NEW ORLEANS – Hope plays an important role in the experience of cancer patients, especially those with poor prognoses, and it often follows an unexpected trajectory.
These were the findings of several studies presented at the annual conference of the American Psychosocial Oncology Society.
“While patients have a hard time defining hope, they almost always know exactly what it means to them, and they usually define its opposite as 'giving up,'” said Amy Pearson of the Lung Cancer Alliance in Washington. Her study was conducted with the National Brain Tumor Society and the Pancreatic Cancer Action Network.
Meredith Cammarata and colleagues from Mount Sinai Hospital in New York added that hope has been described as the ability to acquire belief in one's ability to control one's circumstances, a positive expectation for goal attainment, belief in possibilities for the future, and belief that one's present situation can be modified–that there is a way out of difficulties.
Others have suggested that hope is an experiential process; a relational process; a rational process; or a spiritual and transcendent process that might be determined by one's faith and belief or one's life experiences, her poster noted.
Studies further indicate that hope exists along a continuum, with goals ranging from cure to comfortable death; that hope is fluid and changes throughout the course of the illness; and that hope is dynamic, beginning with one's reaction to a diagnosis, according to Ms. Pearson's study, which examined this “hope trajectory” in 15 long-term survivors of lung, brain, and pancreatic cancers.
Although the 5-year survival rates for these cancers are approximately 30%, 15%, and 5%, respectively, the subjects in the study had survival that was double the median survival time for their tumor type. Therefore, the lung cancer survivors were required to live at least 34 months, but actually lived 4-12 years; the brain tumor survivors were required to live at least 30 months, but lived 8-21 years; and the pancreatic cancer survivors were required live at least 1 year, but actually lived 3-14 years. “We sought to better understand the meaning of hope, the role hope plays, and what contributes to hope or takes it away from these patients,” she said.
The research was based on semistructured 1-hour interviews. Patients also completed an online version of the Herth Hope Index, a validated 12-item scale. From their analysis, three major themes emerged: taking control, having faith, and finding meaning.
All of the patients took at least one action involving treatment decision making. Ten sought second opinions, five researched clinical trials (and three participated), three insisted on off-label treatment, and two performed research to confirm protocols and doctors' decisions. Several continued to work and take other measures to “normalize” their lives. They protected themselves through avoidance of “negative people” and avoidance of negative information. Some made healthy lifestyle changes, which they later attributed to saving their lives.
Family, Faith Are the Main Sources
One-third identified faith as the most important factor in finding hope and in coping, and the majority called faith important. Ten said that their diagnosis had changed their lives for the better or for “a reason.” Virtually all became part of a peer-support network to engender hope in other patients.
The most frequently mentioned sources of hope were family members, church and/or faith, and the medical personnel who treated them. Things that seemed to “take hope away” included dismal research statistics, negative medical personnel, death of other survivors, and setbacks in disease status.
The study validated that patients want to maintain hope–and can do so, especially when the oncology team understands the individual patient's beliefs and helps foster that patient's version of hope. (See box below.)
Other investigators illustrated how the patient's “trajectory of hope” does not necessarily correspond with their prognosis or treatment response.
Strong religious affiliation, a supportive family, cancer prognosis, and treatment plan are “not always associated with hope in the manner in which we would expect them to be,” said Ms. Cammarata. She and her colleagues presented the following cases to illustrate:
▸ Patient No. 1 had acute myeloid leukemia and expressed minimal hope from the time of diagnosis. “Instead of focusing on getting better, she ruminated on her symptoms and the possibility of relapse,” the researchers noted. As the treatment plan and bone marrow transplant team became positive about her diagnosis, she remained hopeless. Even in remission, she refused to leave the house and obsessed over relapse. Despite having a loving support system, she was unable to accept and benefit from their support.” The hope trajectory, which plotted the patient's expression of hope against the treatment course, showed that her hope plummeted continuously from baseline, with the curve continuing to fall even when the transplant appeared to be working.