Article

Moral distress in the resuscitation of extremely premature infants

Nursing Ethics 2015, Vol. 22(1) 52–63 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014523169 nej.sagepub.com

Jennifer Molloy London Health Sciences Centre, London, ON, Canada

Marilyn Evans School of Nursing, Faculty of Health Sciences, University of Western Ontario, London, ON, Canada

Kevin Coughlin Division of Neonatal-Perinatal Medicine, Department of Paediatrics, University of Western Ontario, London, ON, Canada

Abstract Objective: To increase our understanding of moral distress experienced by neonatal registered nurses when directly or indirectly involved in the decision-making process of resuscitating infants who are born extremely premature. Design: A secondary qualitative analysis was conducted on a portion of the data collected from an earlier study which explored the ethical decision-making process among health professionals and parents concerning resuscitation of extremely premature infants. Setting: A regional, tertiary academic referral hospital in Ontario offering a perinatal program. Participants: A total of 15 registered nurses were directly or indirectly involved in the resuscitation of extremely premature infants. Methods: Interview transcripts of nurses from the original study were purposefully selected from the original 42 transcripts of health professionals. Inductive content analysis was conducted to identify themes describing factors and situations contributing to moral distress experienced by nurses regarding resuscitation of extremely premature infants. Ethical considerations: Ethical approval was obtained from the research ethics review board for both the initial study and this secondary data analysis. Results: Five themes, uncertainty, questioning of informed consent, differing perspectives, perceptions of harm and suffering, and being with the family, contribute to the moral distress felt by nurses when exposed to neonatal resuscitation of extremely premature infants. An interesting finding was the nurses’ perceived lack of power and influence in the neonatal resuscitation decision-making process. Conclusion: Moral distress continues to be a significant issue for nursing practice, particularly among neonatal nurses. Strategies are needed to help mediate the moral distress experienced by nurses, such as debriefing sessions, effective communication, role clarification, and interprofessional education and collaboration. Keywords Ethical decision making, extremely premature infants, moral distress, neonatal nursing

Corresponding author: Jennifer Molloy. Email: [email protected]

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Introduction Moral distress, a significant issue for the nursing profession, occurs when a person is unable to act on his or her ethical choices and/or when system constraints interfere with acting the way one believes to be right.1 Moral distress can be a result of factors internal to the individual, clinical situations or treatment regimes and factors present in unit cultures, institutions, and the larger healthcare environment.2 A plethora of evidence indicates moral distress often results in negative consequences for healthcare professionals (HCP) and can have adverse effects on their physical and psychological health.3,4 Moral distress is associated with anxiety, depression, loss of self-worth, powerlessness, compassion fatigue, burnout, job dissatisfaction, and behavioral manifestations.5–8 Moral residue, identified to be a consequence of moral distress, is the lingering distress that accompanies situations when people compromise their basic values and principles.9 Neonatal nurses are at an increased risk of experiencing the negative consequences of moral distress due to the abundance of morally and ethically challenging situations.10 Although technological advances in perinatal–neonatal medicine have increased the survival rate of premature infants, there continues to be a significant risk of long-term morbidities, especially at the extremes of prematurity.11,12 The resuscitation of extremely premature infants is associated with uncertainty and may leave healthcare providers questioning whether the benefits of resuscitation outweigh the risks concerning long-term health outcomes and impact on the quality of life experienced by the infants and families. It is not surprising, therefore, that decisions to resuscitate, or not, at the extremes of prematurity create moral and ethical concerns for neonatal nurses and other HCPs and an environment rife for the development of moral distress and moral residue. Neonatal nurses are the frontline caregivers in the neonatal intensive care unit (NICU) but little is known about their involvement in the resuscitation decision-making process at the extremes of prematurity and how it might contribute to their experience of moral distress. Viability of the fetus is an important concept in neonatal–perinatal medicine as it indicates a clinically feasible and ethically acceptable age range for the resuscitation of extremely premature infants.13 The margins of viability are generally considered as between 22 weeks and 0 days and 24 weeks and 6 days of gestation.14 This period involves the critical phase of pulmonary development and presents an ethical gray zone where recommendations suggest neonatal resuscitation decision making be conducted on an individual basis and according to parents’ wishes.14 Although there are laws15 and professional guidelines16–19 to help inform practice, the resuscitation of extremely premature infants remains a complex process with no universally agreed upon approach.

Purpose The purpose of this secondary analysis was to enhance our understanding of moral distress experienced by neonatal nurses, directly or indirectly, involved in the decision-making process of resuscitating infants at the extremes of prematurity by addressing the following research question: what factors are associated with moral distress in neonatal nurses experiencing the decision-making process of resuscitating infants at the extremes of prematurity? For the purpose of this study, the extremes of prematurity are defined as birth between 22 weeks and 0 days and 25 weeks and 6 days gestation.

Methodology Study design This was a qualitative secondary analysis20 of data obtained from an earlier study21 which explored the ethical decision-making process undertaken by HCPs and parents regarding neonatal resuscitation at the 53

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extremes of prematurity. The specific type of secondary analysis used for this study was a supplementary analysis. A supplementary analysis involves a more in-depth focus on an emergent issue or aspect of data which was not addressed or only partially addressed in the primary research.20 A grounded theory methodology, as described by Corbin and Strauss,22 was used in the original study. Participants for the original study were recruited using purposeful and theoretical sampling techniques. A total of 42 healthcare professionals, including physicians, respiratory therapists, nurses, social workers, and physiotherapists, employed within the perinatology program at a regional, academic referral Canadian hospital participated in semistructured, individual interviews, and focus groups. Each interview was transcribed verbatim and assessed for accuracy. The data from the primary study provided rich in-depth description regarding how ethical decisions regarding resuscitation at extremes of prematurity are made, as well as the impact of those decisions from the perception of the HCPs. Consequently, it was considered valid to re-examine the data and explore moral distress among nurses involved in the neonatal resuscitation decision-making process, as a specific subset of the population.23 This subgroup was further examined as nurses are frontline workers and they represent the largest number within the healthcare team. Nurses in the primary study reported lack of role clarity and involvement warranting further exploration regarding their experience of moral distress.

Sample As the focus of this study was on moral distress experienced by neonatal nurses, we purposefully selected the transcripts, both individual interviews and focus groups, of all the nurses (n ¼ 15) who were involved in the original study. All participants were female and working in the study setting at the time of recruitment. Years of neonatal nursing experience ranged from 20 to 30 years with average of 24.8 years.

Data analysis Conventional content analysis was used to identify pattern and themes emerging from the text data.24 Each transcript was re-read several times by the first author to get a sense of the whole. Using an inductive, iterative process, initial codes were created and then condensed and categorized until patterns and final themes emerged. The identification of codes, and subsequently, the development of final themes, was discussed and reviewed through meetings with the original research co-investigators. Discrepancies were discussed among the research members until consensus was achieved. Relevant quotes were chosen to reflect key points within each theme. Trustworthiness25,26 was determined through reflective memoing, an audit trail, and conformability through peer debriefing with the co-investigators of the original study.

Ethical considerations Ethical approval was obtained from the research ethics review board for both the initial study and this secondary data analysis.

Results The content analysis revealed five themes: uncertainty, questioning of informed consent, differing perspectives, perceptions of harm and suffering, and being with the family. Together these themes encompass factors contributing to the moral distress experienced by neonatal nurses impacted by the resuscitation of infants born at the extremes of prematurity. 54

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Uncertainty Many participants described struggling with the uncertainty of when it is morally acceptable to resuscitate an extremely premature infant or when to stop treatment once started. The nurses emphasized that the decision to resuscitate an extremely premature infant is difficult as no clear decision-making guidelines exist to help reduce the uncertainty. Participants described how multiple factors contribute to the uncertainty in decision making: Just because you shouldn’t, should you not? If this baby’s active and showing good fighting signs of life, but because you know, is weight the cut off, is gestation the cut off? I mean there are so many factors.

Not knowing the long-term outcomes of these infants was also of great concern. Participants described how it is difficult to predict if these infants will have future health conditions or disabilities: I think that’s what makes any decision at the end of life or decisions about resuscitation so troubling, we don’t have crystal balls.

Participants expressed concern about what this might mean for quality of life for the child and family.

Questioning of informed consent Participants identified the emotional state of parents and time constraints throughout the resuscitation decision-making process as significant barriers to reaching informed consent. Many nurses questioned parents’ ability to absorb the information presented to them and understand the long-term implications of potentially raising a disabled child when under a significant amount of emotional distress. One nurse described the information given to parents as very ‘‘overwhelming.’’ Another nurse expressed the difficulty of achieving informed consent during heightened stress: What we know about people who are stressed and, what they’re going through, I tend to think that part of what we need to discuss is the fact that at this point I don’t know if there’s really such a thing as informed consent. How can there be? I think about those moments in my life when I’ve been incredibly stressed, well, that was not the time to be making life and death decisions, but that’s what we’re asking them to do!

One nurse described putting the decision to withdraw or withhold treatment into the parents’ hands as ‘‘horrid.’’ Another nurse highlighted the frustration felt when the decision to discontinue life-sustaining interventions is left solely to the parents: I think that’s one of our biggest beefs is that we’re making the parents decide and when we know, if the physician is certain and most of the time they are, beyond a shadow of a doubt, that the baby is only being kept alive by everything that we’re doing and the outcome is going to be extremely poor, then I think they owe it to the parents to be able to say, I’m really sorry, we’ve done absolutely everything we possibly can.

Participants identified the sense of urgency as an additional barrier to obtaining informed consent as families are required to make immediate decisions about their infants without the opportunity to fully ‘‘internalize’’ the information presented to them. One nurse stated, It’s this sort of dump of information and now let’s make a choice, and if you could make a choice quickly, we’d appreciate it. 55

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The nurses expressed the need for HCPs to guide parents toward an informed decision by offering them recommendations: We tend to go to families with a recommendation. We tend to say this is what we’re seeing and this is what the therapies are and we think we should do this. But we don’t do that when it comes to the tough choices of to resuscitate or not resuscitate, we don’t go with a recommendation in general. And we avoid it like the plague, and I take a step back and wonder why is that?

Differing perspectives Several nurses emphasized how inconsistencies and differing perspectives of an infant’s response and appearance at birth can impact a physician’s decision to initiate life-sustaining interventions. The nurses spoke about the differing values and beliefs among healthcare providers, as well as parents, regarding neonatal resuscitation and quality of life issues. Neonatal nurses providing care to these infants postresuscitation expressed concerns that differing perspectives and inconsistencies among the decision makers contributed to the frustration and anger felt at the bedside. One nurse stated, And the biggest thing that makes it frustrating is exactly when everyone’s not on the same page or when everyone was on the same page and someone steps, jumps two pages, or jumps back two pages.

When dealing with parental perspectives, one nurse said, It’s frustrating when there’s been a decision made by the parents that they want everything done when you know, maybe that’s just not the best decision.

The frustration felt by nurses was accompanied by feelings of helplessness when having to be involved in the resuscitation of extremely premature infants. One nurse stated, It’s a helpless feeling because you’re standing there over this baby and you’re doing everything based on what the physician is asking you to do. And you’re standing there knowing full well that it’s not going well. The baby’s very, very fetal. You don’t want to be participating but it’s your job to participate.

Another nurse felt that while nurses have a passive role in resuscitation decision making, they are left with having to cope with the results of decisions that are made: We’re not in the decision process, we just get the order, and you have the family ready, to follow that plan and they’re finally feeling safe and okay, and then it just gets shattered, and we’re left picking up the pieces.

Perceptions of harm and suffering Nurses questioned whether they were inflicting more harm than good on infants born at the extremes of prematurity. Caring for an extremely premature infant was described as ‘‘being hard’’ and perceived as ‘‘harming’’ the infant. One nurse found it ‘‘very difficult’’ when parents are unable to hold or touch their child. Nurses spoke of suffering, not only as a moment in time but as a long journey faced with many ‘‘hurdles and ups and downs.’’ One nurse questioned whether it is morally right to allow an infant to continue to suffer: And, you think, wow, is it right, and is it worth it, and is it ethically right, and is it morally right? 56

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Being with the family The final theme, being with the family, illuminates the negative impact on nurses resulting from cumulative exposure to the stress of supporting families of extremely premature infants. Participants described the challenges of caring for families who are suffering. They empathized with the parents and tried to provide hope. One nurse explained the difficulty ‘‘not to feel their emotions’’ when caring for an upset family. Another nurse stated, You’re constantly there, constantly dealing with the family who’s in distress, and so I think it is easy to identify, over-identify with the family.

Discussion The findings revealed five themes describing a nurse’s experience of moral distress when involved in the resuscitation of extremely premature infants, providing us with invaluable insight on the unique nature of the moral distress experienced in the NICU. Uncertainty was a key contributor to moral distress experienced by neonatal nurses involved in neonatal resuscitation decision making. Mischel and Braden27 define uncertainty as ‘‘the inability to determine the meaning of events in a situation where the decision maker is unable to assign definite values to objects and events and/or is unable to accurately predict outcomes’’ (p. 98). Participants highlighted having to cope with the uncertainty regarding the long-term outcomes of extremely premature infants and the difficulties in predicting whether the child will encounter long-term adverse health issues. Coughlin et al.28 concur and state the lack of concrete early predictors of long-term outcomes introduces great uncertainty, which can result in significant moral distress. Similarly, Wilder29 suggests healthcare providers experience moral distress when they are unable to provide parents with an accurate interpretation of how morbidity may affect their infant’s future health. The findings indicate uncertainty regarding the resuscitation of extremely premature infants is amplified due to limitations of medical science and our inability to accurately predict outcomes. The decision of whether or not to attempt resuscitation is difficult for parents and caregivers since it is impossible to know what is in the infant’s best interest.30 The decision to resuscitate is further complicated by the profound consequences of the decision: when resuscitation is withheld, death is inevitable, and when resuscitation is provided, the infant faces a period of discomfort followed by an uncertain future, varying from completely normal developmental outcomes to considerable health issues including cerebral palsy, blindness, deafness, and cognitive delays.29 The lack of universally accepted guidelines regarding the initiation of life-sustaining interventions for extremely premature infants was a significant contributor to the uncertainty. Participants noted the decision to resuscitate at the extremes of prematurity is complicated by many independent factors that can affect health outcomes: birth weight, sex, place of birth (tertiary vs nontertiary center), use of antenatal steroids, singleton versus multiple gestations, and infections.31 While some authors advocate for treatment guidelines based on a certain birth weight or gestational age, many believe pre-established criteria should not be used due to the potential for incorrect assessments associated with gestational age in the delivery room.32 Although neonatal nurses struggle with the decision to resuscitate extremely premature infants because of unpredictable outcomes, the issue of uncertainty is almost impossible to resolve. Wocial33 argues that prognostic uncertainty is an inescapable reality in determining medical indications for treatment; thus moral distress associated with uncertainty and coping mechanisms to address this limitation in decision making warrant further investigation and integration into clinical and educational practices. When making decisions regarding resuscitation of premature infants, HCPs are legally and ethically required to ensure substitute decision makers, in this case parents, are making an informed decision.34 The informed decision-making process involves ensuring that the person has the capacity to understand the 57

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nature of the conditions, the benefits and risks of the recommended treatment, as well as any alternative treatments.35 Nurses in this study felt the information presented to families in imminent preterm labor is often difficult to comprehend due to the urgency of the situation, the parents’ emotional state, and the inability to predict treatment outcomes. Urgency in making a decision regarding resuscitation was identified as a significant barrier to obtaining parental informed consent. Evidence indicates approximately 80% of preterm labor occurs with no forewarning, which often leads to a series of events that require sudden decisions to be made.36 Challenges arise when a woman presents with threatened preterm labor as information about extreme prematurity and its consequences is provided during a rapid and emotionally intense emergency consultation.37,38 In addition, nurses felt the emotional state of parents impeded their ability to reach a truly informed decision. They suggested parents’ stress level during imminent preterm labor and delivery may interfere with the intake, synthesis, and integration of the knowledge necessary for informed decision making. Reasoning through difficult situations such as the decision to resuscitate extremely premature infants is complicated by intensely emotional circumstances for both parents and HCPs.33 The perception of an inability to obtain truly informed consent poses a major challenge in decision making as it leaves nurses and other HCPs susceptible to experiencing moral distress and moral residue. It contributes to nurses’ moral distress as they strive to help parents understand information pertaining to their child’s health in highly emotionally charged situations. Previous research has also identified ensuring informed consent as a key ethical issue and a potential source of moral distress for neonatal nurses.33,39 Another goal of informed consent is for HCPs to outline the potential longer-term consequences of a decision to resuscitate. Participants in this study felt a need to guarantee that parents truly understood the severity of possible consequences, such as the high risk of a poor quality of life for their child. However, in difficult situations with value-laden outcomes such as experienced in the resuscitation of extremely premature infants, it is arguable as to whether or not it is possible to achieve such a goal. Participants felt neonatologists should be guiding parents to a decision by offering recommendations on the course of action they should take. The findings indicate nurses experience tension when the decision regarding withdrawal of life-sustaining interventions is placed into the parents’ hands. Although parents of sick infants prefer to be involved in decision making, most want a recommendation from the physician regarding life-supportive decisions for their extremely premature infants.32 The healthcare team comprised a multitude of individuals, each with their own values, beliefs, and attitudes regarding neonatal resuscitation. These differing perspectives were identified by the neonatal nurses as one of their greatest frustrations about the decision-making process. Our study’s results are consistent with previous research which suggests the occurrence of moral distress is often a result of conflict between HCPs regarding what is in patients’ best interest.5,40 Differing perspectives were also evident among HCPs and the parents. Nurses expressed concern regarding a parent’s decision to continue with life-sustaining interventions when they do not believe it was the best decision for the infant. There is potential for conflict as nurses want to advocate for their patients, yet they also see supporting parents in their decision making as part of their role. A primary nursing role is patient advocacy, particularly when patients are unable to speak for themselves.39 This becomes a challenge in the resuscitation of premature infants as parents usually assume the role of the advocate for their child; however, they are often limited by their knowledge regarding neonatology.39 Nurses, on the other hand, are limited by their understanding of the family values as being in their particular child’s best interests. Our findings concur with previous research which indicates following a family’s wishes to continue aggressive treatment that is deemed futile is a significant contributor of moral distress for nurses.5,40,41 The nurses’ sense of ‘‘helplessness’’ and their perceived lack of power in the resuscitation decisionmaking process of extremely premature infants was a significant finding. Congruent with previous research,39,42 the nurses highlighted their lack of influence and involvement in ethical decision making 58

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in neonatal care. Nurses discussed how they are left dealing with the aftermath of a decision concerning an infant’s treatment yet they felt they were rarely involved in the decision-making process. This presents a distressing dilemma for nurses as they perceive they play a passive role in ethical decision-making processes regarding resuscitation at extremes of prematurity, yet bear the responsibility of implementing those decisions. The nurses viewed physicians as the final decision makers in the resuscitation of extremely premature infants and described feeling helpless when they are required to do everything based on what the physician is asking them to do. This finding represents a key perspective issue as most physicians view the decision to resuscitate an extremely premature infant as a choice ultimately made by the parents.21 HCPs have no authority to make treatment decisions on behalf of patients, except in an emergency situation when no capable person is available to make decisions.43 Nurses’ perception that physicians are making decisions regarding the initiation or withdrawal of life-sustaining interventions represents a lack of their knowledge regarding the process of informed consent and the role of physicians and parents in the decision-making process. Contrary to what nurses in this study believed about their role in decision making, parents and physicians often identify nurses as critical to the ethical decision-making process.21 Parents report nurses enhance decision making by providing emotional support, giving information, and meeting the physical needs of their infants and families, and play a key role as they struggle to understand important information and make critical decisions. Similar descriptions of nurses’ importance in decision making have been reported by physicians.44 Differing perspectives exist in regard to the roles of the various HCPs in ethical decision making associated with extremely preterm birth.21,39,42 Questions arise regarding why there are differences between nurses’ perceptions of their role and that of parents and physicians. Nurses’ misunderstanding of the physicians’ role in decision making might be related to the impracticalities of involving everyone in decision making. Nurses’ perceived lack of power in the decision-making process could be associated with the socialization and educational preparation of nurses and the hierarchical structure within the healthcare system. Well-intentioned attempts to promote the uniqueness of nurses, and to define their boundaries, may have caused walls to be built between nurses and other disciplines.45 Orchard et al.46 suggest the unequal balance of power among HCPs acts as a barrier to interdisciplinary collaborative practice. Collaboration based on a relationship of interdependence, built on respect, trust, and understanding of the unique and complementary perspectives of each profession, cannot occur without resolution of this power imbalance.46 As identified in the literature, team work can be negatively affected when HCPs are not aware of each other’s role in decision making.47 The NICU is a highly specialized setting comprised of an abundance of different disciplines and thus conflict may be reduced if HCPs come to recognize and understand the role each healthcare team member, as well as the parents, play in the decision-making process. The potential for inflicting more harm than good on their patients was a concern expressed by the nurses. Futile aggressive care with no perceived benefits and patient harms resulting from pain and suffering are significant contributors of moral distress for nurses in particular.7,10,48 Nurses often experience moral distress because they have a desire to provide comfort and optimal pain management for their clients.40 Recurring themes concerning nurses’ experience of moral distress include overuse of life-sustaining technology, a profound sense of responsibility to patient’s welfare, a desire to relieve suffering, and perceived unresponsiveness of physicians toward suffering.5 Nurses hold a view of themselves and their professional self-identity that is intrinsically linked to, and dependent upon, their capacity to see good in the work they do.49 Seeing value in their work is associated with feelings of achievement and well-being, a positive self-image, and motivation in their work.49 If nurses do not see value in the work they do, the potential for moral distress may be heightened. In negative experiences, confirmation of being a professional by doing the right moral thing may be lost.50 59

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Being with the family to provide hope to the parents and do everything they can to save their infant was of prime importance. The nurses were highly empathetic toward the parents of the babies they cared for and emphasized the difficulties of separating themselves from the families’ emotions. Nurses being constantly exposed to patients suffering surrounding the circumstances of their extremely preterm infant were potentially susceptible to the experience of moral distress and, subsequently, compassion fatigue. HCPs experience a patient’s pain vicariously, which affects them psychologically, putting them at greater risk of experiencing compassion fatigue and becoming mentally, physically, and spiritually exhausted.51,52 The literature explains that compassion fatigue is the final result of a progressive and cumulative process that is caused by continuous, intense contact with patients and exposure to stress.53 Compassion fatigue is a concern for neonatal nurses as it has been identified in the literature as a consequence of working in stressful environments and experiencing morally distressing situations.51,52 The adverse consequences of compassion fatigue support the need to acknowledge and address the cumulative distress that occurs for nurses working in neonatal intensive care units.

Limitations As the study involved a secondary analysis of data from a previous qualitative study, analysis was limited to the data originally collected.20 However, a rich descriptive database was available and the research question for this study fit well with the original study as both studies were concerned with the ethical dimensions of the decision-making process of resuscitating infants at the extremes of prematurity. The findings are based on a small sample size, and although may be generalizable to other NICU nurses, they are not generalizable to those working outside of the NICU.

Implications The findings offer invaluable insight for nursing practice, education, and research. Strategies are needed to decrease the moral distress experienced by neonatal nurses involved in the resuscitation of infants born at the extremes of prematurity. Workshops to help staff identify and cope with moral distress have shown to be effective in reducing the experience of moral distress among registered nurses.3 Providing staff with coping mechanisms and tools for identifying and working through ethical dilemmas and working through casebased scenarios may also be beneficial. Other practice implications include encouraging HCPs to use more effective communication strategies when involved in emotionally challenging situations. For example, ethics rounds consisting of daily discussions among clinical staff regarding moral issues may be presented.54 Ethics rounds are a beneficial tool as they enable open dialogue for the resolution and perhaps the prevention of ethical conflicts within the healthcare team. Debriefing sessions can alleviate moral distress as they allow multiple members of the healthcare team to express ethical concerns in a nonjudgmental atmosphere.55 Discussing the possibility of preterm labor with parents in the early stages of pregnancy could prove to be beneficial. Participants felt that the urgency of the situation, in combination with the emotional state of parents, impeded the ability to reach an informed decision regarding infant resuscitation. Some suggest earlier discussions regarding patient care, treatment options, and preferences should be initiated before crisis situations so that patients and families are not compelled to make hasty medical decisions without having the knowledge and time to consider potential consequences.40 If nurses believe parents have had the time and knowledge necessary to consider and understand the potential consequences and long-term implications of their decision, then perhaps nurses’ experience of moral distress would be lessened. Findings also suggest greater emphasis is needed on interdisciplinary collaboration and education. Assisting medical and nursing students in the collaboration, identification, and resolution of moral issues 60

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during basic education programs would help to promote greater moral discourse between nursing and medicine in clinical practice.54 Additionally, continued education regarding ethical dilemmas is needed, as undergraduate education programs cannot adequately prepare students to deal with the vast amount of different moral issues one may encounter in clinical practice. Greater emphasis on educating HCPs on the process of informed consent and the roles of different healthcare team members in ethical decision making is very much needed. Finally, further research pertaining to moral distress among neonatal nurses is necessary. This study’s findings identified contributors to moral distress experienced by nurses when involved in the resuscitation of extremely premature infants; however, little is still known regarding the impact moral distress may have on patient care and the psychological health of neonatal nurses. More research on why nurses feel helpless and not involved in decision making is warranted as lack of involvement in decision making is commonly cited in the literature as a contributor to moral distress. Similarly, further research to identify and understand nurses’ perceptions of the role nurses, physicians, and parents play in decision making at the extremes of prematurity is needed.

Conclusion Moral distress continues to be a significant issue for the nursing profession, particularly for neonatal nurses. It is important for organizations to recognize the factors contributing to moral distress and develop strategies necessary to effectively address the issue. The findings of this study afford invaluable insight on future implications related to nursing practice, education, and research. Conflict of interest The authors declare that there is no conflict of interest. Funding This research received no specific grant from any funding agency in the public, commercial, or not-forprofit sectors. References 1. Canadian Nurses Association. Ethical distress in healthcare environments, 2003, http://www.cna-aiic.ca/~/media/ cna/page%20content/pdf%20en/2013/07/26/10/43/ethics_pract_ethical_distress_oct_2003_e.pdf 2. Hamric AB. Empirical research on moral distress: issues, challenges and opportunities. HEC Forum 2012; 24: 39–49. 3. Beumer CM. The effect of a workshop on reducing the experience of moral distress in an intensive care unit setting. Dimens Crit Care Nurs 2008; 27(6): 263–267. 4. Pauly B, Varcoe C, Storch J, et al. Registered nurses’ perceptions of moral distress and ethical climate. Nurs Ethics 2009; 16(5): 561–573. 5. Elpern E, Covert B and Kleinpell R. Moral distress of staff nurses in a medical intensive care unit. Am J Crit Care 2005; 14: 523–530. 6. Newsom R. Compassion fatigue: nothing left to give. Nurs Manage 2010; 41(4): 42–45. 7. Robinson R. Moral distress and registered nurses. Dimens Crit Care Nurs 2010; 29(5): 197–202. 8. Austin W, Lemermeyer G, Goldberg L, et al. Moral distress in healthcare practice: the situation of nurses. HEC Forum 2005; 17(1): 33–48. 9. Milton L. Articulating nursing’s moral residue. Nurs Sci Quart 2001; 14(2): 109–114. 10. Cavaliere T and Dowling D. Moral distress in neonatal intensive care unit RNs. Adv Neonatal Care 2010; 10(3): 145–156. 61

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Moral distress in the resuscitation of extremely premature infants.

To increase our understanding of moral distress experienced by neonatal registered nurses when directly or indirectly involved in the decision-making ...
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