A Qualitative Study of Perception and Experience Toward End-of-Life Care Among Nursing Students Who Witnessed Dying People in Their Family

Introduction

A considerable number of freshly graduated nurses are not well-prepared to confront death and involve in care during the patients’ final moments. It is argued that nearly all nurses come across patients who are at the end of their lives, and for many nursing students, it may be their initial experience with death.¹ Therefore, it is vital to provide the nursing students with education that focus on shaping a positive attitude toward end-of-life because of the intricate nature of end-of-life care (EoLC). This study explores experience and perception of nursing students when witnessing dying people in the family. Discussions about death and dying are integral to the care of terminally ill patients and their families. The discussion should be initiated by healthcare professionals from the early stage when patients have been decided to have terminal diseases or when initiated by the patient. Therefore, It is crucial for healthcare professionals to feel at ease to discuss such unpleasant and difficult topics with patients and their families.² Nevertheless, many nurses struggled with negative emotions such as anger, doubt, dread, and anxiety when confronted with death and dying.³

Background

EoLC is an integral part of the care trajectory for patients with terminally ill, which assists patients in experiencing a peaceful and comfortable dying process.⁴ EoLC includes providing the patients and their families with physical, emotional, and spiritual care.⁵ EoLC is a complex and challenging task requiring healthcare professionals to have the information, skills, and attitudes to ensure the best possible care outcome.^6,7 Inadequate EoLC can cause patients and their families experience grief, dissatisfaction, and a lower quality of life (QoL).^8,9 As a result, it is critical to explore the experiences and views of healthcare workers, especially nursing students who are the future nursing workforce, regarding EoLC in order to identify gaps and areas for improvement. The nursing students need to be well-prepared and trained to provide high-quality EoLC to their patients and their families. However, nursing students often feel unprepared to deal with EoLC and may have negative perceptions toward EoLC.¹⁰

Although literature on the experiences and perceptions of nursing students in EoLC has been extensively studied,^11,12 there is little on qualitative or exploratory research, especially in Indonesia. Furthermore, most of the existing research focuses on the experiences and perceptions of students in hospitals,^10,12 while their experiences and perceptions in the family environment are less studied. Therefore, more focused research is needed on the experiences and perceptions of nursing students related to EoLC in the family environment in Indonesia, especially involving those who have witnessed death in their own families.

Research on the experiences and perceptions of nursing students who have experienced the death of a family member is crucial in relation to the quality of palliative care and EoLC.¹³ This is because experiencing the death of someone in the family may have an impact on the nursing students’ views and attitudes towards palliative care and EoLC.¹⁴ This experience may affect how they care for patients in the end-of-life phase, including their understanding of symptom management, spiritual, emotional, and social support, as well as their communication skills with patients and their families. The study by Liu et al and Ferguson et al reported the nursing students often feel sad, uncertain, and at a loss regarding how to proceed when providing care for dying individuals, emphasizing the necessity for practical exposure in palliative care.^13,15 Moreover, a study by Garrino et al concluded that the student expressed feelings of sorrow, disbelief, and bereavement after the loss of their loved ones which may experience fear and anxiety when confronted with the complexities of caring for terminally ill patients.¹⁶ In light of these collective insights, exploring the experiences of nursing students who have experienced personal encounters with death becomes essential in improving the quality of palliative care and EoLC.

Through this research, we can further understand how the experiences of nursing students who have witnessed the death of a loved one in their family can influence their perceptions of palliative care and EoLC. The research may informed the development of better EoLC curriculum education and training programs for nursing students that emphasize the students’ readiness to provide better care and meet the needs of patients in the end-of-life phase. Our study also emphasizes the need for emotional support for nursing students who must face the experience of witnessing the death of their family members. Thus, this research will have significant implications in improving the quality of palliative care and EoLC for patients in Indonesia.

Methods

Study Design

This study used a text-based qualitative research design to explore the perceptions and experiences of nursing students towards EoLC in Indonesia.¹⁷ Text-based qualitative research is a methodological approach that centers on the analysis and interpretation of textual data to gain a deeper understanding of human experiences, beliefs, perspectives, and phenomena. This form of qualitative inquiry involves examining written documents, transcripts, or other text-based materials as primary sources of data.¹⁷ A purposive sampling method was used to recruit participants from a public nursing college. The inclusion criteria for participants were the student who enrolled palliative care course, and they had witnessed the dying process of a family member or relative. This study did not restrict the timeframe of the deaths.

Participant and Setting

The final sample size consisted of fifteen nursing students who met the criteria. Most of the students did not have the experience of witnessing the dying process of a family member, while others had the experience but were unable to express their experiences. Out of 165 students, including male and female, were asked to write reflections before palliative care learning, only 15 female students met the criteria. Data were collected through reflective writing on experience in witnessing the death of a family member. Students were given the freedom to fill out the form. All written reflections were in Bahasa Indonesia, the national language of Indonesia. Ethical approval was obtained from the Institutional Review Board before data collection.

Data Collection

Data collection was conducted through asking the nursing students to write about their experiences and perceptions when they witnessed dying people in their family. Students were asked to recall their feelings and experiences through a Google form to keep confidentiality. During the data collection process, students were given the freedom to fill out the form in a place they found comfortable and in a confidential space, with no time constraints, to write about their experiences and perceptions of EoLC. The student and their data that met the criteria were then analyzed, while the data that met the criteria were used as individual reflection data before palliative learning.

The written reflections were analyzed using thematic analysis, and memos were created to record data analysis and generation of themes. Reflective writing has been widely recognized as a crucial element of reflective practice and plays a central role in facilitating experiential learning.¹⁸ Within qualitative research, reflective writing serves as an independent method, a valuable data source, and an integral part of the analytical processes.¹⁸ In the context of this study, reflective writing is used as a data source. However, there is a growing argument that despite its increasing visibility in qualitative research reports, reflective writing should receive greater recognition as a pivotal component in the methodological processes of research studies and be acknowledged as an indispensable element of their methodology.¹⁸ The use of written reflections as a single data collection method allowed for a comprehensive understanding of the participants’ experiences and perceptions regarding EoLC. This understanding is essential for developing effective educational programs for Indonesian nursing students.

Data Analysis

A thematic analysis approach was used to form common themes and patterns in the data for this qualitative study’s data analysis. The process started with reading and re-reading the written reflection of the participants and memo was created to note, and become acquainted with the data. Next, relevant words of words phrases were highlighted and coded based on its similarity, which then were grouped to create initial themes. The initial themes were then refined and categorized to capture the essential aspects of the participants’ experiences and views of EoLC.^19,20 Throughout the analysis, the researchers examined data that contradicted the emerging themes. Any such instances were carefully examined and accounted for in the final analysis. The resulting analysis produced a rich and nuanced knowledge of the participants’ EoLC experiences and perceptions, which can inform the development of tailored interventions to improve EoLC education for nursing students in Indonesia.

Ethical Considerations

This research has assured ethical conduct throughout the research process. All participants were informed of the study’s aim and their right to withdraw from their participation. The informed consent included the publication of anonymized responses. The confidentiality and anonymity were maintained to protect participants’ privacy and dignity. An ethical review board approved the study to ensure the compliance to ethical conduct and law. This study prioritizes ethics to gain insight into nursing students’ views on EoLC while protecting subjects’ rights and welfare. Ethical approval was granted from the Ethical Committee of Health Research, Faculty of Health Science and Technology, Universitas Jenderal Achmad Yani, Indonesia (with ethical number 067/KEPK/FIKTKES-UNJANI/VIII/2022).

Results

Characteristics of Participants

The participants in this qualitative study were 15 female nursing students enrolled in a clinical internship program in a faculty of nursing in Indonesia. The participants in this sample were primarily female, as the majority of nursing students are women, and there were no males who met the criteria nor willing to participate in the study. The mean age of the participants is 23.2 years old (SD 0.41). 93.3% of the participant are Muslim, and only 6.7% are Christian. All participants had witnessed the death of a family member, and the causes of death of the family members varied including cardiovascular disease, stroke, crush injury, cancer, COVID-19, chronic kidney disease, pleural effusion, gout arthritis, hemorrhoids, and unknown causes. These characteristics provide an important context for understanding the experiences and perceptions of nursing students towards EoLC when witnessing a family member’s death. Table 1 is shown in detail the characteristics of the participants.

Table 1 Characteristics of Participants

Study Outcome

Two main themes emerged from this study including (1) student experience witnessing dying people in the family; and (2) student perception toward EoLC. Table 2 displays information on superordinate themes, subordinate themes, and quotes.

Table 2 Superordinate, Subordinate Themes, and Participant Quotes

Theme 1: Student Experience Witnessing Dying People in Family

Sadness

Sadness was depicted by many participants who reported feeling heartbroken and lost after the death of their loved ones (Quotes 1–7). The participants expressed that they struggled to understand and accept the fact that they would never see or interact with their loved ones (Quotes 3, 7). Some participants even reported experiencing prolonged sadness that affected their ability to sleep (Quotes 6).

Disbelief

Disbelief was described by participants who were shocked and struggled to believe that their loved ones had passed away (Quotes 8, 9). Some participants reported feeling confused about how to react initially, eventually leading to tears and sadness (Quotes 8, 9). Another respondent reported feeling sad about the loss and regretful for not being at the side by their loved during the final days of their lives (Quote 9).

Loss

The feeling of loss was described by participants who reported feeling a sense of loss after the death of their loved ones (Quotes 10–12). They described missing the presence and companionship of their loved ones, especially during special occasions such as Eid (Islamic Feast) (Quotes 10). Some participants reported feeling a great loss due to their closeness with their loved ones and struggling to cope without them (Quotes 10–12).

The above findings highlight on the experiences and perceptions of nursing students towards EoLC that emphasizing the emotional impact of witnessing death in the family. The findings suggest that nursing students require adequate support and preparation to manage their emotions which may impact on providing effective EoLC to patients and their families.

Theme 2: Student Perception Toward EoLC

The Presence During the Approaching Death Becomes a Factor in Accepting Loss

The findings of this qualitative study highlight on the experience and perception of nursing students toward EoLC, particularly when they have witnessed dying people in their families. One prominent theme that emerged was that the presence during the approaching of death becomes a factor in accepting loss (Quotes 13–15). Participants shared their emotions and thoughts about losing their loved ones and how being present during their final moments affected their grief process (Quotes 14, 15). Some participants described feeling empty, guilty, and unable to do anything, akin to losing something (Quote 13). However, others expressed gratitude for the opportunity to hold their loved one’s hand, even with a blank stare, before passing away (Quote 14). The absence of being present during their loved one’s final moments also caused sadness and regret, as expressed by one participant who regretted not being able to meet their grandmother in her last moments (Quote 15). These findings underscore the importance of family members during the EoLC process and the need for healthcare professionals to support and facilitate family presence.

The Need for Family Presence

The findings of this qualitative study highlight the importance of family presence in EoLC, as perceived by nursing students who have witnessed dying people in their own families. Participants emphasized the need for family presence stems from the desire for emotional support during this difficult time (Quotes 16–18). One participant explained, “during the approach of death, we may need the people we love to be close to us.” Additionally, participants recognized the benefits of preparing oneself before the end comes, spending more time with family, and shifting suffering into recovery (Quotes 16, 17). As one participant reflected, these actions can serve as a source of motivation and improve the quality of life for the person and their family (Quote 17). Another participant shared a personal experience, stating that her grandfather wanted to be accompanied by all family members in the last moments, highlighting the importance of fulfilling this wish for the dying person’s comfort and peace (Quote 18). These findings suggest that family presence should be prioritized and integrated into EoLC practices to provide emotional and physical support for the patient and their loved ones.

The Need for Religious Guidance During the Approaching of Death

The theme of religious guidance during the approaching death emerged as a significant finding in this qualitative study (Quotes 19–21). Nursing students who have witnessed dying people in their own families emphasized the importance of religious guidance for the critically ill, particularly in the ICU setting (Quotes 19, 20). One of the main themes that emerged from the data was the importance of providing religious guidance to patients, particularly in the ICU setting. Participants emphasized the need for patients to hear Islamic phrases before passing away, even if they are unconscious (Quote 19).

One participant stated that providing such guidance is crucial because it helps the dying person be ready to meet Allah (God), an important aspect of Islamic belief (Quotes 20). Another participant expressed that the level of unpreparedness of the family to accompany the dying person according to religious guidance is still insufficient (Quote 21).

Overall, the findings of this study highlight the importance of addressing the spiritual and religious needs of patients and their families during EoLC. Experiences of nursing students who have witnessed dying or end-of-life processes shape their attitudes and inform their practice when dealing with patients who are dying or critically ill. Nursing students who have experienced or witnessed the dying process can provide valuable guidance and support to patients and their families, and their experiences may inform their approach to end-of-life care. Additionally, these experiences may prepare nursing students to deal the challenges of caring for dying patients with confidence and composure.

Discussion

In this qualitative study, nursing students in Indonesia were asked to reflect on their experiences and perceptions towards EoLC when they have witnessed dying of people in their families. The findings reveal several important themes, including the emotional impact of death on the participants, the importance of family presence and religious guidance during the approaching death, and the need for healthcare professionals to provide adequate support and preparation to manage emotions and provide effective EoLC. The study emphasizes the importance of prioritizing family presence and integrating religious guidance into EoLC practices to provide emotional and physical support for the patient and their loved ones.

This study found that students who had experienced witnessed the dying people of their family felt sadness, disbelief, and loss even until the present time. The student experience outcome of this present study aligns with study by Liu et al and Ferguson et al revealed that nursing students feel sad, lost, and unsure about the next steps when caring for dying people, and they need experience in this area.^13,15 Similar to the study conducted by Garrino et al, our participants reported feelings of sadness, disbelief, and loss following the death of their loved ones. Furthermore, our study aligns with Garrino et al findings that reported nursing students may experience fear and anxiety when confronted with death and dying patients.¹⁶ Individual who had experienced witnessing the dying process of their family members or loved ones may have experienced a range of intense emotions and feelings. The act of being present during such a significant and emotionally charged event can evoke emotionally devastating responses.^21,22 The feeling of sadness may stem from the realization of the impending loss and the emotional impact of seeing a loved one in their final moments.²¹ Witnessing the dying process can also evoke feelings of disbelief, as it may be difficult for the students to fully comprehend or accept the reality of death. This disbelief may arise from the emotional struggle to come to terms with the finality of the situation and the profound impact it can have on their lives. Moreover, the experience of witnessing a loved one’s death may also lead to a sense of loss.²¹ This loss may not only be about losing the person physically but also the loss of their presence, companionship, and the relationship shared with them.²³ The students may grapple with feelings of grief and sorrow as they navigate through the complex emotions associated with loss.

Although having experienced the emotions and challenges associated with the dying process, nursing students may develop a deeper sense of empathy and compassion towards patients and their families. Nevertheless, dealing with the emotions of loss and grief while caring for terminally ill patients can lead to burnout and emotional exhaustion. Nursing students may feel overwhelmed by the emotional demands of palliative care and may struggle to cope with the constant exposure to end-of-life related situations. However, our study also contributes to the literature by highlighting the need for adequate support and preparation for nursing students to manage their emotions and provide effective EoLC. Systematic review by Shorey & Chua (2022) highlighted another of the recurrent emotions felt by participants, including sadness, helplessness, anger, shock, and denial.¹¹ Additionally, the review distinguishes between two types of guilt experienced by participants when patients pass away during their care or when they wish for patients’ death.¹¹ Overall, all studies indicate that nursing students require adequate preparation and support in caring for dying patients.

This study found that, from the student experiences of witnessing the dying process of their family members, they perceive the need for family presence as stemming from the desire for emotional support during difficult times. Being present during the approach of death becomes a factor in accepting the loss. The participants shared their emotions and thoughts about losing their loved ones and how being present during their final moments affected their grief process. This present study also consistent with the study conducted by Cheon & You (2022) as both use qualitative approaches with in-depth interviews as the data collection method.¹² The themes from both studies highlight the importance of emotional support and the presence of family during EoLC. However, our study explores the experiences of nursing students when witnessing the death of their own family members, while the previous study discussed nursing students’ experiences when observing patient deaths during clinical practice. Another theme of our study emphasizes the importance of religious guidance during approaching death, while the previous research did not address this topic. The previous study identified the theme of “living without thinking about death”, while we did not specifically address this topic. Another finding highlighted the need for religious guidance during EoLC, particularly in the ICU setting, as nursing students emphasized the importance of patients hearing Islamic phrases before passing away. This is in line with current systematic review that also emphasized the importance of spirituality for nurses’ strength and supporting parents’ spiritual needs when caring for children.¹¹

The fear of death and emotional responses towards terminally ill patients can be imbibed in students through self-reflection during a workshop on life-and-death issues.¹⁵ To facilitate students’ self-awareness, it is essential to provide a safe environment where they can acquire experiential knowledge of the dying process and EoLC.^24–26 Experiential education not only promotes personal growth but also motivates students to learn.¹⁵

Implication for Practice and Further Research

This finding highlights the importance of providing culturally sensitive EoLC, which is tailored to the unique needs and beliefs of patients and their families. Healthcare professionals need to prioritize family presence and integrate religious guidance into their EoLC practices to provide emotional and physical support to patients and their loved ones.^27,28

This present study suggests that healthcare professionals, including nursing educators, need to be aware of the emotional challenges that nursing students may have when dealing with death in order to provide the students with adequate support and preparation. The study also emphasizes the importance of family presence and religious guidance during EoLC. Healthcare professionals need to recognize the role of families in the dying process and integrate them into the care process. Moreover, this present study suggests that healthcare professionals need to be sensitive to the religious beliefs and practices of patients and their families and provide guidance and support accordingly. This present study highlights the importance of integrating emotional and spiritual support into EoLC practices, which may help improve the quality of care for patients and their loved ones. The study’s focus on nursing students’ experiences when witnessing the death of their family members also suggests that nursing education programs need to prepare nursing students for the emotional challenges of EoLC and provide them with the necessary training and support to provide effective EoLC.²⁹

In this study, there is a potential bias related to generalization due to the composition of the sample, which consisted solely of female participants. The use of purposive sampling to recruit participants from a nursing college, where the majority of students are female, resulted in an unintended homogeneity in the sample. Consequently, the findings of this research may be limited in their applicability to a broader population beyond female nursing students. Generalizing the study’s results to a more diverse group of nursing students or individuals from different cultural backgrounds and educational settings may not be appropriate, given the sample’s gender-specific nature. Additionally, Further research is needed to explore how nursing students in other cultural contexts experience and perceive EoLC, particularly with regard to the emotional impact of death and the importance of family presence and religious guidance. In addition, future research could investigate the effectiveness of educational interventions aimed at improving healthcare professionals’ emotional preparation and ability to provide culturally sensitive EoLC. Ultimately, this research has the potential to inform the development of more effective EoLC practices and training programs for healthcare professionals in Indonesia and beyond.

Limitations

We have some limitations to acknowledge. First, the participants in this study consisted of only 15 nursing students from one Indonesian tertiary institution. Therefore, the research findings may not represent the wider population. Second, since this qualitative study is based on the participants’ written reflection of their experience witnessing death of the family member, the analysis may not an in-depth expression compare to verbal expressions. In addition, because the research was conducted in Indonesia, the culture and social context of Indonesian society may differ from contexts elsewhere, which may affect the generalizability of the research findings. The unavailability of participant data from those who have witnessed the death process of a family member or relative may lead to a limited sample, not representing a broader range of experiences related to death and the dying process. Moreover, the time elapsed after the death event can influence an individual’s perceptions of death and the dying process. This concern indicates that the time factor after the loss should be considered as an important variable in the analysis and interpretation of the data. Finally, as the study is based on data obtained from interviews, there are potential data limitations as participants may not be able or comfortable speaking openly about this sensitive topic. In addition, due to the research focus is solely on the experience of nursing students, the perspectives of the patient’s family and more experienced caregivers may not be represented in the research findings.

Conclusion

This qualitative study focused on the experiences and perceptions of nursing students in Indonesia towards EoLC, particularly when they have witnessed dying people in their families. The findings suggest that emotional support and preparation for managing emotions are essential for nursing students to provide effective EoLC to patients and their families. The importance of family presence and religious guidance during the approaching death also emerged as crucial factors in providing emotional and physical support to patients and their loved ones. Therefore, it is imperative for healthcare professionals to prioritize family presence and integrate religious guidance into EoLC practices to ensure patients receive comprehensive care that addresses their emotional, physical, and spiritual needs. Such programs could help address the emotional and spiritual needs of patients and their families and improve the quality of EoLC in Indonesia.