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.
Courtesy of Becky Brooks
Courtney Strain, shown with her husband, Brock, died of brain cancer in June 2010 at the age of 25. In the months before she died, she said she sometimes felt like an outcast. People didn't know what to say to her, so they said nothing at all.
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."
One of the things Courtney Strain left behind was this simple guide for the family and friends of people who are dying. Here are some of the things she wanted people to know:
Hallmark doesn't fix it all. ... Write a letter or send an email. ... [Talk to me when] I'm strong enough to sit and laugh or cry with you ...
Don't pretend that everything is going to be OK.
Don't abandon me at my most vulnerable time. ... Sit and pray with me. Don't just pray for me.
Don't treat me like a child — even a well-loved child. ... Include me in decisions that affect our family or social group ...
Instead of asking, "What can I do for you?" offer some concrete suggestions — like bringing a meal or treat, or running errands ...
Respect my decisions about my health care — my doctors, my medications and my treatments — and about my end-of-life plans ...
Just because I'm dying doesn't mean I'm any less capable of being your friend. Dying isn't my whole identity.
Credit: "What You Can Do When A Friend (Like Me) Faces The End Of Life," BJC Palliative Home Care and Hospice
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.