Lessons from Duke: Centering the Patient Experience & a Role for Theology

More Than Conquerers

Communication within cancer care is saturated with metaphors.

During her two third-years — the research years from Fall 2020-Spring 2022 — Bodd led a small qualitative study aimed at understanding the function, frequency, and impact of metaphors, particularly the war metaphor, on the patient experience, from cancer diagnosis through treatment and survivorship. ("More than conquerors": a qualitative analysis of war metaphors for patients with cancer, Supportive Care in Cancer, Dec. 2022)

“There is plenty of literature about war metaphors like "fighting cancer" in oncology, but there has been no rigorous qualitative analysis,” Bodd explained.

Her study was a place to start. The research team — drawn from DCI, Dana-Farber Cancer Institute/Harvard Medical School, Brigham and Women's Hospital, and Oregon Health and Science University — interviewed 15 patients with breast, lung, or colorectal cancer, at various stages of progression, using an interview guide developed with input from social workers and DCI patient navigators.

The DCI-site research was conducted under the auspices of the Duke Cancer Patient Experience Research Program, which is led by Duke Cancer Institute Chief Patient Experience and Safety Officer Thomas LeBlanc, MD, MA, MHS, a hematologic oncologist and palliative care physician. LeBlanc was the senior author of the paper.

When patients who used the war metaphor were asked, ‘Where did you first hear this metaphor, or when did it start to gain significance for you?’ respondents said they found it in the community, on the signs entering a cancer hospital (not Duke), or in their support groups, explained Bodd, and they tended to use the war metaphor in conjunction with another metaphor.

"Most patients used metaphor themes of journey, nature, war, or mystery to describe their cancer as a way to make meaning out of their diagnosis, possibly as a coping strategy,” the investigators reported. “All patients with non-metastatic disease used war metaphors and described how these metaphors facilitated meaning-making by promoting positivity and situating cancer within a larger life story. The few patients who did not use war metaphors had metastatic disease, and they explained that war metaphors were unhelpful due to feeling a lack of control over their metastatic disease and outcomes.”

Noted Bodd, “One patient with metastatic disease said, ‘I feel like my body with cancer is a battlefield, and the oncologists are the fighters.’” Imagining that their body was “caught in the crossfire,” observed Bodd, speaks to how the war metaphor “isn’t quite as useful” as it “doesn’t give patients agency” over the outcome.

Some included God in the equation.

“For example," she said, "one patient endorsed that ‘God can fight cancer and has fought cancer. So, cancer isn’t bigger than the God that I know that I serve.'"

The investigators concluded, “The war metaphor should remain an integral part of cancer care. Disregarding war metaphors robs patients of an important framework for meaning-making, one that may promote strength, continuity, and resilience in navigating cancer.”

These findings got some attention in clinical circles.

“Anyone familiar with cancer will attest to the association of war and battle metaphors in survivorship,” began an article on ‘Cancer and War Imagery’ in Cancer Nursing Today. “Having to ‘battle’ cancer or even ‘the battlefield’ are common colloquialisms peppered into the everyday vernacular surrounding cancer. Despite the frequency of usage, it remains unclear whether this terminology is helpful or harmful to patients with cancer.”

The article went on to cite a 2019 piece in The Guardian newspaper suggesting that war idioms might increase fatalistic views of cancer, then presented, as a counterpoint, Bodd’s study conclusions that the usage of war metaphors “could be helpful for some patients.”

Joshua Briscoe, MD, a hospice and palliative care physician at the Durham VA Medical Center and assistant professor of Psychiatry and Behavioral Sciences at Duke, engaged Bodd over Twitter about the study findings.

“Of all the metaphors, the war metaphor is the most rigid. It doesn’t permit the possibility of other outcomes beyond winning/losing. It flattens the moral landscape of healthcare,” he wrote. “Nearly all the patients I see have a limited life expectancy, so the war metaphor carries too much win/loss. I might have a different view if I saw more patients who were being cured.” (Read Briscoe's commentary piece on faith, living, dying, and cancer in Mere Orthodoxy for more of his insights.)

Though the study team did not interview clinicians, Bodd agrees that a study about how clinicians engage or don’t engage with the “cancer battle” would be worthwhile.

“From anecdotal experiences in talking to physicians, whether medical or surgical oncologists, some of them say they don’t follow their (the patient’s) lead about the war metaphor; i.e. if the patient uses it, they still don’t use it. There are some who use it if the patient introduces the metaphor into this space. And some physicians do introduce the metaphor themselves,” she said, noting that only one study participant said their doctor introduced the war metaphor.

Noted Briscoe, “It would be helpful to know how metaphors influence clinicians’ own practice… whether they view themselves as fellow warriors, companions on a journey, coaches, or mere scientists… I appreciate the authors’ work here because clinicians do need to be more mindful of how metaphors and language in general operate in the clinical encounter… We (as clinicians) need to listen, so we can respond appropriately.”

Heart of Medicine

Bodd has both read the literature and seen firsthand how community and caregiver support and “the power of positive thinking” can enhance survival for some patients. And she’s seen how a cancer diagnosis can strengthen one’s faith in a higher power or upend it.

Bodd took a class taught by Kate Bowler, PhD, an associate professor of American Religious Studies who specializes in the study of the prosperity gospel, “a creed that sees fortune as a blessing from God and misfortune as a mark of God’s disapproval.”

After being diagnosed in 2015 with stage 4 colon cancer, Bowler wrote a book in 2018 describing “her struggle to understand the personal and intellectual dimensions of the American belief that all tragedies are tests of character.” (Everything Happens for a Reason (and Other Lies I’ve Loved)) In a 2021 follow-up book No Cure For Being Human (and Other Truths I Need to Hear) Bowler continued to “grapple with her (cancer) diagnosis, her ambition, and her faith” as she tried “to come to terms with limitations in a culture that promises anything is possible.”

Bodd acknowledges that “for the majority of patients, it is really demoralizing when someone just tells you to think more positively,” especially when a part of your body “is actively dying.”

For many who take up the cancer battle, anything isn’t possible, and staying positive is a real struggle.

However, she also cautions against assuming that cancer patients’ “whole psychosocial experience isn’t critical to their survival or oncologic outcomes.” Doing so, she said, would be a loss.

Bodd’s “first patient” was Reid White, who was under the care of DCI GI oncologist Hope Uronis, MD, for stage 4 adenocarcinoma of the gastroesophageal junction. Diagnosed in June 2018, he has had no evidence of disease for 20 months. Though Bodd didn’t provide any direct medical care to him, she was paired with White a month into medical school as part of the Duke University School of Medicine GOCHATS clinical elective program, during which students learn more about and from older patients.

“Five years later he still remains one of my most significant teachers and friends,” Bodd shared. “I remember a conversation I had with him and his wife in 2019. He said, ‘There’s lots of living happening in the in-between.’ He taught me that a patient with cancer is far more than what we see within the walls of a cancer hospital – and wow, has it been strikingly beautiful to become a friend and ally to his family.”

“Monica was one of the brightest parts of my experience with the Duke Cancer Center,” wrote White in an email.

Also in 2019, she "processed (her) first patient death" — as a trainee under the clinical mentorship of Dan Rocke, MD, JD, an associate professor of Head and Neck Surgery and Communication Sciences.

“It might sound trivial, obvious, but Dr. Rocke showed me that surgeons can and should have emotions, letting themselves be moved by their patients’ lives," said Bodd. "Working with him was the first time I ever imagined myself becoming a surgeon.”

About Face

In her final year of Theological Studies and medical school, Bodd had the opportunity to co-lead another patient experience research-driven project — Evaluating Faith-Based Needs of Patients with Head and Neck Cancer (2022-2023) — this time with co-director of the DCI Head & Neck Cancer Disease Group Walter Lee, MD, MHS, and DCI head and neck cancer epidemiologist Nosayaba Osazuwa-Peters, BDS, PhD, MPH, CHES.

Supported by the Duke Office of Durham and Community Affairs, it was one of more than 55 Duke University Bass Connections projects selected for the 2022-23 academic year; projects that integrate research, education, and civic engagement; “bringing together faculty, postdocs, graduate students, and undergraduates to tackle complex societal challenges in interdisciplinary research teams.”

“Multiple head and neck cancer patients of mine have mentioned their faith as a source of hope — and this was the initial spark for this project,” said Bodd.

The incidence of head and neck cancers falls disproportionately on minority populations with differing survival outcomes based on race, gender, health insurance, marital status, and socioeconomic status.

Characterized by significant morbidity and mortality, these cancers place a physical, psychosocial, and financial burden on a patient’s life and require treatments that can leave patients permanently disfigured and disabled. In some cases, there can be an additional social stigma attached, due to the link, for example, between oropharyngeal cancers (tongue, soft palate, side and back walls of the throat, and tonsils) and the sexually transmitted human papillomavirus (HPV), and the association of squamous cell carcinomas of the oral cavity, oropharynx, hypopharynx, and larynx, with tobacco use.

The complexity of care issues in treating head and neck cancer patients requires cross-disciplinary brain power. Specializations amongst this 13-member Bass team of staff leaders, faculty, graduate students, and undergrads, included community engagement, occupational therapy, theological ethics, surgical palliative care, chaplaincy, church leadership, public policy studies, cultural anthropology, religious studies, and cancer biology.

The project focus was on helping to boost the social support necessary for head and neck cancer patients to counter the psychosocial burden of their diagnosis, treatment, and survivorship. Knowing that a large proportion (68.5%) of cancer patients lean on prayer for their well-being (J Altern Complement Med, 2008) and that spiritual-medical concordant care has been shown to improve quality-of-life near death, the team sought to learn from clergy and patients about the role faith-based communities play and could play in the well-being of head and neck cancer patients and survivors as well as any potential barriers.

Duke Cancer Institute and Duke Health have a long history of partnership with faith communities, which includes co-hosting health screenings, sharing educational materials on risk, prevention, and treatment, navigating patients to care, and more. (LEARN MORE: "A Matter of Faith: Duke Health Partners with A.M.E. Zion Pastors to Rebuild Trust in Health Care" by Robert J. Bliwise)

Bass project co-leader Osazuwa-Peters, an associate professor of Population Health Sciences and Head and Neck Surgery and Communication Sciences with a background in dentistry, contributed his expertise and understanding of the particular psychosocial challenges of these types of cancer, including the epidemiology of suicide among head and neck cancer survivors. About 40% of head and neck cancer patients experience depression, and the suicide risk is one of the highest across cancers. (LEARN MORE: "Improving Suicide Prevention Among Head and Neck Cancer Patients" by Angela Spivey for Magnify, Duke University School of Medicine)

Lee, a professor of Head and Neck Surgery and Communication Sciences and of Radiation Oncology, brought his strong belief in servant leadership and a virtue-based model of professional and personal development — embodying the core virtues/values of “initiative, integrity, compassion, personal responsibility, and accountability” —  to his role as co-leader. (LEARN MORE: Duke Otolaryngology Faculty Spotlight on Dr. Walter Lee)

“Dr. Lee has a uniquely team-based mindset,” reflected Bodd. “He taught me to place ourselves (head and neck surgeons) within a larger story of spiritual and psychosocial communities built for care of the patient. This carried over to our research together which was deeply collaborative across disciplines/institutions.”

Spiritual-Medical Concordant Care

The project team began by studying published research in disability studies, theology, head and neck surgery, epidemiology, and palliative care.

The patient-facing subteam sought to characterize the psychosocial effects of cancer on patients, patients' cancer care needs, and their faith-based needs. They developed a survey that built on the NCCN Distress Thermometer, the MDASI Head and Neck Cancer Module (a multi-symptom patient-reported outcome measure for clinical and research use), Satisfaction with Facial Appearance, Religious Support Scale, and the Duke University Religiosity Index. Then they proceeded with the study consent and interview process — 135 patients screened, 52 consents obtained, eight patient surveys completed as of April — and still ongoing.

Meanwhile, the clergy-facing subteam, led by graduate student Leslie Ballew, MDiv, interviewed local clergy (a) to understand the impact of face-related disabilities (e.g., disfigurement, sudden loss of voice or hearing, trauma, congenital deformities) on a congregant's access to religious services and other barriers to worship; (b) to identify gaps in care services (c) to understand existing community resources for these patients, and (d) to look at the possibilities of expanded care and involvement of clergy.

By the time the group made its first public presentation of the data — at the Fortin Foundation Bass Connections Showcase — they'd conducted and transcribed five interviews with local clergy from various congregations. They reported that the five conveyed a “need for proper training and health literacy to understand the needs of patients with head & neck cancer" and also expressed their "limitations" in terms of "time and resources" to minister to these patients (clergy burnout). The investigators also noted the respondents' "lack of awareness of their value beyond emotional and social support.”

The Bass team, many of whom continue to meet virtually, hopes to submit their first abstract, which will include recommendations for how to apply what they've learned, by the end of this year.

Bodd found a whole community of students, faculty, and clinicians studying and working in the arenas of theology or religious studies AND medicine or science within the Bass team, including Ballew, a chaplain resident at the Durham VA Medical Center and wedding director at Duke Chapel; Sarah Jean Barton OT, ThD, an assistant professor of Occupational Therapy and Theological Ethics (also Bodd's mentor in Theological Studies); Maia Kotelanski, an undergraduate researcher in DCI's Pendergast Lab with a double major in Biology and Religious Studies; Kimberly Monroe, MPA, program manager for Community Engagement at Duke Health and an ordained elder at Victorious Life Fellowship Church in Durham; and faculty contributor Buddy Marterre, MD, MDIV, a GI doctor and general surgeon at Wake Forest University School of Medicine with research expertise in spiritual suffering, grief/loss, coping, and the impact of surgical palliative care on patient outcomes.