One impetus towards patient-advocates focuses on stories. Our stories. Stories of harm, shock, abuse, neglect, pain, suffering, injury, death, and their outcome, including our phoenix-like rise from them.
I perceive a dark side to storytelling in the context of patient-family members relaying their stories to audiences of medical professionals.
On the IHI Patient Activist Facebook page (membership required) Cari Oliver has postulated a number of stages that taken together might model, or comprise, the range of patient advocate activity. Some are stages of experience, some of action. In general, I think, action stages equate to a fuller, more mature type of patient advocacy than experience; after all, experiences are involuntary whereas action comes from commitment and volition. Mature advocacy blends both experience and action into a contributing force. When patient advocates reach the point of volitional advocacy we offer practical guidance based on wisdom reaching beyond our stories.
So, we have a clear delineation with respect to speaking: those who have stories, and those who have stories plus perspective and guidance. Those with stories want to be heard. Those with guidance want to be *heeded*.
Lisa Blinzler Morrise’s excellent series on the aforementioned Facebook page, Telling Our Stories, provides an expert framework for those who’ve not yet honed their storytelling skills. Beyond storytelling, a number of us have called for inclusion at events at which patient-centric and patient-safety matters are discussed. We rightly feel that our viewpoints, informed by experiences, add a valid, valuable, and missing dimension to the conversation.
Growing one’s personal, experiential story into guidance is a self-directed task. I don’t think anyone else can help us make meaning of our experiences to the point of shaping a presentation into a package of guidance. To be clear, others can help widen our understanding of our experiences by clarifying or defining them, perhaps offering up new-to-us language describing them. We, the recipients of this, can accept what’s given as emotional salve or go further, expanding our guidance based on what meaning we make of the input.
For the mature patient advocate, as long as our participation is based on, asks for, and welcomes our perspectives and guidance, it’s fully legitimate. However, provision of stories in the absence of complete participation when participation is appropriate and desired is to allow pandering.
I understand that part of my intrinsic role and function as a patient advocate is to touch providers who both need and desire touching. I am wary if that is all that advocates are expected to do, or if that’s the extent to which a provider audience wants us to serve. I have grown beyond my story. Participation limited solely to storytelling is merely offering an audience a vicarious experience of living more fully through it. Making up for an absence in listeners’ own lives.
The potential trouble is that our stories are of pain and loss. Living through another’s story is thrilling; that’s why we love hearing them, reading them, or seeing them on stage or screen. Absent our full, fully matured participation, no matter how audiences might honor our presence and sharing, at some point the interaction becomes exploitative. Not by design, but by default.
As an advocate both propelled by my story (experiences) and with learnings to impart (meaning), I must carefully weigh if and when to share my story only as a story. Here’s one example of why: A Denver metro area business newspaper did an end-of-life reform story. They found and contacted me, as it turned out, solely for my story. Despite knowing I had authored an initiative and a book, and despite my inclusion during the interview process of many of my meanings and hard-won learning regarding how we approach and mange end of life (none of which were included in the article), I alone among all interviewees did not receive a business sidebar with a business summary, product offering mention, and contact links. I felt used; the harmed, albeit eloquent citizen, set off as a foil against which medical professionals could offer their expert solutions. My expertise was ignored completely. And this was a *business* journal. This experience, of course, taught me something about how to approach media interviews.
So patient advocates/activists ought to be aware of our roles regarding storytelling. If the impetus for stories and storytelling is phase one in a multiphase plan to fully integrate patient advocates with hard-won expertise into provider-public discourse and institutional alignment toward patient-family safety,, it would be helpful to know that (at which point we might debate, whether or not the time for phases has passed). If the impetus for storytelling is solely to touch with the hope of stirring the listeners’ awakened humanity, advocates in the committed volitional stage ought to know. And, the distinction I’ve pointed out must be top of mind for those who desire us to address their various audiences.