Sam Donaldson Hosts Roundtable on End-of-Life Care for Cancer Patients

The National Comprehensive Cancer Network (NCCN) 15th Annual Meeting in March opened with a roundtable discussion on "Cancer Care at the End of Life: When is Enough Enough?" The discussion panel featured individuals from all sides of the cancer experience, including David S. Ettinger, MD, with the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins; Scott Hamilton, who won an Olympic gold medal for men’s figure skating and is a survivor of testicular cancer for more than a decade; Kayce Freed Jennings, wife of Peter Jennings, who died of lung cancer; Sloan Beth Karver, MD, who runs a palliative care program at H. Lee Moffitt Cancer Center; Deborah Morosini, MD, with Lung Cancer Alliance and AstraZeneca, whose sister Dana Reeve succumbed to lung cancer; Lee N. Newcomer, MD, of UnitedHealthcare; and Jai Pausch, an advocate and the wife of Randy Pausch, who died of pancreatic cancer in 2008.

Former news anchor Sam Donaldson, a survivor of melanoma, chaired the roundtable. He opened the discussion by detailing some of the questions the panel would address: “How do you tell a patient, a patient’s family, that you think it’s the end? How do they react to it? How do you pay for it?”

Before deciding how to tell a patient the end is near, the clinician has to decide when to tell the patient. A general consensus emerged that it was important for the physician to take cues from the patient. “It depends on when the patient comes to you,” Ettinger said. “I will tell you that 90% of patients want to know the truth about what they can anticipate.” Ettinger stressed that supplying statistics is not always helpful because “patients are not statistics” and can do better or worse than the statistics predict.

Hamilton agreed. “So much about this cancer subject is personal. The statistics—hundreds of thousands or millions of people are diagnosed with cancer, but each patient feels like they’re the only one.” Hamilton said in his case, he wanted to know everything.

Morosini suggested that, like other aspects of care for patients with cancer, when and how to have an end of life discussion should be personalized. “It’s really going to differ for all families,” she said. Morosini believes the best approach is to initiate the conversation with the patient at the outset, asking, “How much do you want to know?”

“We owe it to patients to answer two questions: What will happen to me and how can you help me?” said Newcomer. He said physicians do not need to mention death more than once “unless the patient wants to hear that…but we should at least give that to them one time.”

Everyone agreed that physicians must listen to patients, discuss prognosis with them honestly, and help them understand when a treatment is likely to help or when it is more likely to degrade quality of life while providing no real clinical benefit. Jennings said her experience with her husband taught her the discussion “is an art, not a science.” In her view, physicians should be honest but they should also take care not to rob the patient of hope. “What Peter’s doctors never did was take away hope,” she said. “Not stupid hope, I mean, we got it. But we knew there were exceptions to the numbers.” Jennings also said she recognized that she and her husband were fortunate that they did not have the financial pressures many people experience when a loved one develops cancer.

Karver also believes in the need to be truthful with patients and their families. “I really do feel that patients appreciate the honesty with which I speak with them. I listen to them and try to help them move towards a goal that will produce a better quality of life,” she said. She described one patient who was in constant pain and continuing with a relentless series of therapies that were clearly wearing him down. She suggested the patient “take a break” to get his symptoms under control, for his wife’s benefit as well as his own.

Pausch made an important point about the conversations clinicians have with patients on end of life care: many patients and caregivers struggle with the terminology. She said when the physician brought up palliative care after her husband’s pancreatic cancer metastasized to his lungs and brain, “I had to Google what palliative care meant…it took me time to process the words and for my mind to re-engage and then to emotionally accept what this meant.”

Newcomer expressed concern that the roundtable, and the nation at large, seemed to be avoiding the cost issue associated with end of life care. He said he was very concerned that healthcare spending was not sustainable at its current rate and something needed to change in how we answer these questions. “Medicare is going broke, nobody can deny that,” he said. “We as a country need to decide how much is too much…we’re going to have to wrestle with it someday, when the money is gone.” Newcomer noted that other countries, like the United Kingdom, have already set limits on how much a year of life should cost (<£30,000 pounds).

Pausch said there were other areas where costs could be cut, and she described how it took several months before physicians discovered that her husband lacked an enzyme to tolerate 5FU. “It would have been nice to know that before he’d been on that drug for four months,” she said. Pausch recommended taking an “intelligent approach” to cancer care and said we should consider whether more testing is needed before administering treatment.

The panel concurred that there are no easy answers to these questions. Donaldson asked Newcomer how you say no to a patient who wants an experimental bone marrow transplant, for example. Newcomer said that is what the NCCN guidelines and guidelines from other professional oncology societies are for—giving physicians and insurers the tools to explain to patients why a treatment is not advised and why a recommended treatment is better. “Sometimes patients need permission to know that it’s okay not to do everything that you could do,” he said.

While the discussion never answered “When is enough, enough?” regarding end of life care for cancer patients, it did shed light on why this question remains unanswered. Patients are individuals, not just part of a collective of patients with cancer, and most want to take an active role in their care. Perhaps the best clinicians can do is have the conversation—talk to patients and their families honestly and openly and let them know that having fewer minutes, to borrow a phrase from Hamilton, does not mean having to settle for worse ones.