Submitted by Lois Ustanko, President, Honoring Choices North Dakota
In the days between the announcement of “He asked me to be his wife and I said ‘yes’” and the moment when she says “I do”, most fathers reflect on the impact he’s had on forming this beautiful woman he calls his daughter. In that breathless moment when the attending physician placed this wet, wiggling pink bundle into his big, shaking hands and the father peered into those tiny blue eyes, he knew he would never stop loving her. He ponders whether he has been the kind of father who taught her more by example than by words to make the world a better place. She’s grown into a truly amazing and brilliant young woman who will be a stunning bride and an awesome mother to the best grandchildren this world has ever known.
From the moment he was diagnosed with terminal cancer, this loving father’s goal was to witness his daughter’s wedding. Imagine the shock and disappointment when he learns this cancer is so aggressive that he will not survive to her wedding day, in fact his life will be limited to a few last days or weeks spent in the hospital. But a hospital’s job is not just to save lives; dedicated staff and providers strive to give patients the chance to live their last days as fully and comfortably as possible, so at times hospitals like Sanford Health in Fargo host a wedding. The couple and their family can don their formal attire, their pastor can preside, the kitchen can provide a cake and the nurses will manage the patient’s symptoms then lovingly place him in a chair so he can go to the chapel for this very special day. Sometimes he is so weak and so ill that the ceremony takes place right in the patient room.
Nurses get choked up when they think about these unforgettable families making difficult choices in challenging times. Expedite the wedding and hold it at the hospital so dad can be present, it’s a small token from a devoted daughter who will long for and grieve the loss of her father all the days of her life. Grateful families often say “thank you” for helping their dad participate in this phenomenal milestone and for ensuring he experienced a “good death”.
During the last three to five years we’ve been witnessing a cultural shift in the way patients are embracing their mortality, choosing quality of life over quantity of days in the final stages of a terminal illness. With the assistance of groups such as Honoring Choices North Dakota and Certified Advance Care Planning Facilitators, more patients are considering how they want to spend their last days. This cultural shift in how we plan to live when time is limited is advanced by best-selling books, films, newspaper articles and other media accounts which stress the importance of having critical conversations. Americans are becoming more aware of the need to plan for and manage the end-of-life by completing healthcare directives and by accessing the growing number of palliative care and hospice resources.
Wednesday, November 1st was National Hospice Day, and Hospice of the Red River Valley in partnership with Sanford Health and Essentia Health hosted a screening of the documentary “Defining Hope.” Esteemed filmmaker and documentary photographer Carolyn Jones who released The American Nurse in 2014 followed a number of people as they grappled with medical and moral questions about wellness, sickness, dying and living. After five years of spending time with them, Jones released her award winning Defining Hope. In this video tribute to nurses, Jones identifies that nurses have an important role in helping Americans in navigating new life-saving technologies that force us to weigh the quality versus the quantity of life. She was inspired to create this documentary by her chemo nurse after her own fight with breast cancer.
In this documentary, Jones follows two nurses as they interact with patients receiving hospice and palliative care. Diane Ryan is a staff nurse at Calvary Hospital, a Bronx facility devoted to hospice and palliative care. Gilbert Oakley works for the Visiting Nurse Service of New York. Their sense of fulfillment in the work they are doing is evident in their interactions with patients and in the messages relayed in their interviews.
“Defining Hope” is a documentary that interlaces the stories of eight patients with life-threatening illnesses and the nurses who care for them as they make choices about how they want to live, how much medical intervention they are willing to accept, what they hope for and how that hope evolves as their disease progresses. It reinforces the strength of the will to live and to be hopefully optimistic as each patient works to define what “quality of life” really means.
In the film we are introduced to patients across the life continuum from a brave 12-year-old boy coping with a heart transplant who just wants to live, to 23-year-old Alena faced with a choice of undergoing a risky brain surgery that threatens to destroy her short-term memory, and on to 95-year-old Berthold who is living with an elderly wife who struggles to honor his wish of dying peacefully at home. Some of the most profound messages come from Diane Ryan who is caring for end-stage cancer patients in the palliative care unit. She reveals that as a former ER nurse, she was struck by the cruelty of the use of invasive procedures in that setting at any cost and the loss of dignity that accompanied this approach. As she talks about the gentler, more supportive palliative care approach she says, “They’ve gotten so much treatment that their bodies can’t take it anymore.” In an ironic twist, we learn that she truly understands what many of her cancer patients have been through not only from the perspective of a professional nurse caregiver but also as patient who has waged a war with ovarian cancer herself and who is facing her own mortality too.
Death is an inevitable and natural part of life. Nurses more than any health professional see the hard philosophical and physical choices people must make when they reach the crossroads between life and death because they are with patients around the clock. It can be difficult for patients and their families to talk about their mortality but nurses can be instrumental in getting these conversations going. When we talk openly with patients and their families and learn about their preferences for care, we can promote dignity in living and create a meaningful experience for however many days they have. Facilitated conversations are essential because what makes life worth living and what generates hope is unique to each patient we serve. Films such as Defining Hope can be a platform for opening this dialogue.
In every setting where patients encounter care, a nurse has the opportunity to stress the importance of these conversations, of identifying an agent, and of defining preferences for care within a healthcare directive. Nurses can provide comfort and dignity by being present with patients and their loved ones on this journey. And nurses can advocate for palliative and hospice care which offers the patient a chance to spend the end of life as well as possible. Defining Hope both educates and enlightens us about the ways palliative care and hospice empowers patients and their loved ones to live out their lives according to their preferences. The film helps people understand that they have choices when deciding on care when confronted with life threatening illness.
Defining Hope was 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, and Walden University. The messages of the patients and nurses in this film are so powerful and persuasive that every health professional, clergy member, and family caregiver should look for the opportunity to see Defining Hope.
To learn more about creating a culture where advance care planning is a normal part of the care we provide every day, go to www.honoringchoicesnd.org Information about upcoming First Steps Advance Care Planning Facilitator courses are posted on this site. You are also invited to get involved with one of the four groups working to create awareness and to implement processes statewide that make advance care planning accessible to all citizens.