Oncology Nurse Managers’ Perceptions of Palliative Care and End-of-Life Communication

Abstract

The purpose of this study was to describe pediatric oncology nurse managers’ (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses’ experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2–5, or >5 years’ work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants’ mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi’s method. Findings include NMs’ overall experience of “Fostering a Caring Climate,” which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff’s PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.

Annually, more than 13,000 children younger than 20 years (Compas, Jaser, Dunn, & Rodriguez, 2012) are diagnosed with cancer, and approximately 40,000 children are receiving cancer treatments (Compas et al., 2014). Despite advances in cancer therapy and improvements in overall survival rates during the past decades, children still die from cancer. Approximately 20% of all children diagnosed with cancer will not survive 5 years or more (American Cancer Society, 2016; Field & Behrman, 2003; Knobf, 2013). Therefore, enhancing the quality of palliative care (PC) and end-of-life (EOL) communication for children with cancer is a national health care priority (National Institutes of Nursing Research, 2014). EOL care is provided in the last days, weeks, or months of a child’s life. PC has been defined as “the active holistic care of the child’s mind, body, and spirit, [which] also involves giving support to the family” (World Health Organization [WHO], 2016). This complex care, which encompasses the medical, psychosocial, spiritual, and economic needs of patients, is provided by an interdisciplinary team to reduce symptom severity and improve quality of life (Feudtner et al., 2013; WHO, 2016). Pediatric oncology nurses are expected to clearly and caringly communicate with children and their families during PC/EOL care. Nurse managers (NMs) are responsible for creating safe, healthy environments on their units that support the health care team and contribute to patient engagement (American Organization of Nurse Executives, 2015). On a pediatric oncology unit, this includes developing and monitoring high-quality PC/EOL communication skills in the nursing staff. Despite these important functions, there is a gap in knowledge regarding NMs’ perceptions and experiences in PC/EOL communication.

Challenges in PC/EOL Communication

Effective PC/EOL communication consists of providing timely and sensitive information that is understandable to the patient and family (Dahlin, 2013). Effective communication also provides the foundation to develop and sustain a trusting relationship among children, family members, and health care providers (Levetown, Meyer, & Gray, 2011). It is vital that nurses effectively engage in PC/EOL discussions with families of children with cancer, while considering the appropriate developmental level of the child. Effective communication with children and their parents may decrease tension in families, enhance the child’s cooperation, reduce anxiety, and normalize discussions surrounding PC/EOL (Beale, Baile, & Aaron, 2005).

Barriers nurses must overcome to provide effective PC/EOL communication include their own perspectives and system factors (Helft, Chamness, Terry, & Uhrich, 2011; Hendricks-Ferguson et al., 2015; Montgomery, Sawin, & Hendricks-Ferguson, 2016). Pediatric oncology nurses describe feeling uncomfortable communicating with dying children and their families, often because they lack PC/EOL communication training, confidence to initiate PC/EOL communication with children and families, and mentorship in how to deliver effective communication (Hendricks-Ferguson et al., 2015). Time, staffing constraints, inadequate education related to PC/EOL care and communication are some system factors (Helft et al., 2011).

To date, studies of nurses caring for dying children with cancer have not focused on NMs’ experience and skill in PC/EOL communication or the extent to which their communication perspectives influence their discussions with children, families, and nursing staff (Lacasse, 2013). NMs are in a unique position to influence nursing care provided to children with cancer and their families during PC/EOL (Lacasse, 2013). Central to the NM’s role is fostering a unit culture that positively influences overall patient care and enhances the satisfaction of the individuals supervised. Existing evidence suggests that NMs have an important impact on nurses’ clinical skill development (Van Dyk, Siedlecki, & Fitzpatrick, 2016), productivity (Lewis & Malecha, 2011), job satisfaction (Bormann & Abrahamson, 2014; Laschinger & Fida, 2015), and employment retention (Spence Laschinger, Leiter, Day, & Gilin, 2009). However, NMs also face the unique challenges of managing nurse staffing levels, monitoring unpredictable patient acuity, accommodating time constraints, and addressing nurses’ professional development needs (Rankin et al., 2016). Because of NMs’ operational responsibilities and understanding of the overall health care environment, NMs may have a unique perspective about delivery of PC/EOL communication by oncology nurses. In summary, little is known about pediatric oncology NMs’ perspectives of PC/EOL communication or the impact NMs have on PC/EOL communication on their clinical unit.

Purpose

The purpose of this study was to describe pediatric oncology NMs’ perspectives of PC/EOL communication.

Method

Sample and Procedure

This empirical phenomenological study was part of a larger study exploring the perspectives of communication during PC/EOL care among pediatric oncology nurses with varying levels and years of work experience. In the larger study, because nurses’ perceptions may differ based on the length and type of work experience, nurses were assigned to focus groups based on the length and type of their work experience (i.e., nurses with <1, 2-5, or >5 years’ work experience and NMs). In the study described here, 11 NMs from three pediatric oncology programs participated in the focus groups. Each of the programs was located in a large Magnet®-designated Midwestern pediatric hospital with 300 pediatric beds or more. U.S. News & World Report (2018) ranked each of the programs among the “best hospitals for pediatric cancer.” In addition, U.S. News & World Report ranked the yearly volume of patients with cancer-related disorders and/or new patients over the past 2 years as predominantly “high” (range from average to very high). The participating hospitals were located 250 to 375 miles from one another. Although two of these hospitals were affiliated with larger university hospital systems, these two university systems had no relationship to each other.

We held one NM focus group at each of the three hospitals, with each NM attending a single focus group. Nurse manager was defined as anyone who had supervisory responsibility on the unit. A standardized procedure was developed for the larger study and is detailed elsewhere (Hendricks-Ferguson et al., 2015). The “group-as-a-whole” approach using focus groups has been supported in other studies as a mechanism to identify shared experiences (Kooken, Haase, & Russell, 2007), and this approach was useful for capturing communication experiences of both novice and experienced nurses (Hendricks-Ferguson et al., 2015; Montgomery et al., 2016). The overall study had institutional review board approval from each setting, and consent was obtained from all the NM participants. The procedures for contacting and getting the consent of the focus group members have been reported elsewhere (Hendricks-Ferguson et al., 2015; Montgomery et al., 2016). The research team emphasized the voluntary and anonymous nature of the study, assuring the NMs that their participation would not affect their performance evaluation. Two investigators from one of the other sites who were experienced in focus group methodology conducted the focus group. One investigator, using the same semistructured interview guide from the larger study (Hendricks-Ferguson et al., 2015), led the discussion. We designed the initial general questions to solicit the participants’ stories in their own words (e.g., What do you think especially helped you in communicating with children with cancer and their families about PC/EOL care?). Subsequent questions addressed specific issues (e.g., What do you perceive as priority concerns for nurses in communicating with other health care providers of children with cancer and their families about PC/EOL care?). The second investigator took notes on the participants’ nonverbal observed behaviors (e.g., crying, soft voice, looking at others, hand movements). Each focus group was audio-recorded and transcribed by a professional transcriptionist. The investigators compared the transcription with the audiotapes to ensure accuracy.

Data Analysis

Data analysis was guided by Colaizzi’s (1978) eight-step iterative process (Hendricks-Ferguson et al., 2015; Montgomery et al., 2016). We used the nonverbal notes to confirm or clarify the meaning statements if needed (e.g., was she crying?). Four authors reviewed all the transcripts, generated 2,912 meaning statements, and identified the overarching theme, core themes, and subthemes. Identification and naming of themes were done as a group by the first four authors. Any disagreements were addressed in group discussions until consensus was reached. The remaining two authors reviewed the themes to confirm that they captured the NMs’ experience of PC/EOL communication. The themes and exemplars were aggregated across all sites.

Results

Sample Characteristics

All 11 NM participants were female and Caucasian. The majority (91%) were married. All had supervisory responsibilities on pediatric oncology units. Ninety percent had a BSN or higher degree (54% had a BSN and 36% had a graduate degree), the mean length of nursing experience was 15.8 years, and the mean length of pediatric nursing experience was 12 years. Prior to participating in our study, no NMs had attended the national EOL Nursing Education Consortium Education Program; some had attended one to three continuing education programs on EOL care.

Overarching Theme, Core Themes, and Subthemes

Analysis of the NM data resulted in the identification of the overarching theme, titled “Fostering a Caring Climate”—characterized by NMs simultaneously addressing the care of the individual child/family and the needs of the nursing staff. Although NMs occasionally provided direct care to families, their primary focus was on their unit nurses’ communication skills during PC/EOL. The NMs described a broad perspective of integrating communication into the responsibilities of their role, especially related to fostering a family-centered environment. Underlying the overall theme “Fostering a Caring Climate” were three core themes: (1) Imprint of Early Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce (see Table 1).

Table 1.

Overall Theme, Core Themes, Subthemes, and Exemplar Quotes Describing Nurse Managers’ Experience in Palliative Care/End-of-Life Communication.

Overall theme: Fostering a caring climate
Core theme/Subtheme	Exemplar quotes
Core Theme 1: Imprint of Early Grief Experiences and Emotions	• I always go back to my first primary that died. I remember at that time that it was so frustrating because I did not have the right words to . . . [be] totally comforting to the parents. It was really hard, and like I said, it was my first primary on top of all that. • I also learned a lot about my first experience with death and dying at home . . . and I became an advocate for kids being at home. . . . I have lots of memories with him, many firsts with him.
Core Theme 2: Constant Vigilance: Assessing and Optimizing Family-Centered Care
2.1: Hard to keep the pulse: Challenges in supporting nursing staff’s emotions and needs	• It’s like, how can I support them? I rely on a lot of my more senior staff too. . . . You know, they don’t always necessarily come to me, but I’ll be like, if I know five kids who have died this previous week, how’s everybody doing, because they are more in touch with what’s going on than I am, because I’m in my office during meetings. I mean, you try to be available, but you still don’t. . . . It’s hard to keep the pulse.
2.2: Talking on eggshells	• I know with my staff, their biggest thing is they don’t know what to say. They don’t know how to start the conversation. They don’t know what’s appropriate, what’s inappropriate. . . . You always kind of follow their [the parents’] lead, and I think you wait for them to open that line of communication with you because that kind of gives you a sense that they’re ready to start having this discussion. • We were able to talk about, have you planned your funeral? So we kind of would be able to talk about, because you think you’re going to have music at your funeral, and then he’d say, I really don’t want this music. Or I want this, this is my favorite song. Well, let’s tell your parents. It was always him by himself, so I’m like, well make sure you tell your mom that you don’t want this kind of music because you don’t want your friends to be reminded of you dying based on the music or something. So we had lots of opportunity to sit and just talk about his funeral plans and what he wanted, and then it would start the conversation with his mom and dad at home. His mom ended up calling me later and saying thank you for getting that line of conversation. Now we’re able to start planning his funeral. But it does always come out of . . . you just have to open up . . . and start a line of communication, and it usually comes out of something, somebody starting something.
2.3: Boundary challenges	• We had a child that his mom was very, very poor, and the staff bought her [the child] clothes far beyond what the mother could ever afford, and that was . . . hurt the mother’s feelings. The mother started crying. They thought she was all happy. . . . She wasn’t happy, she was feeling extremely guilty because she couldn’t provide that [clothing], and that created lots of problems. • It’s more of a teaching, empowering opportunity than it is a disciplinary opportunity. . . . It was an opportunity for me to help her [the nurse] be empowered . . . to learn boundaries and to protect herself as well as the child. To look at a bigger picture than just that child and to share with her that I’ve been there. I’ve taken kids to the movies. I’ve taken kids out to eat. I’ve gone to their house. Here’s what my experiences were, and here’s what I learned from it. . . . And this may be something you need to take with you.
2.4: Balancing nurse and unit needs	• Sometimes we have issues with some nurses wanting to go to the funerals, and we try to accommodate. Of course, you never know when someone is going to pass away. The schedule is out, and the person who is the primary nurse ends up being scheduled for that day, of the funeral, so we try everything we possibly can to switch someone around or get someone to work for them or move it around. Sometimes it’s not possible, and then we feel . . . • [If overstaffed] If there’s five people that want off, and you can’t let one person off . . . their perception is that you played favorites. You didn’t, so we had to . . . we took the stand that nobody will be taken off the schedule to attend a funeral (unless a substitute was found).
Core Theme 3: Promoting a Competent, Thoughtful, and Caring Workforce
3.1: Screening for new hires	• When I do interviews . . . to hire new nurses, that’s part of our conversation. . . . Talk to me a little bit about how you’re going to feel if a child dies. We talk about how I’ve been able to do it. As you just know, they’re [the child] going to travel one of two roads, and it’s equally rewarding in two very different ways. . . . You know you’re either going to cure them, and they’re going to be coming back to visit you 5 years later with their graduation invitation in their hand. Or with a child who dies, you’ve supported the family, the child’s pain free, you’ve done everything you could to make this the best situation that it can be. . . . And so if you can take some reward from that no matter how difficult it still is—I mean this is kind of what we talk about with anyone I hire to my unit.
3.2: Fostering nurses’ professional development	• [Need for education] So much of the time you fly by the seat of your pants . . . learn from the first experience and what was good and what was bad and delete the bad and keep on with the good. . . . Even in hospice, nobody teaches you what to say. Nobody teaches you how to communicate . . . [such as] What do you think you might want [the child] to wear? Have you thought about that? • [Need for development] Those people that do the best job of it are those that have taken the next step to really look at themselves and where they are in the situation and where is the family, and then they can . . . interpret family, interpret child, and be able to sort of organize what they do to approach them. . . . So that’s all they need to do. They just need to take that next step to look at themselves. . . . We all need to look at ourselves before we delve into that with the family. • [Need for evidence] There . . . is literature that tells us . . . the things that parents will go through when their child is dying. These are things that parents will go through when their child is dying at different ages. And so there is some knowledge, solid knowledge for them [to acquire]. . . . I just don’t think they know what they need.
3.3: Enhancing nurse managers’ leadership skills	• We as managers have been somewhat frustrated wanting to support our staff and trying to figure out what is it they need and how we can best do that.

Imprint of Early Grief Experiences and Emotions

The NMs described vivid memories of their own early experiences with the parents of a dying child with cancer and perceptions of how these experiences influenced their priorities as an NM. Some cried as they shared these early experiences, demonstrating the impact and longevity of grief emotions. Also, the NMs were troubled and had regrets because of the sustained belief that they were not adequately prepared as novice nurses to provide adequate caring responses to parents whose children were dying: “I just remember at the time thinking, ‘Oh, my God, I cannot believe the words are coming out of my mouth’ and just that feeling of ‘God, I hope I am doing this therapeutically’.” The NMs also described feeling that they had insufficient experience communicating and caring for children at EOL, were insecure, and were “at fault as a new nurse” for not being prepared to provide appropriate PC and EOL communication and care for their “first” dying child: “I think as your first experience, you are very young, and you do not know what to do with this family, and it is like you almost want to take the blame on yourself . . .”

Early experiences of communicating with children dying of cancer and their families contributed to the NMs’ commitment to provide better EOL care that is focused on the children’s and parents’ preferences. Lasting memories and emotions from their early experience(s) were foundational to their current leadership approaches. The NMs were acutely aware that the situations their nursing staff face may have a lasting influence on their careers. These early PC/EOL experiences inspired the NMs to acquire a specialized set of assessment skills to evaluate the needs of children and families during PC/EOL care and to determine when their nurses needed extra support because of the unit’s current EOL care stressors and challenges.

Constant Vigilance: Assessing and Optimizing Family-Centered Care

NMs have a daily responsibility to be aware of communication patterns as well as the operational and clinical needs of their pediatric oncology care unit. They described a level of watchfulness over the unit environment to promote a caring child- and family-centered climate. Four subthemes described the challenges NMs face in monitoring the environment, enhancing difficult conversations, addressing boundary challenges, and balancing unit and staff needs in their commitment to constant vigilance (see Table 1).

Hard to keep the pulse: Challenges in supporting staff’s emotions and needs

NMs experienced inevitable challenges in “keeping the pulse” of their unit, trying to maintain a high level of awareness of all unit activities in a “round-the-clock” family-centered-care environment. These challenges affected NMs’ ability to anticipate the nursing staff’s needs and to ensure that their nursing staff were supported during difficult PC or EOL situations. Communication challenges experienced with children and families were somewhat alleviated by the NMs’ reliance on experienced nurses and nurses with informal or formal leadership roles (e.g., the charge nurse). The relationship between NMs and their nursing staff was critical to achieving the NMs’ self-defined level of commitment to constant vigilance.

The NMs talked about using informal targeted assessment and mentoring to support their nurses. Specifically, the NMs questioned whether newer nurses are being taught that it is acceptable to seek support from team members during difficult PC/EOL communication situations. The NMs also sought to disavow the belief that having a difficult clinical assignment was the assigned nurse’s problem and that the nurse must manage the situation alone regardless of the difficulty. Additionally, the NMs discussed the importance of keeping lines of communication open: “Even when nurses are not happy about taking another patient, they will do so willingly when [their team member] is caring for a dying patient.”

Some NMs worried about nurses’ impaired assessment skills, for example, missing parent care preferences, missing subtle cues, inability to identify communication issues between family members, and not understanding the unique needs of family members. For example, the NMs particularly noted the unrecognized grief of grandparents (called “double-layered grieving” by one NM). In addition, the NMs noted that grieving grandparents need more assistance and that nursing staff may not readily address grandparents’ needs: “A patronizing touch is not enough.” Often, the NMs viewed themselves as the “intervention” by addressing their nurses’ needs through “role modeling” effective communication, being the touchstone for their staff as they provide care or by enhancing trust and connectedness among nursing staff. The NMs emphasized the importance of offering emotional support during particularly difficult patient care situations, indicating that some of their nurses were hesitant to reach out to them for help: “When the little girl had passed unexpectedly, I knew there were some people that were definitely close to that family that I made sure to check in with. . . . How are you doing? I’ve been thinking about you.”

Talking on eggshells

The NMs described communicating with children and family members about PC/EOL care as being much like “talking on eggshells,” being hesitant about initiating difficult conversations with parents regarding their child’s disease trajectory and the transition from cure-focused therapy to only a PC/EOL care focus. The NMs conveyed the need for and challenges of nurses to be realistic with families by conveying clear and accurate information to them. The NMs wanted to effectively teach their staff nurses how to do that: “How do you balance wanting to keep that little spark of hope yet feeling like you have done your job in truly making sure they understood where they are at?”

The NMs’ ability to recognize challenging situations for their staff nurses provided a unique opportunity for them to intervene and optimize family-centered communication. This was described as “coaching, helping the nurse find words that are honest and comforting to patients and families during the transition to PC/EOL care, and sometimes the family was talking on eggshells.” Also, the NMs described efforts to facilitate difficult conversations between the dying child and the family (e.g., planning the child’s funeral).

Boundary challenges

Another component of the NMs’ vigilance was their attention to developing and sustaining therapeutic relationships. Helping staff maintain appropriate communication and interpersonal boundaries with patients and families was among the NMs’ most frequently discussed challenges. The NMs’ concerns occurred on a spectrum from barely “crossing over the line” to clear boundary violations and was described as a universal issue. They felt that maintaining appropriate interpersonal boundaries was inherently more difficult for oncology nurses because of the close relationships nurses often develop over time with the children who have cancer and their families. For example, the NMs described the need to help inexperienced nurses avoid crossing the therapeutic boundary line because they “do not know what they do not know” about boundaries, that is, the boundaries were invisible to them. The NMs indicated that many nurses learn to “see” the invisible boundary by unintentionally tripping over it once: “I think every nurse at some point early in their career in oncology . . . has that one family where you overstepped your bounds and maybe got too close. You have that one experience.” The NMs thought that their nurses’ boundaries often become “blurred” and described examples of boundary-crossing social situations, such as going out to eat with patients/families, going to the zoo or a movie with patients/families, and a father showing up at a nurse’s house. The NMs reported that nurses in boundary-crossing relationships can become selective, possessive, and territorial with their patient assignments. The NMs perceived themselves as performing a “balancing act”; that is, they saw themselves as helping their nurses distinguish between appropriate communication and overwhelming involvement that limits therapeutic relationships: “We don’t condone [crossing boundaries], we don’t promote that or support it, but it seems like, once that does happen to a nurse, then they just naturally kind of learn.” The depth of the NMs’ discussions on boundaries highlights the importance of this topic when promoting a family-centered climate. Oftentimes, the NMs needed to coach individual nurses who thought that they were delivering family-centered care but were instead at risk of crossing or had already crossed interpersonal boundaries. For example, the NMs focused on helping these nurses understand how the relationship between their own health and sense of professionalism can greatly affect high-quality care for the child and the family. “I had to know how to teach the boundaries, how to have boundaries myself, and then how to correct when there is a boundary issue.” Additionally, the NMs felt that continual assessment and coaching to enhance therapeutic communication were more helpful and empowering to their nurses than using a punitive approach.

Balancing nurse and unit needs

One of the challenges the NMs had when trying to optimize family-centered care was managing competing priorities. Often the NMs struggled with how to balance the needs of the unit and the grief needs of individual nurses. For example, policies for attending the funeral of a nurse’s patient differed across settings, but competing patient/unit priorities often drove the NMs’ decision making. The NMs indicated that the support needs of the nurse to attend the viewing or funeral of deceased pediatric patients had to be balanced with the staffing needs of the unit. For example, the NMs realized that prioritizing staffing needs could be difficult for a nurse to accept, and the NMs sometimes struggled to communicate their rationale for staffing decisions. Fairness in managerial decisions meant consistently deciding that staffing the unit for the remaining patients took precedence over a nurse’s attendance at funeral services. Additionally, the NMs realized such decisions may mean that the emotional/bereavement needs of the family and the nurse are not met and that some nurses may experience anger over their NM’s staffing decisions. Open communication was seen as helpful in these situations.

Promoting a Competent, Thoughtful, and Caring Workforce

In daily practice, NMs have a critical role in addressing the workforce and staff development needs of the nurses on their unit. Promoting a competent and caring pediatric oncology workforce skilled in PC/EOL communication and delivery of high-quality, family-centered care was a major focus of the NMs in this study. In the three subthemes identified, the NMs shared a broad perspective that included both screening new hires and continued staff development. In addition, the NMs were committed to developing their own leadership skills (see Table 1).

Screening new hires

The NMs reported a purposeful, structured approach to interviewing potential new hires and orienting newly employed nurses to their units. For example, the NMs elicited the nurse applicants’ attitudes and communication experiences, including their level of comfort in caring for children and their families in PC/EOL. The NMs described the types of communication they used to “set the stage” for communication issues around PC/EOL care with all new nurse applicants. Furthermore, the NMs indicated that they orientated new nurses to the philosophy of communication- and family-centered care, especially highlighting PC/EOL situations.

Fostering nurses’ professional development

As an important part of their role in addressing workforce and staff needs, the NMs discussed the importance of developing all nurses on the unit as well as attending to the educational and support needs of their nursing staff. For example, the NMs prioritized the assessment of needs related to effective communication and developing nurses who are new to pediatric oncology. Also, the NMs commented on their responsibility to ensure that inexperienced nurses had at least minimal skills in PC/EOL communication and caring for pediatric oncology patients.

A common concern of the NMs was the lack of basic PC/EOL communication educational preparation for nurses entering the workforce. The NMs expressed frustration that PC/EOL communication is learned on the job rather than in an educational setting prior to caring for children and families with PC/EOL needs. In addition, the NMs thought that self-reflection was a responsibility of all their staff communicating with children and families during PC/EOL. Also, they thought that assessing staff, providing opportunities for staff to evaluate their own performance, and facilitating development were the responsibility of NMs. The NMs shared the belief that some nurses need more structured PC/EOL education to recognize their own knowledge deficits, enhance their PC/EOL communication skills, and foster their confidence when providing PC/EOL care. The NMs recognized that following the child’s or family’s lead was important, but they also wanted their nursing staff to use the most recent evidence to facilitate communication. The NMs indicated that the most effective way to deliver education was to integrate learning into the nurses’ workweek. Attending mandatory formal educational sessions was not seen as appealing or effective, especially when the sessions were scheduled on the staff nurses’ day off. However, the NMs were also supportive of PC/EOL continuing education programs, such as the End of Life Nursing Education Curriculum, wherein nurses have opportunities to receive nationally recognized PC/EOL education.

The NMs placed a high priority on the need for a support system to help staff nurses who provide care to PC/EOL patients. Specifically, they indicated that staff nurses need a support system to help them cope with the deaths of their patients; the NMs thought that the lack of such a system was a barrier to delivering high-quality PC/EOL care. These managers were committed to developing systems and resources to improve PC/EOL communication skills. The resources differed by study site, but central to the NMs’ efforts was finding resources that are helpful to their nursing staff. Strategies included interdisciplinary rounding, debriefing events, bereavement groups, and use of employee assistance resources. Interdisciplinary rounding was viewed as effective for preventing and dealing with stressful communication issues. Debriefing with another staff member (e.g., a chaplain) was also viewed as effective, but limited staff availability for debriefing inhibited this strategy’s effectiveness. The NMs also saw “nurse-to-nurse” sharing of perspectives as important. Recognizing that finding a way to tell their story was an important need of many staff nurses, a designated “safe” place for nurses to engage and debrief about PC/EOL patient experiences was viewed as essential. Development of bereavement groups for staff was viewed as an effective way to provide support for nurses communicating with families at EOL because the groups were informal and not seen as professional counseling but as an opportunity to share experiences. A rarely used but helpful resource was the Employee Assistance Program at each organization. Some nurses may need privacy and can seek confidential support from the Employee Assistance Program to deal with emotional responses or intense grief after the death of a pediatric patient.

Gaps in resources were also identified by the NMs. For example, they were frustrated with the lack of private space on the unit for staff members to grieve immediately after the death of a patient. The NMs proposed that a specific designated “private” place to grieve was necessary for nurses to cope with and navigate the grieving process. Another frustration was the need to fill a hospital bed with a new admission soon after the death of a child. For example, the NMs viewed this as disrespectful of the needs of staff nurses and families to emotionally process the child’s death and grieve in the room where the child had died. Also, the NMs expressed their commitment to seek out such communication and other PC/EOL resources for their staff.

Enhancing NM Leadership Skills

Experienced and new NMs shared the need for continued leadership development to prepare for the challenges of promoting optimal PC/EOL communication in the workforce: “Fifty percent of my staff are new grads, so how do I . . . protect them [from crossing boundaries]? I struggle with how do I facilitate that.” In addition, a subset of relatively new NMs spoke about their need for education and skill development. “As a new NM, I need to know what I can do to support [staff] and to teach them boundaries and [ways] to protect themselves versus [getting] burned out, . . . [but] I’ve not found very much of that.” “I’m kind of in a hard spot, being new to this patient population, new to my position, and new to this staff. . . . I’m trying to learn all aspects of it.” For the most part, the NMs looked to their institutions and professional organizations for support and guidance in leadership development.

Discussion

This study explored the perceptions of pediatric oncology NMs on PC/EOL communication. To our knowledge, this is the first study to examine how pediatric oncology NMs perceive the PC/EOL communication needs of patients and their staff nurses. An interesting finding from this study is the powerful effect of early PC/EOL communication experiences on the NM participants’ later approach to their management role. All the NMs underscored how their own initial death experiences guided their leadership style. Our NM participants were approximately 15 years away from their personal experiences as novice nurses, yet they still vividly described their early encounters with patient death. They thought these early death experiences shaped their current focus on communication in PC/EOL. Their experiences caring for dying children as new staff nurses were mostly negative (i.e., feeling unsure, unprepared, and uneducated, they had “fumbled” in their early PC/EOL communication with affected families). They believed it their duty as NMs to make sure that this did not happen to nurses on their unit, and they believed that positive early PC/EOL experiences accelerate the nurse’s development of family-centered care skills. These NMs felt responsible to protect, support, and educate the staff nurses they supervised. In the rare instances when their early PC/EOL experiences were positive, they provided a road map for the NMs’ own PC/EOL communication with families and for mentoring nursing staff to engage in PC/EOL discussions with the families of the dying children. This finding is supported by the findings of other investigators who report that early death experiences with patients result in sustained EOL memories that foster confidence to engage in PC/EOL discussions with families and provide nursing care to future dying patients (Kent, Anderson, & Owens, 2012). Unfortunately, many of the negative PC/EOL experiences that occurred early in the NMs’ nursing career were similar to the experiences of current novice staff nurses (Hendricks-Ferguson et al., 2015). Our NMs provided new evidence to support the assessment of needs for PC/EOL patient care and PC/EOL education for nurses with less experience in oncology nursing.

The NMs described the daily practice of conducting thorough assessments of the pediatric oncology patients, families, and staff nurses on their unit. The NMs believed that vigilantly conducting assessments (e.g., of staff nurses’ needs in delivering optimal patient care) on an ongoing basis was congruent with the tenets of the American Nurses Credentialing Center and Magnet® Recognition Program (Kieft, de Brouwer, Francke, & Delnoij, 2014). The NMs’ responses in this study were also consistent with the tenets that (a) creating a trusting work environment for staff nurses is essential to improving patient care experiences (Kieft et al., 2014) and (b) NMs should focus on assessing staff nurses’ competencies and the implementation of these competencies in clinical practice (Numminen et al., 2014).

The NMs in this study were acutely aware of the invisibility to novice nurses of the professional boundaries needed to foster optimal PC/EOL communication. These NMs understood the threat to therapeutic relationships when nurses on their units crossed boundaries, in part because these nurses did not “see” the boundaries. The National Council of State Boards of Nursing (2014) defines professional boundaries as “the spaces between the nurse’s power and the client’s vulnerability” and boundary crossing as a “decision to deviate from an established boundary for a therapeutic purpose.” Similar to findings from Perry (2011), our NMs viewed what they referred to as “blurred boundaries,” or boundary crossings, although often undertaken with the best of intentions, as potential threats to patients, their families, the nurses, and the unit as a whole. NMs’ vigilance for this type of inappropriate behavior grew out of a knowledge that professional nurses were at risk for boundary violations in settings where they had long-term therapeutic relationships with patients and families, such as in a pediatric oncology nursing hospital unit (Hanna & Suplee, 2012). The goal of NMs in the current study was to support and develop the nurses on their unit so that they could provide skilled and compassionate care. The NMs viewed monitoring for and addressing blurred boundaries and boundary crossing proactively and “in the moment” as a key component of their NM role. Rather than using a punitive approach, the NMs asserted that an approach built on prevention, education, self-reflection, and intervention with nurses perceived as being at risk for blurred boundaries was most effective in maintaining therapeutic professional relationships with children and families (Hanna & Suplee, 2012).

Furthermore, achievement of high-quality PC/EOL care and communication outcomes with pediatric oncology patients and families may contribute to NM satisfaction and intent to stay in their role. NMs’ commitment to provide PC/EOL support to staff nurses is an example of a key NM leadership quality. Four other key NM leadership strategies were discussed: (1) fostering continued PC/EOL education of staff nurses, (2) ensuring sufficient staffing numbers to provide high-quality nursing care to pediatric patients on the unit, (3) balancing sufficient unit staffing numbers to allow nurses time to attend pediatric patients’ funerals, and (4) promoting bereavement support for grieving staff nurses after the death of a pediatric patient. Consistent implementation of these NM leadership strategies may also lead to increased job satisfaction and retention of staff nurses and NMs in the hospital setting (Hewko, Brown, Fraser, Wong, & Cummings, 2015). Furthermore, implementation of these strategies may also foster an environment that encourages staff nurses to consider a future nursing leadership position.

Implications

The findings from this study inform pediatric oncology clinical practice, research, and education. Enhancing nurses’ resilience or ability to optimize communication and manage the challenges of caring for children during PC/EOL can be achieved with individual and institutional interventions (see Table 2 for resources). Recognition of NMs’ key role in creating a caring culture for PC/EOL communication in pediatric oncology, and exemplars from this study, can be used as a rationale to increase the leadership skills of new NMs. In practice, the risk of boundary crossing with patients and family members by nurses is present in pediatric oncology health care settings. Institutional resources such as the position statement, video, and case studies supplied by the National Council of State Boards of Nursing (2014) as well as the “Palliative Care: Conversations Matter®” materials from the National Institutes of Nursing Research can help NMs in oncology nursing and other nursing specialties address this issue (see Table 2). Although not addressed directly by the NMs in this study, use of social media by nurses is another vehicle for boundary violations with patients and families in today’s care environment. Engaging staff nurses via shared-governance structures in setting unit and hospital policies for boundary issues and social media is a critical institutional intervention. Interventions that enhance nurses’ resilience, such as “positive rounding”; initiatives that address what is going well on the unit; and strategies that enhance gratitude have been shown to increase resilience in all health care providers (see Table 2). Enhancing this protective factor can enhance PC/EOL communication.

Table 2.

Resources to Enhance Communication During Palliative Care/End of Life.

National Institute for Nursing Research, National Institutes for Health (NINR/NIH)

Palliative Care: Conversations Matter® (2014). Resources for health care providers and parents: • The Palliative Care: Conversations Matter® customizable tear-off pad • The Palliative Care: Conversations Matter® campaign videos • Example: “Care for Children With Serious Illnesses”—a short video that provides a straightforward overview of pediatric palliative care for families, providers, and organizations. The video uses an animated approach to guide viewers through the services that pediatric palliative care encompasses. • Palliative care for children: Support for the whole family when your child is living with a serious illness   ° Pediatric Palliative Care At-a-Glance fact sheet. Retrieved from https://www.ninr.nih.gov/sites/files/docs/NINR_508c_AtaGlance.pdf National Council of State Boards of Nursing (NCSBN) Professional Boundaries Resources The NCSBN has a variety of resources pertaining to professional boundaries: • NCSBN. (2014). A Nurse’s Guide to Professional Boundaries. Chicago, IL (copies of this 12-page brochure can be ordered through Communications@ncsbn.org) • The “Professional Boundaries in Nursing” video addresses the continuum of professional behavior and the consequences of boundary crossings, boundary violations, and professional sexual misconduct. Internal and external issues, including social media, are explored. • The “Professional Boundaries in Nursing” online course was developed as a companion to the video. The cost of the course is $30. 3.0 contact hours are awarded on completion. The course is approved by the Alabama Board of Nursing. Register for the course at learningext.com. Other resources can be found at ncsbn.org/1615.htm. • “A Nurse’s Guide to the Use of Social Media” (brochure) and “Social Media Guidelines for Nurses” (video) • All can be downloaded in PDF or videos accessed at https://www.ncsbn.org/professional-boundaries.htm Duke Patient Safety Center A center that provides resources for training, research, and implementation in patient safety and quality. Central to patient safety is health care provider resilience. • Courses:   ° “Enhancing Caregiver Resilience: Burnout & Quality Improvement” • Institutional interventions that address interdisciplinary team communication:   ° TeamSTEPPS 2.0, an evidence-based approach to team performance • Webinars (video via YouTube):   ° “Bite Sized Resilience: Three Good Things”   ° “How to Be More Resilient With WISER” • All can be accessed at http://www.dukepatientsafetycenter.com/ The Initiative for Pediatric Palliative Care (IPPC) The IPPC is a research, quality improvement, and education effort aimed at enhancing family-centered care for all children living with life-threatening conditions. IPPC seeks to enhance the capacity of children’s hospitals to optimize care.a Several of the resources are available at no cost for noncommercial use within a single institutional setting. • The five-model IPPC curriculum aims to assist pediatric health care professionals in their mission of providing the highest quality of care to children and their families. Modules include “Engaging With Children and Families,” “Relieving Pain and Other Symptoms,” “Analyzing Ethical Challenges in Pediatric End-of-Life Decision Making,” “Responding to Suffering and Bereavement,” and “Improving Communication and Strengthening Relationships.” • Continuity-of-care tools and resources (available at no cost) • As an award-winning DVD series portraying children, families, and professional caregivers in a range of settings addressing the concepts of the curriculum (available for a cost) All can be accessed at http://www.ippcweb.org/ Association of Pediatric Hematology Oncology Nurses (APHON) APHON is an organization that supports nurses and their practice to optimize outcomes for children, adolescents, and young adults with cancer and blood disorders, and their families. An especially useful resource is APHON Position Paper on Social Media in the Workplaceb

^aSolomon, M. Z., Dokken, D. L., Fleischman, A. R., Heller, K., Levetown, M., Rushton, C. H., . . . Truog, R. D. (2002). The Initiative for Pediatric Palliative Care (IPPC): Background and goals. Newton, MA: Education Development Center. Retrieved from http://www.ippcweb.org/initiative.asp ^bBoyce, T. L., Davis, M. M., Gerdy, C., & Pool, A. (n.d.). APHON position paper on social media in the workplace. Retrieved from http://aphon.org/UPLOADS/Education/pp6.pdf

In addition, the data suggest that pediatric hospital administrations can optimize nursing care of pediatric patients by providing support for their staff nurses and NMs during difficult PC/EOL care situations. Seeking input from both staff nurses and NMs about helpful support strategies for their specific unit is also critical. Institutional interventions that address interdisciplinary team communication (e.g., TeamSTEPPS 2.0; see Table 2) can enhance inter- and intradisciplinary PC/EOL communication.

Future research should focus on evaluation of NM perspectives about (a) the needs of staff nurses that may affect the quality of nursing care for children with other serious conditions who are receiving PC and/or EOL care; (b) individual and institutional interventions that enhance nurses’ resilience and skill in communicating at PC/EOL; and (c) factors that may affect the retention of staff nurses employed in pediatric oncology settings. Additionally, research that tests interventions to improve EOL communication between families, children, and health care providers and delineates the NM’s role in these interventions should be a priority. Integrating PC/EOL communication and care at all levels of nursing education remains a critical need. Research is also needed to determine the impact of PC/EOL-focused nursing education initiatives. For example, the focus of entry-level education programs for nurses should include skills to engage in PC/EOL discussions with pediatric oncology patients and family members. Additionally, graduate education programs for nurse leaders should focus on their ability to provide timely and effective support to staff nurses, in order to deliver high-quality PC/EOL care and bereavement support to staff nurses after the death of a child.

Limitations

A potential limitation of this study was that the organizational structure, nursing models, job descriptions, and PC services in the three hospitals differed. Although the NMs had different titles, all had unit leadership and managerial responsibilities. For example, a charge nurse may have had “supervisory responsibilities” in one hospital but not in the others. However, the commonalities across experiences of PC care of the NMs reported here were derived from all NM participants supervising care on the clinical units. The three hospitals were large Midwestern children’s hospitals and Magnet® designated. Thus, the results may not reflect nurses working in smaller hospitals, those without the resources that a Magnet®-designated institution has, or nurses practicing in other parts of the United States or other countries. In addition, the same interview guide and procedures were used across the focus groups in the larger study. The interview guide did not include questions directly addressing communication issues specific to NMs or the impact of communication issues on the NM’s role and function. Because the NMs clearly identified PC/EOL communication issues from their perspectives as NMs, future research that directly addresses the multiple components of the NM’s role would increase our knowledge of the specific skills and needs of this group. However, the data from this study reflected different perspectives from both the novice and the experienced nurses in the larger study and thus may have identified the most salient themes for NMs in pediatric oncology settings. Finally, the sample was relatively small and lacked diversity. Capturing similar findings in a larger, more ethnically diverse sample of NMs with similar job descriptions is warranted.

Conclusion

The NMs described how they fostered a caring climate by balancing the needs of individual families and their nursing staff. They were constantly vigilant for opportunities to enhance PC/EOL communication and promote family-centered care on their unit. They were thoughtful in developing strategies to create a competent and caring workforce capable of effective PC/EOL communication. Data from this study further explicate the role, strengths, and challenges of NMs in PC/EOL care, delineating their creativity, their impact on both the nurses and the families on their unit, and the resources they identify as needed to develop their staff. These data should be used by nursing administrators to advocate for the role of NMs in PC/EOL care. Nurse educators who are teaching both basic PC/EOL communication and graduate courses in nursing leadership should use the findings of this study to ground students in the realities of PC communication in clinical practice.

Author Biographies

Kathleen J. Sawin, PhD, CPNP-PC, FAAN, is a nurse scientist at the Children’s Hospital of Wisconsin, Milwaukee. She is a professor emerita at the College of Nursing, University of Wisconsin-Milwaukee. At the time this research was conducted, she held the Joint Research Chair in the Nursing of Children, a position sponsored by Children’s Hospital of Wisconsin and University of Wisconsin-Milwaukee.

Kathleen E. Montgomery, PhD, RN, PCNS-BC, CPHON, is a clinical nurse specialist at the American Family Children’s Hospital, Madison, Wisconsin.

Claretta Yvonne Dupree, PhD, BSN, RN, MSN, is a captain (retired) of the U.S. Navy. She is the chairperson of the Center for Bioethics and Human Dignity, Academy of Fellows and Adjunct Professor of Advanced Bioethics at Trinity International University, Deerfield, IL.

Joan E. Haase, PhD, RN, FAAN, is Holmquist Professor in Pediatric Oncology Nursing at Indiana University, School of Nursing, Indianapolis.

Celeste R. Phillips, PhD, RN, is an assistant professor at Indiana University, School of Nursing, Indianapolis.

Verna L. Hendricks-Ferguson, PhD, RN, FPCN, FAAN, is a professor at Saint Louis University, School of Nursing, St. Louis, MO.