Connie’s request was not unique. All around the world video is being used to help people who are aware that, because of a terminal illness, their lives are almost over. Fortunately, these people do not have to face the challenges of dying alone. Today, there are literally thousands of hospice organizations all around the world that offer palliative care, which improves the quality of life for those dying from a terminal illness by relieving pain and providing emotional and spiritual support.
The hospice movement is fairly modern, tracing its beginnings to the work of British physician Dr. Cicely Saunders and Swiss psychiatrist Dr. Elisabeth Kübler-Ross. According to the Hospice of Michigan website (www.hom.org/ movement.asp), “The first hospice in America, the Connecticut Hospice, opened in 1974, followed shortly by an inpatient hospice at Yale Medical Center and a hospice program in Marin County, California. Four years later, the U.S. Department of Health, Education and Welfare [now the Department of Health and Human Services] published a report citing hospice as a viable concept of care for terminally ill people and their families. … In the early 1980s, Congress created legislation establishing Medicare coverage for hospice care. The Medicare Hospice Benefit was made permanent in 1986. Today most states also provide hospice Medicaid coverage.”
One of the main concepts of hospice, as best expressed by Saunders, is this: “We do not have to cure to heal.” I believe that one of the most healing tools used by many hospices is video. It is interesting that the growth of the modern video industry was occurring about the same time as hospice was becoming established as a viable part of the healthcare industry. It was inevitable that these two movements should discover each other. Carrie Dunkley, clinical liaison for Saint Jude Hospice in Oakdale, Minn., says, “I’ve seen the value firsthand of providing a life legacy video.” She notes that in her experience, “Video was used on a regular basis in California, whereas here in Minnesota people in the healthcare field haven’t yet recognized its importance.” She believes so strongly in the importance of video that she would like to see life legacy videos as an integral part of every hospice. To make this happen, Dunkley encourages video biography professionals to look into “targeting this market and educating people in the healthcare community to see the importance of video at the end of life.”
One video biography professional who has actively been involved in using his skills with people in palliative care is Canadian documentary filmmaker Dan Curtis. It was his work on the Bearing Witness and Caregivers film series, dealing with people with life-threatening illnesses, that opened his eyes to the importance of using his skills as a documentary filmmaker for individuals facing terminal illnesses. As a result of that experience, Curtis has set up a program in the Victoria Hospice to train others to record life stories on audio. Curtis has also used his skills to produce video biographies of those in palliative care. The one thing that he stresses is patience, as getting hospice professionals to see the value of recording these stories takes time. He also stresses that this special area of video production is not for everyone. But for those who see the value of using video in this way, the rewards are many. Perhaps the real value of producing these videos is the impact that it has on us as videographers. Not only will it be a reminder to us of the “fragility of life,” it will also be “deeply satisfying” as we realize the impact our work will have.
If a person is considering getting into this field, Curtis suggests that he or she needs to be comfortable around people who are not well and who are experiencing the effects of their disease. It’s not easy, and not everyone can handle this type of environment. He also stresses the importance of having “extraordinary patience,” as there will be appointments that need to be changed due to a person not feeling well or having other interruptions. This is not the kind of work that a “Type A” personality can easily deal with. It’s also important to be comfortable dealing with intense emotions and understanding the importance of having a relationship with professional counselors that can be brought in “if you find yourself in a difficult situation.” Curtis is very clear that this “cannot be treated as just another market” for us to get into, but it has to be approached in a very sensitive and compassionate way.
For further insight on getting involved with hospice, I recommend checking out Curtis’ blog, Life Stories and Palliative Care: Your Questions Answered, Part 1 and Part 2 of the 2-part series.
My friend Connie died this past October. But her goal was accomplished, and she was able to see the impact of her “legacy of values” video on her family. When she saw it, she was on her death bed, just a shadow of her former vibrant self. Her son said it best when he finished watching the video with his mom. He bent over her, kissed her gently on the cheek, and said, “Thank you for this priceless legacy.” Even though it was the end of her life, because of video, it was not the end of her story!
Here is Connie’s endorsement of video biographies on Vimeo:
Alan Naumann (alan at memoryvision.tv) is co-author, with Melonie Jeska, of The Complete Guide to Video Biographies, a comprehensive set of training materials for professional video producers. A featured speaker at WEVA Expo 2004–2010 and a two-time EventDV 25 honoree, he is based in Minneapolis.