For Holly G. Prigerson, PhD, Psychosocial Issues Are at the Heart of End-of-Life Cancer Care

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Holly G. Prigerson, PhD, Co-Director of the Weill Cornell Medicine’s Center for Research on End-of-Life Care, was born in Maimonides Hospital in Brooklyn, where her father had been a resident. Her family moved to Long Island, first living in Islip, where Dr. Prigerson’s father practiced medicine in a house office. The Prigersons then relocated to neighboring Bay Shore, a sleepy hamlet hugging the Island’s South Shore, where Dr. Prigerson attended public school.

“Bay Shore is home to the ferries that transport vacationers, and us locals, to Fire Island. My hometown is filled with beach lovers, myself included,” said Dr. Prigerson. “In light of my good grades, especially in chemistry, my father wondered why I didn’t want to become a doctor; it seemed like a natural professional choice to him. But I was more interested in the humanities, social sciences, and tennis.”

She continued: “I was very involved in sports and played on my high school’s varsity tennis, basketball, volleyball, and softball teams. Our tennis team was very strong, and we were county champs. I was also a member, very briefly, of a high school sorority and liked art and drawing cartoons for the school newspaper.”

A Big Decision Over Coffee

Finishing at the top of her class in high school, Dr. Prigerson was accepted in 1980 to her first-choice school, Barnard College, the “women’s college” of Columbia University, where she played on the university tennis team and majored in history. “I had wanted to become a professor of history, and that path required proficiency in a foreign language, so I studied Spanish and spent a semester abroad in Madrid. In 1984, I was accepted to Stanford University’s doctoral program in history, but after a year, I soon realized I wanted to do research that informed the care of people. So, after receiving my master’s degree in history, I moved to the sociology department and became a predoctoral National Institute of Aging trainee in its program on mental health and aging,” revealed Dr. Prigerson.

Much of end-of-life cancer care is the result of psychosocial phenomena and processes.
— Holly G. Prigerson, PhD

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She recalled having coffee one night at Stanford’s coffee house (the “Coho”) with her boyfriend and his advisor, well-known economist Tom MaCurdy, when the conversation turned to her doctoral dissertation. Dr. MaCurdy advised bluntly: “Prigerson, Medicare Hospice Benefit. Study that for your dissertation. There’s going to be a huge wave of old people soon, and this is going to be a big deal.”

Dr. Prigerson took his sage advice, and her dissertation focused on what was, at the time, a new entitlement—the Medicare Hospice Benefit. “I examined why older patients who indicated mostly wanting to die peacefully at home were increasingly dying in hospitals. I wanted to understand the factors that influenced whether patients used this benefit and did or did not enroll in hospice,” she explained.

Her study identified communication among patients, family members, and physicians as strongly influencing patients’ prognostic awareness (what she termed “terminal illness acknowledgment”), which strongly predicted whether patients enrolled in hospice or not. “My dissertation identified direct, ‘matter-of-fact’ clinical communication as the most effective way for patients to understand that they were dying; vague communication led to optimistic biases that undermined realistic prognostic understanding. Fast forward to our research today, and we are essentially building on the foundation laid in my Stanford doctoral dissertation,” she noted.

Mentor at Yale

After receiving her PhD in sociology from Stanford University, Dr. Prigerson held a postdoctoral fellowship in the epidemiology of aging at Yale University School of Medicine, where she also became Assistant and then Associate Professor of Psychiatry.

“My mentor at Yale was Dr. Stanislav Kasl. Stan was wickedly smart, funny, and had a clear vision of the strengths and weaknesses of psychosocial epidemiologic research,” revealed Dr. Prigerson. “He impressed upon me the importance of studying hard objective outcomes (such as cancer care) and the need to disentangle psychosocial influences on them. Social scientists typically focus on subjective outcomes (psychological states), and under Stan’s mentorship, I learned how to measure psychosocial constructs more precisely (psychometric analysis) but also the problems of “endogeneity,” particularly in the context of when subjective assessments influence other subjective assessments,” she said.

What oncologists say or don’t say and what patients and family members hear or don’t hear … largely determine how patients live out the remainder of their lives.
— Holly G. Prigerson, PhD

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Dr. Prigerson continued: “These insights were formative in the research that led to our psychometric validation of a new mental disorder, prolonged grief disorder, which is slated for inclusion in the International Classification of Diseases (ICD)-11. Stan provided invaluable critical input on what ultimately became my first National Institute of Mental Health (NIMH)-funded R01, the Yale Bereavement Study, which provided the bulk of the evidence supporting the inclusion of prolonged grief disorder in ICD-11 and the Diagnostic and Statistical Manual of Mental Disorders (DSM)-5’s Appendix.”

Dr. Kasl’s mentorship and advice guided Dr. -Prigerson’s approach to the planning and execution of her Coping with Cancer NIMH and the National Cancer Institute (NCI)-funded R01 prospective, longitudinal cohort studies of patients with advanced cancer and their family caregivers followed into bereavement. “Even today, when I am designing studies, I have internalized the voice of Stan Kasl advising me on what to do and not to do. He showed me a rigorous approach to what many consider soft sciences,” she added.

Research in End-of-Life Care

In 2004, Dr. Prigerson moved to Harvard University, where she went on to become a tenured Professor of Psychiatry, directed the Dana-Farber Cancer Institute Center for Psychosocial Oncology and Outcomes Research, and attained an honorary master’s degree. In 2013, Dr. Prigerson left Harvard University to take advantage of an opportunity in New York. “I have an endowed chair in Medicine, the Irving Sherwood Wright Professor of Geriatrics, and am currently Professor of Sociology in Medicine at Cornell and Co-Director of the Cornell Center for Research in End-of-Life Care, which included a multimillion-dollar startup fund.

“I currently am a recipient of NCI’s 7-year Outstanding Investigator Award (R35), which examines factors influencing end-of-life care of patients with cancer and the bereavement adjustment of their surviving family caregivers,” said Dr. Prigerson. Her research includes a recently funded NCI and American Cancer Society exploratory study EMPOWER in caregivers of ICU patients with cancer, and studies of Latino and African American vs white patients with cancer disparities in end-of-life quality of life and cancer care. “They are the focus of several NIH-funded R01s to identify targets of interventions to reduce racial/ethnic disparities and new studies to examine and compare advanced cancer care among immigrant vs U.S.-born patients. The overarching goal is to improve the quality of cancer care and quality of life for advanced cancer patients and family caregivers,” she revealed.

Dr. Prigerson noted the Center for Research on End-of-Life Care website has online assessment tools that provide a diagnosis of prolonged grief disorder to the respondent and makes recommendations regarding the need and potential benefit of treatment. “We are also in the process of developing the Finding Your Way website, which we are currently developing to promote bereavement adjustment of grieving family survivors of the deceased. This will be a free, open-access online tool based on research from an NIMH-funded grant to adapt cognitive behavioral approaches to address intense, dysfunctional grief,” she explained.

More Realistic Goals Needed

Asked for a final thought or two on the difficult issues oncologists face when curative options run out, Dr. Prigerson declared: “Much of end-of-life cancer care is the result of psychosocial phenomena and processes. What oncologists say or don’t say and what patients and family members hear or don’t hear, denial of grim realities and fears of death and dying, largely determine how patients live out the remainder of their lives.”

According to Dr. Prigerson, there is much to be learned from psychology and the social sciences to overcome the psychosocial challenges to better end-stage cancer care, to address fears, not just of death, but also of discrimination and burden on family members. “We need systematic study to determine how to communicate information about treatment options more effectively and use this shared understanding to promote value-consistent care,” she noted.

According to Dr. Prigerson, research, including studies that factor in influential psychosocial factors, is a powerful tool to generate the evidence patients and health-care providers need to make informed decisions about medical care as life draws to a close. “This requires a much deeper and wider evidence base than currently exists. It also highlights the need for validated approaches to communicating information about treatment outcomes more effectively, so patients and families can know what to expect and make decisions for how they want to live out their lives in a way with consistent with informed preferences,” she concluded.■

DISCLOSURE: Dr. Prigerson reported no conflicts of interest.