Katherine Piderman has a voice that encourages conversation. It is gentle and gracious, receptive and reassuring. After listening to Piderman talk, your reaction to learning that she has spent the past 18 years providing bedside ministry as a staff chaplain at the Mayo Clinic in Rochester, Minn., is likely to be “of course.”
As you might expect, Piderman is often called upon to pray with cancer patients and their family members or perform religious rituals. But she also spends time walking the hospital’s halls and visiting outpatient clinics, looking for those she might be able to assist.
There is nothing novel about clergy members providing solace. What is new is the growing recognition of the need to acknowledge and address cancer patients’ spiritual needs. Research on spirituality in cancer, especially at the end of life, is burgeoning. (Type “spirituality and cancer” into PubMed, an online database of medical journals, and you’ll find more than 1,000 research articles.) A 2010 survey of U.S. medical school deans found that 90 percent of the respondents’ programs included classes that addressed the spiritual needs of patients. And at some cancer centers, chaplains are considered part of the treatment team, providing spiritual care to patients and caregivers of all cultures and faiths.
Spirituality and Quality of Life
The research on cancer and spirituality has been buoyed by efforts to move quality of life from the fringes of cancer care into the mainstream. When “we focus on a quality-of-life model of care,” says Betty Ferrell, an oncology nurse and research scientist at the City of Hope National Medical Center in Duarte, Calif., “everything that we do involves thinking about the whole person.” This includes not only the physical and psychosocial well-being of cancer patients and their caregivers, she says, but their spiritual health, too.
“When I was new in oncology,” says Ferrell, who has worked in the field for 25 years, “spirituality had a limited definition. We would only think of it in terms of religion. We would ask patients if they were religious or part of a church community, and you’d note if they were Catholic, Jewish, Buddhist or Protestant or not religious at all—and that is where it ended.” Now, she says, “we’ve come to understand that spirituality is a broad concept. For some people, there is a religious aspect to their spirituality. But we think of all people as spiritual beings who are seeking meaning and purpose.” And for people facing an often life-threatening illness like cancer, she notes, it’s common for questions about meaning and purpose to come to the fore.
The Rev. Stephen King, the manager of chaplaincy care at the Seattle Cancer Care Alliance, helps patients and their loved ones as they wrestle with these types of questions. Some cancer patients, says King, may experience a crisis in faith, whereas others may find that a cancer diagnosis leads to a new or renewed interest in religious or spiritual practices. And for still others, cancer may affirm their decision to have followed a more agnostic path. This religious questioning, he says, can lead to strain among family members. It can also cause internal struggles that result in feelings of shame, guilt or moral distress, especially when people feel abandoned by God. “This struggle and conflict can be a source of spiritual pain” that has a negative impact on quality of life, King says.
Learn More About Spirituality and Cancer Care
This type of spiritual pain is more common than people may realize. King and his colleagues presented preliminary study results at the 2013 American Society of Clinical Oncology annual meeting showing that 28 percent of the more than 1,500 blood and bone marrow transplant patients they surveyed, including many cancer patients, reported experiencing a spiritual or religious struggle. Spirituality may play an even larger role for people with advanced cancer. A study led by Michael Balboni—a theologian and social scientist at the Dana-Farber Cancer Institute in Boston—published last year in the Journal of Clinical Oncology, found that most of the patients with advanced cancer he and his colleagues had interviewed said spiritual care played an important role in their cancer experience.
Even those who don’t think they need spiritual care may still be struggling spiritually. Balboni says his research shows that when you ask patients follow-up questions, those who say spiritual care isn’t important also frequently say they are feeling anger at God or punished by God or wondering why this is happening to them.
Why Me, God?
These were the sort of feelings and questions that whirled through Candace Henley’s head 11 years ago, when she was diagnosed with stage IIB colorectal cancer. Unbearable pain had brought the 35-year-old single mother of five to an emergency room near her home in Chicago. The last thing on her mind was colorectal cancer. But before she could fully grasp what was happening, she was admitted to the hospital and, the next day, surgeons removed 95 percent of her colon.
As she went into surgery, Henley says, she recalled a verse from Genesis 50:20: “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives” (New International Version). In the years that ensued, she says she would rely on this verse time and again as “everything fell apart. I lost my house and my car. We were homeless and I was still fighting cancer. … I would cry every day and ask God why am I being punished. And there was no answer.”
Henley says she recalls being asked to speak to a chaplain following her surgery, but she turned down the offer. “I didn’t want to speak to anyone,” she says. “I couldn’t talk without crying. I was emotional. I was a wreck. I was depressed. People would tell me this was my path, and I was like, ‘Seriously, can’t God use me in any other way but this?’ ”
Spiritual distress—which might include anger, fear, loss of hope and a questioning of one’s belief system—can play a role in a patient’s treatment decisions and diminish quality of life. In 2012, the Commission on Cancer (CoC), which establishes standards for quality of care in U.S. health care institutions, mandated that by 2015 all cancer care institutions looking for accreditation by the commission must incorporate screening for psychosocial distress, including spiritual distress, as part of routine care.
According to the CoC, more than 70 percent of all newly diagnosed cancer patients are treated in the more than 1,500 CoC–accredited cancer programs nationwide. Efforts are now underway to determine the best screening tool for spiritual distress, says the Rev. Stephen King, the manager of chaplaincy care at the Seattle Cancer Care Alliance.
Henley’s spiritual crisis was directly tied to her religion. But a person doesn’t have to be religious to have a spiritual experience, says Jason Mann, who, after 30 years as a practicing oncologist, decided to become a chaplain.
“When I go to see a patient,” says Mann, who lives in Portland, Ore., “I will say, ‘What do you believe in?’ It could be family, it could be artwork, it could be beauty. All of those are manifestations of that person’s spirituality.” A spiritual experience can occur when a person is practicing religion, Mann says, but it can happen outside of religion, too. “A spiritual experience can happen at any time when you are moved.”
Reflecting on this difference, Piderman says of her work as a chaplain: “We provide religious care, prayer, anointing and other rituals. But our work is dealing with meaning, worry, anxiety and anger—within the context of spirituality. Our role is to help people connect to what has been meaningful in the past, what has given them hope in the past, and what can help them feel hopeful today.”
Piderman recalls a cancer patient she saw some years ago. “The first time I saw her,” says Piderman, “she told me she was not religious. When I went to see her a second time, she was in bed and said she felt wrinkled. I straightened her bedclothes and asked if that was better. She said, ‘No.’ Then I asked if she wanted a drink. She said, ‘Yes.’ Again, I asked if she felt better. And she said, ‘No—the wrinkles are on the inside.’ ” Then, Piderman continues, “she spoke to me about a spiritual struggle related to guilt. And after that, this nonreligious person asked me to sing
Amazing Grace. She told me that gave her peace.” Shortly thereafter, says Piderman, the woman died.
For other patients, religion can be at the heart of their spiritual crisis. Pamela Randall, the chaplain of Winship Cancer Institute of Emory University in Atlanta, has spent time with many such patients. One woman, she says, “was a teacher. She had been very independent and she was also a woman of faith. She talked to me a lot about how much she loved her job and her church and how she was feeling separate from God” because her cancer diagnosis kept her from doing the work she loved. Over the next two and a half years, Randall says, as she and the patient continued to meet and talk, she saw her “[begin] to get that connection back.” During that time she was living with cancer, she also “suffered many losses, and we would talk about that and how to hold on to God” during such difficult times.
Integrating Spiritual Care
To meet cancer patients’ spiritual needs, chaplains are educating both current health care providers and medical school students about how to attend to this aspect of a person’s quality of life. “There may be 300 patients and three chaplains,” says Ferrell. “So, in the training we do with health care providers, we reinforce that if the only people who are getting good spiritual care are those seen by chaplains, most patients are going to have their needs ignored. … Chaplains are the spiritual experts, and it is important that they are available when patients have spiritual distress or a specific need for a religious leader. But everyone—nurses, social workers, doctors—can attend to spirituality.”
Getting medical professionals to feel comfortable in this role, however, is “fraught with challenges,” says Balboni. “One of the key issues as we move forward is designing evidence-based educational training in spirituality for doctors and other health professionals so that they feel more comfortable engaging with patients.”
Balboni and his colleagues’ research suggests that about 50 to 70 percent of doctors and nurses say they are spiritual or identify with some religion. But because spirituality is often not viewed as part of medical care, he says, health care providers may feel it’s inappropriate to bring it up with patients.
Randall says that because of the work she and her department have done to educate their colleagues at the Winship Cancer Institute about how to address patients’ spiritual needs, new doctors there are now more likely to bring up issues related to spirituality with patients and their families before the chaplain becomes involved. “We speak to doctors during their orientation at the hospital about their role and how they can support patients and family members,” she says. “We teach them that faith and spirituality can be a key component of caring for a patient and that we can help them provide that care.”
When Henley, now 47, was at one of her lowest points after completing her colorectal cancer treatment, she found spiritual strength by volunteering for the Chicago affiliate of the Colon Cancer Alliance, a Washington, D.C.–based nonprofit organization. “I was suffering on all accounts,” Henley says, “so I decided to start helping others. The more I volunteered and the more I did, the more I received.”
Today Henley’s life bears little resemblance to how it looked following her cancer diagnosis. Her new job is stable, her daughters are happy, and she not only has a home but two grandchildren. And, she says, she finally has peace. “I now see what God wanted me to see. … My message is one of hope and having faith.”
When Chaplain Piderman was diagnosed with an early stage breast cancer in October 2013, she had 18 years of “well-ingrained” spiritual practices to rely upon. Even so, she says she didn’t hesitate to seek out another chaplain to speak with. And like Henley, she found the spiritual in those around her. “One of my most spiritual practices was praying for other people who were sitting in the waiting room with me and for the people who were treating me. … Every day I drew the name of someone from our department and prayed for them during my treatment. It got my mind off myself, and I felt like I had some company in that treatment room.”
Piderman found support in her medical team as well. “My surgeon … prayed with me before she operated and she covered me with a warm blanket. She provided spiritual care through that kindness. … Spirituality is a human response.”
June 27, 2014