Unveiling nurses’ end-of-life care experiences: Moral distress and impacts

Abstract

Background

Nurses providing care to patients with end-of-life or terminal illnesses often encounter ethically challenging situations leading to moral distress. However, existing quantitative studies have examined moral distress using instruments that address general clinical situations rather than those specific to end-of-life care. Furthermore, qualitative studies have often been limited to participants from a single unit or those experiencing moral distress-induced circumstances. A comprehensive and integrated understanding of the overarching process of moral distress is vital to discern the unique circumstances surrounding end-of-life care and its consequential impacts.

Research objectives

To explore the moral distress experiences of nurses who are frequently involved in caring for patients with end-of-life or terminal illnesses and apply it to two existing theories: the model of moral distress and the ecological model.

Research design

A qualitative descriptive approach was employed.

Participants and research context

Seven focus group interviews involving 30 nurses were performed. The subsequent transcriptions underwent rigorous content analysis.

Ethical considerations

We obtained Institutional Review Board approval from a university. Focus group interviews were conducted with nurses who agreed to participate and signed the consent form.

Findings

The moral distress-inducing factors and nurses’ perceived impact of moral distress were identified and categorized based on moral distress theories and ecological models. A total of 15 categories and 30 subcategories across the following 4 domains were derived: (1) intrapersonal, (2) interpersonal, (3) organizational, and (4) structural factors.

Conclusions

End-of-life-specific circumstances induced moral distress among nurses, with both negative and positive impacts identified. Effective organizational and policy support is essential to manage conflicts, form a healthy organizational culture, provide training, and prevent unnecessary expenses due to the negative consequences of moral distress.

Keywords

End-of-life care moral distress nurses terminal care qualitative research

Introduction

Nurses who often care for patients with end-of-life or terminal illnesses are vulnerable to moral distress.¹ They are frequently situated in difficult decision-making circumstances that can profoundly impact the patient’s quality of life until their death.² In addition, they witness first-hand the consequences of their decisions. A comprehensive understanding of end-of-life care-related moral distress and its impacts is crucial for preventing nurses from experiencing its negative consequences. In this article, we used the ecological model as a theoretical basis to identify the characteristics of moral distress in nurses who frequently provide end-of-life care.³ In-depth focus group interviews were conducted in line with the moral distress theory to hear the vivid stories of the nurses.⁴

Background

As life expectancy has increased, exploring end-of-life stages and death has become increasingly pivotal. Understanding how to die well is now considered inseparable from knowledge of living well.⁵ Despite the strides in modern medical technology enhancing disease treatment and extending human life, profound ethical dilemmas persist in end-of-life care. These encompass considerations such as death with dignity, euthanasia, well-dying, and the continuation of life-sustaining treatment in cases showing no signs of improvement.

Moral distress, defined by Campbell et al. as “one or more negative self-directed emotions or attitudes that arise in response to one’s perceived involvement in a situation that one perceives to be morally undesirable” (p. 6),⁶ is particularly reported among nurses caring for patients at the end-of-life.^1,2,7–10 This moral distress is linked to significant negative impacts on (1) psychological aspects such as burnout, job satisfaction, and quality of life,^11,12 (2) organizational aspects such as individuals’ intention to leave and staff shortages,^4,13–16 and (3) nurses’ care practices.^2,10,17,18 While numerous studies have quantitatively examined nurses’ moral distress using moral distress scale (MDS-R)¹⁹ or measures of moral distress for healthcare providers (MMD-HP),²⁰ these instruments lack specificity to the unique challenges arising from end-of-life care.

These instruments are widely used to measure (1) overall moral distress circumstances encountered by healthcare providers during daily clinical practice and (2) intention to leave caused by moral distress. The instruments, however, fall short in addressing the distinct challenges surrounding end-of-life care, including internal conflicts related to life-sustaining treatment decisions, family involvement, and patient’s end-of-life process.²¹ Although Hamric and Blackhall have developed an instrument for end-of-life care settings, it was applicable only to intensive care unit (ICU) and geriatric patients.²²

For studies specifically examining nurses’ moral distress surrounding end-of-life care, they usually involved reflections from only one particular unit, such as the critical care unit or pediatric ICU.^7,23 Furthermore, previous studies have primarily focused on the impact of moral distress on nursing management issues such as job satisfaction or turnover intention.⁸ There remains a scarcity of understanding regarding the moral distress encountered by nurses in the realm of end of life care, with a comprehensive perspective that acknowledges it as a multifaceted interconnected system influenced by various levels of the surrounding environment, encompassing cultural values, customs, and relationships.

Therefore, this study aimed to explore the perceptions of nurses who often encounter patients at the end-of-life or with terminal illnesses from the perspective of the ecological system. The focus is on understanding the moral distress experiences of nurses in end-of-life care, investigating both the situations triggering moral distress and their subsequent impacts comprehensively. This exploration will provide contextual understanding and interpretive insight regarding moral distress, serving as a foundation for improved nursing care for patients at the end-of-life or with terminal illnesses.

Methods

Research design

This qualitative descriptive study utilized focus group interviews. A convenient sampling was performed on the nurses who often care for patients with end-of-life or terminal illnesses. A maximum variation based on the nurses’ units, hospitals, and ages was performed to reflect their perspectives from diverse settings and experiences. The recruitment, therefore, was conducted from adult/pediatric wards, ICUs, and hospice units.

Participants and research context

A total of 30 nurses participated in the study, comprising 7 focus group interviews conducted from August 2, 2022, to November 15. Each focus group consisted of three to five nurses from the same unit or a similar setting to facilitate the participants’ recalling of their experiences and interactions within the group. The average interview duration was approximately 2 h.

Data was collected from 18 units of 12 hospitals where patient death frequently occurs: 1 primary hospice hospital, 3 general hospitals, and 8 tertiary general hospitals in South Korea. Recruitment involved reaching out to eligible nurses through the hospital nursing department, where the study was introduced. The researchers explained the study’s purpose and the focus group interview method to inform potential privacy concerns. Then, nurses who volunteered to participate were screened using the inclusion and exclusion criteria. Nurses with less than 6 months of experience, lacking moral distress experience, or declined to report their moral distress were excluded.

After setting up the interview date and time, the interviews were conducted in a conference room, and all interviews were audio-recorded. The interviewers explained the study purpose and procedure to the participants before the focus group interview and created a natural atmosphere for the interviewee. During the interviews, the interviewers tried to ensure all voices were heard by asking questions to quiet participants and paying attention to their nonverbal communication. The participants received a coffee coupon as a token of appreciation. Before the study, all interviewers underwent qualitative research-related educational training and had previous experience conducting qualitative research studies.

Interview questions

The interview script for this study was developed based on Campbell’s definition of moral distress.⁶ Four key questions were as follows: “While caring for patients with end-of-life or terminal illnesses, have you ever had to do something that you thought was morally not right?”; “Have you ever felt morally distressed because your voice or opinion was not addressed?”; “Have you ever had to do work that goes against your values or professional practice as a nursing professional?”; and “Have you ever had to make a choice without knowing which was the better choice?”. To ensure that the nurses’ experience was a moral distress issue and to understand the experience in-depth, probing questions were employed to delve into the circumstances of these experiences and their subsequent impact, aligning with the model for a moral distress theory.⁴

Analysis

Deductive content analysis using two theoretical models was performed in this study.²⁴ All recorded data were transcribed into verbatim, and three researchers (ML, SHK, and SK) individually read the data repeatedly to understand the participants’ statements. Significant statements related to the experience of moral distress were extracted from the data, and these sentences and phrases were coded. The developed codes were organized into themes, theme clusters, and categories through multiple discussions among the three researchers.

Corley’s model of moral distress provided the structural foundation for organizing the codes into two main components: (1) factors related to moral concepts inducing distress and (2) impacts that nurses perceived.⁴ Additionally, using an ecological theory, various moral distress factors and their impacts were categorized into intrapersonal, interpersonal, organizational, and structural domains.³ Specifically, nurses’ moral distress experiences involving their perceptions, including knowledge, philosophy, beliefs, and capability, were included in the “Intrapersonal factor domain.” Nurses’ experiences that involve relationships with other individuals were categorized as the “Interpersonal factor domain.” Their moral distress experiences related to organizational or team culture were placed in the “Organizational factor domain.” Lastly, experiences beyond the team level, such as policy and resources issue, were categorized as the “Structural factor domain” (Figure 1).

Figure 1.

Conceptual framework of nurse’s moral distress experience of patients with end-of-life or terminal illness.

This study’s rigor was maintained by observing its credibility, transferability, dependability, and confirmability.²⁵ Credibility was achieved through peer debriefing, wherein two academic experts in hospice and palliative nursing care reviewed the analyzed results and coding schemes, through analyst triangulation by multiple discussions among three analyzers, and by incorporating the results obtained through a deviant case analysis. To increase its transferability, the maximum variation was performed during sampling by recruiting 30 nurses from various units, hospitals, and ages. The study’s dependability and confirmability were maintained by keeping the audit trail of all data collection and analysis processes, including field notes, coding schemes, and categorizing descriptions and triangulations during the data analysis.

Ethical considerations

The study was approved by the Institutional Review Board of a university (No. 2202-07-003-002). Prior to data collection, the research purpose, confidentiality, anonymity, voluntary participation and discontinuation, and prohibition of use of data other than study purposes were explained to the participants. According to the Declaration of Helsinki, the researchers fully explained in advance that decision making is respected and that no disadvantages are incurred as a result of decisions. Data were collected only from those who provided written consent. Moreover, data confidentiality of and anonymity of the participants throughout the research process were strictly guaranteed.

Results

Among the 30 nurses, 29 were women aged 26–47 years. Among the participants, 26 (86.7%) were employed by a tertiary general hospital, whereas 1 worked at a primary hospital, specifically an independent hospice facility. The nurses were distributed across different working units, with eight in the hospice setting, nine in adult and pediatric ICUs, twelve in adult and pediatric wards, and one nurse in an emergency ward. On average, the nurses have 8.3 years of nursing experience, and their working experience in the current unit varied from 12 to 116 months (Table 1).

Table 1.

Sociodemographic characteristics of the study participants.

	n (%)
Gender
Female	29 (96.7)
Male	1 (3.3)
Age (year)
20s	10 (33.3)
30s	16 (53.3)
40s	4 (13.3)
Type of hospital
Tertiary general hospital	26 (86.7)
General hospital	3 (10.0)
Primary hospital	1 (3.3)
Working unit
Hospice (in-patient or home)	8 (26.7)
Intensive care unit (adult)	5 (16.7)
Intensive care unit (neonate or pediatric)	4 (13.3)
Oncology ward (adult)	7 (23.4)
Oncology ward (pediatric)	4 (13.3)
Internal medicine ward	1 (3.3)
Emergency ward	1 (3.3)
Working experience, mean (range)	8.3 years (25 months to 241 months)
Working experience in current unit, mean (range)	4.8 years (12 months to 116 months)

We identified 15 categories and 30 subcategories across the following four domains, according to the ecological model: (1) intrapersonal, (2) interpersonal, (3) organizational, and (4) structural factors (Table 2).

Table 2.

Moral distress factors and its impacts in subcategories, categories, and domains.

Domain (4)	Categories (15)	Subcategories (30)
Intrapersonal factors (micro-level)	1. Practices contradicting own beliefs	1.1. Merely watching decisions being made that diverge from the patient’s values and wishes, and complying with them
	1. Practices contradicting own beliefs	1.2. Executing the physician’s instruction without conviction
	2. Witnessing patient’s suffering	2.1. The anguish of watching a suffering patient
	2. Witnessing patient’s suffering	2.2. Compassion for patients suffering from futile life-sustaining treatments
	3. Ethical dilemma	3.1. Harming the patient unintentionally
	3. Ethical dilemma	3.2. Conflicting principles between respect for autonomy and the beneficence
	4. Personal limitations	4.1. Lack of competency in providing end-of-life care
	4. Personal limitations	4.2. Challenges in making end-of-life care decisions due to uncertainty
	5. Impact from intrapersonal factors	5.1. Doubt or skepticism about one’s own practices
	5. Impact from intrapersonal factors	5.2. Gratifying sense of genuinely helping a patient ^*
Interpersonal factors (micro-level)	6. Nurse–physician relationship	6.1. Heteronomous nursing work
	6. Nurse–physician relationship	6.2. Challenging collaboration due to one-sided communication
	7. Nurse–nurse relationship	7.1. Rigid hierarchy that prohibits dissent and free discussion
	8. Nurse–client relationship	8.1. Relatives who impose unreasonable demands
	8. Nurse–client relationship	8.2. Indifferent families that disregard the patients’ suffering
	9. Impact from interpersonal factors	9.1. Setting limits on the role of nurses
		9.2. Sense of helplessness
		9.3. Providing comfort and support to one another within relationships ^*
Organizational factors (meso-level)	10. Inadequate team competence in delivering end-of-life care	10.1. Limited knowledge and experience of physicians and nurses in end-of-life care
	11. Organizational culture	11.1. A culture that refrains from expressing emotions toward death and dying
		11.2. Healthcare provider-centered care
		11.3. A climate of blaming the individuals who raise issues
	12. Impact from organizational factors	12.1. Avoiding conversations on end-of-life care issues
	12. Impact from organizational factors	12.2. Silently standing by despite witnessing inappropriate practices
Structural factors (macro-level)	13. Rules and policies	13.1. Regulations that hinder personalized care
	14. Lack of resources	14.1. Pressuring for early discharge of terminally ill patients
		14.2. Lack of room for dying patients and their families
		14.3. Absence of access to palliative care services
	15. Lack of human resources	15.1. Excessive nursing workload
	15. Lack of human resources	15.2. Inadequate education in end-of-life care

Note. Bold = impacts of moral distress. * = positive impacts.

Intrapersonal factors

Nurses experienced moral distress when they were compelled to provide care that directly contradicted their belief. Additionally, they experienced moral distress when they feel compassion for patients, encounter ethical dilemmas, and acknowledge their own inadequacies. While the experience of moral distress led to doubts whether their action is appropriate for the patient, such experiences also derived a sense of fulfillment from knowing that they were genuinely making a difference in their patients’ lives.

Practices contradicting own beliefs

Participants agreed on the importance of incorporating the patient’s wishes and intentions into end-of-life decision making. However, in cases wherein life-sustaining treatment is continued only at the family’s request without discussing the terminal condition and end-of-life care options with the patients, the nurses experienced moral distress. Furthermore, participants faced ethical conflicts when they were uncertain about the potential benefits of certain treatments for their patients. In situations where they had no choice but to carry out a physicians’ instruction, despite their own disagreement, they struggled with the question of whether their actions were the ethically right thing to do.

“From the first meeting, he wanted to die quickly. He clearly stated, ‘please let me die without further treatment’. However, his older sister could not let him go and insisted to have him treated unconditionally. I know that the patient’s wishes come first, but the life-sustaining treatment was carried out according to the family’s request” (Participant 26).

Witnessing patient’s suffering

Participants experienced moral distress when confronted with the agonizing sight of a patient suffering. As dedicated nurses, they felt a deep sense of compassion for their patients, and it is particularly challenging for them to witness patients in severe pain due to inadequate symptom management or futile life-sustaining treatments. In such situations, they often felt angry and helpless, as they longed to alleviate the patient’s suffering but felt constrained by the circumstances. These emotional conflicts added to their moral distress, further highlighting the complex ethical challenges faced by these nurses in providing optimal care to their patients.

“Later on, it got really worse, and the skin on his back was peeling off and tearing up... but the attending doctor was not very caring... and the child was in a lot of pain. It was so hard to see a child suffering as a nurse” (Participant 25).

“In the ICU, due to the presence of multiple tubes and hoses attached to the patients, family members are unable to hold or touch them while they are still alive” (Participant 24).

Ethical dilemma

Situations of choices often tormented participants. Although there was no one morally right thing to do, they needed to choose one with good intentions, and they may have inadvertently caused harm to their patients. They grappled with ethical dilemmas, such as whether it was ethical to insert a nasogastric tube into a dying patient with a bowel obstruction, or whether it was appropriate to change the patient’s position every 2 h, even if it caused tremendous discomfort. Furthermore, they agonized over decisions related to withholding airway suction or administering painkillers aggressively. These dilemmas weighed heavily on their conscience as they constantly questioned the ethical correctness of their actions, demonstrating their deep commitment to providing the best possible care to their patients.

Participants faced a significant internal struggle as they faced the dilemma between honoring the patient’s wishes and their own professional judgment on what is beneficial for the patient. This conflict arose from the clash between respecting the patient’s autonomy and the desire to provide what they believed to be the best course of action. In patients expressing a desire to discontinue treatment or care, participants had to weigh the patient’s autonomy against their own belief according to the potential benefits of continuing treatment. Similarly, when caring for patients with depression, participants found themselves questioning whether their nursing care truly addressed the patient’s needs or if alternative approaches were necessary.

“When a patient has delirium and is weakening, there is a dilemma whether administering sedatives would be helpful for the restless patient or it could accelerate the patient’s death” (Participant 20).

“When a patient expresses a desire for comfort and wishes to let go, I tend to administer pain medication more aggressively (despite questioning what would be a better choice between respecting the patient’s wish and continuing treatments). However, after the patient passes away, I experience a sense of guilt, as felt that their death might be my fault” (Participant 21).

Personal limitations

Participants encountered challenges stemming from their limited experience in end-of-life care. When caring for terminally ill patients, the participants struggled to determine whether the patient had reached the dying stage and what specific care was crucial for both the patients and their family in that moment. At times, the judgment on end-of-life care was made too hastily, potentially overlooking important interventions, whereas in other instances, it was delayed, resulting in missed opportunities for providing optimal care.

“In retrospect, I realize that the difficulty I experienced in prioritizing the most crucial aspects of end-of-life situation stemmed from my limited knowledge” (Participant 6).

Impact from intrapersonal factors

Participants became skeptical when performing nursing duties that contradicted their personal beliefs. This dissonance led them to question their actions’ validity and effectiveness, ultimately causing them to feel a sense of detachment and inhumanity when witnessing suffering endured by patients and their families. Despite these challenges, participants also had positive experiences as a result of their moral distress. Their internal struggles allowed them provide genuine help and support to the patients and their families. This positive aspect served as a reminder of the significance and impact of their work, reinforcing their dedication to compassionate care and their commitment to making a difference in the lives of those they served.

“The death of one person is undoubtedly a sorrowful event. However, as a healthcare worker, we are required to handle the situation in a more detached manner… It became not easy to sincerely empathize with those who are mourning, which makes me question my own humanity” (Participant 11).

“It remains a good memory that I helped the child leave quietly and comfortably by turning off the machine alarm and allowing the mom and dad clean the child together one last time” (Participant 25).

Interpersonal factors

The moral distress experienced by the participants was influenced by the dynamics and interactions among physicians, nurses, and clients, which either exacerbated or alleviated the situation.

Nurse–physician relationship

Participants experienced a sense of violation of their professional autonomy and frustration in their role as patient advocates, when their suggestions or opinions were disregarded and they were instructed to unquestioningly follow the physician’s orders, which was especially evident when they were excluded from end-of-life decision-making discussions. These experiences highlighted the constraints within the nursing profession and contributed to their moral distress.

“When I communicate my concerns or questions to a physician and receive the response ‘follow the order,’ I feel somewhat restricted in my role as a nurse” (Participant 12).

Nurse–nurse relationship

Participants highlighted that the rigid hierarchical nature of the nurse–nurse relationship suppressed dissent and open discussion, consequently impeding the practice of active patient-centered nursing. These nurse–nurse experiences made the participants to adhere to a “routine care as usual” approach, which differed from their belief for person-centered care.

“When a new nurse raises questions or suggestions, I sense a slight atmosphere of animosity at first. It is like this. We have not had any problems doing this until now, but how come you caused trouble...” (Participant 15).

Nurse–client relationship

Participants encountered moral anguish when faced with family members who made unreasonable demands that infringed upon the authorities and responsibilities of the medical professions, as well as families who displayed indifference and turned away from the patients’ suffering. Participants experienced conflict when the nurse’s approach to delivering optimal patient care conflicted with the family’s expectations and requests.

“The child’s father was extremely assertive, came to the station frequently, and requested specific adjustments to the dosage of naloxone and fentanyl. While the decision rests with the medical team, his level of insistence feels overpowering and challenging to manage” (Participant 22).

“When the relatives refused to suction the patient due to the patient’s DNR status, then I wondered if this is the right thing to do and felt a range of emotions” (Participant 29).

Impact from interpersonal factors

Participants felt helpless in their interactions with physicians, fellow nurses, and clients, leading them to establish boundaries in their nursing role. They adopted a bystander mindset, deciding to refrain from further involvement. However, they also found solace and motivation in fostering a supportive environment where they could provide comfort to the patients and their families and encouragement to one another within the nursing team.

“Once I notified the attending physician, I tried to think that I fulfilled my responsibilities as a nurse for the patient. Subsequently, it is up to the physician, and any negative events are not my fault. I draw the lines that they are not my fault...” (Participant 11).

“Before the mother of the deceased left, she expressed gratitude because I shared tears with her. Upon hearing those words, I realized that being able to share emotions in such final moments is something I can offer as a nurse” (Participant 16).

Organizational factors

Participants identified several organizational factors that contributed to their moral distress in providing end-of-life care. They highlighted the team members’ insufficient competencies to effectively care for dying patients. Additionally, they pointed out that the organizational culture is an obstacle to delivering high-quality end-of-life care. As a result of these challenges, participants expressed that they are compelled to remain silent even when witnessing end-of-life issues or inappropriate practices, further exacerbating their moral distress.

Inadequate team competence in delivering end-of-life care

Participants expressed that the limited knowledge and experience of doctors and nurses led them to feel moral distress. In particular, a lack of end-of-life care-trained clinicians intensified the nurses’ moral distress.

“Although I witnessed a medical intern continuously fail to insert an L-tube and the patient express the pain, there was no other option” (Participant 20).

Organizational culture

Participants expressed that the prevailing organizational culture, which discouraged the open expression of emotions surrounding death and dying, exerted pressure on them to adopt a work-centered and medically convenient approach rather than a person-centered approach when caring for dying patients. This culture created an environment where the emotional and psychological aspects of end-of-life care were overshadowed by the need for efficiency and convenience. Additionally, participants faced challenges when reporting errors due to a climate that fostered blame and criticism toward individuals who raised concerns. Owing to this climate, they were compelled to conceal errors, leading to a deep sense of moral distress.

“I felt conflicted in a situation where multiple nurses had to restrain a delirious patient and administer an intramuscular sedative. Despite the patient’s protests and resistance, the injection was given forcefully. It seemed to be the quickest and easiest solution for everyone involved, except for the patient” (Participant 20). (In case of a medication error) “The patient passed away 2 weeks later, with the cause of death irrelevant to that error... I could not possibly disclose this error to the patient’s family and physician, considering the ramifications of reporting this” (Participant 16).

Impact from organizational factors

Participants refrained from engaging in conversations about end-of-life care issues and chose to remain silent, primarily due to the lack of capabilities in providing comprehensive end-of-life care and the presence of an organizational culture that inhibited such type of care. They found it challenging to address these sensitive topics or voice concerns about the inappropriate practices that they have witnessed. This silence was a response to the prevailing barriers and limitations they faced, further contributing to their moral distress and the perpetuation of suboptimal end-of-life care practices within the organization.

“When the relatives asked me questions regarding end-of-life issues, I took a step back and respond in a detached manner, evading their inquiries as if I do not care… I have never been properly educated on how to discuss end-of-life matters” (Participant 26).

“Everyone is unwilling to acknowledge the patient's impending death, and it remains an unspoken truth hanging in the air (end-of-life matters). I believe this is not the right approach, but whenever I try to initiate a change, it only results in more work for me. So, I keep these thoughts to myself and do not express them” (Participant 14).

Structural factors

Structural factors contribute to the exacerbation of moral distress among participants. The regulations that impede the provision of individualized care and the lack of sufficient human and environmental resources to support high-quality end-of-life care were particularly highlighted.

Rules and policies

Participants grappled with moral distress arising from situations where the individual circumstances of the dying patients were disregarded due to the strict institutional regulations and guidelines. This was particularly evident during the coronavirus disease 2019 (COVID-19) pandemic, where participants witnessed patients dying while being isolated from their families and loved ones. They faced an ethical dilemma, questioning the ethicality of sacrificing individual needs for the public good. The anguish stemmed from the internal conflict between adhering to public health measures and upholding the values of compassion, empathy, and person-centered care.

“During the COVID-19 pandemic, visitor restriction was implemented strictly with no exception, and entry was permitted only for those individuals with negative test results. The father who had been caring for the child at home had repeated false positive results. So, he was allowed to walk around the street but not able to witness his son’s passing. I could not agree with this policy” (Participant 25).

Limited resources

Participants experienced profound remorse when they were compelled to discharge terminally ill patients prematurely in order to free up the limited beds for those with a higher chance of recovery. The difficult decision to prioritize resource allocation and ensuing consequences weighed heavily on them emotionally. Furthermore, participants expressed deep concerns for patients and their families who had to endure end-of-life experiences in shared rooms or treatment preparation areas located near nurse stations, compromising their privacy and dignity. The participants recognized the potential value of hospice palliative care services in improving the situation, but their moral distress was further intensified due to the unavailability of a hospice palliative care team.

“We do not have access to a hospice service at all, so we cannot even recommend hospice to the patients and their families… and while performing CPR, the dying patient has to stay behind a drawn curtain in a multi bed room. It is hard to provide optimal care for the dying patient in this situation” (Participant 15).

Lack of human resources

Participants highlighted the unfortunate reality that end-of-life care often takes a backseat due to the overwhelming workloads and competing priorities. This situation led nurses to experience moral distress as they struggled to find adequate time and emotional capacity to be present with the dying patients and their families. The pressures of their workload left them with limited opportunities to offer genuine empathy and support, resulting in feelings of guilt and emotional depletion due to job burnout. Furthermore, the participants recognized the lack of educational opportunities for end-of-life care, which limited their ability to provide optimal care to patients nearing the end-of-life.

“Especially when the intensive treatment is scaled back as the patient reaches the end-of-life, there are moments when I feel a sense of relief, thinking, ‘Ah, the burden is finally lifted’. To be honest, I sometimes perceive myself as a flawed individual, but as healthcare professionals, we also have limitations as human beings” (Participant 26).

Discussions

This study provided an in-depth exploration of moral distress factors among nurses specializing in end-of-life care and delved into the subsequent impacts on their experiences. The study results revealed the distinctiveness of moral distress surrounding end-of-life care settings. Among the 30 subcategories explored, 23 were moral distress circumstances and 7 were the impacts experienced by nurses. These subcategories were organized into 15 categories, and the categories were classified into intrapersonal, interpersonal, organizational, and structural domains.

Compared to the MMD-HP, which categorizes factors at system, patient, team integrity compromise, and team interaction breakdown levels,^19,20 the system-level factors align with our structural factor, while compromise of team integrity corresponds to the organizational factor. Items of patient level and team interaction breakdown level align with our interpersonal factors. However, our study disclosed that additional intrapersonal circumstances inducing moral distress such as internal conflicts, constraints, and ethical dilemmas surrounding end-of-life care were evident, as a previous study reported.²¹ This finding could be because we utilized Campbell’s broader definition of moral distress to develop interview questions.⁶ However, by utilizing it, we could obtain comprehensive information on distinctive intrapersonal factors. Because people do not always know what is morally right in situations involving one’s belief system and ethical values, such as dying and death, we recommend that future studies consider the broader definition of moral distress to address the moral agent’s experience inclusively.

Unique circumstances specific to end-of-life care were revealed from this study. While other circumstances of intrapersonal factors were similar to those reported in previous studies, “witnessing patient’s suffering” was a distinctive situation for this study. Although this result is similar to the findings of two previous studies that revealed nurses’ high moral distress when they care for dying patients who have no families around them because of COVID-19 restriction²⁶ and for patients with a low quality of life admitted in oncology units,² it is uncommon in other moral distress situations.

Although interpersonal factors were the common reasons of healthcare providers’ moral distress, the detailed circumstances of the most common interpersonal factors revealed in this study were distinctive. Limited nurses’ autonomy in decision making about end-of-life care was an explicit circumstance to end-of-life care setting. Decisions of life-sustaining treatments and end-of-life care planning are directly connected to patients’ quality of life and life expectancy. Because nurses’ consequent practices considerably impact these patients’ lives and deaths, nurses’ autonomy and involvement in decision-making are crucial to preventing their moral distress.

Additionally, while patriarchal relationships between physicians and nurses have been reported from previous studies,^23,27 hierarchical relationships among nurses were unique results as well in this study. Additionally, nurses experienced moral distress when they witnessed that their family members are indifferent to the patient. Although two previous Korean studies conducted from ICU nurses obtained the same finding,^28,29 this result was uncommon in other previous studies. Whereas the hierarchical nurse relationships and family’s indifference require further investigations in future research studies, these results show the need for fostering a positive culture in organizations and for social support among family caregivers.

Organizational factors largely aligned with the MMD-HP, except for one distinctive circumstance: a culture that refrains from expressing emotions toward death and dying. This can be a set of consequences or personal coping mechanism of nurses who often experienced end-of-life patients while there is a lack of support for them. Structural factors were mostly consistent with previous studies, including resources,¹⁷ heavy workload,⁷ and strict visiting policy for family,³⁰ but were more specific to end-of-life care-related policies and resources in our study.

Contrary to the most previous studies that moral distress leads to solely negative outcomes, we found that experiencing moral distress can also bring positive consequences. Although the nurses’ moral distress produced negative emotions toward themselves, it also provided them an opportunity to try to overcome such emotions in this study. This was similar to the finding of a previous study that reported the impact of the nurses’ moral distress on their resilience²⁸ and that of a study discussing the considerations of positive gaining after experiencing moral distress.³¹ However, the positive impacts were limited only to intra- and interpersonal factors but not for organizational and structural factors. Based on this result, we assume that the nurses’ experience of moral distress at an individual level could make them and their team improve and prepare their self-rescue plans. However, organizational- and structural-level factors should be effectively managed to prevent nurses from experiencing the negative impacts of the moral distress.

Identifying and distinguishing these factors when moral distress occurs would allow us to determine whether they are modifiable and whether changing practices and policies can accomplish the necessary reforms. It would also provide relevant evidence to establish strategies aimed at transforming problematic factors and identifying areas for system modification.

The interesting findings from this study reveal that the moral distress experienced by nurses caring for terminally ill patients is influenced by intrapersonal, interpersonal, organizational, and structural factors. Simultaneously, recurrent experiences of moral distress shape nurses’ attitudes and practices regarding end-of-life care. In efforts to evade moral anguish, nurses often become psychologically and ethically desensitized, turning away from morally challenging situations or establishing emotional distance within their scope of roles. Eventually, these adaptations become embedded within the organizational culture, perpetuating a cycle of moral distress affecting both oneself and other nurses.

Despite its contributions, this study has limitations. Generalizability may be restricted to nurses specializing in end-of-life care, and the contextual influence of the South Korean healthcare system raises considerations about the applicability of results to other settings. In addition, the result may not reflect a full spectrum of nurses who experience patients’ deaths frequently because only nurses who tend to have positive points of view may have volunteered to participate in this study. Moreover, despite employing focus group interviews to facilitate participant recall and interaction, preserving their private experiences from disclosing them to others is possible from the chosen data collection method. Lastly, the impacts of moral distress were analyzed based on its relationship with each ecological level in this study. Further investigation of its precedent and discerning the impacts of moral distress from the impacts of end-of-life experiences would be beneficial. Future research should further investigate these factors to inform targeted interventions and promote comprehensive reforms in nursing practices and healthcare policies.

Conclusion

This study provided in-depth insights into nurses’ moral distress experiences in end-of-life care, identifying specific factors. Although moral distress related to personal-level factors not only caused negative emotions among nurses but also had positive impacts on their resilience and personal growth, moral distress related to organizational and structural factors affected them in such a way that they tended to avoid doing their roles. Therefore, it is crucial to discern the nature of moral distress experienced by nurses, distinguishing whether it originates at an individual level or higher level, to appropriately prevent its negative consequences. The outcomes of this study provide a foundational understanding of end-of-life care-specific moral distress and its impacts, serving as a basis for developing an instrument that measures end-of-life care-specific moral distress in the future.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Korean Hospice Palliative Nursing Research Network Grant.

ORCID iDs

Cho Hee Kim

Sanghee Kim

Sujeong Kim

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