True story: Our patient, post-surgery, sees an oncologist who, perusing the pathology report, sees that cancer cells have apparently “penetrated the capsule.” Ordinarily, this means the cancer is invasive and our patient will require a full-bore treatment regimen: chemotherapy with radiation. OK then, but first, the patient asks, please, may I have a copy of that Path report. Sure. (Very accommodating oncologist here). Our patient, who is not a doctor, reads the report very carefully and determines that the wording of the report is actually ambiguous. The rather long sentence describing the neoplastic cells and the organ capsule contains two negative statements, and is therefore easy to mis-interpret. He calls and asks the oncologist to please double-check with the pathologist on this because it’s rather important to get this right.
After a one-on-one talk between the two doctors determined that there was in fact no invasive cancer, just poor wording on a report; and no further treatment was necessary, you can imagine that the Pathologist was quite embarrassed. Our patient, on the other hand, was quite relieved. He had dodged a bullet. And how had he done it? By simply being engaged and involved in his care…and by having a supportive doctor.
It’s chilling to think that this patient could very well have suffered through several bouts of chemotherapy and weeks or months of painful radiotherapy to no good purpose. Real harm could very well have happened. It’s also chilling to think that, so few of us being English majors, and the reading and writing of reports being sometimes so difficult, that somewhere along the line such a fate might have befallen one of our own patients.
Does this mean that every patient should be reading his Path report? Or his Consultant’s letter? Certainly not. Many patients are not intellectually or emotionally equipped to contribute to their care in this way. But, given the paramount importance of avoiding errors, especially errors that compromise patient safety, we should think about possible scenarios in which taking patient involvement to the next level might be appropriate:
If you have a complicated patient in the hospital; and there are multiple consultants seeing the patient, including Residents, rounding at different times; and you see a smart young family member in the room who wants to write down everything you say about his relative (and everything the other doctors say as well) and he happily points out to you that you say something that contradicts something one of the other doctors said; well then, perhaps you have a situation where the “patient” has helped you avoid harm. And that’s good!
And if you have a patient in your office whose case generates reams of lab data; and if that patient shows an interest in looking at every single one of those reports even though he has only a high school education but is eager to spend hours and hours of his time scouring every single test’s ranges of normal, or even “confidence levels”, striving to understand them all by cross-checking with Dr Google, or perhaps with a cousin who is a Chemistry Professor; and will happily point out to you when you missed something; then perhaps you have a situation where the patient has helped you avoid harm. And that’s good.
Truth be told, the practice of medicine is getting more and more complicated, the scenarios above could easily become the norm, and the possibility of patient harm from data overload, overwork, inattentiveness, computer error, staff error…any number of reasons, is always hovering over us. The conventional way we’ve taught to avoid mistakes is to put more and more pressure on ourselves and our supporting staff to check, check, then double check. That’s a lot. The computer was supposed to help. But has it really? Or has it made things worse?
So perhaps one solution to our problem is to enlist patients to help us. Many are eager to be more involved. The usual push-back I hear is that, by giving patients more information, we will generate more questions, taking up more time, which we don’t have. Yes, that may happen; but maybe not. With encouragement, and with Google easily available, most questions patients ask can be answered without our help. And by making the effort themselves, patients can learn a great deal about anatomy, pharmacology, and biology, which could be helpful to all of us going forward.
It goes without saying that a patient who better understands his own disease can better understand his treatment regimen, the side effects he is likely to experience, when he should and should not panic over a new symptom (and call in the wee hours). All of this could lead to incredible time savings, as well as considerable improvements in patient care and patient safety.
We are very fortunate in our area to have a Patient Safety Taskforce, convened by THRIVE, comprised of local healthcare executives, physicians, nurse leaders, and community advocates. They recognize that medical errors are the third leading cause of death in the United States, but, by creating a robust and highly reliable culture of safety in our healthcare systems, every patient will be able to approach their care with full confidence that they and their loved ones will always be safe.