Scientists are making progress in developing new cancer treatments, but a patient’s experience with cancer is shaped by more than medicine. A new sociological study has found that conflicting medical, work, and family timelines compound inequality, draining resources and displacing goals for even the most advantaged patients. These findings were published by Li et al in the American Sociological Review.
The report’s authors question how patients with terminal cancer grapple with their disease, treatment, responsibilities, and the health-care system. Drawing on 5 years of fieldwork in 9 cancer clinics and 196 in-depth interviews with 96 patients who were navigating a terminal cancer diagnosis toward the end of life, they then used multiple correspondence analysis to examine this ethnographic data and identify emerging patterns.
The authors found that patients experienced a “temporal misalignment,” in which their disease progression, work and family expectations, and hospital schedules did not match up. Lead author Zhuofan Li, PhD, an Assistant Professor in the Department of Sociology at Virginia Tech, noted, “Health-care inequality is often framed as a problem of who has resources and who does not. But for many patients making life and death decisions, time is the first thing that comes to their mind.”
The researchers also described how patients used their resources, such as time, money, and support. Patients applied their resources to juggling conflicting schedules between treatment, work, family, and paperwork. As they managed their schedules, patients dealt with the fact that their disease might be moving faster or slower than the health-care system could respond, and had to make tough decisions in the present while trying to plan for an uncertain future.
Through the prism of temporal misalignment, the authors sought to answer how unequal resources affect a patient’s experience. They found that trying to manage these time mismatches not only keeps existing inequalities in place, but also creates new challenges, noting that even the most advantaged patients had their resources drained and their goals displaced as the disease progressed.
The authors assert that their research provides valuable insights into how resources, institutions, and culture operate and intertwine to shape inequality in health care and beyond.
“In our intricate and highly marketized health-care system, the burden of coordinating scheduling, billing, insurance coverage, and clinical trials increasingly falls on the patients and their families whose time, energy, and body are already being depleted,” Dr. Li said. “A deeper sociological understanding of how people manage temporal misalignment in their relationships with health-care institutions and over the course of a disease is instrumental to effective health-care policy that not only provides resources but also takes patients’ struggles with time into consideration.”
DISCLOSURE: For full disclosures of the study authors, visit journals.sagepub.com.
