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

2014 Medicine X: Communicating the Experience of Illness in the Digital Age

Time on the Internet can often be measured by the millisecond. We bemoan the shallowness,brevity and sensationalism of topics that seek to capture our momentary attention on our news feeds. Yet in the early part of 2014, a controversy hit the Internet with the intensity of a meteor and then instead of rapidly burning out, gained in intensity and continued discussion. The controversy became known on the Twittersphere as #Kellergate and revolved around separate columns written by former New York Times editor, Bill Keller and his wife, Guardian columnist, Emma Keller opining on blogger Lisa Bonchek Adams' frequent use of social media as a platform for chronicling and sharing her experience of living with progressive, incurable cancer. Topics of public disclosure of illness, ethics, dignity, TMI (too much information), choices surrounding treatment and death and dying were thrown into the open forum of the Internet. Without any precedent for such public sharing in real time, dialogue became divisive and heated. What appeared to be missing from the discussion was the impact of social media tools and online communities on the large population of those living with chronic illness. Attempting to add some insight to the phenomenon of illness blogging, I wrote a piece in early 2014 for WBUR's Cognoscenti site: Memo to Bill Keller: This is Why Patients Blog About Illness

Now more than half a year later, the discussion has stepped away from the specifics of the Keller/Adams controversy and has entered into a broader conversation on the issues of disclosure, community, isolation and connection. The international conference, Medicine X, held annually at Stanford University, has deemed this an important topic for the upcoming 2014 conference and has invited me and several colleagues to present a panel discussion entitled: Communicating the Experience of Illness in the Digital Age: Reaching Beyond the Keller/Adams Controversy.  I am honored to be the moderator of this panel of amazing thoughtleaders, Susannah Fox, Meredith Gould, and Colleen Young, all pioneers in the fields of peer-to peer-health, online communities, community management and the evolution of communicating the  experience of illness in the digital space. As a panel we will attempt to examine and identify the key aspects of the larger phenomenon of communicating the experience of illness in the digital age that we hope will help inform the continued evolution of online communities.

I would welcome comments and discussion in the comment section of this blog -- more voices on this subject are needed as we prepare for the Medicine X conference panel. I hope to see many of you in Palo Alto, September 5-7. For those of you who can't attend, I will post live-streaming and Tweetchat information for Medicine X as it becomes available.

Pam Talks Pain

What a title...did it capture your attention?  I had a great time guest hosting with Tufts Pain Research, Education and Policy Program the weekly WEGO Health Health Activists' Tweetchat on March 13.  I am passionate about bringing more visibility to the invisible epidemic of chronic pain.  It is time we recognized that chronic pain (pain lasting more than 3 months) is not just a symptom but should be thought of as a disease entity that needs complex and multidisciplinary treatment.  Thanks again to the WEGO Health folks who do an amazing job amplifying the voices of health activists and advocates locally and globally.

#HAchat Recap: The Invisible Epidemic: Pam Ressler Talks Pain

by Caitlin

130 million people in the US are chronically ill, and 116 million of these people suffer from chronic pain.  With so many suffering, it’s amazing that chronic pain is something rarely talked about and a constant source of tension between those who suffer from pain and their healthcare providers (HCP).  Why don’t people talk about chronic pain? Why is there stigma against those who suffer from chronic pain? As HealClick pointed out, no one has ever questioned the “stomach ache”, so how can HCPs doubt “unbearable pain”?

This week’s chat was hosted by Pam Ressler (pamressler), a current faculty member of the Pain Research, Education, and Policy (PREP) program at Tufts University, registered nurse, social media enthusiast and pain research advocate.  Wendy Williams (TuftsPREPpain), Associate director of the Tufts Prep program also joined in on the conversation.

Perceptions of Pain
pamressler: Huge problem…pain is invisible! It’s not something you can put under a microscope or cover with a bandage, and this is the biggest reason it’s so hard for physicians and HCPs to understand, it’s something that they can’t exactly put their finger on.  Many doctors seem to be under the impression that chronically ill patients “just want to swim in opiates” as TiffanyAndLupus put it, and they label these chronically ill patients as drug-seeking.  They are also hesitant to treat pain because they don’t want to get labeled as “dealers” of pain medication.  Then it’s the fact that there are different types of pain.  julianna12369: “There seems to be a breakdown when it comes to visits to hcp’s for chronic vs acute pain.” Co-morbidities can also stay a doctor’s hand when writing a prescription:  julianna12369: “There is a lot of stigma. As soon as someone sees I am #bipolar and I have #lupus, that’s it for taking much of my pain seriously.”  In this way, suffering from multiple conditions may undermine a patient’s “pain credibility” with their doctor. 

ArthritisAshley #HAchat I have anxiety & rheum arthritis, chiari, celiac, palindromic rheumatism, DIL, POTS, thyroid issues but anxiety is all many docs see -#HAchat
hockeygrl1:  i wish my dr would listen more. She attributes pain to #frbro & gives me antidepressants, sometimes i need more #hachat
kimmieCollas @hockeygrl1 & some of us can’t TAKE antidepressants (manic episodes & other nasty effects #HAchat

And even if you find a doctor who understands your pain, ER trips can lead to accusations of drug seeking behavior.  In the end pain has a bad reputation amongst both patients and caregivers. For patients, it’s a life altering inconvenience.  For HCPs:  ArthritisAshley:  “I hate that chronic pain disorders are associated with hypochondrism, pill-popping etc.”
But it’s not just about the pain. It’s about how others perceive your pain and how you perceive yourself.  It’s one thing to not have your doctor believe in the severity of your pain, but what if members of your own family were in doubt? hockeygrl1 “I agree on the family worried about pain medications. My daughter mentioned that she thought I refilled mine too soon. not true”.  What about all of the things that result from chronic pain, such as fatigue or depression? How do you treat these symptoms without throwing anti-depressants at the problem? Susanmees: “docs need to ask what else is happening in someones life, not just physical pain, mental &stress issues too”.

Thinking outside the doctor’s office
The chromatically ill and those suffering from chronic pain seem to be some of the biggest advocates of alternative therapies, even when doctors are not: kimmieCollas “most of the MDs I’ve talked to abt integrative therapies say there’s no proof – I say if it helps, I don’t care if there’s proof .”  Here are some therapies our Health Activists have tried:

@pamressler: We need to expand our tool box for chronic pain…meditation, yoga, tai chi all can play a role #hachat
@FabulousandSick: I totally agree. We also need to add diet changes to our tool box.. #HAchat
TiffanyAndLupus T1: This month I have been learning meditation and taking a chronic pain yoga class. BOTH are helping to relieve my pain! #HAchat -
bitogoth Finally started meeting with a therapist to address anxiety/stress aggravating chronic pain, and nice versa #HAchat
PainCHAS massage therapy is smart conservative solution. also should not forget about psychology
bitogoth Heat, hydro and electrotherapy all help for me, but not always accessible (hydro) #HAchat -

Writing your own pain scale
Just as different therapies work for different people, pain is different for everyone.  We often talk about how each patient is unique and that no one deals with their condition in the same way, reacts to medication the same way, or has the same needs in terms of their treatment or care. The same goes for pain, which is another reason pain is so hard for doctors to treat.  julianna12369 “I would like pain scale thrown out. I want my hcp to know that years in pain make my 5 diff then that 5″.  But how is a doctor supposed to treat that?   How does he or she know that your 5 is worse than someone else’s?  ArthritisAshley “My pain & symptoms are always in flux. I could be fine one minute & immobilized the next”.
bitogoth suggested defining your own pain scale:  “I wrote my own scale for my doc- very specific. Has helped much in communicating pain”.  It will lead to a better conversation with your doctor about your pain, and also help your doctor decide on the best course of treatment.  You should also define your expectations with your doctor. While it’s important to strive for a pain-free life, it seems that most of our Health Activists found this to be unrealistic:  julianna12369 “I don’t expect to have ZERO pain, I think that’s unrealistic. Healthy people have SOME pain. Just manage pain.”  As always, communicate your needs to your doctor and come up with a plan to address them. Like patients in any other condition, the chronically ill and those suffering from pain are just expecting for their doctor to listen and respect them: julianna12369: “so my expectation of my HCP is to listen, believe, communicate, and try. And for me as a patient, the same.” TiffanyAndLupus “I would like my Drs to know I am coming to them for help; because I don’t have answers.”
Finally two pieces of wisdom to carry you through the week.  Last week we heard from an HCP that doctors hear empowered groups more than empowered individuals, so don’t forget: TiffanyAndLupus Alone we are one; together we are strong. @HealClick: 130 million total chronically ill… The epidemic no one knows about.
And though we doubt you need a reminder of why it’s important to talk to your doctor about your pain: ArthritisAshley – “I had a doctor tell me it was “all in my head.” It was but NOT how he meant it – I had Chiari malformation & needed brain surgery.”

Do you have other alternative ways to deal with pain?  Additional tips for communicating with your HCP about pain?  Feel free to send additional ideas to editorial@wegohealth.com!
Make sure to join us next week for more on Health Activism and Healthcare Professionals!

Medicine in the Age of Twitter

Dr. Pauline Chen poses an interesting question in her NY Times article, Medicine in the Age of Twitter: Does online social media help or hinder patient-provider communication? If you haven't heard about Twitter, it is a new social media platform that allows users to communicate via short, 140 characters or less, "tweets" to other users. I am intrigued about the possibilities of connection, but am wary of the lack of human touch. What do you think?