About half of those with cancer face a religious struggle; a patient, chaplain and grieving mom reveal how cancer reshaped their views
September 28, 2016 • By Bill Briggs / Fred Hutch News Service
Dr. Stephen King, manager of the spiritual care and chaplaincy program at Seattle Cancer Care Alliance, in the SCCA sanctuary. Photo by Robert Hood / Fred Hutch News Service
Nestled in a wheelchair, Juan Perez wore a red blanket and a serene expression. He was nearing the famous sanctuary in Lourdes, France — the place, many faithful believe, where spontaneous cures happen.
“I was thinking,” he said, “of a miracle.”
Perez has synovial sarcoma, a soft-tissue malignancy that began near his heart. He’s undergone surgery, chemo, radiation, and immunotherapy at Seattle Cancer Care Alliance (SCCA), clinical partner of Fred Hutchinson Cancer Research Center. With standard treatment, most patients with that disease survive 12 to 16 months.
Perez was 21 months beyond his diagnosis when he arrived in Lourdes last spring. There, he and his wife, Susan, bathed in a grotto spring that many believers associate with dozens of healings. They sipped the spring’s cool water. And they prayed with other pilgrims.
Juan and Susan Perez at the Lourdes, France grotto. Courtesy of Susan Perez
“We gathered, 25,000 people in one church,” said Perez, 67, a devout Catholic. “It was all sick people, people with cancer, but all with one purpose.”
Five months later, after spending much of July too sick to work, he’s returned to his normal schedule, plunking ballads for listeners at iconic public venues throughout the Seattle.
The tumors in his body have shrunk, said Dr. Seth Pollack, his SCCA oncologist and a clinical researcher at Fred Hutch. Perez is no longer using the wheelchair. His prayers, he said, were answered. But not the way you might think, as you'll read later.
Rethinking belief
Science is based on hard facts and reproducible trials. But there’s also a growing body of work examining the role that something immeasurable — faith — can play for some patients. In a recent study of 8,000 cancer survivors, more than two-thirds agreed with the statement: “My faith or spirituality has helped me through my cancer experience.”
At SCCA, where Perez receives an immunotherapy drug, four staff chaplains representing a wide range of beliefs are available for patients who seek their services. Other patients may be referred by staff or via “distress questionnaires” that look for religious/spiritual/existential distress, depression, and other quality-of-life concerns.
“We see if they are open to talking about issues with us. Sometimes yes, sometimes no,” said Dr. Stephen King, manager of the SCCA chaplaincy program. “We meet with any patient of any belief system, whether it’s questioning, skeptical, atheist, devout, believer, whatever — one human being caring for another."
Patients may be facing a crisis of faith — or, at least, fresh dents in lifelong beliefs — caused by a diagnosis, treatment or prognosis. This anxiety even has a scientific name: “R/S struggle,” short for “religious or spiritual.”
And R/S struggles have been linked to heath declines. Among cancer patients, they’re associated with increased distress, poorer life quality, greater pain, longer hospitalizations and longer recoveries, according to previous research cited in a 2015 study, co-authored by King, examining R/S struggle in bone marrow transplant survivors. In a separate study of older, ill men and women, those who experienced a sickness-caused religious struggle appeared to have an increased risk of death compared to patients who didn’t have the same inner tension.
About half of cancer patients grapple with faith questions, other studies have shown.
“That’s one area we target — those who feel unloved, abandoned, punished by or angry at (the divine), or who struggle with meaning or have doubts,” King said of himself and his fellow SCCA chaplains. Some patients, he added, have expressed sentiments like: “I trusted God that bad things wouldn’t happen to me and bad things are certainly happening.”
But King understands what it means to have faith shaped — and re-shaped — by life. The week he turned 2 years old, his father died of lymphoma. When he was 37, his mother died of leukemia.
It’s not something he often shares with people, he said, but “it informs the work that I do and the values that I have for it.”
“The idea that if you believe a certain way, bad things won’t happen to you — or that if you pray a certain way, certain (good) things will happen to you — given my history, those are not beliefs that work for me,” King said. “My beliefs are not necessarily like what I was raised in. Some of that has come from trying to make sense of my life experience.”
‘Spiritual, not religious’
Cancer also can influence the faith of family members who abruptly find themselves in the fight with loved ones.
Before her son, Matthew, became ill with brain cancer at age 9, Nikki Austin regularly attended her Methodist church in Eastern Washington. Her beliefs, she said, used to fit into “a nice, pretty box.” She trusted that God would watch over her family, that life would always be good.
“Then Matthew gets diagnosed and everything I believed got turned upside down. I don’t accept those ideas anymore. It caused me to question all sorts of things. I will never just blindly follow again,” Austin said. “Now, my faith is all over the place. I still believe in God. But it’s messy.”
When Matthew was sick, she prayed. While some friends and family told her they were praying for a miracle, Austin asked God for a long stretch of symptom-free days for her son, good times for her family and, in the end, minimal suffering for Matthew. She felt she got those things. Matthew died in November 2013. He was 11.
“But I can think of other families whose kids were diagnosed, who didn’t get good time, who suffered immensely. What do you say about those families? How do you reconcile God with those families? Was God not there for them? That’s where it gets hard for me and I don’t feel like there are answers,” Austin said. “For me, it just doesn’t fit into a nice box anymore.”
Today, she describes herself as “spiritual, not religious.” She still prays. And she hangs onto a belief that prayer can have some therapeutic effect on people with cancer. She saw that benefit in Matthew, she said, when they talked of heaven and about seeing his late Grandma Mabel or Jake, the family dog who had recently died.
“That gave him comfort. One of the things with kids is that unknown — what happens when you die? For us to be able to answer some of that helped him. It gave him more of a peace about what was going to happen,” Austin said. “It helped his anxiety.”
Of course, there’s a distinction between a person in pain relaxing amid a whisper of heavenly thoughts and the expectation that prayers may spark physical rejuvenation.
A Harvard study of 1,800 hospitalized patients found no difference in recoveries among the patients who were told strangers were praying for their health and those who were informed that no intercessory prayers were coming their way.
“I have concerns about studies like this, especially about the methods of the study, the limited understanding of prayer, and the burden some patients and families might experience if there were a positive study outcome,” King said. “Although I believe prayer can make a difference in a number of ways, I have also witnessed people being traumatized by expecting or demanding that their prayers for cure be answered and then not experiencing a cure.”
A revelation at Lourdes
But for Juan, whose health has improved in the months since he traveled with his wife to Lourdes, one prayer was answered, he said.
When he first arrived in the small French town long associated with the Virgin Mary and medical cures for ill pilgrims, he was thinking about a miracle, he said.
“While I was there, I just can’t explain in the right words. It’s an unbelievable experience. The choir singing. Everybody rejoicing. So peaceful. When I was there, I just felt that I’d rather have a spiritual healing than a physical healing, to know God better. It helped me,” Perez said.
“The cancer I have has shrunk. I’m not thinking about a miracle. But I am thankful to God, whatever it is. And I’m ready to accept whatever he gives me.”
VIDEO GOES HERE: https://youtu.be/BfHxlNB1JHM
Juan Perez has entertained listeners throughout the Seattle area for years. Watch more of his story here. Video by Robert Hood / Fred Hutch News Service
Has faith been part of your cancer experience? Tell us on Facebook.
Bill Briggs is a former Fred Hutch News Service staff writer. Follow him at @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post, part of the newspaper's team that earned the Pulitzer Prize for coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: an Ordinary Man, a medical Mystery, and a Trial of Faith."
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