Journal of Nursing Education

Research Briefs 

End-of-Life Nursing Knowledge Among Nursing Students

Lucia G. Carvalho, MSN, RN-BC; Heather M. Hamilton, PhD, RN; Mary Ellen Burke, DNP, CNM, CNE; Carl McDonald; Stephanie Griggs, PhD, RN

Abstract

Background:

The U.S. health care system is poorly designed to meet the needs of patients at the end of life (EOL) and their families. Nursing students often have reported feeling inadequate to provide EOL care.

Method:

Following an EOL simulation, reflective journals were collected from junior and senior nursing students and analyzed for themes using qualitative content analysis. The condensed meaning units were abstracted into codes based on Carper's fundamental patterns of knowing.

Results:

Thirty-one junior and senior nursing students (mean age, 21.04 ± 0.52 years, 96.2% female) in a baccalaureate program participated in the study. The broad themes of student reflections included empirics (theoretical or natural historical) aesthetics (transformative nursing action), personal (interpersonal process of nurse-patient interaction), and ethics (emotion influences actions).

Conclusion:

Student perception and participation in all roles contributes to the gestalt of the experience of a highly emotional EOL simulation for both students and faculty. [J Nurs Educ. 2020;59(3):154–157.]

Abstract

Background:

The U.S. health care system is poorly designed to meet the needs of patients at the end of life (EOL) and their families. Nursing students often have reported feeling inadequate to provide EOL care.

Method:

Following an EOL simulation, reflective journals were collected from junior and senior nursing students and analyzed for themes using qualitative content analysis. The condensed meaning units were abstracted into codes based on Carper's fundamental patterns of knowing.

Results:

Thirty-one junior and senior nursing students (mean age, 21.04 ± 0.52 years, 96.2% female) in a baccalaureate program participated in the study. The broad themes of student reflections included empirics (theoretical or natural historical) aesthetics (transformative nursing action), personal (interpersonal process of nurse-patient interaction), and ethics (emotion influences actions).

Conclusion:

Student perception and participation in all roles contributes to the gestalt of the experience of a highly emotional EOL simulation for both students and faculty. [J Nurs Educ. 2020;59(3):154–157.]

The U.S. health care system is geared to provide curative care and is poorly designed to meet the needs of patients at end of life (EOL) and their families (American Nurses Association [ANA], 2016; Meghani & Hinds, 2015). There is a call to action to improve EOL education and to integrate palliative care into nursing academic programs (American Association of Colleges of Nursing [AACN], 2016; ANA, 2016; Institute of Medicine [IOM], 2014). Nursing students frequently report feeling inadequately prepared in death and dying content and in providing EOL care for patients of all ages (Allen, 2018; Ferguson & Cosby, 2017; Jeffers, 2018). There is an abundance of literature supporting the lack of formal EOL education and training for nursing students (Allen, 2018; Carmack & Kemery, 2018; Jeffers, 2018; Ladd, Grimley, Hickman, & Touhy, 2013). In one quasi-experimental study (Jeffers, 2018), the majority of nursing students (83%) reported they received no formal education on EOL care. In another quasi-experimental study of 161 junior and senior nursing students, 71.4% experienced significant psychological stress following an EOL simulation (Allen, 2018). This psychological stress indicates that more preparation on how to handle EOL experiences is warranted.

It is important for educators to keep in mind that nursing student clinical experiences vary greatly, with the majority of students encountering few hospice or palliative care experiences (Jeffers, 2018). Therefore, educators may consider simulation as a means to prepare nursing students for EOL care. Simulation is a safe environment where students can develop competence and assessment skills in EOL care (Carmack & Kemery, 2018; Ladd et al., 2013). Fidelity in simulation is the degree to which a simulated learning experience approaches reality (Smith et al., 2018). Although high-fidelity simulations with mannequins have been shown to increase learners' knowledge (Moreland, Lemieux, & Myers, 2012), there are physical limitations in both high- and low-fidelity EOL simulations as a mannequin cannot demonstrate nonverbal communication (Hjelmfors, Stromberg, Karlsson, Olsson, & Jaarsma, 2016; Smith-Stoner, 2011). In one descriptive study, nursing students reported being unsure if what they were hearing and seeing was actually meant to represent EOL pathophysiology (Montgomery, Cheshire, Johnson, & Beasley, 2016). Although high- or low-fidelity simulations may be helpful in providing exposure to EOL for nursing students, educators should keep in mind that the mannequin does not elicit accurate human emotional responses and nonverbal cues. An alternative approach to using mannequins is live simulation where students can role-play scenarios (Shaw & Abbott, 2017; Shields, 2011). An advantage to using live simulation is the ability to focus more on the art of communication in EOL care.

The purpose of this qualitative descriptive study was to understand nursing students' knowledge gained from a live simulated EOL experience. Data were obtained from students' written journals through a structured reflection template using Carper's fundamental patterns of knowing in nursing (1978): empirics, the science of nursing; esthetics, the art of nursing; personal knowledge in nursing; and ethics, moral knowledge in nursing. According to Carper (1978), knowledge “involves critical attention to the question of what it means to know and what kinds of knowledge are held to be of most value in the discipline of nursing” (Carper, 1978, p. 13).

Method

Study Design

A qualitative descriptive approach was used for data generation (Sandelowski, 2010). Institutional Review Board approval was obtained from the University of Massachusetts Amherst (Protocol ID #2018-4623). Informed consent was obtained by a research assistant or co-investigator who was not directly involved with the simulation. Students were informed of the study during their community health clinical course. The primary investigator was not the faculty of record for the course. Participation in this study was voluntary and had no effect on students' evaluation. Students created a unique identification number, and student journals were deidentified before data analysis.

Baseline questionnaire data were collected using Research Electronic Data Capture (REDCap) (Harris et al., 2009) hosted at the University of Massachusetts Amherst. The written reflection was completed after the simulation and collected on the course management site; students were provided a unique identification code in the entry to protect anonymity. Group size in the simulation ranged between six and eight participants. Reflective questions included:

  • What knowledge did or should have informed me? (Empirics)
  • What was I trying to achieve? (Aesthetics)
  • Why did I respond as I did? (Aesthetics)
  • What were the consequences of that for the patient, others, and myself? (Aesthetics)
  • How was this person(s) feeling, and how did I know this? (Aesthetics)
  • How did I feel in this situation? (Personal)
  • What internal factors were influencing me? (Personal)
  • How did my actions match with my beliefs? (Ethics)
  • What factors made me act in incongruent ways? (Ethics)

Setting and Participants

All junior and senior nursing students scheduled for an EOL simulation (N = 32) were invited to complete a baseline demographic questionnaire, a postsimulation program evaluation, and written guided reflection with cue questions. The simulation occurred in a simulated home environment on campus. Students were offered the opportunity to play a role (hospice nurse, nursing student, patient, family member, chaplain or spiritual counselor, and student observers) and participated in two scenarios during a pre-briefing session. Students participated in the same role for both scenarios, and scenarios were 30 minutes in length, with 30 minutes for pre-briefing and 10 minutes for debriefing. Faculty served as a facilitator and first described the EOL simulation, then asked volunteers to serve in the various roles during a pre-briefing session (20 minutes).

The live EOL simulation scenario depicted a 67-year-old Chinese-American woman diagnosed with small cell lung cancer and metastasis to the bone-right femur. The first scenario was a patient experiencing a sudden decline and near the EOL, and the second scenario focused on the actual death, what happens after death, and how to support the family. Following the EOL simulation, debriefing included a postsimulation “huddle” in the simulation room. During the debriefing, students stood side-by-side with faculty, and the students explored their feelings regarding their roles and their interactions with other students during the simulation.

The objectives for the simulation were to analyze assessment findings; manage EOL symptoms; demonstrate interdisciplinary collaboration; assess physical, psychological, social, and spiritual needs; promote comfort care; and assess and assist the patient and family coping with EOL care. The objectives of the simulation were consistent with International Nursing Association for Clinical Simulation and Learning (INACSL) Standards of Best Practice (2016).

Data Analysis

There were five members of the research team (four nurses and one nursing student conducting research for an honors thesis). One team member was a board-certified case manager and hospice director, two team members were scientists trained in qualitative methods, one team member was trained in simulation education, and two team members had a clinical background in EOL nursing care. Reflective journals were analyzed by all team members for themes using qualitative content analysis (Graneheim & Lundman, 2004).

The journal transcripts were read first in their entirety to gain a sense of the whole. Meaning units were identified and condensed. The condensed meaning units then were abstracted into codes based on Carper's fundamental patterns of knowing (1978), maintaining the core meaning of participant responses. Codes were applied to the transcripts along with word frequency counts in a Microsoft® Word document and with NVivo (version 11) coding software. Data were analyzed using qualitative content analysis with a low level of interpretation applied to remain close to the data and to accurately describe each reflection, as suggested by Sandelowski (2010). Researchers conducted the coding individually.

Codes from individual statements were moved from one category to another until an agreed-on fit from the team members was achieved. Comparisons were made across categories. To maintain trustworthiness, the authors discussed the text, meaning units, codes, and categories continuously throughout the interpretation process (Lincoln & Guba, 1985). Demographic data were analyzed using SPSS® version 25.

Results

Participants

A total of 31 students participated in the EOL simulation study (96.9% response rate). Most of the students were female (96.2%) and Caucasian (73.1%). Other races included Asian (19.2%) and Hispanic (7.7%). Mean age of participants was 21.04 ± 0.52, and mean grade point average (GPA) was 3.70 ± 0.20. The majority of students reported having previous health care experience (73.1%) and previous experience with death (65.4%), with fewer students reporting past presence with death witnessed firsthand (26.9%).

Themes

Four themes (Table 1) that emerged from the data were:

  • Empirics: theoretical or natural historical knowledge.
  • Aesthetics: transformative nursing action.
  • Personal: interpersonal process of nurse-patient interaction.
  • Ethics: emotion influences actions.
End-of-Life Themes and Sample Quotes

Table 1:

End-of-Life Themes and Sample Quotes

Empirics. In student reflections, theoretical knowledge of the death and dying process and natural historical knowledge from previous and practical knowledge from hospice and general nursing experience was discussed in each reflection. Students reported valuing theoretical knowledge gained from the classroom, various written sources, or an expert in the field. There was high agreement on the importance of natural historical knowledge ideally from a hospice field experience. When students did not have relevant hospice or palliative experiences to draw from, six participants valued “any” nursing experience to guide them in EOL care.

Aesthetics. The theme that emerged related to aesthetics was transformative nursing action where the students actively transformed the simulated patient and the family behavior into a perception of what is significant in it. Within transformative nursing action, the emotions perceived by both the simulated patient and family strengthened the nurse-patient connection (14 participants), their own knowledge of death and dying assisted them in transforming the patient and families' feelings into actions (eight participants), and their knowledge of death allowed for them to provide compassionate care (five participants). Detection of pain and discomfort through patient and family emotions was demonstrated in their responses (nine participants).

Personal. Personal nursing knowledge is related to the interpersonal relationship developed between the nurse and the patient (Carper, 1978). The personal knowledge in death and dying was described as an interpersonal process of interaction between the nurse and the patient. Personal experience of death was described as being helpful in navigating the simulation or as provoking emotions and sadness related to the student's experience or lack of experience with a dying person, either personally or professionally. Lack of personal experience caused either increased discomfort or less discomfort in providing care when students did not have a personal experience of death. Although some students mentioned the care of the patient and the family (six participants), a large number focused more on the family and with less mention of the patient (nine participants).

Ethics. The theme emotion influences actions (seven participants) emerged through the ethics question. Emotion influences actions encompasses the emotions shown by the nurse, patient, and family. These emotions are influenced by actions taken by the nurse in caring for the family. Students reflected on their emotions and deliberately choose to do “right,” which is a deliberate and voluntary action taken in the best interests of patients and their families. The students also deliberately choose not to do “wrong,” which would cause patients and their families distress.

Discussion

The results of student reflections supported the notion that the integration of EOL simulation through role-play was an effective learning tool and teaching method. Students acknowledged their discomfort in the emotions that were evoked during the simulation and how that would impact their future practice in caring for patients at EOL and their families. Previous research noted there are several limitations to high-fidelity simulation as mannequins cannot communicate nonverbally (Hjelmfors et al., 2016; Smith-Stoner, 2011; Smith et al., 2018). Participating in this role appeared to bring about a deeper understanding and greater meaning in EOL care for the students in this study. For example, one participant who played the role of the dying patient stated, “I could understand what a difference a good hospice nurse makes…. If it was all up to the family, the patient might not have all of their wishes carried out because family can be too emotional or not able to handle the situation.”

A few limitations should be considered within the context of interpreting the results. First, data were collected from a group of students at one large public university in the Northeast. Findings may not be generalizable to schools in the private sector or in other geographic locations. Second, students were primarily Caucasian (73.1%) and female (96.2%) with high academic achievement (mean GPA, 3.70 ± 0.20). These demographics reflect the composition of the nursing profession in the United States (Smiley et al., 2018).

Conclusion

A deeper knowledge gained through reflection was explored through Carper's fundamental patterns of knowing (1978) framework. As noted by Brown (2018), our greatest learning and growth comes from being present through the discomfort of our experiences. We suggest further study in the field to include exploring students in the role of the dying patient and to examine the effectiveness of taking on this role through EOL simulation.

References

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End-of-Life Themes and Sample Quotes

End-of-Life ThemesSample Quotes
Empirics – Theoretical“The culture and end-of-life worksheets, simulation scenarios, and lectures on hospice and palliative care informed me and gave me knowledge for this simulation.”
Empirics – Natural historical“The knowledge I have of hospice care from working in the field helped to inform me of how to act in this type of situation.” “My knowledge on hospice care and the physical manifestations of death informed me in this situation.”
Aesthetics – Transformative nursing action“Family was very overwhelmed and scared, had lots of questions, and needed to be prepared for what to expect.” “I responded in a way that any family member would. You could imagine the pain, and having lost a family member myself, so I know the pain and what it feels.”
Personal – Interpersonal process of nurse-patient interaction“I think my own experience with personal loss made me feel the way I did.” “Some internal factors that may have been influencing me were my lack of personal experience with death. If I had personal experience in a situation like this, I may have felt more uncomfortable or anxious in the scenario.” “I wanted the patient's wishes to be upheld. I wanted them to be comfortable and pain free.”
Ethics – Emotion influences actions“I believe that although we may feel sad and empathetic in a situation like this (death), it is important to put the patient and the family before our emotions.” “Understanding that it was my job to make the patient and family feel comfortable and at peace at the end-of-life made me do my best to suppress my own feelings of anxiety and try not to show them my discomfort.”
Authors

Ms. Carvalho is Clinical Instructor, Dr. Hamilton is Clinical Assistant Professor, Dr. Burke is Clinical Assistant Professor, and Mr. McDonald is Commonwealth Honors College student, University of Massachusetts Amherst College of Nursing, Amherst, Massachusetts. Dr. Griggs is Clinical Assistant Professor, University of Massachusetts Amherst, College of Nursing, Amherst, Massachusetts, and Postdoctoral Fellow, Yale University School of Nursing, West Haven, Connecticut.

Dr. Griggs received funding from the National Institute for Nursing Research (T32 NR0008346).

The authors have disclosed no potential conflicts of interest, financial or otherwise.

The authors thank Elizabeth Radcliffe for her assistance in coding the transcripts.

Address correspondence to Stephanie Griggs, PhD, RN, P.O. Box 27399, West Haven, CT 06516-0972; e-mail: sgriggs@nursing.umass.edu.

Received: August 17, 2019
Accepted: November 04, 2019

10.3928/01484834-20200220-06

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