I had known that her youngest child has some significant health issues. That morning, I learned about the seriousness of this child’s condition. It has a significant impact on their daily lives and the situation can turn on a dime.
We ended up in some nitty-gritty territory about how she maneuvers through life working to keep her child as healthy as possible. She showed me a sheet of paper she has with her at all times that she hands to emergency department personnel to get them quickly up to speed on the nature of her child’s syndrome. The information helps protect her child from well-meaning interventions that could quickly turn harmful. She has, out of necessity, become a “mama warrior” who knows that she is the guard standing watch every time her child reaches the health care system.
I found myself contrasting her preparedness, advocacy, and knowledge with that of a friend whose elderly father died in a hospital. He had, as my friend called it, a “bad case of the 88’s.” This case of the 88’s, or battling old age, proved fatal two days after undergoing major cardiac surgery.
It had taken many conspiracies of silence to get this distinguished gentleman through the doors of the operating room with no meaningful conversations about what mattered most to him. There was silence between him and his family; there was silence between him and his providers. No one helped him align his end-of-life wishes with the options available.
He did not have a mama warrior by his side to help him navigate his way through the health care system. He spent his final hours in an ICU. Is this what he wanted? Who knows?
IHI’s “Conversation Ready” work began in 2012 to develop reliable processes for health care organizations to engage patients in conversations about their end-of-life care wishes, steward that information as reliably as allergy information, and then respect those wishes at the appropriate time.
Is your organization ready to meet people where they are and break the conspiracy of silence? Or do your patients need to bring a mama warrior with them when they interact with your health system?
IHI Director Kelly McCutcheon Adams is director for the IHI Virtual Training: Is Your Organization Conversation Ready?, one of the benefits included in the Passport to IHI Training membership.