In the analysis, three domains described nurses’ positive and negative approaches to PC during the pandemic as well as the strategies they used. One overarching theme and nine subthemes were created from the domains (Figure). Each subtheme is illustrated with quotes from Swedish (S and nr) and Norwegian (N and nr) participants.
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Overarching theme: Being a round square in an extremely challenging situation
The overarching theme encompasses the nurse’s descriptions of their feelings of being a round square in an extremely challenging situation. Being a round square in the pandemic was a prerequisite for the character the PC provided, and it built on and interconnected with the three domains and nine subthemes. This approach gave the nurses a structure in daily PC when they experienced the pandemic as infinite, chaotic, and exhausting. Their inner attitude helped them to withstand difficulties, as they were determined to relieve the suffering of the patients and next-of-kin. The nurses struggled to be true to their profession and compliant with the patients’ wishes and needs. They constantly reflected on issues such as “How do we do this now?”, “How do we want it?”, and “Who should be there?”. It was a completely new emotional situation involving negative feelings, such as fear and involuntary distancing. The nurses needed to adapt in a very short time to the new situation, and the instructions and recommendations related to the pandemic could change very quickly.
Domain 1
Providing modified PC
Modified PC meant that the prerequisites and the PC approach changed in negative and positive ways during the pandemic. Nurses’ negative feelings when providing PC during the pandemic had a profound impact on them, and they had to process difficult emotions, such as sadness and fear. They mainly performed hands-on nursing interventions, such as caring for the patient’s body by relieving symptoms and adapting the care environment. Psychosocial and existential PC needs could not be prioritized. This meant that person-centered care had to take a backseat. The subthemes related to this domain are as follows: feelings of being inadequate or adequate, caring for a dying patient or a dead body, and supporting next-of-kin in saying goodbye from a distance.
Subtheme: Feelings of being inadequate
Nurses’ stress levels increased during the pandemic, and spontaneous nursing care was lost, along with presence. Routines were disrupted, and it became difficult for the nurses “to be their profession”; they felt insufficient when caring for many patients simultaneously who were equally seriously ill or dying.
“Caring for patients at the end-of-life is the most important thing we do, an honor; there must be no mistakes” (S6).
The nurses strived to provide the best possible person-centered nursing care, but their time was limited. Nursing care was medicalized and became instrumental. The nurses experienced an inability to provide human support and physical closeness, such as touch and hugs, because of the protective equipment. They wished they had time to talk more with the dying patients and to sit by their bed more often.
“The patient’s overall care needs are more than you can cope with” (S1).
“You’re there to help patients to live in a dignified manner, and when you feel that you haven't done that, it's…it's painful” (N20).
The nurses sensed a pattern of not being able to provide care as usual as the virus spread rapidly.
Subtheme: Caring for a dying or dead body
When nurses were caring for severely ill and dying patients, the situation was sometimes chaotic because the pandemic and death occurred unusually fast. It was a race against the clock all the time.
“They were holding up really, really well, then they just crashed; then it was really bad” (S3).
It could take minutes or hours, and two to three patients died per shift, young and old. Sudden emergencies could occur; in these cases, the nurses reported that they quickly wrapped the patient in a special black body bag and cleaned the room, and then the next patients were placed in the room. Many patients died, and patients were constantly being cycled through the hospital, like an assembly line which was considered undignified.
Patients with COVID-19 died in a much more unpleasant way than other patients. They typically had a lot of anxiety and pain, and it was more difficult to relieve symptoms. Patients commonly had respiratory problems that could deteriorate very quickly, and they needed a lot of oxygen, which did not always help.
“When the disease changes, you know that this is not going to work” (S1).
“It was a bit of a shock when we thought that now they’re getting a bit better, and then they suddenly [patients] got much worse again” (N10).
The nurses could check on the patient in the morning and leave for 5 minutes, and when they returned, the patient could be dead. One nurse described that it was a relief when death came fast:
“It was nice, that it went quickly, that they didn’t have to lie there and suffer anymore” (S3).
At the beginning of the pandemic, many patients died completely alone; crowding was common, and the nurses constantly thought about where to place the patients. Many patients did not have their own room, and many were placed in other areas of the ward, such as the dining room. The nurses reflected on the idea that patients have the right to a peaceful and dignified death, but many patients suffered during the pandemic.
“It was just patients who were really struggling at the end, with their breathing and everything, and we couldn’t do anything more; they were given morphine and midazolam and what they could get at the time, but…but it wasn’t a quiet death. And that was tough. I struggled a lot for a while afterwards” (N20).
Situations like this were described as a huge failure, and they occurred several times a week during the pandemic.
Subtheme: Supporting next-of-kin in saying goodbye at a distance
Supporting next-of-kin during the pandemic was challenging, especially in the beginning when families could not visit the patient; they dealt with various barriers, such as visit restrictions and a lack of protective equipment throughout the pandemic.
“The restraining order was hard for a while” (S1).
To reduce physical contact, one main action was that next-of-kin had to communicate and say goodbye at a distance through digital equipment. If next-of-kin were unable to visit because of restrictions, digital equipment such as iPads, Zoom, or Facetime were used for communication between the patient and their family members. The nurses helped the patient hold the tablet or use other digital means. At the beginning of the pandemic, next-of-kin could not visit the patient at all, and later on, they had to call and book a visit in advance. Nurses described that this was emotionally difficult for the next-of-kin, and many were in shock and grief. One nurse reported that family members would attempt to visit their ill relatives even if they experienced difficulties:
“Everything for their spouse who was inside. They called daily, maybe twice a day...yes...I didn’t expect this” (N1).
Some next-of-kin had a different cultural background, and disagreements could arise regarding what constituted a dignified death. This could lead to conflicts between the family and the nurses as well as among nurses. Regardless, the relationship with next-of-kin was experienced as special and unique; it was important for the nurses to pay attention to them and thus reduce feelings of distance.
“It may sound like a triviality, but I think it’s very important to show interest for the next-of-kin…that you can see those who are around the patient” (N3).
The nurses worked to support the next-of-kin and the patients in the last moment of life, and they strove to ensure that death was as dignified as possible. The nurses called the next-of-kin after working hours to update them about the patient’s condition. This was appreciated and meaningful and gave the next-of-kin a sense of control. When a patient’s condition worsened, the nurses brought the phone into the patient’s room so that the next-of-kin could talk with the patient if possible. The nurses described that it was important for the next-of-kin to talk to the ill person as often as possible.
“Many next-of-kin want to be here as much as possible at the end, and then they forget their own needs a bit” (N3).
Some next-of-kin could not or did not want to say goodbye in person when death was imminent, and some were afraid of becoming infected themselves. Some chose not to stand guard because it was too difficult. Another barrier that increased distance was protective equipment, which was an obstacle to communication. Many next-of-kin chose to wear protective equipment when the patient was dying or after they died. Despite this, the moment of death could be quite peaceful, as one nurse described:
“We had a woman who was a little older, around 70 perhaps, who became very ill, and then she died, and it felt so unnecessary and difficult, but her husband sat with her and held her hand when she died” (S4).
Domain 2
Challenges concerning contamination in daily work
The nurses experienced fear of becoming infected during the pandemic, especially at the beginning of the pandemic, and they did not experience any positive aspects of the pandemic. They lived very isolated and private lives and were afraid of spreading the infection to the patients. They did not know much about COVID-19, and everyone was scared, living in uncertainty with a virus that changed all the time. The subthemes related to this domain are: protecting oneself while being afraid of infecting others, adapting procedures and constantly observing patients’ symptoms, and reflecting on nursing actions after work.
Subtheme: Protecting oneself while being afraid of infecting others
Nurses thought extensively about how long the pandemic would last and how it would develop. They continuously checked on the patients to ensure that they were not infected or spreading the virus to others, and the nurses were observant of various symptoms. If there was even the slightest suspicion of infection, the patient was isolated, and a few members of the staff cared for the ill person. Regardless, they cared for patients who they did not know were infected.
“There was one woman in particular; they took a test on Friday, and it turned out that she wasn’t infected. Then the staff cared for her over the weekend, and then she was positive [for COVID-19] on Monday, and everyone who had cared for her became very sick” (S5).
The nurses could not always protect themselves from being infected. Those who became infected worked despite symptoms such as taste and smell changes, and they also worked in different departments. This awoke feelings of guilt if they passed the infection to the patients.
“We had a COVID-19 patient; I had connected the patient and showered her, then I became afraid that I had infected her, and this stayed with me for a very long time: ‘What if I have infected another patient?’” (S4).
During the pandemic, the nurses faced a lot of hard work, but the most important thing was that patients and their relatives always felt safe and protected.
“All the time thinking ‘infection’; we do it all” (S7).
Subtheme: Adapting procedures and constantly observing patients’ symptoms
New care routines were developed during the pandemic, and all patients were tested in the morning and evening to catch any infections. The nurses always had their eyes and ears open for the slightest sign of infection, such as a cold or a patient feeling tired; those with symptoms were isolated and not allowed to socialize with other patients.
“You're always…um...observant of a lot of things and thinking about routines in dining situations, sanitizing the tables, keeping distance, putting up notes, being clear, and those who became ill were isolated” (S4).
Using protective equipment provided a feeling of security, for the nurse’s own sake, for the patients, and their family. At the same time, the equipment prevented the nurses from being present and close to patients, even though they wanted to be.
“You couldn’t touch the patient, but I did anyway, you couldn’t go in to the patient as you wanted, and that the patients really needed” (S5)
“For me, it’s been very important to use closeness as part of the care. So, I think it’s been...I’ve had [a] bad conscience because I feel that I did a poorer job” (N3).
Using protective equipment was also frustrating because it took extra time to get dressed, and at the same time, it was necessary to protect themselves and others.
Subtheme: Reflecting on nursing actions after work
The nurses tried to leave work at work and to disconnect and release themselves from thoughts on current events and difficulties during the day when they were at home. Despite this, the nurses reported that they reflected and thought about many things during their spare time to prevent infection and protect the patients from COVID-19 in the long run. Before the nurses left the unit and went home, some of them tried to reflect together and talk about the difficult situations that had occurred during the day. Nevertheless, many nurses could not disconnect themselves from work; they dreamed about it at night and continued to reflect on how the day had been.
“God, has everyone done the right thing, have we done what we should?” (S2).
They double-checked with themselves that nothing had been missed during the day and worried about the new care routines introduced. They also thought extensively about how the cooperation with other professionals had been during the day. Sometimes, the nurses felt that they did everyone’s job and that fundamental nursing care did not work. They would go to the patient’s room in the ward, and no one had changed any protection on the bed or helped the patient sit up better in bed. Some nurses did not want to visit patients who had a lot of anxiety, answer the phone, or respond to an alarm from these patients.
“I was nervous and stressed, I came out and they [other staff] were sitting on the sofa in the lunch room and chose not to answer the phone; I was very, very angry” (S8).
Registered nurses needed to perform check-ups or controls on patients by themselves. Some nurses reported that they supported each other, working as a team.
“We were a small, bonded group, not really having time to give it all; it was usually that care was very time-pressured” (S8).
Domain 3
Experiencing leadership during the pandemic
The nurses experienced different types of leadership during the pandemic. They had to deal with the fact that rules and regulations changed frequently, sometimes daily. In the early phase of the pandemic, nurses reported that the leaders focused on rules and regulations rather than attentive leadership. How the leaders communicated the changes differed, and nurses described that the leadership changed over time. Some leaders were creative and understanding, and they co-operated with the nurses throughout the pandemic. The subthemes related to this domain were as follows: lacking solution-oriented and attentive leadership; awareness of lack of competence in PC; and being guided by caring, active, and creative leaders.
Subtheme: Lack of solution-oriented and attentive leadership
The pandemic caused major challenges for the organization in that the leaders were not prepared to deal with, for example, the daily testing of patients and staff.
“We had to test staff and patients, so a lot of my working hours were spent on that...testing every day” (N18).
The leaders and staff had to deal with new recommendations and instructions before each shift, and especially in the “first wave”, the nurses found that the leaders were stressed and did not have time to inform them about what was going on. The nurses wished that the leaders had communicated the situation to them; they explained that the leaders faced a chaotic situation in solving acute problems, and although they were absent from the ward, they were available for talks. ‘One nurse reported that leaders would make statements such as:’
“Now we need to withdraw a bit now because it’s too rocky at the hospital, but we’re here, come to us if there’s anything” (S1).
The interpretation of routines and guidelines and arbitrary interpretations of recommendations from the leaders differed and caused tension among the nurses.
“There were a lot of abrupt swings back and forth…‘Now we do this and now we do that’…new directives every time; the Public Health Agency of Sweden also fumbled” (S5).
Leaders were busy organizing care by relocating and recruiting staff, and they did not understand that the working environment was negatively affected or that the nurses did not support the type of care they provided during the pandemic. Nurses are used to relieving patients’ suffering, providing support, and being present; during the pandemic, the focus was on other things, and the care was not dignified. The nurses did their best and put their rights aside, and they did everything to do a good job and make a difference. However, one nurse reported:
“The personal sacrifices happened often, such as not [having] the ability to eat one’s meals, get breaks and toilet visits; it did not feel okay” (S6).
As the pandemic continued, new challenges arose. The nurses had to work double shifts and schedule changes at short notice, and information was provided through text messages and phone calls. The leaders could not protect the nurses’ free time, and the very tired nurses eventually made mistakes, not because they were incompetent but because the organization had major shortcomings. The nurses gave examples of illness among colleagues, like post-traumatic stress disorder (PTSD) symptoms, physical reactions, increased heart rate, and signs of panic in the eyes.
The nurses expressed the need for professional support after the pandemic:
“There are many staff members who need counseling after the pandemic!” (S1).
The nurses believed that a well-functioning organization and leadership would have caught the symptoms and offered debriefing. In addition, it would not have transferred a heavy responsibility to the employees, giving them a bad conscience and making them feel inadequate. The nurses expressed that the leaders should have cared more about them—more than just giving them sweets now and then.
Subtheme: Awareness of lack of competence in PC
Nurses from other units and different specialties worked together during the pandemic because of relocation; not everybody knew each other, and nurses without knowledge and important experience in PC had to care for patients at the end-of-life. All the benefits of working as a team, which characterize PC, disappeared.
“You did the most important thing, then the other things had to be because of shortage of staff” (N19)
Active treatment and curative intent were given until the patient died, and palliative symptom control was not carried out even though the nurses described that they “had to work right up to the end” (S6). None of the professionals asked: “What can we do, what should we do?” (S7)
The nurses faced difficulty in deciding on the point at which curative care should change to PC. The nurses expressed their gratitude for excellence in different areas of medicine and asked for support in the field of PC. One nurse reflected:
“There are fantastic doctors; there are infection rounds, X-ray rounds; why can’t we have palliative care rounds?” (S8)
The shortage of specialists in palliative medicine led to a situation in which nurses with specialization in PC had the highest level of competence, something the local management did not understand or take seriously. The nurses felt that the management did not listen to them; they became sad and stressed when they could not perform person-centered PC, such as carrying out prescribed ordinations, including taking blood samples, inserting needles, or giving antibiotics to dying patients. They tried to follow the doctors’ orders, but they quickly told the doctors that it was not possible, as the patients did not want to accept the treatments. At the beginning of the pandemic, the nurses did not know how to handle such situations, but this improved with time.
Subtheme: Being guided by active, creative, and understanding leaders
The nurses described that creative and understanding leaders of a unit listen to the nurses, showing care and support when needed. The nurses’ abilities, responsiveness, and cooperation with colleagues to inform and develop routines and guidelines made the team intertwined. They reported that relying on leaders was the only way to cope with the daily changes in roles and regulations.
“I have to relate to what my leader is saying. Today it is true” (N1).
The nurses appreciated when leaders acted and supported them immediately when needed, such as when the leaders took responsibility, added extra staff when the workload increased, and provided clear information to the staff. This made the nurses feel that it was an educational period in their working life. The nurses reported that a sense of security was important in a group of many nurses. Some leaders organized whiteboards for the staff to write questions about things that were important during the pandemic, such as “what material we need, what we wanted to change, visors, face masks, aprons, gloves on trolleys outside the room” (S3).
The nurses reported that the leaders took them seriously in that they kept them informed. Many nurses reported being kept informed by leaders, and they gave various examples of leaders’ activities, such as digital meetings in teams and the frequent use of e-mail and group meetings to plan and inform. They received constructive feedback from the leaders, and this provided a sense of security even when it only was a quick fix. Leaders and nurses who cooperated during the pandemic created better routines and were aware that not everything could be solved; they also wanted to retain some of the advantageous routines that the pandemic produced.
“When it was stricter, everything was quieter in the ward. For us too, we had it... there wasn’t so much to do at once. It was actually quite good, we all thought so, our head of the ward wants us to continue with visiting hours after the pandemic so that we have fixed visiting hours for next-of-kin morning and evening, so we have them then, and we can answer all questions and such, instead of all day and night, because we were interrupted so much in the things we were doing. So, it’s something we really want to continue with” (N4).
Active leaders acknowledged absent nurses. One of the nurses described that the leader saw her even when she became ill. The nurse said: “my leader called me at home and asked how I was doing” (S3). Another nurse said that her leader contacted her before she went back to work. Other leaders also facilitated contact with occupational health services or psychological support.
