Spiritual leaders learn to help congregants through cancer at UCLA conference
Religious and spiritual leaders help their congregants through many of life's most difficult moments — death, divorce, lost jobs, crises of faith. But what is the right thing to do when one of their own has been diagnosed with cancer?
To help find answers to this question, more than 35 Los Angeles–area religious and spiritual leaders came together recently to learn from UCLA professionals — psychologists, a chaplain, an oncologist and an oncology social worker — about how they can help those diagnosed with this devastating illness, and their families, get through treatment and beyond.
The conference, "Spirituality and Medicine — Toward an Integrative Approach," was co-sponsored by the Simms/Mann–UCLA Center for Integrative Oncology at UCLA's Jonsson Comprehensive Cancer Center and the Simms/Mann Institute for Education and Community Development. It was the first conference of its kind at UCLA, with a focus on how to integrate the science of medicine with spirituality to soothe the heart and soul.
"Physicians focus on disease and medicine, vitally important in cancer treatment, but cancer affects more than just the body," said Anne Coscarelli, a psychologist and founding director of the Simms/Mann Center, who addressed conference participants. "It is a disease that changes most parts of a person's life — the mind, body and soul of an individual. Medicine alone is not enough. We need to integrate medical science with what we have learned about optimizing psychological well-being, including spirituality, to heal patients with cancer and their families."
Dr. Herbert Eradat, a survivor of acute lymphocytic leukemia, shared his perspective as an oncologist. He provided the religious and spiritual leaders a "Cancer 101" lecture on basic terms and their definitions, cancer staging, and the most common treatments available today. Cancer, he told them, "in its simplest term, is a parasite growing wildly inside the body, seeking to spread to other organs." That parasite also can gnaw away at patient's emotions, fears and dreams for a normal life, he added.
"Spirituality in oncology is not a new concept," Eradat said. "An article in the Journal of Clinical Oncology reported that as many as 88 percent of patients report that spirituality is at least somewhat important and is frequently extremely important. We in medical oncology are starting to recognize the value of spiritual care provided along with conventional treatments — not just surviving the cancer but also about what it takes to really heal."
Eradat said it is important for oncologists to assess the spiritual needs of a patient, along with their organ function. He also advised the gathered leaders about what they should advise their congregants to ask their doctors. The most important questions are:
- What type of cancer is this?
- What is the stage of the cancer?
- What are the best treatments, and how soon do we need to treat this cancer?
- What are the side effects of treatment?
- What are the goals of treatment — curative or long-term stabilization of the cancer?
- What can you give for symptom management?
Patients and their families often are left reeling after a cancer diagnosis and aren't thinking about what the questions they should be asking. Helping them to inform themselves would be a valuable service, Eradat said.
Calling himself a religious person, Eradat said tending to his spiritual needs helped him endure and survive his cancer diagnosis. "Cancer tends to be one of the cruelest diseases, and we usually cannot tell a patient why they have it," he said. "Cancer is one of the most anxiety-inducing words a patient can hear, so anything that can be done to reduce that anxiety would be very helpful."
Eradat said patients often ask oncologists to work together with their religious and spiritual leaders to let them know what issues may arise and need to be addressed.
Coscarelli said that the literature suggests that those with more social support do better during their diagnosis and treatment of cancer, so providing support in many different forms — medical, religious, spiritual — is key
Michael Eselun, an interfaith chaplain at the Simms/Mann Center, shared his experiences in addressing the spiritual challenges faced by cancer patients and their families.
"Many patients identify themselves as spiritual but not religious, so it's important to ask them what breathes life into their life. God, a higher power, a dog, their family, surfing or whatever it is — a place where they feel a connection to a larger sense of meaning," Eselun said. "Cancer can really mess with that. I see the role of a chaplain as one who walks beside the patient through their journey, just to be 'with' them and to extend compassion. The patient is the teacher in this situation, and I am the student."
Allowing the patients to be the teachers empowers them, and knowing that they are not alone on this journey becomes a soothing balm to a sore spirit, he said. A cancer diagnosis can also allow doubt to creep into the picture. Religious individuals may question why their God has done this to them. Secular patients may come to believe that there has to be more to this life than they believed.
"Doubt is a disquieting visitor," Eselun said. "Grace in the cancer journey is vital."
Eselun also shared stories of patients he has counseled with spiritual crises, like Myra, a woman in her 30s with leukemia. Myra had been raised a Catholic but didn't go to church. After she got cancer, Myra felt that maybe she should begin praying. But she felt there was only so much grace to go around and that she had not earned it.
Phyllis, also a leukemia patient, wondered if she had offended God in some way and that the leukemia was the result of that offense. But her cancer was curable, so really what she got was just a slap on the wrist from God. Did God have favorites, and if so, did this mean she was one?
With a cancer diagnosis also comes a disturbance in life roles, goals and expectations, Coscarelli said. Young cancer patients often have more stress and anxiety. It's important, she said, to take each individual separately and consider their unique needs. And she cautioned that even when treatment ends, the cancer experience continues. In fact, in many cases, that's when patients really start to begin "dealing" with the psychological impact of their disease.
"For these patients, the medical aspects of cancer have been in the foreground," Coscarelli said. "After treatment ends, it begins to move to the background. Many patients can go from coping very well during treatment to experiencing episodes of acute anxiety and fear. Having multiple strategies to deal with the stresses — building resilience and creating a positive world for themselves — and having the flexibility to move between the strategies when necessary can help patients and their families to cope effectively, leading to greater healing and reduced suffering."
With psychological and spiritual care, cancer patients can come out the other side feeling that they are stronger, more self-assured, and better able to face challenges — often with a greater purpose and meaning.
Attendees said the conference provided them with valuable tools that will help them help those they lead.
The Rev. Lynn Cheyney of the Westwood Presbyterian Church said that "diagnosis cancer" is an all too common event in the life of any congregation.
"As pastors, we are regularly called upon to walk the dark night of the soul with our congregants through the journey of cancer, but we often perceive the medical community to be disinterested in the intersection of body and soul," she said. "The bridge that the Simms/Mann Center is building between the medical world and the faith community will allow for far better care for the whole person."
Rabbi Ed Feinstein of Valley Beth Shalom in Encino said that "cancer infects more than the body; it metastasizes to the spirit, threatening the patient's identity, hopes and sense of purpose.
"The spirituality conference opened a conversation on how clergy might work with physicians, chaplains and therapists to heal the spirit and restore life and strength to souls threatened by despair and darkness," he said.
Matt Ball, president of the Church of Jesus Christ of Latter-Day Saints–San Fernando Valley, said he found the conference to be "very informative, thought-provoking and ultimately inspired."
"I think one of the bold dilemmas that came from the presentations and subsequent discussion was the paradox patients often face when coming to cancer with spiritual certainty, but who eventually find themselves devastated with the randomness of mortality," Ball said. "Finding the right words, the best tools to help one cope with the death that is playing chicken with their cope-ability, is an ongoing discovery."
The Simms/Mann–UCLA Center for Integrative Oncology is located on the Westwood campus of UCLA in the 200 Medical Plaza building. The center offers a unique model of care for patients and families touched by cancer that incorporates psychosocial and spiritual care in conjunction with the best of UCLA's anti-cancer therapies, as well as many resources and programs for patients and families. For more information, visit www.SimmsMannCenter.ucla.edu or call 310-794-6644.