The suitcase of healthcare hope

We are so focused on the politics and finances of healthcare that it’s easy to forget there are stories to each life, moments that shape hope in the face of struggles big and small.

Recently I had the pleasure of sitting with my friends from the Scottsdale Workforce Development group led by Ted Tyler, and we were treated to a session led by the organizational development team at the Mayo Clinic Scottsdale. The story one of those leaders told about what happens when patients first arrive stuck, and fit with something I’ve been thinking for a while.

She stated the obvious, that the Mayo Clinic is a place of last hope. People usually don’t go directly to Mayo. They end up there after a journey through other healthcare providers, often in far away places, who haven’t quite been able to figure things out for them.

What she shared next is something that hadn’t crossed my mind yet. She said today’s patients arrive with a suitcase, physical or virtual, of information from their search for answers. That suitcase contains what they see as hope, but she said it unfailingly actually contains three types of information: 1/3 crap, 1/3 doesn’t apply, and 1/3 in the neighborhood.

It’s up to the Mayo team to sort this out, remembering that it’s in the suitcase because it gave someone hope.

The 1/3 crap part is a mix. There are always people trying to sell snake oil. There are well-intended folks trying to help but not armed with the skill. There are incorrect conclusions from research. There are folks confusing faith with facts, or those with some other agenda. The big problem is there’s a shred of truth in most of that information, enough to cause someone to hang on to it.

The 1/3 doesn’t apply part is harder to sort out. It’s perfectly accurate stuff, if that’s what the patient actually has, which it isn’t. Since nobody else has been able to determine what’s going on, the information seems just as plausible as anything else, and the sources are often highly credible. Backing up and taking a look at the facts, reconnecting the dots, is vital to sorting this out. It’s just as important and sometimes more comforting to know what’s not the problem.

The 1/3 in the neighborhood can then be dealt with. Once they understand, together, this is what the situation is, it can be dealt with. Mayo has a incredible survival rate, plus or minus around 70% averaged across conditions, because of their ability to look at things from a wide range of angles and experience. They are on salary, and not paid to “turn and burn” seeing volumes of patients, and not paid by the test. This is one of the new healthcare places where hope is restored.

There are great lessons in this for both providers and patients and loved ones as we take a bigger stake in our own care. Putting more and better in-the-neighborhood stories in that suitcase can save time, money, and broken hearts. These stories will come more and more from the social fabric, and there are three basic types.

I’ve had that, I did this, and I got better.

One objective healthcare teams talk about today is preventing people from ratcheting straight up to the highest level of acuity. OMG, the kid’s got a fever of 104, head for the ER kinds of stories. We’re at the point where we can collect and share data, and for many simpler conditions it’s possible to get through without seeing a provider. In more serious situations, treatment sometimes presents cleanly and is straightforward.

I’ve got this, and I’m still looking for answers, and I’m frightened.

The typical Mayo patient is here. It’s where people get quiet, because the story has turned scary. They’ve been bombarded with so much stuff it’s getting confusing. Loved ones push for answers. This is where the social fabric can connect people who have the experience, like the teams and Mayo and hundreds like them throughout the world and the patients they have helped, with the people in the middle of the storm. They can then privately and tenderly share stories, both good and not-so-good, and celebrate progress.

I’ve been through this, and it didn’t go how I hoped, but I’ve learned it’s alright.

People start talking again after the experience, with an earned perspective. I remember the best phone call I’ve ever gotten from a doctor was the one I didn’t want. She said very simply: “Hi. I think it’s time for a change in direction.” While I knew what that meant at that moment, it has come back to provide strength dozens of times since when the outcome about to emerge was certain and unpleasant. These stories are important, because they offer a different kind of hope for those who haven’t seen what’s ahead yet.

We’ve raised generations of healthcare providers reluctant to make these kinds of connections, but we’re starting to see changes driven by social computing and more transparent information. People can connect around a story, wherever they are, whatever time it is, and well-founded hope can make all the difference. The healthcare transformation ahead will unfold with stories of hope at the core.

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