Nursing Ethics | ResearchGate

Nursing Ethics http://nej.sagepub.com/

Narratives of aggressive care: Knowledge, time, and responsibility Elizabeth Peter, Shan Mohammed and Anne Simmonds Nurs Ethics published online 7 October 2013 DOI: 10.1177/0969733013502804 The online version of this article can be found at: http://nej.sagepub.com/content/early/2013/10/03/0969733013502804

Published by: http://www.sagepublications.com

Additional services and information for Nursing Ethics can be found at: Email Alerts: http://nej.sagepub.com/cgi/alerts Subscriptions: http://nej.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav

>> OnlineFirst Version of Record - Oct 7, 2013 What is This?

Downloaded from nej.sagepub.com at UNIV TORONTO on March 6, 2014

Article

Narratives of aggressive care: Knowledge, time, and responsibility

Nursing Ethics 1–12 ª The Author(s) 2013 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733013502804 nej.sagepub.com

Elizabeth Peter, Shan Mohammed and Anne Simmonds University of Toronto, Canada

Abstract Background: While witnessing and providing aggressive care have been identified as predominant sources of moral distress, little is known about what nurses ‘‘know’’ to be the ‘‘right thing to do’’ in these situations. Research objectives: The purpose of this study was to explore what nurses’ moral knowledge is in situations of perceived overly aggressive medical care. Research design: A critical narrative approach was used. Participants: A total of 15 graduate nursing students from various practice areas participated. Findings: Four narrative types were identified, including ‘‘Wait and see: medical uncertainty,’’ ‘‘Deflected responsibilities to respond to dying, death, or futility,’’ ‘‘Divergent understandings, responsibilities, and temporalities,’’ and ‘‘Privileged medical understandings and responsibilities.’’ Discussion: The knowledge of differentially situated persons is acknowledged in dissimilar ways, the time required to determine that enough has been done is perceived differently, and how moral responsibilities are understood also varies. Conclusions: A better understanding of how social roles influence how time, knowledge, and responsibility are related to the provision of aggressive care is needed. Keywords Aggressive care, end-of-life, feminist ethics, knowledge, moral distress, narrative

Introduction and background Nurses’ experience of moral distress has been documented at least since Andrew Jameton described the concept in 1984. He defined moral distress as arising when ‘‘one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action’’ (p. 6).1 While many sources of moral distress have been identified, witnessing and providing overly aggressive medical treatment have been identified as predominant sources of moral distress for nurses.2–6 This research identifies the sources of nurses’ moral distress, but it does not tell us, using Jameton’s definition, what nurses ‘‘know’’ to be the ‘‘right thing to do.’’ What constitutes moral knowledge is often a neglected topic.7 The scholarship that has explored moral knowledge in nursing has appreciated that it is constituted by more than abstract knowledge of theory. For example, Carper’s8 now classic work identified ethics as a fundamental pattern of knowing that includes not

Corresponding author: Elizabeth Peter, University of Toronto, 155 College St, Toronto, ON M5T 1P8, Canada. Email: [email protected]


2

Nursing Ethics

only a knowledge of norms and codes but also of actions, judgments, and intentions. Later, Benner9 explored the moral knowledge, or the ‘‘good,’’ embedded in the narratives of expert nurses and more recently has identified the importance of clinical experience to develop everyday ethical comportment.10 Similarly, Varcoe et al.11 and Liaschenko et al.12 describe how nurses draw on a number of sources of moral knowledge beyond formal education and theory, including practice experience and the biographical knowledge of patients and families. This work underscores the importance of looking beyond theoretical moral knowledge to the knowledge embedded in the work of nurses and gives direction to discovering what nurses understand to be the ‘‘right thing to do’’ when experiencing moral distress. The purpose of this study was to explore what nurses’ moral knowledge is in situations of perceived overly aggressive medical care. An additional purpose was to understand how this knowledge is shaped by the social space that nurses occupy. The work of philosopher Margaret Urban Walker13,14 was used to frame this study because it characterizes moral knowledge in a way that resonates with earlier scholarship in nursing. Walker13,14 argues that moral knowledge is best identified within practices of responsibility that exist among people, not in abstract theories. Her definition of morality as ‘‘a socially embodied medium of mutual understandings and negotiation between people over their responsibility for things open to human care and response’’ (p. 9)13 points to a naturalistic approach to developing moral knowledge that is located in the interpersonal aspects of everyday life.

Participants and methods After receiving ethics approval from the university’s research ethics board, 15 graduate nursing students were recruited to participate through a notice sent by e-mail by the faculty’s registrar. Nurses who had experienced moral distress when caring for a patient receiving what they believed to be overly aggressive care were eligible to participate. We intentionally invited registered nurses from any area of clinical practice in order to gain a broad range of experiences related to aggressive care. Participants’ nursing experience ranged from 1 to more than 25 years. Seven participants had between 1 and 5 years, three had between 5 and 10 years, one had between 10 and 20 years, and four had more than 20 years of experience. All were female. These nurses had worked in a variety of practice areas such as medical–surgical care, intensive care, emergency care, palliative care, reproductive medicine, and home and community healthcare with both children and adults. A critical narrative approach was used that asked these participants to describe clinical situations in which they had cared for patients who received aggressive medical treatment that they believed to be unnecessary. We deliberately did not define ‘‘aggressive’’ care in order to draw from the nurses what their perspectives were. After obtaining informed consent, their narratives were audio-recorded and transcribed. On average, participants provided 2.6 narratives with a range of 0–6 narratives. Narratives have been defined in the human sciences as ‘‘discourses with a clear sequential order that connects events in a meaningful way for a definite audience and thus offer insights about the world and/or people’s experiences of it’’ (p. xvi).15 As such, narrative approaches recognize temporality by acknowledging that events and narrators and their stories are influenced by and understood in terms of the past, present, and future.16 We used Labov’s17 delineation of six narrative elements—an abstract, orientation, complicating action, evaluation, resolution, and a coda to isolate bounded segments of interviews as individual narratives. One participant who was interviewed did not provide a description of an incident that contained the necessary elements despite prompts by the interviewer. Therefore, no relevant data from this participant were obtained for this aspect of the study. Riessman’s18 narrative thematic analysis approach was used to analyze the data. Narratives were kept intact and interpreted as a whole to identify a typology of moral knowledge. This approach is holistic in nature because it takes whole stories and contextualizes them socially in an attempt to ascertain overall patterns and guiding metaphors.19,20 This approach recognizes the importance of using theory as a resource for the interpretation of narratives as a means to identify significant social factors.18 2


Peter et al.

3

In this study, Walker’s13,14 meta-ethical perspective, which has been used in other critical narrative research,21,22 informed the analysis of the narratives. As a feminist theory of ethics, it rests on assumptions common to critical approaches, including a recognition that power relations mediate thought and knowledge, that facts and values cannot be separated, and that some societal groups are privileged over others, resulting in the subordination of other groups based on a wide range of factors, including race, class, and gender.23 Walker13,14 describes how the way work is divided in society establishes how moral responsibilities are understood and shared by differently situated people. These responsibilities define the scope of their agency, inform their identities and what they value, and determine who has accountability and who has the authority to judge. These moral responsibilities are comprehended and sustained through narrative understandings that form people’s sense of relationships, moral identity, and moral values. The social arrangements that structure these moral responsibilities must be made transparent to ensure that differently situated people find their responsibilities comprehensible and coherent and that they foster recognition, cooperation, and the sharing of societal goods by all involved. In short, ‘‘transparency testing’’ must occur so that social arrangements are examined to ensure that they are morally inhabitable.13 An approach rooted in Walker’s work makes it possible to ground a narrative approach to nursing ethics with a robust moral epistemology. By going beyond the narrow boundaries of mainstream scientific approaches, this methodology opens up new ways in which moral knowledge can be developed, expressed, and made transparent in narratives. Just as morality is not socially modular, neither is any kind of healthcare work. This approach opens up how we are interconnected and accountable to each other as healthcare workers, patients, and families and helps describe nurses’ understanding of moral responsibilities, which is an often taken-for-granted and unarticulated form of knowledge. It also helps us evaluate whether the tacit social arrangements that constitute the work of healthcare create the conditions necessary for people to thrive.24 As in Robichaux and Clark’s5 narrative study of critical care nurses, the narratives were analyzed in an iterative process that involved moving back and forth from the elements within the narratives to the whole of the narrative and then across narratives to establish a typology of narrative themes. Each narrative was read multiple times and then was initially given a tentative thematic name that reflected the narrator’s moral knowledge embedded within the narrative. These thematic names were compared across narratives and were discussed by the research team until four types of narratives were firmly identified. While elements of multiple narrative types often appeared within narrative, it was the dominant theme of each that was used in the creation of the typology. To ensure methodological ‘‘fit’’ or internal fit validity, we ensured that the theoretical assumptions, research question, and method of data collection and analysis were congruent.25 The creation of an audit trail assisted us in this effort.

Results The four narrative types that the participants presented reflected their moral understandings of the profound impact that modern medical advances had on negotiating responsibilities for caring for and medically treating patients, especially with respect to dying and death, and in the case of one participant, conception. These innovations have developed at such a rapid rate that the characters in the narratives, particularly nurses, physicians, and families, displayed much uncertainty as they negotiated their moral responsibilities. The moral distress experienced in relation to aggressive care may be an expression of the lack of moral inhabitability inherent in the moral–social arrangements that structure ‘‘aggressive’’ interventions.

Wait and see: medical uncertainty An awareness of the lack of certainty with respect to prognosis and the limits of medical knowledge was central to the first narrative type in which four of the narratives were classified. Time played a central role 3


4

Nursing Ethics

in the acquisition of this knowledge and was often required to determine whether an intervention or course of treatment would be effective or should be withdrawn or withheld. Participant 1 told a story of a young man with advanced cancer who was expressing the desire to die, but was convinced to accept intubation for a couple of days to see whether another round of chemotherapy would prolong his survival. She stated, And then the residents and physicians start saying, well you know, we’re going have to see, we’re going to have to see. He’s responsive. Maybe there’s hope. But the sad thing was that this guy was told and given the assurance that it was only going to be a couple of days. And in fact if he had been allowed to die, it would certainly have lessened the amount of agony he would have gone through . . . That it still had to be drawn out for another three weeks before this guy can say, please let me go to the angels.

This participant’s efforts to convince the physicians to stop treatment did not succeed because their hope was to wait and see whether the treatment would improve the patient’s condition. The lack of medical certainty regarding the effectiveness of the treatment increased the time needed for the patient to die. Participant 7 provided a narrative about a patient who after a serious heart attack had been on a ventilator for over 12 days. Because she was not weaning properly, a decision was made to stop treatment. Surprisingly, after she was taken off the ventilator, she started to breathe on her own which led to the family questioning the knowledge of the team. Participant 7 describes this in the following: The family, before they took her off the ventilator, the family was actually okay with the fact of her passing and everything like that. And after the ventilator came off and they saw her fighting, they changed their mind and they wanted us to pursue aggressive treatment and um, she actually had a shower, um, how do they, what do they call it? Like . . . showered, they call it showered, like stroke, where she wasn’t really functional. I mean the doctors and nurses they didn’t want to pursue treatment. The family was actually questioning the knowledge of the doctors and the nurses on the unit. Because the doctors and nurses said she probably wouldn’t make it through so take her off the ventilator, like the last step. And when she actually pulled through, they were questioning the knowledge and they were pursuing aggressive treatment.

While initially trusting the judgment of the team, the family began to doubt the team’s knowledge and the accuracy of the patient’s prognosis when the patient was able to breathe independently. In the end, additional aggressive treatment was given, and the condition of the patient further deteriorated because of a stroke. She was then re-intubated and sent to another unit so the participant was unaware of how long the treatment continued. The uncertainty surrounding medical knowledge may have come as a surprise to this family and may have been viewed as the incompetence, real or not, of the team. In any event, the family’s perception led to further aggressive care being given.

Deflected responsibilities to respond to dying, death, or futility Of the 39 narratives, 11 were related to this theme that represents the deflection of the nurses’, physicians’, or team’s responsibility to respond to dying, death, or futility by their failure to communicate with patients and families or by their exclusive focus on cure that precluded the acknowledgement of dying, death, or futility. The nurse participants recognized the importance of responding, but pointed to the frequency with which either the whole team or individual physicians or nurses, including themselves, had great difficulty with this responsibility. Underlying this theme may be a lack of competence on behalf of clinicians to communicate comfortably. Participant 3 described a situation in which a man in his 80s had cancer with metastases to his lungs whose family wanted surgery and full code status for him. The nurses had difficulty with this plan, but many 4


Peter et al.

5

found it difficult to approach the family to discuss the condition of the patient. Instead, communication was ‘‘delegated’’ to one nurse in the unit who had the skill. This ‘‘delegation’’ to the experienced and skilled nurse to talk about dying and death was present in a number of the narratives. This participant articulated this practice well when she said, Like there are some senior nurses who are more comfortable talking to the family because I guess they have more life experience. They say your mom’s doing this and is not doing that well. Like if she takes the treatment, it’s going to take a toll on her body and she’s going to suffer. Like that, even talking about code status. They were bringing that up. Like, I find the more novice nurses so far, like from where I work, and the doctors really suck at that. They aren’t very good at talking about code status or painting the family a real picture of what might happen. This is what your family member may go through . . . We have a nurse. She’s a staff nurse. She has that influential power. Everyone looks up to her. She has a way of talking to the family that makes them feel she really does care.

In this narrative, the experienced nurse eventually did speak with the patient and family, and they decided against the surgery and opted for palliative chemotherapy instead. While in the end, overly aggressive care was avoided, this process took time, in part because so few of the nurses had the competence to have end-of-life discussions with the patient and family. Participant 8, an experienced neonatology nurse, described a story that involved a conversation with a mother of a severely brain-damaged infant that highlights how difficult these discussions can be. She said, I was caring for him as one of his core nurses and his mom and I had a middle of the night discussion because that’s when you can actually have them, as opposed to when everyone’s running around the unit. And she said to me at one point, she said am I doing the right thing? She said I want him to be alive. I want to be his mother forever, but I wonder. Am I doing the right thing? And I said are you really asking me that question, because you might not like what I have to say . . . And she said yeah, I think I do. We’ve talked a lot about how it might be like when they go home and she’s like I don’t know if he’s ever going to make it. And I said I have a feeling you’re right. I don’t think he’ll make it either.

In this narrative, Participant 8 provides some insight into some of the fears nurses have that might underlie their avoidance of these difficult discussions. She alludes to the busyness of the unit, the potential impact of her honesty on the mother, and the difficulty she would have had as a junior nurse questioning the judgment of physicians. These factors are not unique and underscore the challenges nurses may encounter in ascertaining and fulfilling their moral responsibilities in responding to the families of dying patients receiving aggressive care. Physicians also deflect their responsibilities with respect to the need to respond to the dying of their patients. Participant 12 presented a narrative in which the mother of a dying young woman with breast cancer wanted her daughter’s chemotherapy to be continued because she did not realize the limits or impact of further treatment: I think she expected her daughter to get well, obviously get better, to wake up, to be back to the way she was, have the chest tubes out, um, be up walking around, off the cath pump. Like, I think her expectations were quite high . . . It’s really hard though because you know, with the physicians like it’s hard to have the conversation, don’t you think, you know, to say, we’re not going to try anything anymore. I’m not a physician, but I would imagine it would be really, really challenging . . . I think it was the doctor, the oncologist, just wanting to appease the mom. Make them feel like they’re doing something even though there’s nothing left to have done per se.

This patient needed to be resuscitated during a chemotherapy infusion and died soon after. The participant regretted that the patient died in this manner and wished that better palliative care had been given. This may have been possible with better communication regarding the futility of further treatment. 5


6

Nursing Ethics

It is important for physicians to acknowledge not only the futility of aggressive measures at the end of life but also at the beginning of life. Participant 10, a nurse working in the area of reproductive medicine, told a story of a woman in her 40s who was attempting for the third time to have eggs retrieved for in vitro fertilization and the physical, emotional, and financial hardships she experienced. In the following quote, she describes the responsibilities of physicians in particular: I think the physician has the duty to say when it’s no longer going to be effective. You know, when it’s sort of, futile almost because then it really is inappropriate to put someone on it. It’s like um, you know there’s only one per cent chance that the heart transplant is going to be successful. Is it appropriate to, to give that person a heart transplant?

Divergent understandings, responsibilities, and temporalities This narrative type, of which 15 were classified, represents the conflicts that were often present. Participants knew they were the result of different beliefs surrounding what should be done for patients, depending on the social location of those involved, the varying quantities of time needed to come to recognize that death was inevitable, or differing perceptions of the extent to which patients should be held accountable for their use of extensive resources. Participant 13 described a situation in which the family of a woman in her 80s insisted that ‘‘everything’’ be done, relating a common understanding of family responsibility found in the narratives. She said, She was really demented and contracted and trached, and any interventions were cruel and futile. I think it went through the courts and I’m not sure what the end decision was, but I know that she ended up passing away. But the lawyers were involved and it was interesting just again someone in her 80s and the family wanted everything done, despite the fact that it wasn’t really going to do anything, anything good at all.

The team in this narrative wanted to stop all aggressive care, but the family, with their understanding of familial responsibility, insisted that she continue to be treated in such a manner. In other narratives, conflict arose when families decided to continue aggressive care because they believed that other measures such as Eastern remedies (Participant 15) and God’s power (Participants 8 and 11) would eventually heal their family member even if allopathic medicine could not. Divergent understanding among patients, families, and their clinicians regarding the availability and meaning of palliative care also led to continued curative treatment. Participant 6 told a story of a man in his late 60s with advanced cancer who refused to have a do-not-resuscitate (DNR) order written because of the beliefs he and his family had. She stated, He won’t sign a DNR, because his, it seems that his relatives, perhaps he doesn’t understand what that means. We tried to explain it doesn’t mean we are going to drop all your medications if you sign it . . . He, um, he won’t sign it cause I suppose he thinks we’re just going to give up.

Families often required time to accept the inevitability of death and to make sense of their possible moral responsibilities in relation to their dying loved one. For example, Participant 9 described a woman in her early 40s who had only a month earlier been diagnosed with terminal cancer. This participant said, She went to respiratory failure and um, cardiogenic shock and was intubated and on life support and knowing that the outcome for her disease was unfortunately was going to be death right. So even through with all of the potential management, it was just I think in this case maybe it was appropriate to allow as much time as needed because it was such a new diagnosis and she was diagnosed in June and died in July. First week of July, so it was like three weeks or less. And came to us, you know, four days and died within the four days. So I think it was necessary to be 6


Peter et al.

7

a little more aggressive in her case because I think that the husband needed time. They all sort of needed time to come to terms with the actual diagnosis and how to manage their family and what to do with the, you know, what kind of resources they needed. So in that case, it’s very difficult, but I think it was appropriate to provide aggressive management for the interim.

The inseparability between the husband’s and the patient’s needs are illustrated well in this example because in a sense, the aggressive care was for him and not for her. While this nurse found this situation ‘‘very difficult,’’ in the end, she believed it was appropriate because of her recognition that the entire family had needs that could only be met with a sufficient time for them to accept the death of the patient. Participant 4 had a unique perspective regarding conflicts between patients and clinicians. In her narratives, she spoke of the importance of patients taking responsibility for their consumption of healthcare resources. In one narrative, she described a patient with alcoholism, who had received a liver transplant that his body eventually rejected. She said, He didn’t make it. He made it about three months, but he didn’t really take his medication and his liver got rejected at the end. So I was like . . . yeah. I was very, very mad. That liver could have gone to somebody else.

Unlike other participants, Participant 4’s distress was a result of her identification of the potential suffering for patients not under care, in this case, those waiting for an organ, as opposed to the patient in front of her.

Privileged medical understandings and responsibilities A total of 10 narratives were of this type, which concerns the dominance of medicine with its emphasis on cure and its relative power over nurses and patients. Participants believed this led to the prolongation of aggressive care. Participant 5 described a situation in which she attempted to stop the continued medical treatment of an aged man in an emergency room who had arrested a number of times and whose ribs were breaking as a result of cardiopulmonary resuscitation (CPR). She said, This doctor would insist in putting in a jugular line, putting in an arterial, pumping him up with inotropes. He would insist on that. And, all of us mumbling, saying this is not right, he should let him die. And I approached the doctor and I told him listen, doctor I don’t think that we should. I don’t think this is right for this patient. He’s going to die. Why can’t you let him die in peace? And boy, there was an uproar. He attacked me personally. He said I didn’t have the knowledge.

This narrative represents the traditional privileging of medical knowledge over nursing knowledge. Despite this nurse’s judgment that this patient would die even with intervention, the physician carried on believing his own knowledge to be superior to hers. In this case, the aggressive care continued to be administered until the patient was eventually declared dead. Participant 9 also provided a narrative in which medical dominance led to the distress of nurses and families. In the narrative, this participant described a man with multi-comorbidities who was admitted following a cardiac arrest. After 48 h, the team and the family determined that treatment would be withdrawn given the results of various tests, including a computed tomography (CT) scan. However, when a new physician took over the care of the patient, the plan was changed. She described the situation in the following manner: New physician on decides, well you know, some bleeds actually do better. We should give him three or four weeks and determine that. He had actually called them for a family meeting and they were at the funeral home making arrangements. So they were quite distressed about the whole thing because they wondered why the rest of us didn’t tell them . . . It was just distressing for the staff for the family, knowing he had called them or had the 7


8

Nursing Ethics nurse call and they were at the funeral home making arrangements. He ended up dying a week later, but it was a whole extra week that they went through sitting in the ICU with him, trying to understand if there was hope.

The power of the medical management over disease also was found to influence the capacity of clinicians to accept that someone might prefer death over aggressive treatment. Participant 2 recalled a situation of a woman in her 50s with leukemia being treated as an outpatient who refused all treatment except platelets and blood. The participant said, There was a patient that wanted no treatment whatsoever, and the reaction of the some of the staff gave her, I was shocked. I was shocked that it would happen. It felt that people wouldn’t, couldn’t, be bothered to give her the time anymore, because she wasn’t compliant. And she just said like no to treatment, no to induction, no to everything. She’s just was going to have platelets and blood. She didn’t even have antibiotics. Like, with the leukemic population they are slammed with antibiotics all the time, like nothing. She had a fever with me and, and I was like, I had to give her a script for antibiotics, knowing full well that she wasn’t going to get them filled and take them . . . She said that she was going to die anyway.

This situation describes a woman who has accepted death, but a healthcare team who cannot respond to her except as a person requiring a ‘‘cure’’ and as a result, considers her to be noncompliant. While aggressive care is not given, the narrative points to the types of conditions that make it difficult for patients to refuse this kind of treatment given the dominance of medical understandings.

Discussion The narratives of the nurse participants represent a form of transparency testing13 of the social arrangements that generate aggressive care for patients in that they uncover some of the conflicts that exist in the judgments and responsibilities among those involved. The focus of most of the narratives concerned the moral negotiations of patients, families, nurses, and physicians, as they worked through the complexities of care for dying patients, which is consistent with previous studies.4,6,26 These negotiations represent what Walker14 refers to as ‘‘a disposition of powers through an arrangement of responsibilities’’ (p. 106) in that morality itself requires many social powers. While most of the nurses presented narratives in which they ‘‘knew’’ that withdrawing or not initiating aggressive care was the right thing to do, their narratives also reveal some of the complexities inherent in these negotiations and why constraints resulting in moral distress exist. In particular, their narratives made it evident that the knowledge of differentially situated persons is acknowledged and acted on in dissimilar ways, that the time required to determine that enough has been done is perceived differently, and that moral responsibilities also vary depending on the social location of the people involved. The dominance of biomedical knowledge was woven through the narratives, even though this knowledge was often uncertain and led to questions regarding the efficacy of interventions and the accuracy of prognoses. In part, physicians’ power in initiating and continuing with aggressive care and the conflict with nurses were the result of physicians using privileged biomedical knowledge more than nurses did. SteinParbury and Liaschenko27 also demonstrated that difficulties in the relationships between physicians and nurses are not only the result of the traditional barriers within hierarchical structures but are also the result of the privileging of some forms of knowledge over others. Fricker28 and Walker13 describe the epistemic injustices that can occur when the knowledge of others is not trusted on the basis of their perceived identity or their membership in a particular group, such as some of the participants whose knowledge was discounted by physicians because they were nurses. In turn, this lack of respect led in several cases to the continuation of aggressive care. A similar lack of trust can also arise when clinicians, including nurses, discount the perspectives of their patients. Patients enter into relationships with clinicians with their own knowledge 8


Peter et al.

9

that could include knowledge of their own bodies along with perspectives coming from their religious and cultural beliefs that have great relevance for care,29 including decisions regarding the continuation of aggressive care. Time and responsibility were also deeply intertwined in the narratives. The time needed to declare that aggressive care was no longer needed, and in most cases that death was inevitable, was highly variable depending on the social positioning of those involved and the perception of their moral responsibilities to the patient. This observation is consistent with May and Thrift’s30 perspective that time is experienced socially in multiple ways. It also illustrates well how moral responsibilities and practices are not merely abstract and hypothetical but are recognized and carried out in real time and space, reflecting Walker’s13 contention that the core of moral knowledge is not timeless and contextless but is located in real time and social spaces. As in previous research,5,31–33 conflicts often resulted when the timing and varying perspectives of what needed to be done next did not correspond. This finding is not surprising given that ethical decision making in clinical settings consists of an accumulation of many micro-ethical events that are embedded in complex interactions with people with varying value systems.34 In general terms, families needed the most time to decide that enough aggressive care had been given, which may have been the result of their relative lack of experience in witnessing the effects of such care and their sense of moral responsibility as that of needing to ‘‘do everything’’ before giving up. These findings are consistent with Meeker and Jezewski’s35 meta-synthesis, which concluded that families require time to engage in a complex process of ‘‘reframing reality,’’ as they come to realize that interventions are not effective and that their loved one is dying. Aggressive care such as CPR may symbolize to families that indeed every measure has been taken to sustain the life of their loved one.36 Because responsibilities are situated within ‘‘narratives of relationships’’ (p. 111),13 the needs of family cannot be easily disentangled from those of patients resulting in ‘‘extra’’ time needed for family to come to terms with a patient’s death, making the treatment not so much for the needs of the patient, but instead for those of the family. Physicians’ primary responsibility is to cure the diseases of their patients and to maintain life. In Walker’s13 terms, this responsibility is central to understanding physician’s moral identity, values, and relationships. Like the findings of Gutierrez,37 physicians’ use of time was focused on the need to wait and see for a time if an intervention would work before confirming a negative prognosis and stopping treatment. Their more episodic contact with patients, in comparison with that of nurses, may help forestall the distress that can occur when spending prolonged periods of time in close proximity to suffering patients.38 It has also been speculated that interventions such as CPR help dissipate the responsibility of death away from individual clinicians to the whole social network of clinicians who function in well-defined roles when delivering these interventions to make death socially acceptable in medical contexts.39 Because physicians bear the greatest responsibility in deciding when aggressive care should be withdrawn, the slower withdrawal of treatment and team-oriented interventions, such as CPR, may ease the burden of this responsibility. Nurses, in contrast, were often the first to identify the point at which aggressive care needed to be withdrawn, which is also consistent with previous research.5,32,33 The timing of nurses’ recognition is deeply intertwined with their understanding of their moral responsibilities and social role. Nurses’ sustained and proximate contact with patients may acutely sensitize them to the suffering of patients38 and may lead to a more pronounced perception of waiting for them and the resultant moral distress. Nurses also have less responsibility than physicians to make final decisions or recommendations regarding treatment which may make them less cautious when suggesting that treatment is no longer required. Despite differences found between nurses’ and physicians’ responsibilities, many from both groups unfortunately share common difficulties communicating with patients and families when aggressive care is no longer effective. It may be that the cure-oriented nature of their work settings made it difficult for these clinicians to find opportunities to have these conversations, and more important, to develop the moral competencies needed to do so. There has been much speculation as to why these difficulties exist, particularly 9


10

Nursing Ethics

when they involve dying and death, including death anxiety,40 the reluctance of patients and families to have these discussions,41 and the desire to maintain the hope of families and patients.42 Ultimately, the deflection of the responsibility to have these conversations led to a continuation of aggressive care and the experience of moral distress. In other words, many of the nurses ‘‘knew’’ what the right thing to do was, but the constraints of fear, lack of skill, and the cure-orientation of their work environments constrained them from acting on their knowledge.

Limitations A number of limitations are inherent in this study. To begin with, all of the participants were well-educated female nurses enrolled in graduate studies at one university, which limits the representativeness of the sample. Although generalizations cannot be made from this sample, a critical narrative approach provided a way to understand the complexities of particular relationships, interactions, and practices.43 Narratives that arise from this type of research, therefore, are partial, situated, and provisional rather than universal or absolute.13 Narratives, unlike ethnographies, cannot fully capture the broader social organization of social life. With a narrative approach, there is a risk of completely identifying social life with its accounts and the particularities of storytelling.44 Another limitation of this approach is that the choices we made as researchers may be biased about which stories constitute the most valuable account,45 as a result of our own values and life experiences. To mitigate this possible limitation, reflexivity was ongoing, as we examined our own assumptions that might have influenced the interpretation of the data.

Conclusion The nature of nurses’ moral knowledge in situations of perceived overly aggressive care was multifaceted and shaped by their roles. The narratives revealed more than their recognition of when aggressive care should be stopped. They also brought understanding to how this knowledge is shaped by nurses’ responsibilities and how these often conflict with the responsibilities of those around them. Because the responsibilities of all involved occurred in real time and space, it was evident that different perceptions of the trustworthiness of various forms of knowledge and of how long an intervention should be tried existed. Less moral distress and conflict in these situations could be possible if there was a better understanding of all involved of how social roles influence how time, knowledge, and responsibility are related to the initiation and withdrawal of aggressive care. Conflict of interest No conflicts of interest were present. Funding This research was funded by the Bertha Rosenstadt Small Research Grant. References 1. Jameton A. Nursing practice: the ethical issues. Englewood Cliffs, NJ: Prentice Hall, 1984. 2. Gutierrez KM. Critical care nurses’ perceptions of and response to moral distress. Dimens Crit Care Nurs 2005; 24(5): 229–241. 3. Ka¨lvemark S, Ho¨glund AT, Hansson MG, et al. Living with conflicts – ethical dilemmas and moral distress in the health care system. Soc Sci Med 2004; 58: 1075–1084. 4. Huffman DM and Rittenmeyer L. How professional nurses working in hospital environments experience moral distress: a systematic review. Crit Care Nurs Clin North Am 2012; 24: 91–100. 10


Peter et al.

11

5. Robichaux CM and Clark AP. Practice of expert critical care nurses in situations of prognostic conflict at the end of the end. Am J Crit Care 2006; 15(5): 480–489. 6. Varcoe C, Pauly B, Storch J, et al. Nurses’ perceptions of and responses to morally distressing situations. Nurs Ethics 2012; 19: 488–500. 7. Dancy J. Moral epistemology. In: Dancy J and Sosa E (eds) A companion to epistemology. Oxford: Blackwell, 1992, pp. 286–291. 8. Carper B. Fundamental patterns of knowing in nursing. Adv Nurs Sci 1978; 1(1): 13–23. 9. Benner B. The role of experience, narrative and community in skilled ethical comportment. ANS Adv Nurs Sci 1991; 14(2): 1–21. 10. Benner B, Sutphen M and Leonard D. Educating nurses: a call for radical transformation. San Francisco, CA: Jossey-Bass, 2010. 11. Varcoe C, Doane G, Rodney P, et al. Ethical practice in nursing: working the in-betweens. J Adv Nurs 2004; 45(3): 316–325. 12. Liaschenko J, Peden-McAlpine C and Andrews GJ. Institutional geographies in dying: nurses’ actions and observations on dying spaces inside and outside intensive care units. Health Place 2011; 17: 814–821. 13. Walker M. Moral understandings: a feminist study in ethics. New York: Routledge, 1998. 14. Walker M. Moral contexts. Oxford: Rowman & Littlefield Publishers, Inc., 2003. 15. Hinchman LP and Hinchman SK. Introduction. In: Hinchman SK (ed.) Memory, identity, community: the idea of narrative in the human sciences. New York: University of New York Press, 1997, pp. xiii–xxxii. 16. Clandinin DJ and Connelly FM. Narrative inquiry: experience and story in qualitative research. San Francisco, CA: Jossey-Bass, 2000. 17. Labov W. Some further steps in narrative analysis. J Narrat Life Hist 1997; 27: 1–17. 18. Riessman CK. Narrative methods for the human sciences. Thousand Oaks, CA: Sage, 2008. 19. Bleakley A. Stories as data, data as stories: making sense of narrative inquiry in clinical education. Med Educ 2005; 39: 534–540. 20. Lieblich A, Tuval-Mashiach and Zilber T. Narrative research: reading, analysis, and interpretation. London: Sage, 1998. 21. Peter E and Martin K. A narrative approach to empirical nursing ethics research: uncovering the everyday moral knowledge of nurses. Texto & Contexto Enfermagem (Text & Context Nursing) 2007; 16(4): 746–752. 22. Simmonds A, Peter E, Hodnett E, et al. Understanding the moral nature of intrapartum nursing. J Obstet Gynecol Neonatal Nurs 2013; 42(2): 148–156. 23. Guba EG and Lincoln YS. Paradigmatic controversies, contradictions, and emerging confluences. In: Denzin NK and Lincoln Y (eds) The landscape of qualitative research: theories and issues. London: Sage, 1998, pp. 255–286. 24. Chase SE. Narrative inquiry: multiple lenses, approaches, voices. In: Denzin NK and Lincoln YS (eds) The Sage handbook of qualitative research. Thousand Oaks, CA: Sage, 2005, pp. 651–677. 25. Angen M. Evaluating interpretive inquiry: reviewing the validity debate and opening the dialogue. Qual Health Res 2000; 10(3): 378–395. 26. Edwards MP, Throndson K and Dyck F. Critical care nurses’ perceptions of their roles in family-team conflicts related to treatment plans. Can J Nurs Res 2012; 44(1): 61–75. 27. Stein-Parbury J and Liaschenko J. Understanding collaboration between nurses and physicians as knowledge at work. Am J Crit Care 2007; 16(5): 470–477. 28. Fricker M. Epistemic injustice: power and the ethics of knowing. Oxford: Oxford University Press, 2007. 29. Peter E. Evidence-based healthcare: whose knowledge can we trust? In: Eichler M, Larkin J and Neysmith S (eds) Feminist Utopias. Toronto, ON, Canada: Inanna Publications and Education Inc., 2002, pp. 167–177. 30. May J and Thrift N. Timespace: geographies of temporality. London: Routledge, 2001. 31. Azoulay E, Timsit JF, Sprung CL, et al. Prevalence and factors of intensive care unit conflicts: the conflicus study. Am J Respir Crit Care Med 2009; 180(9): 853–860. 11


12

Nursing Ethics

32. Jensen HI, Ammentorp J, Johannessen H, et al. Challenges in end-of-life decisions in the intensive care unit: an ethical perspective. J Bioeth Inq 2013; 10: 93–101. 33. Heland M. Fruitful or futile: intensive care nurses’ experiences and perceptions of medical futility. Aust Crit Care 2006; 19(1): 25–31. 34. Komesaroff PA. From bioethics to microethics: ethical debate and clinical medicine. In: Komesaroff PA (ed.) Troubled bodies: critical perspectives on postmodernism, medical ethics, and the body. London: Duke University Press, 1995, pp. 60–86. 35. Meeker MA and Jezewski MA. Metasynthesis: withdrawing life-sustaining treatments: the experience of family decision-makers. J Clin Nurs 2008; 18: 163–173. 36. Mohammed S and Peter E. Rituals, death, and the moral practice of medical futility. Nurs Ethics 2009; 16(3): 292–302. 37. Gutierrez KM. Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end-of-life in an intensive care unit. Nurs Inq. Epub ahead of print 1 June 2012. DOI: 10.1111/j.1440-1800.2012.00604.x. 38. Peter E and Liaschenko J. Perils of proximity: a spatiotemporal analysis of moral distress and moral ambiguity. Nurs Inq 2004; 11(4): 218–225. 39. Timmermans S. Death brokering: constructing culturally appropriate deaths. Sociol Health Illn 2005; 10: 993–1013. 40. Peters L, Cant R, Payne S, et al. How death anxiety impacts nurses’ caring for patients at the end of life: a review of literature. Open Nurs J 2013; 7: 14–21. 41. Zhou G, Stolzfus JC, Houldin AD, et al. Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncol Nurs Forum 2010; 37(6): E400–E410. 42. Schulman-Green D, McCorkle R, Cherlin E, et al. Nurses’ communication of prognosis and implications for hospice referral: a study of nurses caring for terminally ill hospitalized patients. Am J Crit Care 2005; 14(1): 64–70. 43. Pinnegar S and Daynes J. Locating narrative inquiry historically. In: Clandinin DJ (ed.) Handbook of narrative inquiry: mapping a methodology. Thousand Oaks, CA: Sage, 2007, pp. 1–34. 44. Gubrium J and Holstein J. At the border of narrative and ethnography. J Contemp Ethnogr 1999; 28(5): 561–573. 45. Kitzenger C. Feminist approaches. In: Seale C, Gobo G, Gubrium J, et al. (eds) Qualitative research practice. London: Sage, 2007, pp. 113–128.

12
