Everywhere I go it’s patient-centered this and patient-centered that. What does it even mean? It doesn’t take long for buzzwords to wear thin (patient engagement, silos, gig economy, NexGen). Don’t me wrong. I wholeheartedly support Patient-Centered Outcomes Research Institute (PCORI) and the Patient-Centered Clinical Decision Support-Learning Network. I subscribe to Picker’s Eight Principles of Patient-Centered Care.
I also endorse the IOM (Institute of Medicine) patient-centered definition “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”
Once something becomes part of popular jargon and media I can’t help but re-evaluate what I mean and what others mean. When I’m invited to sit at a governance, design, operations or learning table I ask, What do you mean by patient-centered? Invariably, people assume what others mean and actually have different definitions (or often, none at all). The most common definition people say is, patients are in the middle of everything. Well, they’re not. I can’t even picture the design challenges of patients in the center of everything. I am in the middle of everything for me. That’s complicated enough. I’m learning that being self-centered means taking care of myself and standing up for myself. I’m responsible for doing the work to understand and communicate my preferences, needs, and values. I’m responsible for respecting myself. I’m pretty good at that, but I could be better. I need my whole team to understand their preferences, needs, and values, respect themselves and take care of themselves. I need them to keep up with the skills and knowledge of their specialty or role. Stronger team members make for better collaborators with more respect overall. I’m going to have better health in the long run when clinicians stand up for themselves and struggle with the oppressive business of health care. I’m better off when they are less burned out and have more time for me and themselves. I’m better off if they’re self-centered and take care of their jobs – knowing and communicating choices to me.
I am better off when I understand that I have some control over my behavior, but not complete control. Certainly, environmental conditions affect my health as do the inequities in life, healthcare, and my communities. I have less control over that stuff. When you get down to it, we control what we can control. Some of the best advice I’ve ever received was from the grief counselor I went to when my boy, Mike, was dying. The counselor said, some stresses you can control and some you can’t. Your job is to control the ones you can so you have the energy for the ones you can’t. There are some stresses to my health that I can control and some that I can’t. I can control much of my behavior. I can’t control the part that is affected by my genetics, biology, and circumstances. I was born white, male, affluent, living in the US, without addiction genes, with multiple sclerosis, and with pathologically optimistic.
I need my professional and lay team to help me be patient-centered.
In response to your queries and concerns, my dear readers. I’m doing well with the electric wheelchair. Still walking my 3500 steps a day, but tooling around with my wife when she walks more. We’re planning some small trips to try out traveling with it: flying to WV in July, driving to Quebec City in October, maybe to Spain in May. I didn’t quit playing my bari sax. I’ve resumed biweekly lessons with my teacher via Skype. Live is good.
Defining Patient and Family Engagement – Threads in the Fabric