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?”