This longitudinal study provides new insights into the extent to which the COVID-19 pandemic limited different aspects of care at the end of life up until 18 months after the start of the pandemic in multiple Dutch healthcare settings, and how COVID-19 related care circumstances impacted care during the pandemic. Especially in the first wave a substantial amount of health care providers considered end-of-life care as limited in all aspects, particularly in the psychosocial and spiritual aspects. This distinction between medical care and nursing care versus psychosocial and spiritual care stayed notable throughout all time periods. Over time, health care providers perceived care as less limited to the point where they barely considered care limited in the last period. Regardless of time period, health care providers experienced end-of-life care as limited when confronted with personal protective equipment shortages, visit restrictions or restrictions in post-death care. Psychosocial and spiritual care were more frequently perceived as limited by health care providers working in nursing homes and hospitals (compared to health care providers working in home care), and by health care providers that were facing restrictions regarding visits and post-death care.

The COVID-19 related circumstances of care impacted care throughout the pandemic

The longitudinal analyses showed that throughout the first 18 months of the pandemic, family visits restrictions, personal protective equipment shortage and post-death care restrictions impacted end-of-life care.

During shortages of personal protective equipment, all aspects of care were more frequently considered limited. This could be attributed to the conservation of personal protective equipment during shortages, which resulted in health care providers being unable to visit (suspected) COVID-patients as frequently as usual [4, 11]. This could have not only impacted the physical care, but also the social aspects of care. When health care providers were restricted in providing post-death care, they considered the psychosocial and spiritual care more often as limited. This could imply that handling patients' bodies, which often has a ritualistic and cultural meaning for health care providers and families, is also important for the social aspects of care. A study on the quality of palliative care that compared care before and after the pandemic in 2022, found that a culturally sensitive and dignified treatment of the body was less often fully achieved and suggests that this could partly be explained by the (dehumanizing) way bodies were treated during the pandemic [19]. Accordingly, health care providers in our study may have felt that the post-death care was not humane for their standards.

Moreover, visit restrictions impacted psychosocial and spiritual care throughout the pandemic. Previous research showed that health care providers felt that patients relied more on them for emotional support, since their family was limited in their visits [11, 20]. However, visit restrictions also complicated the provision of appropriate emotional support as health care providers had less knowledge of their patient since family could not communicate their wishes to the health care providers due to those restrictions [4, 8, 11].

Thus, the visit restrictions and personal protective equipment scarcity impacted care at the end of life. Especially in the beginning of the pandemic, there was a focus on the prevention of the spread of COVID-19 (and therefore safe physical care), instead of good end-of-life care in all domains [4].

Furthermore, our data shows that over time there were less restrictions regarding post-death care and visits and enough personal protective equipment, which may partly explain why health care providers indicated that care was less limited over time. However, even when taking into account for COVID-19 related circumstances of care in the multivariable analyses, limited care was still experienced in all time periods. This might indicate that that not only the COVID-19 related circumstances of care were subject to change, but also the health care providers themselves. They might have learned how to adapt to the situation, to be flexible with the restrictions and to find solutions for their problems. This is in line with a Scandinavian study about visit restrictions in the Intensive Care Unit [21].

Psychosocial and spiritual care more often considered as limited (compared to nursing and medical care)

Throughout the first 18 months of the pandemic, health care providers experienced psychosocial and spiritual care more frequently as limited compared to medical and nursing care. The previously mentioned restrictions regarding family visits, personal protective equipment and post-death care could account for some of that difference. However, in addition, in nursing homes and hospitals, both psychosocial and spiritual care were more often considered limited compared to home care. Between these settings and home care, there were differences in what restrictions were at place and how health care providers dealt with these restrictions. In home care, the health care providers, family and patient could collaboratively decide on appropriate preventative measures, while in nursing homes and hospitals, decisions regarding restrictions were made for health care providers, families and patients without their direct input. However, literature suggests more explanations for why psychosocial and spiritual care were (more often) limited. First, health care providers experienced a high work pressure due to different reasons (more patients, less health care providers, time spent on prevention) which lead to prioritizing medical care over psychosocial or spiritual care [3, 4, 8, 20]. Furthermore, the measures (social distancing and wearing personal protective equipment) often limited health care providers in communicating and developing relationships with patients and how it felt distant to provide care is this manner [7, 11]. Additionally, health care providers that did not provide nursing or medical care (e.g. spiritual counselors and social workers), were often banned from the care facilities (especially during the first period) [4, 20]. Diego-Cordero et al., described that nurses were responsible for providing spiritual care due to a lack of specialized care professionals, while often feeling they lacked appropriate training to provide this type of care [20]. According to the Dutch spiritual care guideline, nurses should refer patients to spiritual counselors or specialized nurses in more complex [22], while in the COVID-19 pandemic complex situations were likely to occur more.

Strengths and limitations

A strength of this study is that it provides a broad overview on end-of-life care during the pandemic, since we looked at multiple healthcare settings and multiple professions, and especially due to the longitudinal design. A limitation of this study is that we did not make a distinction between care for COVID patients and non-COVID patients. There might be differences between these two groups, although most restrictions were applicable to both groups. In addition, we focused on end-of-life care and did not investigate more general factors that may have been experienced as limiting care, such as work pressure. Furthermore, recall bias might have occurred since the questionnaire about the first period was sent during the second period. However, the first wave was such an exceptional time that we expect respondents could remember this period well.