August 19, 2014

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


kathy kastner @kathykastner said...

Hi Pam, looking forward to tweetchat but in advance thot I'd put forward what might seem a curmudgeonly point of view:
Whenever I hear asked: "Do we have control .." or "Who determines..." or even that word, "Ethical" as relates to social media, the hackles on my back go up. [I'm going to be a dog in my next life] To me, anyone who presumes to be able to control, set rules, claim to have best practices, to me flies in the face of the very nature of Social and its use in networked(digital)media. Especially (but not exclusive to) as relates to health issues and including end of life and patients (otherwise known as people). Even assuming there is some 'body' to set rules and parameters and ethics How are they going to be enforced? Who is going to monitor and by what authority? To me, the very fact that topics such as these put forward speak volumes about the power of social media to 'out' issues otherwise considered too sensitive, too private, too controversial. From my experience - as participant and observer/lurker - nastiness, mean spirited-ness, off-topic, rabble rousing is either soon put in its place or (possibly worse!) ignored. Having said all this, I look forward to the chat because the topic of control and its implications can't help but be interesting, and who knows but the (presumably collegial) heat generated will be just the thing to warm me on this chilly Toronto day.
And now, back to my non-curmudgeonly self.

Daniel Ward, Project Manager, ehospice said...

Hi Pam. I am afraid due to time differences I can't make the chat this evening but I thought you might be interested to know that we have published a number of articles on ehospice about the use of social media in hospice and palliative care, in particular one article which looks at whether asking patients about social media use should be part of a holistic palliative care assessment:
Thanks and I hope the tweet chat goes well.

Pam Ressler said...

Thanks so much for your comments, Daniel and Kathy. I look forward to taking a look at the articles you sent, Daniel. I really appreciate your comments, Kathy and am so glad you raised your concerns on the topic. I agree that ideas of censorship, policing etc fly in the face of the organic nature of online communities and are certainly not what I intended in the posing these questions. I do think we are at a tipping point in our use of social media and the benefits and also challenges should be openly discussed, and we do need to consider how ethical principles may play a role in how we engage in health care discussions -- I am thrilled that we will be having a robust discussion with many thoughts shared. Thanks again for commenting

Meredith Gould said...

Kathy -- if that's you being curmudgeonly, then I'm right there with you!

Big agreement with your points plus I'll add that if an online community has truly emerged, then members will handle the trolls/naysayers/disrupters (not in a good way).

Marie Ennis said...

Would love to be able to take part, but global time difference makes it difficult. However I'll be looking forward to catching up via transcript. I am already enjoying the comments on the discussion here!

Pam Ressler said...

Marie, I know the time of the #HPM chat makes it difficult for those of you on the other side of the pond, but I am so grateful that you will take a look at the transcript and join in the discussion. Looking forward to seeing you at MedX!