Mastodon Social Media and Compassion – what I learned at Wisdom2.0 ~ Pallimed

Monday, February 28, 2011

Social Media and Compassion – what I learned at Wisdom2.0

Our field of hospice and palliative medicine has been active in Twitter, blogs and other means of social media largely thanks to the vision at leadership of Christian Sinclair.  Despite being a small but growing part of medicine, our voice is one to be reckoned with in Twitter, and – as demonstrated by the successes of our friends at Geripal and the increased readership of Pallimed - also in the medical blogosphere.  We still are relative newcomers to social media, as is much of healthcare. The audience at the AAHPM social media panel discussion challenged the panel about:


  •  managing our relationships and time as we become increasingly connected in this world where we are already feeling bombarded by emails, pagers, cell phones, list-serves;
  • maximizing the potential of social media to share, with clear intention, the message that our field as to offer: about high quality and truly patient/family-centered healthcare that is built on evidence and compassion.

Following up the social media session at the AAHPM meeting in Vancouver, I returned to the west coast for a very different kind of conference: wisdom2.0 at the Computer History Museum, where conversations between Buddhist and Mindfulness leaders and social media executives tackled questions about the tension between on- and off-line relationships, the risk of “persistent inattention” with social media vs. attention and intention of social media, compassion and meaning at work and life.  A quote that epitomized the apparent conflict, initially raised by Jon Kabat Zinn, and repeated by Congressman Ryan, was by Thoreau:

(I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.)

Here are some highlights I thought to bring back to the #hpm world (I leave the mindfulness summary to a great blog Penguinasana’s blog):

Chris Sacca (@sacca) Strategic Advisor for Twitter, whose favorite class in college was “Death, Dying and the Healing Arts” introduced me to 1000memories.org
Meng Tan (@chademeng) has the coolest job title – The Jolly Good Fellow - and job description at Google – to enhance joy and create world peace.  He spoke about how teaching engineers a 2 minute exercise in emotional intelligence or mindfulness, otherwise described as (find description) can enhance compassion.
Pat Christen and Richard Tate of www.hopelab.org (@hopelab) opened my eyes to the possibility of merging play, evidence-based, and the enhancement of self-efficacy in cancer care through online gaming.  Their game “Re-Mission” is now free in English, Spanish and French for children, teens and young adults (and those of us who are young-at-heart) around the world.  – I will definitely start using this with many of my patients.
Lori Deschene (@tinybuddha) of www.TinyBuddha.com – spoke of how she built her website that sends out daily quotes, written not by the website authors, but rather people from all walks of life who write in about compassion, meaning&purpose, … I wondered about exploring this site as yet another means for people to share their legacy and stories of resilience.
Congressman Tim Ryan (@tryan, @CongressmanRyan) shared his personal venture into mindfulness, how the practice helps him contend with the conflicts and disappointments as well as the perseverance of political life – as it helps him to hold fast to his priorities and the values of his constituents: including healthcare reform, education reform, and mindfulness.
Marianne Manilow of Engage Network spoke quoted a conversation between Maddow and Engel about the peaceful revolutionary protests in Egypt responding to the increasingly fear-inducing approaches by the government.  Their strategy? “I think they win by information […] They have to counter the story.  They have to tell people how it happened, how it really started, who is fighting.”  The protestors in Egypt heard about the Wisconsin rallies and through Twitter, bought pizza for them at the local joint in Madison.  They used twitter.  We use twitter.  We need to keep telling our story as well – peacefully revolt against the fallacies of the death panels.  Perhaps we’ll also get free pizza out of it.
Sean Corn (@jerseycorn1) spoke of how she moved from being a political activist (women’s health movement) to her work with yoga, and tending to child sex slaves in South East Asia.  She once tried to fix situations, fight and right the wrong. – Yoga taught her how to lean into suffering and stay with it, rather than withdrawing of fighting back.  Would this be a strategy to teach medical students and residents how to “stay” in the conflict of a family meeting, how to cope with moral distress?  She now shares her story through an online and live community called “Off the Mat Into the World.”
During lunch, I met Vanessa Callison-Burch of www.hospicejourneys.org - who developed a site for hospice patients and their families.  Vanessa has been working on websites for multiple corporations, but always had her heart in hospice.  As a teenager, she asked her brother to drive her to the local hospice where she volunteered.  Her appreciation for hospice work and financial constraints  were the inspiration for the website.  Helps patients and hospices alike!  

There were many questions I wanted to ask.  Sunday was the ‘unconference’ where small groups tackled these more personal questions.  Alas, I had to fly home to the East Coast.  So I post a few here:
  • To Congressman Ryan: what advice can you give us in the hospice and palliative medicine world to combat the unfounded fear of “death panels”?  How can we as physicians, nurses, social workers, chaplains, hospice volunteers – newly entering into the world of policy – learn to find the resilience and perseverance  to “keep at it” in our mission to improve the care of everyone facing serious illness and suffering?
  • To Chris Sacca, Michelle Gale at Twitter – thank you.  We might not yet have created a rising as in Egypt, but your company has helped our revolution aimed to alleviate suffering and assure healthcare tailored to the wishes, hopes, and circumstances of every patient facing serious illness.  @ctsinclair is our twitter “celebrity” who I personally hope gets some sort of a prize from Twitter for his work that (in my humble opinion) exemplifies what twitter can offer: integrity, quality, inclusiveness and revolution – all 140 characters at a time.
  • To Meng Tan – the Jolly Good Fellow – and indeed you are the happiest person I have ever met: How can we in healthcare capture and replicate the wisdom and tact you employ in bringing joy and compassion into the lives of engineers (arguably as tough a group to crack as physicians when it comes to anything potentially seen as “touchy-feely”)?  Can you come to UMass and give Grand Rounds?  (In case you wondered, Meng: Coming to UMass won’t help you make $1Billion, but it will add joy and perhaps even help take a little step towards world peace.)
We have scratched the service of what we in palliative care can do with this new technology called social media.  I think our field can model what it means to use it with integrity, intention, in order to alleviate suffering and bring compassion more deeply into this world, while not forgetting how to still live fully in it.

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