Jonas Center Spotlight

Carolyn Jones: Defining Hope (Part 1)

Award-winning photographer and filmmaker Carolyn Jones is passionate about telling the stories of nurses. Following on the success of The American Nurse Project, which raised awareness on the critical role of nurses in our country, Ms. Jones’s newest endeavor, Defining Hope, is a documentary film that explores how we view death and the importance of nurses in starting conversations with families and patients. Ahead of the film’s release in November, we spoke with Ms. Jones on the journey that led her to create this film.

Jonas Center: Your background is in photography and documentary filmmaking; tell us how you became involved with portraying nursing through the American Nurse Project.

Jones: I have always been interested in telling stories of people who inspire. When I started working on a book to celebrate nurses, I had no idea how rich that world would be. I had been on the receiving end of great care from a gifted nurse, and yet I really didn’t know anything about nurses. The deeper I got into their world, the more I learned about difficult issues in this country – everything from poverty, the prison system, the complications faced by returning war veterans -- to aging. I saw that nurses have a unique and holistic understanding of those issues and many more -- and how they affect our bodies, our families, our communities and ultimately the world. Seeing these issues through their lens, meant seeing the issues at face value without bias. I wanted to share what I had learned.

Jonas Center: You have mentioned that your time working on the American Nurse Project prompted you to take on the Defining Hope project – can you talk more about what you learned about nursing that inspired you to look at nursing’s role in end of life care?

Jones: As I went across the country talking to nurses, I often asked about the biggest problems they face in their work. Very often those conversations became conversations about the fact that we’re not dying very well in this country. But the nurses made me feel that if we could just educate people to have conversations and think about our choices, to have some agency over our own end-of-life experience, then we could make it better. I realized that I wanted to understand the end-of-life experience from the nursing perspective, and that’s when the website was born. As I learned how nurses work with patients and families, the things they care about, the way they advocate for the patient, I realized what an important role nurses play at the end of life. I discovered that often nurses don’t have the opportunity to share that wisdom, they don’t have as much of a voice about choices at the end-of-life that I believe they can, and should have.

Jonas Center: You have talked about the impetus for this film being that people don’t talk enough about dying and you want that to change. How did you navigate gaining support for a film that focuses on a topic that most people don’t want to discuss?

Jones: That’s a great question! It’s so true, talking about death and end-of-life issues is just not on the top of anyone’s list. I knew it was going to be a challenge to create this project. I had met Mr. and Mrs. Jonas when my book The American Nurse was published. They came to a screening when the documentary for that project came out, and they struck me as people who might be brave enough to dive into this topic. I was lucky to get to meet with Darlene Curley and Mr. and Mrs. Jonas and tell them what I wanted to do. They listened, they truly understood what was driving me, and they supported the project. Without their support I wouldn’t have been able to get this project off the ground. As a documentary filmmaker, getting that first commitment is the hardest – and it means so much. Documentary filmmaking requires a certain amount of risk taking – you don’t know where it will really lead, it’s not scripted, it’s a journey searching for truth and finding people brave enough to go on that journey with you can be challenging. I am incredibly lucky to have found Darlene and Mr. and Mrs. Jonas, they supported the research for the film, which became a much-used website of rich material of nurses talking about end-of-life issues. And then they jumped in to support the film as well. The second organization to come onboard was the American Nurses Foundation, and then Jeannie Patz Blaustein. I was on my way. I can’t tell you how meaningful the Jonas support has been.

Jonas Center: In your work on Defining Hope, what have you learned about the impact nurses can have on end of life care? What can we as patients learn from their unique knowledge and outlook?

Jones: Nurses can have enormous impact on end-of-life care. Our choices are complex, knowing how the body will react to more treatment, radiation, a new drug, another surgery, these are things nurses can help us with. Since medicine is so specialized it’s complicated to understand how choices made will affect our bodies, as well as our loved ones who may be taking care of us at home, or will be helping with medication or dealing with symptom management. Nurses can help explain that to us. And more than that – bringing palliative care nurses into the conversation sooner can help us make choices that will lead us to what we want. Debbie LaFond in Defining Hope tells us that there is a lot of misconception about palliative care and she is so right. She reminds us that to palliate is to alleviate, to ease the pain and relieve the burden of an illness. When we get a cancer diagnosis for example, bringing in a palliative care nurse in the beginning would go a long way to making the entire journey of cancer better. As patients we can learn to ask nurses to give us their opinion, we can ask for palliative care nurses to participate in tough conversations, and we can listen to their analysis of what we might be facing. If we do, we can make better choices.

Also, I hope that nurses will give family members a chance to see death whenever possible. We become better educated when we can see what chest compression, intubation and some of the life-saving procedures that we do – really look like. We don’t need to be protected; We need to be educated.

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