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
But these days, you can flip through channels and hear commercials and see public awareness ads on such subjects as depression, mental illness, AIDs, breast cancer, domestic violence, autism, memory loss and Alzheimer’s. This is a good thing. Hearing about these things can help those who are in the need to know and help others become aware and understanding.
Isn’t it time to lift the taboo about not talking about dying? Isn’t it a good idea to have infomercials about how to be prepared, have a talk, and have a plan?
There’s a lot of discussion on this — opening up and talking about end of life — on the web. Wonderful and empowering sites. To name a few: The Conversation Project, Elisabeth Kübler-Ross Foundation, Death Over Dinner, National Healthcare Decision Day, Compassion and Choices, and ACP (Advance Care Plan) Decisions. These organizations and related sites center around being prepared for the inevitable and dying the way you would want.
Yes, it’s a fact. We all get dying, somehow, someday. It’s unavoidable. A dying awareness campaign applies to everyone. The commercials wouldn’t prevent or cure ourselves of dying but they’d make us aware of the need to know ourselves, the choices (medical, palliative, legal), and the problems that we may face when dying.
Let’s face it, being discerning about all this frees us to focus on something very important when the time comes – letting go and helping our loved ones let us go too.
I believe it’s time to launch an awareness ad campaign on how we die and how you can be prepared.
What do you think?
I’m not one to suggest something if I wouldn’t do it. So heads up, I’m currently working with others creating YouTube infomercials that will be coming shortly. Probably by February 2014. I’ll keep you posted.
Tags: ACP Decisions, Advance Care Planning, Compassion and Choices, Conversation Project, Death Cafes, Death Over Dinner, Elisabeth Kübler-Ross Foundation, NHDD
Last week my golden retriever Belle and I went to visit our friend Louise Wilson at Atlantic Shores, a continuous care facility in Virginia Beach. We sat quietly in the lobby waiting for her. Others who lived there stopped to pat her head, scratch her tummy, and call her the sweetest things. She’s one of those dogs whose tail wags vociferously and face holds a wide grin.
A man named George came over and sat with us and said, “I have a story to tell you.” I love stories and so he began:
I had a golden retriever named Bobby, bout the same size as your dog. We got him as a pup when I was in my late 60s. Shared years of sitting around and taking long walks. Bobby, my wife, Greta, and I were all growing old together. He had that same smile just like your dog here, Belle. When Bobby was 14 he was having a lot of difficulties — trouble walking and standing. Eating no longer seemed to hold the same pleasure. He was simply old and ailing and in great pain. He looked as miserable as he felt; that smile of his wasn’t there anymore. His eyes spoke volumes and if he could have spoken, words were unnecessary. They would have been redundant anyway.
We decided we couldn’t watch him suffer like this anymore and took him to the vet. We felt it was best to give him peace and put him down. We left heartbroken saying our last goodbyes. We couldn’t bear to stay.
The vet called the next day, “I have something to tell you. Yesterday when you left, something changed with Bobby. He perked right up. We observed him and couldn’t follow through with putting him to sleep. Why not come over here and get him!” We were overjoyed to bring him home.
He was indeed like his old self and his smile was back. He ate a big dinner and curled up at my feet while I read a good book. Next morning, we found Bobby had died that night at the foot of our bed. You see, what happened is Bobby just wanted to come home to die and have us by his side.
George looked at me, “Good story, right?” “One of the best,” I said and thanked him for sharing it.
It truly was a great story how Bobby got his wishes without saying a word. I wish we could do the same about our care wishes when dying but it very rarely happens that way. And our silence on the topic of dying is associated with it being morbid and so we avoid the subject. But we need to have a plan about how we wish to die, where and what we want for care.
Morrie Schwartz, the old professor and humanist in Mitch Albom’s book Tuesdays with Morrie, said some powerful words that speak to the heart of how we die in America and how we don’t want to think or talk about it, “There’s a better approach. To know you’re going to die, and to be prepared for it at any time. That’s better.”
Tags: Advance Directive, Compassion and Choices, Dying care, End of Life
It’s opening us up to talking about our mortality. Even though illness and death are still very much technically driven, there are now things like blogs, websites, Facebook, and twitter chat that are all about people dealing with dying and serious conditions because they offer a safe space where they can let it out and talk about it.
A few examples of websites where you can share your story are the Conversation Project, What Matters Most, and Compassion and Choices. Illness blogs like CaringBridge and CarePages offer a designated space for you, your family, and friends to keep posted and correspond. And now there’s Vine, a free iPhone app enabling users to create six-second videos for friends and fans, which has huge potential for connecting others with what we are dealing with.
All these avenues help us release what’s going on, what’s painful, and what’s confusing. And what’s most important, I think is the listening to yourself as your sharing all this. It’s therapeutic and helping to figure out choices. It’s supporting this whole idea of knowing yourself and what makes sense to you.
This is getting at advance care planning, taking time to have a talk about how you wish to die and preparing a plan that states your wishes for care when you cannot express them yourself. Two good examples of resources for writing down your wishes are Five Wishes and Caring Connections.
This post is about getting the word out, sharing wishes for care from person to person, from parent to child and child to parent. You can give yourself the gift of being treated the way you want when seriously ill or dying. You can give your family the gift of knowing that the care given is the care wanted. You can do this but only by knowing what you’re about and what makes sense to you.
What do you think? Is there something you want to share with us?Tags: CarePages, CaringBridge, Compassion and Choices, Conversation Project, Dying, End of Life, HCSM, Health2.0, What Matters Most