A little over a week ago, there was a bit of an uproar in the cancer community. Bill Keller, an Op-Ed columnist for (and former executive editor of) The New York Times, took a good hard look at the work of Lisa Bonchek Adams. Ms. Adams has blogged and extensively tweeted (165,000 tweets!) about her ongoing battle with breast cancer. Mr. Keller and his wife Emma both wrote articles examining and questioning the manner in which Lisa Adams has publicly handled her worsening condition. They also compared it to the passing of Emma’s father, portrayed as a quiet, private, peaceful end of life.
Two converging points became salient during the course of reading these articles (Emma Keller’s has since been removed) and others that reported the forceful reaction, mostly negative, to the Times piece. First, the manner in which Americans handle premature end-of-life is portrayed as much more clinical and hospital-antiseptic than our British counterparts. Put aside for a minute Mr. Keller’s absurdly small sample size and mistaken assumptions that all cancer patients live out their final days kicking and screaming in the oncology ward for a miracle treatment to lengthen life. Does our culture spend inordinate resources extending life by an indeterminate length, especially if those days are mostly spent incapacitated or otherwise without contribution to family and society? You know what – hold that thought for a future blog.
More relevant for many of us is the manner in which illness is handled publicly – serious, chronic, and terminal included. My personal stance on this may seem pretty obvious, but it is not as simple as posting blog entries or Facebook status updates. There are real mental and emotional barriers to putting yourself “out there” that even the most open of us face — not to mention how to handle the numerous modes of communication available today.
Exposing a medical condition isn’t about a blog on philly.com or a following an account on Twitter. It oftentimes means choosing between tightly controlling information and those who have access to it, or posting sensitive health information without ways to keep it from being disseminated. It is medical gossip for the 21st century, complete with forums to view and comment. Not every person has the mindset to expose him or herself to public scrutiny, especially when the storyline involves literal life or death consequences.