The first link in this post was wrong. Fixed. Thanks, astute reader!
For ages I’ve thought that when I write something elsewhere I should at least notify my subscribers here. (Plus, ahem, it may help my forgetful self remember WHERE I wrote about something…)
On my Forbes.com blog, This 15 Year Old Absolutely Nails What ‘Patient Centered’ Is – And Isn’t is about a two minute video by a young patient, recorded ad hoc Wednesday morning by her mom, Amy Gleason, a member of the Society for Participatory Medicine. The discussion on Twitter has gone nuts, there are more than 15,000 views on the blog post so far, and 2½ days later it’s still bouncing around in the top 25 Most Popular list for all of Forbes.com.(!) Check it out.- Also on e-patients.net, today: A neurosurgeon confronts his mortality: lessons in statistics and living while you can is about apoignant essay in the NY Times Sunday Review by a neurosurgeon who discovered at 36 that he had metastatic lung cancer, and his quest to know the odds and then deal with not knowing. Very well written.
The latter hits home because it was this week in 2007 that a biopsy confirmed my kidney cancer diagnosis, with really bad odds. My favorite lines in the surgeon’s essay:
- We all want certainty
- There is no certainty.
- “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”
- “five-year survival curves are at least five years out of date.” This line is brilliant; every patient who googles survival figures MUST hear this.
- Ultimately, from Samuel Beckett: “I can’t go on. I’ll go on.”
The Lisa Adams story: Finally, two weeks ago you may have seen an extraordinary flood of publicity about a very, very strange journalistic episode, in which a husband-wife pair of journalists wrote two bizarre posts attacking cancer patient @AdamsLisa for tweeting her life so much. It started with the wife posting on The Guardian a very personal attack, using private messages when she hadn’t even told the patient she was working on a story; she wrote (bizarrely) that she couldn’t stop her voyeuristic urge to read – then attacked her. Then that writer’s husband – a former executive editor of the New York Times – posted a nasty op-ed in the Times. Aside from the ethical concerns (The Guardian deleted the first article), it was strange because neither seems to understand how Twitter is used, the husband didn’t even read Lisa’s Twitter profile (he got wrong how many kids she has) and both talked about her “battling” cancer when Adams specifically disavows that approach (as I did). My post is Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa). To fully understand the story as it unfolded you need to read through the comments, which include links to several excellent analyses by other bloggers. Some point to the first writer’s own cancer case some years ago, which may carry unresolved terrors. Who knows – in any case it’s a strange episode that gives much cause for thought.
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