Ethnographic Study: Listening Deeply to What Patients Have to Say About the End of Life

Originally posted on November 10,  2014

New research published by the California HealthCare Foundation—in collaboration with Point Forward and the Coalition for Compassionate Care of California—illustrates how culture frames end-of-life choices for patients and families.

Learn more, and download the report.

Health care providers who work with patients toward the end of life are sometimes surprised by the ways patients and their families approach care decisions. Wishes for care can appear unconnected to the facts of the patient’s condition and often change over time.

This research—based on in-depth interviews with families—examines the process of learning and decisionmaking that people often experience as they or their loved ones approach the end of life. It juxtaposes those processes with the medical framework generally used by health care providers. The aim is for genuine, shared decisionmaking that results in effective, patient-centered care.

During the research, three insights emerged that may be useful to providers as they work with patients and families:
  • During the end-of-life experience, both patients and families undergo emotional learning. This process requires time for people to notice, react to, and come to terms with their powerful feelings.
  • Folk knowledge of care wishes already exist. The research found that people have informal, but deeply significant, ideas about the end of life, including values about health care, how to evaluate care scenarios, the sanctity of life, and the disposition of one’s body after death.
  • Cultures vary subtly but fundamentally compared to the mainstream framework for decisionmaking. As one example, the report looks at in-depth interviews with Chinese American patients and families and how their cultural approach affects the health care decisions they make.
For each of these research findings, the authors discuss ways that health care providers can work effectively with patients and families as they go through these experiences.

Learn more, and download the report.