Care to Share Your Story
He was only in his thirties when his doctor, my husband, discovered his esophageal cancer. The diagnosis was rare. The prognosis was grim. Standing in our kitchen that evening my husband told me how he sat with J.D., a big, strapping, bear of a man, delivered this news to him and talked about what would come next. J.D. made his living as a modern day prospector in the Adirondacks. For real. For gold. He told my husband about the solitude and solace of an outdoor life and the occasional thrill of finding gold. Hearing that we were about to embark on a trip to Alaska, J.D. insisted that we take his metal detector along – the size of a weed-wacker –to try it out and to vicariously share in the adventure. We lugged that detector in a duffle all over Alaska, waving it hither and yon. When J.D. died a few months later, he left it to my husband. It wasn’t the only piece of J.D. that my husband carried.
I’ve been thinking about the Fletcher Allen promise, “ In Service to the Patient, the Community and Medicine” and about the hundreds of dedicated and caring people who breathe life into that promise each day. What isn’t captured in that promise is the gift we get back by doing the work we do. If you are involved in health care, you can’t help but be moved and influenced by the people around you in ways I believe are more profound than in most other professions. It is such a privilege to be welcomed into the lives of others at often the most difficult of times and in the most intimate of ways, to witness grace, courage, humor and creativity and to take inspiration and an education from the rich lives of the people we touch.
It’s not just the beginnings and endings of life that are so impactful, though you can’t help but feel hopeful and humbled by sharing those moments. The real transformative power is found in the everyday stories of patients’ lives. Sometimes these are cautionary tales and sometimes high adventure! Sometimes these are stories about what a patient has already lived through that reveal their values or beliefs or ways of coping. Often, it is feedback about what it is like to navigate illness from the patient perspective that changes the way we work with the next patient and the next. Imagine how powerful it is to share a little of yourself and make a huge impact on the thinking and behavior of a professional and allow that change to ripple out into the future.
Just as an EKG gives us a picture of what’s going on in the heart from 12 different vantage points, sharing your story gives a health care provider a broader understanding of who you are in the context of your life and a different lens through which to view the world. Patients might be surprised to know how much their health care providers think about them outside of the office or hospital setting. We think about them with compassion and empathy and often ask “what could I do differently?” At the same time and usually when things aren’t going that well, a little personal growth and enlightenment sneaks in. Perhaps not seismic change but subtle little shifts. I used to work as a nurse on the evening shift which I loved because, in the quieter moments as they wound down towards sleep, patients began to process all that had happened during the day and their stories just came tumbling out. That was many years ago and so much in health care has changed but this remains true: sharing your story helps keep the humanity in health care.
As a Patient Advocate at Fletcher Allen, I am privileged to hear a lot of patient stories and to raise awareness of patient concerns in a way that promotes meaningful change. So, thank you for that opportunity and please keep on sharing in person, by phone, email, letter or tweet. We will certainly all be the better for it.
Meredith Moses is manager of Patient & Family Advocacy at Fletcher Allen. April 22-29 marks National Patient Advocacy Week.