Hospice Volunteer’s Personal Experiences Lead to Special Role With Organization

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Two years ago, Diana Santilli and her husband of nearly 30 years faced the most difficult decision of their life together — whether or not Walter Santilli should enter hospice care.

The Santillis were familiar with hospice but — like many people — connected it with the end of life. Although Diana was often on the phone with a physician’s office seeking advice about her husband’s pain and discomfort, neither she nor Walter was prepared to take the hospice step.

“We had known about hospice and felt we were intelligent about the process and accepted the notion of hospice,” Santilli says. “But when it came to the actual decision, it was an agonizing one.”

Today, Diana Santilli is a patient family volunteer with FirstHealth Hospice & Palliative Care. She is also the organization’s first volunteer advocate, a role that allows her to educate patients and families, and even physicians and other health-care personnel, about all hospice services.

The goal is to increase awareness of the comfort/palliative care that hospice provides and how it can dramatically impact the quality of life for families facing a life-limiting diagnosis. Hopefully, this will make decision-making on whether and when to involve hospice easier for patients and their loved ones.

“In this new role, Diana is available to talk with patients and families considering admission about the benefits of hospice from her personal experience,” says Susanne Tyndall Martínez, volunteer services coordinator for FirstHealth Hospice & Palliative Care. “Having received hospice support while her husband was sick, she understands what a difference hospice can make and wants others to experience the difference.”

The Santillis moved to Pinehurst from Chapel Hill in 2000 after an earlier relocation from their longtime home in Northern Virginia. Both were enjoying life and golf when Walter was diagnosed with stage IV prostate cancer.

Because the disease had metastasized to his bones, he was often in pain. His quality of life, which included the golf game that he enjoyed so much, was suffering, too.

The couple struggled with the hospice option before deciding that it was the right thing to do, but they never had occasion to doubt the wisdom of their decision afterward.

“Within a couple of weeks, after the nurses had adjusted his medications, he was feeling good and looking good,” Santilli says about her husband’s hospice care. “He was back playing golf. In retrospect, we both said, ‘Why didn’t we do this sooner?’”

Santilli now uses the experience of one particular “magical month” that hospice intervention gave her and her husband when she conveys her message to prospective hospice patients and families. She hopes that it will help allay some of their fears and concerns, the same ones she experienced two years ago.

“If we can get this going,” Santilli says of the volunteer advocate program, “it just might give peace of mind to families. I passionately believe an earlier hospice intervention may be the greatest gift we can give them.”

Brenda Bouser works in the corporate communications office of FirstHealth of the Carolinas.

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