Abstract: Critically ill patients and families face end-of-life decisions everyday. Decisions are not made in isolation, but involve patients’ families and health care team members. To investigate how researchers studied patient and family end-of-life decision-making, we analyzed 37 published research reports from 1990 to present. Our research question for this integrative review was: What are the similarities and differences between end-of-life decision-making research conducted with children and older adults and their families? Summary findings were tabulated using frequency counts of investigator discipline, theoretical basis, setting, sample, and method. Disciplinary differences were noted for research method choice and use of a theoretical model. Adult findings were based on a total sample of 6499 as compared to 540 children and families. We conducted a thematic analysis of study findings yielding five themes: communication, decision-maker, beliefs, actions, and outcomes. We found compelling similarities in how families support the patient, protect their family, and manage within the health care system. Choosing life or death for a family member created extraordinary ambivalence for families with some distinct differences. The majority of children died in intensive care units as a result of premature birth, congenital abnormality, or injury. Parents identified limited or no choice in their decisions. The pervasive practice of encouraging older adults to complete advanced directives was called into question. Older adults trusted family members to make decisions because their preferences were not enduring but changed as they aged and their health conditions changed. Decisions that surround death are contextually bound, clinically complicated, and emotionally laden. Future research must be conducted from an emic perspective in collaboration with patients and families to discern their experience and to develop strategies that health care professionals can use to help co-create meaningful end-of-life care and decisions for people across the life span.
Session #1223 - Graduate Student Poster Session
The 29th Annual MNRS Research Conference (April 1-4, 2005)