Sometimes the best care we can give is to be quiet, observant, and appreciative of our patient’s sharing a life-changing moment.
I parked my car, took a breath, and prepared myself for another hospice visit with Roberta. Her eyes danced, her face conveyed countless emotions, and she shared her impish grin with me. Other than the ability to move her head slightly, Roberta’s body and voice were stilled by ALS. Roberta’s husband and care team tried every communication assistive device available in the early 1990’s, but nothing worked for her.
As I mentally rehearsed interesting topics for my monologue at her bedside, her husband raced out of the house, grabbed my hand, and shouted, “You’ve gotta see! You’ve just gotta see this!” Bracing myself for a catastrophe, I saw Roberta sitting up in bed and smiling brightly!
Joe gave me a little shove into the bedside chair, placed an odd-looking crown on Roberta’s head, grabbed a giant piece of poster board, and then looked straight at me and ordered, “Be quiet. Don’t do your regular talking. Just be quiet.” I was confused, but did as I was told.
Joe held up the poster board, which was filled with rows of letters. Roberta began to nod. I was confused at first, but then I understood. One letter after another lit up thanks to the laser pointer Joe had attached to the top of Roberta’s crown, directed by her only physical ability: a nod.
“I-h-a-v-e . . .” Nod by nod, letter by letter, until her message was complete. “I have come out of prison.”
Over the next three months, Roberta shared personal remembrances to her young grandchildren, letters to friends across the country, and a collection of her favorite jokes for her book club. Then the crown unfortunately went silent.
Almost 30 years have passed since that visit, but the lessons remain:
1. Roberta wasn’t cured, but her greatest need was temporarily healed by a simple device created with love in her husband’s workshop.
2. Sometimes the best care we can give is to be quiet, observant, and appreciative of the invitation to share a life-changing moment.
3. Not all end-of-life conversations are about dying. Roberta loved it when I read her jokes out loud. Patients often want to experience joy with us. That’s good medicine too.
Sometimes we serve best when we honor the power within the patient.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.