Doctoral Dissertation Research: The Co-Construction of End-Of-Life Care

University Of Wisconsin-Madison, Madison WI

Investigators

Abstract

Given the potential for misunderstanding and even for misguided care, there is a need for more research on how terminally ill patients, their family members, and their doctors mutually discuss and plan for death. This project examines the ways death and dying are discussed (or avoided) in clinical visits among terminally-ill lung cancer patients, their oncologists, and family members (caregivers). The study uses ethnographic observation, analysis of recorded conversations, and interviews, in the context of the illness histories of patients to make sense of how explicit discussions of death are structured and negotiated. Findings from this study will be useful for anyone concerned with end-of-life care, including medical policymakers, hospitals, medical professionals, families, and patients. This study examines how clinic visits are interactionally structured, in particular, how treatment decisions are made, and how participants (oncologists, cancer patients, and cancer patient caregivers) explicitly discuss end-of-life issues and death. Research is conducted using multiple methods, specifically, two years participant observation at a cancer clinic, conversation analysis of the physician-patient-caregiver conversations during these observations, and semi-structured interviews with oncologists, patients and caregivers. The research and results will engage theories of death and dying and of doctor-patient relationships in an era of new technologies and therapies and emphasis on patient-centered care. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.