This post by long-time SPM member Michael Millenson first appeared on the EngagingPatients.org blog. We’re re-posting it here to both put it on the membership’s radar, and to invite comments on Michael’s POV that “As much as we can argue that patient engagement with their own healthcare decisions is progress, asking patients to keep doctors honest about the most basic medical practices is less a form of patient-centered medicine than a tacit failure of physician professionalism – and to an even greater degree a failure of medical management.”
The process of engaging patients in making care safer should be seen through a Santa Claus lens. It can be naughty or nice, depending not on good intentions but on the specifics of the intervention.
Seeking True Empowerment
The key question is whether patients are being truly empowered or whether providers are passing the buck, placing on patients’ shoulders responsibilities that rightfully should reside elsewhere. It’s like those old Westerns where the sheriff hands rifles to a bunch of ranchers and tells them to form up a posse and ride with him after the bad guy. While it’s nice to be a valued part of the justice system, there’s a reason the local citizenry finally coughed up enough cash to pay for a real police force.
When providers ask patients to help them prevent the routine hazards of hospitalization, it’s an implicit admission of professional failure dressed up in empowerment clothing. It’s not my job as a patient or family member to make sure doctors and nurses wash their hands. It’s not my job to make sure I get the right medication. It’s not my job to make sure the room is clean.
Patients as ‘Safety Buffers’
As a 2007 article in the journal Health Expectations on patient involvement in patient safety put it: “Patients can act as ‘safety buffers’ during their care, but the responsibility for their safety must remain with the health care professionals.”
A blog post in mid-2014 from Dr. Marc-David Munk put it even more bluntly:
As much as we can argue that patient engagement with their own healthcare decisions is progress, asking patients to keep doctors honest about the most basic medical practices is less a form of patient-centered medicine than a tacit failure of physician professionalism (and to an even greater degree a failure of medical management).
I accept that being a “safety buffer” is, for now, a necessary role, but it should be a source of professional embarrassment rather than pride. Imagine your family went to a restaurant that promised a “patron-centered” dining experience. After being carefully consulted on the ingredients for each individual’s appetizer, main dish and dessert, the chef adds one last request. Could you please smell the fish, chicken and meat and take a close look at the vegetables to make sure nothing is rotten? Of course, the restaurant tries its best, but buying and preparing food is an inherently unpredictable process.
When, after 150 years to get it right, hospitals boost their hand-washing rate to 90 percent or more, patients will be a buffer. At 50 percent hand hygiene compliance, you’re asking us to put our finger in the dike while you ignore the raging ocean on the other side. Again, it may be necessary for safety, but it shouldn’t be.
Consider the Implications
In early 2014, the Centers for Disease Control and Prevention issued an infographic for patients on healthcare-associated infections. “Be informed. Be Empowered. Be Prepared,” it proclaims. Some of the advice is legitimately empowering, some isn’t. “Ask your doctor how he/she prevents surgical site infections,” followed by “Also ask how you can prepare for surgery to reduce your infection risk” gets the roles right. But, “If you have a catheter, ask each day if it is necessary” is advice that sounds reasonable until you play out the implications a little further.
Imagine this dialogue one morning in the intensive care unit:
“Doctor, based on my 15 years as a real estate agent, I wonder whether that central line catheter providing me with nutrition and medications really needs to be in my chest today.”
“Based on my 15 years working with desperately ill patients, I thought so, but now that you mention it, let’s remove it right now.”
I feel more empowered already.
A Matter of Professional Responsibility
There are guidelines to ensure that central lines are used appropriately. When they are followed, along with other “checklist” items related to monitoring use of those lines, bloodstream infections related to central lines drop dramatically. Fewer patients are hurt and fewer die. It is a professional responsibility of the highest order to ensure that systems and a culture are place to ensure those guidelines are followed. The same holds true for dispensing medications and hand hygiene.
By contrast, providing patients and family members the means to protect themselves in case of rare events that could seriously harm them is truly empowering. So, for instance, enabling a family member to “call a code” for a rapid response team acknowledges that even the best systems can break down and that patients can be trusted as partners in care to react appropriately. It also acknowledges that a hospital’s workplace hierarchies may cause a nurse or junior physician to hesitate where the patient’s family will not.
True Engagement is Collaboration
Enabling patients to report adverse events is engagement that’s empowering. So is having the staff seek real-time feedback from patients on possible safety issues. Establishing patient and family advisory councils to examine hospital processes through the patient’s eyes for ways to make care better is enormously empowering. True engagement is collaboration; the rest deserves a lump of coal in the stocking.
“True engagement is collaboration”
Actually that clears something up for me. After Hugo Campos’ article on patient autonomy vs patient engagement, I actually became bothered by both phrases. The word ‘patient’ in both terms could imply, especially to those new to the discussion, that the engagement only benefits the patient and/or the patient is the only one needing to be engaged and totally responsible for making it happen.
Autonomy also brings some exclusion to the medical side, and even tho I much prefer the concept, as it can produce a vision of medical care being a bit like a grocery store where I tell the guy at the deli counter how I want my cheese sliced. I get exactly what I want, exactly the way I want it from a guy wearing plastic gloves.
Collaboration tho, that brings a vision where the patient and care team all work toward a solution, sharing the work, the reward, and the risk.
Maybe Collaborative Care, or some such phrase, where patients, doctors, clinics, practices, hospitals are not mentioned as a part of the name could provide more neutral language for what we really want, which is to be involved and contributing to our care?
I am on a PFCC Council, have attended a few conferences as well. I wish Collaborative left me with a better feeling. I am finding great resistance from some areas, and if they hear that specific word, they may indeed perceive it as plotting against them. This is a very fine line we walk. Many are rather unhappy when I have resisted standard operating procedures, and consider me a PITA. Enlightening the resistant is an unwelcome happenstance.
I like the phrase “collaborative health” quite a bit, but am told by some colleagues that is too elevated a vocabulary word. (sigh). Hearing that it can cause resistance, though, is very interesting.
Thank you, Scott and Sherrie for sharing
What words wouldn’t be considered “plotting” or “too elevated”? Shared Health? Cooperative?
It’s an issue. Perhaps shared health (though others could object that it’s MY health, not “ours.”)
Let’s just pick iHealth and let Apple sue.
I agree with your overall conclusion that patient engagement, in the ideal, is a collaborative relationship where docs and patients work together to accomplish patient safety and improved quality of care. I cannot quite buy in to the fact that asking patients to be more aware of such things as hand-washing, (both their own and their proviers’ hands,) should be the responsibiity of the provider community and patients should not be held accountable for any of this. To observe and participate in maintaining simple safety precautions, while in-hospital or, for example, to be more diligent in making sure that as patients we understand all of our discharge information, should not fall on the shoulders of the physicians alone, but should be a responsibility of both patients and doctors. It all boils down to effective communication and a trusting relationship that should be the hallmark of every doctor/patient interaction.
Nancy, I try to draw a distinction (perhaps not well) between communication-related issues and those that are not. Discharge instructions, for example, require collaboration. And, again, I absolutely agree that (today) patients need to be aware of hand-washing.
But in a high-reliability organization, certain precautions should happen automatically. I don’t ask my surgeon to be sure he wears gloves during the operation. Hand hygiene should be the same way. Discharge instructions, on the other hand, require an interaction.
It is, of course, a bit of a journey from “should” to “does.”
Somehow I only now stumbled across this post. YES! YES! YES! YES!
Patients and clinicians COLLABORATING, yes, that’s engagement. (Including the central line question IMO… assuming it’s with a tone and context of healthy respectful partnership. IMO.
Asking clinicians to just DON’T TELL PATIENTS TO BUZZ OFF – that’s not engagement. Same for DON’T EVERY SAY “WHO MADE YOU THE DOCTOR? I’LL DECIDE.”