Shared decision making is an idea that has been around for a while in cancer care, but what does it really mean, and, more specifically, what is the nurse’s role in shared decision making? Are only specific nurses involved, like clinical trial nurses, nurse navigators, or advanced practice nurses? Or, is it a role for all oncology nurses?
Looking back over my years as an oncology nurse, I think we have always been involved at some level in shared decision making with patients and families. It may not have been in the formal sense as the term is used today, but rather as a sounding board or source of clarification after they spoke with their physicians. How many times have patients asked you, right after the physician leaves, for an explanation of what was said? I’m pretty sure almost everyone reading this has been in that situation!
That’s part of our job: ensuring that our patients and families clearly understand information about their disease and treatment at the level they desire, yet grounded in reality. What each patient wants to know, and how specific, can vary dramatically. What also varies is their ability to grasp some of the concepts and terms we use routinely. Not because they are unintelligent, but because it’s a totally new language if they are not involved in health care, particularly oncology, and much of the information they receive to make a decision is somewhat abstract (e.g., risk-benefit ratios; full remission, which is often interpreted as a cure; survival statistics).
A large part of shared decision making occurs at, and shortly after, an initial cancer diagnosis. Many patients and families are overwhelmed with information, asked to make multiple decisions, and need to make decisions about treatments they’ve never experienced and of which they have limited knowledge. Why should I choose regimen A versus regimen B? How do I compare the risk-benefit ratio of different treatment choices? As a non-healthcare professional, how can I truly decide if the benefit of the treatments is significantly different? How do I know whether the risk for kidney damage with one treatment is better or worse than the risk for neurologic damage in the other?
Shared decision making is one way that oncology nurses can strive to help patients and families truly understand the information, apply it to their specific situation, and be confident in their treatment decisions.