Ten themes and a number of subthemes have emerged from the data analysis of the participants’ narratives. Most findings were recurring. However, our data analysis attempted to shed light on the nuances of the participants’ perceptions. Dying in isolation emerged as an extremely inhuman experience that critically ill covid patients and their loved ones had to go through. Burying your loved one unclothed without saying a goodbye emerged as an unprecedented inhuman situation. Patients and family members were reported to have expressed very strong desire to communicate and interact with each other. Five reasons of strict visitation restrictions were identified in this research, related to epidemiology, fear of liability, fear of hindering the performance of nursing duties, fear of visitor collapsing because of wearing the protective clothing, and the fact that protective clothing is intended to be used by healthcare staff only. All participants held that visitations should be allowed on an individual basis, and remote communication technology should be available to any covid patient. It is to be noted that physicians’ and nursing practitioners’ discretion and goodwill can significantly mitigate the problem of dying alone. This was a most striking finding. Importantly, many participants suggested that in some COVID-19 health care settings visitations were allowed at physicians’ de facto discretion. These “clandestine” visitations were mentioned as practices that existed in reality, even though they were not officially recognized by the Greek rules. Furthermore, the quality of nursing care shifts towards a broader definition. Nursing practitioners have shown high levels of empathy (towards both patients and their loved ones) and strong willingness to provide holistic (bio-psycho-social) nursing care to their patients. In that regard, they were experiencing very heigh levels of moral and psychological distress mainly due to secondary posttraumatic stress. Besides, participants reported having feelings of inferiority. It is to be highlighted that some factors related to political neglect were mentioned as major factors that enlarge the problem of dying alone due to COVID-19 in Greece. As such, lack of workforce, further compounded by the fact that many skilled but unvaccinated healthcare providers were put out of the job by law, against a background of overwhelming workload due to increasing influx of covid patients, were mentioned as major factors that make the problem of dying in isolation from COVID-19 in Greece bigger compared to other countries. Finally, and most importantly, shift towards a less patient-centered model of care was emerged from the data analysis.
The findings reinforce the existing literature on many fronts. However, we identified some nuances that are of great importance in planning tailored interventions to mitigate the patients, family or health providers problems related to dying in isolation from COVID-19, and most importantly, hold down the commonly accepted patient-centered model of care. The findings of this study might inform strategies to promote organizational support in order to enhance nursing practitioners’ personal resilience and ability to meet the emotional needs of their covid patients within a stressful environment without experiencing moral distress, psychological distress and compassion fatigue.
More precisely, from the thematic data analysis emerged a number of themes and subthemes presented below.
Dying in isolation was an extremely inhuman experience that patients and their loved ones had to go through
The agony of being critically ill with COVID-19
All participants emphasized that dying or nearing death in isolation due to the particular conditions of the COVID-19 pandemic is an unprecedented inhuman, unbearable and devastating experience. It is far from being consistent with what is called “good death”. However, they regarded this situation as fully expected under the particular circumstances in which COVID-19 patients are hospitalized. The participant P14 highlighted repeatedly that dying alone, with family members not being allowed to say a goodbye before, during and after death, is an “extremely undignified situation”. Participants said repeatedly it is “extremely inhuman” (i.e. P7) or the “absolute horror” (P1, P5). The participant P9 said, “COVID-19 disease is the disease of loneliness…”.
The participant P11 declared that nursing practitioners encounter great difficulty (due to psychological distress) in taking care of covid patients who are dying in isolation. The following quotation from her interview is indicative of the situation:
It was the hardest part of caring for patients [with COVID-19] nearing the end of life. Letting a human being die alone, under these conditions…Neither work, nor fatigue, or danger, or anything else is so hard to deal with…
In a similar vein, the Participant P5 said,
…[caring for COVID-19 patients dying alone] is the most difficult [painful] part of caring for COVID-19 patients…it is worse than the [COVID-10] disease itself!!….
Besides, the participant P11 said that dying or nearing death in isolation is a soul-destroying situation and the most difficult part of caring for covid patients.
The following quotations are indicative of what terrible experience does a hospitalized covid patient who is dying or nearing death in isolation go through:
…it's very soul-destroying for patients… it is like to be going to be executed by a firing squad…
…they have experienced so much loneliness!... I wonder how they did manage to avoid going crazy… (Participant P14).
I think you can go crazy there [in a covid ward or ICU] due to loneliness, anxiety and solitary confinement. You literally can lose your mind… (Participant P3).
Patients were reported as experiencing psychological distress, which was characterized by strong fear of death and loneliness. Patients who are staying in a COVID-19 ward are in an unknown (P7), and repulsive environment (P1) with monotonous sounds [beeping of monitors] (P1), where patients are constantly looking at the sky. Patients are coping with the terrible feelings of being isolated from others and being totally dependent on others (P7), at the same time. They were having infrequent and short interactions with “space-dressed” health providers in a quasi-depersonalized environment (P9). Besides, they were experiencing intense physical distress at the same time (i.e. feeling of dyspnea).
Participants stressed that every covid patient room should be equipped with TV in order to animate covid patients (P3, P4, P5, P15), given that family members are currently not allowed to rent a TV for their loved ones because of the particular circumstances of the COVID-19 pandemic (P4).
Participants stressed that when they were providing routine nursing care they observed that patients’ eyes offered a most powerful expression of strong fear of death. Two participants (P4, P5) observed that COVID-19 patients’ fear of death was heightened before they were intubated. Participants said that covid patients (P4, P5) and family members (P6) were informed by TV channels that intubation is often a last effort to stave off death and it is most likely to cause death for the patient.
Ultimately, participants’ opinions were divided on the association between patient’s age and fear of death. The greater number of participants were of the opinion that younger patients express greater fear of death. The participants took the view that while younger patients were afraid of leaving many things behind, older patients felt that their life cycle was going to be closed (i.e. P3, P6, P11). Many participants said that there was no association between patient age and fear of death (P2, P7, P8, P12, P13, P14), with some participants considering that older patients were expressing greater fear of death than younger patients who “feel invincible” (i.e. P5, P9).
Covid patients’ and family’s strong desire to see each other and get together
This was a main and recurring theme that emerged the data analysis. The participant P14 described in a representative manner this desire. The following long quotation is indicative of the situation and deserves to be mentioned:
[The patients] were feeling helpless, so lonely and anxious…There were patients struggling to get up from the unit bed in order to jump through the hospital window and meet their loved ones. Outside [the covid ward], a patient’s son was crying his heart out, and said, “I’m losing my mother.” He was begging us to see her, just to tell her a two-word phrase never said before: “I love you”. The mother was pleading with us but we had to say no… That’s how we did end up here… Outside [the covid ward], souls were torn to pieces… however, inside, we could keep performing our duties.
All participants said that critically ill covid patients had a great need for seeing their loved ones in person. The following quotation is representative to illustrate this point:
The [covid] patients’ desire to talk to a loved one was so strong that…what can I say? …they have experienced so much loneliness!... I wonder how they did manage to avoid going crazy… (Participant P14).
Participants said that immediately after extubation patients felt the strong urge to see and interact with their loved ones (P7). It was mentioned that a message from their loved ones was enough to make patients open their eyes and have bright eyes (P3).
Importantly, one participant (P13) emphasized that the need for in-person interaction between COVID-19 patients and family members is generally strongest in Greece due to the fact that there are still very strong family bonds in the Greek society.
Finally, and most importantly, the participant P5 highlighted a lack of peoples’ trust in their loved ones’ health care providers in Greece. This makes the family members’ desire to be near their hospitalized loved ones much stronger. The participant put it best in saying,
In Greece we are used to want our relatives in the hospital… it is not ordinary in our culture to handover our patient to physicians and nurses… they do not trust us as we do not trust them…
Relatives’ and friends’ desire
This recurring finding emerged from participants’ narratives. The patient’s relatives were reported to experience strong negative emotions and especially to be distressed by the lack of contact and interaction with their loved ones. The following quotation describes terrible and unhuman scenes and is representative to illustrate this point:
[… The relatives were experiencing it] … as condemnation. They were mourning before death. They were feeling helpless. They were irritated…it is reasonable. To feel despair because you could not see a loved one and say a final goodbye. Patients leave alone. Patients spend their final moments alone, without their loved ones, with their children being a few meters away from the hospital. Indeed, condemnation! This will haunt them [the relatives] forever… (Participant P14).
In a similar vein, the following quote is indicative of the situation and deserves to be mentioned. The participant P7 described a terrible and unhuman scene. She said,
[A patient’s daughter said,] Ι plead with you…I want to go in [the patient room] to see my mother, I want to say her goodbye…and she was crying…crying… she said, “I will do a covid test”, “I will get dressed up in the protective suit”… “I beg you to let me see her”… “only to see her” …and then…when the patient died, she went crazy and he was absolutely right.
Furthermore, the participants P4 and P8 said,
The relatives want to see their loved ones, even from a distance, at least for a little bit of time…
The relatives preferred to stay near their loved ones’ patient rooms even though they knew that they had no chance of entering the patient rooms. Some of them were experiencing “silent pain” (P1). It depends on their character, they were shown to be understanding (P1):
We also told them, it makes no sense staying here, physicians will inform you at some point, It would be better for you to go home and get some rest. However, they were in denial of reality…they were staying over here and this … did not make any sense because they would never enter [patient rooms]… (Participant P7).
Some relatives were begging to get into…however… but when they realized that they did not have a chance to enter, regardless of how much they had begged, then, they were simply experiencing their distress in silence… but… do you know how much powerful scream is that silence? These looks are unforgettable… (Participant P14).
Guilt sensitivity seemed to cause patients’ family members and friends to be vigilant and sensitive to ways in which inactions could potentially cause patients to feel abandoned. The following quotation is representative to illustrate this point.
The relatives were crying and telling us that they could not provide much needed support and aid to their loved ones… They were asking us to do our utmost, to be substituting for them while they could not enter in patient rooms…… and we did as much as we could. we tried to be substituting for the [ relatives]. They were asking us if they might do something to help their loved ones, even by bringing small things for them such as baby wipes… They were asking us to convey their regards and a message to their loved ones … by saying that they [patients] are not abandoned… at any rate, the fact that they could not offer any help might make them feel guilty for the rest of their lives … (Participant P4).
Moreover, the strong religious sentiments of the Greek population might increase family members’ risk of suffering negative emotions caused by the fact that their dying loved ones were barred from receiving communion because of being in isolation:
In the past [before COVID-19] relatives often said, “we do not mind if he does not understand, we would like the priest to put at least one drop of Holly Communion in patient’s mouth…it doesn’t matter if he is intubated… (Participant P2).
Burying your loved one unclothed without saying a goodbye is an unprecedented inhuman situation
This recurring finding emerged from participants’ narratives. The following long quotation describes heartbreaking situations and is representative to illustrate this point:
Naked bodies, in a tragic condition, in big war bags. That was all it was? Is that the last salutation? Is there a right to have their dignity respected? Do we have some respect for the dead? This was all it was? This is leaving this world behind in a decent way...? Leaving behind a world in which he [the deceased] has been living and offering. The last greeting should be allowed to relieve the person who is left behind from dealing with psychological distress and suffering forever. We could dress them [the deceased bodies] up, cleanse them, groom their head, so as to leave with dignity. Yes, I know it. There is no time… but we have always had, and we should always have time for a deceased human body… what can I say... we need additional staff members so as to have enough time to provide holistic care to these [critically ill] patients I have been trying to protest about it [these circumstances] … No answer! The only thing I hear all the time is “the virus is spreading fastest” … (Participant P14).
Proper and dignified management of the deceased body was reported as an effective facilitator of a humanitarian response to the death of a covid patient within the difficult COVID-19 pandemic circumstances.
…we said, a human being is leaving. We were making the sign of Cross, we were putting clean sheets on him and then we were putting him in the bag…(Participant P7).
every human is unique, he has traced a path on the earth and the moment he leaves deserves dignity and respect (Participant P12)
Participants said that not being allowed to say a goodbye after death is extremely “cold” (P3, P10), given that “every single individual was a unique existence of this world in their earthly life that leaves behind...” (P3).
Importantly, the participant P5 put it best in saying,
“…burying the unclothed deceased body of our loved ones is not consistent with our culture”.
Reasons behind strict visitation restrictions
Some significant reasons of prohibiting covid patient room visitations or family members from saying a goodbye to their loved ones’ deceased bodies have emerged from participants’ narratives. Among these reasons were included those related to: a) epidemiology (precautions to prevent spread of COVID-19) (P15), and b) liability fears (i.e. P2, P4):
Some people were telling us “I’ve been sick with covid! … Let me in”. “But if your mother was the patient, then, what would you do?” ... However, if you come in and get infected you will demand accountability of me… (Participant P4).
A family member says you, “I would like to be sure that inside the plastic bag is my mother” … however…if you have contracted covid, who will protect me from being accused of having harmed you? (Participant P2).
In addition, a third reason emerged from our data analysis was c) preventing hindering the performance of nursing duties. Two participants argued that the presence of family members in patient rooms and wards might hinder the daily performance of their nursing duties. (P13, P15). Note, however, that at the same time the participants P13 and P15 underscored the positive consequences of family presence at the bedside. The participant P13 said that family members near the patient’s bed can lighten the nursing practitioners’ workload and prevent them from bearing in their mind tragic images related to “inhuman” scenes with relatives grieving and begging for a brief hospital visit. In a similar vein, the participant P15 said that family members near the patient’s bed could relieve nursing practitioners of their duties to provide holistic care for their critically ill covid patients.
Furthermore, the following emerged as one more reason of preventing patients’ relatives from visiting their loved ones. d) The participant P2 expressed concerns as to whether some visitors should be allowed to enter the patient rooms for fear of fainting because of wearing the protective clothing. Moreover, the following has emerged as one more reason of prohibiting visitations: e) Participants argued that allowing one family member to enter the patient room would press healthcare providers to give more family members the permission to visit their hospitalized loved one (P2, P4, P5, P6). Importantly, this reason of strict visitation restrictions has been highlighted by a number of nursing practitioners who know well the context of practicing nursing in Greece. Moreover, e) one participant (P4) said that the protective equipment such as protective clothing is intended to be used by healthcare staff only. This was regarded as one more reason behind enforcing strict no-visitor rules.
The background of overwhelming workload due to increasing influx of covid patients and lack of workforce, further compounded by the fact that many skilled but unvaccinated healthcare providers were put out of the job by law, made the aforementioned reasons more significant. This finding has emerged from our qualitative data analysis. Many participants were of the opinion that better organizational strategies should be developed to address the aforementioned reasons even in light of the current circumstances due to the COVID-19 pandemic.
Visitations should be allowed on an individual basis
Many participants expressed the opinion that hospitals should have the discretion to allow visitations on an individual basis. This came up as a recurring finding. Most participants clearly asserted that enforcing strict and unexceptional visitation restrictions is the cause of inhuman conditions and is completely unacceptable. Dying alone without saying goodbye (before, during and after death) was referred to as unprecedented inhuman situation for both patients and family. Participants emphasized that dying with someone present would be consistent with the principles of “patient-centered care”.
Most participants wondered why in extreme and existential situations family members could not enter patient rooms under the necessary protective measures just like the hospital staff does. The following quotations are representative to illustrate this point:
In the beginning I was so angry... I was stressed out! I was trying to understand why this was happening…I was trying to change it…The intensive care unit is a place where you can easily exercise surveillance… we [healthcare providers] do not live in isolation…however, we enter patient rooms …We take precautions when we enter…. Maybe it will be the same case with visitors…After all …. Depression! … I relinquished trying…because feelings are lacking…goodwill and benevolence are lacking…. (Participant P14).
Why do we can get dressed up and enter? Do we live in isolation?... [Relatives] could dressed up and enter in… but with proper guidance on how to get dressed up and how to get undressed… (Participant P1).
I find it totally unacceptable that we do not allow close relatives in for two minutes, at least when the patient is intubated; most of them end up dying (Participant P12).
…it is distressing and sorrowful the fact that family members cannot say a goodbye before the patient get intubated (Participant P9).
Notwithstanding, participants (P4, P6, P12) stressed that in some cases the encounter can be extremely harmful to a critically ill patient with low oxygen saturation, because of the strong emotional reaction that can it cause to the patient.
The following quotation is indicative of the situation for particular patient groups.
One patient, after a loved one has had visited him, was crying a lot… all night (Participant P4).
Moreover, it is to be highlighted that getting dressed in protective clothing upon entry covid patient rooms is a difficult skill for family members to learn and requires the assistance of specially trained nursing staff. Such a staffing shortage means visitors cannot be allowed entry. This was mentioned in the interviews as a reason why family members cannot be allowed in covid patient rooms, in addition to the previously mentioned reasons (P4).
Ultimately, it is noteworthy that all participants agreed on the urgent need for additional staff and improved organization to facilitate the in-person encounters or remote interactions between covid patients and relatives.
Remote communication technology should be available to any covid patient
\All participants underscored the value of effective patient-family remote communication. They said loudly and clearly that the health care system should guarantee that the patient will have an opportunity to effectively communicate with their loved ones at least right before the patient is intubated (P12). The following quotation is representative to illustrate this point:
Technology is very important for achieving effective remote communication… it s a consolation for the relatives to see their loved ones opening and closing their eyes, to show signs of being alive… (Participant P2).
The quotation “The relatives want to see their loved ones, even from a distance, at least for a little bit of time…” (Participant P4 in line with the Participant P8) highlights the importance of the use of effective remote communication technology.
Ideal remote communication between patients and their loved ones requires both technical equipment and available trained personnel. For instance, hospitals should have enough tablets and/or iPads to go around. Or at least a landline fix or wireless telephone should be accessible to all patients hospitalized in a shared room. However, participants appeared to realize that it is true that it is not easy to find a sponsor for adequate remote communication equipment in the hospitals throughout the country. Given that the number of hospital beds in the covid patient rooms has been increased and the covid patients suffer from severe disability and muscle weakness, the number of the already existing fixed telephones in the hospital rooms cannot address the remote communication needs of covid patients (P12, P15). Moreover, they emphasized the need for healthcare settings to be adequately staffed by frontline nursing practitioners to secure ideal remote communication between patients and family (P10). Nevertheless, it is necessary to be highlighted that almost all participants placed much greater emphasis on the need for in-person contact between patients and family before death (at least right before the patient is intubated), during the dying process and after death.
Physicians’ and nursing practitioners’ discretion and benevolent goodwill can mitigate the problem of dying alone
“Clandestine” visitations were allowed at physicians’ discretion
Participants mentioned that in some COVID-19 wards physicians had a definitive underhand say on permitting or prohibiting visitations. Physicians’ de facto discretion to allow visitations on an individual basis was a recurring finding that emerged from participants’ narratives. These visitations were mentioned as practices that existed in reality, even though they were not officially recognized by the Greek rules. Importantly, the participant P14 said that higher-social-status individuals or individuals being in relationships with people who occupy high places and status in society were often given a clear opportunity to pay a casual visit to their loved ones. In the same vein, the participant P13 suggested that patients might be frequently visited by their loved ones at the physician’s discretion. Family members could drop by their hospitalized loved ones at physicians’ discretion. At the same time, participants were obliged (with a broken heart) to prohibit “children of a lesser God” (P14) from entering the patient rooms for a few minutes despite the fact that their loved ones were dying! Nevertheless, physicians that permit relatives to pay causal visits to their loved ones might be motivated by compassion and goodwill (benevolent interest).
The following quotations αρε representative to illustrate this point:
Ok…in special cases, relatives might have been given special permission to visit their critically ill loved one (Participant P1).
In a similar vein, the Participant P13 implied that family members were allowed to drop by their hospitalized loved ones. The participant repeatedly said that physicians were managing to fix the problem and highlighted that in her workplace the patients’ relatives were gentle, tolerant and condescending.
If someone was in great need [to see the hospitalized oved one], the issue was handled by physicians… such events were occurring frequently… relatives were allowed to drop by their critically ill loved ones (Participant P13),
Other participants said,
I think that sometimes physicians (who were the deciders on such issues) are more tolerant of letting someone [see their loved one who is hospitalized] if he or she was constantly and intensely begging for visiting the patient (Participant P4).
Σε κάποιες τραγικές περιπτώσεις όπου είναι για να φύγει ο ασθενής, αφήνουν να τον δει [ο πολύ στενός συγγενής] και να τον αποχαιρετίσει (Participant P15).
Some doctors allowed relatives enter covid patient rooms in secret; this is forbidden… and if something went wrong while or due to the particular visit physicians might be in trouble. Nevertheless, some physicians allow patients’ close relatives to enter in our covid ward (Participant P12).
In some tragic cases where the patient was about to die, they [the physicians] were allowing very close relatives to see the patient and say a final goodbye (Participant P15).
Mitigating the problem of dying in isolation was at physicians’ discretion
Physicians’ discretion and benevolent goodwill emerged as factors playing a pivotal role in mitigating some of the effects of strict visitation restriction. It was emerged from our data analysis that in addition to the physicians’ de facto discretion to allow family members to enter covid patient hospital rooms (on an individual basis), it was up to their discretion as an act of benevolent goodwill a) to offer more or less support to those covid patients who are unable to make the best use of remote communication technology, and b) to spend more or less time with their patients (in the patient rooms) or spend more or less time on informing family members of their loved one’s condition, thereby contributing to lessen the negative effects of strict no-visitor rules on both patients and family members. The effective use of remote communication technology was at the discretion of the health care settings (P4), nursing practitioners (P9, P13.P14) and physicians (P1, P7). The following quotations are representative of the aforementioned findings:
It was up to physicians΄ discretion and generosity… (Participant P4).
Each hospital had its own guidelines. I told you what we were doing with tablets but in other hospitals this was not happening… [in our ward] the physicians were entering in [in the patients' wards] frequently, they transferred information from relatives to patients…. [And] they were helping them [the patients] to make use of remote communication technology… (Participant P2)
The physicians were constantly dressed up, 24 hours a day… (Participant P11).
We were fighting in there - and you know, the respiratory patients are difficult – alone, without any physician in patient rooms…. They were staying in [patient rooms] no more than an hour a day… (Participant P7).
As mentioned below, a fear of being contaminated or contracting COVID-19, or even of transmission of the disease to the family members or colleagues was deeply embedded in some participants (P4,P5,P7). Given the truth of the assumption that the same holds true for physicians, this fear might cause them to be unwilling to spend a lot of time in the covid patient rooms.
Providing adequate information to patient’s relatives can serve as a distress relief and put them at ease (P4, P9). However, participants said that providing information was far from being an easy task in light of the current circumstances due to the COVID-19 pandemic. Physicians may have no time to inform relatives because of overwhelming workload. Besides, physicians may be reluctant to provide adequate information about patient’s condition because of the fact that a covid patient may get worse very quickly in an unforeseen way:
Ο γιατρός καιγόταν δεν µπορούσε να τους ενηµερώσει και θα τους ενηµέρωνε τηλεφωνικά κάποια στιγµή της µέρα. (Participant P7).
The physicians were so busy that they could not inform them [the relatives]… they could do it via phone, at a particular time of a day. (Participant P7).
When physicians are on shift work and has to deal with a lot of people, they are dressed up, they cannot provide information to relatives … besides, physicians are reluctant to provide adequate information because of the fact that the patient's condition can change quickly [for the worse] and the relatives [who do not see their loved one] cannot understand it… (Participant P10).
Other participants said that relatives might be given information about their loved one’s current health status at physicians’ discretion as an act of benevolent goodwill:
This [providing information] is at the discretion of each physician and in his sensitivity, and the time he wants to spend on this piece. (Participant P1).
… [In our department] the physicians were providing full information [to relatives] (Participant P2).
…we were providing information [to relatives] 24 hours a day (Participant P13).
Mitigating the problem of dying alone is at nursing practitioners’ discretion
Nursing practitioners’ discretion and benevolent goodwill emerged as factors playing a pivotal role in mitigating some of the effects of strict visitation restriction. In this perspective, nursing practitioners could facilitate the use of remote communication technology. All participants highlighted the role of remote communication technology in reducing loneliness in hospitalized covid patients and psychological distress in family members. Participants said that they were facilitating the use of remote communication technology at their discretion (voluntarily, as a gesture of goodwill), especially for the sake of patients who are unable to make use of it, to mitigate the negative consequences of the strict no-visit rules. The effective use of remote communication technology was at the discretion of the health care settings (P4), nursing practitioners (P9, P13.P14) and physicians (P1, P7).
At any rate, while all participants were willing to help patients use remote communication technology, nursing practitioners’ discretion and benevolent goodwill was of key importance for providing more or less substantial support. For instance, while the participant P11 said she often put a phone to the patient’s ear, she never brought her own phone inτο a covid patient room. In contrary, the participant P12 said she brought her own phone in a patient room, enveloped with celluloid. The following comments indicated that the use of remote communication technology could be carried out at nursing practitioners’ discretion as an act of benevolent goodwill.
We were entering patient room for the sole purpose of helping them [patients] to make use of their mobile phones…perhaps smartphones… in order to communicate with their relatives…sometimes it was necessary to call from our own mobile phone… (Participant P13).
… there was so great need [for patients] to talk to their loved ones… so great ... What more can I say? ...They had experienced high levels of psychological distress due to loneliness … I do not know… I do not know how they managed to deal with loneliness…how they managed to not go crazy…Yes, of course, it [providing assistance and support to patients make use of remote communication technology] should always happen… however, whether it happens or not is at our [health professionals’] discretion and benevolent willingness … I hope you do understand… (Participant P14).
Note, however, that the participant P10 mentioned that a nursing practitioner in her workplace had been said,
… I'm dressed up [in the special protective suit] for a long time [and that makes me feel uncomfortable], I'm sweating…[so]….I have no time to open the camera
Furthermore, the following quotation of the participant P13 was representative to indicate that nursing practitioners were making every effort to find alternative options to help patients and relatives. The participant said,
We are trying different things to alleviate their pain [relatives’ and patients’ due to the ban on family visits to covid patients]…
Participants said that in addition to using remote communication tools they were trying (at their discretion) various strategies to mitigate the negative consequences of the strict no-visit rules, such as a) hospitalizing more patients (especially patient that are relatives or around the same age) in shared hospital rooms to enjoy the company and mitigate the isolation (P9, P13), taking measures to protect their privacy and dignity, b) being more hours near the patients, c) serving as mediators between patients and their family members, or even d) letting family members off the hook when they take a sneak peek at their hospitalized loved ones, especially when the hospital’s spatial setup makes it easy.
Patients were in great need for successful human interaction with health providers. Most participants were willing (as a gesture of benevolent goodwill) to offer holistic support to critically ill COVID-19 patients (as presented below). Note, however, that they had every right to say that they felt constrained in spending time to provide holistic care, mainly because of overwhelming workload and staff shortages. At any rate, it should be kept in mind that a fear of being contaminated or contracting COVID-19 as well as a fear of transmission of the disease to the family members or colleagues was deeply embedded in some participants, a fear that was also expressed explicitly (Participants P1, P4. P5 and P7). This fear might cause nursing practitioners to be unwilling to spend a lot of time in the covid patient rooms.
Moreover, some nursing practitioners confessed that they made use of their de facto discretionary power to perform a proper and dignified management of the deceased body. The participant P10 admitted that she acted in more respectful for the deceased body way.
I decided to dress them up… for that purpose, I was asking for an orderly’s help… I did not want them to go naked in a bag… I didn΄t want…
In a similar vein, the participant P11 admitted,
It has happened to delay the process of deceased body management up to have the covid test results [namely, to be tested negative for covid], so that the funeral can take place without special prohibitions.
These practices were mentioned as practices that existed in reality, even though they were not officially recognized by the Greek rules.
The quality of nursing care shifts towards a broader definition
During the COVID-19 pandemic there has been a shift towards a broader definition of hospital nursing care (i.e. P4). This emerged from our data analysis. Many participants highlighted the importance of involving themselves in providing holistic (multidimensional / bio-psycho-social) nursing care, aiming to address the needs of dying patients and families for psychological and spiritual support. They were willing to spend as much time as possible with patents. They intended to hold patient’s hand, have a proper verbal and nonverbal communication with them, provide psychological support and play the role of the relative or even the confessor.
Many participants said that empathy-driven provision of holistic nursing care might negatively affect their routine work (basic nursing) because of spending time on a time-consuming task, which however they could not afford to do, given the shortage of nursing personnel. The participant P12 complained that she had no time to cleanse the patient’s body. The participants P7 and P9 said that they tried many times to spend time in the patient room holding the patients’ hands. As a consequence, however, the other patients were left without being provided with timely and proper nursing care. Note, however, that the participant P2 said,
I want to provide psychological support… but I cannot…I’m forced to set priorities…I do my best so that the patient can survive, as well as the patient next to him …once he gets out of the hospital alive, after discharge from the hospital he can undergo psychotherapy…
More particularly, many participants made great (empathy-driven) efforts, on a basis of benevolent goodwill, to stay more time near the patients in order to make the use of remote communication technology easier for them (sometimes using their own iPads) or provide to covid patients holistic (bio-psych-social) support. Furthermore, many participants said that they were playing the role of a psychologist (P5, P6, P9, P10, P11, P15) or the role of a confessor who provides spiritual support (P5). They felt obliged to facilitate conversations about patients’ needs and wishes. At any rate, they attempted to play the role of family members (P5, P7, P15). Note, however, that nursing practitioners can feel the patient, but not to the extent of feeling like a family member (P8, P15).
The following are typical comments that reflect recurring findings indicative of participants’ strong desire to provide holistic and personalized care for critically ill covid patients.
Nursing responsibilities include, but are not limited to, performing basic nursing care… and then go home… this would be inhuman… you [a nursing practitioner] have to go deeper into patient’s inner world to meet his needs as much as you can… Humans are not only body, but they are also soul and mind… You have to play the role of a relative or a confessor…at the same time you want to take off the protective suit that makes you feel uncomfortable, and get out of the patient room because you are afraid of the virus .. However, you stay there because your services are so humanitarian…At any rate, however, it is so difficult that you are gradually building up a warm relationship with your patient! … ” (Participant P5).
It is not enough to say two words…you must do psychological support, but there is no time (Participant P15).
Nursing practitioners want to help, to give consolation, but the time is too short… the workload is overwhelming…the length of stay in hospital has been considerably increased…besides, there is a striking lack of healthcare workforce…(Participant P2).
Even in case of emergency, we cannot get into the patient's ward quickly, we must get dressed up following a strict dress procedure… besides, we cannot stay long inside [the ward]… we need staff… (Participant P4).
Now[under pandemic circumstances] you [a nursing practitioner] can only do the things necessary to provide basic nursing care, nothing else. This is due to the lack of staff, not the psychological state (Participant P12).
You [a nursing practitioner] cannot provide holistic care… cannot spend more time speaking with a patient … there is no time… importantly, there is no staff! … I do not know if anyone cares about this … (Participant P14).
The participant P6 highlighted the value of achieving effective nonverbal communication in providing holistic and personalized care and said,
…While performing routine nursing care, body language plays a crucial role in the interaction between patient and nursing practitioner. The way you [a nursing practitioner] enters a patient room…talk to the patient…look at him…touch him… Everything has a role to play [in providing holistic nursing care] ...
Many participants insisted loudly and clearly that a psychologist should regularly visit and provide support to COVID-19 patients (P5, P9, P11).
Nursing practitioners experience very heigh levels of moral and psychological distress
This was a recurring theme that emerged from participants’ narratives. It is noteworthy that most participants felt that their empathy-driven psychological distress did not affect their routine work because of resilience and copying mechanisms they have had developed many months after the COVID-19 pandemic began. However, participants said that these mechanisms could not protect themselves from developing empathy-driven psychological distress. Their traumatic lived experiences at workplace negatively affected their psycho-physical state and familial life rather than their work performance.
Secondary posttraumatic stress
Providing nursing care for critically ill COVID-19 patients was reported as a traumatic experience which caused nursing practitioners to feel high levels of psychological distress. The following quotation is representative to illustrate this recurring theme that emerged from participants’ narratives. Witnessing the process of saying goodbye via remote communication technology before the patient get intubated was referred to as a highly stressful event:
This [saying goodbye via remote communication technology] was the most important thing for patients with infaust prognosis who were in need of being intubated in order to be on a ventilator, they were saying goodbye to their loved ones via a video call…in such situations, we were in patient rooms and have been witnessing that event…these were the most tough and sorrowful situations we had to deal with… Of course, these patients were most likely to not survive…(Participant P9).
It was reported as a factor profoundly negatively affecting the nursing practitioners’ mental state and wellbeing (subjective and relational). As they had heightened levels of empathy (see below), participants described strong emotional responses to traumatic situations or events they witnessed as workplace due to the inhuman process of dying in isolation. Participants’ interviews suggested that work-related traumatic scenes which they had been experienced or witnessed at workplace were internalized. The affective color of these internalized situations was extremely unpleasant and caused them to feel mentally and physically sluggish or unhealthy. They described dramatic symptoms such as insomnia, anxiety, depression, anger and nervosity, negatively affecting their well-being:
Whatever you want to or not, it [the stressful event] enters your inner world…I was feeling like I’d lost my smile… I was not in the good mood to do anything…I was feeling like I was a “going to work and coming home from work” machine…I had abandoned everything in search of being able to remain strong enough in my job-related activities. What can I say?... I was feeling down, very down…like I was in a constant state of sadness… (Participant P3).
…irritability, anger, anxiety, psychological pressure, stress, a lot ofstress…(Participant P7).
Not surprisingly, they could not leave it all behind at the end of their shift. Traumatic events that occurred in workplace had serious implications for nursing practitioners’ private life (daily living). They confessed that the trauma stayed with them long after the stressful event:
I did not make it to not take it [these traumatic experiences] home after my shift was finished (Participant P15).
Participants’ constant exposure to significant levels of traumatic stress made it tougher for them to hold down their regular daily living activities. They could not get rid of thoughts, imageries, auditory hallucinations and other posttraumatic symptoms, even while they were sleeping:
I try to leave it all behind… however .., while I was relaxing…I kept hearing in my dreams beeping of patient monitors and asystole alarm sounds waking me up in the middle of the night….” (Participant P 12).
Thought and images were causing me to wake up in the middle of the night…absolute horror…This is such a terrible nightmare…I never felt something so terrible in my entire professional life ... thirty years in the ICUs…but… Who cares for my psyche? (Participant P14).
The resources of nursing practitioners’ psychological distress that emerged from the data analysis can be classified in three categories: a) traumatic experiences due to enforcing strict no-visitor rules, b) lack of time so that nursing practitioners cannot provide adequate holistic care, c) feelings of frustration after exhaustion, c) the fact of dying alone itself, and d) the fact of putting unclothed deceased bodies into military plastic bags, namely, the specific treatment of a deceased body during the coronavirus pandemic. In is to be noted that participants said that inhuman, hard and traumatic situations where grieving patients’ relatives were begging for a brief hospital visit were extremely difficult situations to deal with (P4, P14). Furthermore, one participant’s comment emphasized the value of being successful after having put a great effort. The comment clearly indicated that nursing practitioners feel frustration when they realize that all their efforts were in vain.
When your patient dies after having put great effort into providing psychological support, having been staying for many hours in patent room, you wonder what was the meaning of your effort? ... You can’t get over it… (Participant P9).
The participant P9 said that too much self-reflection was needed to maintain her own emotional stability and ability to continue providing high-quality care for covid patients. In a similar vein, the Participant P7 said,
Look…I was not even in a position to encourage myself…at some point my mind went blank… We have experienced very traumatic events under tragic circumstances…which…will leave an indelible impression in our inner world…
Moral distress I
In addition to psychological distress, participants reported going through experiences that demonstrated moral distress (in the strict sense of the term). All participants felt almost prevented from acting on what they considered that might remedy or mitigate the problem of dying alone. In other words, they felt almost prevented from spending time with patients to provide holistic care or facilitate remote communication between patients and family members, or spending time with family members to support them. Besides, they felt prevented from providing care for deceased bodies.
Lack of time and overwhelming workload, further compounded by a lack of workforce (P2,P3,P4,P5,P6,P7,P9,P12,P10,P14,P15), were sapping their energy needed to provide holistic support for their COVID-19 patients who were dying or nearing death alone. Moreover, the following factors are included among the common causes of participants’ moral distress: inadequate staffing, inadequate remote communication equipment, challenging hierarchies within interprofessional relationships, and duty conflicting with COVID-19 health and safety protocols. These factors are further mentioned elsewhere in this Results section.
Feeling of inferiority
Participants reported feeling required by the ‘inhuman’ health care system to carry out the assigned nursing tasks working like a robot, namely, like a machine-like human.
…providing care just to provide care, because we had to, just to get it over with it… (Participant P7).
They reported feeling treated like an inferior part of the patient’s care team because of hierarchies within interprofessional relationships. The unprecedented circumstances of nursing during the COVID-19 pandemic makes more striking the power imbalance between physicians and nursing practitioners and call for the upgrade of nursing practitioners’ voice as equal members of the therapeutic team. They highlighted the difficulty in shifting the balance of power in favor of the nursing practitioners within a health care system which most clearly shifts the balance of power in favor of the physicians. Note, however, that these are perceptions that can only be partly attributed to nursing practitioners’ inferiority complex. Two objective reasons for these perceptions were emerged from data analysis.
First, physicians mentioned that physicians spend much less time in covid patient rooms.
The participant P7 said,
The physicians were practicing “telemedicine” from outside the patient rooms … ”telemedicine”, you understand? However, we [the nursing practitioners] have been there, in patient rooms, for so many hours a day…the physicians have been in patient rooms for only an hour… however, they wanted everything to be done in just an hour…
Second, they reported feeling prevented from providing holistic nursing care while at the same time their voice was not heard by physicians or other professionals of higher rank.
Furthermore, the participant P7 complaint that nursing practitioners are not treated as equal members of a hospital care team. The participant said they are seen as the operatives of the care team. She was repeatedly emphasizing that the existing health care system seems to cause nursing practitioners to become drones, task-processing, handling, mechanical, with low motivation levels and a lack of humanity. This affects negatively the healthcare service quality provided to patients, support provided to family members and tribute paid to the deceased body. Nursing practitioners are led to consider only numbers. The participants P5 and P11 complained that healthcare policy makers are making decisions without taking into account nursing professional opinions, despite the fact that that nursing practitioners spend a lot of time near the patient and can better than anyone else to contribute to developing health-promoting spatial planning in new opened COVID-19 healthcare wards on ICUs. The participant P11 complained that those with administrative tasks in the public healthcare sector are only interested in numbers [implying that they are technocrats]. They are not taking account of nursing practitioners’ opinions when they are deciding what to do.
The participant P14 said,
We are…What can I tell you? ... We are nothing to them…Since physicians do not take us into account, could we expect that they [policymakers and regulators] would be more than willing to do so?
The participant P11 said,
After all, we [nursing practitioners] are just another number…Quite so, just a number…This is very awful…
Despite the strict visitation restrictions imposed by the law, participants described physicians acting as a facilitator of in-person contact between patients and family in extremely exceptional cases. However, participants themselves and their colleagues could not do something like that. This made them feel inferior to physicians.
Nursing practitioners’ high levels of empathy towards patients and family
All participants said they have had a strong sense of professional responsibility and high levels of empathy towards both covid patients and their loved ones. The circumstances of the COVID-19 pandemic enhanced nursing practitioners’ empathy and strengthened their sense of responsibility and duty. All participants admitted (more or less intensely) that they showed humanity to their patients and relatives. The following quotation is representative to illustrate this point:
OK…we build resilience over time…however, we make every effort to approach our work from a humanitarian standpoint. We do the best, not only for patients, but also for the sake of our soul…of course.… (Participant P1).
Participants showed empathetic attitude and willingness to provide holistic care for critically ill COVID-19 patients (included psychological support) attempting to substitute roles which traditionally were performed by family members in order to address their absence.
As patients’ relatives were constantly expressing a strong and heartbreaking desire to see their hospitalized loved ones, many participants (i.e. P1, P4, P7, P12, P15) expressed strong sympathy for what patients’ relatives were going through:
How can [someone, namely, a relative] process such a negative experience?...It may give rise to frustration and leave mental scar… (Participant P4).
We often put ourselves in relatives’ shoes… therefore, we often justify relatives’ behavior. For instance, relatives may get angry because we did not give food to the patient because of overwhelming workload (Participant P15).
The relative is right to say I took him to hospital on foot and now I take him back in a plastic bag… [the relative] cannot see the course of the patient’s treatment, whose body image can change very quickly as his medical condition worsens… (Participant P12).
In addition, they showed empathy-based willingness to help patient’s loved ones who - according to most participants - had every right to call to obtain up--to-‐date information about the health status of their loved ones, beg for obtaining whatever contact or communication with their loved ones or even just take a look at them. According to most participants family members had every right to have intense negative emotions and reactions (such as anger, intense anxiety and intense grief) that might cause them to behave in forceful and annoying manner that seems to be extraordinary. Family members’ intense psychological distress, nervosity and grief before death (P14) were due to the lack of their adequate communication and in-person contact with their loved ones before, during or after death. Therefore, all participants were of the opinion that family members were most likely to experience severe and prolong psychological distress with unknown long-term consequences. Importantly, all participants placed great emphasis on the fact that according to protocols the unclothed deceased body was put in an hermetically sealed military plastic bag which then was put in an hermetically sealed coffin. This process of putting a deceased body in a plastic bag unclothed was regarded by participants as extremely cruel, inhuman, undignified and disrespectful for both the grieving family members and the deceased body. A participant confessed she had a conscientious objection and put a dead body in the bag dressed up. Almost all participants said that as COVID-19 patients’ symptoms can quickly turn serious whereas family members had no opportunity to follow the course of the disease, their dramatic reactions were completely reasonable. Some participants emphasized their willingness to show respect for a deceased body for reasons of dignity and respect for an individual who came a long way on the earth before dying. Lack of time and workforce were mentioned as the main reasons for being prevented from providing holistic care for the patient before, during and after death, and for family members as well. Participants felt that they and their colleagues were doing the best they could in light of the particular and unprecedented circumstances due to the COVID-19 pandemic.
Participants clearly suggested that the unprecedented current pandemic circumstances caused them to put themselves in patients’ shoes. Most participants instantly envisioned themselves and family members in the patient’s place:
We are afraid of a loved one being in the situation and circumstances of the patient…(Participant P1).
…we keep imagining our loved ones being in their [patients’] place (Participant P7).
We [nursing practitioners] have been sick [with COVID-19], too….we have also been in patient’s place, some of our family members have been sick [with COVID-19], we have lost loved ones…I lost my mother…(Participant P6).
I am afraid of me being…I am afraid of dying alone…without my loved ones being present with me…(Participant P4).
Political neglect was reported as a major factor that makes the problem of dying in isolation bigger
Political neglect has been mentioned as an important reason behind the problem of dying in isolation during COVID-19 pandemic in Greece. More specifically, participants repeatedly highlighted the lack of trained healthcare workforce. They said that the pre-existing lack of healthcare workforce due to the recent financial crisis has been enlarged by the fact that many skilled but unvaccinated healthcare providers were put out of the job by law. Participants said that politicians passed the buck for crisis decisions to the unvaccinated citizens and more particularly the unvaccinated healthcare professionals. Furthermore, within our interview data was repeatedly mentioned that the quality of care in the public and more particularly the primary health care sector under increasing influx of covid patients has received less attention in Greece
A shift towards a less patient-centered model of care
Participants were of the opinion that strict and unexceptional visitation restrictions are not in consistency with the patient-centered and empathetic medicine which shows respect for humanity and fundamental human rights. Strict and unexceptional no-visitor rules are extremely inhuman. This was a recurring finding. One participant said that the authorities and other decision-makers adopt a technocratic approach. They make decisions on the basis of “numbers” (namely, numerical data). That is to say they shift the focus away from human values and rights in the medicine.
The participant P7 pointed out that the policy that places considerable emphasis on vaccination campaign rather than strengthening the health care services against the COVID-19 pandemic indicates a shifting away from the patient-centered model of care.
[…in the public health policy] there has been a recent shift from struggling to provide patient-oriented medicine towards passing the buck for crisis decisions to the unvaccinated citizens and more particularly the unvaccinated healthcare professionals, who have been put out of the job by law despite the (already in effect) lack of workforce in the healthcare sector. The authorities pass their responsibility of supporting the provision of patient-centered medicine onto the unvaccinated citizens… (Participant 7)
This shift is indicated by most results of this study. That is to say that in light of the difficult circumstances due to the COVID-19 pandemic the health care system does not maintain a commitment to providing patient-centered care to the greatest extent possible throughout the country. Some participants were of the opinion that the Greek public health authorities have not provided adequately support to the public healthcare sector (P7, P15). Many participants highlighted the lack of workforce (P7,P9,P10,P12,P14, P15). Adopting the patient-centered model of care entails facilitating effective in-person (on an individual basis) or at least effective remote communication between COVID-19 patients and families. Furthermore, adopting the patient-centered model of care would promote the provision of effective psychological support to COVID-19 patients.