Hospice patients and families receive special support from Faithful Presence Program

No 'I love yous' left unsaid

For most people at the end of their lives, it's a comfort to know that their lives touched others and that some part of them will live on within the ones they love. With this in mind, Faith Hospice in Irving, TX, has created a Faithful Presence Program in which families can record on a professional-quality CD their thoughts and feelings about the person who is dying.

The hospice patient is presented a copy of the CD as a gift from the family, and the patient's family receives copies as a legacy.

"Our purpose is to help the dying person get closure on his life and find meaning in his life," says Don Weaver, PhD, a consultant with Faith Hospice and a psychologist in private practice in Addison, TX.

"But most of all, the purpose is to help patients deal with the crisis of terminal illness in a way that enriches them," Weaver says. "What we do is rely on the family to help accomplish that."

The CDs include the family's memories, presented as vignettes about the patient, illustrating the patient's character and life interests, Weaver says.

For example, one patient's granddaughter recounted how her Christmas days were the only days of the year when she didn't feel like the "little poor child" because her grandfather pretended to be Santa and made certain she had gifts under the tree.

Family members will comment on the patient's positive qualities and resources, Weaver says.

"We have them say directly, 'I love you' to the patient, and all of their comments are directed to the featured person, the dying person," Weaver says.

"Then we pull out the best of these remarks and put them on top of the featured person's favorite music, whether it's religious or secular," Weaver adds.

Sometimes the songs are sung by grandchildren or other family members.

Faith Hospice provides all patients with a CD player to have by the bedside, so patients can listen to their personal CDs, as well as to other music, while they are dying, says Carol Bourland, BS, manager of volunteer services for Faith Hospice.

The Faithful Presence Program is one of several programs the hospice provides to patients and families as part of their spiritual and emotional care, Bourland says.

The CDs have provided a great deal of comfort and solace to patients. Among the quotes the hospice has collected from patients are these:

  • "When night comes, and you settle down, and then it's just you and your thoughts, they're going to wander to those people that you've loved so much. And all you've got to do is just reach out and turn on your tape—and there they are, right there by your bedside."
  • "I go to sleep with my tape almost every night. Just to think I can reach out, and touch a button, and hear my children's voices or my grandchildren, or my friends… I can just hear their voices. It's a comfort to me."
  • "When I listen to that tape, I don't think about anything except what's on it. That's why I play it. Because I completely lose myself, and I just absorb it."

When the hospice made a CD for a patient who was nicknamed "Peewee," the staff brought the finished CD to his home, where he was surrounded by family, but had been unresponsive for a couple of days, Bourland recalls.

"He was restless, and we played the tape and saw him calming down," she says. "He tried to sing along with his favorite song of Amazing Grace."

Peewee had been a music director for a church in a small Texas town, and so music was very important to him, Bourland says.

"The family said, 'I believe the CD helped show him the way to heaven,'" she adds.

The idea of the Faithful Presence Program is to help patients and their families focus on the present and on the positives in their lives, while accepting the negatives from the past and future, Weaver and Bourland say.

"We knew this would be beneficial for hospice patients, but we didn't know what impact it would have on family members," Bourland notes. "We interviewed family members three months after the loved one's death, and the impact was incredible."

Family members said the CD helped them to have closure, and one woman said the CD helped her to teach her young daughter about death and dying, Bourland recalls.

"They played the CD at his funeral, and it brought them closer together as a family," Bourland adds.

Listening to a Faithful Presence CD might remind one of a National Public Radio feature segment. The voices are clear and the sound quality is sharp. The memories the family members relate can easily bring tears to eyes.

With two decades of experience in making the special CDs, Weaver has created an efficient model for their creation.

"The start-up cost is you have to have a good microphone and CD recorder and, hopefully, you'll have some gear that will delete noise from the initial recording, such as trucks outside or, especially if you're in a hospital, extraneous sounds," Weaver says.

The basic equipment could be purchased for under $1,000, but there also is a need for editing, and that takes both time and money.

"Hospices can partner with area universities and get it edited and mixed to music by students, who will receive independent credit for their programs," Weaver says. "I've been passionate about this for 20 years, and even in the dark times when the funding was not there, I'd do it for free."

Family members, from babies to elderly spouses, contribute to the CD. Those who can speak are asked to tell stories about the hospice patient that highlights his or her unique qualities and character, commenting specifically on the person's inspiring qualities. They are also asked to express their love and gratitude directly to the dying loved one, cutting to the chase of what's important here and now.

These stories are recorded directly to a CD, and then they are edited and placed on a finished CD, with music added to the background. The music is what the patient or the patient's family says is important to the patient.

The editing process is labor intensive, Weaver notes.

"We get the raw material on the hard drive and then go through it, and it's very systematic: we're looking for verbal content that falls into three categories of vignettes, positive qualities, and saying, 'I love you,'" Weaver says. "Everybody has to say, 'I love you,' or they don't get out of the room."

The editor will identify the first and last word of each segment that will be included on the finished CD, and then these are pulled by an audio technician to record on the finished CD.

"We identify the good segments and themes, and the technicians pull it together," Weaver says.

For example, a local television station has donated some editing time, Weaver adds.

"We take it to sound experts, who spend an hour and a half on it, and then it's a finished product," Bourland says.

"We are very persnickety about what gets on the final product," Weaver says. "We take the CD and pull out the nuggets, good segments, and arrange them on the person's favorite music."

The hospice does have to worry about using copyrighted material, but most artists when contacted will provide permission to use their music for free, since the CD is given as a gift to patients and families, Bourland says.

Families and patients who've received the CDs say they help them stop focusing on fear of the future, Weaver says.

"They focus on the positive contributions and experiences they've had in the past," Weaver explains. "It's a dramatic shift, and they tend to live more in the present and take each day as a gift, detaching themselves from negative memories."

Need More Information?

  • Carol Bourland, BS, Manager of Volunteer Services, Faith Hospice, 6100 Colwell Blvd., Suite 225, Irving, TX 75039-3112. Telephone: (972) 401-9090.
  • Don Weaver, PhD, Consultant/Psychologist, 3939 Beltline Road, Addison, TX 75001.