Defining Hope follows eight patients with life-threatening illness, and the nurses who guide them to make critical choices along the way as they face death, embrace hope, and ultimately redefine what makes life worth living.

Interview with Director Carolyn Jones

Main image: Berthold in his Home

Why did you make your film?

Defining Hope started with a project called The American Nurse. I photographed, interviewed and filmed nurses all across America for a book, a website and a documentary. I dove into issues that we’re facing in our country: poverty, the prison system, aging, returning war veterans and many others. During the course of the 4 years that I worked on that project, I often asked nurses what they thought some of the biggest issues are that we need to tackle. They spoke a lot about the fact that we’re not dying very well in America, and we need to be educated to have more control over our end-of-life choices.

Imagine I’m a member of the audience. Why should I watch this film?

We are all going to die, 100% of us are going to face that reality at some point. The more we know about it, the better choices we can make and the better we can make that experience for ourselves and our loved ones. The stories in this film can offer examples of what people with life threatening Illness are doing, and what kind of decisions they’re making. But there’s another reason to watch this film. As I was preparing for the film, I spent a year volunteering at Bellevue Hospital in New York City on the hospice floor, and I learned a few things.

I saw that often as people got close to the end of life, they appreciated life more, the wind in the trees, the birds, the way the clouds move through the sky. It was beautiful to witness. When I spoke to people, they talked about the love in their lives, being loved, or loving others was so important and I couldn’t help but wonder - do we have to be at the end of life to appreciate our lives and the people we love? So this film became more about what makes life worth living - and that’s a wonderful question to ask yourself.

How do personal and universal themes work in your film?

I have certainly learned that this is an intensely personal journey and each of us will go through the end-of-life experience in their own unique way. There is no rule book to be followed or timeline that we can grasp. So many things make it a unique journey; including culture, religion, age, and will to live.

How have the script and film evolved over the course of their development?

With a documentary of this nature there is no script. The film unfolded as I followed the subjects. I met the nurses and chose to follow them into their world and meet the patients who were comfortable letting me witness their journey. What did evolve was the perspective. I started the project with a desire to put the power, the decision making process back in the hands of the patient. All too often I think we guilt a patient into fighting an illness with technology way beyond where they wanted to go.

As miraculous as our technologies are, they can prolong the dying process rather than prolonging life, and so you end up with a patient who is fighting for their life because someone else is not ready to let them go. I wanted to make a film that would put the power of decision making back in the hands of the patient. Initially I thought about shooting the entire film from the perspective of the patient only - but quickly realized that I needed to evolve and capture the family members and health care professionals who were supporting the patient as well. So I had to let that idea go.

What type of feedback have you received so far?

The feedback has been emotional - very often people tell me about the death of a parent, a child, a loved one after they see the film. The film seems to free up some of the conversations that we are often uncomfortable with - people want to share their stories. This film wants to help jumpstart the conversation about end of life - so it’s doing what we hoped.

Has the feedback surprised or challenged your point of view?

The feedback to the film has mirrored by own experience with this topic. It has opened me up personally and shown me a different way of thinking about death, so when people openly tell me about their very personal experiences, it seems natural. Death will happen to us all, and sharing experiences about it can help us understand the process. Unfortunately, it’s just so darn uncomfortable to talk about that we need a nudge, an assist to open that door.

Defining Hope - Diane finishing 40 miles

What are you looking to achieve by having your film more visible on www.wearemovingstories.com?

We want to help normalize the conversation about death, so being more visible and having a chance to answer these questions is a marvelous opportunity to have our film and this topic explored by a wider audience.

Who do you need to come on board (producers, sales agents, buyers, distributors, film festival directors, journalists) to amplify this film’s message?

We are lucky to have a wonderful event happening on November 1, the first day of National Hospice and Palliative Care month. We will be showing the film in more than 100 locations across the country, most of them theaters. We’re eager to find a partner who will help us distribute the film after November 1 to all of the organizations who are asking to use the film as a tool to get people motivated to designate a health proxy, or fill out an advance directive, or to know what their loved ones might want.

What type of impact and/or reception would you like this film to have?

When you make a film about the end of life you have a lot of people assuming that it will be sad and dark. And yet, we discovered that there is a lot of joy when you think about what makes life worth living. I hope the film makes people feel good, lets them focus on what’s possible in their lives and opens doors to conversations. I want the film to be used as a tool whenever possible.

What’s a key question that will help spark a debate or begin a conversation about this film?

What makes life worth living?

Would you like to add anything else?

While I was working on this film, both of my parents died within 9 days of one another. The knowledge I had gained from the families, nurses and health care professionals that I have met along the way made that experience not only bearable — but in some ways quite beautiful. I found enormous comfort and peace because of this work and I want others to feel that too. It was such a gift for me to know what my parents wanted, to be confident to follow through with their wishes, and to be familiar with the path that we were on. I want to share that.

What other projects are the key creatives developing or working on now?

We are currently working on a project about global nurses. Caring for others is universal -- it transcends religion, skin color, politics, virtually everything. I’ve always been interested in themes that show us what we have in common with one another - I can’t imagine a more rewarding journey than to discover what boundaries can be broken down by caring for others.

Interview: October 2017

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We Are Moving Stories embraces new voices in drama, documentary, animation, TV, web series and music video. If you have just made a film - we'd love to hear from you. Or if you know a filmmaker - can you recommend us? More info: Carmela

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Defining Hope

Length: 78 minutes

Director: Carolyn Jones

Producer: Lisa Frank

Writer: NA - Documentary

About the writer, director and producer:

Director bio:

Carolyn Jones is an award-winning photographer and filmmaker who specializes in telling stories that shed light on issues of global concern. From people “living positively” with AIDS to women artisans supporting entire communities and nurses on the frontlines of our healthcare system, Carolyn Jones has devoted her career to celebrating invisible populations and breaking down barriers. Her most widely acclaimed book publications include Living Proof: Courage in the Face of AIDS and The American Nurse, which led to a feature documentary included in the U.S. State Department's American Film Showcase.

Key cast: Diane Ryan, RN

Barbara Stephenson

Carmen Hernandez

Gilbert Oakley, RN

Berthold & Charlotte Cohen

Rudolph Bilotti, Sr.

JoAnn Nayer-Grutza, RN, NP-C

Deborah LaFond, DNP

Alena Sydnor

Looking for (producers, sales agents, buyers, distributors, film festival directors, journalists): N/A

Social media handles:

Facebook: https://www.facebook.com/defininghopefilm/

Twitter: @defining__hope (two underscores)

Instagram: @defininghope

Defining Hope is made possible through the generous support of the Jonas Center for Nursing and Veterans Healthcare, the American Nurses Foundation, Jeannie Patz Blaustein, The E. Rhodes and Leona B. Carpenter Foundation, Walden University and The Fledging Fund.

DISTRIBUTED in association with: KAOS Connect and Screenvision Media

Where will the film screen in the next month?

There are over 100 screening across the country in November, during National Hospice and Palliative Care Month. To find a screening near you, or request a screening in your local movie theater, please visit: http://hope.film/screenings/