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Sat April 9, 2011
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For Dying People, A Chance To Shape Their Legacy

Imagine that you've just been told you have only a short time to live. What would you want your family and community to remember most about you? In St. Louis, a hospice program called Lumina helps patients leave statements that go beyond a simple goodbye.

Suzanne Doyle, the founder of Lumina at BJC Hospice, sits quietly thumbing through a stack of books and photo albums she helped create.

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. In those meetings, Strain revealed one constant frustration: feeling like an outcast. People didn't know what to say to her, she told Doyle, so they said nothing at all.

"I said, 'You know, I'm thinking, Courtney, that you can be a teacher,' " Doyle says. " '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 they called "What You Can Do When a Friend (Like Me) Faces the End of Life." Strain's mother, Becky Brooks, 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, and for you to say the things that sometimes aren't so nice to hear," she says. "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 values and 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 to 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 emotion will rise up," Kissinger says. "And I guess that's just a gift I have to offer: I can just be present here and accept 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 McIntyre got in touch with the local paper in Durant's hometown, 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," McIntyre recalls. "And she reconnected, which was one of the highest joys of her last months."

Between the summer and fall of 2009, Durant was able to talk and visit with her newfound family. In her final Lumina recording, dated Nov. 12, 2009, she expressed her gratitude to McIntyre.

"My life would not have been what it is now if it hadn't been for her," Durant said in that recording, "because she brought my family together, with me praying and she calling the company, 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."

Durant died on Dec. 1, 2009. Her recordings were given to her family as a legacy to be shared with future generations.

Transcript

SCOTT SIMON, host:

Imagine youve just been told you have only a short time to live. What would you want your family and your community to remember most about you? In St. Louis, an unusual hospice program is giving dying patients a chance to define their legacy.

Julie Bierach, of St. Louis Public Radio, explains in this report.

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JULIE BIERACH: Suzanne Doyle sits quietly, thumbing through a stack of books and photo albums she helped create. Shes a middle-aged woman with a soft-spoken demeanor. Doyle is the founder of Lumina, a program at BJC Hospice here in St. Louis 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 didnt know what to say to her, so they said nothing at all.

Ms. SUZANNE DOYLE (Founder, BJC Hospice): I said, you know, I'm thinking, Courtney, that you can be a teacher. You know what people - not just your age, but all dying people - need. You can be a teacher. And I wonder if together, we could come up with some kind of teaching tool.

BIERACH: The teaching tool they completed together is a simple guide they called, "What You Can Do When a Friend (Like Me) Faces the End of Life." And its Courtney Strains statement on how to treat the dying.

Becky Brooks is Strains mother. She says Lumina gave her daughter a voice at the end of her young life.

Ms. BECKY BROOKS: You really need someone, outside the scope of family and friends, to help you and to be a sounding board. And for you to say the things that sometimes arent so nice to hear - that was very empowering for her.

BIERACH: Experts say honoring someones 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, theyre storytellers who learn how to interview dying people so they can help them leave tangible statements of values and 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 to his wife and kids before he died. But Kissinger says its a gift to be let into hospice patients' lives.

Ms. SUSAN KISSINGER (Volunteer, Lumina): There will be times when the emotion will rise up - and just breathing through it and letting it go. And that is, I guess, a gift that I have to offer - is that I can just be present there and accept the gift without being overwhelmed.

BIERACH: 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 Durants hometown, and it ran a photograph of Durants lost family.

Ms. CONNIE MCINTYRE (Volunteer, Lumina): 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. And she reconnected, which was one of the highest joys of her last months.

BIERACH: From summer to fall of 2009, Adell Durant was able to talk and visit with her newfound family. In her final recording - dated November 12, 2009 - she expressed her gratitude to Connie McIntyre.

Ms. ADELL DURANT: My life would not have been what it is now if it hadnt been for her because she brought my family together - with me praying, and she calling the company, getting the pictures in the paper, because I really didnt know how to do it by myself. Thats what you call a friend.

BIERACH: Adell Durant died on December 1st, 2009. Her recordings were given to her family as a legacy, to be shared with future generations.

For NPR News, Im Julie Bierach in St. Louis.

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SIMON: And one of the things Courtney Strain left behind is a simple guide for the family and friends of people who are dying. You can read some of the things that she wanted people to know, on our website, npr.org.

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SIMON: And this is WEEKEND EDITION from NPR News. I'm Scott Simon. Transcript provided by NPR, Copyright National Public Radio.