, e-patients, shared decision making, health information, paternalistic medicine, doctor’s orders.
Citation: Graedon J, Graedon T. Fighting over homework: an e-patient debate. J Participat Med. 2014 Jan 8; 6:e1.
Published: January 8, 2014.
Competing Interests: The authors have declared that no competing interests exist.
A few months ago, the American Heart Association and the American College of Cardiology released new guidelines on when statin-type cholesterol-lowering drugs should be prescribed. Normally, guideline recommendations go almost unnoticed except by the physicians who are directly affected. But in this case, a firestorm of controversy erupted because key cardiologists disagreed with the changes being recommended.
The New York Times ran an online forum capturing various viewpoints under the headline “When Medical Experts Disagree.” We were invited to share a “People’s Pharmacy” perspective titled “Do Your Homework.” We pointed out that statin side effects can be debilitating and that 140 healthy people need to take a statin drug for five years to prevent one heart attack or stroke. The main point was that e-patients who do their own homework are in a much better position to weigh the benefits and risks of medication. Our conclusion: “Take charge of your health!”
There were a lot of thoughtful comments from people who support the idea of participatory medicine. Casey suggested that we should “think of our relationships with our doctors as a partnership.” Carla B. asked, “Do you do any homework before buying a car or a new appliance? How could you do any less when it comes to your own well-being?” They were responding to several other people who surprised us by objecting to the idea of doing their own homework.
Clara said: “If I had wanted to study medicine, I would have gone to med school. Ideally, I want to be able to trust my physician. You need to be a physician yourself to negotiate the maze of procedures and drugs.”
Leah added: “If I have to do my own research to find out what is best for me, what role does the doctor play? I assume that as a professional, she will recommend what she thinks is best. Are we encouraged to do Google searches when we contract with lawyers or accountants? We are paying for the expertise of these professionals. They are supposed to know more than we do!”
Norman offered still another reason not to do your own homework: “You are giving patients an impossible burden. Doctors go to medical school for 8 years, and study with the best minds in the world, in order to make medical decisions…Eugene Braunwald, the author of Braunwald’s Cardiology, said that when he gets sick, he doesn’t try to diagnose himself. He finds a doctor he can trust and follows that doctor’s advice. If Braunwald can’t manage his own disease, how can I?”
As much as we would like to believe that most people are ready to embrace the principles of participatory medicine, the truth is probably quite different. Our fledgling movement of participatory medicine is still smaller than we may hope. The majority of health care professionals and patients still subscribe to the idea that “doctor knows best,” and that patients should “follow doctor’s orders.”
Doing your own homework can be hard. Making sense out of a long list of drug side effects is challenging even for health professionals, not to mention patients. Assessing drug effectiveness is even more complex.
It’s hardly surprising, then, that many people feel uncomfortable with the idea of active patient engagement. Doctors who are not used to this concept may feel annoyed or even threatened. And patients accustomed to a passive role may find it hard to take more responsibility for their own health care.
There are times when even well informed activated patients may find a health crisis overwhelming and want the health care team to take over. We should not judge or belittle people who adopt this attitude, whether for a limited time or for an indefinite period of illness.
Despite the pushback, though, we believe that it is essential for most of us to become better informed about our conditions and treatment options. Adverse drug reactions cause a great deal of disability and death each year. A review in American Family Physician[1] suggests that up to 15 percent of older patients suffer from adverse drug events, half of which could have been prevented.
In our time-pressured health care system, prescribers, and dispensers have little opportunity to explain the symptoms patients should watch for to alert them to potential drug reactions. That is why we still think there is no substitute for doing your own homework.
References
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Pretorius RW, Gataric G, Swedlund SK, Miller JR. Reducing the risk of adverse drug events in older adults. Am Fam Physician. 2013; 87(5):331-6. ↩
Copyright: © 2013 Joe Graedon and Teresa Graedon. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
How are those who do not want to do “homework” regarding their physical complaints/problems going to know if they can “trust” the doctor they are using? He/she has numerous certificates on the office wall? He/she/ holds their gaze when speaking? The doctor gives an answer (some response) to questions? Someone “recommended” him/her? The complaint for which they go to the doctor “goes away”? In actuality none of these guarantees that an individual patient is in good health. But for those who do not want to understand how their body works nor what is known now (and is continuously discovered) to maintain/regain health as one ages, such a physician who directs treatment *after* the fact of a complaint is all they have to go on.
Nicely done
Thanks for this great article. Personally I struggle sometimes with how to address the very valid concern that not everyone wants to or can “do their homework” as I am out there in the world encouraging systems to re-design themselves to make more room for patient autonomy.
We do seem to be valuing autonomy more and more in health care, and this post wonderfully has us stop and think about whether that is always of benefit — or more subtly, how to increase autonomy without losing the professional’s expertise.
It can be useful to reflect on medical ethicist Robert Veatch’s four models of provider-patient relationship: 1. physician as dispassionate consultant/plumber/engineer who only provides information and then relies on the patient to decide, 2. the physician as paternalistic “priest” deciding on patient’s behalf, 3. physician as colleague in which both are perhaps falsely considered equals, and 4. the covenant relationship, in which both are accountable and responsible but in different ways. There are times when one model is preferable, and none are entirely bad all the time. As engaged as I am in my health, I certainly hope someone will make a decision and treat me if I’m unconscious in the ER.
Veatch also presented a future in which autonomy is the top priority of our relationship (Patient, Heal Thyself) and the subsequent reaction to this position (http://www.nejm.org/doi/full/10.1056/NEJMbkrev0806961) shows how we’re not all comfortable with that prospect.
I think this topic deserves a lot of discussion, study, and strategies for increasing engagement without losing the much needed skills of the professional.