Wrong-site surgery is relatively rare but it still happens, as I learned firsthand a few years ago.
I was scheduled to have two wisdom teeth removed from the right side of my mouth. On the day of the surgery, as the staff reviewed the X-ray to confirm the site, I noticed that one of the teeth that had been marked was on the wrong side. The situation was quickly clarified and the correct teeth were extracted without a hitch.
Ideally, this is how it’s supposed to work. Patients, or someone who can advocate for them, are supposed to be aware and informed and to speak up if something seems wrong.
But what would have happened if I’d never heard of wrong-site surgery? What if I hadn’t noticed the X-ray was incorrectly marked? I might have simply glanced at it and not registered the mistake. Most of us, after all, don’t have a ton of experience in knowing how to read an X-ray. I might have just assumed it was marked correctly because I was expecting it to be marked correctly. What if the patient in this case had been a child or an elderly person or someone with limited English-speaking skills? It’s entirely possible that the mistake wouldn’t have been caught until it was too late.
Herein lies the issue with patient advocacy. We expect people to be knowledgeable and to participate in their care. And many of them do so, quite successfully. But is this realistic for everyone in every situation? Because, at times, it seems like expecting too much.
To be sure, patients, or someone who can speak on their behalf, should be informed about what’s happening with the patient. The three most important questions, according to the Partnership for Clear Health Communication, are: What is my main problem? What do I need to do? Why is it important for me to do this?
At a minimum, patients should know their diagnosis and the plan for treatment. They should know what medications they’re taking, why the medication is needed, the dosage and the frequency. They should know their past medical history.
Above all, they should ask questions, particularly if something isn’t clear or hasn’t been resolved to their satisfaction.
For many people, though, this is far easier said than done. The knowledge gap, not to mention the imbalance in power, between the layperson and the health care professional is often enormous. What’s routine or obvious to the professional is not necessarily routine or obvious to the patient. Patients may not understand the terminology, nor do they understand how the system is supposed to work, especially if it’s a situation they’re encountering for the first time.
Health literacy has been identified as a serious barrier to engaging patients in their own care.
But even someone who’s highly literate can find it difficult to advocate when he or she is stressed out, not feeling well, or is rushed through an appointment.
Above all, health care is extraordinarily complex. How is a patient supposed to recognize, for instance, a rare drug complication? How are patients supposed to know that the IV drug they’ve just been given is the wrong one, or is a 10-fold overdose? How much can patients be expected to know about the vulnerabilities in the system – for instance, the hand-off from hospital to outpatient clinic – and know what steps to take to smooth the transition and avoid a potential disaster? Even health care professionals, who know the system inside out, often struggle to get it right.
It’s not always enough for patients and families to just ask questions. The questions need to be the right questions. And to ask the right questions, you first need to know what the right questions are, and this takes a certain level of knowledge which many laypeople simply don’t have. As the saying goes: You don’t know what you don’t know.
There’s no clear set of directions for how to turn patients into better advocates for themselves. Maybe we can start by recognizing that everyone is at a different level. Many will welcome the participatory medicine movement and have the intellectual and technological wherewithal to embrace it. Others, for whatever reason, may never progress beyond the basics.
Maybe we need to recognize that people have varying levels of comfort with information. Some want to know all the details; others don’t, and this is a difference that perhaps needs to be respected more. For some people, not knowing every last detail is how they cope, how they keep the threat at a level that’s manageable for them.
We need to recognize that people often bring a lot of baggage into the health care encounter. Sometimes they don’t ask questions because they’re afraid of what they might hear, or they’re not ready yet to hear it. Maybe they’ve had a negative experience in the past with being shot down for asserting themselves, and they’re reluctant to risk having it happen again.
We need to be careful about blaming patients and families when something goes wrong. Although outcomes are usually better when patients can advocate for themselves, advocacy is not a magic silver bullet. Disasters can happen even when patients are speaking up and involved in their care.
The system has to be part of the solution too. In an online interview about literacy and patient safety that appears this month on the Agency for Healthcare Research and Quality Web site, Dr. Dean Schillinger calls it "a shared responsibility" and asks, "to what extent do we enable and prepare people to take on that responsibility?" Health care systems are often complicated and byzantine. Some patients learn how to successfully negotiate this maze, but others can’t.
Whatever the route for getting there, it seems that information and communication, preferably at the patient’s own comfort level, are key. Given these tools at the right time and in the right quantity, the majority of patients will likely be able rise to the occasion. More involvement in our health care and health decision-making is, after all, something that most of us want.
But it shouldn’t automatically make someone a bad patient for not measuring up to the standard. And above all, we need to tread carefully in how much responsibility is placed on the patient because, sometimes, it truly is too much to expect.