Can Patients Help Ensure Their Own Safety? More Importantly, Why Should They Have To?

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.

7 Responses to “Can Patients Help Ensure Their Own Safety? More Importantly, Why Should They Have To?”

  1. Erik October 14, 2009 at 5:28 pm #

    Autonomy in a critical care unit is dangerous. Patients are sedated for procedures, very sick and not capable of making rational decisions.

    We have all had patients with family that actively interfered with the care their loved one was getting, increasing the risk of death and serious morbidity. Relatives that do this think they are helping (well, some do it for control and some to prove how much they care) but it makes no sense to have someone challenge every blood draw, IV placement, medication, pump and procedure of someone who is on the verge of death.

    Perhaps some families are too complacent when their family members are in the ICU (“do I have to come now?”) but some of the ideas that may work in an outpatient setting are ridiculous in the ICU/CCU environment.

    Let relatives be relatives, nurses be nurses and doctors be doctors. Engineer the system so that it works just as well for patients with large families and patients with no living relatives.

  2. Katie October 14, 2009 at 11:47 pm #

    I have a friend with Stage 4 Lymphoma, undergoing treatment in a clinical trial. His wife has been intimately involved with his treatment, carrying his medical records in “the bible” and assisting him endlessly. It seems they have been model patients, not challenging caregivers at every turn, expressing gratitude routinely and profusely, befriending the staff of every medical facility they step into. However, when he was in ICU recently with pneumonia, highly neutropenic and near death, a nurse came in to check his cath and IV. After sneezing in the doorway without covering her mouth, she approached him without gloves and without washing or using hand sanitizer. When my friend stopped her (kindly), asking her to please use precautionary measures, the nurse was highly offended and defensive. Eventually, my friend asked simply for that nurse to leave the room and send in her supervisor. If she had not been there, her very ill husband would have been exposed needlessly to an unknown number of pathogens. It has been frustrating to us that in the midst of educating themselves about this dreadful disease and highly complex medical treatment, in addition to all the side effects, she has had to remain vigilant about very simple and reasonable expectations, like washing hands and not wearing perfumed lotion or colognes. Additionally, it is extremely frustrating for them to be the “bad guys” when simply advocating for reasonable care.
    It is my opinion that there is indeed a fine line between self- or family-advocacy and belligerence. Sadly, without simple things like checklists and procedures – and accountability! – it often falls to the patients or families to be willing to assume the “bad guy” role.

  3. Joel October 15, 2009 at 4:59 pm #

    Don’t your reservations have to do with patient directing rather than the patient reporting that was the subject of the beginning of your essay? It seems as though you might be criticizing patient reporting by speculating about what could go wrong with patients directing – two different things. Patients are not likely to know enough to tell staff what to do. But patients are the only ones who will report what staff do. Health care professionals themselves report only 1.5% of adverse events (footnoted below). It has been demonstrated that, when given the opportunity, patients report more information and more accurate information about adverse events than anyone in health care. Especially when malfeasance is involved. The very first thing that must happen to increase safety is to know who and what the problems are. The only way we ever will know that is if patients report it. Without that information patients cannot be informed consumers bringing market pressures that cause quality to increase and prices to fall. Without it patients cannot even be informed enough to avoid walking into the hands of those who are indifferent, incompetent or evil. Only patients will warn patients. Isn’t wondering whether they should have to only wondering about a fairy tale since no one else will do it?
    Thanks for writing about the subject.
    Footnote: http://patient-safety.com/Medical.Reporting.htm

  4. Kerry O'Connell October 16, 2009 at 9:14 pm #

    I have a Question for Robert: As a Doctor what types of Patient attitudes and/or behaviors inspire you to do your very best work?

  5. Bob Wachter October 19, 2009 at 5:57 am #

    Thanks for the question, Kerry. I like to think that I try equally hard for all patients, but I certainly enjoy working with an involved and interested patient/family who asks good questions the most. And I like working with obnoxious, aggressive, entitled, and unappreciative patients the least. I try to recognize these latter feelings when I have them and redouble my efforts to understand where the patient is coming from (the attitude is often a manifestation of anxiety or fear), and push myself to deliver high quality care even when I don’t care for the patient or family.

    But my colleagues and I are human — and I couldn’t deny that there are times when — at the margin — I/we try a bit harder for the likable patient and a little less hard for the ass.

  6. Naomi October 3, 2013 at 4:34 am #

    Your uneasiness stems from the sense that these campaigns pass the buck. Hospitals/ASCs/clinics fail miserably when it comes to accountability, so the CDC et al, rather than doing serious “root cause analyses” of hand hygiene failure and addressing same systematically, print posters and make buttons and foist responsibility onto patients.

    We need a stepladder of interventions for nonadherence. If staff says they “feel rushed” and “don’t have time,” what does that mean? If we then make it easier for them to comply, and they still don’t, even once, then intervene. Correct the behavior right away. Escalate. Add meaningful penalties. If a patient comes in with C. diff and it starts spreading, do an immediate stand down: Stop everything. Stop admitting patients to the unit. Observe & correct gloving/gowning/other isolation practices, right away. Insist on zero deviation. Etc. Etc.

  7. Jim Whittemore October 3, 2013 at 6:18 am #

    “When I board an airplane, I know that there is virtually nothing I can do to keep myself safe.” There is much you can & should do to manage your risk. Keep your seatbelt on at all times until the plane fully stops and avoid falling luggage from overhead bins. There – 80% of the real-world risk removed or mitigated (I’m making up the number). I suggest always knowing the number of seat backs between you & the nearest exits so you can feel & count them in the smoke-filled cabin.

    If you saw the Captain of your plane downing shots in the airport lounge before take off, would you not speak up? Not sure I see a qualitative difference between an inebriated pilot & an MD with unwashed, germ-soaked mitts – both knew better by training and experience, yet chose non-compliance.

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