Introduction
The COVID-19 pandemic began in 2020 and has caused in excess of 6 million deaths worldwide. As a result, the topic of death and dying is at the forefront of many conversations (Fernandez et al., 2020). Ongoing pandemic conditions have challenged nurses in their provision of effective palliative care. Hospitals began to see a myriad of rapidly changing protocols such as the restriction of visitors for the general population and mandatory social distancing. During this time, many patients have died alone with little or no contact from family members (Mercadante, 2020). This situation has been stressful, and nurses have required increased support (Fernandez et al., 2020). The implications of social isolation for their patients have led nurses to assume the role of caregiver, friend, or family member. This has created dilemmas for nurses struggling to provide care for patients who are dying.
One of the goals of Qatar National Vision 2030 was the establishment of a palliative care unit within the National Center for Cancer Care and Research (NCCCR; Bharani et al., 2018). Within the NCCCR, nurses provide holistic end-of-life care according to the wishes of dying patients and their families. As long as pandemic conditions persist, palliative care nurses will continue to provide critical assistance to aid in the relief of patients with "serious health-related suffering" in all areas of the healthcare environment (Rosa et al., 2020, p. 261). It is important to clarify the experience of nurses as they care for dying patients during this unprecedented period of ongoing social distancing. Thus, the purpose of this study was to explore the experiences of nurses caring for patients in the process of dying during the COVID-19 pandemic.
Methods
Study Design and Data Collection
A qualitative research approach utilizing an interpretive description design was used to explore the experiences of nurses caring for patients in a palliative care unit in the NCCCR during COVID-19. Interpretive description seeks to explore the subjective data of participants to elucidate patterns that may be coalesced into themes (Thorne et al., 2004). This design was well suited for this study because of the need to explore the experiences of these palliative care nurses within their natural context and using their subjective voices during this complex time.
Data were collected between July and August 2020 and consisted of three focus group discussions, guided by five open-ended questions:
1. Describe your experience providing care to dying patients during this time of mandated social distancing.
2. How do you perceive your caregiving as having changed during this time of COVID-19?
3. What has been the impact on your caregiving during social distancing as a nurse while caring for patients in palliative care?
4. What are some of the things that would make you feel better supported in caring for patients during this time?
5. What types of support have you received as a nurse during this time?
Setting
This study took place in a palliative care unit at the NCCCR in Doha, Qatar. Established in 2004, the NCCCR has a capacity of 60 beds, of which 10 are designated specifically for palliative care. All palliative care nurses (n = 22) who had worked in this setting during the COVID-19 pandemic were invited to participate in this research.
Recruitment and Sample
A purposeful sampling technique was used to recruit participants. Potential participants received an email that outlined the research and related details. Three focus group discussions were held, consisting of seven to eight participants each. Focus groups were conducted via a Microsoft team platform and lasted from 1.5 to 2 hours. Inclusion criteria were as follows: (a) able to speak English, (b) provided consent to participate, and (c) have the ability to participate online. The final sample consisted of 22 nurses who had 5-19 years of experience with 1-7 years in palliative care. Eighteen of the 22 nurses had earned specialty certification in palliative care on-site at the NCCCR.
Ethical Considerations
This study was approved by both the Hamad Medical Corporation and the University of Calgary Conjoint research ethics board under Certificate Numbers HMC-IRBMRC-050153 and REB20-0792, respectively.
Data Analysis
When reporting qualitative research, it is crucial to recognize the potential for researcher bias via a process known as reflexivity both before and during data analysis. In this study, the researcher maintained a reflective journal to help avoid this type of bias. Focus group discussions were digitally recorded and transcribed verbatim. The accuracy of the transcriptions was checked by comparing the transcripts with the digital recordings. The transcripts were then divided among the researchers, who worked in teams of two to analyze and code the data. After content analyses, which involved a process of being immersed within the data and then coding data to create linkages and hence themes, the researchers discussed any differences they had and then arrived at a consensus on the major themes (Morse, 1994). It was through this discussion that these themes emerged.
Findings
The findings show an association between COVID-19 and the increase in demands on nurses as they carried out their day-to-day duties providing care for patients in the palliative care unit. Themes that emerged throughout the data consisted of transitioning to the new normal, ethical dilemmas, and collaboration and support for fellow colleagues (see Table 1).
Theme 1: Transitioning to the New Normal
Nurses participating in this study talked about the unpredictability surrounding COVID-19. They expressed the uncertainty that became evident in their formerly routine environment. For some, it was difficult to understand what to do. They wondered how to assuage patient fears and make them feel safe and secure as they were dying. Questions engulfed their minds, taking them to an unsettled place of disquietude. Some nurses wondered whether they would contract the virus from their patients or transmit it to family members. All of these feelings of uncertainty led to being obsessed over what was to come next. Below is an excerpt from the focus group participants.
Obsession
The nurses were fearful as they set about their daily tasks.
Initially, when this started in our mind, we should know if we are infected, we should not transfer this to our colleagues.
We were afraid of taking the infection home. We heard that infected people will die immediately[horizontal ellipsis]we were disinfecting everything.
...We were very worried because one staff was sneezing, and his eyes were red he told us that this is because of his chronic allergy. But we insisted on sending him home and he had to be tested as per their colleagues' request."
Sometimes patients get transferred to the unit, but you don't know if they are infected.
However, nurses noted that after the initial panic had subsided, they increased their diligence with regard to measures necessary to prevent contamination and cross contamination. They began to arm themselves with information that would protect themselves, their patients, and their family members. In the following, nurses describe the support in the form of awareness they received from the various departments at the NCCCR.
Awareness
The nurses were hopeful when information could be readily accessed.
Hamad Corporation gave us information each minute. They were updating and supporting us.
We had daily huddles to discuss any updates related to COVID-19, and infection control personnel would come around to provide information and support daily.
Participants mentioned how it was important for them to maintain a sense of calm for their patients. Perhaps it was a way of ameliorating how they felt within themselves. Once the initial panic had subsided, it was time to acclimate to the new normal.
Normalization (new normal)
The nurses realized they must acclimate to the milieu of the context of the situation.
In the beginning we were scared; now we feel confident and competent.
Now there are fewer restrictions, especially in the palliative care unit, as all rooms are private. We communicated with the nursing leaders and multidisciplinary team[horizontal ellipsis]we allowed the family to stay-especially for dying patients.
Slowly, slowly we understood the situation and we tried to accept the situation and to act in accordance with the situation. Now the situation has changed, and we are more relaxed and less stressed.
Things are returning to normal, and we are relaxed. I feel free now.
Nursing through a pandemic is fraught with all kinds of unknowns, and COVID-19 has been associated with so many deaths. Being a nurse requires striking an equitable balance between accountability to patients and family. COVID-19 left everyone with a sense of the unknown. For healthcare workers, there was the added complexity of ethical dilemmas related to their role as a caregiver and to their uncertainty regarding whether they could safely enter their own home environment.
Theme 2: Ethical Dilemmas
Palliative care includes providing comfort measures and allowing family members to visit at will. During a pandemic, this was a difficult task that required the nurses to grapple with new policies that excluded family and children from visiting loved ones. The nurses wrestled with the thought of not being able to address the last wishes or provide sufficient comfort to patients, which was normally provided by family members. This situation was particularly difficult for those patients with small children, which created a kind of angst in nurses that many had never previously felt.
Fulfilling the last wishes of terminally ill patients
Working in palliative care means requires attending to patients.
So that was really a challenging situation for us. Some had small kids. Small kids were not allowed into the hospital.
One lady died in our unit, and we could not fulfill her wishes. Her last wish was to see her son. She died without seeing her child.
Some patients were unable to travel back to their home countries because of travel restrictions. We tried to overcome this issue by arranging video calls with their families. This gave a little comfort to our patients. That was our goal.
Nurses had mentioned that, at times, patients requested traditional food. However, that was difficult because items from the outside could not be brought into the facility for fear of contamination. However, some family members responded aggressively out of a fear that their loved ones would die alone without the comforts of home.
Terminally ill patients requested their home food[horizontal ellipsis]which was not allowed[horizontal ellipsis]. With our program coordinator, we made a decision to allow home-cooked food.
One of the relatives was aggressive, and he wanted to see the patient. He asked me if it was my mother or father in this situation and I could not visit, how would I feel? Staying with the patient for 10 to 15 minutes is not enough. There are a lot of restrictions.
The nurses were poised to deliver as many last wishes to the patient and family as they possibly could. In the face of death, family members were so engrossed in ensuring their loved ones were as comfortable as possible and had all the comforts of home that they momentarily forgot the veracity of the situation. It left the nurses with a sense of helplessness. There were little they could do except comply as best they could and keep a demeanor that exuded warmth and comfort as they worked to fulfill the wishes of their dying patients.
Patients traditionally depend on verbal and nonverbal communications with nurses. However, with the new restrictions in place because of COVID-19, such communication was not possible. When a nurse walked into a room with their face covered by a mask and personal protective equipment (PPE), that sense of warmth is absent, which changes the first impression of patients.
The smile behind the mask
We enter a room with a smile, but they can't see that through our masks. So, we try other ways to show caring.
We approach the patient with a smile on our face, but the mask is covering our face, which hinders the communication between us and the patient[horizontal ellipsis]. Through our smile, we want to show them that we are open and that we are there to help them. But the mask[horizontal ellipsis]covers that up. Then, we changed the situation by conveying all this through our voice.
Providing quality of care is a core responsibility of nurses. There should be no limits placed on the type of care that is given. Nurses spend time providing therapeutic touch to patients so they may feel valued and have a sense of belonging. However, being required to physically distance and to limit time spent with patients made it particularly difficult to provide appropriate care to patients near death.
Maintaining physical distance while emphasizing quality of care
Our patients need more time; our patients are bedridden, and some are in the dying stage. We cannot give care in just 5 minutes and then leave the room. For some patients a bed bath will take one and half-hours. For some patients it takes even more time.
Some patients, they want to hug and touch us. Through touching, we can provide psychological support to the relatives and even to the patients[horizontal ellipsis]. Physical distancing limits our expression and activities.
How to face this difficult situation, especially for end-of-life care, we cannot[horizontal ellipsis]distance ourselves from our patients. We cannot limit exposure.
During the grieving process when a patient is dying, we cannot provide the power of touch and the power of healing to the grieving family.
She was crying loudly and hugged me after her son's death. Even though we did not want it, they came and hugged us. We were concerned about our families and children in this situation. It was difficult to maintain physical distancing.
Nurses are ubiquitous and patients have come to expect that nurses will be there to provide warmth and caring. On the other hand, nurses deal with death, dying, and grief in palliative care every day. However, this can be onerous at best during a pandemic in which multiple restrictions exist. In this new world where everything is turned upside down, nurses must support each other to wrestle with this new way of being as they provide care within their respective healthcare units.
Theme 3: Collaboration and Support for Fellow Colleagues
During COVID-19, there were increased case numbers in every department. This led to the redeployment of many nurses from one unit to another, including palliative care. Nurses expressed apprehension at arriving in a new unit and having to follow the lead of the other more-experienced nurses in that unit. Many who went to other units felt out of place as they cared for patients who were dying. This led to the need for collaboration between nurses to survive in a new environment.
Experience of deployed nurses
The nurses felt supported when working in the comfort of their home environment.
I was moved to another unit for one month. So, during that time I felt I was left alone because I could not see my colleagues. Then, my colleagues came to the unit and visited me and they asked how I was feeling[horizontal ellipsis]if I was okay.
[horizontal ellipsis]I felt cared for by everybody as a redeployed nurse. We have very good leaders. The supervisors prepared us well to work in the COVID facility. We were 100 staffs from different facilities. The environment was safe, and they taught us the donning and doffing procedures. They observed us and, if we made mistakes, they corrected us in a good manner. Really, after 45 days, I did not want to come back to my unit. I felt I'm a valuable staff.
One of the issues that many of the nurses mentioned was a fear of contracting COVID-19 and worries regarding how others would perceive them if they did. They wondered if others would think they had been negligent in their duties. They also feared avoidance by fellow colleagues in the event they contracted the virus.
Experience of COVID-19-positive nurses
When they became ill, the nurses perceived support from their colleagues.
I was panicked and sad when I was informed, because I was worried about myself and my family at that time.
I thought they would avoid me, but they did not.
We received support from our colleagues through frequent calls. On a daily basis they asked how we were feeling.
When we got COVID and when we came back everyone was really supportive, and we did not feel anything. No one was pointing at us or anything.
We did not feel isolated.
Some of the participants mentioned the aphorism that most nurses "eat their young." However, in these unprecedented times, the opposite was true. Nurses dealt with upheaval daily and made their way through by banding together until they eventually settled into a new normal.
Discussion
This interpretive descriptive study elucidated key themes experienced by nurses working during the pandemic. These themes consisted of transitioning to the new normal, ethical dilemmas, and collaboration and support for fellow colleagues.
Within the milieu of healthcare, daily life can be a relatively organized entity but a pandemic changes that. The nurses in this study stated they felt very anxious, almost to the point of obsession, at the onset of the COVID-19 outbreak. There was a fear of the unknown and the panic projected by family members of patients in palliative care. In a study on work stress among Chinese nurses in Wuhan province, the nurses exhibited a level of anxiety higher than the national standard anxiety level (Mo et al., 2020). The conclusion from that study stated that nurses were generally under pressure as they fought against the virus. According to Garcia-Rojas et al. (2015), "Strengthening social support amongst nurses can mitigate job strain and reduce anxiety" (p. 332). In this study, the nurses mentioned that, after they had been armed with further education and provided (and received) support through daily huddles, they felt life could return to a new normal. With the regular provision support and the daily implementation of infection control procedures, fear and anxiety began to give way to the normalcy of daily work.
Within the palliative care unit, end-of-life care was provided according to the wishes of dying patients. Libo-On and Nashwan (2017) reported that nurses perceive a good death to be "one that involves dignity, comfort, freedom from pain and the ability of patients to spend quality time with their family before passing" (p. 66). Because of governmental rules on social distancing, hospitals were required to limit visitors. As the nurses began to normalize their everyday tasks while working with patients, ethical dilemmas arose. As part of the infection control requirements, nurses were expected to spend less time with patients to minimize exposure. However, nurses found this extremely difficult as their patients were dying without the full support and presence of their family members. Innately, nurses offer physical, emotional, and spiritual support to patients through the cancer care journey. Bultz (2016) found that nurses generally take the lead in providing psychosocial support to clients with cancer. Likewise, nurses in this study felt it more important to spend time with their patients and did not wish to compromise the limited time that they had left. They spent just as much or more time with patients during the pandemic as before.
Patients are acclimated to seeing smiles on nurses' faces when they enter patient rooms. However, the donning and doffing of PPE prevented patients from seeing these smiles, which were hidden behind masks. This significantly reduced the comfort level of patients. To mitigate this, the nurses used voice inflections, modulated their spoken tones, and used therapeutic touch. Moreover, nurses grappled with the physical distancing requirements, especially because they wore PPE in everyday care. In Bijari et al.'s (2012) study, which looked at the efficacy of therapeutic touch in preterm infants, the researchers noted that the use by nurses of therapeutic touch "decreases stress and energy expenditures in preterm infants" (p. 2). Therapeutic touch is something nurses can do readily and without an order from a physician. The nurses in this study recognized the need for increased comfort because of the panic created by the pandemic and hence felt the need to create comfort among their patients, especially as they were unable to show their warm smiles.
The initial phases of the pandemic resulted in multiple hospitalizations of COVID-19-positive patients, requiring the mobilization and redeployment of nurses across departments. In addition, nurses from palliative care units were redeployed to other, similarly unfamiliar areas of the hospital. Taken together, this was a very stressful time for nurses who were already under pressure because of the pandemic. In Lasater et al.'s (2020) study, which looked at chronic hospital understaffing and COVID-19, the researchers found that hospital nurses were burned out, as their units were understaffed even before the pandemic had started. Moreover, working in an environment inundated by patients with COVID-19 required nurses to be more collaborative and supportive than ever before. Collaboration among healthcare providers is critical to the provision of efficacious and high-quality care (Liu et al., 2020). The nurses investigated in this study, while noting their anxieties regarding being redeployed to a strange environment, stated that they and other healthcare personnel were generally collaborative and supportive. They were especially supportive to fellow nurses who had contracted and then recovered from the virus.
Study Limitations
A limitation of this study is that it included only one hospital within the region, and therefore, the findings cannot be generalized to other countries.
Conclusions
It is imperative that sufficient support be given to nurses in all aspects of their day-to-day work. The experience of palliative care nurses in the healthcare system shows their need for normalcy in their working environments as they transition to a new normal. Palliative care patients require nurses to be supportive, nurturing, and caring. However, to achieve this during a pandemic requires nurses to mutually collaborate and find strength in each other. In this study, the nurses in the palliative care unit worked within an unsettled situation marked by changing policies, panicked family members, and concerns over contracting the disease themselves. This situation may face nurses with ethical dilemmas as they navigate through their work environment.
Author Contributions
Study conception and design: JJ
Data collection: JJ, AAB
Data analysis and interpretation: JJ, AAB, ZI
Drafting of the article: JJ, AAB, ZI
Critical revision of the article: ZAE, AH
References