Lisa Adams is a stunningly articulate blogger and mother of three from New England who has suddenly found herself as the Rorschsach test for two prominent journalists who should have known better. The husband and wife team, Emma and Bill Keller, writing for the Guardian and The New York Times respectively, in the end tell us more about their own fears and experiences with cancer than they do about Lisa and her current difficult treatment for metastatic breast cancer. She has currently been hospitalizaled at New York's Memorial Sloan Kettering Cancer Center (MSKCC) for almost two weeks now.
The two pieces of writing are disrespectful, inaccurate, and to return a word grenade lobbed by Emma Keller in her Guardian piece, "unethical." Somehow both writers managed to conclude that Lisa is dying (metastatic and terminal are not synonyms), a huge assumption that isn't theirs to declare. Most bloggers I follow, including Lisa Adams, pay more attention to accuracy than these journalists did. Keller, former executive editor of The New York Times, originally misstated the number of children Lisa has. Emma's piece has been removed from the Guardian "pending investigation."
There are many levels on which their "blame the patient" posts are so wrong but I'll stick with two: the gigantic misunderstandings surrounding metastatic breast cancer and a withering lack of savvy about social media and its role in fostering healthy epatient communities.
Somehow, both writers have found the whole idea of patients writing about their experience, and how @adamslisa in particular does so, strangely offensive. Cue the Kellers with a big welcome sign to the 21st century! Cue the Kellers: no one is forcing you to read anyone's tweets! Cue the Kellers: ever since blogging platforms evolved we've heard from men and women about their disease experience and exchanging that knowledge with others. Cue the Kellers: Peer to Peer Healthcare published in 2011 by Pew Internet, a project of the Pew Research Foundation.
For many of us, social media has been the only vehicle in which something approaching truth can be found about living with cancer, and I mean actually living with it, not understanding what cancer is or a definition of chemotherapy. We want hints on helping a phlebotomist find the sweet spot and ten ways of stopping nausea without Zofran. We want to find out more about genomic analysis and in when it's really helpful. No breast cancer patient is going to find these kind of essential details about treatment from the web sites of breast cancer organizations. We find this info from other patients. The organizations may have been founded with the best intention to end disease but each is ultimately vested in its own survival. Patient communities, on the other hand, and patients within social media, exist to help educate and help each other. Patients share freely. It is interactive, dynamic, and powerful, not a one-way street like a newspaper.
The understated nastiness of Bill Keller's "Heroic Measures" starts early. He refers to Lisa as " ... a research subject and proselytizer for the institution" (MSKCC). The subliminal shift to "research subject" shows where his perspective hovers about cancer. He constantly uses military language and metaphor, which isn't part of Lisa's style book. Bill Keller's perception of cancer is limited, naive and just plain stupid. Women with metastatic breast cancer or anyone with metastatic cancer period can endure difficult periods of illness and pop back to tell us about it next month. Cancer treatment, even today with many advances, is grueling. Earlier today I corresponded with a woman who has been in hospice three times. She isn't even 60. Yet Keller's point of view is based on this, "In October 2012 I wrote about my father-in-law's death from cancer in a British hospital. There, more routinely than in the Unites States,* patients are offered the option of being unplugged from everything except pain killer sand allowed to slip peacefully from life." If that's not enough, since Keller has already misread what Lisa has written about the palliative care she's receiving, "His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America."
Wow. He writes on from there for about two more pages. That basis is where Bill Keller's understanding of Lisa's situation stopped, if he ever had any understanding of her situation to begin with. He extrapolates the experience of one (elderly? it looks like Keller himself is middle aged) family member with cancer to everyone with cancer and especially to that woman whose tweets annoy him. It is a failure on an unforgivable scale.
Cue the Kellers: next time you want to write about cancer, take a look at your own stories. Better, yet, just talk between yourselves.
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*Thousands of patients in the United States are offered palliative care on a daily basis. The UK doesn't hold a patent on this. There is a weekly tweet chat on Twitter every Wednesday evening on hospice and palliative care under the #hpm hashtag at 8 pm CT.