Thursday, May 2, 2013

Lung Cancer Guidelines With No Mention of Palliative Care?

(Ed. - Welcome Mr. John Hennessy to the Pallimed family.  His background in executive leadership of oncology programs brings a potential outsiders perspective to Pallimed.  Thankfully he is a strong ally and champion for hospice and palliative care as you will see from his first post. Great to have you here John. - Christian) 

Disappointed…frustrated…we’ve all been there.  My most vivid memories are of birthdays at home, when books and socks were unwrapped rather than remote control model airplanes and car keys. It wasn’t my birthday this week, but my daily e-mails usually include a gift or two. This week, it came from the National Comprehensive Cancer Network (NCCN) in the form of a link to the 2013 NCCN Guidelines for Patients for Non-Small Cell Lung Cancer (NSCLC).  At the time of this writing, it appears to be one of the most recently-updated guide books available.

If you haven’t seen the guidelines on the NCCN website, they are pretty amazing.  They look sharp— the graphics are top notch.  The NSCLC guide is exactly 100 pages, and is nothing, if not thorough.  Diagrams of the lungs and lymph nodes are excellent and informative.  The guide covers diagnosis and testing, staging and a broad spectrum of treatment options.

I’ll admit that, initially, I didn’t read it word for word, cover to cover—but I was certainly scanning for key concepts.  In particular, I was looking for how the guide would integrate the wonderful work written in 2010 by Jennifer Temel, M.D. and her team at Massachusetts General Hospital on the integration of early palliative care in metastatic lung cancer. (Pallimed posts here and here)  Now, more than ever, these findings are extremely helpful and informative in patient education. So, I kept looking…and looking.

There were a couple of references to “best supportive care,” but if that phrase is euphemistic jargon in our industry, I wonder how that is interpreted by patients who are working their way through the 100-page guide.

After my second and more thorough read through, I was convinced I hadn’t seen the word “palliative” anywhere. The good news was that I could access an easy search feature, which I thought would confirm that I had not been a careful reader.  However, the bad news was that the search engine said, “There are no results.”


If you didn’t see it the first time, Dr. Temel’s article was a little like a birthday gift…or maybe a birthday gift that showed up a week late.  Atul Gawande’s “Letting Go” had just been published in the New Yorker and had provided a glimpse into the world of palliative care, but it was only an anecdotal view.  And merely moments later, (well, medical literature moments), the New England Journal of Medicine publishes Temel’s peer-reviewed article that reveals early palliative care in non-small cell lung cancer extends and enhances life.  Neither of these articles were a surprise to those of us who advocate for and practice palliative care, but these were wonderful, high-profile stories in the wake of “death panel” rhetoric.

Fast forward to 2013…one must applaud NCCN for migrating from provider-centric roadmaps and reaching out to patients to help them understand a complex disease process.  However, it is hard to understand how a treatment modality that has been shown to make life better and longer for patients with NSCLC, goes virtually unmentioned.  It would seem that if early intervention has a survival advantage, we should start seeing a discussion of palliative care in the early sections of this guidebook.  Educating patients about palliative care, as a complement to other therapies, would encourage conversations that can otherwise be difficult for practitioners to start.

So, I’m planning on creating a little gift of my own, and am sending these thoughts to a colleague at NCCN.  I’m not sure how NCCN develops and promulgates its guidelines, but I know if I don’t say anything, I’m not helping.  I have to believe that in an upcoming version of the guide, chapter six will include a section for palliative care.

ResearchBlogging.orgTemel, J., Greer, J., Muzikansky, A., Gallagher, E., Admane, S., Jackson, V., Dahlin, C., Blinderman, C., Jacobsen, J., Pirl, W., Billings, J., & Lynch, T. (2010). Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer New England Journal of Medicine, 363 (8), 733-742 DOI: 10.1056/NEJMoa1000678 - Open Acess PDF

John Hennessy is Vice President, Operations for Sarah Cannon, the global cancer enterprise of Hospital Corporation of America (HCA). His focus areas at Sarah Cannon are medical oncology, survivorship, and palliative care.  He serves on the Board of Trustees of the Association of Community Cancer Centers (ACCC), and on several committees for the American Society for Clinical Oncology (ASCO), including the Clinical Practice Committee.

Photo Credit: Gifted by JD Hancock

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