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 percent 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, moderated a roundtable of notable panelists at the National Comprehensive Cancer Network® (NCCN®) 16th Annual Conference, where he addressed the various challenges and roles that caregivers and their family members face as their loved ones deal with the disease.

Panelists of the roundtable included: Bill Cower, analyst on The NFL Today and former head coach of the Pittsburgh Steelers; Suzanne Daulerio, daughter of the late Patricia Daulerio, a long-time employee of NCCN; Charlie “Chaz” Ebert, wife of Roger Ebert; Priscilla Mack, wife of Senator Connie Mack; Jai Pausch, wife of the late Randy Pausch, acclaimed Carnegie Mellon University professor and author of The Last Lecture; Mary Beth Reardon, RN, MS, of H. Lee Moffitt Cancer Center & Research Institute; Liz Scott, mother of the late Alex Scott, founder of Alex’s Lemonade Stand Foundation; Samuel M. Silver, MD, PhD, of the University of Michigan Comprehensive Cancer Center; and Jill Ellen Snow, wife of the late Tony Snow, former journalist and White House Press Secretary.

Mr. Donaldson opened the roundtable discussion by asking each of the panelists to speak about his or her initial reactions to learning that a loved one had cancer.

Common themes discussed by the panelists revolved around feelings of needing to be “the strong one” after learning of a diagnosis, or going into “research mode,” and feeling the need to obtain as much information as possible on a specific disease.

Jai Pausch, the mother of three children under the age of five at the time of her husband Randy’s diagnosis, discussed her anger at having the life the couple 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, issues related to how to talk to children about cancer evolved as a major theme of the discussion.

Liz Scott’s daughter, Alex, was only nine months old when she was diagnosed with neuroblastoma, and consequently lived with the disease her entire life. Her mother talked about the challenge of discussing the diagnosis with Alex, as well as her siblings, noting that, “If I didn’t know how to deal with this, how could I expect them to understand?”

Despite years of medical training, caring for someone on a personal level has an impact on professional caregivers as well. Mary Beth Reardon, RN, MS, of H. Lee Moffitt Cancer Center & Research Institute, described caring for her friend and mentor who was diagnosed with cancer as “a turning point” that changed how she viewed her daily interaction with patients and their families, and led her to be more empathetic toward 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.

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 the patient, their family members, and themselves.

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

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 statistics on the potential effectiveness of late-stage treatment options or predictions on how long a person might live.

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.”