This cross-sectional survey study describes palliative care practices and the burden of moral distress during the COVID-19 pandemic in the Czech Republic. This study is interesting through focusing research on both physicians and nurses. We found a significant shift in providing palliative care during the pandemic, in comparison with providing palliative care out of pandemic, that was also one of the sources of moral distress for HCPs. Our results also confirm that providing palliative care is more psychologically demanding from the point of view of HCPs than full treatment, which supports findings from other studies [27, 28].
The most important data from our survey show that more than half of all respondents were exposed to moral distress during the pandemic. However, only one-fifth of HCPs stated that the level of moral distress in the COVID-19 pandemic was comparable with the level of moral distress before the pandemic. These results are comparable with findings by similar studies focused on moral distress during the COVID-19 pandemic. More severe moral distress was described in HCPs working with COVID-19 patients compared to the level of moral distress in HCPs working with patients without COVID-19 in recent studies investigating mental health [1,2,3]. Contrary to these studies, our study was focused on the moral distress of HCPs working in ICUs, where critically ill patients were hospitalised. This care is extremely demanding for specific knowledge and hard and soft skills, especially in a new, more challenging situation such as the COVID-19 pandemic [29].
The following two factors were independently associated with moral distress risk: perception of inappropriate care and perception that the dying of COVID-19 patients was not dignified. These modifiable factors of moral distress are features of ethical climate and patient-oriented care.
Perceiving inappropriate care within the team regarding organ support was a major source of moral distress that more than half of HCPs experienced. This factor was reported in other studies, but our study confirms these findings in a larger study population [7, 8]. Inappropriate care is one of the most important triggers for moral distress. Improving the decision-making process at the EOL period and communication among all members of this process will reduce the incidence and the level of moral distress. This process requires further education and training for all HCPs. Correspondingly, after the DISPROPRICUS study, we know that improving the ethical climate is important for identifying patients receiving excessive care [30].
The authors consider it alarming that according to our respondents, one-fifth of patients did not die with dignity, even if dying with dignity should be the major goal of palliative care. The factors that led to this situation were mainly systemic problems, inconsistent physicians’ views on palliative care, and insufficient understanding of palliative care principles. Systemic problems will diminish after the pandemic has ceased, but the other factors need to be solved with proper education and protocols.
The interesting finding of the survey is the identification of the factor significantly associated with reducing the chance for the occurrence of moral distress. Dying with dignity reduced the chance for the occurrence of moral distress by approximately 76%. This is an important modifiable factor by HCPs involved in palliative care and ICU management by enhancing patient- and family-centred care. For example, ABCD (Attitude, Behaviour, Compassion, and Dialogue) approaches for dignity conserving care can be used in practice or for education purposes. Another essential part of palliative care is avoiding harm, respecting internal and external qualities, like autonomy of the patient, physical comfort, and reflecting the patient's spirituality. All conflicts among family relatives and HCPs must be prevented or solved effectively [10, 11]. The results show that the comfort of patients’ dying is very important, because it unquestionably affects the patients but also the HCPs’ moral distress in both manners.
Communication about potential inappropriate care and setting patients’ therapy goals is an essential part of palliative care. Our study found statistically significant differences between physicians and nurses in possible participation in these discussions. Moreover, our results indicate that despite both nurses and physicians expressing their opinion about inappropriate care, more than half of nurses’ opinions were ignored, which carries a high potential to trigger and worsen moral distress and burnout syndrome [27, 31]. Improvement in team communication, including treatment goals with candid and clear reasoning, could significantly reduce HCPs’ distress.
Poor communication could also be caused by missing local protocols for providing palliative care and limited availability of palliative teams in hospitals. As mentioned in the results, only less than half of the respondents had available dedicated palliative team in their hospital, and only one-third had local protocols for providing palliative care. This is the hospital's responsibility and ICU management, as other studies investigating the role of palliative teams in ICU palliative care showed [32, 33]. Establishing a palliative care team in each hospital is a long-term goal. Additionally, improving palliative care education, creating and implementation of local protocols for palliative care practice are one of the major goals of the newly established palliative initiative in the Czech Republic (https://www.med.muni.cz/ripe-icu/en).
The EOLD is made within the shared decisions model based on the patient's actual health state and prognosis, but also the patient's wishes and values. One way to acknowledge them is through discussion with the patient. In the ICU environment, this is often impossible. The legal way to know the will of patients unable to communicate sufficiently is through advanced directives. Our findings suggest that this possibility is not used adequately in the Czech Republic, probably because it was legalised in 2012 and has not been well known throughout the population yet.
EOLD often involved physicians, primary nurses, and patients’ relatives, but in general, nurses were surprisingly involved in only half of the reported cases. These findings are opposite to the whole teamwork concept in the ICU and contrary to the overall recommendations regarding EOLD [34, 35]. The authors emphasise that the opinion of nursing staff should be taken into account. Similar results were confirmed in more studies [8, 9]. These facts represent an opportunity to improve the ICU atmosphere and reduce the risk of moral distress, especially among nurses.
Another important finding from our study is that only approximately one quarter of respondents experienced family involvement as an essential part of the shared decisions model. We have no data to compare practices regarding the involvement of relatives in the EOL process before the pandemic. On the other hand, COVID-19 and related restrictive public and visitation policies separated patients from their beloved ones, leaving them alone. These factors are reported to be associated with disturbed experience and increased risk of posttraumatic stress disorder in family members [36, 37]. But surprisingly, our study findings show that the vast majority of relatives (85.9%) in the cases where HCPs communicated about EOLD with family were informed personally. It was reported that visitation was totally banned during the pandemic or allowed only for EOL visits [37]. Early family involvement and the possibility of psychological support during EOLD for relatives and HCPs are strongly recommended, but during extraordinary times of COVID-19, family members were loaded by additional frustration [27, 38, 39].
One of the key principles of palliative care is to relieve patients’ discomfort; therefore, monitoring symptoms is essential for efficient care. Our findings show that the overall monitoring of specific forms of distress could be improved. Spiritual distress was the least monitored, and our results correspond to other studies investigating spiritual distress, its monitoring, and possible problems. But this kind of distress is the most complicated to evaluate. The HCPs are often unsure how to approach these topics or maybe scared of possible patients’ questions [40, 41]. The professionalism regarding this sometimes overlooked topic requires proper education, clinical practice, and extensive training; therefore, it is impossible to have qualified HCPs at each ICU. For this reason, at least one member of the palliative team should be qualified in spiritual distress monitoring and available to assist ICU staff.
According to our results, the practice of palliative care during the pandemic was different. The reported differences were mainly regarding insufficient communication among all HCPs and relatives, providing palliative care by less skilled HCPs, lack of time for patients and for psychological or spiritual support. The most frequent causes of this difference were health system congestion, personnel factors [9], clinical characteristics, and the prognosis of COVID-19 infection [4, 5, 7].
The COVID-19 pandemic exposed all HCPs to the new situations. Physicians had to perform rationing and triage patients without enough information about this new diagnosis with a poor prognosis [42,43,44]. The hospitals were overloaded, and the nursing staff had less time for patient care, which could lead to poor quality of care. Lack of equipment, medicaments, or less time represented the situation called resource scarcity. COVID-19 pandemic showed the problem with resource allocation and the potential risk of inappropriate care. Discussion about resource allocation and developing rules and guidelines is essential, and it can prevent moral distress development in medical staff in the future [12, 13].
As we know, the level of moral distress represents an essential factor for the risk of burnout or job dissatisfaction and potential turnover and attrition in the profession. Many sources and modifiable factors of moral distress have been mentioned. It is a challenge and commitment for the management of hospitals and ICUs at the local level and, of course, a challenge at the national level for the direction of the Ministry of Health and all stakeholders involved (e.g. universities, professional societies).
Strength and limitations of the study
The study's main strength is a nationwide cross-sectional study that includes both physicians and nurses. The second main strength is that the study was supported by the new officially established palliative initiative in the Czech Republic and supported by the Ministry of Health and professional societies of HCPs. This study has several limitations. First, the survey was performed only in the Czech Republic; hence, it may not be generalised to other countries. The second limitation is the low response rate. Only 14.5% of respondents opening the survey finished it completely. Another possible limitation is the respondents’ composition. Some of them worked in specially established ICUs without previous experience with palliative care; on the other hand, the survey describes the real providing palliative care during the pandemic. The national guidelines and recommendations for palliative care practice are another possible limitation. These guidelines were published in 2010 without any recent revision, despite palliative care development. Still, both groups (from newly established ICUs and ‘traditional’ ICUs) reported problems with moral distress. We therefore assume that our work is meaningful and will need to be continued in the long term.