This longitudinal study measures signs of distress of healthcare providers (HCPs) who provided end-of-life care during the initial 18 months of the COVID-19 pandemic. Although reported distress was highest in the first period, during the first wave of COVID-19 pandemic, HCPs reported signs of distress in all four time periods. Being more stressed than usual and being regularly exhausted were the most common signs of distress. HCPs working in nursing homes and hospitals were more likely to experience signs of distress, compared to HCPs working in hospice facilities, during the whole period of 1.5 years. When HCPs were restricted in providing post-death care, they were more likely to feel more stressed than usual and find their work more often emotionally demanding.

Throughout the first 1.5 year of the pandemic gradually less HCPs experienced signs of distress, to a time point where there was a significant decline from the beginning of the pandemic, except for exhaustion. At all time points during the 18 months of our study, approximately four out of ten HCPs experienced exhaustion. This percentage applies to HCPs of all settings, but our GEE analysis shows differences between settings. Compared to HCPs in hospice facilities, HCPs in hospitals (OR 3.90) and in nursing homes (OR 3.92) were more frequently regularly exhausted. Therefore, the percentages of HCPs experiencing exhaustion is even higher in these specific settings compared to the overall average. A Canadian study among nursing staff in hospitals during the pandemic confirms the high exhaustion rate over the course of the pandemic in hospitals, reaching almost 60% in the spring of 2021 [18].

Despite a decrease in the percentage of most signs of distress over time, with the exception of exhaustion, still 19% (up unto 42%) of HCPs experienced at least one sign of distress 1.5 years after the onset of the pandemic. To understand the considerable prevalence of experiences of distress and increased support needs of HCPs related to end-of-life care during and after the pandemic, comparison to experienced distress before the pandemic is important. In two specific questions included in our research, we already asked respondents to compare their well-being to the period before the onset of the pandemic, so we do know respondents were more stressed and needed more emotional support. Unfortunately, studies on distress among Dutch HCPs in palliative care are scarce and comparison on distress is difficult. Regarding exhaustion, a study performed just before the pandemic shows that around 8% of providers had high to very high exhaustion levels, while 55% scored at a medium level [2]. However, it is difficult to draw conclusions about differences between exhaustion levels before and during the pandemic based on this study and the current study, because of the variation in outcome measures.

Our results show that even when most restrictions were lifted and the number of COVID-19 cases declined, many HCPs in our study still experienced distress to some extent. Since prolonged emotional and interpersonal stress on the job can lead to burnout [19], even after the pandemic HCPs may be susceptible to developing a burnout because of what they endured during the pandemic. This might also challenge the health care systems given the current and projected shortages of staff. A review on experiences of women in healthcare highlights the importance of recognizing that women's well-being was particularly affected during the pandemic. Therefore, a gender-specific approach is important in addressing the mental health issues of healthcare providers during a health care crisis [20].

For all signs of distress, HCPs in hospitals and nursing homes were more likely to experience distress compared to nurses in hospices. This could be attributed to notable differences in COVID-19 infection prevention measures and their application in various settings. We know from another study that HCPs working in hospitals and nursing homes were less flexible to deviate from those restrictions and make individual decisions for their patients and shape their caregiving approach compared to HCPs in home care and hospices [1].

Healthcare delivery deviated from the norm during the first 18 months COVID-19 pandemic, since HCPs were confronted with restrictions. This study illustrates that especially in the initial two periods, the shortage of PPE and the inability to provide post-death care impacted the well-being of HCPs.

A Brazilian study also identified an association between emotional distress and insufficient access to PPE during the initial months of the pandemic [21]. Various reasons could account for this. First, a shortage of PPE can lead healthcare providers to be more concerned about their own health, as well as the well-being of their loved ones and patients [12, 22, 23]. Furthermore, other studies indicate that insufficient PPE can compel HCPs to alter their caregiving approach, necessitating choices in patient contact moments [1, 2, 24]. Each interaction consumes PPE, prompting decisions such as refraining from in-person visits to conserve resources.

Regarding post-death care, HCPs faced limitations in delivering care according to standard practices, as protocols prohibited actions like taking care of the bodies of the deceased patients, as is also seen in other studies [1, 12, 25]. Part of post-death care involves the ritual surrounding the passing. In a study on post-death care, nurses express the importance of honoring and showing respect for the deceased in this manner [26]. Furthermore, providing post-death care also allows HCPs to say goodbye to their patients [26] and restrictions in providing post-death might hinder this process.

Both factors share a common element that manifested in various ways during the pandemic: the inability to provide care as healthcare providers desired. Both the shortage of PPE and the restrictions in providing post-death care can lead to healthcare providers delivering different care than they want to. This misalignment may not always align with their professional moral values and therefor may cause moral distress. In our study, we did not directly inquire about moral distress. However, existing literature indicates a connection between COVID-19-related care restrictions and their impact on the emotional well-being of healthcare providers [11, 27].

Factors that did not contribute to distress in our study include visiting restrictions. One plausible explanation could be the exploration of alternative means to facilitate contact between patients and their loved ones, such as video calling, thereby minimizing the impact on the well-being of healthcare providers. Additionally, other studies suggest that, in certain situations, visit restrictions provided some HCPs with a sense of relief, as they had more time for patients themselves, since they spent less time on attending to the needs of the patient’s relatives.

Moreover, the analysis for each time period in our study indicates that the inability to provide post-death care and the shortage of PPE had an impact on the distress of healthcare providers only in T1 and T2, even though restrictions were still often in place in T3 and T4. This might suggest that healthcare providers may have adapted better to the restrictions in a somewhat later phase of the pandemic.

It is possible that respondents that were in severe emotional distress did not complete the (follow-up) questionnaires, resulting in a sample that predominantly represents the respondents that were doing (relatively) well. This could lead to an underestimation of distress in HCPs. Moreover, there might have been recall bias when the first questionnaire was conducted because it contained questions about an earlier time period. However, the start of the pandemic and thereby the first period was an exceptional period, so people might remember very well how they felt during that time. Furthermore, the question if visit restrictions were in place was asked in a general way; we cannot say anything about the severity of the visit restrictions and for this reason, results may be over- or underestimated. A strength of our study is that all care settings and different professions with care for both COVID-19 and non-COVID-19 patients were included. In this way our study offers a broad perspective. Furthermore, the longitudinal aspect of our study is strength, as we have data up to 18 months after the beginning of the pandemic.