Sticking with my recent hand hygiene theme, an interesting study came out last week demonstrating that outpatients were willing to help audit their providers’ hand hygiene practices. The patients felt that snooping on their docs didn’t poison the physician-patient relationship. Moreover, their observations were accurate and the program was dirt (probably the wrong word) cheap, less than a quarter per observation.
This study falls under the broad umbrella of: “What can patients do to ensure their own safety?” Because this is the safety-related question that I’m most commonly asked by media and the public, I’ve given it quite a bit of thought.
I’ve found it tricky to formulate a pithy response to this question, since the obvious and PC answer (a full-throated endorsement of patient and/or familial hyper-vigilance) is probably wrong. Surely, the ethical virtues of an informed and participatory patient or family are unassailable. And, from a patient safety perspective, an extra set of caffeinated eyes primed to notice hazards and empowered to point them out (“excuse me nurse, but I think my roommate is the one who’s supposed to go to the OR, not me”) probably will prevent a medical error from time to time. Asking for proof that patient/family engagement works might seem like seeking proof of the value of parachutes, the subject of a BMJ satirical shiv famously aimed at the heart of evidence-based medicine zealots a few years back.
But parachutes and political-correctness notwithstanding, I have several reservations about the premise that patients and families can and should be central players in efforts to prevent medical mistakes:
The first is that it might not work, or might even hurt. In the early days of “sign your site,” before the process was standardized, patients often tried to be helpful by marking their own limbs before they went under the knife. Unfortunately, some patients marked the limb to be operated on, while others marked the limb to be avoided. As you might imagine, this kind of anarchy introduces new possibilities for errors.
Second, even if the well-informed and alert patient or loved one can help prevent some errors, too many patients lack the resources to act as advocates for their own safety. Particularly in the hospital, many patients are confused, anxious, or sedated or have language differences, health literacy challenges, or no involved family members. This uncertainty means that relying on a strategy of patient engagement will always be a crapshoot. Reflecting on these first two concerns, University of Cambridge safety engineer Melinda Lyons observed,
… in safety engineering terms, … patients are unlikely to provide a consistent and reliable contribution to the safety of the process of their own care. In a domain with a safety problem that is moving towards advocating the “systems approach”, it seems nonsensical to also advocate a solution with apparently decreased reliability.
Third, some patients and families, hell bent on doing what they can to prevent errors, will cross the very thin line that separates being empowered and appropriately skeptical from being bellicose and confrontational. The latter attitude can lead providers to adopt a defensive stance or even generate outright avoidance; assuming they’re human, doctors and nurses will think twice before entering a room in which the patient or family member is playing the role of junkyard dog. Such hesitation is not likely to promote safety.
Finally, we have the sobering observation that patients and families often feel guilty about medical errors. The superb documentary When Things Go Wrong (later described in a NEJM article) told the story of a young man with sickle cell anemia and well-documented life-threatening reactions to morphine who received this medicine despite his family’s repeated warnings. When renal failure and coma resulted, his sister recalled,
the feeling was impotence, because you can’t stay with a patient 24 hours a day. That’s why you rely on hospitals – you rely on nurses. You feel like you failed your family in terms of ‘I should have been there.’ That’s a guilt that everyone shares.
I see this misplaced flagellation as akin that created by the old canard that cancer patients can prevent recurrences simply by having a really positive attitude. This is a nice idea unless the cancer recurs, after which some patients beat themselves up for not thinking positively enough.
Even with these caveats, certain patient engagement strategies do have parachute-like face validity. Much of our progress in patient safety has come from the involvement of patients and their proxies at a policy level. This advocacy is most vividly illustrated by those patients and families who have channeled their grief over a devastating medical error into working with the system to improve safety – think Sorrel King or Sue Sheridan; a heartrending act of charity and a positive force for change. And patient engagement at the organizational level, such as having patients on key safety committees, seems like a great step to help keep systems focused and honest. Finally, the ethical imperative to inform patients about their care and allow them to fully participate in decisions about it is self-evident, independent of the impact on safety.
As I’ve reflected on my own ambivalence on patient engagement, I have discovered that it partly flows from these practical concerns – my lingering doubts regarding whether it really works. But I’ve also come to realize that it stems from a more fundamental rejection of the premise itself: why should it fall to patients and family members to ensure their own safety? When I board an airplane, I know that there is virtually nothing I can do to keep myself safe. I’m still able to relax (mostly) because my feelings of impotence are outweighed by my trust (appropriate, I really hope) that the airlines and FAA have done all they can to ensure my safety.
Patients encountering the healthcare system lack this trust, which make relaxation and passivity seem maladaptive, even suicidal. So I completely understand why patients and families would want to do whatever they can to improve their odds of emerging unscathed. I’m just not sure how well the resulting tactics work or how to apply them most effectively. Clearly, this is a testable hypothesis, and it should, in fact, be tested.
In the meantime, while we should support the efforts of patients and families to participate in their own safety when feasible, our primary focus should be on making such hyper-vigilance unnecessary. This one is our bad, not theirs.