“I never imagined that this could happen.”
In just a few months, I have heard more than a few of my patients say this to me after undergoing an operation.
In these moments, I cannot help but ask myself, what did we fail to communicate to these patients during informed consent such that they are blindsided by an outcome? I wonder, what could we have done differently such that patients can better understand the choices they face?
In our current model, the physician and the patient meet in an office or inpatient setting to discuss consent for an upcoming procedure or clinical trial. Often filled with medical jargon, the conversation rarely assesses the patients’ baseline level of knowledge or their degree of comprehension afterward.
For instance, given the advances in computer software and even social media, we no longer need to be limited to a single place or time.
The patient can be engaged in informed consent as soon as he or she makes an appointment.
Using a virtual platform, the patient can find all essential information related to the intervention in one location prior to the hospital admission or office visit. Its content, organized by the provider, will walk the patient through the traditional components of informed consent. While the basic components stay the same, the fundamental difference here is that social media has the potential to render it more dynamic, interpersonal, and equitable.
To optimize patient learning, medical jargon can be linked to background articles or easy-to-understand media. Occasional quiz questions can pop-up to ensure the patient comprehends the crucial details. Because interactions are not restricted by office space and one-on-one time, patients can spend as much time as needed to review the content and even pose questions to the provider-team directly, to be answered during the upcoming appointment.
The platform should enable patients to learn from each other
One of the fundamental limitations of informed consent is that no matter how much we optimize the process, the patient cannot fully understand the implications of an intervention until he or she experiences them firsthand. For instance, no words from a physician could ever hope to illustrate the feelings of post-operative pain, or the day-to-day limitations of living with stroke deficits. Physicians may know the science, but we have not experienced the day-to-day realities of patients. It is oftentimes our failure to convey these types of information that patients often find themselves blindsided by the aftermath.
However, they may be able to get some of these perspectives from other patients who have gone through them. If mutually desired, the platform can help connect patients to share their experiences or organize meetings, so they may be able to better understand the realities of potential benefits and complications. In these instances, we need to believe that patients, not just physicians, may also know best, and enable them to empower each other.