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Wednesday, February 27, 2013

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, I am bringing a large hospice card to HIMSS13.

HIMSS 2013 Annual Conference andExhibition is March 3-7, 2013 at Ernest N. Morial Convention Center, New Orleans. The HIMSS (Healthcare Information and Management System Society) conference focuses on Health information Technology and Informatics.  The conference is the largest in the field of HIT and 40,000 attendees are expected. 

I will be attending and painting on site on March 5th. I will be in a special session:


“PatientExperience through HIT Forum” location: Room 252

Is e-engaging with your patients worth the effort? This one-day forum features three sessions dedicated to the value of enhancing the patient experience.

Making Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives: Case Studies in Patient Engagement

March 5, 2013 
9:45 AM - 10:45 AM


The Business Case for Implementing a Patient-Centered Communication Strategies
1:00 PM - 2:00 PM



Building Patient 2.0: Engaging People in Health through Consumer-Facing Devices and Tools
2:15 PM - 3:15 PM

I am really excited to paint these sessions as I know several of these speakers and they have amazing things to say about the intersection of patients and health information technology.  I am happy that Meaningful Use does require that 50% of the time hospitals/doctors find out whether a patient has an advance directive, but I wish it were for 18 and older not just 65 and older.

Many folks at this event will be talking about the power of patient reported data and its importance in a vibrant electronic health record.  But I bet most of those folks will be thinking about data submissions as information from scales and blood pressure cuffs with wifi rather than wondering if their local HIE (health information exchange) can connect with a personal account on MyDirectives.

If you come to the session please sign the hospice card.  I plan to send it to Hallmark via a few of my Kansas City friends as an example of our support of an End-depth discussion on policies that affect us all.  

If you do not make to the Patient Experience through HIT Forum, there will be a post session tweet-up on Patient Engagement at 3:30 at the HIMSS Social Media Center.  I hope to see you there.

Wednesday, February 20, 2013

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 do it is often broken.  So you spend a lot of time alone without even the comforting gaze of your own eyes.”

I remembered this conversation in relation to a comment the Hallmark spokeswoman Linda Odell gave to Kansas City reporter Elana Gordon in her article "Addressing Death and Dying…Through a Greeting Card?”  This response was related to the petition Hallmark: Create Hospice Cards.

“Odell says she also recognizes that each person’s experience is different.  “Bless her [Holliday’s] heart for leading the way,” says Odell.  But she adds that Hallmark reflects what people are talking about, rather than “picking up the flag and leading the charge.”
“We’re always listening, but we’re listening to a lot of people. We’re talking to a lot of people…and we are always paying attention,” says Odell. “As people are more open about talking about things, yes we reflect what they’re talking about. But we’re a mirror of that…There are isolated data points and we certainly take that into consideration.”

So Hallmark is calling itself a mirror and does not see a reflected need for hospice cards.  I do not find it surprising that the viewpoint of the dying is not well reflected within our society. 

After all we do not give them mirrors.

We give them washed out cotton gowns, institutional surroundings, numbers instead of names, windows that do not open, diapers and silence. 

But we could change that.  We could change it by talking to the dying and sharing their worldview.  We could change it by taking small steps that turn the tide of culture.  If Hallmark created hospice cards and placed them in stores, that would be an amazing step on the journey to better care of everyone at end of life. 

Hallmark you can be a mirror, but I ask you to be a signal mirror.  You should send a message, a beam of light that can be seen miles away; a message that can be opened and read by someone who needs it.

Read by someone in a room without mirrors.

Please Sign the Petition Hallmark Create Hospice Cards

Saturday, February 16, 2013

What I learned on the road to the Shorty’s

January 26th was my son Isaac’s 7th birthday. 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. 

I finally (mostly) finished the Eliza painting and received a request from The Hilgos Foundation focused on the arts within patient populations coping with dementia.  They were competing in the #charity category of the Shorty Awards.  I love their program, so I voted for them immediately.  Then I guiltily remembered Lisa’s nomination. 

So, I filled out my profile page and began the incredibly hard steps of a twitter campaign.

I have learned so much from experiences like this one.  My friend Ted Eytan has suggested I stretch my wings and try my hand at challenges several times.  He suggested I compete in the Sunlight Foundation Community Health Data Initiative in the spring of 2010.  I entered a painting focused on comparing hospitals into a competition filled with apps or website design. I lost; well I got an honorable mention… but in the traditional sense I lost.

But what did I win?  I learned a great deal about before it existed. I learned about HCAHPS scores before folks we even talking about Value Based Purchasing. Roni Zeiger wore an “Art Jacket” on stage before there was a gallery.

I think that is a win!

In the fall of 2010, Ted also introduced me to the Ashoka Changemaker Competition and I entered 73 Cents and the concept of painting about data and patient rights on walls.  Once again I lost.  But what did I learn?  I learned about so many amazing activists around the world and the great projects they were working on.  I supported others on their journey. 

I think that is a win!

Next Ted told me to enter “Body Shock the Future” from the Institute for the Future.  I entered a painting focused on the unhygienic use of the patient bedside tray table as both a changing table and feeding tray.  It is also one of my favorite paintings because I captured my late husband’s expression perfectly.  Once again I lost.  But I learned how to campaign more effectively this time.  The painting did get shown to a wider audience and a couple of years later  I would meet the designer Michael Graves at TedMed; I talked with him about it.

I think that is a win!

So last fall when I decided to crowd-fund the Partnershipwith Patients Summit in Kansas City, I had plenty of practice doing an online campaign.  We would need to raise 20k to barely break even.  If I failed at this campaign, I would let down so many patients, not to mention my friends at Cerner who put trust in me.  I would do two different campaigns simultaneously one at Medstartr and one at Healthtechhatch.

This time we won.  We made our goal!  Partnership with Patients happened.

I think that is a win!

Lisa Fields nominated me on January 26 for the Shorty Award in #activism.  I have been campaigning diligently on twitter since February 5th.  I currently have 378 votes and need about 100 more to finish in the top 6.  Those in the top six will be judged to decide the winner.  Based on the high level of difficulty getting just 378 votes in 11 days, I think it improbable that I will finish in the top six.

I probably will fail in my attempt in the #activism category for the Shorty Awards.

But what did I win? 

I was on twitter often enough that I engaged in far more chats than I normally do.  So I was there to support Lisa Fields when she hosted the @TedMed chat #GreatChallenges on end of life. I joined the conversation and mentioned the concept that Hallmark needed to create hospice cards.  I have been suggesting this idea for almost a year on my blog and to Hallmark directly through customer service.  I think it would help normalize conversations with those who are dying.  But the #greatchallenges conversation was so inspiring; I built a petition on immediately.  Members of the tweet chat began signing it, and now I had two campaigns underway!

Now, some folks would think twice about taking on another campaign in the midst a current one.  Some folks would wonder, “How will this make me look?  Will people think I am doing this for added exposure?”  I admit I paused for a couple minutes with precisely that worry.  And I was not wrong, as I was accused on twitter days later of exactly that motive.

So I want to make something very clear. 

Everything I do is to improve the patient experience.

The Walking Gallery, conference painting, speaking, live-tweeting, blogging, entering competitions like this one, all these things I do so we can spread our vision of truly participatory medicine in which patients will not have to suffer.  In so doing I have met amazing people who would do just the same, like Ted and Lisa.  When I am offered an opportunity that could grow our network of friends, I say yes.  I call these moments “God moments.”   Sometimes when opportunity or providence knocks it does so in the guise of a tweet.

As these dual campaigns continued the web of friends spread, until Miriam Cutelis a fellow parent posted a notice about our work in advocacy in my son’s elementary school online forum.  She encouraged parents to sign the petition for Hallmark to createHospice Cards, take the Partnership With Patients Survey and to vote for me for the Shorty Award.  Soon I was greeting local parents on my twitter feed.  I love it when worlds collide!

In November, I delivered a speech with Ted.  It was entitled Bouncing a ball alone: Grokking Failure. We presented it at TEDx Detroit.  It was a very unorthodox speech.

We literally bounced a ball onstage :) and spoke of things often not spoken of.

Ted was willing to stand on stage with me, fail or win in the name of better communication for all.

We were embracing failure.

I want to thank everyone who voted for me in The Shorty Award competition for Activism.   I know it might have been a bit uncomfortable logging in and voting.  I appreciate all you have done.

shorty thank you

(Oh, in case you wondered it is bowtie shaped on purpose, because bowties are cool.)

Even if I fail, we win.  Go Patients!!!


In the final hours Ted Eytan suggested tweeting nominations in a new way:

'I nominate  for a Shorty Award in  category because her work creates a healthier, more caring society."

And the race is on...

Friday, February 15, 2013

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 cards depicted in the statement, the “caring thoughts” are nice but I don’t think the last image of  “I hope you are taking care of yourself” is the best choice.   That makes it sound as though the patient could do something to rectify his/her situation if they just took better care.

We need Hallmark to take this issue of communication at end of life and hospice head on as they have for numerous topics like miscarriage as seen in this below screenshot.  This kind of clear messaging gives us permission to talk about life and death.

Hallmark also says they are rolling out a “tough times” selection of cards, but we need a clearer choice that that.  We need to see a “hospice” header right beside the “get well” and “thinking of you.”

We need HOSPICE cards.

Please sign the petition: Hallmark: Create Hospice Cards 


Update:  One comment suggested we should offer some wording for Hallmark.  I welcome your suggestions in the comments here or on the petition itself.

What would I suggest?  First more than text some folks look at the picture.  I would love to see more faces and people on cards.  Pictures often say things we cannot says with words alone.

All of My Children

But what words for this?  No one said that would be easy...

There has never been a moment I loved you more,
than this moment,
in this time,
I wish we could finish this race together.
I wish I could take the baton from you,
I wish I could finish the relay in your place,

You have always been the light within my life,
and now that night is coming

Know that I will always love you.

Here are some ideas from @BeHereThen she gives them to folks who want to ideas of what they can say.  


Tuesday, February 12, 2013

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, 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 the finest Ghirardelli.   

So sit back and give us your honest opinions for the next 5 minutes or so.  Feel free to be completely open.  These survey reports are anonymous.  We want to know how you feel, so we can direct our energy and strategy to resolve your most pressing concerns.

We will make the results of this survey available to the general public and concerned patients and partners everywhere.  

Thank you.

Sunday, February 10, 2013

Hallmark Please Create Hospice Cards

Do you keep all the cards you receive?  I do.  When I have spare time I even paste them into scrapbooks in all their lovely glory.  Behind each sentiment or floral cover, I cherish the words written by my friends.  I especially love the ones from my late husband with his signature and phrase. He ended each missive to me with the symbols: “Alpha, Omega. Infinity.”  Which means: you are my everything and I will love you forever. 

Those inside notes are priceless, but we should not forget the message that adorns each cover.  Do you peer at your cards and ponder the thoughts of the individual that made each purchase?  I do.  You see my mother rarely writes more than a sentence in every card she sends.  She does not think her words can say what she wishes to say.  So she ponders each card until she finds the perfect one that matches her love of her daughter.  She buys that one.  She mails that one.  I know to read the cover very carefully.

My mother depends on cards like the ones Hallmark makes to tell me how much she loves me. Due to the plethora of choice in the birthday card isle she always picks the perfect one.  And so it goes for my son’s births and other momentous events in my life.   But in the summer 2009 Hallmark failed my mother. 

Hallmark failed my husband too.  There are no hospice cards.  For two months after Fred was hospitalized we received a tower of “Get Well Soon” cards.  Fred rejoiced in each of these cards and they filled the hospital rooms, reminding Fred of all his friends who cared for him. 

When we went to hospice, the cards stopped.  We would get the occasional “Thinking of you” with the blank inside and few words from the sender.  Or God forbid, we would get a “Sympathy” card.   Fred raised his eyebrow with dark humor and would say: “I guess they don’t realize I am not dead yet.”

So recently, during a twitter chat sponsored by TEDMED, we were having a “Great Challenges” discussion about how to have an end of life conversation.  I suggested Hallmark needed to make hospice cards.  The group thought it an excellent idea, and I immediately set up a petition on

I encourage you to sign the petition here: Hallmark: Create Hospice Cards.

Soon people asked me why not start my own card line; after all I am an artist.  I responded, I was not doing this as business venture or as an attempt to have Hallmark use my work.  When I was asked how do we encourage people have “the conversation.”  I said the answer was Hallmark creating hospice cards.  They have an amazing reach into every corner of America.  If they create a card on this topic they will open up the conversation nationwide.

Some other people asked why a petition?  Why not ask Hallmark directly?  Well, I have been trying to do that for a year.  I called them directly and went through several layers of customer service and was told they would report the idea.  As I have several friends in the Kansas City area I also tried back channel contacts to no avail.  I have learned as an activist, sometimes you must be disruptive to be noticed.  Only when you are noticed can you be heard.

I began tweeting about the petition and Hallmark did respond that they had appropriate choices in their Gold Crown Stores.

I used their internal search engine to find a hospice card and found nothing. Here is a screen shot of my search:

Soon after we had 50 people sign the petition and a Hallmark spokeswoman responded to us:

"We agree that a card can help people support loved ones going through difficult situations and their caregivers, and Hallmark has many choices for this need within several different card lines. If you're having trouble finding one, we suggest visiting a Hallmark Gold Crown store and asking a sales associate to help you find a card for someone in hospice care. Thank you for your caring hearts."
Linda Odell
Hallmark Newsroom

I don’t think this response really addresses our request.  I am well aware that Hallmark makes blank cards and all occasion cards.  We need cards about the end of a life just as much as we need cards at the beginning.  We need the script that Hallmark so lovingly provides in almost every other moment in a life.

We need a card that my mother can send, a card that will say all the important things.  For there are so many people like my mother in this world, so many people who can have this important conversation if Hallmark just leads the way. 

No one should die with an empty mailbox.  

Monday, February 4, 2013

Please comment: Patient Safety Action & Surveillance Plan being requested by ONC for HIT


"Health IT and Patient Safety

On December 21, 2012, the Office of the National Coordinator for Health Information Technology (ONC) issued the Health IT Patient Safety Action and Surveillance Planfor public comment.
The Department of Health and Human Services (HHS) is taking actions on health ITand patient safety. HHS is calling on the private sector to take actions as well. To address health IT and patient safety, a shared responsibility among the government, health IT industry, patient safety organizations and health care providers is needed to support a culture of safety.
The Health IT Safety Plan may be viewed here. All public comments must be submitted by February 4, 2013, 11:59 pm EST to Based on the public input, ONC will publish the final Health IT Safety Plan."

DID YOU KNOW YOU HAVE LESS THAN 24 HOURS TO COMMENT? : Patient Safety Action/Surveillance Plan for Public Comment that is being requested by Office of the National Coordinator for Health Information Technology. 

PLEASE email comment to

Below is the letter that the great folks at TMIT put together and I added my own comments throughout; Sort of like a public comment MAD LIB.  Please feel free to do the same.  TMIT has been working on this issue for years.  You know TMIT, the non-profit that built so more patients could speak out at conferences.  Just sayin'

To the ONC Reviewers for Public Comments on the Health IT Patient Safety Action & Surveillance:


So glad to see you are tackling this thorny issue!!!

I thought I would throw my 2 cents in and provide comments and suggestions for improvement of the Office of the National Coordinator for Health IT Patient Safety Action & Surveillance Plan issued on Dec. 21, 2012, for public comment.

As you well know, I am very concerned about patient safety and HIT risks to my family and the community.

I am actively involved in patient safety and have been concerned about the safety testing of electronic health records (EHR) and computerized prescriber order entry (CPOE).

REQUEST: I would like to recommend that ONC certifiers work with a collaborative team and innovation that is already in place for post-deployment performance surveillance of Electronic Health Record and Computerized Prescriber Order Entry systems: the EHR-CPOE Flight Simulator, developed and made available by TMIT a 501c3 not for profit medical research organization.  TMIT has led patient safety initiatives for 30 years and has collaborated with multiple government agencies.

I have worked with TMIT on and have been one of their patient advisors for 2 years.  They constantly work to improve patient safety in all aspects including in HIT.

This tool has been successfully used to examine hospital safety problems in EHR-CPOE, is scalable, reliable, and is saving lives and money and is currently in use by Leapfrog.

Please do not waste any more time starting over in this area.  Please build from a strong foundation by a trusted source in this field.  I for one have gotten very tired of watching safety goals delayed for years while government grantees redesign the wheel.

This EHR-CPOE Flight Simulator has been used to evaluate hundreds of inpatient and ambulatory EHR systems in the United States and piloted in the United Kingdom. TMIT proposes to work with ONC-Authorized Accrediting Bodies, PSOs, and QIOs to further refine the simulators, and to have monthly webinars to educate hospitals on how to obtain and adopt this useful, already proven tool.

An article just released that describes the history of the simulator, data regarding hospital leaders confirming great risk in health information technology, and the global strategy that a team is taking to address this problem now. Entitled SAFE USE OF ELECTRONIC HEALTH RECORDS AND HEALTH INFORMATION TECHNOLOGY SYSTEMS: TRUST BUT VERIFY it is in the Journal of Patient safety, and it is available at:
Thank you for considering having agencies work with the existing team on the TMIT EHR-CPOE Simulator. Use of this tool would be in keeping with the original directive of the ONC, which is to employ the expertise and talent we already have to solve the problems inherent in current EHR and CPOE systems. Thank you for giving us the opportunity to comment on this important issue. 

Thank you for your time and your consideration of looking at this tool, as TMIT has kept patients in the communication loop since inception, and we were not a tacked on as an after-thought.


Regina Holliday

Patient Activist

Saturday, February 2, 2013

It is 7:20 here

Yesterday, I painted with a class of second graders.  They were little bundles of captured energy.  Their eyes sparkled and they could not be quiet.  The majority of the class finished the project early and a detail oriented few painstakingly completed theirs.  So I offered to tell the restless ones a story.  It was a classic tale of mirrors, apples and coffins made of glass.  I finished in the customary way.  Their voices joined mine in the refrain, “They lived happily ever after.” 

Life may be filled with great happiness; but often holds an equal measure of sorrow.  Life becomes a story, and every story ends.


On Tuesday January 29th-Wednesday January 30th, I attended C-TAC (Coalition to Transform Advanced Care) National Summit on AdvancedCare in Washington, DC.  The meeting was held at the Institute of Medicine National Academy of Sciences building at 2101 Constitution Avenue. The building is a lovely Art Nouveau edifice.  The foyer and the marble hall are bedecked with stunning mosaics, carefully maintained murals and early 20th century woodwork.   The remodeled auditorium is a modern, almost clinical design juxtaposed against the rich warm texture of the rest of the building.  I thought it the perfect venue for our topic of conversation.


When I arrived, I asked where I could set up my easel and paints.  The C-TAC volunteers looked concerned.  Although, I had been invited to attend and exchanged emails with the event planner, they had forgotten this detail.  My friends Ted Eytan and Alex Drane assisted me in finding someone who could determine an appropriate place to paint.  Soon we were talking to one of the facility directors.  She looked worried and said she would have to clear this request.  

She left us and we conversed quietly.  She soon returned to tell us the good news: I could paint if I stayed in the marble floored great hall.  The bad news: I could not hear the speakers from the hall.  So I spent the next two days ducking in and out of the auditorium listening for content, live tweeting remarks and then painting the memory of the day.  

The conference day was well underway by the time I began to paint and tweet.  The topic of the conference was advanced illness care. "Advanced Care" is a new euphemism for “End of Life,” which really confused me at first, because I thought it was some kind of gifted and talented version of healthcare.   As a child who struggled through grade school, AP classes were always out of reach.  I did mange to be in some honors classes though.  Honor courses encouraged deep insight, rather than high scores.  

At 9:30 am the panel presentations began with “Care Journey: Personal Reflections on Advanced Care.”  

Amanda Bennett from Bloomberg News told us about her husband’s 7 years battling kidney cancer.  I listened intrigued.   Our family only had 3 months after the diagnosis of my husband Fred’s kidney cancer.  I began to paint with our stories entwined. 

Kidney Cancer Tree

I painted the two kidneys, the inferior vena cava and the descending aorta as two trees in winter; a tree of life and a tree of knowledge reminding us of a bargain struck so long ago.  To the right I painted Amanda’s experience with her husband’s sickness and death.  He died experiencing over-treatment, with blood draws and tests until the end.  I painted Amanda retreating within her visitor’s chair, completely nude and vulnerable as the machine of medicine chewed upon their life.  A resident stands hesitatingly preparing to tell her the end will come soon.


To the left our family story unfolds.  

Fred spent two months on the roller coaster of curative care and one month in the blessed embrace of hospice care.  He lies upon his bed as we gaze at each other. Our three-year-old son Isaac plays with a toy train beside his Father’s deathbed.

A good death

Above within the branches of the tree, a nest is perched where the heart resides.  Within the nest a newborn babe searches for the eyes he can trust, the eyes that see the soul.  As Brad Stuart fromSutter Care at Home reminded the crowd.  We end as we begin, our eyes searching for the ones we love.


I spent the lunch hour painting as folks looked over with curious stares.  One lovely young woman came over to tell me she worked in Health Information Technology and was so glad to see someone she recognized from the world of HIT at this event.  I said I understood and wished that were more of us with attending meetings in HIT, End of Life and Patient Safety. 

Soon Danielle Turnipseed from IOM (Institute of Medicine) came over to the easel while I was talking with Ted Eytan. I told her I hoped to be at Health Data Palooza in June but that would depend on creating a patient registration rate.  She commiserated with us.  Our talk led to mutual enjoyment of the walking meeting.  I said,“OH, I have an idea!!! We could have walking meetings with patients at Health Data Palooza!!! It could be cool!  Sort of like walking speed-dating between patients and tech folks!” Daniele assured me she would bring the idea back to the planning committee.

Soon I left for to pick up Isaac from school and returned on Wednesday for day two.  

Our first keynote speaker was Kathy Greenlee, Assistant Secretary for Aging and Administrator for Community Living US Dept. of Health and Human Services.  She spoke about the work of her office and encouraged all in attendance to come by and meet with her about this important topic.

Half of the storyWednesday’s first panel was entitled “Empowering the Public to Make Informed Decisions and Plans” Alex Drane was the moderator. By this point I had seen several panel presentations with speakers seated at a black fabric covered table and each keynote speaker was peering over a colossal podium. I was getting frustrated that we were only seeing half of their bodies and often half of the energy of a speaker without such physical shields.  

TED and TEDMED have figured this out; we bare our soul when we speak with our whole bodies.  A seated speaker is only telling half of the story.  Then I began to wonder if this presentation choice was not some grand metaphor.  For this was a conference about end of life but rarely did I hear the word death mentioned.  So on the barren field I painted a seated panel.  Their covered table is a coffin.  Most of the speakers exist as a torso above the covered table, but the angle is such that the last speaker to the right reveals his lower body is a skeleton.  Our surface discussion may not contain the word death but it lingers beneath.

As I stared upon this panel, Alex Drane told us a lovely story from that morning.  Her daughter had discovered that Alex has a cell phone that she will always answer.  Her daughter called her and after a pause asked, “What time is it where you are?”  Like many of us who speak about the future of healthcare Alex flies across the nation empowering others.  Hours as well as miles often divide her family.
"It is 7:20 here."
Alex smiled and said, “It is 7:20 here.”  There was silence on the line as her daughter did some quick mental math.  Soon she responded with a joyful voice, “It is 7:20 here too!” 

This painting has a name: “It is 7:20 here.”  

And it is.  

We are living in this moment and there is no better time to talk about our wishes with the ones we love.  
So in the foreground of this piece two clock faces look upon each other.  Each says 7:20 and the hands that depict the time are the hands of Alex and her daughter.  The clocks also represent the stylized bulb of an onion.  For as Alex’s daughter could surely tell you “Onions have layers” as does our conversation of this day. 

It is 7:20 here.

So in the spooling circles above our clock faces there are pennies. 

For throughout this conversation about the care of those we love there is a thread shines like the sheen of money.  Did you know it now costs more to make a penny than what a penny is worth?  And so it goes at the end of life, when often a life is extended not for the benefit of the patient but for the pocket of another. 

Within the twinning branches pills have become leaves like a pharmaceutical Klimt piece.  The copper pills are the Sutent that extended Amanda’s husband’s life and sit within a shadow box in mine. 

NiagaraSoon beautiful Amy Berman (nurse and Senior Program Manager at the Hartford Foundation) began to speak, her hair a golden halo.  Her face serene as she told us she lived under a death sentence.  She has stage four inflammatory breast cancer.  This type spreads quickly throughout the body.  When Amy noticed it, it  looked just like an inflamed patch upon her skin.  But it had already spread throughout her body.   She was stage four and there is no successful treatment available.  Her oncologist began to explain an incredibly aggressive course.  There would be a mastectomy; chemotherapy, radiation and they would fight for every hour of her extended life.  She looked at the doctor and enquired, “Why a mastectomy when the cancer has already spread?”  He looked at her nonplussed and replied, “You don’t want to look at it do you?”

Amy could not believe it.  He was recommending cosmetic oncology.

He further added this was the course of treatment he would recommend to any of his patients.  But Amy was not “anybody” and she did not want cookie cutter recommendations or a life that was lived in more pain than was necessary.  Amy wanted to live to her fullest and then wanted a Niagara Falls.  In end stage cancer, patients make a choice. They can choose aggressive care and plummet down a step vertical and then float on a horizontal of lingering pain before death.  Or then can live life on the fast-paced stream without added nausea and pain until they plunge down at once as the end nears.

I painted Amy in her Niagara Falls moment as the wind whips her patient gown around her body. Her stance is sure within her half-barrel and her face upraised to greet her choice with open arms.  As I painted it thus, one attendee said, “I thought the barrels used at Niagara were full barrels.” I responded, “Full barrels are used by those who think they might survive the fall.” 

Soon Bill Hanley from Twin Cities Public Radio spoke.  He followed Kent Wilson from Honoring Choices Minnesota.  They both spoke of the amazing program Honoring Choices and the teachable moments that arrive when PBS works hand in hand with hospitals to create a safe place for conversations about end of life.  This is my second time to see them speak and I represented their great work with a tombstone beside our heart tree.

That should have been the end of the panel, but Alex had offered me two minutes to speak.  I have never spoken before about a painting that was only half-finished, but perhaps that was perfect time to speak about this painting. It continues the metaphor of the half-told tale.  We will never make the strides we need to make in end of life care until we value the end like we value the beginning; until we see hospice cards in the Hallmark isle as much as we see cards that welcome new babies.

I stood upon the stage and explained the painting was a landscape and it was set in winter.  I went on to tell the crowd that I taught preschoolers watercolor landscape for 7 years.  I would say, “See the top of the painting is the sky, the bottom is the ground. See where they seem to meet, that is the horizon line!”  We would start off painting summer because that was easy and filled with blues and greens.  Then fall with its yellows and reds and leaves falling.  Then we would paint winter and the colors are dark and the trees have no leaves and everything is dead.  And this is where many teachers stop when they teach the seasons.  

But we would stop at spring; we would stop with cherry blossoms.

I told them that the painting was inspired by the twining of Amanda Bennett’s story and my own.  She suffered so, as did her husband with no time to say goodbye.  We had the better death at home with friends and family.  My husband and I spoke all night the night before he died back when I thought terminal restlessness was just a Tom Hanks film.

Then I glanced over to Alex and said, “I had been asked say something moving in two minutes and I don’t know if I did, but my husband was able to.  He said goodbye to his sons by performing a puppet show in hospice.  This past fall we marched in the Million Puppet March in Washington DC in Support of PBS.  In support of all that PBS does to educate us.  We carried signs with pictures of my husband in hospice and told folks all about Honoring Choices in Minnesota.”   I told them that is what this is all about.  We can say goodbye with puppets and remember the promise of cherry blossoms.

I painted for the rest of the day with people coming over often to chat. One was Amy.  We hugged and laughed because we were wearing almost identical outfits!  As she said we were sisters from another mother.

Soon we broke into sessions.  I went to the Interfaith Workgroup on Spirituality.  They are looking for suggestions on how to move things forward.  I volunteered the power of the twitterverse to help the cause.  So feel free to join the conversation!

That supper, with no prompting from me, my seven-year-old son Isaac told me he wants the Star Wars Imperial March to play at his funeral. He also wants a graveside service.

I responded, “I want to donate my body to science and then that is usually followed by cremation. So I won’t have a grave.”  His eyebrows rose and he said, "You don't want a tombstone?" I responded, "Nope." He replied "Well, there will be no crayon rubbings of your tombstone then." And proceeded to eat his macaroni.

Now, was that so hard?