“Saying goodbye all alone with no close support was difficult”- Dying during the COVID-19 pandemic: an online survey among bereaved relatives about end-of-life care for patients with or without SARS-CoV2 infection

Our study described bereaved relatives’ experiences with end-of-life support of patients who died with or without SARS-CoV2 infection in Germany. Findings revealed that relatives not only had to cope with the stress caused by losing a relative but that they additionally experienced stress directly related to the pandemic, mainly due to the burden caused by visiting restrictions.

Compared to UK data, which report that half of the bereaved relatives (56 %; 10) were not allowed to visit during the last days of the patient’s life, the situation in Germany was more diverse: while one-quarter of the relatives were not allowed to visit at all, more than 88 % of the relatives were allowed to visit, but restrictions concerning duration or number of visitors were imposed on them. Common to both studies is the great distress that bereaved relatives experienced due to the visiting restrictions [10]. Those relatives who were able to visit more likely reported a feeling of being adequately supported during the last days of life [10], this – once again- underpins the importance of visits.

Visiting restrictions are at odds with the need of being present when a relative is dying[20, 4, 21, 9] and studies have shown that relatives cope and adjust better in bereavement when they are involved in end-of-life care [22]. Most relatives who were not or only with restrictions allowed to visit their loved ones felt burdened by the situation and described suffering from the lack of physical closeness, saying goodbye and no appropriate end-of-life care, and not knowing the condition of the patient, this is also reported in recent studies [10, 9]. Face-to-face visits are crucial for dying patients[23‐25] and accompanying relatives [26‐29, 3]. The possibility of face-to-face visits also impacts the processing of the death. Bereaved families in the present study regretted that visiting restrictions were often lifted too late, e.g., when the patient was no longer responsive to say goodbye, this underpins findings from the UK [10]. Identifying the appropriate moment as the end-of-life and thus facilitating visits was reported as a challenge by health care professionals: estimating the remaining time wrong, relatives did not get time to say goodbye to the patient. Healthcare professionals had the impression that relatives would benefit from having the opportunity to visit when the dying patient is conscious and responsive and not just the hours before death [11]. The healthcare professionals’ description enhances the findings of the present study: it is essentially giving relatives and patients the chance to say goodbye early enough to avoid “missing the moment before” death and to say goodbye when the patient is responsive. This is in line with best clinical practice, suggesting that relatives should not only be allowed to visit the dying but also severely ill and deteriorating patients [3, 30, 31]. Also during pandemic situations, relatives should be allowed to visit the deteriorating patients early for saying goodbye and appropriate end-of-life care for both sides. It should be enabled under consideration of necessary hygiene and safety measures. Visiting restrictions caused additional organizational challenges to the accompanying relatives and emotional support by other visiting relatives was missing.

Even after the official visiting ban has been lifted, some facilities still did not allow any visitors, causing an additional burden for relatives. To our knowledge, there are no analyses of what organizational consequences care facilities drew from lifting the visiting ban. In addition, there should be uniform regulations on how visits, apart from a general ban on visits, should be handled.

Relatives of patients who died at home felt less burdened by the pandemic situation than relatives of patients who died in care facilities. They mentioned that the pandemic situation (e.g. flexibility due to home office) was rather beneficial, allowing to spend more time with the patient. Vice versa, Mayland et al. [10] describe that especially relatives who experienced the death in a nursing home or hospital suffered from distress due to visiting restrictions. Being allowed to accompany a dying family member in the last phase of life may be important for the bereavement process [32, 33].

Of the bereaved relatives in our study, those of SARS-CoV2 positive patients felt more burdened and visiting arrangements were stricter. Often, relatives of SARS-CoV2 positive patients are also tested positive, so that quarantine regulations make visits even more difficult. As this project set the focus on palliative care patients irrespectively of a SARS-CoV2 infection, the majority of the decedents and their relatives were SARS-CoV2 negative. Still, they suffered from hygiene and safety measures, and there are signals that visiting arrangements for SARS-CoV2 positive patients were even stricter. Data concerning divergent experiences between SARS-CoV2 negative/positive patients need to be interpreted with great caution due to the descriptive data reported and group sizes differences.

Given the importance of visits at the end of life, visiting regulations and infection control measures should be reconciled to avoid SARS-CoV2 infections and enable contacts. Therefore evidence-based interventions as tracing and isolating SARS-CoV2-positive cases or rapid SARS-CoV2 testing are useful [34, 35]. Facilities should inform about COVID-19 regulations on their websites and guide relatives through their regulations. This contributes to transparent communication and helps relatives to understand the reasons for the regulations [26, 29]. Individual decisions instead of one-size-fits-all rules could help to do justice to the dying patients and their relatives. In December 2020, an order of one state of Germany (North Rhine-Westphalia) decreed that visits must be allowed from the 6th day of an inpatient stay to prevent too long periods of non-face-to-face contact between relatives [36].

When relatives were not allowed to spend face-to-face time with the patient due to the pandemic situation, video or telephone calls could be a way to achieve connectedness. Hanna et al.[11] describe the importance for family members to stay virtually connected with the dying family member in the last phase of life in the absence of visiting: it allows relatives to see for themselves that the patient is doing okay and creates a connection between the patient and the usual family life [11]. The present survey showed that only a few facilities provided online communication; the majority of the bereaved relatives were not given the opportunity. Depending on the patient’s cognitive condition and the level of support provided, online communication can be difficult for some patients. Health and social care professionals reported that especially when a patient was suffering from dementia or another cognitive impairment, video calls were rarely offered because of the concern that it might be distressing for the patient or relative [11]. A similar survey from the UK [10] reports fewer relatives/patients who were unable to communicate virtually than the ones in the current survey (UK: 34 % vs. Germany 69 %) and missing equipment as an obstacle in providing online communication [11]. Even with the option for online communication, it cannot compensate for physical contact.

This corresponds to a recent study’s findings that virtual interactions were rare [9, 11] and shows that this area provides significant opportunities for improvement, and holds the possibility to support highly distressed relatives and dying family members.

Our survey revealed mixed experiences of bereaved relatives regarding communication with the healthcare teams. About half of the relatives indicated that the team had enough time to listen and discuss the patient’s condition and had been provided with enough information. Bereaved relatives’ judgment in the present study did differ between doctors and nurses, but data from the UK shows that relatives had a greater level of confidence in the nursing staff and that they provided care with more respect and dignity than doctors [10]. This might be due to differences in the health care system in the two countries (the UK vs. Germany). Three-quarters felt treated empathically by the healthcare team. However, using the free text comments, relatives expressed regret about a lack of open, proactive communication accompanied by a deficit of reliable contact persons and information. Studies underpinned the importance for relatives, especially when they are not allowed to physically visit the dying patient, to be provided with clear and precise information about his/her condition [9]. This comprises information regarding symptom management [37, 38], health decline [38, 39], and personal aspects of care [37]. In this aspect, the relatives’ needs were not met, not only concerning the amount of information but also the way it was provided. This demonstrates the relevance for healthcare teams to install ways to provide reliable information about the patient and to focus on empathic communication. UK patients’ relatives highly valued compassionate care from the healthcare team, allowing early visits before the death of the patient to say goodbye [10].

As the survey relates to the beginning pandemic situation in Germany, healthcare professionals were overwhelmed by the numerous new challenges and work overload due to the COVID-19 crisis and consequently reduced staffing levels leading to the prioritization of physical elements of care [11]. Furthermore, the pandemic caused emotional challenges[40] and huge uncertainty about how to react to the pandemic crisis. Still, studies underline that communication rules applied in palliative care should be used [41‐43], that healthcare teams need to communicate clinical uncertainty to the relatives[44] to ensure transparent medical care, and to use COVID-19 specific language [45].

The strengths of this study are the collection of data on end-of-life care of patients, with and without SARS-CoV2 infection, during the first wave of the pandemic in all care settings where people die, the use of validated questionnaires, the adaptation to the pandemic situation, and the assessment of subjective experiences via free-text comments.

A limitation of the study is the focus on the last two days of the patient’s life in many questions. As we adapted the survey from another planned study which used a validated questionnaire we decided to keep the time frame. However, we allowed respondents to provide free-text comments which indicated that bereaved relatives suggest, that a longer period before passing away is relevant.

One limitation might be the relatively small sample size restricting the generalisability of the study. Although we used several recruiting methods, the most successful recruitment way was an interview printed in a regional newspaper that published the survey link. The newspaper has a wide catchment area which includes urban and rural areas and helps to get a wide spectrum of different experiences. Due to the survey’s online format, there was a selection bias resulting in the participation of relatives who felt able to complete an online survey.