Worry, a familiar & unwelcome companion

Worry, a familiar and unwelcome companion on the health journey. What do I have? Will I have to adjust my life (further)? Can I keep the faith? Who will help ME? What have I missed? Can I do it all? Fretting weakens- stomach aches, binge eating, inattention, sleeplessness, short fuse-what a pain! Who, on the health team – person at the center, caregiver, professional – who that is alive avoids worry? It can fill the spaces between the cells. Worrying makes me mad. It saps fuel from my limited tank. What helps me lessen worry? More information, empathy, kvetching for a minute (a timed minute), getting out of bed, making a list, grandkids, music, meditating on my peaceful place, following a mentor/counselor’s instructions, change something in my life, rarely, a pill. How can I help lessen the sum total of worry in my teams and networks? I can recognize the signs, provide information, be flexible, listen, empathize, and offer small unexpected kindnesses. These are magic levers of best health.

Listen to the music

Yesterday I played in a recital with my jazz combo-dedicated amateurs. Musically we have greatly improved.  The devil is in the arranging. Who plays when and where, in what order. Trying to get it right one player sent an email to everyone with the arrangements. We rehearsed one last time in the morning, making a few changes. He sent the revised arrangements out just before the gig.  I printed and didn’t review. One tune was a complete disaster.  The changes were not what we agreed to, I was the only one that printed the changes.  I noticed the discrepancy in the middle of the tune and chose to play as written, not as I remembered what we agreed to. I messed everyone up, the tune fell apart. Disappointment, irritability.

Alignment is tough in music and in health.  Everyone’s talent, passion, and goodwill goes up in smoke when the alignment / arrangement isn’t there. How do we align in health care?  The person at the center and their team knows and agrees on the goals and the action steps. They communicate the inevitable adjustments as they occur. A small tight group that plans is no guarantee that the alignment will hold. Sort of surprising that we expect it to be smooth or flawless. Sometimes if we listen well and hear the mismatch we can adjust and realign and sometimes we can’t. Listening. Anyway, three out of four tunes sounded great. I guess that’s not too bad. But it’s not my health.

Defining Patient and Family Engagement – Threads in the Fabric

I take part in many forums that use the term patient engagement. Most often it means patient compliance with doctors’ orders. I struggle that there aren’t terms for clinician engagement, clinic engagement, hospital engagement, or vendor engagement. The health journey is a series of relationships, partnerships, with shifting foci of ability, skills, priorities. Tools, information, work flows and life flows could help and hinder those relationships.  It’s all on behalf of the person at the center of care, who is sometimes a patient.  I understand that everyone and every team and every organization tends to be self-centered, thinking first of themselves, their own survival. It’s human nature to want someone else to act differently. I know that much of the health industrial complex is really about illness, not health.  It’s usually an illness team not a health team. I also suspect that there’s a similar - minority – proportion of people who drive their own health as there are clinicians and provider organizations that are person centered. Collaboration among people who love each other is fraught, challenging, and continual effort. It gets harder from there. I also know that shared decision-making applies to decisions about treatment AND having persons at the center on Boards of Directors, on design teams, on evaluation teams. How do we then wrestle with the power imbalance of the relationships in the health journey? I don’t think I’m ready for a definition. There’s so much involved. I keep teasing out more threads in the fabric of the health journey.

Can health care organizations learn?

I’m stuck. I’m obsessed with how organizations learn. In my day job as Vice President of Quality Management at Advocates, Inc., we’ve been considering how to promote Advocates as a learning organization including persons supported and their networks, those closest to the work, and all partners. How thrilling! What a goal!!  But how do we actually do it? I’ve read so many books and articles. But they’re prescriptions with no promise of actually working.