NCCN Opens 18th Annual Conference with Roundtable Discussion of the Cost of Cancer Care and Implications of Uncertainty
ABC News veteran and anchor, Sam Donaldson, led a panel discussion about the rising cost of cancer care in the United States. Panelists included physicians from academic and community settings, as well as Pulitzer Prize-winning journalist, Amanda Bennett.
FORT WASHINGTON, PA—The National Comprehensive Cancer Network® (NCCN®) opened its 18th Annual Conference: Advancing the Standard of Cancer Care™ with a roundtable discussion titled, The Cost of Hope: A Candid Roundtable Discussion. ABC News veteran and anchor, Sam Donaldson, moderated the opening session, as he has for the past seven years, following a keynote address from Amanda Bennett, Pulitzer Prize-winning journalist, Executive Editor, Bloomberg News, and author of The Cost of Hope: A Memoir, who spoke candidly about her late husband, Terence Foley, and his battle with kidney cancer.
Ms. Bennett was joined on the panel by Craig D. Turner, MD, Urologic Consultants, PC; J. Cameron Muir, MD, Executive Vice President, Quality & Access, Capital Caring and Assistant Professor of Oncology, Johns Hopkins Medicine; Ronald M. Bukowski, MD, Bukowski Consulting, LLC; and Keith Flaherty, MD, Massachusetts General Hospital Cancer Center. Most of the panelists were involved directly with Mr. Foley’s care.
Mr. Donaldson opened the discussion with the topic of how patients gather information after their diagnoses, how doctors discuss prognosis with their patients, and the effect that these conversations have on hope. “When you and Terence were first told that Terence had cancer, do you think you had enough information at that point to even consider that he might die?”
Ms. Bennett explained that a lot of her time, as a spouse, was spent researching her late husband’s cancer. Like many others, she explained, Ms. Bennett immersed herself in the internet, gathering information from many sources.
Dr. Turner, the surgeon who removed Terence Foley’s kidney which led to his cancer diagnosis, added that, in the situation of a cancer diagnosis, one must consider the different perspectives. A surgeon’s “successful” procedure may resonate with a patient as a positive prognosis, whether or not that is the case. “Where I pause now when I’m counseling my patients is, ‘until we have evidence to the contrary, consider yourself cured.’”
Turning to Dr. Muir, a hospice and palliative care expert, Mr. Donaldson inquired where, from the palliative care perspective, the line is drawn between optimism and realism.
“Well, it’s always a delicate balancing act, which we often teach and describe as hoping for the best and preparing for the worst,” said Dr. Muir. He explained that, as physicians, oncologists are trained to “know” and that certainty, facts, and data are the grounds on which physicians practice. “To be able to discuss and sit comfortably as a physician in the realm of grey and uncertainty is very difficult and it’s a skill set that needs to be developed and honed,” said Dr. Muir.
On discussing prognoses with patients, Dr. Bukowski, who treated Mr. Foley at the Cleveland Clinic Taussig Cancer Center, said, “There is no one way to do it—it depends on the physician…and on the patient. You have to consider how the patient is considering their illness and what they want to hear.”
“How do you balance realism and hope?” Mr. Donaldson asked Dr. Flaherty, who is the Director of Developmental Therapeutics at the Massachusetts General Hospital Cancer Center and was the last oncologist to treat Mr. Foley.
Dr. Flaherty discussed how population statistics are difficult to explain to patients and that, while such statistics are helpful to doctors, they are binary to patients because, to them, “it either comes back, or it doesn’t come back.” He tells his patients, he explained, that he has the statistics and asks if they prefer the numbers, or a scale of probability.
The conversation turned to the cost of care as Mr. Donaldson asked Ms. Bennett about her experience from a cost perspective.
Ms. Bennett explained she and Mr. Foley had optimal insurance policies during Mr. Foley’s treatment and that out-of-pocket expenses were not a concern. However, she noted, had they been faced with payments of $700-a-day for treatment they knew would most likely be inefficient, they most likely would have chosen a different course of action.
Mr. Donaldson then asked Dr. Turner to elaborate on the subject of cost.
“Cost has become a part of every conversation I have with my patients,” said Dr. Turner. “I’m obligated to think about it and do my best decision-making every day with everything that I do.”
Dr. Muir added, “This is a national concern. The current model of care is unsustainable.” Dr. Muir explained that professionals need to be trained to take the statistics and discuss them in a full range of options with an individual, saying that, with palliative care, it comes down to “how you describe the options and how you discuss the uncertainty.”
“In America, cost is put in the background. It doesn’t matter what the drug costs, it matters what it does,” said Dr. Bukowski. “It matters if it’s efficacious or not.”
Mr. Donaldson then asked the panel to discuss end-of-life decisions, and how physicians attempt to collaborate with families for the best care options.
“Coming together as a team of physicians to support a family is truly a privilege and a blessing,” said Dr. Muir. He explained that physicians must understand what the family’s goals are in order to create and collaborate on a strategic track: “In my opinion, that’s quality comprehensive cancer care.”
The roundtable drew to a close when Mr. Donaldson asked Ms. Bennett, “What’s your advice now when it comes to hope versus realism?”
“In some ways,” she answered, “we need to think a lot harder about the technology of understanding the ‘soft stuff’. There is a way of understanding uncertainty. There is a way of communicating uncertainty. There is a way of balancing out hope and trying, and yet understanding that it might not happen. I think that learning a little bit more about how to do that is very important.”
About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network®(NCCN®), a not-for-profit alliance of 21 of the world’s leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality, high-value cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives.
The NCCN Member Institutions are: City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Memorial Sloan-Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Cancer Institute, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI; UNMC Eppley Cancer Center at The Nebraska Medical Center, Omaha, NE; The University of Texas MD Anderson Cancer Center, Houston, TX; and Vanderbilt-Ingram Cancer Center, Nashville, TN.