ABSTRACT
This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning.
ABSTRACT
Aims: The COVID-19 pandemic forced a trade-off between the interests of all versus those of individuals. Therefore, many healthcare organisations applied visiting restrictions, also for dying patients.Our aim was to explore, in an international context, if visiting restrictions for dying patients had an impact on the quality of life of healthcare professionals. Method(s): From April 2020 to June 2021, an open online survey was conducted among healthcare professionals in 14 countries;Belgium, Czech Republic, Norway, Slovenia, the Netherlands, United Kingdom, Argentina, Brazil, Chile, Colombia, El Salvador, Uruguay, Indonesia and Japan. The survey consisted of validated and purposively designed measures of perceived quality of care (CODE) and staff QoL. Data were analysed descriptively and inferentially, with regression analysis conducted for all countries, and the results pooled and analysed in a multilevel analysis using Cochrane Review Manager. Result(s): Among 2925 respondents (mean age 42 years), 2385 (81.8%) were female, 1601 (54.9%) were nursing staff, and 1560 (53.3%) worked in hospitals. Approximately half of the patients reported on were men (n = 1470, 50.4%) and 1202 (41.4%) were COVID-19 positive. In all countries, the majority of respondents rated medical and nursing care for the patient as sufficient (n = 2468, 84.6%, and n = 2426, 83.2%, respectively). In 1559 cases (53.9%), visitors were allowed with limitations during the last 2 days of the patient's life, and in 468 cases (16.2%) no visits were allowed at all. Most respondents rated their QoL during the past week as 4 or higher out of 7. Mean QoL was lowest in Brazil (M 3.94, SD 1.34) and highest in Indonesia (M 5.80, SD 1.21). Regression analyses showed that no or limited visiting in the last days of life, was associated with lower QoL scores of healthcare professionals compared with those who reported that visiting was unrestricted (OR 0.63, 95%CI 0.48-0.83, p<0.001). Heterogeneity between countries was high. Conclusion(s): Our results suggest that visiting restrictions are associated with QoL of healthcare professionals. It may be that restrictions resulted in staff feeling unable to provide the desired level of care, and in turn affected their role perception and QoL.
ABSTRACT
Background/aims: Providing end-of-life care during the COVID-19 pandemic often involved high workload under unusual circumstances. Aim: To describe the well-being of healthcare professionals who provided end-of-life care in the first year of the COVID-19 pandemic. Methods: A longitudinal online survey filled in multiple times by the same 169 healthcare professionals from different professions (57% nurses, 12% physicians, 31% other) and settings (26% hospital, 15% nursing home, 22% hospice, 18% home, 19% other), who provided end-of-life care during the COVID-19 pandemic. They responded to five statements about their well-being in three different time periods: during the first wave (Mar 2020 - May 2020), second wave (Sept 2020 - Nov 2020) and a third period (Dec 2020 - Apr 2021) of the COVID-19 pandemic. Differences between these time periods were assessed using confidence intervals. Results: During the first wave, second wave and third period: 64%, 36% and 39% of respondents reported that they were more stressed than usual 50%, 31% and 35% stated that their work was emotionally demanding 37%, 23% and 30% stated that their work was physically demanding 47%, 38% and 42% stated that they felt exhausted regularly 47%, 26% and 29% stated that they needed more emotional support than usual. For every statement, except the one on exhaustion, the decrease in percentage of respondents agreeing with the statement between the first and second wave was significant. The percentages were slightly higher again in the third period, although not significant. Conclusions: During the first year of the COVID-19 pandemic, a substantial part of healthcare professionals showed signs of distress. That means that the well-being of healthcare professionals is at stake. It is important to study how this further develops and what healthcare professionals' needs are to endure and recover from these challenging times.
ABSTRACT
Background/aims: During the COVID-19 pandemic, measures imposed by governments and healthcare institutions to limit spreading of the disease may have negatively impacted the quality of care for dying patients. Our aim was to provide insight into similarities and differences between countries in the experiences of healthcare workers caring for patients in their last days of life during the COVID-19 pandemic. Methods: An open online survey study, consisting of purposively designed measures of perceived quality of care for dying patients, was conducted among healthcare workers from April 2020 to June 2021 in Belgium, Czech Republic, Norway, Slovenia, the Netherlands, United Kingdom, Argentina, Brazil, Chile, Colombia, El Salvador, Uruguay, Indonesia and Japan. Descriptive statistics were calculated. Results: A total of 3112 healthcare workers from 14 countries completed the questionnaire. The number of respondents per country ranged from 44 respondents in El Salvador, to 764 respondents in the Netherlands. The percentage of respondents who indicated that treatment and care for dying patients had been limited due to the pandemic ranged from 13% in Norway to 88% in Slovenia. Nevertheless, the majority of health care professionals considered the quality of medical care sufficient to meet the patient's needs, with percentages ranging from 73% in the Czech Republic to 99% in Colombia. Nursing care was also considered sufficient by the majority of health care professionals, with percentages ranging from 59% in Argentina to 96% in Chile. Conclusions: Preliminary results show important differences between countries in the impact of the COVID-19 pandemic and related measures on end-of-life care. Although in all countries the majority of healthcare workers reported sufficient quality of medical and nursing care, there were large differences in perceived limitations in treatment and care due to the pandemic.
ABSTRACT
Background/aims: The circumstances under which patients died during the first wave of the COVID-19 pandemic, such as visiting restrictions, can affect the grieving process of bereaved relatives. The aim of this study was to examine how characteristics of bereaved relatives, their evaluation of the dying process, and being allowed to be with the patient in the last days of life are related to their grieving process. Methods: We conducted an open observational online survey (Nov 2020-Apr 2021) among 258 bereaved relatives to study their experience of end-of-life care for a loved one who had died during the first wave (Mar 2020-Jun 2020) of the COVID-19 pandemic. Grief was measured with the Hogan despair subscale (scores between 13 and 65), with higher scores indicating more despair. Data were analysed using descriptive statistics and multivariate analyses. Results: Most respondents were female (82%) and were children (63%) or partners (22%) of the deceased patients. The overall mean despair score was 24.6. Partners had a significantly higher mean despair score than children (33.6 vs 22.9). Terms which relatives most often selected to describe the dying process of the patient were: sad (63%), quiet (43%), painful (30%), shocking (27%) and degrading (26%). Relatives who described the dying process in more negative terms had worse mean despair scores than those who used more positive terms. Sixty percent of the relatives had not been allowed to be with the patient at the time of dying. They had higher mean despair scores (25.1) than relatives who had been allowed to be present (23.8). Conclusions: The findings indicate that the circumstances in which patients died are related to the extent of relatives' grief. These findings underline the importance of striving for a good death in the physical presence of relatives during a pandemic. Supporting relatives is important to prevent complex grief, recognising the vulnerability of especially bereaved partners.
ABSTRACT
The COVID-19 pandemic has introduced a myriad of challenges to the social life and care of people with Parkinson's disease (PD), which could potentially worsen mental health problems. We used baseline data of the PRIME-NL study (N = 844) to examine whether the association between COVID-19 stressors and mental health is disproportionately large in specific subgroups of people with PD and to explore effects of hypothetical reductions in COVID-19 stressors on mental health and quality of life. The mean (SD) age of the study population was 70.3 (7.8) years and 321 (38.0%) were women. The linear regression effect estimate of the association of COVID-19 stressors with mental health was most pronounced in women, highly educated people, people with advanced PD and people prone to distancing or seeking social support. Smaller effect estimates were found in people scoring high on confrontive coping or planful problem solving. The parametric G-formula method was used to calculate the effects of hypothetical interventions on COVID-19 stressors. An intervention reducing stressors with 50% in people with above median MDS-UPDRS-II decreased the Beck Depression Inventory in this group from 14.7 to 10.6, the State-Trait Anxiety Inventory from 81.6 to 73.1 and the Parkinson's Disease Quality of Life Questionnaire from 35.0 to 24.3. Insights from this cross-sectional study help to inform tailored care interventions to subgroups of people with PD most vulnerable to the impact of COVID-19 on mental health and quality of life.
ABSTRACT
Background: How COVID-19 has impacted end-of-life care in the Netherlands may differ between the first and second wave, as for instance in the second wave visiting restrictions were less strict. We can learn from data of the two waves of this pandemic and the impact on end-of-life care for future waves or other pandemics. Aim: To describe to what extent end-of-life care was limited due to the COVID-19 pandemic according to healthcare professionals in different settings during the first and second wave of the pandemic in the Netherlands. Methods: An open online survey between November 2020 and February 2021 among health care professionals who provided end-of-life care during the first and second wave of the COVID-19 pandemic in the Netherlands (between March 2020 and February 2021). We tested differences between healthcare settings and waves using confidence intervals. Results: 255 healthcare professionals (42 physicians, 199 nurses, 66 other healthcare workers) from different settings. In all settings, psychosocial care and spiritual care were more often limited compared to nursing care and medical care in both waves. For all aspects, except medical care, care was most often limited in nursing homes and hospitals, in both waves. Overall, more than half of the healthcare workers said that psychosocial care (57%), spiritual care (55%) and preparing patients and relatives for death (53%) were limited during the first wave. With resp. 31%, 30% and 22% these percentages were lower in the second wave. Discussion: Especially psychosocial and spiritual care were limited, possibly due to a focus on preventing infections with measures such as physical distance and visiting restrictions. Since psychosocial and spiritual aspects are essential for good end-of-life care, it is important to weigh pros and cons of preventing infections and limiting psychosocial and spiritual care. This seems to have been done better in the second wave.
ABSTRACT
Background: The COVID-19 pandemic and restricting measures may have affected end-of life care, including experiences of relatives who lost a loved one. Aims: To describe experiences of bereaved relatives with end-of-life care for a loved one who died at home, in a hospital, nursing home or hospice during the pandemic, and to examine how restricting measures influenced their evaluation of care. Methods: Bereaved relatives completed an open observational online questionnaire about their evaluation of end-of-life care as provided to a loved one who died between March and July 2020. Results: The questionnaire was filled out by 393 bereaved relatives whose loved ones died at home (n=68), in a hospital (n=114), nursing home (n=176) or hospice (n=35). Patients who had died were more often men (49% vs 47%), aged 75 years or older (72%), and had COVID- 19 (57%). Patients who died in a hospital more often had COVID-19 (76%) than patients in nursing homes (62%), hospices (43%) or at home (18%). Bereaved relatives were mostly women (81%), aged 45 years or older (82%), and a child (55%) of the patient. Bereaved relatives of patients who died in a hospital most often evaluated medical (79%), nursing (75%) and personal care (72%) as sufficient, whereas medical (55%) and personal care (62%) in nursing homes and nursing care at home (66%) were least often evaluated as sufficient. Hospitals, nursing homes and hospices had implemented visiting restrictions in the majority of cases (76%, 90%, 71%, respectively). These restrictions were negatively associated with bereaved relatives' evaluation of medical and personal care in nursing homes, and medical care in hospitals. Conclusion: End-of-life care during the COVID-19 pandemic was evaluated most favourably in hospitals and least favourably in nursing homes. Our study suggests that visiting restrictions had a major impact, especially in nursing homes.
ABSTRACT
Background: The Covid-19 pandemic made abundantly clear that we all may suddenly fall severely ill and may find ourselves in need of a care plan. Advance care planning (ACP) may provide support to patients in these circumstances. It is unknown if and how the relatively new concept of ACP is portrayed and presented to the general public in newspapers during the pandemic. Aims: To investigate newspaper coverage of ACP during the Covid-19 pandemic. Methods (design, data collection, analysis): From LexisNexis Uni, an international electronical archive of newspapers, we included articles about ACP and Covid-19, in English or Dutch, published in 2020. We conducted a descriptive content analysis. Using a standardized form, we extracted data about the articles (date of publication, country), their conceptualization of ACP and how ACP was portrayed. Results: We found 134 eligible articles. Articles were mainly published in April 2020 (73 articles;54%) and in newspapers published in the United Kingdom (n=59), Canada (n=32) or the United States (n=15). Sixty-three percent of the articles explained what ACP is, the others mentioned ACP without explanation. In 81% of the articles, possible treatment and care options for Covid-19 were discussed, mostly cardiopulmonary resuscitation (38%), artificial ventilation (31%), admission to the hospital (34%) or admission to the intensive care unit (16%). In sixty-six percent of the articles readers were encouraged to engage in ACP, for instance to discuss care preferences (70 articles;52%) or to make a living will (53 articles;40%). Conclusion / Discussion: This study shows that ACP was part of the public discourse during the Covid-19 pandemic in many countries. Most articles were published at the start of the pandemic and focused on treatment decisions, such as DNR orders. The majority of the articles encouraged the public to engage in ACP, especially to discuss care preferences and make a living will.
ABSTRACT
The COVID-19 pandemic is a serious threat to public health. Latin American structural conditions are a propitious place for the spread of COVID-19. Argentina, Brazil, Chile, Colombia, Mexico and Peru are the countries with the most deaths on the continent. We aimed to explore the characteristics of EoL care practices as provided during the pandemic in 7 Latin American countries (Argentina, Brasil, Chile, Colombia, El Salvador, Perú, Uruguay) and the experiences from relatives and healthcare providers. Methods: Observational study of a convenience sample of people who have recently experienced the death of either a relative or a patient died or not from COVID-19 using 2 rounds of questionnaire surveys, with additional deep-interviews. Social Determinants of Health, working conditions, and QoL were assesed. Primary outcome: a descriptive assessment of the characteristics of EoL care during the pandemic, from the experience of relatives and HCP. Preliminary Results:1430 questionnaires completed until now (726 relatives/ 704 HCP) In-depth interviews analysis in progress. Most of the relatives perceived their loved ones were treated with respect and dignity during the last days of life by doctors 85% and nurses 81 % most of time. HCP rated their QoL average 5 (1 Very poor, 7 Excellent). Conclusion: Provision of best person-centred care for dying patients requires understanding of cross-cultural experiences of dying and bereavement. We provided international and multidimensional perspectives of the impact of this unprecedented pandemic from 7 Latin American countries.
ABSTRACT
Background: The COVID-19 crisis affected the care for critically ill patients, with or without a COVID-19 infection, and may have affected the experience of dying for them and their relatives at the physical, psychological, social and spiritual domains. Aim: To get in-depth insight in the experienced (un)dignity of end-of-life care during the first wave of the COVID-19 outbreak in the Netherlands. Methods: A qualitative study involving 26 in-depth interviews with bereaved relatives, nested in an online survey among 370 bereaved relatives of patients who died between March and July 2020 in the Netherlands. We analysed 'matters of concern' and formulated a dignity framework for analysis based on the models of Chochinov and Van Gennip. Results: Bereaved relatives felt that dignity of their dying relative was undermined at three levels: •Personal, by the fear of becoming infected, dealing with an unknown virus, insufficient medical treatment, witnessing their relative suffocate, being isolated or cut-off, feeling powerless, having to make decisions that lack humaneness or being kept out of the decision making. •Relational, by diminished contact, not being able to comfort or care for the relative, limited possibilities of or support with telephone or video contact, not being able to say farewell, lack of attentiveness from and contact with health care professionals, tactless communication. •Social /organizational, by lacking protective resources, care staff having limited time, unclear isolation policies and restrictive visiting rules. Discussion and reflection: Various circumstances affected the dignity of end-of-life care during the first wave of the COVID-19 pandemic. Among which factors associated with the virus and the general context of the pandemic, and factors arising from preventive measures. Bereaved relatives experienced that preventive measures, based in human action, seemed alterable or could be softened by the health care professionals.