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Abstract |
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 Top Abstract Review of the LiteratureMethodsResultsFactors That Made...Factors That Facilitate Changes...DiscussionStudy LimitationsConclusionsReferences |
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• Objective To explore nurses’ experiences of moving from cure- to comfort-oriented care and to describe factors that inhibit or facilitate such transitions.
• Method A descriptive qualitative research design with brief observation of participants and focus group interviews was used. Participants were 19 female and 5 male nurses in an 18-bed medical intensive care unit in a 719-bed acute care hospital in the northeastern United States.
• Results The transition point between cure- and comfort-oriented care was unclear. Nurses reported that the patient’s age, misunderstanding of the illness by the patient’s family, family discord, and shifting medical care decisions made end-of-life transitions difficult. Conversely, developing a consensus among patients, patients’ families, and staff about the direction of medical therapy; exhausting treatment options; and patients’ lack of response to aggressive medical interventions helped nurses move toward comfort care.
• Conclusions The most distressing situations for staff were dealing with younger patients with an acute life-threatening illness and performing futile care on elderly patients. End-of-life transitions were difficult when patients’ families had conflicts or were indecisive about terminating treatment and when physicians kept offering options that were unlikely to change patients’ prognosis. The most important factor enabling nurses to move from cure- to comfort-oriented care was developing a consensus about the treatment.
Notice to CE enrollees:A closed-book, multiple-choice examination following this article tests your understanding of the following objectives:
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MICU nurses often struggle to balance the requirements for technological competence, task proficiency, and attention to the psychosocial needs of patients. These nurses routinely are involved in negotiations to maintain or withdraw life support. Little is known about how nurses experience the change from aggressively attempting to extend life to letting life end. A descriptive qualitative research design with brief observation of participants and focus group interviews was used to assess nurses’ experiences associated with transitions from cure- to comfort-oriented care in the MICU.
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Review of the Literature |
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Nurses are important figures in ICUs because of their intimacy with patients and patients’ families, their intermediate position between patients and physicians, and their constant presence in the unit.
This proximity to patients and patients’ families, however, can have a marked effect on the psychological well-being of ICU staff and can influence the staff members’ clinical decision making. For example, how nurses manage the subjective tension caused by discrepant coexisting beliefs and actions is unclear. Information on how MICU nurses switch from cure- to comfort-oriented care is limited. The main objectives of research on occupational stress in the ICU have been identifying situational or environmental stress,4–7 determining sources of frustration and satisfaction in ICU nursing,8,9 and observing the behavior of ICU staff.10–13 Infrequently, the coping behaviors of ICU nurses have been described.14–16
Several causal factors contribute to occupational stress in nursing. These include inappropriate advice from junior and inexperienced staff, conflicts within the multidisciplinary team, bureaucracy, inadequacies in nursing care provided by others, verbal abuse from patients and patients’ relatives, physical abuse from patients, dealing with death and dying, feelings of helplessness when watching a patient suffer, the relapse or sudden death of a favorite patient, shift work, lack of emotional support, conflict with doctors, and uncertainty due to political issues.2,17–22 Sawatzky7 cited the unnecessary prolongation of life, apathetic or incompetent nursing and medical staff, unresponsive nursing leadership, and noise as additional sources of stress for nurses.
The major shortcoming of these various research investigations is that they were predominantly based on anecdotal observations and descriptive or self-reported questionnaire data. Most studies also had small data samples and selection bias. Additionally, the definition of stress differed widely from study to study, making comparison of results among studies difficult.
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Methods |
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The research questions that guided this investigation included the following:
Setting and Participants
The study took place in an 18-bed MICU at Rhode Island Hospital, a 719-bed acute care hospital. A total of 19 female and 5 male nurses participated in the study.
| Caring for dying patients was described as ordinary rather than extraordinary.
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Data Collection
Focus group interviews, informal conversations, and observation of participants were used to gather the perspectives of MICU staff. Observations were made during a 6-week period (April–May 2003) and included nurses representing all shifts. Field notes describing participants’ speech, action, and nonverbal behaviors were recorded. After informed consent, all participants were asked to complete a brief questionnaire. These data were complied and used to provide descriptive information about the personal characteristics of the MICU staff, including their age, sex, ethnic origin, marital status, highest level of nursing education, years in general nursing, and years of experience in critical care.
Focus group interviews were recorded on audiotape and via brief written notes. Audiotapes were transcribed verbatim after each group session by a professional transcriber. The average group size was 4 or 5 participants per session. In order to allow flexibility in attendance, 5 group sessions were offered at different times during a 6-week period. Group interview sessions were held in the MICU conference room so that staff members could remain near critically ill patients while on duty.
Two researchers with doctoral degrees conducted the study. The first, a nurse researcher, observed participants, recorded field notes, and later functioned as the assistant moderator for the focus groups. The second, a cultural anthropologist with extensive experience with focus group interviews served as the primary moderator for the focus groups. The nurse researcher compiled all the clinical data. Together, both researchers reviewed the data.
Rigor
Rigor refers to the believability and trustworthiness of the data. Ultimately, however, it is up to readers to decide if the study is believable. Lincoln and Guba23 offer 4 criteria for establishing trustworthiness of data: credibility, transferability, dependability, and confirmability. The data collected were briefly summarized and fed back to participants for member checking of the data’s validity as outlined by Higginbottom.24 Nyamathi and Shuler25 thought that focus group data have high face validity because of the credibility of comments from the participants themselves. Transferability was addressed by using direct quotes when presenting data f indings and by providing detailed descriptions of observed group behavior. Dependability was achieved by using a standardized interview guide for each focus group session as recommended by Bader and Rossi.26 The dependability of the data was further enhanced by the auditability of the nurse researcher’s decision trial, which was determined by the session transcripts, field notes, and interview guide questions. Confirmability was obtained by having data reviewed individually by both group facilitators, reviewed together by both facilitators, and reviewed by the research participants themselves.
Ethical Considerations
The study was approved by the internal review board committee at the University of Rhode Island and the human subjects review committee at Rhode Island Hospital. Research participants were given information about the objectives of the study, and any specific questions were answered before the scheduled group meetings. Each subject was asked to provide verbal as well as written informed consent before participating in the study. Participants did not identify themselves by name on the questionnaires they filled out before the group meeting, which were coded so that only the nurse researcher had access to the codes. All participants were informed that group sessions would be audio taped for the purpose of transcription.
Data Analysis
Analysis consisted of compiling demographic data on all participants, transcribing audiotape recordings of group sessions, and reviewing data obtained from observational field notes. The analysis began as the data were being gathered and was continuous throughout the data collection period. The analysis generally followed the method outlined by Miles and Huberman,27 which included data reduction, data display, and drawing of conclusions. First, the massive amount of data was organized into initial categories that were preestablished on the basis of the research questions. In order to arrange and think about the more textually embedded data, a chart was constructed for data display. Drawing conclusions required consideration of what the analyzed data meant and an assessment of what the data implied with respect to the original research questions.
The group moderator (the cultural anthropologist) assisted with the primary analysis of data. The assistant moderator (the nurse researcher) performed an independent review as suggested by Crawford and Acorn.28 Discussion between the 2 moderators served to verify the themes, patterns, and categories. The researchers also reviewed audiotapes to validate the categories on the basis of voice inflection and content as recommended by McDaniel and Bach.29 This process was repeated after the information was set aside for several weeks.
| A clear transition from cure- to comfort-oriented treatment was not reported; rather, treatment was viewed as a dynamic and continuous process.
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Results |
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Effects of Continual Involvement With Dying Patients and Their Families
Group participants did not describe a clear transition from cure- to comfort-oriented care during patients’ treatment. They generally viewed care of patients as being a continuous and dynamic process. From the perspective of the nurses, caring for dying patients was described as ordinary, rather than extraordinary, and was seen as a matter-of-fact routine of "ventilating them, of putting them on their pressors, of bathing them, of feeding them, [and] of withdrawing support so that they could die." The focus for dying patients was to "allow people to die with dignity and for them to be as comfortable as possible." Nurses stated that "even though it is sad, you keep them comfortable; that’s what makes it easier." The nurses said that experiencing the death of a patient was not considered similar to losing someone close to them.
Nurses readily acknowledged that the MICU was a place where "a large percentage of patients are going to die and not get better." Clearly, the group sentiment was "If you come here and you’re uncomfortable with death . . . then you’re not going to do well here." In terms of learning to deal with death, one participant stated, "I don’t know if you can prepare yourself. I think it is just part of the job and comes with working here." This belief was reiterated by another group member, who added, "It’s weird, to go from doing, doing, doing to okay now, we’re not going to do anything . . . you don’t give it a thought . . . [it] just comes natural to us." Additionally, several nurses stated, "You know what’s going on with the patient so you’ve already accepted it. They are at the end of the road so it’s not [an] adjustment for you. In your mind, you know [what] the eventual end is going to be."
Working in the MICU, nurses discovered that there are fates worse than death. One nurse reflected as follows:
I think you see so much of the suffering that you turn to yourself saying "you know, it’s okay, it is okay to go." It is okay to end it because nobody should have to go through that, and I think that’s where you start to look at it from.
Dying in the MICU was described as a "refocus for the whole unit, because everyone knows that someone is dying." Death was acknowledged as a topic "we talk little about" but was seen predominantly as a "personal thing that everyone kind of processes." One participant put it this way, "I think if you really started thinking about all the stuff you see and do . . . you couldn’t do your job . . . wouldn’t be able to come here." Conversely, another nurse commented as follows:
To be there when someone is dying is sometimes the better part of what I do as a critical care nurse. I feel bad for some families, but not for a patient that dies, because I truly believe in an afterlife. Their quality of life here is just really, almost zero, so they have to go the next step. The final step.
| Death was acknowledged as a topic "we talk little about."
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Another nurse commented, "It’s almost even a relief to me that this person is going . . . it’s a relief to me when they die." One staff member spoke about the emotional conflict of dealing with a futile care situation while dealing with a family not wanting to let go. She said, "I felt so awful because as they [family members] were praying for him to live . . . I was praying for him to die . . . it’s hard, it’s really hard to do that."
Some patients’ deaths are harder for staff to deal with than others. For example, "when they’re older, [the mood] is much more light," but "when they are younger, it is very serious." As one participant noted,
Younger folk are harder to deal with. They often have children come in and you see the kids. You think about your own kids and your own family. You’re looking at these people and you can feel their pain.
| The conflict of futile care was described as "I felt so awful because they [family members] were praying for him to live . . . I was praying for him to die."
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This type of identification is particularly true when patients are in the unit for an extended period and the staff develops a close relationship with the family. Perhaps the most difficult cases are those involving pregnant or postpartum women who experience severe medical problems. One staff nurse described a horrific situation involving a postpartum mother with acute respiratory distress. The patient had undergone a cesarean section, was doing fine, and just before discharge, pneumonia developed. The nurse recounted, "I was talking to her and her husband, looking at baby pictures." The patient abruptly experienced increasing respiratory distress and required intubation. The nurse went on,
She died during intubation. Nothing we did brought her back. We coded her for an hour and a half. She had absolutely no medical history. It was a real shock. It was completely unexpected. I just sat in the break room and bawled my eyes out. I kept thinking [that the] baby lost its mom today. They were celebrating . . . and now it’s like a horrible tragedy.
Other difficult deaths included patients dying alone and deaths perceived as "unfair." Several participants described patients who were "all alone . . . didn’t have anybody else in the world" or "families that made a loved one ‘do-not-resuscitate’ and [then] leave the person [alone] to die." In either situation, nurses would always stay with patients so that the patients wouldn’t have to die alone. Most staff thought it was difficult sometimes to treat all patients equally:
The 30-year-old [cancer patient] who dies on the ventilator, and the [substance] abuser, who [has] been here 6 or 7 times. You have to give them the same treatment. Yet one [patient] would do anything to stay alive and the other could [not] care less . . . [it] just isn’t fair.
Interestingly, very few comments in the focus group sessions made reference to nurses’ personal religious or spiritual beliefs as a means of coping with patients’ deaths.
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Factors That Made Patients’ Care Difficult |
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Conversely, one staff member thought that "it’s hard to make an argument for a 90-year-old, to go after them so aggressively." Another nurse put it this way,
You’re 90 and in a nursing home. You come in and are sick as anything, but [we] have to do everything because no one is here saying no. I think that is terrible.
What makes treating elderly patients particularly hard is when they come in the [emergency department], there is [no advance directive or person to provide guidance about their wishes], so they do everything. Then they come [to the MICU] . . . [the family] says just give them a few days. Usually when this happens, you know that you are keeping them alive for the family . . . not [for] the patients [themselves].
Nurses realize the distress that patients’ family members experience seeing a loved one dying, yet many nurses thought that the main issue was not about the family "having a hard time." Rather staff members were concerned "about the patient being subjected to things that seem unfair." Most agreed, however, "You’re supporting both the family and the patient, but if the patient is not awake, you support the family."
Another factor that made transitions difficult was dealing with patients’ families who had limited knowledge or understanding of the patients’ illness. As one participant remarked, "Families don’t understand . . . the amount of support you can give someone to keep them alive. They say ‘I want everything [done],’ but they don’t realize what everything is."
One major hurdle for staff was to address patients’ family members’ "high expectations." Not only do most families lack "medical knowledge" but they often do not understand the situation:
They just have no idea about how sick the patient really is . . . they think we can do everything and make [the patient] better.
It’s hard because the patient didn’t want [heroic measures] in the first place. Inside you feel like it’s such a shame because you know [despite aggressive medical intervention] the outcome is going to be the same.
Patients often were unable to participate in their own decision making about medical treatment, lacked an advance directive, and required others to act as surrogate decision makers. Patients’ family members often disagreed about treatment decisions, and several staff members reported that it was "hard to get them all on the same page." Indecision resulted in "keeping the patient alive on all these machines for the sake of the family’s grieving process." Several nurses stated, "Even if [the patient] has an advance directive, a lot of time the families will step over that" and change the patient’s code status on the basis of the family members’ own needs. This change becomes particularly difficult for staff when they find out that "there is a person on the other end getting a paycheck as long as that patient stays alive . . . they keep them alive for that check."
Staff also struggled with the inconsistencies between how physicians manage end-of-life care and the physicians’ subsequent conversations with patients’ families about end-of-life issues. Several nurses voiced frustration that patients’ wishes were not respected. One participant remarked as follows:
If you have an advance directive and you’ve made it perfectly clear that you don’t want anything done—these doctors will go to the family and say "Well, sometimes we can offer this and . . . give [them another] 24 to 48 hours" . . . You know it is not going to make any difference. The person did not want it in the first place.
Yet nurses acknowledged that "it is tough for the doctor . . . [to say] well we [are] going to do everything, [but] it is not going to do any good. They have to give it a try." Nurses felt frustrated when physicians were not direct with patients’ family members about a patient’s prognosis or when they backed down under pressure from the patients’ families to continue futile treatment. One participant summarized her experience as follows:
I’ve been in rounds where the doctor [says] "That’s it. This is enough. I’m going to talk to [the family] today. We are putting an end to this." Then you get into the family meeting and it all changes. Then nothing changes. [The family] completely turned everything around in the meeting. They [doctors] don’t put their foot down.
Clearly one of the biggest difficulties facing MICU nurses was prolonging "the inevitable" and "doing futile care." Nurses acknowledged that many patients "can’t bounce back from a lot of this stuff " and that "quality [of life] becomes the issue." They often recognized futile care situations early in the course of treatment. For example, a nurse stated, "We’ve had patients . . . [who] were prone and on the oscillator. There is no way that this person is going to walk out of here." The problem was compounded when "family members who are totally ignorant to medicine . . . are making decisions that they shouldn’t make." This situation clearly illustrates the difficulties faced by staff when the patients’ family members lacked the medical knowledge to fully understand the complexities or consequences of the situation. Conversely, staff members were aware of the following:
We’re doing all these things to their loved one and [then] all of a sudden we are asking them to withdraw [treatment] . . . in their mind, they’re pulling the plug. That is hard for a lot of families.
Most nurses agree, "Everyone has a different level of acceptance with end-of-life care."
Several nurses thought that they "see modern medicine at its worst" and that "at times we offer too many [treatment] options." One nurse responded:
10 years ago it was more cut and dry. We’ve done everything and that’s the end of it. Now there’s always one more thing that we can try. So we drag it out for a day or 2 days or a week. All you’ve done is raise people’s expectations and hope—only to turn and pull the rug out from under them.
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Factors That Facilitate Changes in the Goals of Care |
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Perhaps the most important factor was having consensus about medical treatment among staff, the patient, and the patient’s family. The best treatment scenario was when everybody "comes to the same feeling or plan" about further treatment. This process usually began when MICU staff worked to get "on the same page when they talk to the family" and "[were aware] not [to] give any hope if there [was] no hope." Staff acknowledge that "it’s hard to let [loved ones] go" and that families "want to keep hanging on instead of giving [the patient] comfort measures only [status]." This situation was commonly addressed by "waiting until they all come to an agreement . . . [usually] within a reasonable amount of time . . . a couple of days."
| The most important factor in facilitating transitions was consensus about medical treatment among staff, the patient’s family, and the patient.
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Nurses often struggle with maintaining a balance between doing what is in the best interest of a patient and yet allowing the patient’s family the time to come to terms with the inevitable end point of providing further medical care. The process of helping families move toward end-of-life care was viewed as a team effort. The process was begun with "kind of [breaking it] to them gently." However, as one participant commented, "Sometimes you get past the point [of gentle conversation] because you have told them in a nice way and they don’t hear it—so you get brutally honest." Another nurse said, "If they are going to ask us how things are and how the patient is doing—we’re going to tell them. Sometimes that causes conflicts because they don’t want to hear what you have to say."
Another nurse stated, "You don’t want to be harsh because you know that they’re going through a terrible time in life . . . but it [is] almost like you have to be that way to get through." Most thought that "if you spell it out exactly, what’s happening in the room, then they will know." In addition, "If its not really blunt, if it sounds too nice, [the patient’s family] will let [continued medical intervention] happen. They just go back home and deny what’s happening in the hospital."
Participants agreed, however, that "you have to know where to draw the line" when confronting families. For example, "Like when you tell them the sensation when you’re doing cardiopulmonary resuscitation and the ribs crack. There’s got to be a line where it is just unethical to talk that way about their loved one."
Other factors that facilitated movement in the direction of end-of-life care include exhausting treatment options, the patients’ lack of response to aggressive treatment, and the nurses desire to maximize patients’ comfort.
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Discussion |
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| Nurses’ greatest frustration with end-of-life transitions did not involve patients’ care but was related to dealing with the complex emotions and indecisiveness of patients’ families.
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Contrary to the concerns of Rashotte et al,31 the staff members of this MICU showed good insight into circumstances or situations that distressed them. They were able to articulate their concerns among their colleagues and access emotional support through the MICU leadership team. This collaborative approach to ethical discussions and decision making is especially helpful when withdrawal of care is being considered.32
Campbell33 thought that stress caused by death and dying could lead to conflicts among staff members. In the study reported here, although managing the dying process was difficult, distress among staff members occurred more commonly when they were confronted with futile care situations. The perception of inappropriate medical care is an important source of moral difficulty for nurses.34–36 Consistent with the findings of Huckabay and Jagla,37 MICU nurses felt most frustrated when patients lingered because of indecisiveness of the physician or the patient’s family and when no consensus existed about the direction of further medical treatment. Maloney and Bartz38 described ICU nurses as being "detached," as compared with nurses who were not from ICUs. MICU nurses in this study were actively involved in patients’ care, providing support to patients’ families, and facilitating and participating in discussions about patients’ medical treatment plans. Staff members’ active rather than detached involvement may have reflected the collaborative practice model supported by the MICU leadership team, or it may also have been the result of a seasoned MICU staff at work. These findings supported those of Chapman,39 who reported that nurses who had consistent access to social support systems experienced less frustration and stress when providing care in ICUs than did nurses with inconsistent access.
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Study Limitations |
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Additionally, all nurses participating in the study were white, and thus the opportunity to obtain end-of-life viewpoints from other cultural perspectives was limited.
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Conclusions |
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Perhaps the most important factor that enabled MICU nurses to move from cure- to comfort-oriented care was developing a consensus about the direction of medical treatment between staff, the patients’ families, and the patients themselves. Other factors included "maxing out" (exhausting) treatment options, the patients’ lack of response to aggressive medical interventions, and the desire to maximize patients’ comfort in order to avoid "torturing the patient."
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ACKNOWLEDGMENTS |
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REFERENCES |
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This article has been cited by other articles:
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  K. S Thacker Nurses' Advocacy Behaviors in End-of-Life Nursing Care Nursing Ethics, March 1, 2008; 15(2): 174 - 185. [Abstract] [PDF]
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