U-M expert discusses ways to reconsider survivors' guilt
Once cancer treatment ends, many patients report a lingering sense of guilt -- for the demands the disease placed on their families, for behaviors that they believe (mistakenly or not) may have caused the cancer, or even just simply for having survived when others didn't.
We talked about this with Brad Zebrack, Ph.D., M.S.W., M.P.H., a University of Michigan associate professor of social work whose research focuses on the psychological and social impact of cancer on long-term survivors. Here's what he had to say.
Can you tell us what you've learned about this notion of survivors' guilt -- that some people feel guilty for living when other people die of cancer?
Cancer survivors use the word "guilt," but the scientist in me is skeptical. When people say they feel guilty about surviving, I think that the comment is really more about an existential crisis. It's about seeking a purpose in life: What is my life about, given that I've survived and others haven't?
You don't think survivors' guilt really exists?
It exists because cancer survivors say it exists, but I think "guilt" may be the wrong word to describe what's going on. Guilt is a detrimental emotion that can lead to depression or the possibility that patients may decide to go off their treatment regimens. There isn't any evidence to show that something called "survivors' guilt" leads to that sort of behavior. In my interviews with patients, many say they feel guilty, but ultimately they often talk about a more positive -- and potentially transformative -- existential experience of determining what reasons they have to go on living.
So survivors' guilt may be beneficial?
I think survivors' guilt has been assigned a very negative connotation. But if you consider it as a factor that pushes people to have a greater appreciation for life and to take one day at a time, it could be beneficial. A lot of times people talk about living on and doing work in honor of others. That, to me, sounds like a potentially positive experience.
In a more practical sense, though, cancer imposes burdens on patients and families. What abut the guilt that surrounds those issues?
Guilt sometimes comes into play if patients feel they've become a burden on their families or caregivers. If that's the case, I would encourage patients to bring up these issues and discuss them with family members. The financial implications of cancer can also play a role in this respect. If you find you can't shake these feelings, it may be helpful to involve a social worker in the conversation. It may also be helpful to consider family counseling to help adjust to life after cancer. A lot of times patients and family members expect life to return to the way it was before the diagnosis; for many patients, that's not possible. Trying to live up to that expectation can provoke negative feelings of guilt.
You mentioned the financial implications of cancer; can you expand on that?
The financial impact of cancer is very real and can linger. In this case, I would encourage families to investigate every option available to them-for example, visit the Cancer Center's Practical Assistance Center to find out whether they qualify for various financial assistance or disability programs. These programs are designed to help families during these difficult times.
Sometimes people with cancer feel that they may have done something to cause their disease. How do these forms of guilt impact patients?
Cancer is caused by many things, so it's often impossible to know why someone develops the disease. But this may be one area where there are more serious implications of this notion of guilt, particularly among lung cancer patients who smoked. Occasionally, a feeling of self-blame can translate into a sense of fatalism: They may believe they were at fault, so they aren't worthy of treatment. In that sort of situation, counseling can help patients reframe their experience to get them thinking about what they have to look forward to.
Can you talk a little bit more about that of reframing an experience?
No one can tell you how to feel. If you feel guilt, you feel guilt. But a therapist can help patients find ways to alleviate it and work around it. Often, for patients in this situation, focusing on meaningful milestones -- such as living to see a daughter get married or the birth of a grandchild -- can serve as motivation to keep living. It's a matter of helping the patient find the things in life that are more important than that sense of self-blame.