J.J. Duncan has worked on reality shows as varied as Project Runway and The Gentle Art of Swedish Death Cleaning. After mothering her son through his death at age 11, J.J. believes that the stories we see on television can help shift the culture around death, dying, grief and loss. We had the honor of interviewing J.J. in advance of her appearance at the End Well Symposium on November 16th in Los Angeles.
“It was through other people’s stories that I found handrails to handle my own son’s death, and to know how to walk him through the final days, hours, minutes.”
Q: Death is often considered taboo. Was there a defining moment in your life that ignited your passion to discuss and address end-of-life experiences openly?
My true defining moment that opened my own passion to discuss end-of-life experiences was the death of my child. My boy, Mason, died of leukemia at the age of 11 in 2020. Having to parent him through death gave me insight into the fact that I HAD NO MODELING for this event – because no one openly talks about death and dying. So now I talk about it, in hopes of helping others.
Q: Given your unique background, how does your work intersect with the end-of-life and grief conversation — and please give us a preview of what you’re talking about on the End Well stage.
I am a story-teller. I have been my whole life, and so it surprised no one in my family that I found a career as a story-teller. These days as a television producer, and writer, I find that it is through story-telling that we can become comfortable discussing death, dying, and grief. It was through other people’s stories that I found handrails to handle my own son’s death, and to know how to walk him through the final days, hours, minutes. It is now my goal to encourage story telling on a macro and micro level around the realities of death and dying. In so doing, we take away the stigma associated with an event that is inherently natural and inevitable.
Q: Cultures around the world have different practices and beliefs surrounding death. How has your cultural background influenced your perspective on the end of life and grief?
My cultural background is very typically American. I come from a prideful southern conservative, Scottish-descent Presbyterian family – who never spoke of emotion or anything negative. Everything must appear “perfect” and positive, or else there’s a smiley “bless-your-heart” associated with you. So death/dying/grief was always buttoned up and confusing. You handed over everything from the body to the grief to doctors and clergy and you moved on.
“We tell our marriage stories – we tell our birth stories – we tell our career stories. Why is it so taboo to tell our death stories?”
Q: In your experience, what is the most significant societal norm or belief about death and dying that needs to be challenged or redefined?
That death is a medical event. I believe we have over-medicalized death, and there is a peace in accepting when death is inevitable, and there is a way to make death much more comfortable for all involved. I support home-death when possible. I believe we will change this by TELLING OUR DEATH STORIES. The societal norm of NOT discussing death, or that by talking about it we are somehow “giving up” needs to be addressed, and I believe we do that by telling our stories. We tell our marriage stories – we tell our birth stories – we tell our career stories. Why is it so taboo to tell our death stories? I aim to change that.
Q: How do you hope various professions and disciplines can come together to create a more human-centered approach to end-of-life care and experiences?
I would love to see the medical establishment become more accepting of death, and to support families and individuals when terminality is inevitable and perhaps even the most loving choice. I believe that story-tellers can help in the palliative care world by sitting and hearing family stories, and by sharing stories with those in the throes of death and grief. I believe that after-care of grieving family can be helped simply by listening to their story. I feel that there could and should be a heftier after-care plan for those present during a loved one’s death. Wouldn’t it be wonderful if the arts became involved in some way. Music. Painting. Story-telling. Those disciplines combined with medicine sound to me like a holistic approach to help guide us in our end days.
Q: Is there a book, movie, piece of art, or another form of media that profoundly impacted your views on mortality?
There are several (which I will speak about in my talk) – but the big one that comes to mind is an old black & white film from 1939 called “On Borrowed Time.” Lionel Barrymore plays an old grandpa who traps Death – a cooly polite man by the name of “Mr. Brink” – in a tree. While Mr. Brink is in the tree, no one can die. Grandpa and his orphaned grandson feel that they have succeeded in living happily ever after now that death was not an issue – until they learn that death is a welcome end to suffering. A beautiful message and one that settled in my own soul many years ago, when I first saw this movie. The message eventually helped me let my own very sick son go with Mr. Brink.
Q: Fast forward a decade. If the objectives of the End Well Project are realized, how do you envision society’s attitude and practices surrounding the end of life experience?
My sincere wish for society’s attitude and practices surrounding the end of life experience is for people to have more intimate home deaths, home funerals, and to not be afraid of the body. I hope that we learn to treat death as a conclusion to a journey – that is as significant as someone’s birth. My wish for the dying is that they are talked through the process in a loving and gentle way – that they can let go of fear and settle into peace. I hope that we can have a “death plan,” the same way parents have a “birth plan.” My wish for the mourners is that our loved ones gather and want to hear the story. That we tell the story without fear or shame, and thereby help hold one another’s grieving hearts with an understanding that is currently not available.
J.J. Duncan will speak at the End Well Symposium on November 16, 2023.
J.J. Duncan is an Executive Producer of The Gentle Art of Swedish Death Cleaning and Bravo’s mega-hit: Project Runway. She is a writer, a health-care advocate, and a public speaker. She is also a mom, a wife-of-a wife, and an exuberant story teller at most any dinner party. In short – J.J. is busy.