“It took so much of the humanness away”: Health care professional experiences providing care to dying patients during COVID-19

Abstract

COVID-19 has affected healthcare in profound and unprecedented ways, distorting the experiences of patients and healthcare professionals (HCPs) alike. One area that has received little attention is how COVID-19 affected HCPs caring for dying patients. The goal of this study was to examine the experiences of HCPs working with dying patients during the COVID-19 pandemic. Between July 2020–July 2021, we recruited HCPs (N = 25) across Canada. We conducted semi-structured interviews, using a qualitative study design rooted in constructivist grounded theory methodology. The core themes identified were the impact of the pandemic on care utilization, the impact of infection control measures on provision of care, moral distress in the workplace, impact on psychological wellbeing, and adaptive strategies to help HCPs manage emotions and navigate pandemic imposed changes. This is the first Canadian study to qualitatively examine the experiences of HCPs providing care to dying patients during the COVID-19 pandemic. Implications include informing supportive strategies and shaping policies for HCPs providing palliative care.

The COVID-19 pandemic placed an enormous strain on the healthcare system, causing unparalleled changes to patient care delivery. Hospitals and healthcare facilities across Canada became inundated with cases of COVID-19, forcing health care providers (HCPs) to adapt and deliver care in unprecedented ways. Major practice changes were quickly put in place within hospital settings such as limiting in-person contact with patients, use of personal protective equipment (PPE), and strict visitor limitations; the latter included extended time periods of virtually no visitor contact (Ann-Yi et al., 2021; Hanna et al., 2021). Alongside these restrictions, HCPs faced staffing shortages, working extended hours, and having to provide care to higher patient volumes than usual (Liberati et al., 2021; Poon et al., 2022). Furthermore, HCPs also experienced increased risk of being infected by COVID-19 (Nguyen et al., 2020). All told, the impact of COVID-19 on the healthcare system has been profound, for patients and HCPs alike (Ann-Yi et al., 2021; Ayele et al., 2021; Hanna et al., 2021; Neimeyer et al., 2023).

Many studies have reported a high prevalence of anxiety, depression, posttraumatic stress disorder (PTSD), moral distress, and burnout among healthcare providers who had been at the forefront of delivering care during the pandemic (Bates et al., 2021; Billings et al., 2021; Fiest et al., 2021; Greene et al., 2021; Han et al., 2021; Kisely et al., 2020; Reynolds et al., 2022; Rodriguez et al., 2020; Tasnim et al., 2021). Much of the early emotional distress was found to be rooted in PPE shortages, particularly during the first wave of the pandemic, putting a greater strain on the physical and psychological well-being of healthcare providers (Billings et al., 2021; Greene et al., 2021). Several studies found that HCPs also reported challenges in coping with increased workload and burnout (Bates et al., 2021; Billings et al., 2021; Han et al., 2021; Hanna et al., 2021; Myran et al., 2023; Rodriguez et al., 2020).

Working with dying patients is a particularly demanding area for HCPs given the emotional demands of the work, including supporting patients, their family members and the distress associated with death (Linklater, 2010). Research has demonstrated that many palliative care HCPs report not receiving adequate support to deal with distressing emotions from witnessing death (Pereira-Gray et al., 2018). Additionally, some research has suggested that patient deaths can influence the likelihood of burnout (Granek & Buchman, 2019). There has been speculation that the COVID-19 pandemic and its impacts, such as PPE and visitor restrictions, may differentially impact workers exposed to dying patients (Cheng & Wah-Pun Sin, 2020).

There has been a dearth of literature examining the impact of COVID-19 on HCPs working with dying patients during this timeframe. Cook et al. (2021) conducted a mixed-methods single-center study examining clinician perspectives on caring for dying patients during the first 3 months of COVID-19, highlighting the challenges of visiting policies and PPE. However, this study was conducted for a short period of time at only one clinical center. Care toward the end of life must also include attentiveness to dignity (Chochinov, 2002), which requires treating patients as persons, providing adequate supports, and involving families whenever possible. This has been particularly difficult during the pandemic, due to public health measures including visitor restrictions and PPE. As such, it is critical to examine the unique and broad experiences facing HCPs caring for dying patients during COVID-19, to better understand the challenges they faced, how they responded, and how they addressed their unmet needs.

Aim

The aim of this study was to examine the experiences of Canadian frontline HCPs caring for dying patients, of any cause, during the height of the COVID-19 pandemic. We sought to engage HCPs in Canada who identified themselves as providing end-of-life care during that timeframe. We recruited a multidisciplinary cohort of HCPs in various Canadian healthcare institutions.

Methods

Setting

All study participants were recruited from a sub-sample of a larger study aimed at exploring the long-term and subsequent psychological morbidity among frontline healthcare providers caring for dying patients during the COVID-19 pandemic. The study population in the larger study consisted of frontline healthcare professionals, including palliative care physicians, generalists, psychiatrists, intensivists; nurses, physician assistants, healthcare aides; psychologists, social workers, and spiritual care professionals. The larger study sample was recruited using social media, posters in hospitals and long-term care facilities, and via email distribution. Participants from the larger study who expressed interest in taking part in the qualitative study were subsequently contacted. Those meeting eligibility criteria were asked to provide informed consent. Recruitment from this study started in April 2021.

Study design

We conducted semi-structured interviews, using a qualitative study design rooted in constructivist grounded theory methodology (Charmaz, 2014). This allowed for a rich, in-depth exploration of the experiences of HCPs who cared for dying patients during the COVID-19 pandemic. All interviews were conducted via telephone.

Participants

Participants from the aforementioned study were invited to enroll in this qualitative semi-structured interview study, exploring issues related to how they were personally and professionally affected by the pandemic. The sub-group of participants who agreed to take part in the current study met the following inclusion criteria: (a) 18 years of age or older, (b) frontline healthcare workers, (c) provided care to dying patients during the COVID-19 pandemic and (d) were practicing in Canada. Eligible participants were sent a consent package and a link to the University of Manitoba’s Research Electronic Data Capture (REDCap) platform to e-sign a consent form. After obtaining consent, participants were contacted by email or phone to schedule an interview. Recruitment continued for a period of 15 months and ended in July 2022.

Data collection

We developed a semi-structured interview using an open-ended interview guide (see supplementary material, Appendix A). Interviews were 30–70 minutes long, allowing for an in-depth exploration of the experiences of HCPs attending to dying patients during the COVID-19 pandemic. The interview length varied for two reasons; first, there was diversity in how much or little participants had to say. Secondly, many participants described experiencing ongoing pandemic-related issues, thus limiting their time to complete these interviews. The interview guide was first tested on 3–4 participants and then revised to target areas of thematic interest as identified by the research team members. Individual interviews were conducted by SP, who was trained by HMC and KR, both experts in qualitative interviewing. Interviews were audio-recorded, transcribed verbatim, and later deidentified to ensure participant anonymity.

Ethics

Ethical approval was obtained from The University of Manitoba Health Research Ethics Board (Ethics ID no. HS24291[H2020:423]).

Qualitative analysis

We used constructivist grounded theory for our analyses (Charmaz, 2014). This approach calls for paying particular attention to language and exploring the meaning of words and terminology. Completing coding in this manner allows researchers to position the data within cultural, social, and historical contexts (Charmaz, 2020). Constructivist grounded theory is a fluid and intertwined process that involves going back and forth between data through 3 interconnected phases. The first phase is initial coding, followed by focused, and theoretical coding. To start coding, reviewers (GG, LP) independently coded three randomly selected transcripts. Reviewers coded each line separately to help identify succinct concepts and categories, thus remaining grounded in the research data. Reviewers also created memo documents, allowing for a more focused approach, tagging, and collapsing emergent codes into broader themes and subthemes. Initial codes and memo documents were then compared and agreed upon by reviewers, ensuring code validity. An initial theoretical framework was created, based on commonalities across participant data, thereby detailing relationships between higher-level themes and subthemes. Investigators (HMC, KR, JB, TH, JH, KO) then collectively reviewed and discussed the initial framework until reaching consensus on its construction and various components. Using the initial framework, reviewers (GG, LP) independently coded and compared a set of five transcripts. Once in agreement, these same reviewers coded the remaining transcripts, with the framework consistently being compared, refined, and reviewed by investigators (HC, KR) to ensure the representativeness of subsequent transcripts. Data was organized using QSR NVivo 12 software (QSR, 2018).

Results

Sample description

We completed in-depth qualitative interviews with N = 25 healthcare professionals from across Canada, who indicated that they had provided care to patients nearing death during the COVID-19 pandemic. Most participants were from Manitoba (44%), followed by Alberta (24%), Ontario (12%), and Quebec (8%). Participants had a mean age of 45, were primarily female (88%), married (64%) and working full-time (80%). Participants worked in a range of professions within healthcare, which included physicians, medical residents, nurses, social workers, respiratory therapists, and physician assistants. Participant had an average of 16 years of work experience. See Table 1 for a full description of demographic characteristics.

Table 1. Demographic summary of healthcare professionals (n = 25).

		n (%)
Age [mean ± SD (range)] (years)		45 ± 13.3 (26– 66)
Gender	Male	3(12)
	Female	22(88)
Province	Alberta	6(24)
	Saskatchewan	1(4)
	Manitoba	11(44)
	Ontario	3(12)
	Quebec	2(8)
	Nova Scotia	1(4)
	Newfoundland	1(4)
Marital Status	Married	16(64)
	Widowed	1(4)
	Divorced	3(12)
	Single	5(20)
Employment Hours	Full-time	20(80)
	Part-time	3(12)
	Casual	1(4)
	Student Rotation	1(4)
	Total	25
Profession	Physician	12(48)
	Physician Resident	1(4)
	Physician Assistant	1(4)
	Nurse	6(24)
	Social Worker	3(12)
	Respiratory Therapist	2 (8)
Years within profession [mean ± SD (range)] (years)		16 ± 12.5 (2– 42)

Grounded theory framework

Thematic analysis revealed two contextual core themes (see Figure 1): (1) Impact of Pandemic on Care Utilization and (2) Impact of Infection Control Measures on Care Provision. These themes describe how the pandemic disrupted access to healthcare and ways it impinged on HCPs ability to meet their patients’ needs. There were also two additional main themes, labeled Moral Distress in the Workplace and Impact on Psychological Wellbeing, which describe ways in which HCP were affected by working in the face of these unprecedented challenges. This necessitated the cultivation of coping strategies, described in the core theme labeled Adaptive Strategies to Help Manage Emotions and Navigate Pandemic Changes. Each of these themes has associated sub-themes detailed below, with additional supporting quotes found in our Supplementary Materials. Quotes are provided with a participant ID number and job title.

Figure 1. Qualitative framework.

Impact of pandemic on care utilization

This core contextual theme describes how HCPs saw the pandemic influence patients’ decisions to access end-of-life care.

Patient and family fear

HCPs reported patients’ reluctance to utilize care due to various fears and uncertainties directly related to COVID-19 and public health measures targeting infection control and containment strategies. This theme subsumed various subthemes including Avoiding Institutional Care, Reliance on Community Resources, Presenting Late to Care, and Dying at Home.

Avoiding institutional care

HCPs described very specific fear-based behavior changes in patients and their families who chose to avoid the hospital and to remain at home, for fear of possible exposure to COVID-19, restrictive visitor policies and consequent separation.

There was no vaccine, and people just weren’t coming into hospital, because they were refusing to, due to fear, and that they didn’t want to be separated from their families at end of life. So that was a large change. (#5, Palliative Care Physician)

Many of them [patients] are scared to even come in at the beginning, they were petrified of never leaving hospital. Not because [they were afraid of] dying by virtue of their disease, but now this new sinister thing called COVID. (#3, Physician Assistant).

Reliance on community resources

Avoidance of institutional care led many patients and their families to rely on community resources, as a stopgap measure instead of hospital care. HCPs described this as a dramatic shift in care utilization relative to before the pandemic.

Usually, our palliative care unit is maybe not full-full but almost full. And here we were practically half-full with a demand for home care that was huge. So, that’s kind of switched it up for us. #11 (Palliative Care Physician).

Presenting late to care

With patients choosing to avoid the hospital, and shift to a reliance on community resources that sometimes weren’t sufficient to address their healthcare needs, HCPs noted that patients often delayed receiving timely and appropriate care, significantly impacting their health. They would present late to care with worsened illness severity that, if addressed earlier, could have been prevented or mitigated. “So, people were staying at home longer, and when they showed up to the hospital, they were a lot sicker.” (#5, Palliative Care Physician).

Dying at home

HCPs described how, during the pandemic, some patients were refusing hospital-based end-of-life care, preferring to remain at home with their families. This sometimes came with considerable compromises to the quality of care when it meant optimal care was not available at home. “Yes, so patients want to die at home, they want to stay home, but then they couldn’t get what they needed really.” #10 (Palliative Care Physician).

Impact of infection control measures on care provision

This second contextual core theme details how pandemic-related public health policies, based on principles of harm reduction and measures limiting virus transmission, influenced HCP’s experiences of providing end-of-life care. Specifically, challenges related to the absence of families due to visitor restrictions, transitioning to remote care, using PPE, and limiting patient contact were all factors identified as impacting the provision of care.

Changes in care related to absence of family

This sub-theme is related to the impact of visitor restrictions on HCP relationships with families. HCPs noted that families were not as available to offer collateral information, nor were they available to provide care and support. HCPs also reported needing additional resources to help maintain contact with patients’ families outside the hospital while also taking on broader, supportive roles to help mitigate the effects of family absence on patient care.

Challenges in knowing the patient

With the absence of family, HCPs described challenges in knowing their patients at end-of-life. There was a shift in patient care, whereby families were no longer present to act as mediators or an additional point of contact for HCPs to reach out to and acquire supplementary patient knowledge.

All of a sudden now, there was no family there to make a person out of the patient who was lying in the bed, and it really hinders the therapeutic bond that we have with families. Like when you start to recognize that someone’s a human not the person in bed. (#22, Intensive Care Physician).

Challenges maintaining contact with family

To rectify this inability to know patients from the family perspective, HCPs noted having to work harder to maintain contact with families by other means. Pre-pandemic, families were present in hospital to have conversations around goals of care and were able to oversee any changes in patients’ health. Instead, HCPs described telephone conversations replacing face-to-face contact, whereby keeping families updated could be an arduous, time-consuming task.

Normally, when I would talk about death and dying with families they’ve been at the bedside, they’ve seen the changes and so there’s something… They intuitively, a lot of the time, know what’s happening. Whereas with this they haven’t been there, they haven’t seen them, they don’t know and so you sort of… It takes a lot longer to have those conversations over the phone and… Or it feels like it takes a lot longer. (#4, General Internal Medicine Physician).

Taking on broader roles

HCPs described needing to take on additional improvised roles to help mitigate impacts of family absence on patient care. These roles included being present at the bedside with dying patients and taking on administrative duties (i.e., phoning family members, contact tracing, online shopping for patients). “So, things we would have to do, we’d just I guess spend more time at the bedside or be present at the end of life when normally we would be a little bit more aloof in those situations.” (#7, General Internal Medicine Physician Resident).

Remote care

To mitigate infection transmission within hospitals, HCPs described having to quickly transition from in-person care to virtual care, adopting to telephone and videoconferencing platforms. HCPs described the inherent limitations of these practices, such as the inability to do proper assessments and make diagnoses, with additional challenges such as limitations in patient communication.

Adopting virtual care

HCPs detailed difficulties with rapid transition to virtual care such as videoconferencing and the challenges adopting to new technologies. Likewise, they pointed to the exclusionary nature of virtual care, referencing patients lacking internet or technology access or having problems using videoconferencing technology.

There were more headaches with the videos than there was satisfaction with it. Half the time, I have lots of patients who live in places where internet connection is very poor. And this might have been the first time anybody had ever used video conferencing, or video chat. I would be doing a video conference with a patient, and the picture would be upside down. It’s quite trivial, and yet it would be very challenging, and add just additional stress. (#6, Palliative Care Physician).

Navigating communication over the telephone

Given the complex nature of videoconferencing, many HCPs reported relying on phone calls to connect with patients. Some HCPs described the benefits of phone calls, such as ease of use and privacy, for example “I actually was just happier to speak to them on the phone because there you can have a real confidential conversation and it’s clear and you can hear each other better.” (#11, Palliative Care Physician). However, many HCPs identified limitations with using the telephone that required more frequent follow-up, “And when you’re doing virtual care, you can’t see someone so you might call them more frequently [for] the same level of follow up. And so our clinics were much fuller and we really needed a lot more support and resources and I think we didn’t really get that” (#1, Palliative Care Physician). Other HCPs described the lower quality of telephone interactions, “Telephone conversations just don’t replace face to face contact” (#2, Palliative Care Physician).

Medical assessment and challenges with diagnostic accuracy

Forced to rely on virtual alternatives to direct patient care, HCPs detailed difficulties completing medical assessments and making diagnoses without physical examinations. This was especially difficult with new patients or patients with new symptoms, as HCPs lacked the visual and tactile cues needed for accurate assessments. HCPs also described the challenge of obtaining health information and history over the phone, indicating eliciting information on the phone yielded limited information of patients’ medical history and knowledge.

Somewhere along the way she realized, and we realized that phone calls don’t give you the whole picture and some patients at home were probably starting to deteriorate and we would have probably been able to pick up on that a little bit more easily by seeing them and being there physically.” (#11, Palliative Care Physician).

Personal protective equipment (PPE)

HCPs described the implementation of PPE (e.g., gloves, facemasks, face shields, goggles, and gowns), which, although used to protect HCPs and patients and limit virus spread, had negative consequences such as depersonalizing patient care and disruptions in interpersonal communication.

Depersonalization of care

HCPs indicated that dawning PPE interfered with their ability to express or convey their personal identity, unable to portray their humanity to their patients; at times this engendered fear, particularly with patients suffering delirium. HCPs explained that PPE reduced opportunities for physical contact through touch, which many felt was an integral component of palliative care.

I also do medical aid in dying and on several occasions, I had the experience of having to show up at someone’s house dressed like an astronaut in a hazmat suit, in the context of intimate care like that it’s just completely bizarre and alters the experience rather dramatically, both for the caregiver and for the patients and their families. (#2, Palliative Care Physician).

Disruption in interpersonal communication

HCPs indicated that being dressed head-to-toe in PPE hindered their ability to communicate and connect with patients. It infringed upon their ability to communicate using non-verbal cues and body language (i.e., PPE obstructed the face, which led to additional reliance on eye contact and tone of voice). Several HCPs described how PPE changed the way they spoke, needing to speak slower, louder, and enunciate more clearly.

Then there’s other things like facial expressions and body language. Which are masked when you put a mask on and have a visor, and you’ve got your yellow gown on, and your gloves. When you’re doing that kind of stuff, all that body language becomes distorted. And it’s hard for patients, particularly if they’re hard of hearing, or they’re visually impaired, to really get a good sense of what you’re conveying. (#6, Palliative Care Physician).

Limiting patient contact

HCPs also noted the impact of social distancing on patient care. Although some tried to spend more time with patients as they were actively dying, others found themselves limiting contact out of fear of contracting COVID-19. This lack of actual presence often impinged on their ability to connect with their patients.

Looking and being with patients when they were dying and [myself] not being vaccinated was… You don’t want to get as close to people and so it means things like sitting on the side of the patient’s bed or leaning in close so they can hear you speak, like these things that are important and comforting for somebody who’s dying, you don’t want to do that. And so you’re really distancing yourself from people. (#4, General Internal Medicine Physician).

The contextual changes imposed by the pandemic, including its detrimental effects on healthcare utilization and the distortions in care resulting from public health measures, exacted a considerable toll on HCPs. This is described in the following core themes, including Moral Distress in the Workplace, and Impacts of Psychological Well-Being.

Moral distress in the workplace

The changes in healthcare resulting from the pandemic led many HCPs to experience moral distress. The latter is defined as the experience of distress, when one cannot act in a way consistent with their values or ethical beliefs (Epstein & Delgado, 2010). HCPs reported ethical dilemmas and feeling stymied in terms of an authentic response as promoting moral distress.

Ethical dilemmas

With the pandemic dramatically altering healthcare, HCPs described dealing with increasingly complex ethical dilemmas. For instance, HCPs noted internal conflicts related to challenges in navigating pandemic restrictions while trying to maintain quality care. Other stressors highlighted by HCPs included having inefficient resources and the challenges of providing supportive care.

Challenges regarding patient disposition

To minimize the spread of contagion within hospitals, infected patients were assigned to dedicated COVID-19 units. Moving patients, particularly those with dementia, into these isolated units caused HCP moral distress. To accommodate the rapid influx of patients, HCPs reported having to send patients home or transfer them to less optimal wards, which often meant compromising patient care.

They wanted to have residents that tested positive in the same areas, so they were moving residents around. And I have this image of a resident in her bed, being run down the hallway with a bag, a garbage bag of her belongings at her feet, and she was crying. So, a lot of this happened without explanation to the residents…but this was a directive from Public Health…I mean, over 48 residents died, and I still really struggle with that…And residents were moved to other rooms, their belongings weren’t brought with them and so a lot of them died in an unfamiliar room, with none of their personal things around them. No family. (#9, Social Worker).

Navigating pandemic restrictions

HCPs had to manage end-of-life care while also serving as unwilling gatekeepers forced to restrict family access. They had to navigate excruciating clinical scenarios, while adhering to restrictive public health policies. This included trying to gauge when patients were likely to die, when to grant family visitation rights; limiting the number of visitors permitted and forcing families to select those few allowed to be present at the time of death. HCPs felt like “police person[s]”, having to say “no” to families, knowing the long-term effects of isolation and family separation at this crucial time.

And it was extremely hard on the physicians and staff. Because we all felt so helpless in that way. And then I also really felt bad for our First Nations people. Because part of their culture is to have all the family there with you to help you on your journey across. So, it took so much of the humanness away. The humanity away from the carer that we usually prescribe. (#13, Palliative Care Physician)

Trying to manage with inadequate resources

HCPs reported the strain of carrying larger caseloads with limited resources, such as PPE and staff absenteeism due to illness. Without adequate PPE, HCPs felt unsafe at work, despite feeling obligated to work to support their colleagues and patients. As exposure to COVID-19 increased, more HCPs and their families became sick, resulting in increased workloads, working across departments, diminished efficiency, and cutbacks in patient intake. “I think our team basically realized that the moral distress around trying to manage with less resources than we really needed was better than the moral distress of trying to sort of not help people.” (#1, Palliative Care Physician).

The challenge of providing supportive care

With higher caseloads, families unable to be present, and a lack of resources, HCPs felt impeded in “doing their job properly” and disappointed with the quality of care they were providing. In view of limited resources and the absence of family, they felt care was undignified and deficient, certainly relative to pre-pandemic standards of supportive care. HCPs often felt helpless and stretched thin, leaving them little time to interact with patients.

And so, thankfully, I know Psalm 23 off by heart, so I just said that and sang a hymn, held her hand and offered some comfort, but when I got back to my office, I just cried because it felt very inadequate. (#9, Social Worker).

Justify bending the rules

Attempting to preserve patient relationships and salvage some level of humanity, some HCPs engaged in rule-breaking behavior bent toward supporting patients and families. Such behaviors included allowing additional visitors, hugging patients, and briefly lowering masks to show patients their face.

So, we kind of… We were outlaws and we decided well, we don’t know if somebody could die in the next few hours, in the next few days, in the next month. And we decided that, as outlaws, we would allow visitors to come if we thought the patient had less than a month prognosis. (#1, Palliative Care Physician).

Advocacy

HCPs reported feeling the need to advocate for their patients. They made efforts to loosen visitor restrictions, particularly as death became imminent: they sought sufficient resources to support staff and fought to bring back volunteers.

But I think we all had a few consults but fairly early on we realized that there were just really impossible to do that. And so we were able to advocate for… To start seeing more people in person but then it was really hard to advocate to get a family member to come which in palliative care is also really important. (#1, Palliative Care Physician).

Helplessness and guilt

When HCPs were unable to meaningfully change the clinical situation, they experienced feelings of helplessness and guilt while witnessing or even reflecting on patients whose end-of-life care they deemed fell below acceptable standards.

And then the part that makes me feel like I want to be tearful is the part when these people are coming into the hospital very sick or it’s anticipated that they’re going to become very sick and actively dying. You can tell that they’re scared. Watching somebody struggle for breath is impossibly hard and they’re alone and they might have an iPad. It was just really hard to see these people die alone and scared and just watching the pain or hearing the pain from loved ones because they knew this was happening…. You felt like you couldn’t be as helpful as the family required… You felt like your hands were tied (#8, Physician Assistant).

Impacts on psychological well-being

HCPs described the psychological consequences of caring for dying patients during the pandemic, such as anxiety, stress, fatigue, depression, systemic frustration, and anger. They also reported loneliness resulting from diminished contact and support from their loved ones.

Anxiety and stress

In response to the abrupt and chaotic onset of the pandemic, HCPs reported experiencing anxiety and stress based on the uncertainties surrounding COVID-19. More specifically, they felt bleak about the future and unsure how to protect themselves, their families, and patients from the virus. They also worried about unanticipated hardships, such as workload, being alone and strain on family relationships. “The entire team became quite anxious. There was the anxiety for those who were looking after the in-patients because we didn’t know at that point what COVID meant. We only knew that you could die from it.” (#6, Palliative Care Physician)

Fatigue and depression

HCPs reported feeling fatigued and depressed in the context of physical and emotional exhaustion. This was consequent to having many patients with acute needs; working with limited resources and suboptimal staffing; loss of breaks; and having to attend to numerous phone calls and emails.

But I just feel like now I almost feel like my body is… What’s the word I’m looking for? It’s being maybe a little bit overly protective and I kind of feel numb some days and I know that that’s also mental health. (#21, Registered Nurse).

Systemic frustration and anger

As the third and fourth wave of the pandemic set in, HCPs noted feeling increasingly angry with their institutions, public health regulations, and with groups endorsing anti-vaccine views.

It’s disrespectful to me because why am I doing all of this…? Why am I taking all of these precautions to avoid your loved one dying from Covid and you’re not taking the precautions? There’s the frustration, there’s a little anger to be… A little. Sometimes there’s a lot of anger about people who are anti-vaxxers and/or hesitant and not taking the PPE precautions the way they’re supposed to because why am I having to care so much about your loved one if you’re not? (#11, Palliative Care Physician).

Changes in personal and professional support

As a result of quarantine rules and social distancing practices, HCPs described the emotional challenges resulting from lost personal and professional support available to them during the pandemic.

Reduced in-person contact with social network

Because of quarantine and social distancing guidelines, HCPs felt isolated and withdrawn from their social support networks (i.e., family, friends, and colleagues). Many described difficulties being away from older parents or those living out of the province. They also described how work and quarantine regulations interfered with personal relationships and face-to-face contact, missing family milestones; with virtual methods (Zoom or Facetime) feeling insufficient.

So, my parents also live overseas so I haven’t seen them in about two and half years which has been hard. And then my husband’s family is in another city and his father is old and has been in and out of hospital and has been very unwell and so we’ve really had limited contact with him. So, that’s been hard. (#1, Palliative Care Physician).

Healthcare team cohesiveness

Given pandemic related disruptions, HCPs sought ways to navigate this new space. In some instances, teams drew closer through this shared experience, while for others, the stress of the pandemic led to tensions between coworkers.

I think we were maybe almost once a week we were just strategizing on how to deal with things. And really, it was great because it was stressful, but it really made our team very cohesive, I would say. That was one of the positive things is I think it really brought us together and we really realized how we could kind of work to make a better system. (#1, Palliative Care Physician).

Adaptive strategies to help manage emotions and navigate pandemic changes

As a result of the disruptions imposed by the pandemic on healthcare and the consequent emotional fallout, HCPs described adaptive strategies required to navigate this new environment. These strategies included engaging in self-care practices, seeking out emotional support, taking time off from work and reducing workloads.

Self-care: Mindfulness approaches (e.g., meditation, writing, mantras)

HCPs reported using various forms of self-care. These methods include journaling, mindfulness, exercising, and repeating mantras. “I ride my bike to work and that is a super helpful practice. The exercise helps me burn off some of that extra steam before I get home and it also is a time to kind of reflect.” (#4, General Internal Medicine Physician).

Finding support

To combat some of the aversive impacts of the pandemic on mental health, HCPs turned to family, colleagues, and medical support.

Family and colleagues

HCPs described the importance a support network of family and colleagues, at home and at work respectively. This wasn’t available to all of them, with some remaining largely isolated.

I’m very lucky that I have… My partner is very supportive, and he realized that there was something very, very, very wrong [with me]. And so, I think we were able to just… And then also the team, I think the crisis team recognized when they were speaking to me that there was also something very wrong and so… And my family doctor as well. (#1, Palliative Care Physician).

Formal support

In addition to support from family and colleagues, some HCPs accessed more formalize support, such as counseling or taking medication targeting their mental health challenges.

I have had a couple of friends that I spoke to, but… And I actually… I had a psychiatrist involved in my care. And because I certainly want to make sure that I'm working properly, so that, you know, I don’t do anything harmful to anybody else. So, yes, I was able to reach out to other professionals as well as to friends. So, that was good for me. (#13, Palliative Care Physician)

Taking time off and reducing workload

Many HCPs needed to reduce their workload or take time off to recuperate physically and emotionally. Some, however, reported working more, due to staff shortages and not having anything else to do because of things being closed during the pandemic.

When I came back from my two weeks of almost forced vacation, I was feeling good and happy to come back to work. And I’ve been… I talked with my colleagues, and they said okay, don’t let yourself get to that, take vacation time. And now I’m turning it back on them and I say you make sure you take vacation time. We’re okay, we’ll manage. Two of us to cover, we’ll be okay. (#11, Palliative Care Physician).

Discussion

This Canadian study examined the experiences of HCPs who cared for dying patients during the COVID-19 pandemic. Over a 12-month period, a cohort of 25 multi-disciplinary HCPs from across Canada described how the pandemic had impacted their work, how they reacted to those changes; and what adaptive strategies helped them cope with the challenges they faced. Our results indicate that pandemic related changes could be summarized in two core themes, impact of pandemic on care utilization, and impact of infection control measures on care provision. These changes, which profoundly disrupted and distorted usual practices of care for dying patients and their families, resulted in complex responses subsumed within two reactive core themes, impacts on psychological well-being and moral distress in the workplace. Participants also reflected on ways they tried to adapt and cope, which is described in a core theme, adaptive strategies to help manage emotions and navigate pandemic changes. Collectively, these core themes and their associated sub-themes portray the experiences of HCPs who cared for dying patients during the COVID-19 pandemic.

Consistent with prior reports related to COVID-19 (Barten et al., 2022; Chudasama et al., 2020) and SARS (Chang et al., 2004; Lu et al., 2007), our results demonstrate that delayed help-seeking resulted in HCPs encountering patients whose needs were more urgent or who were in more advanced states of decline. In our study HCPs described having difficulty providing care to patients who sought treatment in the advanced stages of their illness, knowing that these patients would have received better management of their illness had they been seen earlier. Furthermore, consistent with findings from Fallon and Kilbride (2021), many patients wanted to die in the comfort of their own homes, and workers were forced to adapt to provide more community-based care and resources. These findings have important implications for how to negotiate the balance between hospital versus community-based care during similar crises. Moreover, these findings highlight some other essential practice considerations, in anticipation of future pandemics. These include expanding home-based care, increasing virtual care to support remote populations and connect distant family members to their dying loved ones, and optimize PPE precautions.

The pandemic resulted in measures that stripped away humanity for many, including patients experiencing a poorer quality of life in their final days, and families feeling traumatized by being unable to visit or have very limited limit time at the bedside, which consequently led to complex bereavement (Neimeyer & Lee, 2022). This compromised HCPs sense of being able to practice quality, comprehensive palliative care, with many HCPs discussing the notion of ‘impoverished care’; being unable to provide the comprehensive, human-centered care that they felt called to deliver. Many participants described the difficulty of navigating visitor restrictions. The importance of family presence with dying patients has been well documented (Kristjanson & Aoun, 2004). Families offer vital emotional, spiritual, and physical support for patients nearing death (Sherman, 2019). Furthermore, families help inform goals of care (Curtis et al., 2020); and mitigate language and communication barriers (Martins et al., 2013; Vick et al., 2018). Without their presence, HCPs found themselves having to navigate various challenges on their own, resulting in what they believed to be more time consuming, yet lower quality care. Moreover, in the absence of loved ones, care was further hindered by social distancing practices and wearing PPE, which created multiple obstacles including the inability to touch or to rely on facial expression, and even barriers to physical proximity—undermining fundamental tenants of dignity conserving care (Chochinov, 2002).

With these changes in practice, alternative strategies for communication were used such as virtual care. HCPs expressed concerns adopting virtual care, such as the inability to properly assess medical conditions without a physical examination. Previous research has documented issues regarding patients who lack access and understanding of this technology (Kronenfeld & Penedo, 2021). Several study participants noted end-user technological challenges with virtual platforms for supporting family and patient care. Considering the paucity of data, research is needed regarding the impact of virtual assessments on diagnostic accuracy and illness management as it relates to providing end-of-life care.

An important phenomenon elicited in this study was moral distress. HCPs described many instances of feeling helpless and unable to provide the level of care that they deemed ethically appropriate due to disruptions in patient care and deficiencies in resources. The experience of moral distress during COVID-19 is a well-documented phenomenon among frontline care workers, such as long-term care workers (Reynolds et al., 2022). Moral distress has shown a strong relationship with mental health disorders (Guttormson et al., 2022; Smallwood et al., 2021). Therefore, it is critical for future research to examine the long-term impact of HCP’s moral distress during the pandemic, to identify its prevalence and mitigate mental health fallout.

HCPs described the importance of engaging in self-care practices and seeking additional supports to safeguard their mental health during the pandemic. Many participants reported finding ways to cope by connecting with family or coworkers, taking time off, or accessing mental health supports. Several participants reported the impact on wellbeing was so enormous that they considered leaving the field. These findings highlight the importance of providing adequate support and working conditions for those caring for dying patients during a global pandemic, to ensure the viability, sustainability, and optimal functioning of this vital workforce. Several emerging interventions targeting organizational support were trialed during the pandemic, including online courses, peer support, and direct access to mental health professionals (Albott et al., 2020; Buselli et al., 2021). Organizations managing staff burnout, distress, and staff resignations, should consider the use of similar support options to help mitigate staff burnout and distress, and support research to demonstrate their applications to better support workers.

Strengths of this study include participant recruitment from various hospitals and institutions across Canada, bolstering the generalizability of our findings. Another strength of this study was the duration of recruitment and interviewing, which extended over a 12-month period marked by changing restrictions, COVID-19 surges, and vaccination eligibility. This study also featured a diversity of frontline healthcare providers participants, suggesting outcomes that can be extrapolated across disciplines and locations of care.

However, this study also had several limitations that should be considered. First, we did not collect data on race or ethnicity, which precludes our ability to comment on the salience of those variables. Second, our sampling process required interested participants to reach out to us first, so we are unable to obtain response rates and our sample may be biased in that we likely captured participants who felt strongly about their work experiences during the pandemic. Lastly, although this was a national study, just under half our participants were from Manitoba and most participants identified as female, so experiences across all of Canada and those who identified as male were less represented.

In summary, our findings provide critical insights on the impact COVID-19 had on HCPs providing care to dying patients. While COVID-19 itself was responsible for many deaths, the experience of caring for patients dying of any cause was caught in its wake. Based on our findings, comprehensive pandemic planning must include strategies that not only address optimizing the delivery of end-of-life care but considers ways and means of supporting clinicians across multiple disciplines charged with providing safe—from a public health care prospective—dignity conserving palliative care.

Disclosure statement

All authors have no competing interests to declare.

Additional information

Funding

Research Manitoba