Identify feelings, act on behalf of others to address survivor guilt in cancer

For oncologists and other clinicians who see cancer survivors on a regular basis, the first step toward helping patients with survivor guilt is simply to be aware of it.

“It’s important to be aware of the potential for psychological distress among survivors,” Jeffrey Peppercorn, MD, MPH, associate professor of medicine at Harvard Medical School and director of supportive care and survivorship at Massachusetts General Hospital Cancer Center, said in an interview with Healio. “This is a real phenomenon that some patients experience, and it can be addressed. Patients need to know they aren’t the only ones feeling this way.”

Physicians seeing cancer survivors for brief follow-up visits generally lack the time for a comprehensive evaluation of psychosocial symptoms. However, asking general questions about mental health and giving survivors the opportunity to discuss them is one way to validate their feelings and open the door to potential help.

“My message to my colleagues in medical oncology is simply to screen for emotional distress in survivors,” Peppercorn said. “As a medical oncologist, managing guilt and distress is outside my area of expertise, but we know how important it is to address these issues. What we can do is screen for these issues, discuss them with our patients and then connect them with appropriate resources, such as social workers or counselors.”

The power of advocacy

One impactful approach to helping ease survivor guilt in cancer survivors involves inviting them to do something proactive toward helping those still struggling with the disease.

“I have found in my own research that one of the biggest ways for patients to cope with this is by becoming involved in advocacy work,” Megan Johnson Shen, PhD, psychologist and associate professor in the clinical research division at Fred Hutchinson Cancer Research Center, said in an interview with Healio. “I am working on a paper now around this concept; this idea of giving back to other patients seems to be a real source of coping for many patients, at least those in the lung cancer population.”

Shen said other research she and her colleagues conducted has indicated a correlation between advocacy work and reduced stigma around lung cancer survival.

“A link has been identified between more advocacy work and lower levels of stigma,” she said. “It’s hard to know the directionality of that relationship. Is it that patients who have less stigma are more likely to join advocacy efforts? Or is it that advocacy efforts lead to lower stigma? We don’t know that yet, but it does seem to have a positive effect on survivors.”

Maureen Rigney, LICSW, senior director of support initiatives at GO2 Foundation for Lung Cancer who has collaborated with Shen on a survey study of lung cancer survivors, has also observed the value of helping others in reducing lung cancer survivor guilt.

“Our study in people with lung cancer found that being part of a community provided comfort and support,” Rigney told Healio. “Many respondents felt an obligation to help others diagnosed with the disease through providing direct support, joining in public health advocacy efforts and raising awareness of the facts around lung cancer.”

Rigney said helping survivors manage the underlying feelings of helplessness, loss of control and grief is likely to be beneficial.

“However, the lack of research in survivor guilt in cancer limits our understanding as to the most effective interventions to help those affected,” she said.

Guilt and the illusion of control

Another way to target the underlying feelings of helplessness inherent in survivor guilt may seem contradictory at first glance, but experts said survivors may benefit from loosening their grip on the illusion of control.

“Guilt is one of those emotions that helps us feel like we’re in control,” Kimarie Knowles, LCSW-R, a licensed clinical social worker at Memorial Sloan Kettering Cancer Center, said in an interview with Healio. “Grief can be a much harder emotion to sit with for some people. It’s heavy and sad and can lead to anxiety about one’s own mortality. Whereas with guilt, you can blame yourself. When it’s nobody’s fault, then everything can feel out of control and unfair. It can just feel very random.”

Letting go of the feeling of control that comes with guilt can enable a survivor to truly grieve the loss of friends who have died, as well as to grieve their losses related to their own cancer experience.
benefit from processing their feelings, expressing them and having a space to feel and talk about them,” Knowles said. “For these individuals, simply recognizing what is going on underneath the guilt can be very helpful.”

Each case is different

Knowles emphasized that as much as certain approaches might help certain survivors, effectively addressing survivor guilt is far from a “one-size-fits-all” solution.

“Some survivors benefit from identifying their feelings without judgment and, for these more emotive people, the solution might be to find supportive spaces for them to do that,” she said. “Others might not need to express or process their emotions as much, but they feel that they need to do something. Maybe they benefit from creating foundations, participating in fundraisers and finding ways to honor those they have lost. For some, simply living a healthy lifestyle is a way to lessen guilt. Each individual may need to try various coping strategies to see what is helpful for them.”

Shen said perhaps because research is so sparse on the topic of survivor guilt in cancer patients, she is not aware of any guidelines for clinicians in terms of handling it in their patients.

“I’m not certain that any specific recommendations around this currently exist,” she said. “A lot of times it’s not even assessed, and that would be an important first step. Certainly, if a patient has access to a mental health professional, that might be a good approach. However, just showing it exists, and it exists for a good number of patients, would be the place to start. Then the next step is thinking about ways to intervene and help patients.”

For more information:

Kimarie Knowles, LCSW-R, can be reached at knowlesk@mskcc.org.

Jeffrey Peppercorn, MD, MPH, can be reached at jpeppercorn@mgh.harvard.edu.

Maureen Rigney, LICSW, can be reached at mrigney@go2foundation.org.

Megan Johnson Shen, PhD, can be reached at mshen2@fredhutch.org