The Patient Was…

Buzzwords  —  words or phrases that purport to capture and represent broad ideas or concepts in specific contexts   —  are common in many areas of life. They may appear as jargon, media soundbites, advertising taglines, political statements, and other guises.

Medical care, like many other fields, is not immune to the power and seduction of buzzwords. Some are extremely useful as they represent a vast amount of important ideas and information in a simple phrase. Cardiologists, for example, love the phrase “Time is muscle,” because it clearly and succinctly represents all the scientific data showing that any delay in opening a blocked artery in a patient suffering a heart attack means the death of more heart muscle.

A fairly new buzzword in medicine is Shared Decision-Making.

It goads me, and the reasons are that it really isn’t anything new, and as currently described and promoted it seems to miss a central element in how patients and doctors now interact, and what might be a better focus.

The definition of Shared Decision-Making seems self-evident to me, yet in its formal designation it has to be defined by official bodies.  These definitions highlight that it is an interactive, collaborative process that focuses not only on scientific evidence but on patients’ preferences, goals, and values. Believe it or not, there are hundreds of papers and articles on this, and the most respected professional societies have even published guidelines on it.

So what’s new here?

Shared Decision-Making always incorporated these features. They just played out in different ways. The major contrast of current Shared Decision-Making with more traditional decision-making is that doctors were often more prescriptive in the past; but patients were never removed from the equation. The patient could always, and often did, say “No, I’m not doing that.” And if the patient didn’t actually articulate that choice, he or she could demonstrate it by their behavior.

Many of the reasons why patients didn’t follow “doctor’s orders” then, and still don’t do so now, are well known. Perhaps they are better articulated now, perhaps patients are more likely to express them now in discussion rather than behavior, but that is a matter of better communication, not a new and different process. Some of these notions will not come up in discussions between patients and their doctors for obvious reasons, but they will affect patients’ choices and behavior.

Why don’t patients follow physicians’ advice? The long list of reasons could include:  

I don’t believe you.

I don’t trust you.

You’re recommending this for your benefit, not mine.

I’m afraid.

It will hurt.

I can’t afford it.

I heard there is a better treatment.

I read bad things about this.

My insurance company says it’s not indicated.

I heard this is dangerous.

I don’t understand why I have to do this.

Etc., Etc., Etc…….

In the “old” days, when doctors were generally more authoritarian, issues of trust and belief were less prevalent. The interface between patients and doctors was not a computer screen but a more direct interaction. The notion of a corporate influence on medical decisions, of a third party driving decisions, was essentially unheard of. If the doctor said it, you might not like it, but you believed him (doctors were mostly male). And there weren’t innumerable, questionable sources of contradictory information  —  and often misinformation —  that affected your judgement.

The concept of Shared Decision-Making is basically all about communication, and it isn’t new. The problems, as I see it, are structural or systemic and personal or individual.

The current system of medical interactions with patients does not foster trust or faith. When the doctor interacts more with his or her electronic tools than with the person before them, the patient’s sense of being treated by an interested, caring individual is tested. When the doctor’s examination is cursory, trust is challenged. When time constraints limit interaction with the physician, a patient’s belief in the doctor’s commitment to their health and well-being is shaken.

I don’t have a cure for the systemic challenges and the reality of current medical practice patterns, but I strongly believe that they play a significant role in communication issues around medical decision-making. I only know that when I was in practice, I didn’t interact with a computer in the presence of a patient. I didn’t limit time with patients. My examinations were thorough. I actually physically touched patients, and not through layers of clothing; the intimate nature of a doctor’s touch  —  yes, the laying on of hands  —   helped to establish the unique connection between us. It bred trust, faith, belief.

The personal aspects of Shared Decision-Making are more amenable to improvement than are the current structural or systemic ones. Showing respect for patients’ time is readily achieved without much organizational disruption. Using the permissible intimacy of physical contact establishes a unique relationship with a patient. Small things, like the touch of pulse-taking, the wrapping of a blood pressure cuff, the reassurance of a hand on a forearm, actually have meaningful benefits in establishing the trust and belief necessary for overcoming some of the barriers in coming to agreement on medical decisions.

In an ideal world of Shared Decision-Making, both parties would have equal access to scientific, evidence-based information. Both parties would have equal background and training to understand the intricacies and nuances of proper treatment. In the real world, this is impossible. A patient, unless he or she is trained and educated in medicine, simply cannot have the knowledge and experience of a physician. By his or behavior, though, the doctor’s openness to the patient’s concerns, the willingness to engage with the patient, can be demonstrated.

In my medical school training, only a privileged few of us were permitted to see some of the private hospitalized patients with the eminent faculty physicians who cared for them. We were instructed to never approach a patient too closely unless necessary for a particular examination. Touching a patient’s hand or arm while conversing was forbidden. And never, we were told, touch a patient’s bed; never “invade” their space. I thought it was nonsense even then, an off-putting notion. It was a missed opportunity to share, in some small way, their experience.

I have written before about the dying patient who had seen five more- experienced cardiologists than I, and who steadfastly refused the life-saving surgery that each specialist correctly recommended. He said only that he was too afraid of the operation. Just understanding that allowed me to offer the same opinion as the other doctors, but in a way that the patient accepted. When I asked why he agreed to the surgery when he had refused it five times, he simply said, “Nobody ever put it to me that way before.”

Medical decision-making occurs every day, in nearly every encounter with a patient. It’s always been a shared issue, although there may be ultimate disagreement among the parties. In most instances, the doctor really knows best about the actual medical science, but the patient has his or her own feelings, concerns, beliefs and ideas that properly influence their ultimate decision about what to do. Communication has always been the answer, and we have tools and abilities to make it better.

George Bernard Shaw is credited (incorrectly, according to some) with the insightful observation that “The biggest problem in communication is the illusion that it has taken place.”

We can, all of us, patients and doctors alike, ensure that in medical decision-making, it does in fact take place.