1144 No. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 In Norway, legislation gives the physicians in collaboration decision in which they are the principal arbiter [14–16], with other clinicians (physicians and nurses) the ﬁnal and this often occurs without including nurses [17, 18] or decision-making authority [2]. The Patients’ Rights Act (1, making ethical reﬂections explicit [16]. Moreover, some §4.6) states that, in order to determine patients’ wishes, if physicians are reluctant to discuss ICU goals and methods possible information shall be obtained from next of kin with relatives when the patient is incompetent [19]. about the patient’s presumed consent [2]. Involving family Written advanced directives are not common [19] and members as informants and spokespersons for the patient is have no legal authority in Norway. a challenging process. To participate in the decision-making The aim of this study is to examine relatives’ experi- process, they need detailed information and thorough ence of the end-of-life decision-making process in comprehension of the patient’s prognosis. Moreover, rela- Norwegian ICUs. To what degree did they feel included? tives do not always know the patient’s preferences and may Did they receive necessary information? Were they asked have difﬁculty discriminating between the patient’s values about the patient’s preferences, and how did they see their and their own interests [7, 8]. It may also be difﬁcult for role as a family member in the decision-making process? them to understand the complexity and severity of the condition in an emotionally demanding situation [9]. Pro- viding family members with appropriate information over time increases their ability to participate in the decision- Materials and methods making process [1, 10–12]. A European consensus committee advocates a shared Study design approach to end-of-life decisions, involving both the caregiver team and patient surrogates. The family’s role is A constructivist interpretive approach to the grounded to communicate the patient’s preferences [7, 13]. How- theory method of qualitative research was employed [20], ever, according to Scandinavian studies, physicians with interviews of 27 bereaved family members of 21 consider limiting intensive care treatment to be a medical ICU patients who died after a decision to withhold or Table 1 Participant demography and relation to former intensive care unit patients Age (years) Participant relation Age (years) Months from patient death to interviewb Study participants: 20 female, 7 male. Age between 20 and b Average time from patient death to family interview: 9 months 80 years, average age 49.7 years a Patients: 8 female, 13 male. Age between 33 and 85 years, average age 61 years Patienta Male Male Female Male Female Female Male Male Male Male Male Female Female Male Female Female Male Female Male Male Male 61 55 68 57 57 62 59 35 80 68 33 45 77 81 40 38 74 75 85 67 68 55 Wife Wife Daughter Daughter Mother Brother Husband Daughter Wife Wife Daughter Wife Mother Wife Sister Sister Daughter Husband Son Wife Husband Daughter Daughter Son Brother Daughter Wife 59 54 36 42 80 51 76 27 33 79 48 54 50 46 42 41 20 78 54 39 34 48 34 51 61 45 60 12 8 7 7 8 12 12 11 5 3 12 10 6 11 9 11 6 10 6 11 11