A devout 35-year-old Latina woman with two young children lies in the intensive-care unit (ICU) of a Boston-area hospital, dying from cancer. With no sign of improvement, the medical team advises withdrawing life support, but the woman’s husband refuses. The couple has been pushing for aggressive therapies, along with prayer support. Members of their Pentecostal church hold vigils at the woman’s bedside, praying that God will perform a miracle and cure her, but eventually she dies.
With most Americans placing a high value on faith, it’s no surprise that religious and spiritual beliefs can be a source of comfort, hope, and meaning during life’s most fraught moments, like those faced by this family.
“Illness is a spiritual experience for most patients with advanced disease,” says Tracy A. Balboni, associate professor of radiation oncology at Harvard Medical School (HMS) and a radiation oncologist and palliative-care physician at Dana-Farber/Brigham and Women’s Cancer Center. “Patients want to be seen as whole persons, not just as bodies affected by illness.” But doctors, she says, are often unprepared to connect body and soul. “As I went through medical training, I was given tools to manage the physical realities of disease, but barely any to recognize or engage the spiritual and existential aspects of illness. They were clearly considered separate, even though there were so many natural connections, particularly in the setting of incurable disease.”
For the past decade, Balboni has been conducting research to illuminate how spirituality affects the patient experience, especially at the end of life. That work, published in leading medical journals, is now a centerpiece of Harvard’s interfaculty Initiative on Health, Religion, and Spirituality. The effort, launched in 2013, aims to promote rigorous research, provide training for students and medical residents, and spark collaborations across and beyond the University at the intersection of religion, medicine, and public health. Although centered at HMS and the Harvard T.H. Chan School of Public Health (HSPH) and affiliated hospitals, it also involves chaplaincy leaders and faculty members from the Divinity School (HDS) and other Harvard schools.
“Many patients today are making decisions at least partly informed by their religious beliefs. We need to bring research to bear on understanding and describing what’s really going on,” says initiative co-leader Michael Balboni, a theologian, HMS instructor in psychiatry, and palliative-care researcher at Dana-Farber. (He is also Tracy’s husband and collaborator.)
Research led by initiative members, along with collaborators at Harvard and beyond, has already yielded insights on health outcomes, patient-clinician relations, and costs. For example, Tracy Balboni and her colleagues, drawing on the national Coping with Cancer Study, have found that terminally ill patients who receive spiritual support from their medical team are more likely to use hospice, seek less-aggressive treatments, and have better quality of life near its end.
On the other hand, outcomes are different when the spiritual support comes from patients’ own faith communities. In a 2013 study, Balboni and other investigators reported that patients with advanced cancer who are well supported by their religious communities choose hospice care less and aggressive medical measures more when they’re near death. Such patients “had six-times higher odds of dying in the ICU,” says Michael Balboni. (As described by initiative leaders, “spirituality” is a connection to something larger than oneself that gives life meaning, while “religion” refers to beliefs and practices shared by a community.)
To delve more deeply into these issues, the Balbonis surveyed physicians, nurses, and terminally ill cancer patients at four Boston teaching hospitals from 2006 to 2009. The resulting study, Religion and Spirituality in Cancer Care, revealed that most patients want spirituality to be part of their cancer care and—somewhat surprisingly to the researchers—most oncologists and nurses think it’s appropriate for clinicians to provide spiritual care, at least occasionally. That might include asking about a patient’s spiritual outlook, requesting a chaplain’s bedside visit, or even praying with patients.
But these interactions are not common, according to the Balbonis. In a 2013 paper published in the Journal of Clinical Oncology, they and colleagues in the Harvard medical community—many of them now part of the initiative—showed that most patients with advanced cancer had never received any form of spiritual care from their oncology nurses or physicians (87 percent and 94 percent, respectively). The investigators concluded that lack of training is the main barrier.
These findings could have financial consequences, given the high cost of intensive end-of-life treatments. One analysis conducted by initiative members and others at Dana-Farber, HMS, and HSPH, reported in the journal Cancer in 2011, suggested that if medical teams routinely provided spiritual care to dying cancer patients, the annual cost savings in the United States would total $1.4 billion (based on 2009 data).
Another focus of inquiry involves the health benefits of going to church or other religious services. A team led by initiative co-leader Tyler J. VanderWeele, a professor of epidemiology at HSPH, mined data from Harvard’s long-term Nurses’ Health Study and found that women who attended religious services more than once a week were 33 percent less likely to die, and lived an average five months longer, during a 16-year follow-up period (1996-2012) than women who never went. Frequent attendance, the investigators note, appears to increase social support, decrease depression, discourage smoking, and boost optimism.
The data also revealed an association between attending religious services and significantly lower rates of suicide. Among the 90,000 women in the study, those who regularly attended religious services were nearly six times less likely to commit suicide during the study follow-up years (1996 to 2010) than those who did not. (These findings appeared in the Journal of the American Medical Association’s JAMA Internal Medicine and JAMA Psychiatry last May and June, respectively.)
“The research suggests that there is something very powerful about the communal religious experience,” VanderWeele says. “Religious participation appears to be an important social determinant of health, and yet one that we have neglected in our discussions on the distribution of health outcomes.”
VanderWeele teaches a Wintersession course on religion and public health—one of the handful of curricular offerings on spirituality and medicine across the University; others include a few at HDS, an HMS elective on “Spirituality and Healing in Medicine,” and a required course in the Harvard Longwood Psychiatry Residency Training Program. Associate professor of psychiatry John R. Peteet, who co-teaches the medical school and residency courses, says it’s important for clinicians to understand the religious, spiritual, and cultural dimension of illness—and to recognize how their how their own spiritual beliefs, whether religious or secular, “can be an important resource for working well.” (Peteet has co-edited The Soul of Medicine: Spiritual Perspectives and Clinical Practice with associate professor of anesthesia Michael N. D’Ambra.)
Initiative leaders hope their work will eventually expose more students and providers to these topics and lead to better practice. They are pleased that the Joint Commission, a national healthcare accreditation organization, has begun to recognize the role of spiritual care. But, the Balbonis say, its guidelines are “ambiguous” and not yet enforceable because empirical research on spirituality and medicine is still new, and many knowledge gaps remain. They, along with VanderWeele and other colleagues, plan to continue tackling such unanswered research questions as: What role should doctors play in delivering spiritual care? How does witnessing their patients’ spiritual moments, like being at peace with God, affect clinicians themselves? Is religious attendance “healthful” for people of faiths beyond the mostly white Christian population surveyed in the Nurses’ Health Study?
Academic medicine, initiative leaders say, also seems to be more receptive now to addressing issues around spirituality in patient care. “Thirty or 40 years ago,” says Michael Balboni, “I don’t think people would even whisper about these things, certainly not publicly.” In 2015, the initiative hosted a national conference on medicine and religion that drew 300-plus attendees, and it convened a December 2016 symposium to highlight current research and implications for clinical practice. Adds Tracy Balboni, “It’s encouraging to see the growing recognition, at Harvard and other academic institutions, that these questions are important to a comprehensive understanding of what comprises health.”