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
ACP Decisions, Advance Care Planning, Dying, End of Life
For these professions you are required to select someone to speak for you when you cannot in case of a medical crisis. Of course it makes sense because these individuals work at higher-risk jobs than say those of us who work behind a desk or sell merchandise. These brave souls live more on the edge.
But a medical crisis or emergency can happen at any time to any one. So why not be prepared? Why not decide that this mandate is a wise one?
BUT…..WHO SHOULD BE REQUIRED?
Twitter me your response with this tagline #HCProxy Mandate:
Yes or No for mandating and who should be required to do it.
I’ll tally it up & let you know the results from the responses.
Here’s the beginning of a list of possibilities:
- Selective service registrants
- High school students over 18
- College and university students
- Hospital staff
- Licensed healthcare professionals
- Anyone with health insurance
- Medicaid and Medicare recipients
- All federal employees, or state employees, or city/county employees
- Everyone with a driver’s license, commercial driver’s license, boat owners
- Medical and law school students
Now this possibility, medical and law school students, could be a good one to start with because advance medical directives are associated with legal and medical choices. Our future doctors and lawyers could insist on selecting a healthcare proxy, an action speaking volumes about its importance of having someone there in the decision making process that knows your wishes for care and could make sure they are honored.
None of these cost much to implement. Some more than others for sure but still, isn’t this cost easier to bear than the cost of not having someone speak on your behalf to say what you want or don’t want for care?
WHAT DO YOU THINK?
Let me hear from you. Twitter me, @murdockdiane, your response with this tagline #HCProxy Mandate: Yes or No for mandating and say who should be required to do it.Tags: Advance Directive, Advance Medical Directive, Dying, End of Life, Healthcare Proxy
I honestly believed these findings applied to everyone else that I didn’t know. Certainly not my friends. Not my family. And so I decided to find out….. Were my loved ones talking about dying and why or why not?
I also wanted to know what’s behind these findings. What are the explanations and excuses for not talking about dying? For not having appointed healthcare proxy? Or, not having an advance medical directive?
What I found out validated the reports! I can’t believe it, not in my backyard. Not my loved ones. They choose not to have conversations about wishes at end of life.
Here’s what I heard and maybe you might find that some of what’s said sounds familiar.
Sure I procrastinate about planning how I wish to die. I’m healthy and I’m not old.
What’s the point of planning for something you have no control over, we’re all going to die somehow.
When my Mom died, it was wild, last minute decision making among the family, horrible arguments, sleepless nights and worst of all the guilt I live with everyday of letting her die. You’re asking me if I talk about dying? Nope, don’t see the point because it’ll get wild and crazy anyway.
I have chosen someone as my power of attorney. What do you mean that that person can’t make medical decisions for me?
I keep meaning to get around to it but there never seems to be a right time.
Why have family believe I have a death wish?
When I look back I know I should have spoken up for my Mom, but I also knew I didn’t want to feel guilty about not doing everything possible to save her. I’m sure my kids will be the same way regardless of what I say I want or don’t want. No, I don’t talk about it and I don’t have an advance medical directive. I don’t see the need. It’ll all work out.
Of course she can speak for me, she always has! Why sign a piece of paper?
I don’t like talking about dying. It’s morbid.
You know, it’s easier to talk about death and after you’re gone. I’ve had no problem writing up who gets what and where I want to be put to rest. I even created a list of songs to play at the wake I call, “Tunes to Die For.” That’s easier.
Just shoot me.
When the time comes, leave me on the hospital’s doorstep.
I don’t want to burden my family with conversations about dying. What happens, happens. They can handle it.
Leave it up to others – you know, the doctors, my wife, the kids.
So, there you have it. The reasons behind not having the talk generate this: choosing to pass the responsibility to others without choosing someone to speak on your behalf when you cannot.
Here’s something about health care proxy that I think you should hear:
Charles Sabatino, Director of the ABA’s Commission on Law and Aging said, “We do know that the appointment of a health care agent or proxy improves the decision making process, from both the provider’s and agent’s perspectives, because it clarifies who should be directly involved in the decisions at the time decisions need to be made and allows the decision-maker to weigh all the facts and options in real time. However, (and this is really important) merely an appointed agent does not necessarily mean that the agent is well-informed about the patient’s goals and wishes or engaged effectively in decision-making on behalf of the patient.”
Appointing a health care proxy is a big deal!
And yes, it’s better to have one than not have a plan at all. But better still, is to choose someone who really knows you and your wishes for dying care. Someone who has helped you along the way and will be there to help you in the end.
There’s another way I want to say this: That having these conversations can be gift to give to yourself and your loved ones about the lasting memory of the last days you live. And that’s a most incredible ultimate plan for end of life.Tags: Advance Care Planning, Advance Medical Directive, Charles Sabatino, Conversation Project, Dying, End of Life Care, Health Care Proxy, The ABA Commission on Law and Aging