Background Nurses are present at the bedside of patients undergoing withdrawal of life support more often than any other member of the health care team, yet most publications on this topic are directed at physicians. Objectives To describe the training, guidance, and support related to withdrawal of life support received by nurses in intensive care units in the United States, how the nurses participated, and how the withdrawal of life support occurred. Methods A questionnaire about withdrawal of life support was sent to 1000 randomly selected members of the American Association of Critical-Care Nurses, with 2 follow-up mailings. Results Responses were received from 48.4% of the nurses surveyed. Content on withdrawal of life support was required in only 15.5% of respondents’ basic nursing education and was absent from work site orientations for 63.1% of respondents. Nurses’ actions during withdrawal were most often guided by individual physician’s orders (63.8%), followed by standardized care plans (20%) and standing orders (11.8%). Nurses rated the importance of emotional support during and after the withdrawal of life support very highly, but they did not believe they were receiving that level of support. Most respondents (87.5%) participated in family conferences where withdrawal of life support was discussed. After physicians, nurses were most influential concerning administration of palliative medications. Patients’ families were present during withdrawal procedures between 32.3% and 58.4% of the time. Conclusions To improve their practice, intensive care nurses should receive formal training on withdrawal of life support, and institutions should develop best practices that support nurses in providing the highest quality care for patients undergoing this procedure.

Background Most deaths in intensive care occur after withdrawal of life support. Although preparation of patients’ families is recommended, the specific information required has not been theoretically developed or tested. Objective To assess the feasibility of testing 4 tailored messages to prepare families of patients having a planned withdrawal of life support, to assess barriers to conducting such a study, and to obtain preliminary data on measurable effects that could be used to compare such preparation with usual care. Self-regulation theory was used to structure the messages. Methods Families were randomly assigned to usual care (n=10) or to an intervention group (n=10) that received 1 of 4 tailored messages to prepare them for withdrawal of life support. They were contacted 2 to 4 weeks later to complete the Profile of Mood States and to give their evaluation of the experience, inclusive of the information received. Results Compared with the usual-care group, the intervention group was significantly more satisfied with the information they received and understood better what was to happen. The intervention group had lower negative mood scores and higher positive mood scores than did the usual-care group, although the difference was not significant. Unsolicited comments by the usual-care participants were requests for the specific information that had been received by the intervention group. Conclusions The information provided was considered helpful. A larger sample might yield more significant differences. Further work is needed on other aspects of preparation such as healthcare support, spiritual issues, and preparation for funeral arrangements.

• Background Providing appropriate end-of-life care has become a primary concern of nurses and the public. The highly technological critical care environment may not facilitate such care. • Objective To collect suggestions from critical care nurses for improving end-of-life care in intensive care units. • Methods A geographically dispersed, random sample of 1409 members of the American Association of Critical-Care Nurses was sent a 72-item survey on perceptions of end-of life care. The survey included a request for suggestions on ways to improve end-of life care. • Results Of the 861 critical care nurses who responded to the survey, 485 offered 530 suggestions for improving end-of-life care. Providing a “good death” was the major theme; specific suggestions included ways to help ensure death with dignity and peace. Barriers to providing good deaths included nursing time constraints, staffing patterns, communication challenges, and treatment decisions that were based on physicians’ rather than patients’ needs. Suggestions for providing a good death included facilitating dying with dignity; not allowing patients to be alone while dying; managing patients’ pain and discomfort; knowing, and then following, patients’ wishes for end-of-life care; promoting earlier cessation of treatment or not initiating aggressive treatment at all; and communicating effectively as a health-care team. Educational initiatives for professionals and the public were also suggested. • Conclusions Implementation of specific suggestions provided by experienced critical care nurses might increase the quality of end-of-life care, facilitating a good death for intensive care patients.

• Background Little information is available nationally about critical care units and nurses. What is known about nurses in hospitals is generally not broken down among all the specialties. • Objectives To describe issues of workforce, compensation, and care specific to critical care units and nurses who work in them. • Methods The American Association of Critical-Care Nurses conducted a survey of randomly selected facilities with critical care units in the United States. Facilities were solicited via e-mail to respond to a survey on the World Wide Web and provide information on operations, evaluations, nursing staff reimbursement and incentives, staffing, and quality indicators. Responding facilities also provided contact information for units in the facilities. Those units were surveyed about operations, acuity systems, staffing, policies on visitation and end-of-life care, administrative structure, documentation, certification, professional advancement, vacancy/floating, staff satisfaction, orientation, association membership, wages, advanced practice nursing, and quality indicators. • Results The initial response rate (120 of 658 eligible facilities) was 18.2%, and 300 of 576 solicited units nominated by the facilities responded, yielding a 52.1% response rate for the second phase. • Conclusions These survey data define the scope and intensity of services offered and provide more specific figures about staffing issues and unit practices than has been accessible before. Healthcare providers may use this information for benchmarking purposes, especially for instances in which the tables provide data for each particular type of critical care unit.

• Background Critical care nurses care for dying patients daily. The process of dying in an intensive care unit is complicated, and research on specific obstacles that impede delivery of end-of-life care and/or supportive behaviors that help in delivery of end-of-life care is limited. • Objective To measure critical care nurses’ perceptions of the intensity and frequency of occurrence of (1) obstacles to providing end-of-life care and (2) supportive behaviors that help in providing end-of-life care in the intensive care unit. • Methods An experimental, posttest-only, control-group design was used. A national, geographically dispersed, random sample of members of the American Association of Critical-Care Nurses was surveyed. • Results The response rate was 61.3%, 864 usable responses from 1409 eligible respondents. The highest scoring obstacles were frequent telephone calls from patients’ family members for information, patients’ families who did not understand the term lifesaving measures, and physicians disagreeing about the direction of a dying patient’s care. The highest scoring supportive behaviors were allowing patients’ family members adequate time alone with patients after death, providing peaceful and dignified bedside scenes after death, and teaching patients’ families how to act around a dying patient. • Conclusions The biggest obstacles to appropriate end-of-life care in the intensive care unit are behaviors of patients’ families that remove nurses from caring for patients, behaviors that prolong patients’ suffering or cause patients pain, and physicians’ disagreement about the plan of care.

• Background Patients’ charts have been a source of data for retrospective studies of the quality of end-of-life care. In the intensive care unit, most patients die after withdrawal of life support. Chart reviews of this process could be used not only to assess the quality of documentation but also to provide information for quality improvement and research. • Objective To assess the documentation of end-of-life care of patients and their families by care providers in the intensive care unit. • Method Charts of 50 adult patients who died in the intensive care unit at a large midwestern hospital after initiation of withdrawal of life support (primarily mechanical ventilation) were reviewed. A form developed for the study was used for data collection. • Results The initiation of the decision making for withdrawal was documented in all 50 charts. Sixteen charts (32%) had no information on advance directives. Eight charts (16%) had no documentation on resuscitation status. About two thirds of the charts documented nurses’ participation during the withdrawal process; only one tenth documented physicians’ participation. A total of 13 charts (26%) had no information on the time of initiation of the withdrawal process, and 11 (22%) had no documentation of medications administered for withdrawal. Thirty-seven charts (74%) had information on whether the patient was or was not extubated during withdrawal. • Conclusion Comprehensive documentation of end-of-life care is lacking.

• Background Lack of communication from healthcare providers contributes to the anxiety and distress reported by patients’ families after a patient’s death in the intensive care unit. • Objective To obtain a detailed picture of the experiences of family members during the hospitalization and death of a loved one in the intensive care unit. • Methods A qualitative study with 4 focus groups was used. All eligible family members from 8 intensive care units were contacted by telephone; 8 members agreed to participate. • Results The experiences of the family members resembled a vortex: a downward spiral of prognoses, difficult decisions, feelings of inadequacy, and eventual loss despite the members’ best efforts, and perhaps no good-byes. Communication, or its lack, was a consistent theme. The participants relied on nurses to keep informed about the patients’ condition and reactions. Although some participants were satisfied with this information, they wished for more detailed explanations of procedures and consequences. Those family members who thought that the best possible outcome had been achieved had had a physician available to them, options for treatment presented and discussed, and family decisions honored. • Conclusions Uncertainty about the prognosis of the patient, decisions that families make before a terminal condition, what to expect during dying, and the extent of a patient’s suffering pervade families’ end-of-life experiences in the intensive care unit. Families’ information about the patient is often lacking or inadequate. The best antidote for families’ uncertainty is effective communication.