Sandra Reed’s Life Care Planning: Start the conversation about end-of-life choices now rather than later

Attorney Sandra W. Reed answers your life planning questions.

Attorney Sandra W. Reed 

Ellen Goodman has been a hero of mine for a long time. Her 1974 column for the Boston Globe was of the first op-ed pieces by a woman newsperson, although male journalists had voiced their opinions in newsprint since the profession began.

Goodman won a Pulitzer Prize for her commentaries in 1980; she is the author of seven books. But her latest project touches a chord with me, less as a feminist than as a lawyer who specializes in Life Care Planning.

The Conversation Project

Goodman is the co-founder and director of The Conversation Project. The project developed after Goodman was forced to make decisions for her mother’s last years in a fog of bewilderment and uncertainty, having no idea what her mother would have wanted.  The problem wasn’t that Goodman and her mother were estranged. Quite the contrary. According to Goodman, they talked about everything — everything except how her mother wanted to live the end of her life.

Goodman apparently had the proper powers of attorney my column preaches everyone should have. Since she had the authority to act on her mother’s behalf; at least resolutions reached weren’t left up to strangers. What she didn’t have and wanted desperately was to hear her mother’s voice in her ear telling her what decisions she preferred. “If only we had talked about it,” Goodman says.

The Choice: “Good Death” Versus “Bad Death”

In 2010, the columnist and a number of colleagues, concerned media, clergy and medical professionals got together to share their stories about “good deaths” and “bad deaths” within their own circles. The Conversation Project evolved out of these meetings. At first it was a grassroots public campaign whose goal was to make it easier for people to have the conversation about dying. In September 2011, the project expanded into collaboration with a not-for-profit entity, the Institute for Healthcare Improvement, or IHI.

Currently, the organization includes five law, journalism and media professionals who worked without compensation along with the IHI staff.  The project’s website provides both the opportunity to read the stories of those engaged in the project and to share your own.

Goodman was determined not to leave her own loved ones guessing about her end-of-life wishes. And she didn’t want strangers to suffer the same experience she’d had with her mother. In its purpose statement, the Conversation Project expresses the belief that people need to shift from not talking about dying to talking about it around the kitchen table rather than in the intensive care unit.

To help people approach this most difficult conversation, the project has produced a “starter kit” that can be downloaded and printed from the project’s website theconversationproject.org.

At Step 1, the starter kit gives some compelling facts to stress the importance of completing the kit and having “The Conversation.” A 2012 survey by the California Healthcare Foundation found 60 percent of those surveyed said it was “extremely important” their families not have to make tough end-of-life decisions, and 56 percent had not communicated their wishes. Although 82 percent answered it was important to put their wishes in writing, only 23 percent had actually done so.

A 2005 Centers of Disease Control study reports that 70 percent of those surveyed said they prefer to die at home. However, the reality is that 70 percent of deaths occur in a hospital, nursing home or long-term care facility.

The Conversation Goes Viral

Prominent media personalities not associated with The Conversation Project in any direct way are taking the message of talking about dying public.  In November 2012, the Time Magazine cover story was journalist Joe Klein’s “How to Die: What I Learned from the Last Days of Mom and Dad.” The outgrowth of this article was a flurry of talk-show, social media and editorial discussion about the type of care people want for themselves and their loved ones.

In July this past year, Scott Simon, the host of NPR’s “Weekend Edition,” used Twitter to communicate from his mother’s bedside the last week of her life. The story went viral online. More than a million people followed his tweets. Both local and national media outlets covered it. Clearly, the impact of all this public discussion is a changing of how we approach death.

A Dinner Party to Talk About Death

The Conversation Project has paired with the organizers of “Let’s Have Dinner and Talk About Death” to encourage people to schedule a dinner party to talk about death during the time period of Jan. 1 through Jan. 7.  The idea is an expansion of an ongoing project of a group called “Engage With Grace,” which has, over the past few years, encouraged families to talk about death wishes over the Thanksgiving dinner table. “Let’s Have Dinner and Talk About Death” even suggests including friends, family and even strangers in the conversation.

Those interested in hosting their own dinners can go to the website, deathoverdinner.org, and choose options that help with the planning. Suggestions include wording for the invitations, conversation prompts and encouragement to share the experience on Facebook and Twitter.

The website also contains a series of brief readings, videos and audio recordings, including options from a chapter from Charlotte’s Web to a commencement speech given by the late Steve Jobs, that can be used to stimulate the conversation.

Now Is the Time: Today Is the Day

Make the conversation about death happen now, not later. Make it happen not only with aging parents. The conversation should be a reciprocal one. The fact of death is certain; the timing of it is not. Don’t wait until it is too late. I’m planning my Let’s Have Dinner and Talk About Death Party right now. Are you?

Sandra W. Reed is an attorney practicing in Glen Rose. She is of counsel with the Elder Law firm of Katten & Benson in Fort Worth.  If you have any questions, you may contact her by phone at 254-797-0211 or by email at swreed2@yahoo.com

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