By Marina Dundjerski
Illustration by Mercedes McDonald
Three years ago, Ann Donato was diagnosed with congestive heart failure. The mitral valve that controls the flow of blood between the left atrium and left ventricle of her heart was leaking badly, and she felt like she was “drowning from the inside out.” An implanted cardioverter-defibrilator and surgery to repair the valve didn’t help. She vividly remembers the night when doctors at the local hospital where she was being treated came to her room to tell her there was nothing more they could do for her. A nurse stayed with her all night, through tears and prayers. “I lay in the room at night wondering what would become of me,” Donato recalls. “I was scared and I needed answers.”
She was discharged the next day, but, as sick as she was, Donato did not give up. She reached deep within herself to draw on a faith rooted in her Catholic upbringing to stay strong in the face of new challenges while pursuing other options.
“Faith is very important to me,” says Donato, a 56-year-old mixed-media artist. “God, prayer and hope are the key to what gives me my strength and belief to stay focused on what I face daily — and what is in the positive future. It is what keeps me knowing that it is worth all the fight and that I will see myself as a happy, healthy human being once again.”
Without her spiritual belief, Donato says, she would have had less fight in her; she might have given up. Instead, Donato believes it was her faith that propelled her to find her way to UCLA, where doctors implanted a lifesaving left-ventricular-assist deviceand where, in September 2012, she received a heart transplant. Donato recalls waking up after her transplant and seeing a doctor smiling at her. With everything that she had been through during the past two years — the search for answers to her condition, the struggle to cut through the red tape of public insurance, the multitude of tests and medical procedures — smiles like this had been rare. “My spirit had been torn down,” Donato says. “Seeing this doctor smiling at me gave me an immediate feeling of empowerment and strength.”
That smile belonged to Mario C. Deng, MD, medical director of UCLA’s Advanced Heart Failure, Mechanical Circulatory Support and Heart Transplant Program. Dr. Deng and Donato formed an immediate bond. “Dr. Deng reassured me that he was with me and somehow I could reach in and get that spirit that I had lost and build back everything that I had lived for,” Donato says. “I knew I was going to be all right.”
Artist and heart-transplant patient Ann Donato included hospital ID bracelets and other medical items to create “Queen of Hearts,” a collage that she says expresses how her spiritual faith blended with modern medicine to give her the strength to survive. Photo: Ann Johansson
Dr. Deng is clearly a man of science, but he also believes strongly that a compassionate and trusting relationship between physician and patient — one that supports both the physical and spiritual needs of the patient as he or she makes often-difficult choices about his or her medical care — is essential to healing. He and his wife, Federica Raia, PhD, an assistant professor of education and information studies at UCLA, explored this concept, which they term Relational Medicine Theory, in their research together into patient-physician relationships.
In practice, Dr. Deng says, Relational Medicine Theory advances a model of medicine that integrates science, technology and humanism within a single framework. “It is a mindful act of kindness, delivered from one human being to another, not from a white coat to a patient,” he explains. Physicians can help their patients to recover by encouraging them to draw from their spiritual well. “When we go through a crisis in our life, why is it almost universal to say, ‘Oh, God, please help me?’” he asks. “It’s not that we are members of a specific church and we are calling upon a specific god. It is a concept of spirituality that ties into the overall aspect of medicine and healing.”
More and more, faith is being introduced into physician training as medicine’s focus shifts toward more holistic treatment of patients. Some schools offer separate courses on spirituality, while others, including the David Geffen School of Medicine at UCLA, weave the topic into related coursework. UCLA’s Doctoring 1 class, for example, which is required for all first-year medical students, includes a segment on conducting a patient-centric interview that takes into account spiritual issues. Students also follow chaplains on their rounds in the hospital.
“One of the important aspects that chaplain rounds emphasize is to put the students in a position to have empathy — not just to address a patient’s symptoms but to also ask, ‘How are you doing? How are you coping?’” says Lacey Wyatt, MD, associate clinical professor of family medicine and chair of Doctoring 1. “People draw strength from different support systems, and faith is one of them.”
And faith doesn’t necessarily mean belief in an organized religion, notes Margaret Stuber, MD (RES ’82, FEL ’84), professor of psychiatry and director of the doctoring curriculum. It can be a patient’s sense that everything is going to work out, or that someone — particularly one’s doctor — cares about you. It can mean having faith in the treatment, belief that an individual affliction or disease is curable. Or, it can mean that whatever happens, things are going to be OK. “That sense of confidence and faith is definitely healing; it is the opposite of anxiety or worry or cynicism,” Dr. Stuber says. “I often wish I could just prescribe faith to people.”
As a part of its mandate, Doctoring 1 teaches physicians-in-training to consider spirituality and religious issues as an element of their initial patient assessment. Are there concerns that need to be discussed with a representative of the patient’s faith? Might a person’s religious belief have an impact on treatment considerations? “One of the things that clinicians have to do is become comfortable with, and open to, hearing the beliefs and attitudes of the patient and working with them without feeling they need to argue with them or change them in some way,” Dr. Stuber says.
While students today may be taught to consider issues of faith when speaking with patients, the idea that a patient’s spiritual framework might play an active role in his or her healing is not universally accepted. “There’s still a good deal of resistance within mainstream medicine,” notes Harold G. Koenig, MD, director of the Center for Spirituality, Theology and Health at Duke University Medical Center, in Durham, North Carolina. Dr. Koenig, a professor of psychiatry and behavioral sciences, has been studying the connection between faith and healing since the 1980s. He acknowledges that “research in this area is not as clear cut as one would hope,” but he says there are “good studies” that show that people who draw upon a spiritual context when they are ill tend to cope better than those who don’t. “I wish we could get doctors to be more open in talking about these issues,” Dr. Koenig says. “But many simply don’t believe it is their role to bring these things up. They prefer to keep that part separate from the medical care they deliver. I think, perhaps, it is possible for there to be more of a balance here.”
UCLA has offered spritiual care since 1960, when several concerned medical staff privately funded the service to pay for a chaplain’s salary. In 1974, the position became an official staff position; today, UCLA’s Department of Spiritual Care includes seven staff chaplains and five resident chaplains.
“In today’s model, the chaplains see themselves as integrated members of the care team,” says the Rev. Timothy Thorstenson, DMin, who manages spiritual care at UCLA Medical Center, Santa Monica. “People respond well when they feel like their emotional self is cared for as they go through a hospitalization. We primarily focus on empowering people to adapt to their circumstances, make meaning out of their experiences by integrating their values and beliefs, and to draw on their faith to face an uncertain future with hope and courage.”
Adds Chaplain Chitra Rao, who attends to the hematology and oncology unit at Ronald Reagan UCLA Medical Center, “I see my role as a spiritual companion, listening to those questions and not necessarily having the answers. Often from these reflections, patients and families are able to access their faith to find peace in not knowing. In their encounter with the limits of medicine, they often sense in a deeper way that faith is indeed about journeying into the unknown.”
"By exploring their own spirituality, (patients) come to terms with the fact that no one is responsible for what is happening to them,"says Edith O'Neil-Page, a palliative-care clinical nurse specialist. Photo: Liz O.Baylen/Copyright © 2010. Los Angeles Times. Reprinted with permission.
Sometimes patients are not even aware of their own spiritual needs until they are confronted with the stress of an illness, says Edith O’Neil-Page, a palliative-care clinical nurse specialist. “By exploring their own spirituality, they come to terms with the fact that no one is responsible for what is happening to them,” O’Neil-Page says. “That’s a very important part of dealing with illness and recovering from illness.” O’Neil-Page tries to facilitate that process whenever possible by sitting with the patient and listening. Other times, she will draw upon the resources of physicians, social workers or chaplains. “The spirituality and spiritual assessment of our patients and their families is an intrinsic part of what we do for patients. That is the core of nursing,” she says. “It’s the combination of putting the physiological disease process together with all of the aspects of human need, including spirituality.”
Kim Kronfeld, 62, was diagnosed three years ago with a marginal zone lymphoma in her left tear duct. Kronfeld, a resident of Florida, spent months going from one doctor to another until she received her initial diagnosis. Then she was also diagnosed with dermatomyositis, an uncommon inflammatory disease that causes muscle weakness and a distinctive skin rash. After much research, she found a specialist at UCLA, and now she travels every few months to Los Angeles for treatments for the dermatomyositis. (Her lymphoma is in remission.) During that time, she often talks with the nurses or meets with Chaplain Rao. “It’s easy to get into the, ‘Poor me, poor me, I have this chronic illness that’s never going away,’” Kronfeld says. “But knowing Chitra has been absolutely one of the most wonderful things. She has really been instrumental in helping me through some things.”
Kronfeld, who describes herself as spiritual but not religious, says that she believes one needs faith in order to take risks and succeed. “I see faith in terms of being on a boat during a dark night somewhere on the Long Island Sound. It is totally dark and suddenly the moon comes up and you feel better,” she says. “But you also feel better when the GPS and radar are working. So faith for me is both the moon and the radar. I don’t think faith is unrealistic; I believe that you can’t have healing without it.”
Marina Dundjerski is a freelance writer in Los Angeles and the author of UCLA: The First Century (Third Millennium Publishing Ltd., 2012).