Engage With Grace

I don’t know about you, but I love those promotional items I pick up at conferences.  I think it is really cool that my five-year old has a Health 2.0 water bottle and that my 13 year-old has a Cerner backpack.  I carry my Disposable Film Festival messenger back on every trip and I wear my Practice Fusion t-shirt all over DC.

Yes, I love swag. 

It gives me little happy chills to wash my brushes in my Microsoft Healthvault water bottle and my  favorite re-useable shopping bag is from Kaiser Permanente. I know companies give us these things to remind us of their products as we live our daily life.  Perhaps, I love them because I spent 16 years working in retail. I know the careful consideration that businesses take in choosing which items they shall adorn with their logo or message.   And I rejoice in the wonderful conversations I have with people about healthcare just because of all the logos and conference detritus in my life.  It is sort of like a wearing a sports logo, but you are self-identifying as a fan in a far more obscure genre.

My favorite piece of promotional merchandise is my wallet.  I have carried it with me everywhere for two years and five months.  It is very special.

The nice folks at Newman’s Funeral Home in Grantsville, Maryland gave it to me after Fred’s funeral.  Did you know Funeral homes had swag?  I didn’t know.  I didn’t know a lot about the process of dying.  It is not something we talk about very much in our daily life.

That is a shame. 

This month is Thanksgiving and I will pull out my wallet and buy all the fixings for a Thanksgiving meal.  And I will be standing at checkout thinking of end of life care.  I will roll my cart down busy isles whilst considering the wishes of my loved ones.  This is very special month for this is the time we congregate with family and have a chance to Engage with Grace.

I have written before about the amazing Alex Drane.  She founded a company called Eliza.  In the summer of 2008, Matthew Holt of Health 2.0 and Alex came up with the idea for Engage with Grace after discussing the fact that most people do not share their end-of life wishes with their family.  The Engage with Grace project revolves around the One Slide.  This is slide that can be included in a slide set and has five questions about end of life care. 

These are the questions:

1 On a scale of 1 to 5, where do you fall on this continuum?

1= let me die without intervention 2    3   4   5= don’t give up on me no matter what, try any proven and unproven intervention possible

2. If there were a choice, would you prefer to die... at home or in a hospital?

3. Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?

4. Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?

5.  Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advanced directive?

I asked Rosemary Gibson, author of The Treatment Trap and an authority on palliative care policy, “How do we prepare to ask such questions?”  She told me such questions were part of the reason she wrote her book The Treatment Trap.  She encourages readers to ask questions about potential treatment options early in their medical care so they are empowered by this experience to ask the big questions later.  So many people when they are diagnosed with a terminal disease find themselves on a scary rollercoaster of treatments not of their choosing.     

She recommends starting with simple questions to gauge our awareness of self and build toward these harder ones.  I know that a life of research and asking questions of doctors helped me to help Fred through his cancer journey.  The research I did as a mother led me to question the need for Pitocin in a natural delivery.   It led me to question the need for a tonsillectomy if both parents genetically had large tonsils.  These simple preparatory questions helped me be brave for the very hard questions to come.  I am advocating that you begin to ask questions about your care, that you begin to take ownership of your life and of your death.

And why not start this Thanksgiving?

Why not start to ask these questions surrounded by love and light and family?  Please do not wait to ask these questions as Fred and I did.  We filled out Fred’s Advance Directive at the first hospital.  We did it all alone.  Tears ran down my face as I read question after question to my newly diagnosed husband.  We had never even spoke of this in theory; we had never practiced. 

There was no one to help us.

Weeks later before going into hospice, we had to answer the questions again.  Again I sat alone with my husband, his eyes as trusting as a child, while I explained the DNR forms that must be signed before transport.   I stood steadfast at side supporting his decisions and I was thankful the family united around him with the goal of a good and peaceful death.
  

I did not know at the time that it could be so much worse, that this process can be fraught with more despair and anguish.  I did not know it tears some families apart when they fight about their loved ones final wishes.  I did not know some wives and husbands disagree with mothers and fathers.  I did know that providers could ignore an advance directive if one the immediate family members fight against it.

And this is why you need to talk about this on Thanksgiving.  You need to talk about this when every family member is there, so everyone is aware of your intent and decision.  So every one can support your choice when the time comes.   

I carry a funeral home wallet because the folks at Newman’s were kind.  They greeted my Father-in-law Fred Sr. and I, with soft words and acknowledged our grief and confusion.  They did not leave us alone to pick out a casket by ourselves.  They helped us fill out paper work and answered every question with dignity and respect.  

I carry this wallet with me, and death becomes part of life.  And every once in a while someone remarks upon my wallet and I can ask, “Have you heard of Engage with Grace?”

Painting a Gift for Alex Drane

I was at a dinner hosted by Mathew Holt and Health 2.0 in June of 2010, when I met Alexandra Drane. She was seated near me. I first saw her from behind. She was a slight woman in a light jacket. Her hair was long with sun kissed streaks. Matthew introduced us and as she spun around I was stunned by the presence of Alex. She was full of vitality and light. Within moments of meeting she told me about her company and her causes. Alexandra founded Eliza. Eliza is a company that uses computer technology and voice recognition software to help people to remember to take their meds and to schedule important medical appointments. She also told me the story of her sister-in-law Za. Za was diagnosed with cancer at the age of 32. She died 7 months later. She spent the last two months of her life in the hospital. She did not want to die hospitalized. Alex spent months fighting the system to try to get Za the best care. In the end, Za’s brother fought the hospital to help Za go home so she could spend her final days with her two-year-old daughter. Finally, Za got to go home and hold her daughter before she died. After this experience Alex, created Engage with Grace. It was a simple concept that involved asking important questions on a power-point slide. What if we showed one slide at conferences that asked five different questions about our end-of-life desires? What if we all took time to ask these questions to our friends and family? Could we have a better experience at the end of our lives?

The next day was Health 2.0 goes to Washington and I had a chance to see Alex speak. She was a dynamic speaker and she did a wonderful presentation of Eliza. I had a chance to talk with her that day and she said at some point she would like to commission a painting. We parted ways and time passed before I would see Alex again.

In October of 2010, I saw Alex at Health 2.0. She would tell me, once again, that she would like a painting. Perhaps a jacket like her friend Roni Zeiger had commissioned, or perhaps a painting for her father. We parted ways and agreed I would soon paint for her.

While attending Health Camp DC in November, Alex was emailing me about the painting. I answered her questions while listening to an unconference presentation. I was seated near two Eliza employees. I switched sessions and as the talk turned to drug compliance, I noticed that no one in my session mentioned the benefits of Eliza. I asked “Where are the Eliza folks?” And I as texted about the power of medical paintings with Alex, I spoke of the power of Eliza before a diverse group of medical professionals. Soon one of the Eliza staff came in and took over describing the system, and Alex told me the painting would be for her Father.

Later in November, Alex called me to describe her father. I was on jury duty at the time. During our short lunch recess, I stayed in the deliberation room and spoke with Alex about her father Douglas Drane. She described him as a loving, caring and energetic man devoted to many elements of alternative medicine… and he loved Dragons. Then the idea came to me, it would not be one painting, it would be two. This would be a juxtaposition piece that focused on balance.

This is “West meets East.” It consists of two 18x24 canvases. The background field is a deep bluish purple. Within this field, swirls of white form an infinity loop.

The left canvas focuses on elements in Western medicine, so the swirls of white on this side are suffused with pills and tablets. These are the drugs that can save a life or prolong it. A doctor looms over the patient in this scene. A look of concern is on his face as he provides chest compressions to our unconscious patient. He is trying desperately to save a life. The top half of the Doctors head is cut off in the frame. Is this case of a poorly framed shot? Or is this mechanical response on the part of the medical professional? Is this action without thought? The patient lays with her head dangling and her face serene. Her breasts are gone and are replaced with a heart shaped cavity in her chest. A stylized version of Alex Drane stares out at the viewer to the right of the doctor. Her hand is twisted and placed with the heart shaped cavity. Protruding from the skin of Alex’s arm is a child’s slide. Here is the One Slide Project. Here are the end-of-life questions that you should share with your family. Does this patient want to be brought back? Is this what she wanted at the end of her life? The patient’s body is supported by a western-style dragon. This dragon is reptilian and cold. It is green and blue. It is the color of money. It stands inside its lair; the hoarded loot within its claws are files upon files of medical records. Each record says EMR, EMR, EMR; and this dragon does not want to share its treasure. It is breathing a small tongue of flame preparing to destroy all that it cannot keep as its own.

In the right canvas the infinity swirls flow into an Australian aboriginal dot motif. This is dream time. This is where the soul meets the body. A massage therapist stands above our patient and rubs her back. She is serene and calm. Acupuncture needles are arrayed upon her face and an elongated needle upon her back forms a stylized caduceus. The wings of the caduceus are formed by the handprints of a child. The caduceus represents medicine, but also warns against false treatment. For not all alternative therapies are helpful, and some programs are more about thievery and profits, then health and healing. Our patient’s head is surrounded by a strong aura. Above this aura a Rosary is superimposed on the infinite sky. Is it Rosary beads and a Cross? Or is Orion and a compass rose? Where does faith reside within medicine and must it be disguised? Beside our patient’s face a bamboo shoot heroically grows out of our infinite swirls. Where is nature within medicine and how can green and growing things soothe the soul? This patient is supported by an eastern-style dragon. He is the red of fire, energy and passion. This dragon does not need to breathe flame, for he is flame itself. He is staring at his western counterpart with concern. He has no wish to destroy but desires to work in concert with the west.

These two paintings are meant to be shown together, for they are about balance. Patients will get the best care when we embrace the treatment path that is best for each patient. That means asking questions, answering questions and sharing information. Neither side is better than the other, but each part makes the whole.