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A Hospice Card at HIMSS13

I talk about HIT (Health Information Technology) often.  I am very excited about the potential for HIT to allow patients better access to information so they can make decisions about their health.  I attend a lot of policy meetings on the subject of HIT and the subject of patient safety.  Those conversations are wide-reaching, but one topic that is rarely touched upon is end of life. Like many people in our culture, policy folks often side step this conversation in favor of a safer topic like “disparity.”  We can have in depth discussions about the need for a reduction in hospital readmission, but not address the panic readmit of a hospice patient when the family is ill prepared for the final days.  I can watch a room full of people hash through clause after clause on Meaningful Use regulations and see them barely touch upon transmission of advance directives. So,…

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On Mirrors: The Continuing Conversation on Hospice Cards

I want you to think of how many times a day you look within a mirror.  Every time we enter the restroom we glance within the mirror to double check our appearance. We use it to take those lovely cell phone pictures that create avatars on countless social media sites.   We stride upon the streets of a city and reflected upon endless windowpanes; a dark copy of our face walks beside us marking time.  A conference planner once asked me how could we make the assembly space of a symposium remind every attendee how it feels to be a bedridden patient.  I responded that is easy.  “Cover every hall and bathroom mirror with black paper.” The planer looked at me quizzically and waited for my explanation.  “The very compromised patient is stuck in his or her bed. Most hospital bedside tray tables do not have a mirror, or if they…

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What I learned on the road to the Shorty’s

January 26th was my son Isaac’s 7thbirthday. Our small apartment filled with laughter as we crammed 7 children and 12 adults into our living room.  It was a great day and I always enjoy such moments because they unite every aspect of our lives.  Friends from Isaac’s old pre-school were there, as well elementary school friends, friends from the toy store Child’s Play, my husband Fred’s co-worker from years ago, patient advocates, neighbors and family. During this crazy fun-filled day I got a tweet from LisaFields.  She suggested voting for me in the #activism category of the shorty awards.  (The Shorty Awards are like the Oscars in Social Media.) Now, what Lisa did not know was I was working on a really huge painting for Alex Drane. I was painting my interpretation of the spirit of the Eliza Corporation.  So, for the next 10 days I somewhat ignored her nomination. …

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Hallmark is listening

Today has been an amazing day. The petition for Hallmark to create hospice cards has now grown past 1,500 signatures. Hallmark has responded in two ways.  The Hallmark search engine now recognizes the word  “hospice” and the phrase “end of life.”  It will now send you to a card match that is as close as they could find to address the need. They have also released a statement entitled:  “Viewpoints: Greeting Cards for People in Hospice Care.“ Screen shot below: I wish to applaud these two steps in the right direction, but I want you to look closely at the first card they selected to address this issue; “Cancer is tough, but you are tougher.” This is the last thing a hospice patient with cancer wants to hear.  To often they have been told that this is a fight, cancer is a battle.  What is hospice? Losing?  There are other lovely…

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Partnership With Patients:The Survey

In September of 2012 a number of patient advocates, providers, activists and vender partners gathered in Kansas City for The Partnership With Patients Summit to speak about patient centered care, patient rights and the healthcare landscape. One of the direct requests of that meeting was to create a survey to get a pulse on the deep concerns of patients throughout the nation.  Many leading advocates including PatMastors and myself have been crowd-sourcing these questions in the ensuing 4 months.  We asked the wonderful folks at Traitwise to host and create this survey.  Thank you Michael Simpson, President and CEO of Traitwise for helping us through this process. If you have never used Traitwise.com, you are in for a treat!  If I were to compare a Traitwise survey using the analogy of chocolate, I would say: Survey monkey is to artificial milk chocolate chips in generic packaging as Traitwise is to…