ICUPassive decision-making preference is associated with anxiety and depression in relatives of patients in the intensive care unit
Introduction
Because of the severity of their illness, patients in the intensive care unit (ICU) are usually unable to be involved in decisions about their own care. In the United States (USA), ethical and legal standards call for a surrogate—an individual who is most often a relative (family member) of the patient—to make decisions on the patient's behalf [1], [2]. In research focusing on decision making, the extent to which relatives want to serve in this role appears to vary by country [1], [3]. In France, for example, Azoulay et al [4] showed that only half of relatives wanted to participate in medical decisions about patients in the ICU. In Canada, Heyland et al [5], [6] found that 80% to 90% of family members wanted to do so. In the USA, research has focused on the accuracy of surrogate decision making [7], [8], how surrogates make decisions [9], and their experience of decision making [10], [11]. The preference of relatives in the USA for involvement has not been studied quantitatively, though a qualitative study showed that relatives want to be involved in end-of-life decisions [12].
Investigators have also found elevated levels of anxiety and depression in relatives of ICU patients. First, Pochard et al [13] found that most relatives of patients in French ICUs had symptoms of anxiety and depression. Subsequent studies in France, England, and the USA documented elevated levels of anxiety and depression in relatives during and after an ICU stay [13], [14], [15], [16], [17], [18]. These results raise concerns about the effect of surrogate decision making on the relatives' mental health and the effect of anxiety and depression on their ability to make decisions [13].
The relationship between relatives' involvement in decisions and their levels of anxiety and depression is just beginning to be investigated. In France, Azoulay et al [16] found that relatives who were more involved in ICU decisions were at higher risk for posttraumatic stress symptoms. In the USA, Tilden et al [18] found that the knowledge of patients' wishes, either from prior discussion or from a written advance directive, was associated with a lower risk of posttraumatic stress. The association between relatives' self-stated role preferences regarding ICU decision making and psychological outcomes has not been studied.
We conducted an observational pilot study to describe the decision-making preferences of relatives of ICU patients, to determine whether the relatives had symptoms of anxiety and depression while the patients were in the ICU, and to determine whether there was a relationship between the relatives' preferences and symptoms.
Section snippets
Study setting and subjects
Our study took place at a quaternary care teaching hospital in Pittsburgh, Pa, where we recruited from several types of ICUs—4 medical (32 beds), 3 surgical and trauma (40 beds), 1 cardiothoracic (20 beds), 1 neurologic (20 beds), 1 cardiac (10 beds), and 1 transplant (28 beds).
We recruited adult relatives of 50 patients whose attending physician anticipated an ICU stay of more than 2 days. For each patient, we enrolled the relative who was identified by the patient's family and medical team as
Characteristics of relatives
Between July 2006 and February 2007, we enrolled 50 relatives of ICU patients. Our consent rate was 63%. As shown in Table 1, the mean age of the study participants was 54 years (SD, 12; range, 26-76). Most were female (84%) and white (84%), and about one third (34%) had attended college. Although most (96%) identified themselves as Christian, the remainder did not identify with any religion. The relationships to the patient included spouse (36%); parent (26%); child (12%); sibling, niece, or
Discussion
In our study of 50 relatives of ICU patients at a quaternary care hospital in the USA, we found that all relatives wanted some role in decision making, that most preferred to share decisions equally with the patient's doctor and that those who preferred a passive role were more likely to have symptoms of anxiety and depression. The small sample size in our pilot study limits our ability to make conclusions about associations between decision-making preferences and sociodemographic factors.
Acknowledgments
The University of Pittsburgh Institute for Doctor-Patient Communication (Pittsburgh, Pa) and the Greenwall Foundation (New York, NY) supported this project. The Open Society Institute and the Senator H. John Heinz III Fellowship in Palliative Medicine at the University of Pittsburgh's Institute to Enhance Palliative Care funded the salary (Dr Anderson).
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