…Practical advice on finding a connection with who you are, what you're about and what a good death means to you as you grow inwardly and age outwardly.
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Looking to the Future — Signs of Culture Change Surrounding Dying Care
Tag : Conversation Project

shutterstock_187897427Here’s a list offered by The Conversation Project that’s significant because it is broadcasting out there that we are working our way toward living life to its end the way we want to. But first, a statement from this great organization:

“This is not your average Buzzfeed list. No celebrities below. But nevertheless a few hats and horns are warranted because 2014 was the year when Americans finally began breaking the code of silence about end-of-life conversations. When The Conversation Project was founded, the media was full of static about “death Panels.” It was still taboo to talk about how we wanted to live at the end of life — the care we wanted, the care we didn’t want. We and many others believed it was the most important conversation America wasn’t having. It was important to change the culture, to change the cultural norm, that is, from not talking about dying to talking about it. Now, with a small ta-da, we say things are truly changing. We herby offer the Top Ten Signs of Culture Change in 2014.”

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Top 10 Signs of Culture Change in 2014

  1. The Institute of Medicine releases its report, “Dying in America,” that pushes the importance of honoring preferences on the public agenda.
  2. Atule Gawande’s book, “Being Mortal” on aging and end of life rises to bet seller list and stays there.
  3. The Conversation Project logs its 250,000 website visitor and The Conversation Starter Kit spreads from there to AARP, United Health Care, and even Consumer reports.
  4. “The Fault in Our Stars” proves that yes, you can so do a movie about dying and earns a stunning $48.2 million the first weekend.
  5. Massachusetts rules that doctors must have conversations about advance planning with terminally ill patients.
  6. More than 140 organizations in 35 states join The Conversation Project’s grassroots initiative to make their communities Conversation Ready.
  7. Roz Chast’s cartoon book asking the provocative and humorous question “Can’t We Talk About Something More Pleasant?” is named one of the Tip Ten Books of the year by the New York Times.
  8. Brittany Maynard’s illness and death provokes a national debate.
  9. The Writers Guilds East and West invite The Conversation Project and UCLA’s Global Media Center for Social Impact to engage screenwriters for scripts to “Die Well or Die Trying.”
  10. The American Medical Association recommends reimbursement to doctors for holding conversations.

shutterstock_172671014And I have to mention “Death over Dinner,” that’s all about change beginning at the dinner table. Check it out at wwwdeathoverdinner.org. This organization is using the dinner table to revolutionize how we discuss death.

A friend and I have and are planning dinners in the Hampton Roads area of Virginia. I have to tell you that these dinners are not morbid, but empowering and challenging for those who attend. Please join us by having one as well to tell a story, have a conversation, and change the culture.

Each of us can lead by example and help each other create a most personal end-of-life journey and in this way, as The Conversation Project states, break the code of silence around end-of-life conversations. Happy New Year!

Note: The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. The Project began 2010 when Ellen Goodman (co-Founder and Director) and a group of colleagues, clergy, medical professionals, and concerned media got together to share personal stories of “good deaths” and “bad deaths.”

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shutterstock_129035513Today commercials are on just about everything. And these everythings used to be definite unmentionables, even taboo. It was rude and inappropriate to talk about them even at the dinner table!

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.

 

 

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dianeshutter stockSurveys such as one by The Conversation Project tell us that nearly all of us believe we should have conversations about wishes at end of life but few of us actually do it.

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.

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1_Our online social networkIt’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?

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Posted on May 9, 2013 by Diane Burnside Murdock
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