The new definition of participatory medicine at the Society’s website notes that patients “shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as full partners.” As with any collaboration, this must include a hefty dose of listening by both parties.

I recently returned from an extraordinary week in Minnesota, with visits to several thought-provoking care facilities. The week was all about improvement: I spoke at the Institute for Clinical Systems Improvement and IHI Colloquium, I visited the brand new Frauenshuh Cancer Center where a friend works (wow), and toured the Mayo Clinic. I returned with a headful of what’s possible.

Then I found a post on Paul Levy’s blog at my hospital, “Patients will teach us how to be compassionate.” He relates a problem of a chemo patient, a “difficult stick” for the needle people, who asked for the special IV team, who can handle difficult cases. She was told no, and got hurt. Paul asked the team to come up with a better approach. The team will now flag such patients in the system, and he asked them to convene some patients for a further discussion.

Please see that post for the full story – it’s shorter than what I wrote in reply:

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You are overly kind in saying how much I’ve taught. It’s here at Beth Israel Deaconess that I’ve learned what openness can be, including being open when you’re still failing. (For some slides last week I had occasion to review your earliest posts about central line infections – a BIDMC improvement for which I was grateful when my time came and I received four.)

I applaud the (new?) policy that when a patient requests the special team, staff will comply. And yes, I’m citing “compliance” as a *clinician* issue, tho providers only talk about patient compliance.

(Our mutual friend Linda Kenney, also on this thread, has said that after 26 surgeries she’s always surprised when her hospital’s staff still doesn’t listen to her about how her body’s doing during recovery. And it’s a big famous Boston hospital. Medicine really does need to listen to patients – we’re not as ignorant as some providers seem to think, and we do have a bit of a stake in this!)

Returning to this post, I still hear a pervasive and IMO inexcusable silo problem. “There is no way to coordinate those teams” resonates loudly with silo problems I had during my hospitalizations in 2007. The root cause was that not a single individual anywhere – not even my primary – was responsible for coordinating my care and ensuring that all my “subcontractors” knew what they needed to know, so that appropriate services would be arranged.

Since nobody was responsible for coordination, any lack of coordination was not a failure in anyone’s world.

Numerous times during my case, I’d get a call or an in-patient visit from a worker asking or telling me to do something who obviously had no clue about my complex case; he or she was only doing his or her job, and was unaware that her instructions could do me harm. Two were people who didn’t know my leg was in the process of breaking due to a bone met, so they gave me instructions that could have been harmful.

More than once as I discussed this with clinicians, they reflected that there’s no billing code for care coordination – which brings us back to Amy Ship’s “no billing code for compassion.” Yet none of these good people felt that they needed to do anything about it! (Or could, perhaps.)

Another example, non-medical but patient-centered, is coordination of multiple appointments. At that time I was seeing my urologist, oncologist, and orthopedist. I asked if I couldn’t get a set of appointments on the same day, so it was only one trip to the hospital. The good people talking to me sounded like I was a little crazy to think such a thing was possible.

I’ve since learned that Lahey Clinic has people who do exactly that; apparently they’ve rearranged clinical hours to make this feasible. Imagine: doctors rearranged things to be more available in patients’ lives!

Yes, if you gather some “frequent flyer” patient families and ask what would make their lives better, you’ll get some invaluable input – and at no cost except the price of listening.

Also, non-frequent-flyer patients will give you different inputs on the “new customer” experience, which is pretty important too as someone enters their first scary hospital experience.

Finally, once this “difficult stick” flag is established, please standardize a process of telling the patient/caregiver the flag exists, how the staff uses it, and that they should always check with the worker to ensure the flag is currently correct in the system. That’s empowering; it enables the patient to influence how things go.

I’ll tell you firsthand, that by itself gives a patient a helpful sense of having some control over things. The WORST thing for a desperate patient is to speak up, asking hospital staff for what we need, and be told it’s not possible.
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As I said, that comment was longer than the original post.  That’s because after a week of talking with and listening to hundreds of clinicians who DO have improvement in their minds, it’s clearer than ever that real patient-centered thinking and care processes are entirely within reach.

I was especially wowed by the new chemo rooms at Frauenshuh – you get a private room, with a recliner than elevates to an examining table so you don’t have to get up and move around, a soothing garden outside most rooms, computer in the room, etc., so you can settle in as providers come to you – you don’t go to them. I told my friend Peggy Weber, “This is like a chemo spa!”

It can be done.

So indeed, I’m starting to hear the word “compliance” from a different perspective: the patient’s.

Dave deBronkart, also known as e-Patient Dave, blogs at e-Patients.net and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!