Discussing Social Media and End of Life

I have been on a wonderful whirlwind tour of listening, sharing, and discussion in online forums this summer in preparation of the upcoming MedicineX panel I will be moderating with my rock-star panelists -- @SusannahFox, @MeredithGould and @Colleen_Young on September 7. (To learn more about the inception of our panel and follow our "flipped classroom" model, please take a look at the Storify that Susannah Fox has compiled)

This week is no exception, as I will be guest hosting the always engaging and robust Tweet Chat #HPM (Hospice and Palliative Medicine). I hope to pose some questions and listen to the #HPM community regarding how social media is being used and perceived at the end of life. This is a complex and multi-layered area, filled with cultural stigma, fear, courage, vulnerability and ethics. Do we afford the same level of discussion and engagement when one shares about end of life as when one shares about other health concerns? What about when family members are posting about their loved ones at end of life (NPR's Scott Simon tweeted about the experience of his mother's death)? What about choices -- is there subtle and not so subtle bullying that occurs when treatment options do not align with other members of the online community?  I don't have answers, but I am open to listening, learning and sharing with others on this topic -- please join in #HPM at 9:00 PM ET/6:00 PM PT on Wednesday, August 20--newcomers welcome!

Here is the topic rundown for the August 20 #HPM chat:

T1 Do we have different standards in the use of social media for those at the end of life than for those who are in active treatment for a disease?

T2 Who determines appropriate use of social media in a situation when a family member is doing the posting on social media/networking sites (Facebook, Blogs, Twitter, etc.) and not the patient?

T3 Are there ethical issues that we need to think about?

CT: Closing thoughts

For background info:
Communicating the Experience of Illness in the Digital Age
Storify by Susannah Fox