There is a street in downtown Los Angeles named Hope Street. I’m not sure if it is named after a person—maybe someone’s mother or wife—or if it is named after the concept. I like to think it is the latter. That early Angelenos watched the sun rise over the eastern ridges of the San Gabriel Mountains, saw it set over the lip of the Pacific, and believed that where they lived was a place full of possibilities. A place of hope. I like the longitudinal idea of hope. The notion that we can pass it on to others.
Recently, I read an article in an online nursing magazine. It was an essay chronicling the struggle of a young woman who survived her colon cancer, had done well in fact, but now suffered from the limitations that her treatment presented—namely, unpredictable bowel problems that made it impossible for her to work. The article’s author was a nurse as well as a friend of the young woman’s, and she wondered what to say that could help. The Web site had a comments section, and another nurse responded with the story of a patient she had cared for with a similar disease pattern. The difference was that her patient died. The nurse commenter’s remarks were straight and to the point: quit your whining. She was certain the patient who died would gladly have exchanged the chronic side effects the other patient had if it meant she got to live. In other words, this nurse discounted the circumstances of suffering for the survivor.
I was tempted to add a comment of my own, asking, when did suffering become a contest, one in which only certain people—those who lose their fight with cancer—become the ones whose anguish we approve of? Why didn’t I respond? Because on reflection, I realized that at times I have done the same thing. Sometimes, in an effort to be supportive, I have offered basically the same advice: “Well, it could be worse.” As a method of psychological support, though, that strategy is flawed. Why slice away at hope by telling patients that things could be worse?
How does this story relate to hope? I use it as a little housekeeping toward making my point. Creating an environment of trust is the first step toward cultivating hope. By listening to patients tell their story without trying to “make it better,” we give them room to embrace their reality. In the article “Fostering hope in terminally ill patients,” Buckley and Herth suggest that before assessing patients’ perception of hope, we must first allow them to tell their story.1 Doing so is the first step toward creating an atmosphere of hope. Open communication helps maintain a hopeful state.
In that same article, they discuss the linguistic attributes of the word hope—that it is both a noun and a verb.1 “I have hope.” In this sentence, hope is a tangible item, something people know they possess. “I hope for a cure.” Here, hope is a verb, an action word. The patient is “doing” something. Buckley and Herth speak of the action of hope.1
How do we foster hope in patients? One approach is to shift the focus of hope. We can help patients by altering their expectation from that of being better to that of feeling better. We present them with a more achievable goal. “We can do a better job of controlling your pain.” “We can help you sleep at night.” “We can work at preventing or lessening your nausea.” A cancer diagnosis and treatment often limit the patient’s choices. Together with their oncologist, patients select the treatment plan, the cancer “road” they will follow. I tell patients that my role as an oncology nurse is to make the road as smooth as possible. That since I have helped other patients on this journey, I have strategies to eliminate or shorten any detours they might take. Again, their hope may shift from being better to managing symptoms so they feel better, thereby giving them the room to face their cancer. And I might shift the focus of hope from hope for a cure to hope for other things: to see a grandchild born, to make it to a wedding anniversary, to be free of pain. By setting goals that are attainable, I can help patients customize their hope.
Oncology nurses often worry about giving false hope. Often we have a clearer idea of the disease path than the patient or family has. At times we worry that by not correcting patients when they say they are hoping for a cure, we are complicit in a falsehood. I wonder if false hope is the same as a false positive. The flip side of that is the fear that if we take hope away from patients, they will “give up.” One way to address this possibility is simple: Ask, “What are you hoping for?” If the patient’s answer is unrealistic—“I’m hoping for a full cure”—our response might be, “We are going to do everything we can to work toward that goal, but if that doesn’t happen, what are you hoping for?” For some people hope is an anchor, something to hold them in place. For others it might be a balloon, something that lets them rise above the unthinkable. Ask, “What makes you feel hopeful?” If we can help a patient identify concrete solutions, with attainable goals, then we can make the road they are on a solid path. A Hope Street.
I recently attended a Wellness Community fundraiser dinner where I was introduced to a vibrant 60-something woman. She wore a beautiful gold medallion necklace. When I leaned close to admire it, she placed it my hand. “It’s beautiful,” I said. She told me, “My sister gave it to me to commemorate 10 years of being cancer free.” The word Hope was engraved on the front. I rubbed my thumb over the letters, feeling the ridges from the letters and the solid weight of the medallion. “Turn it over,” she said. On the back was a date and the words Dum spiro spero. I recognized the words. A friend, a fellow oncology nurse, has them written at the bottom of her e-mails. Many times I’ve intended to ask what the words meant, only to forget. “What does it mean?” I asked. I still held the beautiful necklace in my hand. She reached up and squeezed my hand and said the words: “Dum spiro spero.” Then she smiled and said, “It means, ‘While I breathe, I hope.’ ”
1. Buckley J, Herth K. Fostering hope in terminally ill patients. Nurs Stand. 2004;19(10):33-41.
1. What role do you think hope has in a patient’s outcome? Have you had a patient lose hope and “give up?” What might you say in this situation to try to preserve a sense of hope?
2. Do you talk to patients and their families about strategies for maintaining hope?
3. What is the impact of spirituality on the presence of hope? Do you find that patients with a faith-based perspective are able to maintain hope?
Ann Brady is Symptom Management Care Coordinator at the Cancer Center, Huntington Hospital, Pasadena, California.