Quality of LifeIntensive care unit cultures and end-of-life decision making☆,☆☆
Introduction
Researchers studying end-of-life decision making (EOLDM) and limitation of life-supporting technologies in intensive care units (ICUs) have found difficulties with both care and the decision-making process. Problems identified include perceptions of overuse of technology [1], treatment of dying patients not congruent with preferences [2], failures in communication and pain control [3], [4], lack of family access and lack of sensitivity to the family [4], [5], wide variation in how life support is used [6], and a high burden of patient symptoms [7].
Most studies have been retrospective, either provider- or family-focused rather than including both, based in a single ICU, or comprised data aggregated across multiple ICUs. Until very recently, researchers have focused on individual provider-patient/family interactions, ignoring the unit level context for these interactions and how that context may differ across ICUs. The limitations of this work have been identified as the need to address the health care context, not just individual behavior [8]; the need for more family perspective [9]; and a lack of focus on the culture of the organization [10], [11]. We chose to focus on the cultures of ICUs, the organization in which they resided, and the broader social context to identify additional insights and approaches to addressing already identified difficulties in EOLDM in these settings.
Culture is shared knowledge and customary actions, constituted by social systems, manifest in the rules, roles, relationships, and actions of persons [12], [13], [14], [15], [16], [17]. Persons in an institutional setting, such as an ICU, fill roles, exercise rights and privileges, and are expected to conform with established rules for action [18], [19]. The rules may be explicit and written, assumed, taken for granted, or not acknowledged. Decision making is affected by the culture in which it takes place.
Three recent ethnographic studies about the culture of end of life (EOL) in adult ICUs were identified [20], [21], [22], [23], [24], [25], [26], [27]. One researcher studied only British ICUs [25], [26], [27]. Another studied dying patients in US acute care hospitals and incidentally included ICUs [23], [24]. Neither researcher focused on comparisons of cultures across ICUs. The third study [20], [21], [22] was undertaken to assess EOL issues in surgical ICUs (SICUs) and involved comparisons of 2 units from different parts of the United States and 1 in New Zealand. These ethnographies were not designed to explore variation among types of ICUs within one institution.
People in many different roles may be involved in making decisions about limitation of treatments in ICUs. Health care providers may include physicians [29], [30], [31], [32], [33], [34] (attendings, intensivists, residents, consultants), nurses [35], [36], [37] (staff, managers, practitioners), social workers, chaplains, and others, who interact with each other [28], [29], [30], [31], [32], [33], [34], [35], [36], [37], [38], [39], [40], [41], [42], [43], [44], [45], [46], [47], [48]. Patients [49], [50], [51], [52], [53], [54], [55] may or may not be able to participate in decision making. Families [56], [57], [58], [59], [60], [61], [62], [63], [64], [65], [66], [67], [68], [69] may be large or small, related by blood or legal ties (eg, marriage), or neither (eg, significant others, close friends). Obviously, persons in these multiple roles have been studied in some depth, but few researchers have attempted to study all participants interacting within a unit context. Persons in these roles bring different expectations, and for providers, these expectations vary by discipline and specialty.
This research was designed to study EOLDM in four US adult medical and SICUs within one hospital by systematically examining their cultures and evaluating similarities and differences and the relationship of those cultures to EOLDM. We studied instances of both problematic and nonproblematic decision making to identify barriers and facilitators. Problematic EOLDM involves conflicts among family members, among providers, and/or between providers and family members. Conflicts are not uncommon. There are many recent studies of conflict or its management in dying patients; several focused on EOLDM [70], [71], [72], [73], [74], [75], [76], [77], [78], [79], [80], [81], [82], [83].
Our purpose was to clarify unit cultures surrounding EOLDM in each of the 4 units studied. Understanding differences in ICU cultures and expectations of different participants about EOLDM could contribute to the design of interventions mutually acceptable to patients, families, and health care providers to improve the quality and outcomes of decision making.
Section snippets
Design and methods
This was a prospective ethnographic study of 4 adult ICUs. A 6-member research team used participant observation, fieldnotes, and semistructured interviews of providers, patients, and families to describe the EOLDM cultures of each unit and to provide an understanding of differing expectations. Team members were faculty and doctoral students in a school of nursing. They represented the disciplines of sociology, anthropology, and nursing. Their clinical backgrounds included medical and surgical
Results
Both similarities and differences in EOLDM among the four ICUs were influenced by formal (written) and informal rules, by unit structure, by participant roles and relationships (e.g., physicians, nurses, family members, patients), and by unit processes reflective of the cultures (Table 2). Key aspects of similarities and differences in unit cultures and their implications for EOLDM are highlighted below. To preserve confidentiality of our participants, the individual units are not identified in
Discussion and conclusions
In assessing key similarities and differences in the cultural context of adult ICUs in one hospital that influenced EOLDM, we found that ICUs were not monolithic, one like another. However, EOLDM occurred repeatedly within units in a patterned fashion related to structure and culture of each unit. Both similarities and differences across units influenced EOLDM. Whether key aspects of the culture were viewed as facilitators or barriers depended upon the role perspective of the participant.
Acknowledgments
The authors thank the patients, families, and health care providers who allowed us into their lives during the data collection for this study and Dr Margarete Sandelowski for her critique and wisdom.
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Cited by (0)
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The study was supported by the National Institutes of Health (Bethesda, MD), National Institute of Nursing Research, RO1 NR04940.
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The study took place at the University of Rochester, Rochester, NY.