Credits fire in her soul for amazing ability to tell their stories.
Carolyn Jones, award-winning photographer and filmmaker for The American Nurse
project, was inducted as an honorary member
of the Honor Society of Nursing, Sigma Theta Tau International during the 2015 Biennial Convention.
Her feature-length documentary “The American Nurse” premiered during National Nurses Week in 2014 and has since been viewed to wide acclaim across the United States and in Russia. The film followed release of her book The American Nurse: Photographs and Interviews
During the four years she interviewed nurses for the film and book, Jones learned how difficult it is for Americans to discuss issues related to death and dying. “I’m all about talking about things no one wants to talk about,” Jones says, “so it was a perfect fit for me to dive in and try to offer a way to navigate through this tough topic.”
“Dying in America
” (working title), to be released in 2017, documents the stories of patients in the ICU, a hospital hospice unit, a pediatric hospital, and at home who are facing end-of-life decisions.
In this Q&A, Jones talks about her inspiration for and challenges in filming “Dying in America”; the nurse who helped her cope with chemotherapy after breast cancer surgery; her trip to Russia with the American Film Showcase; and the impact The American Nurse has had on her life.
While interviewing nurses for The American Nurse project, you learned that Americans have a hard time talking about death and dying. Tell us about your inspiration for producing the film “Dying in America.”
I started working with nurses in 2011 while creating the book and film “The American Nurse.” That project took me all over the country, talking to nurses from all walks of life who were caring for a diverse group of patients. Those conversations led to nurses sharing some of the most profound experiences they have had, where their frustrations lie, what the challenges are, and how complicated end of life has become. We talked a lot about what actually helps patients and their families during this inevitable stage of life. How can we make this process better for everyone?
By entering the world of nurses, I felt as though I had gained access to a world that I never knew existed. I wanted others to see what I have seen, to hear from nurses and be educated about ways to make the dying process better. My own parents are 87 and 92 years old, and I have had very little dialogue with them about end of life. The conversations that we did have were uncomfortable and awkward. I'm all about talking about things no one wants to talk about—so it was a perfect fit for me to dive in and try to offer a way to navigate through this tough topic.
Once I started talking to nurses and health care providers who specifically deal with end-of-life issues every day, there was no turning back. I knew that I needed to make a film that captures some of the experiences people are having at the end of life and illuminates some of the choices we have as patients. RNL:
Describe the basic steps involved in the production of the “Dying in America” film. Where are you now in that process?
We have just started shooting the film. We have had the privilege to film at Calvary Hospital [Bronx, New York, USA], where we were able to get an inside look at the end of life in a hospital hospice unit. We met families dealing with all kinds of challenges as they make choices about how to live the rest of their lives, whether or not to continue medication, whether it makes sense to try to go home—in general, how to spend the remainder of their days with grace. We then headed to Children's National in Washington, D.C., capturing the story of children and their families as they face impossible choices. From there, we will travel to The Johns Hopkins Hospital [Baltimore, Maryland], where we will capture the story of patients in the ICU, and then on to Oregon, where we will follow home health nurses. We hope to be finished shooting by spring of this year; then we will start the editing process. I'm optimistic that we will have a film in our hands by the end of the year—that's the goal!
What challenges have you faced so far in developing this project?
I benefit greatly from the wonderful work that is being done with regard to this topic right now. There is so much talk about end of life in the media, with wonderful books being published and conversations happening. That helps enormously. With so many baby boomers with aging parents, there is a zeitgeist and a willingness to discuss the topic that wasn't there as recently as two years ago. So that makes this project timely.
Funding any documentary film is challenging; funding one about the end of life is doubly so! I was meeting a lot of people who want to hear about the project and talk about it—but not too many that were willing to support it financially. I am really proud to say that we have the Jonas Center for Nursing and Veterans Healthcare
and the American Nurses Foundation
as our funders, and they are brave souls to dive into this arena with us! No matter how much material is out there, this is a tough topic to be sure. Capturing the stories of patients and families is heart-wrenching, and yet, I find that people want to tell their stories. They want the death of their loved one to make a difference, and they want to share with others what they have learned going through the process. So there is an openness to the people I meet at this stage of life. It is a privilege to be a part of it.
I am a huge believer in the power of storytelling. Since most of us no longer have multiple generations under one roof, it's important that we turn to one another in our communities to shed light on life's challenges. Most of us don't benefit from watching a grandmother or grandfather die at home, so we miss the opportunity not only to understand the process of dying, but also to be reminded that our own lives are part of a cycle. I think there are great advantages in being reminded how precious life is.
We are still hoping that people will get involved with the project and give what they can to our effort. We have a donate button on our website
, and we would love to have people donate what they can to show support for what we are trying to do. We have big hopes for outreach when the film is finished—we would like to see this film go far and wide!
Dying in America is described as a multimedia documentary project. Will the project include a book in addition to the film and website?
At the moment, the Dying in America project is a website, a film, and also the source of unique educational material. The American Nurses Foundation is spearheading the creation of educational materials that will use stories from the film. There may very well be a book in this project; we are just getting started, so I will have to wait and see what other media is borne out of our journey.
You recently traveled to Russia for 10 days with the U.S. Department of State’s American Film Showcase
. Tell us about your trip—was the experience what you expected?
Having the chance to take “The American Nurse” to Russia and screen the film in four different cities to many different audiences was transformative for me. I wasn't at all sure the Russian audience would be interested in a film called “The American Nurse,” but I couldn't have been more wrong. The questions the audiences asked were provocative and reminded me how much autonomy and freedom we have in the United States, not just for nurses but also for filmmakers.
In almost every audience, someone would stand up and say some variation of "I had no idea Americans could be so compassionate/caring/generous." It really drove home the power of the documentary film to change minds and opinions and put a serious fire in my soul to make this next film about end of life as powerful and beautiful as I can. I have a desire to help move the needle on how Americans think about death, and I have a wonderful opportunity to do that.
You have said that a nurse you met after breast cancer surgery inspired you to develop The American Nurse project. When was your surgery? How did Joanne Staha help you?
My surgery was 10 years ago, I'm happy to say! Out of all of the wonderful people who helped me get through that period, it was my oncology nurse, Joanne, who did the most for me emotionally. I managed to get through the surgeries and the radiation treatments OK, but when it came time to have chemo and I started losing every hair on my body, I felt as though I was wearing my illness on the outside and everyone could see it. It made me feel different, odd—as though life would never be quite the same again. But somehow, through humor mostly, Joanne made me feel normal. She made me feel confident that my life would at some point be back to normal, and all would be OK. I always wondered how she knew what to do and what to say to me. How did she know when it was OK to joke? How did she know when it was OK to cry? I started to think that being with people during such intimate times of their lives gives health care providers a gift of understanding human nature that is unique. I was right about that.
What are you most proud of in relation to The American Nurse project?
I'm most proud when nurses say to me, "You reminded me why I went into this profession." I love that we were able to create a book and film that honor a profession that I have so much respect for. I think nurses are treasures of our society, and the knowledge they have about how we live and die is absolutely vital to our country.
I have enormous gratitude for the nurses and health care providers who have shared their stories with me. My life is richer because of it. My understanding of how precious our time is on this planet has been heightened, my love of my family deepened. I have been reminded of the fact that life is a cycle with a beginning, middle, and end. It can be cut short at any moment. I see things a bit clearer now, having spent so much time with nurses. How lucky is that?
For more information, see websites for Dying in America
and The American Nurse