Finding inspiration in patients’ stories

As a healthcare writer, I tend to gravitate toward healthcare-related non-fiction. Atul Gawande is one of my favorite authors. I’ve read all of his books: Complications, Better, The Checklist Manifesto, and Being Mortal. I appreciate the insights he shares into the complexities of healthcare as well as art and science of medicine. I also appreciate his humility, self-awareness, and sensitivity to patients’ stories. These are admirable traits in any individual and especially in a clinician who — like many physicians — is inundated with regulatory requirements and other demands.

In his most recent book, Being Mortal, he examines end-of-life care, pointing out that we (as a society) seem to have gotten it wrong — i.e., that far too often, we assume that those at the end of their lives have essentially nothing left to give. Instead, he says, these individuals have much to contribute and that silencing them is both shameful and wrong.

In an article for the New Yorker, he wrote: “Medicine has forgotten how vital such matters are to people as they approach life’s end. People want to share memories, pass on wisdoms and keepsakes, connect with loved ones, and to make some last contributions to the world. These moments are among life’s most important, for both the dying and those left behind. And the way we in medicine deny people these moments, out of obtuseness and neglect, should be cause for our unending shame.”

I couldn’t agree more. We need to shift the way in which we think about end-of-life care. People don’t stop living simply because they’ve reached this final stage in life. They still have stories to share, hobbies to pursue, and connections to make. They are alive, and they don’t want to be treated as if they’ve already passed on.

We also need to be more comfortable talking about death — something I, myself, find challenging. Having watched my own grandmother trudge through the final phase in her life — and ultimately pass on a few years ago — I know how difficult it is to finally let go. At the very end of her life, I think the times she felt most understood were the times I simply held her hand and told her I was happy that she’d finally reached the point at which she felt she could leave this life and move toward whatever comes next. She didn’t want me to mourn. She wanted me to rejoice in her decision.

As a healthcare writer, I spend a lot of time sifting through complicated healthcare regulations. But at the end of the day, patients’ stories are what are ultimately what drives and moves me to write in this space. Atul Gawande gets it. He understands that healthcare is more than just words on a page, medical codes on a claim, or diagnoses out of a textbook. Patient stories matter, and all patients matter — including those at the end of their journeys.