|Photo Credit: Susan Kelly|
I love what Abigail Thomas says in her new book, What Comes Next and How to Like It,
You never hear it said, "He is passing away." It is
always a fait accompli. "He passed". How I hate it.
As if the body had nothing to do with it, as if the
body hadn't even been around at the time but off
playing Scrabble somewhere, or having a drink
while the tenant moved out. Dying is the body's
call, the shutting down of services is the body's
last bit of business. Give credit where credit is due.
Honor the process. Consider the simple dignity of
"She is dying." Or he died"
It is interesting to think of it as a verb.
We used the correct words comfortably, easily, but I don't recall talking very much about our own death and dying. That seemed far away. Now, of course, the inevitability of our own death is on the horizon, but we don't know how long that horizon stretches, and we better start talking now.
Perhaps you saw the Frontline interview with the Atul Gawande, the author of Being Mortal, Medicine and What Matters in the End or maybe you saw Jon Stewart interview him or maybe you have even read the book yourself. Our couples book group discussed it at our last gathering, and my husband Bruce and I participated on a panel discussing the book at Adult Forum at our church recently. We have recommended the book to friends and family as well.
Gawande, a surgeon, invites, no urges, us to ask ourselves and our loved ones the hard questions about end of life care and choices. He calls physicians and patients and their families to participate in "shared decision-making" when faced with difficult treatment choices. Gawande speaks in terms of our personal goals and how they impact our decisions, but also how those decisions impact our goals. He writes about a patient who says if he could watch football on the television and eat chocolate ice cream that would be good enough for him. Gawande's father, also a physician, when diagnosed with a spinal cord tumor says he wants to continue practicing medicine, but later when faced with more difficult choices he says what is most important is to make sure the college he supports in India continues to thrive and to visit his family there. Still later, when he became a hospice patient his goals modified to being able to communicate through email and Skype.
There is not one firm answer to the question "What makes life worth living for you?" Changes in our circumstances may change what has meaning and purpose in our life, and with changes in our answers comes adjustment and a closer understanding of what it means to be mortal. Gawande reminds us how for most of us the default position is to do something, fix it, try anything, but we may do that without reflecting on how the "fix" affects what we have said is most important to us.
Having this ongoing conversation with our loved ones about meaning and purpose and quality of life is different from stating our preferences about medical procedures and treatments--not that those are easy or unimportant, but they are more concrete.
Do you want to be resuscitated if your heart stops?
Do you want aggressive treatments such as intubation
and mechanical ventilation?
Do you want tube or intravenous feeding if you can't eat
on your own?
All good questions, but do they address your essence and your view of what it means to live?
Not long ago Bruce and I filled out the short version of a health care directive and designated our health care agents. We have done this before when we lived in Wisconsin, but we wanted to now use the Minnesota form and besides, it was time to revisit our preferences. I also took the opportunity to state what is important to me as I approach my last days.
I do not want to fight my way through and beyond
dying, but instead want to attend to the rhythms of
dying, breathing in and out on my own. I hope to
relax into dying. I want to talk about joys and gifts
and not procedures and tests. As long as I can eat, I
would want homemade soup and good peasant bread,
instead of the anonymous food underneath metal
covers on a hospital tray. Instead of wasting energy
going back and forth for treatments and doctors'
appointments, I want quiet and time to pray and just
be. I want time to hold my loved ones' hands and
to have final conversations of love and gratitude.
I know this doesn't cover everything. I know it won't answer every question that arises, but it is a start. I also know it is unrealistic to expect to have these deep conversations with physicians. This is work I need to do. These are heart to heart conversations I need to have with my loved ones. These are spiritual conversations that grow from truly acknowledging that we are mortal. And once we do that, what does that truth mean for how we live now and not just when we face life-challenging decisions?
First of all if you haven't filled out a health care directive, no matter your age, do that now. Get online and find the one for your state and DO IT. Then keep copies of that form where they can be easily found, such as the glove compartment of your car and NOT your safety deposit box. Second, start the conversation about who you are as a living, but mortal being. And once you start the conversation, even if all that is said at first, is "I want to talk about my wishes as I approach death," be intentional about continuing the conversation.
Be the family who talks about death and dying as a sign of love. I would love to know about your experience.
Resources, including videos
Atul Gawande http://atulgawande.com/book/being-mortal/
Frontline program http://www.pbs.org/wgbh/pages/frontline/being-mortal/
Abigail Thomas http://www.abigailthomas.net