A fundamental area of nursing practice consistently challenging for nursing students is that of caring for dying patients. Nurse educators strive to prepare students for the complexities associated with this significant aspect of nursing care and consistently revise curricula to assimilate current trends and evidence. Despite these ongoing efforts, nursing students and nurses continue to demonstrate a lack of confidence and retention of content related to the care of dying patients (Banerjee et al., 2016; Schlairet, 2009). Educational preparation of nurses must include a focus on end-of-life (EOL) care that provides students with a base level of comfort and confidence as they begin their careers.
The lack of focus on EOL care in nursing education has been widely discussed in the literature for decades (Schlairet, 2009; White & Coyne, 2011). A plethora of resources is available to support nurse educators in addressing this content in programs (American Association of Colleges of Nursing, 2015; American Nurses Association, 2010; Institute of Medicine [IOM], 2015; National Hospice and Palliative Care Organization, 2016). However, the application of these resources in nursing education continues to be limited (IOM, 2015; Wallace et al., 2009). In addition, text content often is rudimentary and student exposure to the psychosocial aspects of dying is inadequate.
Contributing factors may stem from the demographics of students. Nursing students often are young and healthy and focused on starting their careers and families, and they tend to perceive the profession of nursing as one centered on healing rather than dying. Despite the inevitability of death from inception, the discussion of death is one that is often difficult and thus avoided. Personal views of death stem from varied cultures, spiritual beliefs, and experiences (Abu-El-Noor & Abu-El-Noor, 2015). This further complicates the educational process as students present with diverse perspectives and may eschew divergent EOL views.
The IOM (2015) report, Dying in America, identifies challenges and opportunities for health care providers to enhance quality of care delivered at EOL. Challenges include changing demographics, barriers to care, and system problems; opportunities include increasing use of electronic health records, support and involvement of patients and caregivers, and development of quality measures for care accountability. The IOM outlines 12 core competencies for providing quality EOL care; five of these core competencies directly relate to effective management of emotional and spiritual distress. The American Nurses Association (2010) denoted similar competencies in their recommendations for EOL nursing care.
Despite educators' efforts to integrate these recommendations and guidelines into curricula, the literature indicates that nurses and nursing students continue to struggle with EOL care (Banerjee et al., 2016; Schlairet, 2009). This implies there may be a disconnect between what educators believe is addressed in their respective programs and what nursing students perceive they learned. Nurse educators may view EOL care as an area students will learn on the job through repeated exposure. Unfortunately, this is not always the case, as nurses tend to avoid working with patients near EOL or live with feelings of anxiety, inadequacy, or guilt when faced with situations for which they feel unprepared (Wallace et al., 2009; White & Coyne, 2011; Wolf et al., 2015). Although the IOM (2015) report noted there have been improvements in education since publication of earlier reports, this has not translated to greater competence in caring for the dying. The IOM's current recommendations for educators include increasing focus on communication skills and interprofessional collaborations for health care providers across the spectrum.
The nursing program at the author's institution integrated EOL content across the curriculum. For the purposes of this study, the definition of EOL care is providing holistic, supportive care to patients and families faced with progressive and incurable illnesses. An introduction to EOL care occurs early in a fundamentals course, and students have subsequent exposure to EOL care practices in clinical rotations each semester of the program. Further elaboration on EOL care concepts occurs in mental health, critical care, and community health nursing didactic courses. Two hours during the mental health course are devoted to communication with patients and families at EOL, and a 2-hour simulation on the ethical aspects of EOL care is included in the critical care course. However, despite this intentional integration of EOL learning experiences, anecdotal student comments indicated to faculty members that students continued to feel unprepared for practice in this area.
Numerous studies have explored nurses' or nursing students' knowledge and attitudes related to EOL care, as well as the impacts of single-point educational interventions on students' learning (Abu-el-Noor & Abu-el-Noor, 2015; Banerjee et al., 2016; Bailey & Hewison, 2014; Erickson, Blackhall, Brashers, & Varhegyi, 2015; Gilliland, 2015). However, less is known regarding how students perceive their overall nursing education when integration of EOL content occurs throughout the curriculum. Despite achievement of learning outcomes on tests and simulated experiences, students in the author's program often expressed anecdotally that they felt uncomfortable with EOL care. The purpose of this study was to understand final-semester nursing students' perceptions of personal comfort and knowledge deficits regarding EOL care to improve the curriculum in this area.
This pilot study used a primarily phenomenological qualitative approach, and descriptive statistics to a lesser degree. The university's institutional review board gave approval for the study. A questionnaire based on the unique needs of the nursing program studied was developed by the researcher. Questions were reviewed by two other individuals with knowledge of EOL care and qualitative and survey methods in an effort to reduce bias or leading questions and improve overall trustworthiness of the tool. A convenience sample of three cohorts of baccalaureate nursing students in their final semester was asked to participate in this study. Extra credit was offered to those who took part in the survey; however, an alternative extra credit opportunity was provided so that students would not feel coerced to participate.
Seventy-one of 82 (87%) students responded to an online survey that consisted of narrative questions as well as Likert scale questions. Participants included two traditional cohorts and one accelerated second-degree cohort from three consecutive semesters who received the survey during the final weeks of their nursing program. Student participants completed the questionnaire anonymously to encourage honest responses and to reduce potential bias that could occur if participants knew the researcher was aware of their identities. In addition, participants responded to both narrative and Likert scale questions that were similar in content. This allowed cross-checking of participant responses in an effort to improve the rigor and trustworthiness of the study.
Narrative questions were open ended and reflective in design to promote in-depth responses. Participants also were asked to rate their level of comfort or knowledge in a given area using a Likert scale. Questions pertained to participants' perceived feelings of preparedness, areas in which they felt confident or not confident in delivering care, concerns they had regarding provision of care to a dying patient, and areas they felt the program needed to address at greater depth. Participants ranked personal perceptions related to how the nursing program prepared them for various aspects of EOL care.
Participants' narrative responses were repeatedly reviewed and subsequently coded using qualitative methods, which resulted in identification of themes. Descriptive statistics included means and percentages based on the Likert scale responses.
The survey tool included six questions that required students to rate their perceived abilities and degree of preparation for providing care to patients and families at EOL. Ratings were provided on a Likert scale ranging from 1 to 10, with 10 being most positive and 1 being least positive. The Table displays rank percentages for each of the six questions. Initial findings from the data seemed to suggest the majority of students felt well prepared and comfortable in providing both physical and emotional care to patients and families. The ratings were similar between accelerated second-degree students and traditional students. More than 80% of participants rated their level of comfort in providing physical care and their ability to provide quality care to a dying patient as 6 or higher. More than 70% of participants rated their personal level of knowledge related to EOL care as 6 or higher, and nearly an equal percentage rated the degree to which the nursing program prepared them for providing physical EOL care to patients as 6 or higher. Fewer participants perceived a level of comfort in providing emotional care to a dying patient and the degree to which they thought the nursing program prepared them to provide emotional care (57% and 58%, respectively).
Participant Rankings on Likert Scale Questions
Narrative questions that followed were useful in determining student perceptions related to each of these areas at a much deeper level. Participant responses revealed that an overwhelming number felt uncomfortable and ill prepared to handle family situations that arose during EOL care. This correlates to the percentages of participants who rated the emotional care questions at a lower rank, although narrative responses seemed to indicate the majority of students ranked knowledge levels as higher than what their actual experiences would suggest. This implies that students may have the knowledge of how to physically and emotionally care for patients and families, but they feel uncomfortable in how to apply that knowledge in the actual setting.
Several themes became readily apparent in the analysis of data. Participants felt confident to provide physical care at EOL. Many students noted similar feelings such as, “I can help ease the patient's suffering and help promote comfort,” and “I'm confident in providing palliative care for the patient (mouth care, turning, etc.).” However, a second theme that emerged was a lack of confidence in provision of emotional care to patients and families. “I am concerned that I will not know what to say in the end of life for a patient or that I may say the wrong thing.” Other comments further supported this theme, including, “What is the correct thing to say? Should you give them space or be around often?”, and “What do you say to a patient that states he/she is not ready to let go?”
A third theme that emerged was that participants experienced stress and had a lack of knowledge when caring for families. One participant noted, “Having to try to cope with the family is tough for me. There are a lot of emotions that make it hard.” Students noted that education should increase in areas such as “how to talk to the family” and “how to help the family say good bye and not be in the way of that.” Participants also expressed concern regarding families who were in disagreement about care provided; one student noted, “half of them were fighting, getting in the nurse's way.... I'm just worried about handling confrontation.”
A commonality among participants was a concern that they would become too emotionally involved with patients and families. Participants shared concerns about handling their own emotions during EOL care situations. Comments included, “I never know what to say, and cry when I see other people cry!” and “I am also an emotional person, so it could be hard for me to not cry in this type of situation, even if I didn't really know the person or their family.” One participant noted, “If the family is having a hard time letting go, it's so hard to see that, and I am not a strong person emotionally.”
Finally, participants with a history of personal experience in EOL perceived greater comfort in providing care. Participants expressed much more confidence if they had experienced a death within their own family or had experience with EOL care as a health care technician. Participants often noted they did not build on such experiences from their coursework. Comments included, “I have experience from a previous job, but I don't feel prepared from nursing school” and “I feel very prepared in caring for the patient...during end of life, mainly because as a nurse aid [sic], I have had experience.”
The intent of this study was to understand nursing students' perceptions of personal comfort and knowledge deficits related to EOL care, with an end goal to improve the prelicensure curriculum based on the findings. It is common for nursing students to experience lack of confidence and apprehension when caring for patients at EOL, and the literature reflects this (Banerjee et al., 2016; Schlairet, 2009). This uncertainty can follow nurses into the practice setting, where the fast pace and sometimes limited guidelines may inhibit the ability to provide quality EOL care (Wolf et al., 2015). Creating opportunities for interdisciplinary workshops focused on EOL communication and collaboration may increase students' confidence and attitudes (Erickson at al., 2015). Wallace et al. (2009) found that assimilating the End-of-Life Nursing Education Consortium (ELNEC) content throughout the curriculum enhanced students' learning outcomes in this area. Hospice clinical rotations also can improve nursing students' attitudes toward EOL care (Gilliland, 2015). This indicates that intentional inclusion of interdisciplinary simulations that use available EOL resources may be effective in enhancing students' confidence in providing emotional care to patients and families and could improve overall attitudes toward EOL care.
Lack of confidence and fear of interacting with patients and families can restrict nurses from providing quality care at EOL. These emotions also may lead to a shortage of nurses who choose to practice in this specialty area at a time when the aging population is growing. The IOM (2015) report Dying in America indicated that education for nurses should include greater focus on EOL care and that licensure examinations should have an associated increase in focus. It is critical that nursing programs determine best approaches to educating students to ensure EOL content aligns with needs, as cited in the literature and revealed in students' feedback. Integrating EOL exercises into nursing curricula (Wolf et al., 2015) and continued educational offerings for practicing nurses are recommendations (Wochna-Loerzel & Conner, 2014).
Finally, increasing the focus on psychosocial aspects of EOL in a variety of care situations may help students feel more comfortable in relating effectively with patients and families. Bailey and Hewison (2014) found that the use of case studies based on real patient situations could significantly improve nursing students' attitudes toward EOL care. High-fidelity simulations that incorporate post-mortem care and address associated emotions experienced during EOL care also has been shown to heighten students' level of comfort (Bartlett & Thomas-Wright, 2014). Assimilating case studies and simulated experiences that are based on actual situations could alleviate student fears related to interactions with family or becoming too emotionally involved and lead to greater confidence in providing EOL care. Themes identified in this study indicated that students have a lack of confidence and experience stress when providing emotional care and support to patients and families at EOL. Students' confidence levels may be enhanced and stress could be reduced by providing simulated personal experiences.
This study was conducted at a single school of nursing in an effort to understand aspects of EOL care for which students felt unprepared. The majority of the student participants were women between the ages of 20 and 30. Given these circumstances, obvious limitations exist, with an associated inability to generalize findings. However, it does help inform other schools as to considerations in reviewing their own content and outcomes related to EOL care. Although faculty at this school of nursing intentionally integrated EOL care across the curriculum, students' perceptions did not always support that learning had occurred or that they had achieved a greater level of confidence in caring for patients at EOL.
It is important for faculty to garner feedback from students that complements outcome measures. Measuring levels of student anxiety and confidence with anonymous self-reporting is one way of determining growth. Nurse educators must ensure that students have an opportunity to share feedback that will inform curriculum work and improve learning outcomes and perhaps lessen the often unrecognized fears students harbor related to EOL care.
Nurse educators continue to strive to prepare students to provide holistic EOL patient care. This can be challenging, particularly with already content-laden curricula. It is imperative that educators evaluate students' perceptions of comfort in caring for patients and families at EOL. Nurse educators must ensure that students have opportunities to engage in learning experiences that promote confidence and an enhanced ability to care for the physical and emotional needs of patients and their families at EOL.
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Participant Rankings on Likert Scale Questions
|Rate the level of comfort you feel in providing physical care to a dying patient.||10%||18.5%||24%||17%||14%||7%||5.5%||1.5%||0%||0%||2.75%|
|Rate the level of comfort you feel in providing emotional care to a dying patient.||3%||8.5%||12.75%||12.75%||19.75%||14%||12.75%||8.5%||4.25%||0%||4.25%|
|Rate your personal level of knowledge related to end-of-life care.||3%||12.75%||24%||18.5%||12.75%||12.75%||8.5%||4.25%||1.5%||0%||2.75%|
|Rate your perceived ability to provide quality care to a dying patient.||1.5%||11.25%||21%||19.75%||28.25%||7%||3%||3%||1.5%||0%||4.25%|
|Rate the degree to which you feel the nursing program prepared you for providing physical end-of-life care to patients.||1.5%||8.5%||19.75%||19.75%||18.25%||15.5%||5.5%||3%||3%||3%||2.75%|
|Rate the degree to which you feel the nursing program prepared you for providing emotional end-of-life care to patients.||1.5%||4.25%||14%||12.75%||25.25%||14%||14%||3%||7%||1.5%||2.75%|