End of life care during the COVID‐19 pandemic: A qualitative study on the perspectives of nurses and nurse assistants

Abstract Aim To explore nurses’ and nurse assistants’ experiences of providing end‐of‐life care during the COVID‐19 pandemic in Austria, Germany and Northern Italy. Design A qualitative explorative interview study. Method Data were collected between August and December 2020 and analysed using content analysis. Healthcare professionals (nurses (n = 30), nurse coordinators (n = 6) and nurse assistants (n = 5)) from hospitals (n = 32) and long‐term care facilities (n = 9) in Austria, Germany and Northern Italy were interviewed for this study. Results Five main categories were identified as follows: (i) end‐of‐life care involves love and duty, (ii) last wishes and dignity of the patient, (iii) communication with the family, (iv) organizational and religious aspects and (v) personal emotions. Results indicate that more training and guidelines are needed to prepare nurses and nurse assistants for end‐of‐life care during pandemics. Public contribution This research can help prepare nurses and nurse assistants for end‐of‐life care in pandemics and will be of value for improving the institutional and government health policies. Furthermore, it can be of value in preparing training for healthcare professionals patient–relatives.


| INTRODUC TI ON
Coronavirus disease 2019 is a respiratory infectious disease caused by SARS-CoV-2 (World Health Organization, 2022). Health care professionals play a significant role in combating this health problem, particularly when patients suffer from severe symptoms that require hospital admission for treatment or even palliative care, as the main providers of end-of-life care. Several studies have demonstrated that nurses and nurse-assistants experience pressure, burden, and emotional challenges concerning an increase in patient deaths (Hanna et al., 2021a(Hanna et al., , 2021bPodgorica, Flatscher-Thöni, et al., 2021;Podgorica, Pjetri, et al., 2021;Podgorica, Shabani, et al., 2022) and insufficient resources to provide care (Mehta et al., 2021;Podgorica, Shabani, et al., 2022;Podgorica, Zenzmaier, et al., 2022). Previous studies focused on emotional and psychological distress that affected health care professionals' well-being (Huang et al., 2020(Huang et al., , 2021Mitchinson et al., 2021;Rathnayake et al., 2021). Health care professionals had to balance their duties and competencies with emergent choices and decisions in practice (Galehdar et al., 2020;Palacios-Ceña et al., 2022;Turale et al., 2020). Patient-centered care was rarely possible due to a lack of resources, and health care professionals often had to decide whom to provide care to (Jia et al., 2021;Palacios-Ceña et al., 2022).
During the COVID-19 pandemic, and in particular, in its initial phase, many hospitals and nursing homes applied strict admissions restrictions for visitors to limit disease transmission (Iness et al., 2022;Stratil et al., 2021). For instance, in Italy, in approximately half of the intensive care units (ICUs), visit patients were generally not allowed, and in the majority of the remaining ICUs, visits were only allowed for major events and mainly from the same family member (Langer et al., 2022). The visiting restrictions led to relatives' emotional issues that affected health workers. Nurses and nurse assistants could not give compassionate care to each patient, making them feel helpless to dying isolated patients without family and friends (Hanna et al., 2021a(Hanna et al., , 2021bPalacios-Ceña et al., 2022).
Caring for patients and their relatives, nurses and nurse assistants tried to find alternatives to visits, such as video calls during the end of life (Hanna et al., 2021a).
The present study aimed to explore nurses' and nurse assistants' experiences while giving end-of-life care for patients with  in three EU countries (Austria, Germany, and Northern Italy). Nurses and nurse assistants were included in this study because they offered care as a team for patients with COVID-19. Our findings are of value for improving institutional and government health policies and may help health workers prepare for future pandemics.

| AIM AND OBJEC TIVE S
This study aims to explore nurses' and nurse assistants' experiences of providing end-of-life care during the pandemic. Nurses' and nurse assistants' relationships with patients and patients' relatives and their personal emotions while caring for patients with COVID-19 in Austria, Germany and Italy were investigated.

| Ethical considerations
This study followed the principles of the Helsinki Declaration (World Medical Association, 2008). All participants received written and oral information about the study and provided written and verbal consent. Informed consent of the study participants was obtained in written form. Once the data were collected, the participants were anonymized using identifiers (P01-P41), and their names were removed from the transcribed data. The principal researcher kept the primary audio and video data in a secured file. The rest of the team worked with the pseudonymized transcripts. During the entire study, the participants were free to withdraw and request the deletion of their data at any time (e.g., via e-mail) without any negative consequences. The Ethical Board of the principal researcher's institution approved this study (Nr: 2767; Date 10.06.2020).

| Context and settings
This study was conducted in hospitals and nursing homes in three neighbouring European countries: Austria, Germany, and Northern Italy.

| Participants' recruitment
Purposive sampling was used based on relevance to the research questions (Creswell & Plano Clark, 2018). The inclusion criteria included registered nurses and nurse assistants working in a hospital or nursing home and providing direct end-of-life care to patients diagnosed with COVID-19. Participants were recruited via professional contacts. The researchers contacted them and sent the information about the study via e-mail to seventy participants who expressed interest in participating.

| Data collection
An interview guide to obtain information regarding nurses' and nurse assistants' experiences while giving end-of-life care for patients with COVID-19 was developed based on the international literature (the interview guide is provided in Table S1). Two female nurse researchers (the first and the second author of this paper) conducted semistructured interviews in the participants' first language between August and December 2020. Interviews were conducted online via Zoom, video and audio and lasted between 50 and 120 min.
Interviews were transcribed verbatim using F4 software. Data were collected until the same topics started to be repeated, and nothing new came out; then, saturation was reached with 41 conducted interviews. The researchers took field notes to provide insights into participants' behaviour expressions and events during the interviews (Janghorban et al., 2014). Sociodemographic characteristics were collected by a questionnaire sent via e-mail.

| Data analysis
Transcripts were checked for accuracy by spot-checking, repeatedly reading, and analysing four transcripts and field notes (MacLean et al., 2004). The original or translated transcripts were analysed using the Qualitative Content Analysis of Mayring as a methodical basis (Mayring, 2014(Mayring, , 2015 and with the help of MAXQDA2020 software (Kuckartz & Rädiker, 2019). Following the procedural model for inductive category formation, the research team worked through the material three times (Kuckartz, 2016;Kuckartz & Rädiker, 2019;Mayring, 2015). This process created inductive categories to structure the material with recurring topics (Table 1). The coded segments were first paraphrased, coded, and subsequently subsumed into (sub)categories (Table 1) to create a code system that fit the observations and the interview (Mayring, 2015). The authors performed the final coding separately, and minor disagreements were resolved within the team.

| RE SULTS
Forty-one interviews were conducted with nurses (N = 36) and nurse assistants (N = 5). The complete findings from the sociodemographic questionnaire are given in Table 2.
Five main categories were identified and summarized through the qualitative content analysis in Table 3.

| End-of-life care is love and duty
All participating nurses and nurse assistants described end-of-life care for patients with COVID-19, including being near to them and not letting patients die alone. Given strict visiting limitations or bans, it was essential for some participants to act like family members in the very last moments of a patient's life. 4.1.1 | Being human and never letting the patient die alone Participants took on the role of family members while the patients were at the end of their lives and tried to find time to be there: "What we tried to do is never let anyone die alone, okay? Therefore, the health workers did what the relatives would do at the time of death. When the patient's death was confirmed, it was also communicated to the relatives to know that these people did not die alone." (P3). "Being human" was described as being there for the patient, respecting them while alive and after death. One of the Italian participants stated that the worst experiences were the ways in which many patients died, with great difficulties, pain, and alone. "When we knew that there was nothing more to do, we tried to meet the needs of the patient, the preferences more than anything else, so we tried to satisfy them in the best way." (P12).

| Adapting care
Despite being in a chaotic situation facing a pandemic without feeling prepared, participants tried to adapt care as much as possible to satisfy patients' needs. One participant emphasized that it was a moral obligation to care for patients with love and assist them until the last moment of life: "People died there as if they were flowers, those withered flowers that died in two seconds, so every ward was chaotic. It was hard, but with so much love from all my colleagues, passion, and a sense of duty. I have a nice big task, and you only gave them your hand to accompany them to the mortuary, and that is it." (P18).
Many interviewees expressed compassion for patients or reported simple acts, such as playing patients' favourite music in the background, dabbing them with their favourite perfume, or simply holding their hands while dying. This was mainly reported in nursing homes, as participants had built relationships with patients over time.
Due to stringent visitor admission restrictions applied during the first wave of the pandemic, even close family members were frequently not allowed to visit patients during the pandemic. Participants used different strategies to handle this situation, such as enabling virtual communication or trying to provide as much personal support and companionship as possible. "Another sad thing was the separation of the relatives. I had to be a nurse, a wife, a mother, a lover, and everything for the patient. That was the most heartbreaking thing, the most heartbreaking thing I could ever feel. I hope I will never feel that again" (P8, referring to the death of a colleague who died one month before his retirement).

Segment Paraphrase Code Subcategory Category
To think that at the end of the day, these people do not even have the dignity to stay, to be clothed, for example, or the chance to be greeted by their own family, was hard. (P3) Dying without family near and without usual rites means no dignity.

Dignity Dying without dignity
Handling the last wishes and dignity of the patient Uh, saying goodbye to patients who died was stressful and is an exaggeration. Nevertheless, it makes you think about how humanity has developed when you say goodbye via the iPad. Therefore, the relatives could not, it was the only possibility, and it is just slightly general, it is complicated there to say, it is a burden with the relatives. (P24) Greeting the family members via iPad looks strange and not human, but it was better than nothing. Interviewees felt guilty, useless, and helpless when they found themselves unable to provide appropriate care due to a lack of medical and technical equipment, competence, and knowledge about COVID-19. They reported episodes where medication was interrupted, and patients were left to die, which they considered unethical: "They did not get anything anymore, they did not get any painkillers or anything, and that is irresponsible and unethical. (…)" (P28).

| Dying without dignity
Almost all participants reported how patients died without dignity.
It was frequently impossible to perform the last rituals and to dress the dead: "To think that at the end of the day these people don't even have the dignity to stay, to be clothed, for example, or the chance to be greeted by their own family, was hard" (P3, referring to deceased patients whose corpses were immediately transferred to the morgue and cremated). Participants from Austria and Germany did not report similar experiences, as triage was unnecessary in their institutions.

| Religious last rites
Italians placed great significance on religion; they saw many people dying and had stringent rules due to the pandemic. Participants gave care and played the role of a family member or even a priest.
Participants from Austria and Germany mentioned the presence of a priest. In Italy, regional regulations prevented most deceased from receiving religious last rites, as none could enter the ICU, other COVID-19 departments, or nursing homes. "Apart from that, everyone could pray within themselves, and there were no priests. It was impossible; you could not get a priest in to bless them, and (…) the funerals were done as quickly as possible. Therefore, all that spiritual and human part was missing slightly because of this emergency" (P22). Interviewing some participants was difficult due to their emotional state; as one of the interviewees said, "Please don't end the interview now, because I want you to listen to me until the end."

| Personal emotions
While the German and Austrian participants tried to report calmly and objectively, the participants from Italy were sometimes very stirred up and emotional due to the re-experiencing of critical situations in the interviews. Sometimes the interview ended, and the recording stopped, but the interviewees kept talking for more hours. In this and other studies, the high mortality rate of patients with COVID-19 triggered many participants' deep sense of grief. They described losing one patient after another (Gordon et al., 2021;Montgomery et al., 2021;Podgorica, Zenzmaier, et al., 2022).

| DISCUSS ION
Participants dealt with patients who talked to them for a minute, then decompensated and died shortly thereafter, despite all efforts to save their lives (Podgorica, Zenzmaier, et al., 2022;Robinson & Stinson, 2021;Simeone et al., 2022).
Although grief was exacerbated by the absence of these patients' relatives at the bedside due to facility regulations, participants expressed compassion. They acted as if they were the relatives of the patients accompanying them to the very end. The research from Arcadi et al. (2021), and Carnesten et al. (2022) emphasizes the importance of compassion concerning well-being and care based on love, empathy, and the intention to alleviate suffering and support the health of patients (Arcadi et al., 2021;Carnesten et al., 2022).
During these critical moments, despite all the difficulties in providing end-of-life care, the study participants tried to be humane and respect the patients by staying close to them, not letting them die alone, and fulfilling their duties and responsibilities. In this context, Liu et al. (2020) and Mitchinson et al. (2021) also reported that health care workers performed their tasks by not letting patients die alone and offering them a death as bearable as possible (Liu et al., 2020;Mitchinson et al., 2021).
Considering their professional and moral obligation to care for the patients, the nurses and nurse assistants in this study, despite their lack of evidence-based knowledge about the disease, took great responsibility by adapting the care and supporting the patients until their last moments. The patterns found in this study are similar to the findings identified in various studies worldwide Smeltzer et al., 2022). Indeed, (Specht et al., 2021), who found that nurses have a strong sense of responsibility and professional duties, can support our findings. Likewise, Scrymgeour et al. (2020) studied participants demonstrated the ability to take responsibility, adopt care, and cope despite various pandemic obstacles (Scrymgeour et al., 2020).
Despite participants' best efforts, the pandemic affected their ability to provide high-quality care. Being unable to provide the desired quality of care, not knowing if treatment protocols were appropriate, wondering if they had done enough to save patients' lives, lacking the necessary time, and keeping families away from the bedside of the dying led to intense feelings of guilt and helplessness, as well as ethical conflicts.
Sperling (2021) also reported in their study that ethical conflicts arose when nurses could do nothing to save their patients' lives and could not provide optimal care for COVID-19 patients due to limited treatment options and resources (Sperling, 2021). Other studies described the inability to offer COVID-19 patients the needed care  and feelings of fear, guilt, and helplessness in the face of an unknown disease (Arcadi et al., 2021;Podgorica, Zenzmaier, et al., 2022;Simeone et al., 2022).
Given the strict rules on the use of protective equipment and the limited opportunities to touch and talk to isolated patients, the nurses and nurse assistants in this study struggled to provide good care. This finding is consistent with other studies in which nurses found it challenging to touch, care for, and build relationships with isolated patients (Hanna et al., 2021a(Hanna et al., , 2021bOnwuteaka-Philipsen et al., 2021;Rathnayake et al., 2021).
Hence, new protocols were established to treat the corpses to prevent the spread of COVID-19. Participants prescribed an undignified death for patients without the presence of family members, in isolation, and with limited burial ceremonies. Selman et al. (2021) supported these findings by reporting that people died in isolation, without burial or rituals, yet experienced the ultimate injustice of dying without their loved ones to mourn for them (Selman et al., 2021).
Similar to Mannix et al. (2020), participants in the present study had tremendous difficulties fulfilling the wishes of patients and their families (Mannix et al., 2020). Because of the complex circum-  Dempsey et al., 2022;Langer et al., 2022;Thrysoee et al., 2022).
Throughout these situations, nurses relied upon virtual communication technology to enable families to connect and communicate with patients while their loved ones were dying. Copel et al. (2022), Dempsey et al. (2022), andLanger et al. (2022) asserted that online communication could sustain health care professionals during a pandemic Dempsey et al., 2022;Langer et al., 2022).
In line with previous research, our findings emphasize the need and importance for training on communication with isolated patients and family members during end-of-life care in the event of a pandemic (Dempsey et al., 2022;Podgorica, Pjetri, et al., 2021;Thrysoee et al., 2022). Therefore, nurses and assistant nurses need support and facilities for virtual technologies and training.
During the COVID-19 pandemic, the number of patients who required intensive care treatment outnumbered the number of intensive care beds in many regions, even in industrialized nations.
Consequently, the restrictions and guidelines imposed by governments and authorities worldwide have generated many organizational problems, and triage has sometimes become necessary (Akalpler & Okumus, 2018;Arcadi et al., 2021;Catania et al., 2021;Muz & Erdoğan, 2021 In the same direction, in normal conditions, the family provides the majority of spiritual care to the patients who are living their last moments at home or the hospital, as previous studies have shown (Rathnayake et al., 2021). In this context, health professionals are responsible for establishing this link between the family, religious personnel, and the patient, creating a safer and more comfortable environment (Nascimento et al., 2016). showed that the care of dying patients was experienced emotionally by the participants, who reported anxiety, agitation, stress, and sleep disturbances Galehdar et al., 2020;Podgorica, Zenzmaier, et al., 2022;Smeltzer et al., 2022). Other studies have also shown the importance of the family and team supporting each other and caring for each other's mental health (Al-Amer et al., 2022;Podgorica, Zenzmaier, et al., 2022).
There is a need to provide psychological support and care for those affected.

| Strengths and limitations
Our results may affect the improvement of care and management during pandemics. This is the first study that provides information on nurses' and nurse assistants' experience in end-of-life care during the COVID-19 pandemic in different settings (hospitals and nursing homes) in three different EU countries. It contributes to the literature on caregiving during pandemics. Most of our sample were nurses because they were health care professionals with more ex-

ACK N O WLE D G E M ENTS
We are very grateful to all participants for sharing their experiences. We want to acknowledge the support provided by Verena Gebhart, Manuel Pittl, and Natalia Schiefermeier-Mach, Walter Draxl.

FU N D I N G I N FO R M ATI O N
The author(s) received no financial support for this article's research, authorship, and publication.

CO N FLI C T O F I NTE R E S T S TATE M E NT
The author(s) declared no potential conflicts of interest concerning this article's research, authorship, and publication.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data are not publicly deposited but are available (University of Applied Sciences Tyrol, Austria) upon request to the authors.

S U PPLEM ENTA L M ATER I A L
Supplemental material for this article is available online.