Career oncology nurse, researcher and one of the founders of the Hope Matters project at The Sidney The Sidney Kimmel Comprehensive Cancer Center
Anna says the importance of hope in cancer care became especially clear to her in 2008, when she was working to help connect a cancer patient with a clinical trial.
“It was one of those suboptimal patient-physician interactions,” says Anne. Typically, the patient meets with the physician, and then Anna helps the patient fill out and sign the necessary paperwork. This patient was a man in his forties, with terrible leukemia who had agreed to participate in a clinical trial. “He was very sick and very sad, and the family was sad.” Anna says that the physician she was working with at the time was not responding to the emotion in the room or connecting well with the patient or his wife. “He was kind of looking down, and I was watching and sort of knowing this wasn’t going the right way. It wasn’t working.”
The physician left and the patient signed the paperwork, but when the patient was supposed to come back in two days to start the trial, he never showed up. This was especially odd because this patient had approached Anna about the trial. He was well versed about his cancer and the science behind the trial, and had initially been motivated and enthusiastic to join.
Anna had a bad feeling and thought he might have died, since he was very fragile medically. She tried to call him and his wife but got no response for two weeks, until one day the wife finally answered the phone. She must have seen the caller ID, because she yelled at Anna even before she had a chance to introduce herself.
“She yelled, ‘What? What? What? What do you want?’ And I knew, I knew the whole thing. It was a life-changing, soul-changing, career-changing moment.”
Over her many years working with cancer patients, Anna had taken part in a lot of difficult phone calls. However, this call was particularly hard. “She just kept screaming, ‘You left us no hope, How could we come back there? No hope! You left us no hope!’ That call haunts me to this very day.”
The only thing worse than so callously failing another person is not knowing exactly what you can do to prevent another failure the next time, according to Anna. She says it was not her best day working with a patient, but it was also not her worst day.
The patient’s wife told Anna that other hospitals and doctors had expressed similar opinions about how advanced the cancer was and how poor the chances were for survival. However, they at least left some hope.
This experience made Anna totally reexamine the role hope plays in cancer diagnoses and treatments. Anna says clinicians often do not know how to help patients find hope, especially when the prognosis is bad. They are reluctant to provide false hope and are equally adverse to taking away hope. Yet her many years working as a cancer clinician have taught her that hope is essential to the patient experience.
“Hope adds quality of life both to the physician and to the patient. It is the undercurrent of all we do in oncology. The same is true of all medicine. Hope transcends age, gender, health, status, and treatments.”
She added that perhaps one of the potential reasons why hope has been overlooked in the treatment regime is because it is difficult to measure and quantify.
“Hope is defined differently for everyone in the setting of bad news,” she says. “It was the same in the past when we tried to quantify pain. Today we have pain scales that make it easier for physicians to gauge how much pain a person is experiencing. Can we do the same with hope?”