Suzanne Doyle sits quietly thumbing through a stack of books and photo albums she helped create. She's a middle-aged woman with a soft spoken demeanor. Doyle is the founder of Lumina, a program at BJC Hospice that helps patients leave statements that go beyond a simple good-bye. Her eyes begin to moisten as she recalls a recent patient, Courtney Strain, who died of brain cancer last summer at the age of 25. In the months before Strain died, she met weekly with Doyle where she revealed one constant frustration. Strain said she felt like an outcast, that people didn't know what to say to her, so they said nothing at all.
"So, I said, you know Courtney, that you could be a teacher," said Doyle. "You know what people, not just your age, but all dying people need. And I wonder if we can't come up with some kind of teaching tool."
The teaching tool they completed together is a simple guide called "What You Can Do When a Friend (like me) Faces the End of Life." And it's Courtney Strain's statement on how to treat the dying. Becky Brooks, Strain's mother, says Lumina gave her daughter a voice at the end of her young life.
"You really need someone outside the scope of family and friends to help you and to be a sounding board," Brooks, said wiping away tears. "And for you to say the things that aren't so nice to hear. That was really empowering for her."
Experts say honoring someone's life and legacy has always been part of the hospice philosophy. There are 25 volunteers with the Lumina program and most are not trained medical personnel. Instead, they're storytellers who learn how to interview dying people so they can help them leave tangible statements of legacy: books, CDs, photo albums, letters.
Volunteer Susan Kissinger says it's difficult and emotional work. She helped a middle-aged ALS patient write a series of letters for his wife and kids before he died. But Kissinger says it's a gift to be let into hospice patients' lives.
"There will be times when the emotions will rise up," she said. "And I guess that's just a gift that I have to offer, I can just be present here and except the gift without being overwhelmed."
As expected, volunteers often form deep bonds with hospice patients. Connie McIntyre met with 84-year-old Adell Durant once a week for about eight months. Durant grew up in Mississippi. Her sister died at a young age and Durant lost all contact with her nieces and nephews, which was a great source of sadness for her. So, Connie McIntyre got in touch with the local paper in Durant's home town and it ran a photograph of Durant's lost family.
"Within days she started getting phone calls from various people who knew the family and who were sharing information, and then eventually from family members, " said McIntyre. "She reconnected, which was one of her highest joys in her last months."
From Summer to Fall of 2009, Adell Durant was able to talk and visit with her new found family. In her final recording dated November 12, 2009 she expressed her gratitude to Connie McIntyre.
"My life would not have been what it is now if it hadn't been for her because she brought my family together, " Durant said in the recording. "With me praying and she calling the company and getting the pictures in the paper. Because I didn't really know how to do it by myself. That's what you call a friend."
Adell Durant died on December 1, 2009. Her recordings were given to her family as a legacy to be shared with future generations.