Tag Archives: National Comprehensive Cancer Network

When Death is Sought: Preparing the Caregiver

Charlie “Chaz” Ebert, wife of movie critic Roger Ebert, received compassion and understanding from the oncology team responsible for her husband’s care during his excruciating battle with salivary gland cancer. What she didn’t get, she said, was “fair warning” that her ever-optimistic, take-life-by-the-horns partner might decide not only to give up the fight at some point, but that he might want her help in ending it.

Chaz and Roger Ebert. Image via Flickr user mc1968a by Creative Commons License.

Euthanasia “is never discussed openly, but the topic is out there and it’s terrifying,” Mrs. Ebert said during a roundtable discussion titled “The Many Faces and Challenges of Caregivers” led by veteran ABC news journalist Sam Donaldson at the annual conference of the National Comprehensive Cancer Network (NCCN) in Hollywood, Florida last week. With respect to her husband, “here’s someone whose whole life was about speaking and sharing information, and he lost his ability to speak. He was also someone who loved food and eating with his friends and family and he wasn’t going to be able to eat.”

She knew those realities were going to be devastating for him, but she also knew – or thought she knew – that her husband loved life “and that somehow we would find a way through this.”  That certainty was shattered, however, when, after waking up from a procedure that left him partially and temporarily paralyzed, her husband scribbled “kill me” on a piece of paper.  Shaken by the depth of her husband’s pain, “I told him that wasn’t an option.  He was looking at me to give him some direction, so I told him, ‘If you will find the will to live I will find a way to make your life interesting for you.’ ”

He did persevere, and she has made good on her promise, “but I feel like I should have been better prepared to handle the emotional rollercoaster,” she said.

Jai Pausch, wife of the late Randy Pausch, the Carnegie Mellon professor and author of The Last Lecture, which he wrote while terminally ill with pancreatic cancer, shared a similar story in the hope that it might help oncologists understand that shielding caregivers from certain realities, although well meaning, can leave them more vulnerable to the crushing blows when they occur.   “My husband, who had always been very optimistic and very positive, told me that he didn’t want to be a freak show for our children and if he got to the point where he was to be comatose in that slow progression of dying, he wanted me to give him an overdose of morphine to speed the process along.”

Up until that point, “I would have done anything for him. I didn’t know how to respond. I couldn’t go there,” Mrs. Pausch said.  “I later learned that this is something that a lot of patients talk to their caregivers about, that it’s a normal part of the process, but it’s something that nobody tells you.”

–Diana Mahoney (on Twitter @DMPM1)

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Filed under Family Medicine, Health Policy, Hospice and Palliative Care, Hospital and Critical Care Medicine, IMNG, Internal Medicine, Primary care

Quality vs. Quantity: Who’s to Say?

Is quantity of life more valuable than quality of life, and who should be the judge? That seems to be the crux of the dissension between the Food and Drug Administration and the breast cancer guideline panel of the National Comprehensive Cancer Network (NCCN) regarding the use of bevacizumab (Avastin, Genentech) for the treatment of HER2-negative metastatic breast cancer.

In December of last year, the FDA announced that it would be removing the breast cancer indication for the drug, which was initially approved under the agency’s accelerated approval program in 2008 based on promising findings of its use in combination with paclitaxel (Taxol) in the E2100 clinical trial. Following a subsequent review of the trial data and information from additional clinical trials provided by Genentech, the FDA deemed the small increase in progression-free survival in the absence of an overall survival benefit to be outweighed by the risks associated with the drug, and has begun the process of removing the indication.

Although the FDA action would not preclude off-label use of the drug in breast cancer patients, it would effectively prevent it by giving payers a reason not to finance it. As such, Genentech is appealing the decision and appears to have the support of the NCCN, which is retaining bevacizumab in the updated treatment recommendations announced over the weekend at the organization’s annual conference in Hollywood, Florida.

Dr. Robert W. Carlson. Image courtesy of Stanford University.

After multiple “marathon” meetings to discuss the FDA action, the 26-member NCCN breast cancer guideline panel decided unanimously to reaffirm its existing recommendation for bevacizumab in combination with paclitaxel as a therapeutic option for metastatic breast cancer, panel chair Dr. Robert W. Carlson announced at the conference. “The data observed in the [E2100 clinical trial] really had not changed from its approval previously, and we thought, if the data were compelling 2 years ago, why isn’t it compelling enough today?”

A revised footnote accompanies the panel’s recommendation: “Randomized clinical trials in metastatic breast cancer document that the addition of bevacizumab to some first- or second-line chemotherapy agents modestly improves time to progression and response rates but does not improve overall survival. The time-to-progression impact may vary among cytotoxic agents and appears greatest with bevacizumab in combination with weekly paclitaxel.”

Dr. Carlson, of Stanford University (Palo Alto, CA) was not dismissive of the toxicities associated with bevacizumab, but reiterated the panel sentiment that the progression-free survival benefit is a quality of life measure that should not be overlooked. “Progression-free survival is an important end point in the adjuvant setting. If it means the difference between 5 months with the disease under control vs. 5 months of disease progression, there is value in that.”

Dr. Carlson disclosed receiving grant and research support from AstraZeneca Pharmaceuticals LP, Genentech, Inc., Pfizer Inc., and Sanofi-aventis US.

—Diana Mahoney

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