Article Text

Original research
Impact of COVID-19 on care at the end of life during the first months of the pandemic from the perspective of healthcare professionals from different settings: a qualitative interview study (the CO-LIVE study)
  1. Masha S Zee1,
  2. Lotje Bagchus1,
  3. Yvonne N Becqué2,
  4. Erica Witkamp2,3,
  5. Agnes van der Heide3,
  6. Liza G G van Lent4,
  7. Anne Goossensen5,
  8. Ida J Korfage6,
  9. Bregje D Onwuteaka-Philipsen1,
  10. H Roeline Pasman1
  1. 1Department of Public and Occupational Health, Amsterdam UMC Locatie VUmc, Amsterdam, Noord-Holland, Netherlands
  2. 2Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, Netherlands
  3. 3Department of Public Health, Erasmus MC University Medical Center, Rotterdam, Zuid-Holland, Netherlands
  4. 4Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, Zuid-Holland, Netherlands
  5. 5University of Humanistic Studies, Utrecht, Netherlands
  6. 6Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, Netherlands
  1. Correspondence to Masha S Zee; m.zee{at}amsterdamumc.nl

Abstract

Objectives The objective of this study is to better understand how the COVID-19 outbreak impacted the different domains of the palliative care approach to end-of-life care from the perspective of healthcare professionals (HCPs) from different professions, working in different settings during the first months of the COVID-19 outbreak in the Netherlands.

Methods An in-depth qualitative interview study among 16 HCPs of patients who died between March and July 2020 in different healthcare settings in the Netherlands. The HCPs were recruited through an online survey about end-of-life care. Maximum variation sampling was used. Data were analysed following the principles of thematic analysis.

Results Several aspects impacted the quality of the palliative care approach to care at the end of life. First, COVID-19 was a new disease and this led to challenges in the physical domain of end-of-life care, for example, a lack of knowledge on how to manage symptoms and an unreliable clinical view. Second, the high workload HCPs experienced impacted the quality of end-of-life care, especially in the emotional, social and spiritual domains, since they only had time for urgent, physical care. Third, COVID-19 is a contagious disease and measures taken to prevent the spread of the virus hampered care for both patients and relatives. For example, because of the visiting restrictions, HCPs were not able to provide emotional support to relatives. Finally, the COVID-19 outbreak also had a potentially positive impact in the longer term, for example, more awareness of advance care planning and the importance of end-of-life care that includes all the domains.

Conclusion The palliative care approach, which is key to good end-of-life care, was often negatively influenced by the COVID-19 pandemic, predominantly in the emotional, social and spiritual domains. This was related to a focus on essential physical care and prevention of the spread of COVID-19.

  • COVID-19
  • Palliative Care
  • End-of-life Care
  • Quality of Care
  • Qualitative Research

Data availability statement

Data are available upon reasonable request. The data used and/or analysed during the current study are available from the corresponding author on reasonable request.

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Strengths and limitations of this study

  • This study describes a broad range of perspectives since it includes healthcare professionals from all care settings and different professions who cared for patients with COVID-19 and patients with non-COVID-19.

  • Respondents were eager to share their experiences despite the fact that the interviews were held via (video) calls.

  • Despite the fact that five researchers interviewed respondents, uniformity was guaranteed by continuously discussing the topic list and findings.

  • We cannot say with certainty that data saturation was reached, since the COVID-19 situation was so complex and kept changing so quickly.

Introduction

The COVID-19 pandemic confronted the world with an unknown disease, which had an impact on care in all healthcare settings. To limit transmission and reduce mortality and morbidity from COVID-19, the WHO published guidelines on what public health and social measures should be taken.1 These measures included personal protective measures, such as wearing masks, and physical distancing measures, such as maintaining distance in public spaces or workplaces. As other countries, the Netherlands was also confronted with high numbers of patients with COVID-19 and excess mortality due to COVID-19, and most of the above-mentioned measures were implemented.2 3

The situation surrounding COVID-19 affected care at the end of life for both patients and their relatives during the first months of the pandemic.4 Measures such as visiting restrictions and keeping a physical distance changed human contact inherently and influenced the way end-of-life care was provided.5–7 Furthermore, because of the high number of patients with COVID-19, there may have been less time for emotional and spiritual support for patients and their relatives during a period where this support was very much needed.4–6

Good-quality end-of-life care requires a palliative care approach that focuses on the quality of life of patients and their families. It aims to provide person-centred care that not only considers the patient’s medical condition but also takes a more holistic approach, looking at the psychological, social and spiritual domains of care as well.8 Special attention is paid to specific needs and preferences in these domains and support is provided not only to patients but also to their relatives; this includes bereavement counselling.8

It is likely that these domains of the palliative care approach were endangered during the COVID-19 pandemic. The aim of this study is to better understand how the COVID-19 outbreak impacted the different domains of the palliative care approach to end-of-life care from the perspective of healthcare professionals (HCPs) working in different healthcare settings during the first months of the COVID-19 outbreak in the Netherlands.

Methods

Design, setting and participants

An in-depth qualitative interview study was conducted among HCPs caring for patients who died between March and July 2020 in different healthcare settings in the Netherland as part of the CO-LIVE study. CO-LIVE is a mixed-methods study of the experiences of both bereaved relatives and HCPs during the COVID-19 pandemic. Participants were recruited through an online survey on the last days of life of patients who died during the first wave of the COVID-19 outbreak. This survey was distributed via relevant HCP organisations, palliative care networks and organisations, volunteer organisations and personal contacts throughout the Netherlands.9 Maximum variation sampling was used in the group of participants who were interested in taking part in an interview. Variation was sought in setting, profession and how HCPs qualified the death of the patient about whom they filled in the survey (both positive and negative qualifications). Potential respondents were approached via e-mail. Since nursing assistants working in nursing homes were under-represented in the survey, two were recruited via our own network. Eventually, 16 HCPs were interviewed: nine nurses, two nursing assistants, one coordinator in a hospice and four physicians. Four participants worked in a special COVID unit in a hospital, two in an intensive care unit (ICU), five in a nursing home, three in a hospice and two in home/community care (table 1). Some participants had cared for patients with COVID only, while others had also cared for patients with non-COVID. We followed the standards for reporting qualitative research.

Table 1

Characteristics of the participants

Patient and public involvement

Patients and the public were not involved in the design and execution of this study.

Data collection

Five researchers conducted the interviews (MSZ: 2, LB: 8, YNB: 4, EW: 1 and H.RP: 1). Because of COVID measures, all interviews were held using (video) calls. The interviewers used a topic list that included questions about the responses as given in the survey and questions about new experiences (online supplemental file 1). The interviews were conducted in Dutch, lasted between 25 min and 70 min and were audio-recorded.

Data analysis

The interviews were transcribed verbatim and analysed using the qualitative data analysis software MAXQDA (2020). We followed the principles of thematic analysis based on a phenomenological approach, focusing on the lived experiences of the respondents.10 11 First LB and H.RP went through the transcripts and made summaries, which were discussed with all interviewers and another member of the research group (BO-P). After becoming familiar with the data by reading the transcripts, MSZ coded the data. The analyses were discussed with all members of the research group and on multiple occasions with the different interviewers. Thereafter, MSZ, LB, BO-P and H.RP sorted the codes into groups to develop overarching themes (online supplemental file 2). During the process of sorting the codes into themes, MSZ, LB, BO-P and H.RP continuously compared and discussed their decisions. Finally, appropriate quotes were selected by MSZ and LB, translated by a professional translator and checked by a second professional translator. The research group consisted of researchers with different backgrounds (health sciences, medical anthropology, nursing, sociology, psychology and medicine).

Results

The COVID-19 outbreak led to an impactful and unique situation for healthcare, and HCPs stated that it affected care at the end of life. This was the case for HCPs of all disciplines and for all care settings, although sometimes in different ways.

Several themes were identified in the interviews that were characteristic for this impactful and exceptional situation and affected the quality of end-of-life care, mostly negatively, during the first months of the COVID-19 pandemic. These themes were: COVID-19 as a new disease, the disease leading to a higher workload for HCPs, the disease being contagious and the long-term positive impact of the COVID-19 pandemic on end-of-life care.

New disease: lack of knowledge about how to manage symptoms

In the first months of the COVID-19 outbreak, little was known about the course of the disease, the prognosis, treatment and symptom relief. This led to difficulties in the physical domain of end-of-life care. HCPs said that their ‘clinical view’ was not reliable anymore because the disease course for COVID-19 patients was unpredictable (table 2, quote 1). In some cases, the patient unexpectedly deteriorated very quickly, making it difficult to take anticipatory action, for instance, to inform family members in good time. Furthermore, HCPs said it was hard to relieve symptoms for some dying patients because existing treatments for similar symptoms in other diseases had little or no effect for patients with COVID-19 (table 2, quote 2).

Table 2

Quotes—new disease and high workload

High workload: lack of time and staff for good end-of-life care

The COVID-19 outbreak led to a great influx of patients with COVID-19 on top of the regular patients, resulting in a high workload for HCPs, especially on the ICU and COVID wards in hospitals. Besides, HCPs in nursing homes also had a higher workload since they had to isolate residents with COVID-19 from residents without COVID-19. This created more wards than usual, which then had to be staffed using the same number of HCPs. Furthermore, because of a lack of knowledge on how to prevent COVID-19 infections, many HCPs mentioned how (especially in the first months of the pandemic) measures and rules about visits or protective equipment were unclear or kept changing. Being updated on the rules took a lot of time, creating a higher workload. These aspects were mentioned by HCPs in all settings, including HCPs who had not cared for patients with COVID-19.

The great influx of patients adversely affected the quality of end-of-life care. HCPs mentioned degrading situations for patients on crowded wards with little privacy, and work that felt like a production line (table 2, quote 3). Some HCPs mentioned that they only had time for the essential, physical care, but not enough time for care in the emotional, social and spiritual domains (table 2, quote 4). However, HCPs (especially in ICUs) also mentioned some difficulties in the physical domain. They said that, because of a lack of staff, HCPs from other disciplines or wards helped them. However, not all of these new colleagues had the right skills or experience and this sometimes negatively impacted the quality of physical care (table 2, quote 5). Furthermore, HCPs mentioned that medication safety was an issue because of the time pressure.

Because of the shortage of skilled staff, HCPs’ schedules were sometimes unclear or were constantly changing. Therefore, HCPs saw a lot of different patients and did not see particular individual patients as frequently as usual. A respondent mentioned that this led to poor continuity of care because individual HCPs were not as involved with their patients and as well-informed about them as usual, which made it difficult to be aware of personal needs and preferences (table 2, quote 6).

Due to the staff shortage and higher workload, there was also less time for another important part of the palliative care approach: supporting relatives. HCPs said that they could not spend as much time on supporting the relatives as they were used to and that this was unsatisfying for them (table 2, quote 7). In some cases, HCPs in the ICU were limited in the time they could give relatives to say goodbye to their loved ones (table 2, quote 8).

Contagiousness: preventative measures hampered good end-of-life care

In healthcare settings, various measures were taken to prevent the spread of COVID-19, such as visiting restrictions, keeping physical distance and wearing personal protective equipment (PPE). There was little difference between patients with COVID-19 and patients with non-COVID-19 regarding the impact of these measures on care, since most measures applied to everyone. HCPs stated that care giving at the end of life was hampered due to the priorities that government and the healthcare service had when dealing with COVID-19. They said that preventing the spread of the virus seemed more important than the quality of end-of-life care and that this impacted, in particular, on the emotional and spiritual aspects of care (table 3, quote 1).

Table 3

Quotes—contagiousness

Limited family visits and goodbyes

All HCPs said that restrictions were placed on family visits and goodbyes to a greater or lesser extent, which impacted end-of-life care for both patients and their relatives. There were restrictions on the number of people who were allowed to visit patients, the number of visits per day and the amount of time relatives were allowed for visiting a patient. Visiting restrictions varied between settings; HCPs in hospitals and, especially, nursing homes mentioned that these restrictions were very strict and that it was difficult to deviate from them. In homecare, patients or HCPs could decide themselves on what to do about visits (restrictions).

According to the HCPs, the restrictions on family visits and goodbyes impacted the patients greatly, mostly in the psychological and social domains. Some participants mentioned that dying patients could not see everyone they wanted to see and that some patients were completely alone in the last days of their life (table 3, quote 2). One nurse described a case where a patient did not want to die in a hospital setting because of the visiting restrictions. However, the sudden transfer to her homeled to a chaotic last few days of life. Furthermore, the visiting restrictions affected the extent to which HCPs could get to know their patients and, therefore, impacted end-of-life care. If unconscious or very ill patients were not able to talk, care became less personal because no family was around to share the patients’ preferences and wishes (table 3, quote 3). However, a nurse working in homecare said that the restrictions were used as a good excuse when patients did not want a specific person to visit them and say goodbye (table 3, quote 4). In some cases, there were new digital ways for patients to contact their relatives (eg, video calls) and HCPs were mostly positive about the usage of these resources, although they were not a perfect substitute for the physical family visits.

When providing good end-of-life care in all domains of palliative care, the contact and connection between HCPs and patients and their relatives are really important. Because of visiting restrictions, HCPs did not see relatives as much, making it difficult for HCPs to provide emotional support to families (table 3, quote 5). Even if the distance could be bridged using digital communication, HCPs felt that they could not support the relatives sufficiently from a distance (table 3, quote 6).

Physical distance between HCPs and patients and their relatives

Physical distance hampered the care and connection in all settings for patients with and without COVID-19. Some HCPs felt detached from the patient, mostly because they could not touch the patient apart from when they performed medical procedures. They explained that touching patients is an important aspect of emotional support, which is part of the psychological domain of care (table 3, quote 7). In some cases, spiritual counsellors were not allowed to be physically present with patients anymore and this impacted the spiritual domain of end-of-life care (table 3, quote 8). Furthermore, when a patient had died, HCPs mentioned that they were not allowed to take care of the deceased patient to prepare them for when relatives came to say goodbye (table 3, quote 9). Finally, the physical distance also made it more difficult for HCPs to provide emotional support to relatives because they could not get near to the relatives or touch them to console them (table 3, quote 10).

Feelings of detachment due to PPE

Another measure that created distance between HCPs and patients and their relatives was the PPE HCPs needed to wear under certain circumstances. An HCP described how they felt it was degrading for patients to have care provided by someone who was unrecognisable due to wearing PPE (table 3, quote 11). Furthermore, some HCPs said that it was scary for patients with dementia or psychological problems to be cared for by staff wearing PPE, and this, therefore, hindered care in the psychological domain (table 3, quote 12). However, HCPs also said that they were happy to be wearing PPE because it allowed them to touch their patients and to come closer. Some HCPs had experienced a shortage of PPE or had to economise on PPE to prevent a shortage and this made HCPs more reluctant to come close to patients because that would cost extra PPE, which hindered care in all domains (table 3, quote 13). On wards for only patients with COVID, it was not necessary to change the PPE all the time, which was seen as an advantage of working in such wards.

Positive impact of the exceptional situation in the long term

Besides direct, mostly negative impacts, respondents also mentioned that the situation potentially had a positive impact on future end-of-life care. Due to the danger of a shortage of beds, there was more awareness of the importance of talking about potentially futile treatments with patients and of advance care planning (ACP) (table 4, quote 1 and quote 2). Furthermore, there was more awareness of the persistent shortage of healthcare staff, and discussions were started about a better staffing policy for the future. This is important because a palliative approach to good end-of-life care in all domains requires staff to devote the necessary time and attention. Finally, HCPs said that the pandemic had reminded them of how important appropriate and individualised care is at the end of life, and that this care entails much more than physical care only (table 4, quote 3 and quote 4).

Table 4

Quotes—long-term positive impact

Discussion

This interview study, held in the first months of the COVID-19 pandemic, shows that care at the end of life was seriously hampered by the exceptional situation, which led to a combination of challenges in all domains of end-of-life care: uncertainty about how to best treat patients with this unknown disease, a high workload for HCPs and strict preventive measures to prevent the spread of this contagious disease. However, the situation also potentially had a positive long-term impact on care, as it raised awareness of the importance of talking about ACP and potentially futile treatments and of the importance of good care at the end of life within all the domains.

Strength and limitations

A strength of this study is the inclusion of HCPs from all care settings, with different professions who cared for patients with COVID-19 and patients with non-COVID-19. This means we can show that the situation affected all HCPs and we can provide a broad range of perspectives. Because of the COVID-19 measures, we held all interviews via video calls. This could have made it more difficult to build rapport with respondents and thereby have led to less in-depth information from the interviews. However, we found that respondents were eager to talk about their experiences and we do not feel that these interviews were less in depth than the face-to-face interviews we were used to conducting.

Because the situation with the COVID-19 pandemic was hectic and unique, we started with five researchers interviewing respondents. Each interviewer did one interview, after which they discussed the topic list together to see if it was sufficient and if adjustments were needed. By continuously discussing the topic list and findings, they were able to guarantee uniformity.

No new topics came up during the last interviews in this study when compared with the earlier interviews. However, since the COVID-19 situation was so complex and unique in every healthcare setting and kept changing so quickly, we cannot say with certainty that we reached saturation.

Psychosocial and spiritual care for patients and relatives were the domains most severely affected in all care settings

The situation impacted the care in all domains. This was already shown by our quantitative study among HCPs9; however, the in-depth interviews have provided a better understanding of this finding. In all settings and for both patients with COVID-19 and non-COVID-19, the impact varied in degree from an annoyance (eg, wearing masks meant patients could not hear staff very well) to care that fell short (eg, there was no time to support the family or to get to know the patient) to care that was degrading or inhumane (eg, patients dying without relatives being present).

The fact that COVID-19 was a new, unknown disease seems to have mostly impacted care in the physical domain. However, the other themes related predominately to the psychosocial and spiritual domains of care. The high workload hindered physical care, but had an even greater effect on care in the psychosocial and spiritual domains (for both patients and relatives), since there was not enough staff or time and physical care was prioritised. The preventative measures taken impacted all the domains of care in different ways. It is notable that a social intervention such as visiting restrictions not only affected the social domain of end-of-life care but also personalised care in the psychological domain. Similarly, the physical distancing measure had an impact on all domains, including spiritual care.

The results of the current study echo the findings of studies from different countries, in which several aspects of end-of-life care during the first months of the COVID-19 pandemic were studied.12–17 Similar to our findings, they too found staff believed that they fell short in different domains of palliative care at the end of life due to the lack of physical contact, having to wear PPE and visiting restrictions. Other studies also showed that HCPs in different settings found it difficult to provide good emotional support to families due to limited family visits and not being able to touch them, in combination with digital communication not being satisfactory.14 16 18 19

As in our study, HCPs and bereaved relatives in other studies emphasised the importance of holistic care (in all domains of the palliative approach) and mentioned that there was often a focus on physical care rather than the psychosocial and spiritual domains.12 20 21 Bradshaw et al described how the measures to prevent the spread of the virus hindered HCPs in providing person-centred and holistic care in accordance with their professional values.22

COVID-19 provided chances to improve care at the end of life

Our study presents findings about the first months of the COVID-19 pandemic. Since then, there were a lot of changes that could have improved or changed the care in all domains at the end of life during the pandemic. For example, we learnt that the lockdown of nursing homes was very harmful for the residents, and as a consequence, measures became less restrictive. However, studies of the experiences of HCPs after the first year of the pandemic are still scarce at present. We do not know if the problems highlighted in our study or the studies mentioned above persisted after the first months of the pandemic, despite the greater knowledge about the disease (and the prevention of the disease), the less restrictive measures and the end to PPE shortages. We do know that new problems arose, such as more aggression among visitors, but most importantly, a shortage of healthcare staff (due for example to long COVID and burn-out), which is still very much a problem. Research on the later phases of the pandemic will probably shed more light on this.

In our study, we found that HCPs thought that the pandemic could have a long-term positive impact on end-of-life care. Despite the challenges mentioned earlier, we believe that the pandemic provides chances to improve care at the end of life. The outbreak showed that well-qualified nursing staff are essential for good end-of-life care. This appreciation may lead to an awareness of the need for good education in palliative and end-of-life care in all care settings, better working conditions for nurses and, consequently, more nursing staff in the future.

Another potentially positive effect that was mentioned is the increased attention paid to weighing the pros and cons of medical treatment for frail patients and the increased awareness of the importance of ACP and focussing on patients’ individual needs and preferences. In the Netherlands, this resulted in the development of national guidance for ACP that was supported by the relevant Dutch professional and scientific organisations.23 Bradshaw et al discussed how HCPs are now involved more often in ACP and are more involved in advising others about ACP in response to the pandemic.24

Finally, HCPs stressed the importance of psychosocial care and the value of involving relatives at the end of life. This may provide fertile ground for efforts to improve palliative care, by, for example, promoting consulting palliative care teams or giving HCPs palliative care vocational training.

Conclusion

The palliative care approach, which is key for good care at the end of life, was often negatively affected in the first months of the COVID-19 outbreak, and this had a serious adverse impact on patients and relatives. The emotional, social and spiritual domains of care were predominantly affected, which was related to an emphasis on essential physical care and prevention of the spread of COVID-19. Negative effects could be limited when professionals felt they had room to adapt the rules and measures in individual cases. On the positive side, the pandemic and the restrictive measures shed light on the importance of good end-of-life care in all domains of the palliative care approach of multidimensional care at the end-of-life. These lessons can potentially improve care at the end of life in the future.

Data availability statement

Data are available upon reasonable request. The data used and/or analysed during the current study are available from the corresponding author on reasonable request.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants but The Medical Ethics Committee Erasmus MC of Rotterdam, The Netherlands, assessed that the rules laid down in the Medical Research Involving Human Subjects Act, do not apply (MEC-2020-0254), exempted this study. Participants gave informed consent to participate in the study before taking part.

Acknowledgments

We would like to thank all the participants for their time and their stories. We also thank the organisations that helped with the recruitment of participants for the questionnaire.

References

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • Contributors MZ, LB, YB, EW, AH, LL, AG, IK, BOP and RP contributed to the design of the study. Interviews were conducted by MZ, LB, YB, EW and RP. Analysis was done by MZ, LB, RP and BOP and discussed with YB, EW, AH, LL, AG and IK. Quotes were selected by MZ and LB. MZ drafted the manuscript. MZ, LB, YB, EW, AH, LL, AG, IK, BOP and RP provided critical comments on drafts of the manuscripts and approved the final manuscript. MZ acts as guarantor.

  • Funding This work was supported by ZonMw (project number: 844001803).

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.