NCCN Roundtable Addresses the Many Faces and Challenges of Caregivers

Of the more than 1.3 million cases of cancer diagnosed each year, studies show that at least 50% of those diagnosed will be cared for by someone in their immediate family. However, providing such intense care has a significant impact on the physical, emotional, and financial health of the caregivers themselves. Sam Donaldson, ABC news veteran and cancer survivor, recently moderated a roundtable of notable panelists at the NCCN 16th Annual Conference addressing the various challenges and roles that caregivers and their family members face as their loved ones manage the disease. A video of the roundtable is now available on NCCN.com.

Mr. Donaldson opened the discussion by asking each of the panelists to talk about their initial reactions to learning that someone they loved had cancer.

Bill Cowher, analyst on The NFL Today and former head coach of the Pittsburgh Steelers, described his need to be “the strong one” after learning of his wife Kaye's diagnosis of melanoma, a role that he traditionally filled in his job as football coach and in their relationship. Mr. Cowher said he questioned how he would find the words to tell his wife about the seriousness of her cancer when he was informed of her diagnosis.

Suzanne Daulerio, daughter of the late Patricia Daulerio, a long-time employee of NCCN, talked about going into “research mode,” filling her living room with print-outs of related information she found from various Web sites.

Charlie “Chaz” Ebert recounted making the decision to marry her husband, acclaimed film critic Roger Ebert, after he told her he had a recurrence of his cancer and that he would require additional treatment that eventually left him unable to speak or eat.

Jai Pausch, the mother of 3 children under the age of 5 at the time of her husband Randy's (acclaimed Carnegie Mellon University professor and author of The Last Lecture) diagnosis, discussed her anger at having the life they had planned together taken away from them and the stress of having to provide medical care for her husband while trying to maintain a normal environment for her children.

Stemming from Ms. Pausch's comments, the issues related to how to talk to children about cancer evolved as a major theme of the discussion.

Liz Scott's daughter, Alex Scott – founder of Alex's Lemonade Stand Foundation – was only 9 months old when she was diagnosed with neuroblastoma. Mrs. Scott talked about the challenge of discussing the diagnosis with Alex and her siblings, noting that, “if I didn't know how to deal with this, how could I expect them to understand?”

Jill Ellen Snow, wife of the late Tony Snow, former White House Press Secretary and journalist, expressed gratitude to her husband's oncologist for offering to help tell her children that their father was dying. Mrs. Snow explained that providing the children with honest information became a priority given their father's high-profile occupation; she said that the media often published inaccurate reports of his condition.

Mrs. Pausch described an emotional conversation with her oldest son in which he asked her directly whether his father was dying, and she chose to protect him rather than confirm his suspicions.

Despite years of medical training, caring for someone on a personal level also has an impact on professional caregivers.

Mary Beth Reardon, RN, MS, of H. Lee Moffitt Cancer Center & Research Institute, described caring for a friend and mentor who was diagnosed with cancer as “a turning point”; she said the experience changed how she viewed her daily interaction with patients and their families and how she became more empathetic toward the caregivers.

Samuel M. Silver, MD, PhD, of the University of Michigan Comprehensive Cancer Center, described the uneasy and humbling feeling of becoming a patient himself when he viewed his own x-ray showing he had lymphoma. Dr. Silver credited his task-oriented wife for helping him through his diagnosis and treatment.

Despite their various situations and outcomes, all of the panel members experienced long-term stress, fear, changes in relationships, and exhaustion in the process of trying to balance caring for their loved one, family members, and themselves.

Mrs. Ebert recalled her husband's oncologist advising her to take care of herself, to rest and eat because his care was a “marathon not a sprint.” Priscilla Mack also recalled how she felt “pure terror,” not just fear, when she heard that husband Senator Connie Mack had melanoma.

One of the most difficult issues that confronted each of the caregivers was talking about and dealing with end-of-life decisions and issues. Mrs. Pausch noted that the caregiver is often the one put in the difficult position of having to raise end-of-life issues with the patient once the prognosis becomes negative.

Ms. Daulerio said that her family avoided any discussion of dying with her mother because they thought it would be too sad, but that by the time her mother reached the final phases of her life, she was too sick to participate in critical decisions regarding her care.

All of the panelists agreed that they expected and needed honesty from their treatment team about what was happening, but had varied opinions on the value of being given statistics on the potential effectiveness of late-stage treatment options or predictions on how long a person might live.

Mr. Cowher emphasized that he focused on maintaining quality of life for his wife and their grown children near the end of her illness. He also said that he struggled with feelings of failure in his role as decision-maker.

Mrs. Ebert summarized the panel's conclusions when she urged the audience of oncology specialists to “think about the caregiver. When you are developing guidelines for treating cancer, you have to take into account the human parts, the things that go into healing both the patient and the people who take care of that person, or, if the healing fails, then the issues that are important at that stage of life as well.”

The NCCN 16th Annual Conference Caregiver Roundtable, titled “The Many Faces and Challenges of Caregivers” can be viewed in its entirety or in 8- to 15-minute segments at NCCN.com.