This two year NIH-funded study investigated the extent of cultural variation at end of life using a prospective, mixed methodological design. This presentation will focus on differences in the views of patients with end stage disease and their families around who should be the primary decisionmaker. We will also discuss variations in families around communication of treatment preferences using quantitative and qualitative data.
Patients with advanced lung and colon cancer and their family caregivers were interviewed at two different points to examine differences in views towards autonomy, extent of patient-family communication around treatment preferences, assessments of quality of life, role of religion and spirituality in coping, and family caregiver strain and gains from caregiving. Audiotaped in-home and in-hospital interviews were conducted with patients and family caregivers, as well as telephone interviews with survivors and afterdeath interviews with family caregivers.
While the majority of all patients and caregivers believed that the patient, not the family, should be the primary decisionmaker, there were important nuances in responses that suggest a continuum around the notion of autonomy. Discussion of treatment preferences occurred twice as frequently among White patients and their families than among African American patients and their families. Qualitative data will be used to elucidate reasons for identified differences.
Learning Objectives: 1.Explain how patients and families dealing with end stage disease value the notion of patient autonomy in decisionmaking at end of life. 2.List the reasons that are used by patients to explain why they do not communicate their treatment preferences with their families. 3.Discuss the role of ethnicity in accounting for differences in life-sustaining preferences.
Keywords: Decision-Making, Quality of Life
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: Jefferson Health System
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.