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 The COVID-19 pandemic has had a detrimental impact on millions of people's experiences of bereavement. Traumatic end-of-life experiences and disruptions to support networks increase chances of poor bereavement outcomes. Aim To examine grief and support needs, and identify associated risk factors. Methods Mixed-methods survey of people bereaved in the UK from March 2020-January 2021, disseminated via media, social media, national associations, community/charitable organisations. Practical and emotional support needs were assessed in 13 domains, and grief intensity using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36). Results 711 participants, mean age 49.5 (SD 12.9);88.6% female;95.3% white. Mean age of deceased 72.2 (SD 16.1);58% died in hospital;44% from COVID-19. Mean IOV was 20.41 (95% CI = 20.06 to 20.77), i.e. high vulnerability in grief overall. 28.2% exhibited extreme levels of vulnerability (i.e., IOV ≥ 24). In six support domains, all relating to psycho- emotional support, 50% to 60% of respondents reported high/fairly high levels of need. Increased levels of perceived support from health professionals led to significantly (P < 0.001) lower levels of grief and support need (small/medium effect, P < 0.001). Bereaved participants who were socially isolated/lonely experienced higher levels of grief and support needs than those who were not (P < 0.001). Grief and support needs were much higher for close family members compared with other groups (P < 0.05). Levels of grief and support needs were slightly higher for COVID deaths compared with non-COVID (P < 0.01), although this was not significant in a mixed model. Conclusions People bereaved during the pandemic experience high levels of grief and emotional support needs, with social isolation/loneliness and death of a close family member particular risk factors. Healthcare professionals' support is associated with better bereavement experiences.
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 COVID-19 pandemic has had a detrimental impact on millions of people's experiences of bereavement. Traumatic end-of-life experiences and disruptions to support networks increase chances of poor bereavement outcomes. We aimed to examine grief and support needs, and identify associated risk factors. Methods: Mixed-methods survey of people bereaved in the UK from Mar 2020-Jan 2021, disseminated via media, social media, national associations, community/charitable organisations. Practical and emotional support needs were assessed in 13 domains, and grief intensity using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36). Results: 711 participants, mean age 49.5 (SD 12.9);88.6% female;95.3% white. Mean age of deceased 72.2 (SD 16.1);58% died in hospital;44% from COVID-19. Mean IOV was 20.41 (95% CI = 20.06 to 20.77), i.e., high vulnerability in grief overall. 28.2% exhibited extreme levels of vulnerability (i.e., IOV ≥ 24). In six support domains, all relating to psycho-emotional support, 50% to 60% of respondents reported high/fairly high levels of need. Increased levels of perceived support from health professionals led to significantly (P < 0.001) lower levels of grief and support need (small/medium effect, P < 0.001). Bereaved participants who were socially isolated/lonely experienced higher levels of grief and support needs than those who were not (P < 0.001). Grief and support needs were much higher for close family members compared with other groups (P < 0.05). Levels of grief and support needs were slightly higher for COVID-19 deaths compared with non- COVID-19 (P < 0.01), although this was not significant in a mixed model. Conclusions: People bereaved during the pandemic experience high levels of grief and emotional support needs, with social isolation/loneliness and death of a close family member particular risk factors. Healthcare professionals' support is associated with better bereavement experiences.
ABSTRACT
BACKGROUND: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. AIM: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. DESIGN: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations. SETTING/PARTICIPANTS: 711 participants, mean age 49.5 (SD 12.9, range 18-90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19. RESULTS: Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261-0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254-0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028-0.297) partner versus distant family member. CONCLUSIONS: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.
Subject(s)
Bereavement , COVID-19 , Terminal Care , Adult , Aged, 80 and over , Child , Family , Female , Humans , Middle Aged , Pandemics , Risk Factors , SARS-CoV-2ABSTRACT
Background: From March 2020-March 2021 530,000+ people have died from COVID-19 in the EU, and 120,000+ in the UK. In addition, c.4.85 million in the region have died of other causes, leaving c.43.6 million people bereaved at a time of unprecedented social and clinical restrictions. We aimed to inform practice and policy by describing end of life experiences among people bereaved during the pandemic. Methods: National survey of people bereaved in the UK since March 2020, disseminated via media, social media, national associations, community/ charitable organisations. Results: Interim findings from the first 532 participants are reported (full results available by time of conference). 55% of deaths were in hospital;46% were caused by confirmed/suspected COVID-19. Respondents reported high levels of problems specific to the pandemic bereavement context: 56% were unable to visit their loved one prior to death, 59% had limited contact in last days of life, 67% were unable to say goodbye, 67% experienced social isolation and loneliness, 81% had limited contact with other relatives/friends. COVID-19 deaths were associated with higher levels of all these problems compared with other causes of death (all p < 0.05). Experiences of end of life care were variable: 23% were 'never' involved in decisions about their loved one's care, 17% were not at all informed about the approaching death, 36% felt not at all supported by healthcare professionals after the death, 51% were not provided with information about bereavement support. Conclusions: There is evidence of poor end of life care and challenging experiences among people bereaved during the pandemic. To reduce the trauma of negative death experiences, we recommend improved communication by healthcare professionals, with a known point and method of contact, family involvement in decision-making, enabling family visiting as far as possible, and better support after a death, including information about bereavement services.
ABSTRACT
Background: Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning. Aim: To understand the views of general practitioners and community nurses providing end-of-life care during the first wave of the COVID-19 pandemic. Methods: A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks during September and October 2020. Responses were analysed using descriptive statistics and an inductive thematic analysis. Results: Valid responses were received from 559 individuals (387 community nurses, 156 General Practitioners (GPs) and 16 unspecified role), from all regions of the UK. The majority reported increased involvement in providing community end-of-life care. Contrasting and potentially conflicting roles emerged between GPs and community nurses. There was increased use of remote consultations, particularly by GPs. Community nurses took greater responsibility in most aspects of end-oflife care practice, particularly face-to-face care, but reported feeling isolated. For some GPs and community nurses, there has been considerable emotional distress. Conclusion: Primary healthcare services are playing a critical role in meeting increased need for end-of-life care in the community during the COVID-19 pandemic. They have adapted rapidly, but the significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.
ABSTRACT
Background: Measures put in place to modify the COVID-19 infection rate, may have jeopardised typical end-of-life care values, focused on individual needs and preferences, such as the wish not to die alone. Aim: To understand bereaved relatives' perceptions about the dying experience during the pandemic. Methods: A national online survey, informed by patient and public involvement, was developed and disseminated via social media, public and professional networks (June - September 2020). Validated instruments and purposively designed questions were used to assess experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. Results: Respondents (n=278) had a mean age of 53.4 years;216 (78.0%) were female and 174 (62.6%) were the 'child' to the deceased. Almost 70% of the deceased (mean age 80.5 years;160 (57.6%) female) died in their 'usual place of care' (home n=30 (10.8%);nursing home n=162 (58.3%)). Quantitative survey data and qualitative free-text responses indicated: public health restrictions compounded the distress of 'not knowing' (156, 56.5% were unable to visit during the dying phase of illness);greater confidence and trust in nursing staff compared with medical staff (81.6% vs 57.4%);lack of preparedness (19.9% didn't receive a meaningful explanation about their family members condition);the positive impact of compassionate leadership (176 (75.2%) perceived their family member died in the 'right' place);and unmet emotional needs (30.1% rated emotional support as 'poor'). Being a male respondent (OR 2.9, p=0.03) and being able to visit during the last days of life (OR 2.2, p=0.04) were independently associated with good perceptions of support. Conclusion: Promoting individualised care within an environment of public health restrictions can be enabled by proactive, regular, informative communication;local autonomy and decision-making;and facilitating the ability to be present before death.
ABSTRACT
Background: The global COVID-19 pandemic is having a major impact on experiences of dying and death. Family members perceptions about the quality of care for dying individuals and their preparedness for death may influence their psychological adjustment in grief. Aim: To explore relatives' experiences and needs when their family member was dying during the COVID-19 pandemic to help inform current/ future clinical practice and policy. Design: Participants, who had responded to a national on-line COVID- 19 survey, were invited to participate. Semi-structured interviews were conducted (via telephone or video-call) with relatives whose family member died during the pandemic. Data were analysed thematically. Results: 19 participants (12 female, 7 male) reflected experiences of deaths within hospital and care home settings, with and without COVIDrelated illness. Three themes were identified: (1) entering the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic, and (3) the importance of 'saying goodbye' in a pandemic. In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition, declining health and detailed, holistic information about their wellbeing. Staying virtually connected with them in the final weeks/days of life and having the opportunity for a final contact before death were fundamentally important. Health and social care professionals were instrumental to providing these aspects of care but faced practical challenges in achieving these. Conclusions: Health and social care professionals have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness, ensuring holistic, individualised care updates and creating alternative opportunities for relatives to 'say goodbye'.