'The Conversation Project' Shifts to End-of-Life Care

Aug. 15, 2012— -- After her mother died in May 2012, magazine publisher Nadine Epstein and her son traveled to Deal, N.J., to have a conversation with her father about his end-of-life care.

Epstein, 55, and some of her family members disagreed on what their mother would have wanted at the time of her death, mostly because they each had a different impression of her wishes. Epstein wanted to have a different experience with her dad.

"It wasn't always easy not knowing exactly what mom wanted, especially throughout her last days," said Epstein, publisher of Washington, D.C.-based Moment magazine."There were definitely disagreements among the children, about what she wanted ...

"As a group we all figured it out as best we could. But I would say we muddled through it. It would have been lovely not to have muddled through it, and I would love not to muddle through it in the future."

"The Conversation Project," in partnership with ABC News, is starting a national conversation with the modern U.S. family about what each of us wants toward the end of our years. "The Conversation" on ABC's "World News with Diane Sawyer" is about preparing family members for an emotional journey beyond end-of-life directives and insurance policies. It's estate planning for the soul.

Esptein's father, Seymour, a 91-year-old physicist, agreed to speak with his daughter and grandson Noah Phillips, 20, but had a different outlook on what would happen in his final days.

He was clear that he wanted his children to decide what they wanted to do in regards to his care and passing, down to the details of his funeral.

"I said that before, all that's unimportant to me," he said. "I remarked if they can use my organs, my body for someone else's benefit, that's fine with me."

The elder Epstein said he planned to focus on living, and not on the details of his final days. "I want to take the burden off you," he said. "I'll do what I can."

His daughter and grandson then had their own conversation about what they want for each other later on in life.

"So it's going to happen in a long, long, long, long time, and we're going to be totally different people by then," Phillips said to his mother. "But I guess the main thing I want to know is, do you trust me to kind of know you well enough to know what you'd want?"

"I do," she said. "I know I haven't given this a lot of thought. I've given a lot of thought for you know, Mr. Bronson, I've given a lot of thought for my mom, I'm giving it and will give it a lot of thought and I've thought about it for grandpa, but I haven't really thought all those things through. But I do trust you."

After thinking about how to move forward, it hit Epstein: She wanted to stay alive for as long as she can take in all the life around her, and the pair came up with the "Harry Potter" gauge.

"Here's the thing. If I can continue to read 'Harry Potter,' or be read 'Harry Potter,' by you or my grandchildren, and your wife, and I could continue to listen to 'Harry Potter' on tape, and then the 'Lord of the Rings,' and I can read all sorts of great fantasy novels, then you need to keep me alive," she said. "But if I'm at the point where I no longer can absorb 'Harry Potter,' then maybe you need to pull the plug."

Phillips gave input into what he wants for his mother down the road, too.

"So what I would like for you, is I would like for you in this hypothetical distant future... I have a family and I have a whole community and, hopefully, that community has lots of overlap with your community already, and that kind of thing," he said. "I would like for you to, basically, continue being a part, living with us."

"Sounds great to me," Epstein said.

After sorting a few things out, Epstein told her son that she is incredibly blessed. "I feel like you're such a wonderful person and you have a really good sense of me, and we actually have a lot of shared values, and so I actually don't worry about that at all," she said.

"Well, I've been raised with, I think, really good values that are really about taking care of people, and sort of generosity, and that kind of thing," Phillips said.

"Hopefully, you'll be that same lovely, wonderful person later on," Epstein said.

"Maybe I'll have a lobotomy," Phillips joked.

"No, you can't have a lobotomy," his mother said. "No lobotomies allowed."

"OK, I'll put that in my advanced directive," he joked. "No lobotomies."