Former Journalist Gives Voice to End-of-Life Discussion

by Susan Pasternak/The Medicare NewsGroup

After Nadine Epstein’s mother passed away, a process fraught with family disagreements about her mother’s end-of-life care and burial, Epstein stumbled upon The Conversation Project, a not-for-profit organization dedicated to helping people express their wishes regarding death.

“With my mother, we all muddled through it rather painfully,” Epstein said. “It was very unclear what (my mother’s) wishes were. I happened to run across The Conversation Project right after this, and realized it would be incredible to have this conversation with my dad.”

The Conversation Project, based in Cambridge, Mass., hopes that its efforts will foster a culture that encourages and accepts as the norm family conversations about death and dying. While 70 percent of people say that they want to die at home, that same number actually ends up dying in hospitals, nursing homes or long-term care facilities, in part because their wishes were not articulated to their family members, according to Ellen Goodman, co-founder and director of The Conversation Project.

Right now we “have a conspiracy of silence,” Goodman said. “The project is an engagement campaign that aims to have everyone’s end-of-life wishes expressed and respected.”

The Conversation Project began in 2010 when Goodman and a group of colleagues, clergy and media and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own personal circles. Understanding the need for a cultural change, they developed a plan to create the grassroots campaign using both traditional and new media.

In September 2011, the organization collaborated with the Institute for Healthcare Improvement, a not-for-profit organization that helps lead improvement of health and health care throughout the world.

Utilizing traditional media, social networking and engagements with select communities, workplaces and places of worship, The Conversation Project hopes to “enable and energize groups to spread the conversation,” Goodman said.

The Conversation Project offers a “starter kit” for those who seek a way to more comfortably engage family members or loved ones on the difficult subjects of death and dying. The starter kit asks the participants to self-reflect and answer questions such as “What matters to me is (fill in the blank)” and ranking on a scale of one to five the statement “I want to live as long as possible, no matter what.”

The kit then offers icebreakers for introducing the subject and specific talking points that should be addressed during the conversation. The talking points address such issues as the circumstances that the person considers worse than death (i.e., the need for a breathing machine or feeding tube) versus the kinds of aggressive treatments that are desirable.

Having conversations about end-of-life issues has “helped me to provide patients with better care because it helps me understand who they are as individuals,” said Jennifer Obel, M.D., a medical oncologist with Illinois-based NorthShore University HealthSystem and a member of a task force that has created a guidebook for clinicians when having discussions with patients about end-of-life wishes. “And it helps their family members understand what they want. Most family members want to do what the patient wants, but because we don’t talk about end of life, we’re left not knowing.”

While Epstein’s father, a vivacious 92-year-old who still drives and is physically active, said he wants to leave it up to his children to determine his care, Epstein did learn through her conversation with him that he would like to donate his organs to science. Epstein’s 20-year-old son was also present during the conversation, and came up with his own “Harry Potter gauge” for when his mother faces her end of life.

“I said if there ever comes a point where I no longer want to read Harry Potter, or Lord of the Rings, or other fantasy novels, or you’re reading them to me and I can no longer understand them, then it might be a time when you can consider pulling the plug,” Epstein said. “We also agreed to revisit the topic as I get closer to being an older woman.”

While many end-of-life conversations in the public and political space focus on cost of care, The Conversation Project is solely focused on empowering people to have the dying experience they want.

“We don’t care what people choose,” Goodman said. “We just want them to express their wishes. (People) generally do choose less aggressive treatment, and their survivors are less depressed. But we’re not saying what their wishes should be. We’re saying ‘let’s listen’.”