Author + information
- Priyanka Gosain, MD∗ ()
- ↵∗Reprint requests and correspondence:
Dr. Priyanka Gosain, Division of Cardiovascular Diseases, Mount Sinai Medical Center, 4300 Alton Road, Miami Beach, Florida 33140.
As fellows in training, clinical guidelines provide an important foundation for our learning. At this stage in our career, we cannot credibly start an argument with the words “in my years of practice,” and we often have to settle for the thrill of “one-upmanship” that comes from quoting the level of evidence on each guideline recommendation. As a result, each time a new document is published, there is a set of wide-eyed fellows who open the PDF link, with the excitement of children who know they got what they wanted for Christmas. Every time that I apply a Class I guideline recommendation, I envision myself rounding with the number of experts in the field who contributed to that document.
Thus, when the new 2013 American College of Cardiology/American Heart Association guideline on the treatment of blood cholesterol was released (1), I downloaded the risk calculator and entered the outpatient clinic with the confidence that comes with knowledge. And, when a 45-year-old woman came in for her first visit, I stood prepared, armed with my calculator. After navigating the complex algorithm, we reached the part of decision-making that ends with “patient preference.” Instantly, I went from rounding with 50 experts in the field of lipid disorders to rounding with each patient, every one of whom is an expert on his or her own life. Many years from now, I know I will learn more from each of those patients than I would learn from the experts. However, at this stage in my training, in that clinic at that moment, my recommendation lacked the conviction that comes from knowing that a formidable panel of experts would recommend the same treatment plan for her. After our 30-min discussion, she decided not to take a statin. Now, if she has a myocardial infarction, will I be able to tell myself that she made her own decision? Did I explain the benefits of statin therapy? Was my tone appropriate? Did I not dwell enough on the benefits? Did she really understand anything that I told her?
The 2013 guideline for management of lipid disorders uses the phrase “patient preference” 17 times in 4 different contexts (1). The Eighth Joint National Committee panel hypertension recommendations also make continual reference to the same phrase (2), whereas the Seventh Joint National Committee guideline, published 10 years prior, does not use the phrase “patient preference” at all (3). The new guideline on the management of valve diseases uses the phrase 6 times, upgrading it from a Class IIa to a Class I recommendation in some instances (4). Most of these documents start with a preamble that assures the reader that due consideration was given to patient preferences. The recent and deliberate addition of phrases such as “patient preference” to the decision tree has made some of the recommendations nonspecific. The idea behind the gradual change is probably to allow physicians some leeway to practice the art of medicine. However, this approach raises many questions about the inclusion of these phrases and the idea of shared decision making as a whole. How was patient preference determined? Which patients were asked? What were the specific questions? What tools were used to convey information? Is this approach valid for minority ethnic groups that have different cultural values when it comes to seeking medical care? When all other recommendations in the guidelines come from rigorous analyses of mounds of data, is there enough of an evidence base to recommend shared decision making?
Although the idea to shift the spotlight away from the physician and to each individual patient is very noble, it is going to be difficult to include this in a structured guideline format. I need to be able to make a sound decision about the clinical question. How I apply it to the myriad of patients with the same disease is an art that I will master, 1 gray hair at a time.
Our performance standards are moving toward the consumerism adage “the customer is always right.” There is an increased pressure to achieve patient satisfaction. Various decision aids have been designed to inform patients and increase participation in the decision-making process. A Cochrane review of 115 studies concluded that decision aids improve people’s knowledge regarding options and reduce their decisional conflict related to feeling uninformed and unclear about their personal values (5). However, the same review also pointed out that there is very little information about the degree of detail that decision aids need in order to have a positive effect on attributes of the choice made, or the decision-making process (5). Section 3506 of the Affordable Care Act (6) requires that the Secretary of the Department of Health and Human Services establish a program to develop tests and disseminate certificated patient decision aids. The body of literature on shared decision making is relatively small. The onus of decision making, which previously lay solely with the physician, is now being transferred to the patient. We are moving toward a system of consultation that limits the responsibility of the physician to that of effectively laying out the risks, benefits, and alternatives. It is especially difficult when it comes to 2 very distinct groups of patients that we all deal with on a routine basis: the “nonadherent” and the “well-informed.” These patients make the same decision to not take the prescribed medication, but for very different reasons. Do we need tools for physicians to differentiate these 2 groups? Or do we no longer need to differentiate between them, because after giving them the information, we have to respect what they do with it. What about the patient who does not want to participate in this process? Is that a reasonable “patient preference?” If given an option, some people might choose not to take any medications. We do not yet have enough evidence to say what the effect of this approach would be on the population disease burden. When there is so much uncertainty about this approach, it is somewhat disconcerting that the recent guidelines affirm its routine application.
Although there is new recognition of patients being at the center of their own care, the addition of phrases like “patient preference” do not likely change the basic principles of good medicine: communication with patients, knowing them as people, understanding their physiology and family history, and wanting what is best for them. In fact, no decision should be made without taking into account the personal preferences of the patient. However, we should not confuse this personalized care with patient preference. There can never be a guideline that applies to every patient that walks into my clinic. It will also be challenging for patients to gain the same insights that come from years of training by looking at 2-min decision tools or scrolling through web pages. When reading documents such as the clinical guidelines, the question that I want answered by the experts is the same question that patients often ask me in the clinic, even after the most detailed, painstaking discussions of risks and benefits: “What should we do, doctor?”
- Jonathan L. Halperin, MD ()
RESPONSE: “Actually, It’s More of a Guideline Than a Rule”
This quote is from Bill Murray in Ghostbusters, responding to Sigourney Weaver’s seductive advances, while relaxing his rule to “never to get involved with possessed people” (1).
Dr. Gosain has raised important issues pertinent to applying clinical practice guideline recommendations in patient care. Guidelines address diseases, tests, or treatments; physicians must transform them into strategies for patients. Shared decision making demands an awareness of comorbidities and modifiers and a sensitivity to the values and preferences that influence individual choices. These preferences, founded upon beliefs, expectations, and goals, help people balance the potential benefits, harms, costs, and utilities of clinical options in their own perspective (2).
Few clinical practice guidelines provide adequate guidance for patients with specific combinations of diseases (3). And, as Dr. Gosain rightly points out, the evidence supporting the selection of aids to communicate particular recommendations is relatively weak and often compromised by time constraints during patient-physician encounters. More research is needed to enhance tools that inform patients and optimize their ability to share in treatment selections in the light of culture, economics, and the host of other factors that define the context of care.
This is challenging for trainees and senior physicians alike. Although a physician’s clinical experience can hone an understanding of the implications of treatment decisions, it can also introduce considerations that are not contributory to the health of an individual patient (4).
Personalized and evidence-based medicine have in common a need to distinguish patients based upon susceptibility to a disease or response to a specific treatment, so that interventions can be directed selectively toward those who will reap the most benefit, and spare the expense and side effects for those who will not (5). This is broadly applicable across the diagnostic and therapeutic spectrum, but is particularly pertinent to choices involving long-term strategies to reduce risk.
In describing this internal struggle, Dr. Gosain indicates an important stage of professional development. The interpersonal and communication skills that we draw upon to inform and empower patients in shared decision making are fundamental to the physician-patient relationship, as well as to building the trust and understanding that are associated with treatment adherence and mutual satisfaction (6).
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