Author Katy Butler wrote a groundbreaking expose’ of modern medicine, Knocking on Heaven’s Door, The Path to a Better Way of Death in 2013. The Chicago End-of-Life Care Coalition sponsored a book signing event on her national tour. As President, I spent the day with Katy and we talked about end of life issues, including my Chrysalis Room concept.
I am proud to announce that in her new book, The Art of Dying Well, A Practical Guide to a Good End of Life, she devotes a section to The Chrysalis Room:
Chapter 7 Active Dying, Preparing in a Nursing Home
“If someone you love is dying in a nursing home, ask for a temporary private room. (You may not prevail, but it never hurts to ask.) Or improvise.
When Loretta Downs’s mother was dying in a nursing home in Chicago in 2006, Loretta got permission to transform an unused storage room into a sacred, private space, which she decorated with her mother’s possessions. Friends and family came to share their memories and bring food, and other residents dropped in to say goodbye.
Loretta, an experienced hospice volunteer with a professional background in interior design, named the space she’d created the “Chrysalis Room” after the pupa that holds a caterpillar as it is transformed into a butterfly. The room became a permanent and beloved feature of the nursing home and set in motion a cultural shift.
Before the room was arranged, nursing home staff feared death—and the crowded conditions in which it was taking place—and sent most dying residents to the hospital. Only a few died in the nursing home under hospice care, and their families were forced to keep vigil in a room barely big enough to allow one relative to sit comfortably at the bedside. As soon as the resident died, the room would be emptied and the body taken away. The person would silently disappear from the community they’d long called home, as if they had never lived.
After the Chrysalis room opened, more residents enrolled in hospice care prior to death, and more died in the place that had become their “home,” rather than in a hospital. Other residents became more likely to participate in the final goodbyes, and some became less fearful of their own deaths.
Downs has since helped create similar Chrysalis rooms in nursing homes in Wyoming, Indiana, and the Chicago suburbs. The ideal spaces, she says, are quiet, with natural light, a view of nature, floor lamps, an adjustable bed, a recliner, soft music, and folding chairs. But with a little imagination, almost any private space can be made more humane than a shared room. For more information on how to improvise or build a Chrysalis room, consult Downs’ endoflifeinspirations.com.”
Order the book on Amazon.