NCCN Panel: Straight Talk With Compassion Urged for End-of-Life Cancer Care

Deborah Brauser

March 12, 2010

March 12, 2010 (Hollywood, Florida) — Although telling patients that they have cancer and/or that the end is near is difficult, it should be handled in an informative, compassionate, individualized manner, according to a mainstage roundtable discussion here at the National Comprehensive Cancer Network (NCCN) 15th Annual Conference. The panel consisted of experts, celebrity survivors, family members of prominent people who lost their lives to cancer, and even a representative from one of the largest health insurance companies in the United States.

Mr. Sam Donaldson

"How do you tell a patient that the end is coming? And do they want to know?" asked moderator Sam Donaldson, veteran ABC News journalist, cancer survivor, and chair of the newly established NCCN Foundation Board of Directors.

Dr. David Ettinger

"I would say that about 90% of patients want to know the truth about what to expect, but they aren't statistics and they don't want to just hear statistics," answered David S. Ettinger, MD, professor of oncology at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University School of Medicine in Baltimore, Maryland.

"I would recommend really communicating with patients and their families at their initial diagnosis and then design therapy for that particular individual," Dr. Ettinger added. "Everyone acts differently and every cancer is different, but you want to give them all hope, if possible."

Kayce Freed Jennings, wife of the late news anchor Peter Jennings, said that she appreciated that the doctors never took away their hope until the final days. "While being realistic, we knew there were exceptions. The key was to have those months being hopeful instead of thinking about dying. Even at the end, we didn't give up; we just accepted it."

"I would say that the word 'die' should be used to let a patient know where they stand, but it should be used only once in the conversation, with more compassionate words used after that," noted Lee Newcomer, MD, senior vice president of oncology services at UnitedHealthcare,

Jai Pausch, wife of the late author of The Last Lecture, Randy Pausch, said that she would add "cancer" to the list of frightening words.

It can take a while for patients and families to really process and emotionally accept all the information they're given.

"It was always hard for me to get past the word 'cancer' whenever it was used, and later 'renal failure' and 'palliative care' were the same. I think it's important to be aware that it can take a while for patients and families to really process and emotionally accept all the information they're given."

Mr. Scott Hamilton

In contrast, Scott Hamilton, Olympic gold medalist and 2-time cancer survivor, said that during his experiences, "I wanted to know everything I possibly could, but only if it would take me to a better place. It's such a personal disease and everyone reacts in their own way."

"I chose to fight it with humor," he said with a smile. "I decided that if I was going to go down, then it would be while I was laughing."

"Cookbook" Medicine

Dr. Sloan Beth Karver

Sloan Beth Karver, MD, from the H. Lee Moffitt Cancer Center and Research Institute in Tampa, Florida, said that it's important for clinicians to not practice "cookbook medicine," which she defined as taking the emotion out of medicine. "It's just going by rote and spitting out data and numbers that patients don't really understand. But those of us in palliative care do a lot of 'off-the-cookbook' care. I would just say to take your cues from the patients and their families. We really need to get back to the art of medicine and tailoring approaches to the patient."

We really need to get back to the art of medicine.

However, Dr. Newcomer countered that, as a physician, he doesn't believe that standardized protocols for diseases are bad. "What others would call cookbook medicine, I think can actually be liberating. By using checklists, etc, it frees us up to think about the times when we need to make an exception."

During the panel's discussion on treatments, Dr. Ettinger, who referred to himself as "an oncologic chef," said that instead of just practicing defensive medicine, he is happy that so many drugs are at his disposal for his patients. "But there comes a time when that's no longer appropriate, usually when they're bedridden or when a tumor has taken over. When you're not treating them with curative intent, I think you should treat for quality of life for the longest period of time."

Dr Ettinger noted that it's also important to discuss complementary care and alternative medications along the way, especially since many patients won't want to admit to their doctors that they're trying something new. "We should bring it up, check to see if it's something that can counteract the effectiveness of their chemotherapy, and sometimes even make suggestions." He reported that he's recommended combinations of acupuncture, yoga, meditation, exercise, and a little herbal medicine as possible treatments. "It's a way that patients can take control."

Break Can Be Beneficial

However, sometimes a break from treatment can be the most beneficial option, according to Dr. Karver. "Just by introducing a break, where they can think and get their symptoms under control, relax and not just be in constant motion to receive treatment can be a big help. This can sometimes give a better quality of life as they spend that time with loved ones, instead of focusing on daily visits to the doctor."

When Mr. Donaldson asked what kinds of aggressive care near the end of life make sense and how that can be covered at a certain premium level that people can afford, Dr. Newcomer replied that it's a fact that "all insurance companies tally up what the costs are going to be and the premiums then go up. In the United States, unfortunately, that means many people can no longer afford insurance."

He noted that "the British say if you can't get at least a year of extra life for a price of £30,000, we can't afford it. Is that the right answer for the United States? Probably not. But Medicare is going broke and we have not figured out, as a country, when too much is too much. That's something we'll all have to face when the money runs out, and we're approaching that day."

Dr. Newcomer said that the best way to make decisions on aggressive and experimental care is to look to the experts, such as the NCCN guidelines. "We're not trying to take away patients' hope; but when experts say that something is inappropriate and doesn't work, then let's find something that does."

After the presentation, Mr. Donaldson told Medscape Oncology that he took away "1 big thing" from the panel. "Patients at the end of their lives, as far as medical science is concerned, need to hear something that's honest about their condition. There are various ways to do that and doctors and caregivers need to be sensitive. But honesty is key."

Just help them to live fully until they take their last breath.

Deborah Morosini, MD, pathologist in the Department of Oncology Research and Development at AstraZeneca Pharmaceuticals, and sister of the late Dana Reeve, added that physicians should bring 3 things to their cancer patients: their expertise and skill at the highest level, humor if possible, and caring/love. "Just help them to live fully until they take their last breath."

National Comprehensive Cancer Network (NCCN) 15th Annual Conference. Presented March 11, 2010.

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