Although families increasingly face ethical decision making about withholding or withdrawing life support from incompetent, critically ill family members, little is known about how they experience this event. The long-term objective of a program of research on family ethical decision making is to generate knowledge that will guide health providers as they interact with families around ethical decision making. In this initial small scale study, the primary aim is to describe families' perceptions of their experiences, reasoning processes, coping processes, and outcomes as they make ethical decisions to withhold or withdraw life support from ill, decisionally incompetent adult family members. A secondary aim of the study is to assess the content validity of an existing measure of family coping during crisis by using the measure to index coping during the specific crisis of family decision making about life support. Grounded theory methodology will be used, and will be augmented with a questionnaire that measures family coping during crisis. Data for both aims will be collected from an estimated 25 members of families who were involved in making withhold or withdraw decisions for adult family members who were decisionally incomperent, without advance directives, and whose deaths were anticipated. Data will be collected from patient records and from family members of approximately 10 deceased patients 2 to 6 months after the family member died on a university hospital medical unit. Data collection approaches incllllude review of the deceased patient's record, a questionnaire, and an interview. Patient record data will be used to descrive the patient characteristics in the situations faced by the families. Qualitative data from interviews with family members will be analyzed with the grounded theory approach of open coding, constant comparative anallllysis, generating theoretical memos, theoretical sampling, and theorretical saturation. Quantitative data from the coping questionnaire will be compared to qualitative data on coping for the degree of correspondence and non- corrrespondence between them. Similarities and differences between these data will guide the assessment of content validity and the possible future development of measures of family coping during ethical decision making.
