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COTA: Website helps with difficult but important conversation

May 4, 2013

Even in this age with people willingly sharing all kinds of things with one another on social networks, there is one area of our lives where we quiet down completely.

The topic is end-of-life care.

I’m guessing your reaction to the topic was to immediately think about what you could do for the next few minutes besides read this column. But stay with me: I’m going to give you the tools to make this almost as easy as discussing any other important issue. 

Some context: 80 percent of people say that, if seriously ill, they would want to talk to their doctor about end-of-life care, yet only 7 percent report having had that talk. And 82 percent say it’s important to put their wishes in writing, yet only 23 percent have done it.

In other words, if you’ve avoided this tough issue, you’re definitely not alone. The key, says Ellen Goodman, co-founder of The Conversation Project (www.theconversationproject.org), is simply talking about it. And the best place to begin is at your kitchen table—not an intensive care unit—with people you love, before it’s too late.

Why is this important? Imagine, for a moment, being seriously injured or ill, unable to speak for yourself, or facing the end of your life. Whom do you want standing at your bedside, speaking for you, making tough decisions about your care—perhaps even disagreeing with other family members or medical professionals about how you should be treated? Now that you have that person in mind, does he or she know how you feel? Does that person know what’s important to you?

Or maybe you’re in a position to make these decisions for someone else. In that case, do you know his or her wishes?

The Conversation Project offers a “starter kit”—available online and as a downloadable file—with a list of questions to first ask yourself to be sure you understand your own feelings on the issue. The questions are simple but thought-provoking. Some are scaled (e.g., “How involved do you want your loved ones to be?”) while others are fill-in-the-blank (“What matters to me at the end of my life is ____”)

Once you’ve completed the preparation, you have to talk with someone, share what you think and how you feel, and ensure that your wishes will be adhered to in the midst of a challenging, emotionally charged situation.

Starting this conversation will be the most difficult step. (I’ve found that it’s tough writing about it, even in an abstract sense.) But having this conversation can be liberating for you both. It will give you the peace of mind that someone will be prepared to make your wishes known, and you will have the information you need to reciprocate.

The Starter Kit equips you to have this conversation with all the important people in your life and prepares each of you for the acceptance necessary to make it work. Following the conversation, the kit provides some valuable next steps: documents you should have on hand, further clarifying questions to deal with specific cases, and more.

If you’re still on the fence about whether this is important, consider one more item: 70 percent of people would prefer to die in their homes. The reality is the exact opposite: 70 percent die in a hospital, nursing home or long-term-care facility. 

Wherever you are on the spectrum, whatever your wishes for your own care, however you’d like to be treated, make your wishes known. The Conversation Project can help you do just that.•

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Cota is president and co-founder of Rare Bird Inc., a marketing communications firm specializing in Internet application development. His column appears monthly. He can be reached at jim@rarebirdinc.com.

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