For some cancer patients, the future is about those left behind
At City of Hope, doctors, nurses and social workers are committed to fighting with, and for, patients in their battle against cancer. That commitment doesn't fade even if the battle ultimately is lost.
Because control over the end of life can make an enormous difference to patients, as well as those left behind, City of Hope works hard to give patients that control, leading them through a process of discovery, of reflection, of legacy.
Such an approach is, in itself, a breakthrough.
“It’s really easy to avoid talking about death,” says Jeanelle Folbrecht, Ph.D., interim director of psychology at the Sheri & Les Biller Patient and Family Resource Center.
Even when the patient, his or her medical team and all of the family members agree that the goal has shifted from aggressively pursuing treatment to controlling pain, “it’s still so hard to say we’re at the end of life, that treatment is not going to work,” says Folbrecht. “Patients, families and sometimes even health-care professionals don’t want to upset people or say that a miracle is not going to happen or that a treatment is not going to be successful. It’s almost as if, if you talk about it, it might happen.”
Because family members are especially protective of each others’ emotions, they can make it harder to acknowledge the truth.
“Parents don't want to make the kids cry; the kids don’t want to make the parents cry,” Folbrecht says. “They don’t realize that walking through these emotions and grieving together can be the greatest gift they will ever give each other.”
At City of Hope, supportive care professionals such as clinical social workers, child life specialists and psychologists help patients deal with the emotional aspects of the impending final passage. They help patients regain control over their lives by finding value in their struggle with cancer and sharing their worries, memories and hopes with family and friends.
Through this "legacy program," patients confront practical considerations, such as their finances and who will care for their children. They also consider – as they explore the meaning of their lives – what messages and mementos they’d like to leave behind. They receive tools such as workbooks to draw out this meaning through questions that prompt sharing about their favorite memories and final wishes.
An important part of the process is a legacy project – which helps dying people memorialize what is important to them – and leave something behind that says who they were.
“It’s very important for the person who’s leaving to know they will be remembered,” says Folbrecht.
Some patients buy gifts or write letters or make scrapbooks for their family members. Sometimes they will create a “transitional object,” such as a pillow decorated with their handprint and a quote treasured by their spouse or child. “It’s a representation of them and a memory of them when they’re gone,” says Folbrecht, and provides a grieving family member with a tangible, huggable reminder that they are loved.
Folbrecht has witnessed the power of the legacy process in her own life.
Years ago, Folbrecht asked the children of a dying friend to share their favorite memories with their mother. “It started a conversation that rolled to a beautiful place where their mom heard their favorite memories, shared her own favorite memories and then shared her hopes, dreams and wishes for her kids.”
Years later, the children's father still marvels about what a positive impact such an outpouring had on all their lives, Folbrecht says.
“The family had a structure that organized communication at the end of life, which prompted them to stop and say: 'I think we know what’s going on here. I want you to know I love you and you’re important to me. This is what I hope for your future.’"
Adds Folbrecht: “This is the essence of legacy work."
In explaining the relationship she and her colleagues have with dying patients, Folbrecht is reminded of the opening scene in the film “Cliffhanger.” In it, Sylvester Stallone valiantly tries to rescue a woman from falling to her death. Though he cannot save her, he maintains eye contact as long as he can.
“It’s important that we don’t look away,” says Folbrecht, “so patients know they’re not going through this alone.”
A companion piece to this article, about one woman's determination to leave something of herself behind, can be found here.