What having "One foot in the grave" has taught me about Advance Care Planning

Occasionally folks will ask me, "Do you ever miss your foot?"  My response is usually something like, "Definitely not my post-accident one....but my pre-accident foot, yes.  That one was lost at the time of my accident."  In companioning patients in end-stage / end-of-life situations these days, I am reminded of how difficult and arduous the soul-searching can be... to know what to do when a part of you....your loved one, is not coming back in the way they once were.   No matter how we look at it, loss is hard.  It seems we do all that we can to avoid thinking about it. 

My post-accident ankle brought a lot of pain, heartbreak, and longing for a life I had once loved.  Thankfully, amputation provided a better "quality of life" alternative to walking around in this metaphorical middle-world of wishing for the past yet wanting to move on, (and life is different as an amputee, for sure).  However, there is an energy that gets all clogged up in a person's psyche when feeling stuck, powerless, and in pain.  We forget the emotional toll this can take on a person and their support system.  Without realizing it, the "suffering person" often feels guilty for not being their "former self" and for "bringing people down", despite all efforts for folks to assure them that this is not the case.  

I know a family right now who is going through the arduous process of learning how to let go.  Pam has been battling end-stage cancer for six months, and has undergone four hellish years of exhausting all options to treat her progressing disease, which has now invaded her entire body.  Like me and like many of us, Pam is tough.  She has, as they say, fought the good fight....but she is tired.   The family is tired.  Everyone is tired.  But the energy is stuck in trying to hold on to the physical life she has left rather than celebrating and embracing the amazing spirit she is and offering it back to the universe.  

One thing I have come to know without question is the fact that all of us have a terminal condition.   Short of cryogenics becoming a reality (as in the sci-fi thrillers), none of us is making it out of this world alive.   It might sound morbid and pessimistic, but there is a freedom in acknowledging this reality earlier rather than later. We have no crystal ball to know when it will be our time to exit this dynamic and beautiful giant green and blue earth marble that we inhabit.  Remaining in denial about our eventual demise only serves to stifle the life-energy that we all embody.  It's an energy and a spirit that dances and communes with a place beyond the walls of our skin. 

Two years ago while in Florida (getting my first prosthetic leg) I received a phone call from my mother informing me that my dad had suffered a pulmonary embolism.   My mom found him non-breathing and unresponsive on the floor and immediately gave him rescue breathing (yay, mom!).   Luckily, the clot became dislodged, my dad got to the hospital and was treated promptly.  It was truly a "best case scenario."  However, as luck would have it, the proverbial genetic canon on my dad's side is fully loaded with cardiac problems.  Whether you aspire to the understanding that "life is a crapshoot", the belief  that we are part of something greater, that we are all inherently doomed to the underworld, or that aliens will inhabit our bodies at the moment of death, it does behoove each of us to have a discussion about what we would like our final days to look like while we are in our most sane minds, and earlier rather than later. 

Way too often, we have all seen families torn apart by unforeseen challenges which present themselves at the end of life.  In these circumstances, people can become literally and figuratively out of their minds, because it can be too tough to handle hard choices when we are still reeling from the trauma of finding out horrible news. 

To begin the discussion....to start talking about these things is enormously important.  

While medical technology has progressed by leaps and bounds over the past twenty years, so have medical complexities, and thus, our choices.  We do ourselves a disservice by giving away our power to make choices if we don't discuss these issues while we are still able.

Before my accident, I never would have thought about these kinds of things.  "It's depressing," as some of us say.   But is doesn't have to be. 

Talk about what you value.  Talk about what are the non-negotiables of your life, and what, if projecting forward, you think you could or couldn't handle.  Also, know that these things could change... because life is constantly evolving.   Be sure to have these things in writing, and have them on-file with your medical professionals.  

Denial can be a horrible thing.   But not engaging our brains and our hearts in this very human experience is what makes it horrible.   Having a plan in place can be an emotional life-saver.

If I would have given all of my power over to the medical folks to keep salvaging my leg, I would probably be depressed and drooling all over myself by now.  Thankfully, there are medical folks out there who embrace the idea of partnering together in medical care for what is best for us and our loved ones.   Embracing the complexity in our lives is a part of the human adventure.  Talking about advance planning and decision making for healthcare is a part of that adventure.  

Just DO IT.  Then get busy living!

Advance Care Planning resources to begin the conversation can be found here: 

US Living Will Registry

Advance Planning, 5 Wishes

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289

"Talking Death" Discussion Cards