A study of family decision-making about life support using the grounded theory method

Abstract

<p>The grounded theory method was used to study the process of life support decision making in 16 families in a critical care setting. Semi-structured interview and observation techniques were employed to gather data from 30 family members. Eight family members were interviewed more than once providing a total of 42 tape-recorded interviews and 32 field-noted observations. Additionally, eleven family/health care provider conferences were recorded. Family decision making about life support was a multifaceted process of deliberation occurring as a trajectory having two phases: the uncertainty phase and the decision phase. In three families, the prior experience of the patient's losses due to a chronic illness constituted a pre-phase or period of preparation for the final loss in critical illness. For all families, the work during the uncertainty and decision phases focused on fulfilling roles as caring, concerned family members and simultaneously, doing intrapsychic work focused on finding clarity and meaning in the experience. The activity of the families was carried out as advocating and deciding. Advocating included (a) being there (staying near by, visiting at the bedside), (b) monitoring (gathering information, watching and listening to the patient), and (c) representing the patient by obtaining the best medical care. Advocating began in the uncertainty phase and intensified during the decision phase. Deciding began with the realization that life support decisions needed to be considered. Deciding was carried out using four methods of deliberation: (a) deciding what the patient wanted or would have wanted; (b) deciding what was in the patient's best interests (such as concluding that the patient had endured enough suffering); (c) delegating decisions to a divine power or fate; and (d) deciding to continue the use of the ventilator (despite advice from physicians to withdraw) based on moral prohibition that withdrawal was synonymous with killing the relative. Thirteen families used primarily the forms of deciding based on what the patient wanted or would have wanted and what was considered best for the patient by the family. Three families used primarily delegation to a divine power or fate and deciding to continue life support based on moral prohibition against withdrawal. In the latter three cases, the decision-making process was considered by health care workers as prolonged. Roles of family members impacted the deciding process. In all cases a primary decision-maker role was assumed by a person who had the closest formal and personal relationship to the patient. In nine of the cases, the primary decision maker facilitated the decision by gathering opinions from family members, attempting to understand and synthesize the opinions, and bringing the family to a consensus. The deciding process was prolonged in cases wherein (a) the patient had indicated that life support be continued, (b) the primary decision maker could not decide to withdraw the ventilator, (c) the group of core decision makers was large and lacked a facilitating leader, and (d) communication disturbances and personal conflicts existed in the family.</p>