Great #TEDMED summary from @epatientDave on owning death: Sekou/Steve perform, Alexandra Drane on Engage With Grace

TEDMED on owning death: Sekou and Steve perform, Alexandra Drane on Engage With Grace

by e-Patient Dave on October 28, 2010

We talk a lot here about taking, owning, or reclaiming responsibility for our health and its care. If we ever update the e-patient white paper I want to include an area where we???re sometimes robbed of control at the most intimate time: death, and the months and years before.

Yesterday I posted about the Tuesday night opening by lung transplant recipient Charity Tillemann-Dick, who inspired us to a standing ovation. Wednesday opened with an even stronger response to a new performance by poet/performance artist Sekou and his partner Steve. I can best describe it as a powerful jazz poetry duet about our final years and the onset of death. Here???s a snapshot from Martha Stewart???s Tweetstream. (Yeah, that Martha.)

Trying to describe this experience is like trying to describe ???. I don???t know, surfing? Swimming? A Rolling Stones song? The words are a feeble proxy ??? that???s why the TED and TEDMED videos are so great. They???ll be out in a few months. For now here???s my best shot. (Commenters who were there, help.)

They stood side by side. One at a time, then together, they launched a ???tic, toc, tic, toc??? that conveyed the unstoppable march of time as life goes by. Time after time they brought us to the end of life, then pulled back ??? to birth, to other stages, then back to the end, to ???is this it???? and confronting the medicalizing of death, and wanting some sense of control. At least twice I thought it was over but they pulled back for another cycle, deeper and broader.

I???ve never seen a more emotionally compelling performance, especially in just 20 minutes. They swept up the audience, evoking feelings of being dragged toward death, but pulling back, wanting to own and direct the experience. They tied death to birth ??? both are natural (???they take care of themselves.??? They made clear that our turf as empowered humans is to be responsible for what happens between ??? and not to let control be taken away.

At the end audience response was even stronger than Tuesday???s ovation: everyone leaped up at once. It was visceral; some cheered.

I was left with a clear, strong feeling that not only is my life mine, my death is too. I recalled Paul Grundy???s story here, two years this week, of his father???s overtreatment ??? a pacemaker inserted near the end that he???d specifically said he didn???t want. I thought of my own father, who was denied the death at home he???d wanted, because his long term care facility gave us half truths about hospice.

This is wrong. This steals our power from us, at the very end of life, sometimes for paternalistic reasons but too often for profit.

Bravo to Sekou and Steve. And they set the stage for another talk Thursday, by Alexandra Drane of Eliza Corp.

Alex shared the Engage With Grace story. Her sister-in-law ???Za??? died at 32, and through forceful family action was allowed to go home to die, where her young daughter was able to cuddle with her. Today the daughter, age 9, loves to be told again how she was the last thing her mother saw. She implored us to ???have the talk??? with family and friends, the five questions about our end of life wishes, and to have it now, long before we think we???ll need it.
_________

This is my first TEDMED, and it???s different from other events this fall. It seems that TEDMED selects speakers who will amaze and compel. Tuesday night Charity did that, with how she defied death; Wednesday morning Sekou and Steve defined our right to own our death; this morning Alex Drane brought it home with a story of a death at an age not much more than Charity???s.

A lot is going on in healthcare, and a lot of people are drawn to different aspects. For me, nothing inspires more than people knowing themselves and being free to express it: ???This is who I am, and this is how I want my life to go.??? I didn???t expect this at TEDMED, but I???m sure looking forward to the videos.

Comment

Comment
Print This Post

Print
Email This Post

 Email This Post

Share and Enjoy:
  • Digg

  • del.icio.us

  • Facebook

  • Reddit

  • StumbleUpon

  • Yahoo! Buzz

  • Google Bookmarks

  • SphereIt

Comments

One Response to ???TEDMED on owning death: Sekou and Steve perform, Alexandra Drane on Engage With Grace???

  1. Annie Stith says:

    Hey, Dave!

    Wow. That sounds SO powerful.

    Having control is precisely why I have my ???end of life??? legal documents set up the way I do.

    I have seen, too many times, how emotion overtakes a designated Power of Attorney and they make decisions that are against the stated wishes of the patient. My almost-father-in-law just had this happen a year ago. With half a lung taken by cancer years before and a bad heart, pneumonia was particularly rough for him. After going on and off a ventilator three times, he???d had enough. He told the doc he wanted a DNR order, specifically saying he didn???t want to go on the ventilator again. He also told Mom and my ex, named as Co-Powers of Attorney.

    When it came down to it at his next crisis, tho, they couldn???t let go and had him put back on the ventilator. He was SO pissed when he came to! His last days were spent angry and rebellious, pulling off everything he could get his hands on (feeding tube, IV, cardiac leads???) until they had to strap him down.

    My BFF went thru the same thing with his wife about five years ago, giving in to the emotional begging by her relatives and making decisions against her wishes.

    I have no Power of Attorney. In my Health Care Directive, I designate that two physicians must agree that there is no treatment that will be ???life saving??? as opposed to ???life supporting??? or ???life extending.??? One of the docs making the decision MUST be my PCP.

    Then there are four pages of an Attachment, where I specifically answer ???yes or no??? questions about specific situations that help the docs understand what I consider ???life saving, life extending and life supporting.???

    I couldn???t do this without the excellent relationship with my PCP. He???s been partnering with me about my care for years now. I made that clear on my first visit with him, and if he hadn???t agreed I would have gone elsewhere. I???d just been thru a fiasco where my (then) PCP overprescribed both a narcotic painkiller and a muscle relaxer for nearly a year, and I was addicted to both to the point my brain was CREATING PAIN so I???d take the meds all the time instead of PRN. I didn???t find out until I was going to get an epiural and the doc at the hospital caught it. Not my PCP, not my pharmacist, not the neurosurgeon who recommended the epidural.

    At any rate, I???ve been an e-patient ever since. And I will continue to be, even at death.

    Annie

    (DISCLAIMER: Each state???s laws may be different regarding ???end of life??? documents. It???s best to consult with an attorney about your state???s laws.)

 

 

Similar Posts

@epatientdave does a great job of summarizing an amazing TEDMED on the e-patients.net blog.

HealthCampDC – when two worlds come together #hcdc10

As I prepare for a week that begins with presenting on Health Plan Innovation at the World Health Care Congress summit in Alexandria, VA and culminates with HealthCampDC on 2010-11-12 I have been looking at how far HealthCamp has come and the fantastic people I have had the good fortune to connect with as a result of HealthCamp. It therefore seems like a good time to look at how these worlds are coming together. To do that I need to give you a little of my history. So come on a little journey with me….

For a number of years I have worked at CareFirst BlueCross BlueShield. I joined CareFirst at the beginning of 2007 and at the time I was deeply involved with Web 2.0 technology and innovation, actively blogging about how these new technologies could transform businesses and industries. 

I quickly saw opportunities to apply Web 2.0 solutions to health care challenges. HealthCamp grew out of the desire to continue the valuable discussions about the junction of Web 2.0 and Health Care. At the time this was the emerging world of Health 2.0. The barcamp concept of un-conferences seemed the natural format to encourage the vibrant and wide ranging conversations around Health Care and Web 2.0.  Hence HealthCamp emerged and first took place at Stevenson University in June 2008. But it was the HealthCampDC event in 2008 that really kick started HealthCamp. 

HealthCampDC in 2008 had a small but very vocal group of participants. Since Twitter has been such an important part of HealthCamp I am going to use their Twitter names here…. The likes of @jensmcabe, @tedeytan, @lostonroute66, @mjchatter, @anitasmarath, @susannahfox @lygeia they created such a vibrant chatter on Twitter that HealthCamp has never looked back. 

I have to give a special shout out to @tedeytan. It is the definition of Health 2.0 that he developed on his blog with his readers that still acts as the inspiration and guide for HealthCamp.

“How can we rebuild health care on a participatory model using social media, open standards, 

open source and the best that the web and mobile internet technologies can offer?” 

HealthCampSFBay took place earlier this month with over 250 people descending on the Kaiser Permanente hosted event at the world renowned Garfield Innovation Center in San Leandro, CA. The Attendees included Todd Park, the Chief Technology Officer at the Department of Health and Human Services gave an amazing key note speech and then led a session looking at the future of the Community Health Data Initiative. You can catch Todd’s wrap up of his session here:

So on Friday November 12th, 2010 HealthCamp comes back to Washington, DC. This time CareFirst BlueCross BlueShield is officially sponsoring and hosting HealthCampDC at their DC Headquarters – 840 First Street, NE, Washington DC. For me this is a case of two worlds converging. CareFirst has been busy for the past couple of years deploying new systems and we are finally seeing the public face of those changes as CareFirst launches HealthyBlue, a product that rewards members for following healthy behaviors and building a relationship with their Doctor. On the Physician side CareFirst has been busy developing Primary Care Medical Home as a platform to reward physicians for taking better care of CareFirst members.

HealthyBlue is a product that can benefit from mobile solutions and social media. I would like to see Health Care visionaries, developers and anyone in the National Capital area passionate about Health Care converge on HealthCampDC and join in a conversation about how we can use social media, open standards and mobile technologies to encourage people to engage in managing their health. I am optimistic that we can have a positive, forward thinking and open discussion. My experience at CareFirst has been that there are a lot of great minds applying themselves to big challenges to deliver better solutions and services to members. CareFirst is also very active in donating to community causes in the area. However, when it comes to Social Media only a few tentative steps have been made. This therefore is an opportunity to share your experiences with using Social Media and encourage further initiatives in this area.

There are going to be some fascinating conversations at HealthCampDC on 2010-11-12. You can join in if you go and register at http://bit.ly/hcdc10site.

Day 1 of TEDMED: Charity Tillemann-Dick, e-patient

Media_httpdesmondyfro_ejnbb

Notes from a post by @epatientdave – a powerful story that shows the value and potential of an engaged, empowered e-patient:
…She (Charity) moved to Baltimore to work with Johns Hopkins physicians, and chose Flolan. It???s not curative ??? it only reduces symptoms ??? and it has serious side effects. Worse, for a performer, it???s a continuous 24/7 infusion, with a 4.5 pound pump. It had to be strapped to her body, even under operatic costumes.
With it, she sang. In the US, Vienna, Israel.
Ultimately, though, she needed a transplant, and got it. It can damage vocal cords, and some patients don???t even survive. Her surgery was rushed ??? no time to bring her mother to town, to perhaps say goodbye. It was not an easy case ??? coma ensued ??? and she described awakening to her mother???s face. She couldn???t talk, couldn???t do anything yet, but she was alive.
When she closed last night with ???I Could Have Danced All Night,??? my eyes flooded with tears and the crowd rose to its feet.
Oh, the joy of being alive ??? and having the life we want.
_______
Charity is an empowered, engaged e-patient. What do you want in your life? Who should decide which options you???re told about, and which you choose?
Writing this, I googled pulmonary hypertension and it took me to the Google Health page, where it says: ???Your doctor will decide which medicine is best for you.???
Well, bite me: like Charity, I will decide which medicine???s best for me, based on our chosen experts??? advice. It???s my life, it???s Charity???s life. Inform us about our options, and work with us to decide. That???s participatory medicine.

Disqus and Google Sites – is it possible?

I have been busy preparing for HealthCampDC on  2010-11-12. To host pages about the event I decided to try out Google Sites (http://bit.ly/hcdc10site). We find Google Docs really useful for creating an online version of the wall at a HealthCamp event so I wanted to test the integration between Google Docs and Google Sites.

One thing I wanted to add was a comment feature to the site. It seems that Google Sites have comments but you have to be a collaborator to be able to post a comment. We wanted something more open than that but still be protected from Spam comments. I have used Disqus on my http://ekive.blogspot.com blog for a number of years. It works quite well. I therefore thought about using Disqus to power a more open Comments feature on the HealthCamp pages. There was one problem. Google Sites disables Javascript embedding. This makes it difficult to incorporate third party widgets.

In setting up the HealthCamp site (http://healthca.mp)I had already attempted to integrate a UserVoice forum. The only downside was having to pre-define a space on the page for the widget. The problem with uservoice is that the at rest widget is a small tab. When clicked it opens a much larger page. I therefore resorted to just using a hyperlink to the Uservoice forum to allow people to post suggestions for HealthCampDC.  

One thing I did learn from reading up about UserVoice and Google Sites is the suggestion to incorporate javascript in to a widget using Google Gadget Editor. The Gadget Editor allows you to produce a custom gadget and host it at Google. One word of warning. On my Mac I found that the Google Gadget Editor didn’t run correctly in Safari or Chrome. I therefore had to use Firefox to edit my gadget.

When looking at the Disqus problem I managed to add Disqus commenting to my Google Sites pages by doing the following.
  1. Goto Disqus and setup your site
  2. Grab the generic Javascript code (Disqus Universal code)
  3. Goto the Google Gadget Editor and open the Hello World! example Gadget. 
  4. Replace the Hello World code (between the CDATA[[ ]] sections) with the code in sections 1 and 2 of the Universal Code from Disqus.
  5. Use Save As to save the Gadget with a different name e.g. Disqus.xml
  6. Click on the file name you used in the top right of the editor. It will open the xml in a separate window or tab in your browser.
  7. Copy the URL of the Gadget from the browser window.
  8. Go to the page on your site where you want to add Comments.
  9. Edit the page and go to the bottom of the page.
  10. Choose Insert…More Gadgets
  11. Click on Add gadget by URL and paste the Gadget URL in to the address box.
  12. Set the height of the gadget to approximately 650 pixels and choose “include scrollbars on gadget when necessary”
  13. Save the configuration
  14. Save your page

This is not perfect but at 650 pixels any dialog boxes used by Disqus appear inside the gadget. With the right configuration this combination of Disqus and Google Sites lets you allow comments from anyone. Visitors can even use their facebook, twitter, Disqus, OpenID or Yahoo accounts to identify themselves when leaving comments.

If Disqus would tweak the layout in their code slightly this is not a bad solution. Some of the prompts for the settings and other menus that appear to the top right hand section of the Disqus layout get cutoff but that is really a minor niggle.