National Summit on Advanced Care: Thoughts and Takeaways
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 20thcentury 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 Eytanhttps://twitter.com/tedeytan 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.
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.
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.
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.
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 here 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.
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.
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.
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 told them that the painting was inspired by the twinning 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.
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.