By Damaris Christensen
Mosaics of Meaning
Working with cancer patients brings a sense of significance, identity, joy and grief
By Damaris Christensen
Zoom in as close as possible and most digital photos begin to look like mosaics. That close-up view, whether beautiful or chaotic-looking, isn’t fully appreciated without the perspective of distance, when the individual tiles blur into a more unitary whole. So it is, too, with our lives: As perspective changes, individual events and feelings can take on new meaning.
The discovery of a serious illness is frequently cause for patients and families to step back and examine the patterns in their lives. Similarly, perspective also shifts for the social workers, psycho-oncologists and chaplains who help people sort through the practical and existential questions that cancer raises. While the work of these professionals can sometimes be frustrating and full of heartache, most agree that walking alongside individuals who have cancer brings them a deep sense of perspective and meaning.
“A cancer diagnosis just shoves death right in your face,” says Debra Jarvis, an oncology chaplain with the Seattle Cancer Care Alliance (SCCA). Jarvis was diagnosed with stage II breast cancer in 2005, and was treated at the SCCA while she continued working. “And what you think about death is completely intertwined with what you think about life.” For people with cancer, she says, questions of identity and meaning come to the fore, as they navigate the limitations of their illness and the effects of their treatment.
Matthew Loscalzo, who is the executive director of the department of supportive care medicine at City of Hope, a comprehensive cancer center in Duarte, Calif., passionately advocates for social and mental health services to be better integrated into the U.S.’s fragmented health care system. People affected by cancer fare best when they find some sense of control, predictability, meaning and connectedness, notes Loscalzo, a past president of the American Psychosocial Oncology Society. Looking at cancer solely from a medical perspective, he says, “is the wrong end of the telescope.”
“Simply coming in and saying, ‘You have a disease and this is the treatment suggested,’ is only the tip of the iceberg,” explains social worker Louise Knight, the director of the Harry J. Duffey Family Patient and Family Services Program at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore. “Much of our work is helping [patients and families] sort out the implications of their choices,” she says. Those choices can include how to get or pay for treatment, where to live while receiving treatment away from home, or how to cope with any one of many social ills, like drug and alcohol abuse, domestic violence, poverty and untreated mental illness—problems “that are present in our culture and get transferred to our setting.” Sometimes, Knight says, there are no clear solutions.
Those who care for the spiritual, psychological and socioeconomic needs of cancer patients and their families say that one of the most difficult parts of their jobs is feeling unable to help. Sometimes the needed resources aren’t available. Sometimes people aren’t in a place where they can accept assistance. “What’s hardest is when [patients or families] don’t want help and you see them struggling,” says Janis Miller, a social worker at the Mayo Clinic Cancer Center in Rochester, Minn.
At times, people struggle to accept the realities of their illness. “The thing that is hardest for me is not the hard, tragic stories, but watching people so fearful of death they will ask for chemo in the casket,” says Jarvis. “Life becomes about keeping them alive, not living.” On the other hand, says Miller, some patients who have finished successful treatment can find it difficult “to step back into life, when they’re not really the same person anymore.”