As we continue to improve and enhance our ability to foster shared decision making, the language we utilize to discuss treatments becomes important. Presently, we use the terms “risks” and benefits” in our conversations. However, risks are often unknown, and the benefits seem to be a given. And in actuality, neither statement is valid.
When communicating risks, it is essential to make the patient aware that there is a possibility of a harmful outcome. Concerning benefits, since they are not absolute, we need to ensure we clarify the likelihood of a benefit. Furthermore, a benefit may not translate to the desired outcome. For example, a knee replacement may lead to improved mobility but not to the physical level desired, such as running a marathon.
To present all options to the patient, we must translate both components into numbers to help those we serve better understand our conversations, allowing them to make more informed decisions. One way to accomplish this goal is to discuss the number of people needed to treat to identify a defined benefit (once again, the benefit might not be the desired result) and the number of people needed to treat, resulting in harm, based on the current literature. It is the difference between these two facts that can advance a coherent understanding.
We must also remember that harm does not occur as an absolute as there are “degrees” of injury, and the converse is true as there are “potentials” of benefit. Routinely, patients would question me regarding the “chances” of harm and compare them to the “possibility” of the desired outcome. This line of reasoning is a much-improved way of communicating. Unfortunately, this relies on having appropriate statistics from the literature, which may not exist and may not be consistent between studies, thereby requiring discussion.
As an Internist, an example that frequently occurred while in practice was the conversation concerning anticoagulation for atrial fibrillation. The risk of harm of having a stoke with atrial fibrillation is 4 people out of 100. With anticoagulation, the numbers decrease to 2 out of 100. However, on anticoagulation, the possibility of significant bleeding is 1 to 3 people out of 100. Thus, there are numerous ways to review this information. The chances of a stroke without therapy is still higher than the possibility of a bleed with treatment. Although, the likelihood of a stoke while on treatment is about the same as the bleed probability. Unfortunately, each event lives on a spectrum. What is the feasibility of a severe stroke if I have one, and what is the likelihood of a significant bleed? One patient might decide that a stroke is worse than a bleed, yet a different person might think the exact opposite.
Truthfully, there is no single correct answer, thus resulting in a more complex conversation. Unfortunately, human nature drives us to want to simplify the situation when the right conversation needs to remain complex. Our goal is to illuminate the discussion by disentangling and clarifying the options, and not by minimizing the facts.
Language and explanations guide decisions. Thus, choosing our words and leaving space for conversation is paramount for shared decision making. Let us move towards discussions that embrace “chance of harm” versus the ‘Likelihood of desired benefit” and move away from the present “risk” versus “benefit.”