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Abstract
Objective During the COVID-19 pandemic, the need for end-of-life care has increased. This type of care is different for patients with COVID-19 compared with other patients. This study aims to explain the experiences of intensive care unit (ICU) nurses in providing end-of-life care to patients with COVID-19.
Design Qualitative content analysis.
Setting The study population consisted of ICU nurses working in hospitals affiliated with the Kerman University of Medical Sciences in southeastern Iran.
Participants 14 ICU nurses, including 9 women and 5 men, participated in this study. Their mean age was 33.79±5.07 years, and their mean work experience was 8.64±3.5 years.
Primary and secondary objectives The purpose of this qualitative content analysis was to explore the experiences of Iranian intensive care nurses using purposive sampling and semistructured in-depth interviews. Sampling was based on maximum variation (age, gender, professional experience and educational level) to obtain rich information. Guba and Lincoln’s criteria were applied to increase the trustworthiness and rigour of the study, and the data were analysed using Graneheim and Lundman’s method and MAXQDA 2020.
Results ICU nurses’ experiences of caring for patients with COVID-19 at the end of life are comprehensive, and four main themes emerged from the responses: fear of death due to COVID-19 infection; physical and psychological consequences of caring for patients dying from COVID-19; confusion in caring for patients with COVID-19 at the end of life and unbelievable deaths.
Conclusion The present study looked at the experiences of Iranian nurses providing end-of-life care during the COVID-19 pandemic. The findings suggest that the nurses experienced anxiety, excessive fatigue and guilt during end-of-life care and that the high mortality and unbelievable deaths were traumatic experiences for them.
- COVID-19
- QUALITATIVE RESEARCH
- Nurses
- Nursing Care
Data availability statement
No data are available.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
Qualitative descriptive designs are a suitable method for exploring the rich experiences of participants, especially in topics that are less well known.
The main components of nurses in providing end-of-life care at the time of a newfound disease were identified.
The experiences of nursing managers were not investigated.
Introduction
COVID-19 is a highly contagious disease and one of the largest global pandemics affecting humans.1 From a developmental perspective, the COVID-19 pandemic can be defined as an atypical life event that is unpredictable and unexpected. In addition, it does not follow a predetermined growth pattern in the life cycle.1 This pandemic was a shock that affected different contexts. Among adolescents, the risk of contracting COVID-19 was low.2 Nevertheless, students felt fear of COVID-19 and perceived health risks.3
The rapid spread of this disease shook the health systems of many countries4 and led to a significant number of deaths within a short period.5 During the most critical phases of the COVID-19 pandemic, end-of-life management was extremely difficult, especially in emergency departments and intensive care units (ICUs). The high influx of COVID-19 patients quickly overwhelmed ICUs, and limited resources were available to manage this new emergency. Many healthcare workers were suddenly torn from their usual routine and found it difficult to cope with the high number of dying patients.6
Nurses are the largest health professionals providing direct care.7 8 ICU nurses, in particular, played a critical role in dealing with the COVID-19 crisis and have been instrumental in affected countries.9 They carry out various duties and responsibilities, such as paying constant attention to patients’ needs, making critical decisions and communicating with families. Additionally, they spend more time in direct patient care than other departments.10
With the emergence of COVID-19 and its high mortality rate, providing careful end-of-life care became more crucial in the ICU than ever before.11 However, this task was challenging to achieve due to new obstacles faced by ICU nurses during the COVID-19 epidemic, including exposure to disease, stigma, lack of ICU beds, death, multiple end-of-life decisions and inadequate personal protective equipment.10
ICU nurses faced significant challenges related to end-of-life care during the COVID-19 pandemic.12 A study examined nurses’ experiences providing care to dying patients without family presence during the pandemic. The study found that the pandemic had a profound effect on the physical, interpersonal, emotional and spiritual care provided by nurses to patients dying of COVID-19, as well as on the mental health of nurses. Although nurses employed various strategies to manage patients’ grief and help their loved ones cope with the loss, they still felt ill-equipped and isolated when it came to accompanying many patients at the time of death.13
Given the crucial role of ICU nurses in managing end-of-life care, particularly in the context of patients with COVID-19, exploring their experiences can shed light on the prevailing conditions in the nursing system and inform better care provision during future crises. Qualitative research that employs multiple methods to gather information and examine events, norms and values from the perspective of participants can facilitate a thorough investigation and comprehensive understanding of this phenomenon.14 Furthermore, since there are limited published studies on ICU nurses’ experiences with end-of-life care, and qualitative research can elucidate people’s experiences of a phenomenon across different societies, this study aimed to explain the experiences of ICU nurses regarding the end-of-life care of patients with COVID-19.
Methods
Design
The present research is a qualitative study conducted using the conventional content analysis method. This report was prepared based on the consolidated criteria for reporting qualitative research (online supplemental file 1). In this method, a phenomenon would be described by analysing written, spoken or visual messages. Summarising and categorising raw data would be performed by inference, interpretation and categories, and their names would be extracted from the context of the data using in-depth analysis.15 This study presents the COVID-19 disease end-of-life experiences of nurses in Iran.
Supplemental material
Sample and setting: In the Iranian health context here, most nurses had a bachelor’s degree and specialised training in ICU and worked in the Level 3 ICU of three governmental hospitals in Kerman, southeast Iran. These hospitals have the highest rate of patient admission to the ICU with various diagnoses. The nurse-to-bed ratio in the ICU is 1:2.
Participants were selected using a purposeful sampling method from the ICU nurses who had rich experiences regarding the subject of the study and were willing to participate in the study. Sampling was purposively done with a maximum variation in terms of participants’ gender, educational level and work experience (table 1).
Demographic characteristics of the study participants
Patient and public involvement
Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.
Data collection
The study was conducted between January 2022 and October 2022. Data were collected through in-depth individual semistructured interviews. Participants were ICU nurses with more than 5 years of working experience. In this study, in-depth semistructured interviews were conducted with 14 nurses. The time and place of the interviews were determined by the participants. All of the interviews, which lasted between 30 and 60 min, were conducted by one researcher. The researchers developed an interview guide and assessed the questions for clarity and relevance to the study’s goals. The updated questions were used. It was uploaded as online supplemental file 2. The interviews were conducted by the first author (NA), a 39-year-old female assistant professor at the Kerman University of Medical Science, and the corresponding author (ZR), a 40-year-old female PhD in nursing at the Golestan University of Medical Science. The interviews started with the general question ‘Please talk about a COVID-19 disease’s end-of-life care experience that you have faced with that.’ The interviews continued with the question ‘How was caring for these patients different from other patients for you? Describe your experiences.’ The subsequent questions such as ‘How did you feel at that time?’ were guided based on the information provided by the participant and on the researcher’s desire to clarify relevant issues.16 Data saturation was achieved after interviewing 12 participants. Two additional interviews confirmed this, as no new insights were gained.
Supplemental material
Data analysis
Data were analysed through a five-step conventional content analysis method proposed by Griesheim and Landman.17 In the first step, each interview was transcribed word by word. In the second step, the interview transcript was reviewed several times to obtain a sense of the whole. In the third step, each interview transcript was considered as the unit of analysis, and then meaning units were identified and coded. The first author analysed the total data, while the second author analysed half of the textual data. Two authors then compared the codes and revised minor disagreements after discussion. In the fourth step, codes are grouped into subcategories according to their conceptual similarities and differences. In the fifth step, subcategories are compared with each other, and the latent data content is identified and presented as the categories. Eventually, three categories were merged into one of the main categories based on the latent data content. The final three categories and one main category were examined by all the authors to ensure a clear difference between categories and subcategories and to fit the data within each category. MAXQDA V.10 software18 was used for data management and analysis. An example of data analysis is shown in table 2.
Example of data analysis
Trustworthiness
To determine the accuracy of the data, four criteria of credibility, dependability, confirmability and transferability were used.19 Credibility was established using member and peer-checking, prolonged engagement and maximum variance of participants’ selection. For instance, for member-checking, a brief report of the findings was given to two clinical nurses, who were asked to reflect on their experiences and perspectives on the analysis report for researcher assurance. For peer-checking, two qualitative researchers approved the primary codes and categorisation process. Transferability is achieved via the provision of a rich description of data collection, analysis processes and findings to allow the readers to match the findings with their contexts.
Ethical considerations
The Research Council and the Ethics Committee affiliated with the Kerman University of Medical Sciences approved the study proposal with code IR.KMU.REC.1400.380. The researchers invited participants to the study. Participants were allowed to think, and then they entered the study after the call. The aims of the study were explained in detail to the participants. The following information was given to the participants: the voluntary nature of the participation, their right to privacy, anonymity and confidentiality, as well as the right to withdraw from the study at any time without any penalty. The participants then confirmed an informed written consent form.
Results
14 ICU nurses, comprising 9 women and 5 men, participated in this study, with a mean age of 33.79±5.07 and a mean work experience of 8.64±3.5 years. 10 participants held a bachelor’s degree, while 4 held a master’s degree. The participants shared their experiences related to end-of-life care for patients with COVID-19. Through the analysis, 365 primary codes were extracted. Four primary themes emerged from their responses: death anxiety stemming from COVID-19 infection; physical and psychological consequences of caring for patients dying of COVID-19; confusion surrounding end-of-life care for patients with COVID-19 and unbelievable deaths (table 3).
The categories and subcategories extracted after data analysis
Death anxiety stemming from COVID-19 infection
Most of the participants expressed fear of their own death and that of their loved ones due to COVID-19 infection. The participants expressed that by delivering end-of-life care to COVID-19 patients, they were exposing themselves and their loved ones, including children, spouses and parents, to the risk of infection, which could lead to fatal outcomes. The participants were apprehensive about the lack of adequate personal protective equipment during patient care and experienced severe anxiety with each patient’s death.
I am concerned that I may also be susceptible to the virus. I frequently wonder whether the masks I wear offer enough protection against the possibility of death. The reality is that I am anxious about the prospect of contracting the virus and the potential for the pain and suffering that comes with this type of death. (P4)
The psychological pressure experienced by one of the participants has been expressed in such a way that the fear of contracting COVID-19 is the source of it all:
My fear of contracting COVID-19 has escalated significantly since my son’s diagnosis. As an ICU nurse, I am in regular contact with numerous patients infected with the virus, and it is distressing to see how some young individuals died despite showing only minor symptoms. Whenever my son coughs, I become extremely anxious, and my thoughts immediately turn to the possibility that I may have contracted the virus myself. The result of this disease is terrifying, and it is a constant source of worry for me. (P9)
Another nurse stated in confirmation of this issue that:
I live with my mother, and I am anxious about the possibility of being asymptomatic and infected with COVID-19. I fear that my mother may contract the disease and become ill. As a precautionary measure, I have separated my room from the rest of the house. The severity of COVID-19 is daunting, and it has instilled in me a deep sense of fear and concern for my well-being and that of my loved ones. (P6)
The experience of the participants in this study was not limited to the constant worry of facing the death of their loved ones as a result of contracting COVID-19, and it revealed different consequences for them by enduring the situation.
The physical-psychological consequences of caring for dying patients with COVID-19
The participants reported that nurses experienced excessive fatigue while providing care for patients who were dying from COVID-19. Due to the shortage of nurses, they had to work long and intensive shifts, which further exacerbated their exhaustion.
One of my colleagues has been infected with COVID-19 and has been absent from work for a week. As a result, we have to take on more shifts, which has been exhausting. We are not getting adequate rest due to the increased workload. (P11)
Another nurse stated that new staff are a cause of excessive fatigue and energy draining in these conditions and stated as follows:
To address the shortage of staff, we have hired two contract recruiters but training them has been taxing. We have to closely monitor and direct them from one room to another, which is draining our energy. (P6)
Nurses experienced not only physical but also unwanted psychological consequences. Nurses providing end-of-life care for COVID-19 patients expressed concern over their lack of knowledge and skill in caring for these patients, which led to feelings of guilt over providing unsuccessful care.
I am not sure why nothing seems to be working. I tried everything I could, but, strangely, it did not help, and the patient ultimately passed away. I am constantly grappling with my thoughts and emotions, questioning whether I did enough to fulfill my primary role. (P9)
Given the acute nature of the disease, I had to start working with minimal training. I am not confident in my knowledge of the disease, and I am uncertain whether I am providing adequate care. This issue is causing me significant distress. (P7)
The nurses were disheartened by the uncertain future and the mounting pressure from those around them to leave their jobs. Despite their empathy for these patients, they also experienced a sense of despair regarding the future improvement of the disease. The increasing daily death toll had a significant impact on their families, and they had to contend with the pressure from their loved ones to leave the nursing profession.
My father calls me every day after watching the news and urges me to quit my job before it is too late. He does not want me to go to work anymore due to the risks involved. (P10)
Feelings of worry and disappointment about the uncertain future of COVID-19 were expressed by the words of nurses 2 and 4:
I felt incredibly disappointed when I heard on TV that the death toll due to COVID-19 was rising worldwide. The uncertainty of the future and when this pandemic will come to an end is overwhelming. (P2)
We hoped for a definitive vaccine to be developed, but that has not yet happened. The number of deaths continues to rise each day, and the future is uncertain. We do not know what tomorrow holds for us. (P4)
The nurses, who were a source of hope in the difficult moments of the lives of the patients, were affected due to workload and psychological pressure, and they all expressed an unpleasant experience so that some nurses had to rethink the way of providing care and not ensure that the procedures were running.
Confusion surrounding end-of-life care for patients with COVID-19
Nurses faced several challenges while caring for patients with COVID-19, including uncertainty about how to provide care due to the unknown nature of the disease, the lack of proper equipment and insufficient knowledge of care procedures. Nurses found the shocking nature of the disease to be a hindrance to acquiring sufficient knowledge and providing optimal care. Factors such as inadequate knowledge of the disease, unfamiliarity with its symptoms and complications, lack of familiarity with safe care practices, insufficient personal protective equipment, inadequate facilities and equipment and the increasing number of deaths posed significant challenges for the nurses. These challenges left them feeling confused and unsure about how to provide the best care for their patients.
It is confusing to see that despite following treatment protocols, the number of deaths does not seem to decrease. I am unsure whether these protocols are truly effective in treating the disease. (P13)
My colleague showed unwavering dedication to her patients, never leaving their side even for a moment. She diligently followed the new protocols established by the Ministry of Health, hoping that this patient would be the one to survive. (P9)
The conditions were so ambiguous that even the previous successful experiences of colleagues were not effective. This is what one of the participants said in confirmation:
Unfortunately, when we consulted with the doctor, we did not receive a favorable outcome. It seemed as though the experiences gained from treating previous patients did not necessarily apply to the next one. This left us feeling confused and uncertain. (P4)
Despite the difficulties and shortages, the nurses expected to see the results of their day and night efforts effectively, but unfortunately, this was not the case. The ambiguity and confusion in providing care was to the extent that it led the nurses to unbelievable and unimaginable deaths.
Unbelievable deaths
The participants in this study bore witness to devastating deaths among their loved ones, colleagues and patients who were difficult to comprehend and process.
I am unsure why many young patients without any prior health risks succumbed to the disease and passed away. The idea of death among the young and previously healthy patients was unimaginable, and it was a reality that I repeatedly witnessed. (P5)
It is a shocking experience to witness a young man gasping for air despite receiving all the necessary breathing measures, and pleading for additional help to avoid succumbing to the disease. (P8)
It is difficult to believe that my newly married colleague’s mother fell ill, seemingly recovering, but my colleague ultimately passed away in a short period. (P12)
Several factors affected the type and intensity of nurses' experiences regarding the deaths of patients. Among these, we can mention the suddenness of death and how to receive and perceive the cause of death. The nurses admitted that the cause of death of the patients was not clear to them.
On the other hand, the conditions resulting from the COVID-19 disease, such as quarantine, the shortening of the patient’s visit time at the bedside of a deceased patient or sudden death after discharge, have created difficult conditions for nurses. Experiences with deep pain from dying alone and far from relatives have been expressed in the accounts of nurses.
Discussion
This study aimed to examine the experiences of nurses in providing end-of-life care for patients with COVID-19. The participants reported that providing this type of care resulted in death anxiety and physical and psychological consequences, such as fatigue, a sense of guilt, frustration and pressure, from their peers and families. The nurses were also challenged by the unpredictable nature of the disease, insufficient knowledge of the patient and confusion about providing care. They encountered numerous cases of unexpected deaths, adding to their emotional burden.
The most significant experience reported by the nurses was death anxiety due to COVID-19. They were concerned about the possibility of contracting the disease or transmitting it to their loved ones. This finding is consistent with other studies examining the experiences of nurses caring for patients with COVID-19. For instance, a systematic review and meta-analysis found that 22.6%–36.3% of healthcare workers reported experiencing anxiety.20 Due to the highly contagious nature and high mortality rates of COVID-19, as well as the frequent need for critical care and ICU admissions, healthcare workers and other patients experienced fear and anxiety. Mental health interventions were advocated to address these concerns. It is worth noting that media and social networks played a role in exacerbating fear and anxiety by disseminating exaggerated or misleading information.21 Despite the risks of infection and transmission to their families, frontline nurses bravely continued to care for patients with COVID-19, as did many nurses in other parts of the world.22 Nurses adapted to the challenging circumstances, so they could continue providing care to patients.23
Another significant experience reported by nurses during end-of-life care for patients with COVID-19 was the physical and psychological consequences. Nurses faced pressure from their families to leave their jobs, experienced extreme fatigue and felt guilt about their inability to provide optimal care. Other studies have also highlighted the emotional challenges faced by nurses during the pandemic. The early stages of the COVID-19 pandemic resulted in a range of emotions, including physical and emotional symptoms. Emotional responses were divided into two categories: those with an internal source such as stress and fatigue and those with an external source such as a sense of guilt, despair and loneliness.24 A study conducted in Greece reported relatively high levels of fatigue among nurses caring for patients with COVID-19 compared with those caring for other patients.25 Dealing with an emerging and unknown disease, a high workload and a large number of patients were factors that contributed to excessive fatigue among nurses.
Nurses in this study reported feeling confused while providing end-of-life care for patients with COVID-19. They expressed uncertainty and doubt in their ability to provide adequate nursing care due to insufficient knowledge and training in managing this disease. The lack of reliable care provision while preserving the dignity of the dying can have negative effects on how people, including nurses and relatives, process grief after the critical phase of the COVID-19 pandemic. Recommendations were made to reduce the negative impact on family members during end-of-life care for patients with COVID-19. These included establishing active communication with bereaved families, providing detailed information and allowing them to say goodbye to their loved ones in person or through virtual means.13 However, nurses faced challenges in maintaining distance during end-of-life care and preventing relatives from saying goodbye to their loved ones. The lack of preparation for a COVID-19 patient’s death or the inability of their relatives to say goodbye was reported as a traumatic experience that could exacerbate the pain of mourning, cause psychological distress and complicate the mourning process.21
Another significant finding of this study was unbelievable deaths. Due to the large number of deaths within a short period, opportunities for social support and rituals related to death were limited to reduce the risk of infection.13 Although the nursing profession involves caring for dying patients, nurses experience an overwhelming mortality rate.25 The tsunami of deaths, combined with job burnout, can lead to professional collapse, even among experienced nurses. Moreover, nurses also witnessed the deaths of their colleagues. According to the WHO report, the mortality rate of healthcare workers worldwide from January 2020 to May 2021 was 115 000. However, the International Council of Nurses warns that this is a conservative estimate of healthcare worker mortality.16 This study expressed the experiences of nurses in the field of providing end-of-life care to patients during the COVID-19 pandemic. Although there are studies in this field, this study specifically showed the huge volume of unbelievable deaths during the COVID-19 pandemic, negative consequences, such as death anxiety, and the physical and psychological consequences, caused by anxiety imposed on nurses. This importance has received less attention in studies. It adds to the strength of the body of knowledge concerning ICU nurses’ experiences during COVID-19.
It is necessary for the authorities to provide more support to the nurses. It is necessary to adopt new policies to increase the resilience of nurses in the field of emerging diseases and to give nurses the necessary knowledge. Seeking help from psychologists and psychiatrists, and planning for the proper recovery of nurses in the face of an emerging disease epidemic, can be helpful.
Conclusion
The present study addressed the experiences of Iranian nurses providing end-of-life care during the COVID-19 pandemic. The findings indicated that nurses experienced anxiety, excessive fatigue and guilt while providing end-of-life care, and the high mortality and unbelievable deaths were traumatic experiences for them. These results could be beneficial for nurses in future pandemics and when facing health restrictions to provide end-of-life care. Health managers should take measures to provide emotional and psychological support to meet the needs of nurses, dying patients and their relatives.
Limitations
However, the present study had several limitations. The experiences reported by nurses in our study were specific to a particular group, region and period during the COVID-19 pandemic. The experiences of other groups of nurses may differ, which limits the generalisability of the results. Furthermore, the participating nurses were from southeastern Iran, and the experiences of nurses from other regions have not been explored. Considering that the sampling of the study was purposeful, the participants cannot represent all nurses. Since the data analysis was done by researchers who were experienced in this field, strong bracketing may not have been done, although they did their best. Therefore, further studies are needed to investigate the experiences of nurses from other regions.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Ethics approval
This study was approved by the Ethics Committee of the Kerman University of Medical Science with Ethics No. IR.KMU.REC.1400.380. All methods were carried out according to relevant guidelines and regulations. Participation in this study was voluntary. All participants were explained about the objectives and process of the study, and their informed written consent was obtained.
Acknowledgments
We thereby appreciate all the nurses participating in this study and the hospital officials.
Footnotes
Contributors NA and ZR: conceptualisation, study design and research question formulation. ZR: data collection. NA: data analysis. ZR and NA: original draft preparation, review and editing. NA: guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.