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...NICU nurses agreed a private moderately structured interview. Three major themes summarize the data: (1) providing guidance, (2) being positioned in the middle of the communication process, and (3) feeling the emotions of patients and families. The nurse caring for a patient at the end of life provides guidance from the middle or "hub" of the communication process between family members and physicians. The nurses in this study describe an array of feelings associated with this role. This research adds to the limited body of knowledge concerning critical care nurses' experiences with end-of-life care. Providing guidance and being in the middle of the communication process can be a lonely, challenging, yet rewarding position. Results of this study provide a basis for offering emotional support to NICU nurses who care for patients at the end of life.
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Palliative and end-of-life (EOL) care, once associated exclusively with hospice settings, is now becoming an integral component of acute care (Goldberg, 2004; Manfredi et al., 2000). Early recognition of those patients for whom aggressive treatment may not lead to a cure or an acceptable quality of life provides an opportunity for discussion with the patient and family about advance directives and EOL care options. Timely initiation of the discussion and decision making regarding the intensity of care (e.g., change in code status) can prevent needless treatment and suffering for both the patient and the family. Within a nurturing and supportive environment, patients and families can maintain control and optimize physical and emotional comfort and dignity. Because most patients in the neuroscience intensive care unit (NICU) are unconscious, the nurse communicates with family members who are the surrogate decision makers for the unconscious or cognitively compromised patient.
Studies examining the involvement of critical care nurses in the process of EOL decision making (e.g., withholding or withdrawing mechanical ventilation, forgoing cardiopulmonary resuscitation) are few (Baggs & Schmitt, 2000). A disappointing finding in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) was that intensive care unit (ICU) nurses were not very involved in decision making about the level of treatment for patients and that the nurses expressed frustration about their limited role in this decision-making process (Kirchhoff & Beckstrand, 2000; SUPPORT Principal Investigators, 1995). Baggs and Schmitt (1995) found ICU nurses to be less satisfied than medical residents with decisions regarding the level of treatment aggressiveness. Twenty-eight nurses working in a medical ICU expressed being morally distressed when they provided aggressive care to patients whose treatment appeared to be futile (Elpern, Covert, & Kleinpell, 2005). Six critical care nurses said that their primary responsibilities at the end of a patient's life are to support, coordinate, and educate (Jezuit, 2000). A study of 12 nurses who cared for chronically ill ventilator-dependent patients revealed the nurses' vulnerability, suffering, and moral angst (Ray, 1998). Poor communication about prognosis, resuscitation, and patient preferences were important components of the problem (SUPPORT Principal Investigators). Some nurses reported that they were required to carry out a treatment plan that they believed was harmful or inappropriate and that the quality of care negatively affected the patients' well-being (Gaul, 1995). Critical care nurses described the transition from curative to palliative care as awkward (Kirchhoff et al., 2000) and discordant (Halcomb, Daly, Jackson, & Davidson, 2004; Jezuit; Kirchhoff et al.).
Few studies address this critically complex phenomenon. During the National Institutes of Health State-of-the-Science Conference on Improving End-of-Life Care in December 2004, "little evidence was provided regarding the experiences of professional caregivers at the end of life" (National Institutes of Health, 2004, p. 7) because of a lack of research in this area.
Nurses express their moral distress and discomfort when faced with EOL issues in their daily practice. The investigators designed this study as a formal investigation into NICU nurses' perceptions regarding their roles and responsibilities in the decisionmaking process during the change in intensity of care from aggressive care to EOL care for patients.
Method
With this qualitative descriptive study, the investigators did not intend to generate a theory; however, this study contains overtones consistent with grounded theory methodology (Sandelowski, 2000). For instance, the authors' experiences with grounded theory resulted in codes consisting primarily of gerunds (i.e., words ending with "ing"), which is the coding scheme consistent with grounded theory. The product of a qualitative descriptive study is a complete, organized, descriptive summary of the data (Sandelowski). Institutional review board approval was obtained prior to the start of the study, and approved flyers were posted in the NICU inviting the 30 registered nurses to participate.
Sample and Data Collection
The first 12 registered nurses who volunteered to participate made up the sample for this study (Table 1). Private audiotaped interviews were conducted with NICU nurses employed at one hospital. One researcher obtained the nurses' informed consent and conducted all first interviews. Participants were asked interview questions that matched the purpose of the study. These moderately structured questions (Sandelowski, 2000) were generated by the investigators (Fig 1). Consistent with qualitative methodology, the term end of life was not defined by the investigators; rather, the participants spoke freely about what it meant to them. The interviews lasted approximately 1 hour. Checks with participants were used to establish the credibility of the findings (Lincoln & Guba, 1985). For example, during a second private audiotaped interview, each participant read and reacted to a one-page summary of the findings. Participants endorsed the synopsis or made clarifications and offered additional examples to support the existing data. Field notes primarily about the content and tone of the interview were documented after each interview for the purpose of contributing to an audit trail, thereby enhancing the trustworthiness of the data (Lincoln &...
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Correction.(Correction notice), June 01, 2007
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