Brittany Maynard, 29, who is featured everywhere (People magazine, CNN, CBS, Compassion and Choices website) shares details of her terminal brain tumor and her choice to end her life. The physician writer Atul Gawande with his latest book Being Mortal Medicine and What Matters In The End recently appeared on Jon Stewart telling us to attend to life with meaning, a life rich and full as possible under whatever the circumstances. These are closely on the heels of books like The Cost of Hope and Knocking on Heaven’s Door and websites such as Death over Dinner and The Conversation Project.
Since it appears we are talking more about dying could it mean that this great big taboo that makes us all not be prepared for death is coming undone? Could this be the baby boomers latest and perhaps greatest cultural movement? Is Brittany Maynard’s stance on how she choices to die making us argue among ourselves about her choices AND prompting looking down our own pebbled path of wonderment to our last days?
I wonder then and of course hope that all this talk maybe is making us consider end of life isn’t about doing what you can. That we are beginning to look beyond (or get past) our fixation with medicalizing dying, refocusing on life itself and what’s been important to you and realizing whatever that is still is in the end.
Surely too part of this lifting of the taboo is recognizing that how we live well when death is close means different things to different people. There’s no wrong way to die. What’s wrong is not talking about what’s really important to you besides simply just living longer. If ever a taboo itself should be deemed improper and unacceptable to society it’s this one! I say goodbye and good riddance.Tags: Atul Gawande, Brittany Maynard, Compassion and Choices, Dying, End of Life
I call here Weez. Louise and I are best friends. It never mattered that nearly 30 years separate us. Weez is 93. I’m 64. She is one of those rare birds who speaks without effort about life, love, growing inwardly, aging outwardly, and dying. Listening, your face is a rictus of sheer delight and wonderment. It’s as if you’ve been fed. You are made full.
These days she is growing backwards, more like a naked baby bird. Fragile and delicate as she moves along her journey toward oneness.
I want to share a few of her verbal gems. I liken them to colleting sea glass, treasured.
About dying, “Everyone’s doing it, why not talk about it?”
“It’s my first time growing old and so I haven’t had much practice,” adding, “It is pretty hard to quote yourself, when you never heard it before.”
“When people say there’s something not right about you, well, I’m expecting this is exactly where I am, where I’m supposed to be at 91.”
“I always wanted to die consciously and so it better happen real quick or it isn’t going to happen.”
“I show up at breakfast and I really am who I am, but all these people near my age don’t have any idea how hard we work at appearing as we are. We don’t want to give up looking and being perfect. That would be a real sacrifice.”
“I love being admired. I always have. But now I believe it is time to give that up.”
“I’m from another generation than the other ones all around me and so my head can get confused hearing about what they are all doing and talking about. I have a lot of memories. I realize I’m thinking about something when I was 9 years old and that was a long time ago. I am nearly beyond my time.”
“I know as my time draws nearer I’m thinking about all these things and checking the suitcase. I see myself packing and having everything in place but I don’t want to find that I’m more worried about whether I have the right things than being in the moment.”
“I talk about living in the presence. I’m reading a book that refers to this as living in the now. I talk about the eternal now, and now I know the presence I refer to is the now now.”
“In my condition, all I can do is see everything.”Tags: Aging, Dying, End of Life
Ten of us gathered for a family style dinner at my home in Virginia Beach on April 14th 2014. It was planned around the 7th Annual National Healthcare Decisions Day (NHDD) on April 16th.
We were following in the footsteps of the work of a group of healthcare and wellness leaders who are committed to break the taboo regarding conversations about end of life. This group launched a website and project on August 24th 2013 called “Let’s Have Dinner and Talk About Death.” www.deathoverdinner.org
Here’s what set our dinner apart from others
- There were nearly fifty years separating the youngest (26) and the oldest (73). That brought to the table many lifetimes of living.
- It was an evening all about living well, eating well, dying well, and the choices we can make in living our life to its end.
- Jim White, founder and owner of Jim White Fitness & Nutrition Studios, joined us to talk about these many things.
- We recognized that dying is about living. Living to the end of our days. That we are living until we die. It’s about our vitality and what we love about life, and when time grows short, what is most important to us.
- We chose to watch together two videos before we ate rather than have these assigned as ‘homework’ before this evening;
Randy and Sandy’s Advance Care Plan, 6 episodes on Vimeo where puppets showed us the light hearted approach to much needed conversation. https://vimeo.com/channels/722879
Imagine, a NHDD Speak Up Video, an amazing video on advance care planning, gracefully explaining why it matters for All of us.
What DID we talk about?
We began our meal with a toast to each other and to those who we carry in our hearts and are no longer with us.
Some of us had never experienced a serious illness of a loved one or themselves. Others had had a heart attach and were cancer survivors.
We talked about death and how we want to be remembered. How to deal creatively with death and making our life speak in a meaningful way. We acknowledged it was easier to talk about when we are gone and what we want left behind and remembered for than to talk about how we want to die.
We talked about the fear of the unknown and nonexistence. We knew this to be a topic for another time.
We shared our stories of someone, a loved one who died, a parent, a brother, a grandparent — those young, who died too early and those who reached a ripe old age before they passed. One shared about a son who died at 16. A story was told about a car crash that could have been catastrophic but they walked away.
THE SIMPLE TRUTH ABOUT OUR EVENING?
There’s nothing like the present and living each moment.
That we should be prepared & have a plan.
That dying we can on our own terms.
Here’s what emails followed our evening:
The evening was magical. Everyone opened up to share their experiences while the others sat quietly and absorbed the words.
We walked away feeling more at ease about discussing death. The food was so healthy, comforting and tasty.
It was amazing…I already have 2 couples interested in the next one!!
(On a lighter note) I adored the idea of an off switch.
I am thankful for this wonderful dinner to die for, dying and dining, or dying to eat night… “Which ever may apply ,” 🙂 I think the time is right for everyone to share their thoughts of life’s last breath and how they prefer to deal with it.
And for me, the hostess: I’ve been going over and over our evening. I wasn’t clear what would unfold. But what was apparent, was that all of us were willing to be part of creating this evening together. We simply let it happen. I continue to feel empowered …and comforted and released.Tags: Advance Directive, Death Over Dinner, Dying, End of Life, NHDD
Yes, I write about dying….how we die in America, the choices and problems we face, what can go wrong, and how to make dying personal. I have to tell you this: I learn incredible things every time someone talks about “talking about dying.”
We each express ourselves in different ways and the telling is fascinating to me. It’s like art — each of us looks at the same thing and then draws something completely different from anyone else’s sketch or painting.
It’s the expression that’s so powerful.
Here’s an example. My friend, Dimitry, asked me to tell him about The New Art of Dying and I gave him my best 15-second elevator explanation. Then, what he says next, blows my mind —he not only got what the book was about but his description seemed far better than any I’ve expressed about a book I wrote!
Here’s what Dimitry said:
“Oh, you mean it’s like a wedding planner. You know, weddings are personal, customized, and all about you and what you’re about, your values, your beliefs, and your family. Your book is a dying planner, knowing your options, choosing, talking about it all to make sure your dying IS so very personal.”
Here’s another exchange I want to share. My friend, James, and I were discussing dying care and the gift we can give each other by talking about it.
“It’s like there’s the matriarch of the family who holds the family together. She’s that sweater that wraps around everyone. So, when she’s dying, and there’s been no conversation about how she wants to die, a thread gets snagged and the sweater unravels completely. The family is distraught about what to do without her orchestrating. They’re left guessing and disagreeing about what care she did or did not want. It’s an ending that’s made sadder simply because much-needed conversations didn’t happen.”
What a powerful image!
Thank you, Dimitry and James, for gracefully expressing yourselves.
I hope this blog post helps others find their words for talking about dying.Tags: ACP, ACP Decisions, Advance Care Plan, Dying care, End of Life
ACP Decisions, Advance Care Planning, Dying, End of Life
Yes, advance directives are about when you are seriously ill or at end of life, but you shouldn’t wait until then. You should have an advance directive (or at least appointed a healthcare proxy) long before that just in case. This way, your loved ones know the care you want and you have someone you love speaking for you when you cannot.
TWO: AN ADVANCE DIRECTIVE CHANGES AS YOU CHANGE
An advance directive form isn’t something you complete and then leave dormant for years. It is, in a sense, organic and living. It evolves, as you grow older, expressing something different from what was stated in its original form. That’s why an ongoing conversation with family is important. What care you’d want at thirty is different from what you’d want at sixty or eighty.
THREE: AN ADVANCE MEDICAL DIRECTIVE DOES NOT MEAN “DO NOT TREAT”.
It means being treated the way you want.
Yes, this post probably oversimplifies all the paperwork and choices around dying care wishes but my hope is it empowers you to create an advance care plan that’s about you and how you want to live life to its end.
You can lead by example. A brother talking to a sister, an adult child to a parent, parents to their children, a husband to his wife, friends with friends.
Just say yes. Have the conversation and a plan about how you wish to die and then….well then, we begin a person at a time to make the taboo around not talking about dying a preexisting paradigm.Tags: ACP Decisions, Advance Care Plan, Advance Directive, Dying care, End of Life