“The problem often is that we do not have a family spokesperson but a spokesgroup”: Family Member Informal Roles in End-of-Life Decision-Making in Adult ICUs
Background: To support the process of effective family decision-making, it is important to recognize and understand informal roles various family members may play in the end-of-life decision-making process.
Objective: The purpose of this study was to describe some informal roles consistently enacted by family members involved in the process of end-of-life decision-making in intensive care units (ICUs).
Methods: Ethnographic study. Data were collected via participant observation with field notes and semi-structured interviews on four ICUs in an academic health center in the mid-Atlantic United States from 2001 to 2004. The units studied were a medical ICU, a surgical ICU, a burn and trauma ICU, and a cardiovascular ICU.
Participants: Participants included health care clinicians, patients, and family members.
Results: Informal roles for family members consistently observed were:, Primary Caregiver, Primary Decision Maker, Family Spokesperson, Out-of-Towner, Patient Wishes Expert, Protector, Vulnerable Member, and Health Care Expert. The identified informal roles were part of family decision making processes, and each role was part of a potentially complicated family dynamic for end-of-life decision-making within the family system, and between the family and health care domains.
Conclusions: These informal roles reflect the diverse responses to demands for family decision making in what is usually a novel and stressful situation. Identification and description of these family member informal roles can assist clinicians to recognize and understand the functions of these roles in family decision making at the end-of-life, and guide development of strategies to support and facilitate increased effectiveness of family discussions and decision-making processes.