Balancing Hope and Reality: Pearls From the NCCN Conference

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MarkOnly_DottedThe National Comprehensive Cancer Network (NCCN) 18th Annual Conference: Advancing the Standard of Care™ began March 13 and ran through March 17 at the Westin Diplomat in Hollywood, FL—and Connexion Healthcare was there.

Here is the Connexion perspective on an important session:

In the morning of March 14, 2013, the NCCN 18th Annual Conference began with a panel discussion led by Sam Donaldson, ABC News veteran anchor. The panel featured Amanda Bennett, Pulitzer Prize-winning journalist, executive editor at Bloomberg News, and author of The Cost of Hope: A Memoir, her book about her husband, Terence Foley, and his struggle with a rare form of kidney cancer. The remaining panelists were prominent oncologists. Most were directly involved in Mr Foley’s treatment.

Opening the discussion, Mr Donaldson asked about the early dialogues Ms Bennett and her husband had had with clinicians about Terence’s prognosis and the initial cancer diagnosis, and about whether the possibility of death had ever entered into these conversations. Mr Donaldson also asked how these talks with clinicians affected their hopes. Ms Bennett related that with her husband’s diagnosis and the removal of his kidney, her role in life changed to become that of “caregiver,” and as key decision maker and orchestrator of her husband’s care, she immersed herself in the Internet, which she came to rely on for information about his cancer. Dr Craig Turner, who performed Mr Foley’s successful nephrectomy, commented on the paradox of reporting “success” to a patient after surgery: even when the cancer appears to have been completely eradicated surgically, the patient is still faced with the prospect that disease recurrence remains a distinct possibility. Consequently, in situations where he may have expressed stronger optimism in the past, Dr Turner now counsels patients, “Until we have evidence to the contrary, consider yourself cured.”

Speaking from a hospice and palliative care perspective, in which he is expert, panelist Dr J. Cameron Muir, observed that counseling patients with cancer is always a balancing act. He pointed out that because oncologists are trained to “know,” and to use data and hard facts in their clinical practice, the uncertainties of cancer, such as the possibility of recurrence or metastases, make it very difficult to for them to communicate with their patients, who look to them for certainty in a world of gray areas. As he also related, oncologists’ skill sets in dealing with these gray areas “need to be developed and honed.” Another of the expert panelists expressed the opinion that there is no single way to successfully balance optimism and realism when discussing cancer, and that it’s a matter for each individual patient-doctor relationship to work through. The difficulty of talking population statistics to patients was also mentioned, when all that patients want to know is whether or not their own cancer is “comin131580966g back.” Hope, it seems, hangs in the balance of the uncertainty issue, and it is important to consider how such hope should best be managed on both a personal and a professional level.

The uncertainty issue and the cost of hope expressed itself further, Ms Bennett continued, when she and her husband were faced with having to choose between interleukin 2 (IL-2) treatment, with its side effects, or no treatment at all. She and Terence “knew” that the treatment wouldn’t work, but the $735-a-day cost was covered. In this instance, the combination of uncertainty and the fact that the treatment was being paid for swayed their decision to have Terence undergo IL-2 therapy. Would their decision have been different without coverage? “Damn straight it would have been,” Ms Bennett responded to Mr Donaldson; they would have chosen another path.

Dr Turner reviewed how cost is an everyday consideration when dealing with his patients, and that he feels obligated to incorporate it into his therapeutic decisions and discussions with them. It was further reviewed by Dr Muir and Dr Ronald Bukowski how, in the United States, prevailing decisions about drug therapies are based on what a drug does, and not on its cost to the patient and to the healthcare system as a whole, despite the fact that our current model of healthcare is unsustainable. Adding service costs to drugs, Dr Turner continued, has been considered in some settings as a way of informing prescribers about true costs. Dr Muir added that, from the palliative care perspective, it has been demonstrated that having cost discussions with patients facilitates their obtaining the most effective treatment at the right time—which, in turn, means having these cost discussions is the most cost-effective approach. The importance of cost to some patients with cancer was accentuated by Dr Muir, who pointed out that 30% of these patients significantly depleted their life savings and that 25% enter bankruptcy as a result of treatment costs. Ms Bennett observed that many medical costs are negotiable among manufacturers, facilities, and insurers, and that this contributes to a conspiracy of silence against patients who are without the means to penetrate the system.

Finally, asked for advice about balancing hope with the reality of cancer, Ms Bennett said that we have the capacity to face uncertainty, but we need to find better ways of interpreting our technology to help communicate exactly what the uncertainties are.

From the Connexion perspective, a few issues implicit in this discussion could have been pursued further, and may warrant direct address in future conferences. For example, early on Ms Bennett talked about relying on the Internet for information, as if her husband’s oncologists, primary care physicians (PCPs), and allied healthcare professionals could not be depended upon to provide better information. This does not speak well of the oncology care continuum and implies gaps in patient-physician communication that require closing. The high cost of cancer, and the fact that patients are unable to negotiate treatment costs, would prove to be an interesting discussion between patients and insurance, physicians’ group, and government agency representatives. We would also like to hear more about what seem to be interrelationships between hope, palliative care, and caregivers’ sense of changing self.

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