Jonas Center Spotlight

Carolyn Jones: Defining Hope (Part 2)

In honor of November’s National Home Care and Hospice Month, we’re continuing our conversation with Carolyn Jones. Below Jones shares more about her newest endeavor, Defining Hope, a documentary film that explores how we view death and the important role that nurses play in end of life care.

Jonas Center: How do you think nurses can lead the movement to help patients make better end of life choices?

Jones: First, I think it’s critical to recognize the knowledge nurses have, and to respect their unique perspective. They are very often the person who has spent the most time with the patient and had the opportunity to witness family members and loved ones who are involved in the caregiving. So they have a good sense for what might work for this patient who is at the end of life. I believe that having palliative nurses be part of the conversation from the beginning of an illness, having them participate and be able to talk freely to patients about their choices would be so helpful when the time comes to make the really tough decisions. We often ask family members to make decisions that they are not equipped to make, at an emotionally wrought time in their lives. Nurses can help enormously in these times. But we need to give them a voice and bring them in early.

Jonas Center: What was your biggest goal in undertaking Defining Hope? Did that change throughout your time working on the project? What do you hope people take away from the film? What is the biggest lesson you have learned from this work?

Jones: When I started this project, I had hoped to come up with a path, some sort of manual that would be for everyone, that would show us how to get through the end-of-life better. It didn’t take too long to realize that end-of-life is incredibly individual and everyone has a different will to live, a different threshold for what they can endure, and different goals. So my idea for a how-to handbook went out the window early on.

As time went on, I realized that getting people to talk about the subject, normalizing this taboo topic through storytelling would be most helpful. My biggest goal for Defining Hope is to offer a film that reminds us that our time here is limited, and we will all be faced with death -- it’s a part of our lives. Knowing what makes life worth living for yourself and your loved ones will help enormously when end-of-life is near. I want to offer a film that allows us to witness how others are dealing with issues that we may face. I can’t help but think of Carole Bailey in the film who decided that she was finished with chemo, or Bert who wanted to die at home and his wife Lottie who had to learn to accept that. Or Carmen who learned to appreciate the wind outside her window at the very end of life. My biggest lesson, for me personally is – why wait? Knowing what makes life worth living can change the tenor of every day if we can just keep it in our consciousness. For me this project has been hugely transformative and I hope that people watching this film will focus on how extraordinary life is. To understand the world I was entering, I spent time as a volunteer at the hospice wing of Bellevue Hospital. Having the privilege to be with people at the end-of-life taught me so much about what is important. At the end, you know what mattered most to the people I have been with? Love. Having loved someone or being loved – that was the thing that mattered most. Love.

Jonas Center: You have talked a lot about the role of nurses in your own life. What tools and resources have they shared with you that you think would be helpful for others going through end-of-life planning for themselves or loved ones? 

Jones: There are many terrific resources for end-of-life planning and we share those on our websites: www.dyinginamerica.org and www.hope.film

 

 

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