Activist: 'You Only Die Once, Die the Way You Want'

Dec. 12, 2013— -- "Talking about sex won't make you pregnant and talking about death won't kill you," says Alexandra Drane, the founder of Engage With Grace. She's on a mission to encourage families to have "The Conversation" about end-of-life wishes. She is part of a growing movement -- and for her it's personal.

When Alexandra Drane was just 32, her beloved sister-in-law, Rosaria "Za" Vandenberg, a vivacious 32-year-old wife and mother of a 2-year-old girl, was diagnosed with Stage 4 brain cancer.

The family had never spoken with her about her end-of-life wishes.

"We had no idea what she wanted because we never had the conversation with her about what her preferences would be, and we didn't because we never thought we would need to," said Drane.

While 70 percent of people say they would like to die at home, only 30 percent do, according to The Conversation Project. So crusaders such as Drane, an advocate for having a conversation about what our loved ones would want at the end of their lives and co-founder of the group Engage with Grace, are coming forward to share their own stories. They hope to make clear why it is so important for people to discuss their end-of-life options in advance with the people they love.

Just seven months after she was diagnosed, Za was clinging to life in a hospital bed, not having touched or held her daughter in two months, not opening her eyes in weeks. Drane and Za's other family members wanted to take her home, but the oncologists resisted.

"The head oncologist said, 'No, her case is too complicated,'" Drane said. "I said, 'OK,' and I will forever be grateful to my man, her brother, who stood at that moment and said, 'No, we are taking her home.' And so we did."

When Za was surrounded by the familiar comforts of her own home, her daughter Alessia -- who had been afraid to come near her mother in the midst of the hospital tubes -- climbed up in bed next to her.

"I will never forget, she tucked her head right there under the crook of her mommy's neck, that special spot, and she gave her mom her medicine -- something she hadn't done in well over two months," Drane said. "And Za, my sister-in-law who had not opened her eyes in at least a week, woke up fully and looked her daughter straight in the eyes and loved her in that ferociously intense way that only a mommy can."

The next day, Za died.

"The most incredible thing for me as more time has passed and I can look back on it and really think without dissolving is I'm so grateful that we got Za home ... because we know now when we look back that her last moments were peaceful, they were beautiful. They were with her daughter. That Alessia will know for the rest of her life that she was the last thing her mom saw. And we almost weren't able to give her that gift and that tortures me."

Drane co-founded Engage with Grace to help other families have conversations about end-of-life care before their loved ones get sick -- so they can avoid gut wrenching decisions that she and her family had to face when Za fell ill.

According to The Conversation Project, depression rates plummet among surviving family members when they're able to carry out the wishes of their loved ones who have died.

"This is a conversation that you can have with friends at a dinner table, you can have on a walk with a family member, you can go on a date with expressly this purpose," said Drane. "There is no greater gift you can give the people that you love than caring for them in the way that they would want at the end of their lives."

According to Drane, the holidays are a perfect opportunity to have the conversation.

"You only die once, die the way you want," Drane said. "You are never too young to have the conversation, and now is a good a moment as any other."