Providing palliative and end-of-life care in long-term care during the COVID-19 pandemic: a qualitative study of clinicians’ lived experiences
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* Sandy Shamon
* Ashlinder Gill
* Lynn Meadows
* Julia Kruizinga
* Sharon Kaasalainen
* José Pereira

## Abstract

**Background:** A disproportionate number of COVID-19-related deaths in Canada occurred in long-term care homes, affecting residents, families and staff alike. This study explored the experiences of long-term care clinicians with respect to providing palliative and end-of-life care during the COVID-19 pandemic.

**Methods:** We used a qualitative research approach. Long-term care physicians and nurse practitioners (NPs) in Ontario, Canada, participated in semistructured interviews between August and September of 2021. Interviews were undertaken virtually, and results were analyzed using thematic analysis.

**Results:** Twelve clinicians (7 physicians and 5 NPs) were interviewed. We identified 5 themes, each with several subthemes: providing a palliative approach to care, increased work demands and changing roles, communication and collaboration, impact of isolation and visitation restrictions, and impact on the providers’ personal lives. Clinicians described facing several concurrent challenges, including the uncertainty of COVID-19 illness, staffing and supply shortages, witnessing many deaths, and distress caused by isolation. These resulted in burnout and feelings of moral distress. Previous training and integration of the palliative care approach in the long-term care home, access to resources, increased communication and interprofessional collaboration, and strong leadership mitigated the impact and led to improved palliative care and a sense of pride while facing these challenges.

**Interpretation:** The pandemic had a considerable impact on clinicians caring for residents in long-term care homes at the end of life. It is important to address these lived experiences and use the lessons learned to identify strategies to improve palliative care in long-term care homes and reduce the impact of future pandemics with respect to palliative care.

A large majority of people living in long-term care homes experience frailty and have multiple comorbidities, which compromise their quality of life and reduce their life expectancy.1,2 In Canada, before the COVID-19 pandemic, 8% to 17% of all deaths occurred annually in long-term care, and the average annual mortality rate in long-term care homes is estimated to be between 27% and 52.3%.3 The median life expectancy of residents in long-term care is 18 months after admission.1,4,5

Despite these high morbidity and mortality rates, numerous studies have identified barriers and gaps related to the provision of palliative care in long-term care homes.6–9 There have been many calls over the years to improve palliative and end-of-life care in long-term care.3,7–11 The gaps were further exposed and accentuated during the COVID-19 pandemic when a disproportionate number of COVID-19-related morbidities and deaths in Canada and worldwide occurred in long-term care homes, particularly during the early waves. This had a major impact on residents, their families and the front-line staff.12,13 It is important to capture and understand these experiences with the goal of addressing ongoing gaps and preparing for future pandemics.

The aim of this study was to explore and better understand the lived experiences of Ontario-based long-term care clinicians with respect to providing palliative and end-of-life care during the pandemic, with the goal of improving palliative care and identifying strategies to mitigate the impact of future pandemics on this area of care in long-term care homes. More specifically, the primary research question was, what are the lived experiences of Ontario long-term care clinicians with respect to providing palliative and end-of-life care during the COVID-19 pandemic?

## Methods

We used a qualitative interpretive descriptive study design, based in the constructivist and naturalistic orientation to inquiry, to gain a broad in-depth understanding of the clinicians’ lived experiences as they provided end-of-life care during the COVID-19 pandemic in long-term care homes.14,15

All participants worked as either nurse practitioners (NPs) or medical doctors (MDs) in long-term care homes in Ontario, Canada, during at least 1 of the first 3 waves of the COVID-19 pandemic. Semistructured interviews with participants were conducted during the early phase of the fourth wave of the pandemic (from August to September 2021).

In 2021, there were approximately 627 long-term care homes in Ontario.16 The long-term care homes in Ontario generally care for frail older residents with multiple comorbidities, including dementia, hence requiring advanced personal and medical care. Their vulnerable health state and the congregate living setting led to rapid spread of SARS-CoV-2 and higher rates of complications and fatality during outbreaks. Clinicians often work as part of a multidisciplinary team in this highly regulated care setting. During the pandemic, stringent visitation restrictions and measures were imposed to prevent and limit the rapid spread of SARS-CoV-2 in this vulnerable population. Additionally, in the early stages and during outbreaks, residents were prohibited from social activities and dining together. By the time of the interviews, the restrictions had been somewhat relaxed, allowing for more regular visitations.17

To ensure anonymity, the location and size of the homes in which the participants worked are not shared in this article.

The Consolidated Criteria for Reporting Qualitative Research checklist was used to report the study.18

### Sampling and recruitment

Purposive and snowball sampling were applied to recruit study participants. An email invitation was sent in July 2021 by the Ontario Long Term Care Clinicians organization to its approximately 300 members composed mainly of physicians and NPs who work in long-term care. The initial email invitation was shared with other nonmember long-term care clinicians, leading to further snowball recruitment of clinicians who worked in long-term care homes during the COVID-19 pandemic. Study information was shared, and participants provided informed consent to participate. Each study participant was given a gift card for the value of Can$25 as an honorarium.

### Data collection procedures

Interviews were conducted by 1 of 3 researchers (A.G., J.K. and S.S., all female researchers with experience in qualitative research methods) using the Zoom virtual communication platform. Data were collected in August and September 2021, 16 months after the pandemic was first declared in Ontario, Canada. Clinicians were asked short demographic questions followed by open-ended questions, using an interview guide (Appendix 1, available at [www.cmajopen.ca/content/11/4/E745/suppl/DC1](http://www.cmajopen.ca/content/11/4/E745/suppl/DC1)). The interview guide was developed by the research team. Team members all have experience in qualitative research, and 2 have clinical experience in palliative care and long-term care (S.S. and J.P.).

Interviewers met after their first completed interview to debrief, ensure consistency in administering the interview questions, and compare transcripts and field notes taken to record observations or nonverbal cues during the interviews. In addition to exploring the clinicians’ experiences, the guide also included a question on potential strategies that could help improve palliative care in long-term care homes. Interviews were audio recorded and transcribed verbatim, then anonymized and entered into Nvivo 2020 to aid data management and analysis. Interviewers continued to debrief with each other and the research team periodically following interviews to ensure consistency in data collection. Recruitment continued until data saturation was reached as determined by consensus of the research team (A.G., S.S., S.K., J.P. and L.M.).

### Data analysis

Data analysis was done using an iterative thematic analysis in which researchers reviewed the transcripts to identify major themes.19 The primary investigator (S.S.) led the initial analysis with support from A.G., and together they completed the analysis and refined the identified themes based on feedback from the other researchers (S.K., J.P., L.M. and J.K.). Team meetings were held periodically to achieve consensus. The research team exercised reflexivity by consciously discussing whether any of their own pre-existing assumptions and experiences were influencing the analysis and how to mitigate this as they analyzed the data. Additionally, the involvement of more than 2 researchers in data analysis allowed for investigator triangulation to further ensure trustworthiness of the data analysis and validity of the study.20

### Ethics approval

The study was reviewed and approved by the Hamilton Integrated Research Ethics Board (no. 13507).

## Results

A total of 12 clinicians (7 physicians and 5 NPs) belonging to various communities of practice were interviewed (Table 1). Interviews lasted from 45 to 90 minutes. Most participants were older than 50 years and had more than 10 years of experience working in the long-term care setting. They came from various geographical regions and long-term care homes. All participants reported additional training or clinical experience in palliative care before the pandemic and felt comfortable with providing end-of-life care in their long-term care practice. Most had participated in Pallium Canada’s Learning Essential Approaches to Palliative Care 2-day course.21 Two had more advanced training and certification of added competency in palliative care from The College of Family Physicians of Canada. Study participants delivered in-person and virtual care during the pandemic.

View this table:
[Table 1:](http://www.cmajopen.ca/content/11/4/E745/T1)

Table 1: 
Demographic characteristics of participants

### Overview of findings

Several themes and subthemes were identified. The main themes were as follows: providing a palliative approach to care, increased work demands and changing roles, communication and collaboration, impact of isolation and visitation restrictions, and impact on the clinicians’ personal lives. Table 2 shows the corresponding themes and illustrative quotations to support each theme.

View this table:
[Table 2:](http://www.cmajopen.ca/content/11/4/E745/T2)

Table 2: 
Themes, subthemes and illustrative quotations

### Providing a palliative approach to care

Three subthemes were identified in this theme: scaling up, preparedness, and the uncertainty of the COVID-19 illness trajectory and prognosis. Participants reported that while the core principles of the palliative care approach did not change, the focus and scale of some aspects were altered considerably, describing the change as “a mass casualty event, except it was a mass palliative care event” (MD6). Discussions about advance care planning and goals of care became more urgent and intense. During outbreaks, a higher demand was placed on providers to prepare residents and families for a possible rapid change in condition given the infection’s high mortality in this population at the time. Early goals-of-care discussions became standard processes within some homes.

The existence of a palliative approach strategy in the home prepandemic, including education, routine discussions about advance care planning and goals of care, and end-of-life order sets and processes, facilitated pandemic preparedness. Staff who had previous training in the palliative approach were more comfortable providing this care, including having difficult end-of-life discussions, recognizing decline in residents’ health, and monitoring and managing end-of-life symptoms.

Providers struggled with the uncertainty related to the presentation of COVID-19 symptoms and unpredictable disease trajectory and prognosis early in the pandemic. One participant described a case where the resident “got really sick overnight and died suddenly” (NP2). These added to the stress of difficult end-of-life discussions and care planning.

### Increased demands and changing roles

Staffing challenges, role changes, and shortages in supplies and resources were reported. Regular duties and staffing levels in long-term care homes were substantially disrupted. Staff who contracted the virus, were exposed to infected people or experienced symptoms, even with unconfirmed SARS-CoV-2 infection, had to self-isolate for up to 2 weeks. These amplified pre-existing staffing challenges and affected the quality of end-of-life care, such as when “there wasn’t enough staff to watch symptoms and to give a PRN [pro re nata, medication taken as needed]” (NP2). There were inadequate numbers of trained staff to initiate care conferences with families, monitor and assess residents, and accompany residents when families were unable to visit in person.

The increased demands led to added work hours and additional roles. Nurses were asked to provide housekeeping, care managers to provide bedside care, and personal support workers (PSWs) or registered practice nurses (RPNs) to bag bodies when funeral home staff were not permitted within the home. Staff, particularly PSWs, took on the role of companion for residents in the absence of their families and “would sit beside them as they were dying. One PSW sang to one of the residents” (NP2).

Some participants who were also medical directors took on increased advocacy work to ensure their homes had access to personal protective equipment (PPE) and supplies. Supply shortages, particularly during the early waves of the pandemic, with PPE, some injectable palliative care medications, oxygen tanks and test kits, added to the providers’ distress and work burden.

In undertaking these role changes and increased responsibilities, participants also expressed pride in what they and their colleagues had done and accomplished under such trying circumstances.

### Communication and collaboration

Increased communication with colleagues and residents’ families was described. This was often conducted virtually by telephone or video conferencing. Clinicians tried their best to provide updates to families, increased having goals-of-care conversations, and facilitated virtual visits between residents and families as frequently as possible, particularly if they were actively dying, despite staffing shortages and amid severe visiting restrictions. Some participants described providing families their personal telephone numbers or emails to facilitate connection, reassurance and psychosocial support as families expressed “feel[ing] so guilty about not going in” (NP2).

Increased communication demands often required the presence of staff at the bedside, which was challenging given the staffing shortages and lack of continuity necessary in palliative care. Participants expressed the importance of increased communication and collaboration within the home’s leadership. One participant highlighted “even as the medical director for the 2 homes … we were always working together with the director of care, with the executive director to kind of plan if things were to get bad” (MD2). Occasionally, external palliative care teams and outreach nurses helped to facilitate communicating with families when staff were overwhelmed. A collaborative team effort within long-term care homes with increased sharing of responsibilities emerged to optimize care.

Communication and collaboration with professionals and entities external to the long-term care home also increased, both virtually and in person. Some participants collaborated closer with hospitals and regional geriatrics and palliative care specialists. Some also connected with long-term care communities of practice such as the Ontario Long Term Care Clinicians, to apply emerging best practices amid rapidly changing clinical guidelines and public health directives.

While clinicians largely described supportive and constructive working relationships with public health, external hospitals and consultants, some reported suboptimal experiences. These occurred when messaging was inconsistent and external teams sometimes did not understand the regulated long-term care environment or have any experience in it, leading to unhelpful advice and poor takeover experiences in some cases. External clinical consultants who were more collaborative and familiar with the long-term care setting greatly facilitated care, including end-of-life care.

### Impact of isolation and visitation restrictions

Restrictions on family visitations and social activities, and physical distancing, prevented usual palliative care processes. Clinicians witnessed residents experiencing hastened deterioration, cognitive decline, depression, feelings of hopelessness and lonely deaths as a result of these restrictions. The use of PPE accentuated the sense of isolation, loneliness and reduced human touch. Participants often sounded emotional as they reported witnessing a resident “fade away” and feeling “heartbroken” because of the social isolation more so than the COVID-19 illness.

Participants also reported witnessing increased expression of anxiety and guilt among families because of their inability to be at their loved one’s bedside. To help mitigate resident loneliness, staff members often became like family, and tried their best to spend additional time at the resident’s bedside to provide greater comfort and connectedness during the last hours of life.

Usual rituals that facilitated healthy grief at the time of death, such as conducting honour guards for deceased residents and remembrance events, were mostly halted, further impairing healthy mourning for residents, families and staff alike. One participant expressed concern for “complicated grieving after this, because there wasn’t the ability to have closure and visiting at the beside” (NP2).

Participants expressed concern about the continuation of strict visitation policies, stating the importance of having the presence of loved ones at the time of death as a core element in the philosophy of palliative care.

### Impact on clinicians’ personal lives

Participants reported powerful feelings of emotional trauma and guilt, resulting in burnout and psychological distress. These emotions were both experienced by clinicians and witnessed in colleagues. During times of outbreaks, some clinicians provided care around the clock, including evenings and weekends. One clinician stated, “I never turned my phone off for the first 9 months” (MD5). This accentuated fatigue and affected their personal and family lives, leading to feeling “stretched to the point of breaking” (MD3).

Participants described feelings of helplessness and distress at times, describing the shock of “support[ing] as many deaths in a year as [they] did” (NP4). In one case “about 40% of residents … all died within 2 and a half weeks” (MD6). Clinicians who had to send SARS-CoV-2-positive residents to local hospitals during outbreaks, following an order to decant residents in overstretched homes, were internally conflicted and felt that they were abandoning their residents who “were close to dying … and may even die on the transfer to the hospital” (NP2), but “the decision was made from the administrative point” (NP2) and the clinicians felt they had little control over some of these decisions.

Some described frustration with the health care system and media for not addressing the impact of the pandemic on long-term care workers. They felt that their own emotional trauma and needs were and continue to be ignored, stating as an example the grief associated with losing many residents they knew for years over a short period.

## Interpretation

In this study, physicians and NPs working in long-term care homes in Ontario, Canada, described a spectrum of experiences and effects, both challenging and rewarding, related to providing palliative and end-of-life care during the COVID-19 pandemic. Foremost among these were physical and emotional exhaustion resulting from increased work demands, attending to high levels of suffering caused by isolation and unprecedented numbers of deaths, altered care delivery routines, and shortages of equipment and human resources. These, along with uncertainty, fear, and frequently changing public health directives and messaging led to burnout and moral distress.

Some of the study findings are similar to those reported in previous publications across several countries.22–28 The heightened distress of health care professionals caused by the COVID-19 pandemic, for example, has been reported by others.29,30 However, to our knowledge, the previously published studies did not describe detailed accounts and experiences of long-term care clinicians working and providing end-of-life care in long-term care homes. This is important as experts call for the inclusion of care provider experiences in health care reform.31 The assistance of military and hospital personnel and consultants was appreciated. However, lack of experience with and understanding of the highly regulated long-term care setting and the absence of effective leadership on the ground was an impediment to quality care. Perception by participants that some residents declined and “faded away” because of isolation rather than COVID-19 is a finding that has not previously been reported to our knowledge.

In this study, long-term care staff demonstrated innovation and creativity in their response to the pandemic. This, to some degree, has been described in other care setings.23,32 Study participants and colleagues made personal sacrifices to help their residents and long-term care homes while dealing with their own distress. The ability of long-term care staff to adapt to the extraordinary demands, introduce improvements, and find meaning and fulfillment in their work has been identified as psychological capital, which is characterized by hope, optimism, resilience and self-efficacy.33,34

Importantly, our study highlights strategies to improve palliative care and help mitigate the impact of similar pandemics in long-term care homes in the future. These include training all long-term care staff with core skills in palliative care, fostering a culture that embraces the philosophy of palliative care, effective communication and multidisciplinary collaborations, and leadership that promotes the integration of quality palliative care and related clinical tools and guidelines. Practices and processes that promote an effective palliative approach should include early discussions about advance care planning and goals of care, routine symptom assessment, grief and bereavement resources, and ensuring access to specialized palliative care teams with long-term care experience to provide additional consultation, education and quality improvement support when needed. In our study, long-term care homes that had previously established these palliative approach processes managed better than those that did not. These strategies have previously been emphasized by experts and researchers in the field.3,7,10,28,32,35–37

### Limitations

We recognize several limitations of the study. The study did not include PSWs, RPNs, registered nurses or other long-term care staff. It did not explore the experiences of residents and families. The ages of study participants were skewed toward more mature clinicians. This, however, may arguably be representative of the clinicians who currently tend to work in and practise long-term care medicine. The participants all had some prior palliative care training, and this may have affected their experiences. Since participation in the study was voluntary, alternative perspectives of those with different experiences may not have been fully captured.

### Conclusion

Providing palliative and end-of-life care to residents in Ontario long-term care homes during the COVID-19 pandemic, especially during the early waves, had a major impact on clinicians and staff in those homes and affected their work and personal lives in many ways, both negatively and positively. Notwith-standing this impact, clinicians were able to demonstrate collaboration and innovation, introduce improvements, and find meaning and pride in their work. Strategies to address their burnout and collective trauma and grief are needed. It is important to identify and implement strategies to improve palliative care in long-term care homes and reduce the impact of future pandemics with respect to palliative care.

## Acknowledgements

The authors thank Ashwak Rhayel and Yvonne Mbinda for their contribution to this project by conducting background research and their role as research assistants with the Division of Palliative Care, Department of Family Medicine, McMaster University.

## Footnotes

*   **Competing interests:** Sandy Shamon is a volunteer board member and vice president with Ontario Long Term Care Clinicians, a not-for-profit organization with the vision “All Ontarians in long-term care will receive excellent care.” No monetary compensation is provided for her role in the organization. No other competing interests were declared.

*   This article has been peer reviewed.

*   **Contributors:** Sandy Shamon contributed to early inception and formulation of the study purpose, participated in study design alongside methodology experts, conducted interviews and data collection as well as the final data analysis, interpretation and writing of the final manuscript and revision. Ashlinder Gill assisted in coordinating and organizing the study to completion, from ethics approval, recruitment, conducting interviews and data collection, to data analysis and writing of the final manuscript, in particular the results section. Lynn Meadows participated in study design, ensuring sound qualitative methodology was followed during data collection and throughout the data analysis, and contributed to writing and approving the final manuscript and revision. Julia Kruizinga actively participated in all stages of the study since inception and design, conducted interviews and gathered data, and contributed to editing and approval of data analysis and the final manuscript. Sharon Kaasalainen contributed to early study design, data analysis and interpretation and review of the final manuscript. She worked closely with coauthor Julia Kruizinga as her thesis supervisor. She was actively involved in writing the revision manuscript. José Pereira supported the study from early inception, and contributed to study design and data analysis. He particularly contributed to reviewing, editing and approving the final and revised manuscript. All authors gave final approval of the final version to be published and agreed to be accountable for all aspects of the work.

*   **Funding:** This study was funded and supported by the Division of Palliative Care, Department of Family Medicine at McMaster University.

*   **Data sharing:** Given the personal and private nature of the interviews, which may easily identify participants, data will not be available for sharing.

*   **Supplemental information:** For reviewer comments and the original submission of this manuscript, please see [www.cmajopen.ca/content/11/4/](http://www.cmajopen.ca/content/11/4/) E745/suppl/DC1.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4.0) licence, which permits use, distribution and reproduction in any medium, provided that the original publication is properly cited, the use is noncommercial (i.e., research or educational use), and no modifications or adaptations are made. See: [https://creativecommons.org/licenses/by-nc-nd/4.0/](https://creativecommons.org/licenses/by-nc-nd/4.0/)

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