My trusty newsreader served up “A ePatient Firestorm Provoked by Journalists” by Dan Dunlop over at The Healthcare Marketer. I was honestly not aware of the fire caused by two journalist rubbing words together since breast cancer is not my beat. Though once I dived into Dunlop’s post it became interesting. Well only from what a graphic designer would call the negative space on the page. The space where there is white not type or art.
If you haven’t been following, Lisa Bonchek Adams has been Twitting (@adamslisa) and blogging about her battle with Stage IV breast cancer. An op ed piece about Adams and her blogging etc. printed in the NY Times and The Guardian has enflamed the ePatient community. (These fire metaphors are getting me hot under the collar.)
One is an op-ed piece written Bill Keller in the NY Times and the other by his wife Emma Keller in the Guardian which has been taken down. Reading the Times piece Keller addresses the other aspect of a terminal illness beyond cure: palliative care. Bill wonders out loud if Adams living her cancer on stage and voyeurism of the fight to live. The debate is about freedom of press, the ability to share the most intimate details of one’s disease, the fight to live, etc. It is about sharing information so others can learn and benefit . I am in absolute agreement with all that and more. And in the Atlantic piece by Megan Garber she captures the feeling of the ePatient, don’t follow Adams if you don’t like it and don’t complain about it either. Cool way cool.
My love affair with say whatever online draws thin with the likes of Jenny McCarthy pushing eCigs and humping the crap about vaccination. Come on, the evidence is clear and both those positions taken by McCarthy are dangerous to others who follow it. What Adams is doing is not dangerous to those with breast cancer. Adams message and life can inspire the patient who wants to live and fight for a cure. But there are a couple of points to consider captured by Dunlop clearly and succinctly:
Adams and her medical team at Memorial Sloan-Kettering have been aggressively treating her cancer; and Adams has been open on social media talking about her journey. Unfortunately, Bill Keller, whose piece appears in the NY Times, seems somehow threatened by her voice, and assumes that her experience and storytelling somehow are an affront to others who choose a less aggressive path (he gives the example of his father-in-law’s death). This is fascinating. Here’s a quote from Bill Keller’s story:
“Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.”
What does Keller want? Should Adams go quietly into the night to avoid raising false hope for other cancer patients? And who is Keller to even suggest how anyone should deal with a terminal illness? I applaud Lisa Adams for telling her story brilliantly. For me, that is enough.
As you know those three who’ve read and followed me my wife died of NSCLC. I wrote about her illness and death. I posted a piece “What if We Gave Ribbons for EOL and HPM?” Donna did not run a marathon or climb K2 she lived her life as she wanted to with in the limits of the disease. Yet I wonder if she would be criticized for not trying for a cure when none was there?
A friend who is very active at Death With Dignity #dwdchat wrote me the following in an email:
Dying is an intensely personal process; what’s best for one person won’t be for another. What’s really confusing to me about this particular debate is how one person’s decisions on how to die somehow diminishes another person’s path to death.
And that is the bottom-line. We know how we want to die and what our beliefs are and most of all how we want to live when faced with death. Fight or flight. That’s personal and important. It is part of our being encoded into our DNA. And any discussion of this; end of life, palliation, cure, etc. helps all of us to shape and formulate our very personal DNA. Yet we know there are many who are not clear on that aspect of life and health and dying. For those not clear or strong enough friends and family may use their opinion to coach and shape how the patient deals with a terminal diagnosis. And in a way they drive the end of life based on their opinions and DNA not the patients. Clearly this is not the case with Adams. She knew what she wants and how to achieve it. Her message resonates with a majority whobelieve in fighting to the end. Yet the other message of palliative care and dying on ones own terms seems to be minimized and obfuscated. Both messages are critical and need to be heard by anyone who needs support for what their DNA on death is telling them. One day I want a ribbon or a race for end of life care.