1148 Some uncertainty in the communication process can maximized. This ﬁrst proactive step was laying the probably be related to an interpretation of current legis- groundwork [35] by establishing a relationship and lation on decision-making processes when the patient providing the family with emotional support. The next lacks decision-making capacity [2]. The legislation gives step, as emphasized in other studies and guidelines [22– no details as to how and when families should be included 24, 35, 36], introduced a clearer communication of the in decision-making. Written guidelines on intensive care prognosis, allowing the family and the clinicians toge- ethics are not common in Scandinavia [19]. However, a ther to revise the initial goals [37]. Nurses were included new Norwegian guideline for end-of-life decisions exists, in the meetings to some degree and used their acquired but its implementation is still controversial among phy- relationship and knowledge to support the family after sicians, who may be reluctant to change established the meetings. Consistent with other studies, our results practice [25]. Our results, nevertheless, show clearly that therefore suggest that nurses should engage more in end- families experience the usual approach based on vague of-life situations and contribute to building a team for communication as inappropriate. family support [13, 28, 38]. For these few families who ‘‘Wait and see’’ might be a term that physicians use to experienced shared decision-making, the ‘‘wait-and- delineate a period of time to ensure that the withdrawal see’’ expression was understood as a fragile time in decision is correct [16, 26]. The process of deﬁning a which they were able to prepare for the ﬁnal decision to turning point where treatments are considered futile is withdraw treatment. ethically challenging [17, 19]. However, the expression This study is limited by the participants’ recollections ‘‘wait and see’’ is itself elusive, and together with con- of the decision-making experience. It is impossible to tinued full treatment and vague communication, it know if their recollections exactly describe their thoughts obscures the severity of the situation, which the time limit and feelings at the time of the decision. Although this is meant to signal [13, 26]. Our study demonstrates that qualitative methodology limits generalization, the ﬁnd- this often resulted in delayed communication with fami- ings still provide insight into the decision-making process lies about adjusting treatment goals, denying them the as the families experienced it, and these insights may be opportunity to communicate the patient’s preferences. transferable to ICUs other than those that participated in Similarly to other studies, this study shows that families the study. need regular meetings with physicians with an appropriate balance between hope for survival and accurate and straightforward information about the illness and the prognosis [27, 28]. When physicians ﬁnally raise the end-of-life issue, Conclusions they seem to have run out of time to include the family. Consistent with other Scandinavian research in this ﬁeld, Families of ICU patients express the need for unambig- most participants in our study were merely told the uous communication and clear information about their decision [29, 30]. Hence, they were left with unanswered loved one’s condition and prognosis while maintaining questions and sometimes doubted the decision. They hope for recovery. Families often have difﬁculties expected their contribution to the process to be important understanding and interpreting the information presented. for the patient; on the other hand, some studies have Nurses seldom participate in family conferences, and their questioned whether the family is able to communicate the communication with families is regarded as vague. The patient’s ‘‘best interests’’ with regard to values and quality ‘‘wait and see’’ concept functions to conceal the essential of life issues and, thereby, protect the patient’s autonomy question and delay the inevitable choice. Hence, most [7, 31, 32]. However, if the voice of the family is sup- study participants experienced that the decision-making posed to express the patient’s wishes, it is important that process took place without their participation. Several they be allowed to participate earlier in the decision- families felt that the ﬁnal decision was hastened. This making process. indicates a lack of attention to patient and family auton- As reported in other studies, nurses seldom took part omy. The study suggests that physicians and nurses in in end-of-life discussions or in family–physician confer- Norwegian ICUs must discuss how to include families in ences [17, 33, 34]. Nurses and doctors are, therefore, not the decision-making process. The legislation encourages utilizing the waiting period properly in order to prepare focus on improving communication skills both within the the family for the ﬁnal end-of-life decision. A few family ICU team and between the team and families [39, 40]. members were satisﬁed with and (to some degree) Guidelines can be useful in helping clinicians improve included in the decision-making process (Fig. 1). The these processes. ICU period for these patients was limited to a few days. A possible interpretation is that the patient was expected pAactkinngo wICleUdsg,mtoentthse Ppraorftoicuinpdangtsr,ataitnuddetoisaellxtceonldleeadg utoesthwehpoarhtaicvie- to die soon at the time of admission to the ICU, and read, discussed, and commented during the research process. This that communication efforts towards families were thus work was funded by Northern Norway Regional Health Authority,