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      Experiences, challenges and perspectives for ensuring end-of-life patient care: A national online survey with general practitioners in Germany

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          Abstract

          Background

          The SARS-CoV-2 (COVID-19) pandemic is posing major challenges for health care systems. In Germany, one such challenge has been that adequate palliative care for the severely ill and dying (with and without COVID-19), as well as their loved ones, has not been available at all times and in all settings., the pandemic has underlined the significance of the contribution of general practitioners (GPs) to the care of severely ill and dying patients.

          Objectives

          To describe GPs’ experiences, challenges and perspectives with respect to end-of-life care during the first peak of the pandemic (spring 2020) in Germany.

          Materials and methods

          In November and December 2020, a link to an Unipark online survey was sent to GPs registered on nationwide distribution lists.

          Results

          In total, 410 GPs responded; 61.5% indicated that the quality of their patients’ end-of-life care was maintained throughout the pandemic, 36.8% reported a decrease in quality compared to pre-pandemic times. Of the GPs who made home visits to severely ill and dying patients, 61.4% reported a stable number of visits, 28.5% reported fewer visits. 62.7% of the GPs reported increased telephone contact and reduced personal contact with patients; 36.1% offered video consultations in lieu of face-to-face contact. The GPs reported that relatives were restricted (48.5%) or prohibited from visiting (33.4%) patients in nursing homes. They observed a fear of loneliness among patients in nursing homes (91.9%), private homes (87.3%) and hospitals (86.1%).

          Conclusions

          The present work provides insights into the pandemic management of GPs and supports the development of a national strategy for palliative care during a pandemic.

          To effectively address end-of-life care, GPs and palliative care specialists should be involved in COVID-19 task forces on micro, meso and macro levels of health care.

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          Most cited references23

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          COVID-19 and the consequences of isolating the elderly

          As countries are affected by coronavirus disease 2019 (COVID-19), the elderly population will soon be told to self-isolate for “a very long time” in the UK, and elsewhere. 1 This attempt to shield the over-70s, and thereby protect over-burdened health systems, comes as worldwide countries enforce lockdowns, curfews, and social isolation to mitigate the spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). However, it is well known that social isolation among older adults is a “serious public health concern” because of their heightened risk of cardiovascular, autoimmune, neurocognitive, and mental health problems. 2 Santini and colleagues 3 recently demonstrated that social disconnection puts older adults at greater risk of depression and anxiety. If health ministers instruct elderly people to remain home, have groceries and vital medications delivered, and avoid social contact with family and friends, urgent action is needed to mitigate the mental and physical health consequences. Self-isolation will disproportionately affect elderly individuals whose only social contact is out of the home, such as at daycare venues, community centres, and places of worship. Those who do not have close family or friends, and rely on the support of voluntary services or social care, could be placed at additional risk, along with those who are already lonely, isolated, or secluded. Online technologies could be harnessed to provide social support networks and a sense of belonging, 4 although there might be disparities in access to or literacy in digital resources. Interventions could simply involve more frequent telephone contact with significant others, close family and friends, voluntary organisations, or health-care professionals, or community outreach projects providing peer support throughout the enforced isolation. Beyond this, cognitive behavioural therapies could be delivered online to decrease loneliness and improve mental wellbeing. 5 Isolating the elderly might reduce transmission, which is most important to delay the peak in cases, and minimise the spread to high-risk groups. However, adherence to isolation strategies is likely to decrease over time. Such mitigation measures must be effectively timed to prevent transmission, but avoid increasing the morbidity of COVID-19 associated with affective disorders. This effect will be felt greatest in more disadvantaged and marginalised populations, which should be urgently targeted for the implementation of preventive strategies.
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            Quarantine alone or in combination with other public health measures to control COVID-19: a rapid review

            Background Coronavirus disease 2019 (COVID‐19) is a rapidly emerging disease that has been classified a pandemic by the World Health Organization (WHO). To support WHO with their recommendations on quarantine, we conducted a rapid review on the effectiveness of quarantine during severe coronavirus outbreaks. Objectives We conducted a rapid review to assess the effects of quarantine (alone or in combination with other measures) of individuals who had contact with confirmed cases of COVID‐19, who travelled from countries with a declared outbreak, or who live in regions with high transmission of the disease. Search methods An information specialist searched PubMed, Ovid MEDLINE, WHO Global Index Medicus, Embase, and CINAHL on 12 February 2020 and updated the search on 12 March 2020. WHO provided records from daily searches in Chinese databases up to 16 March 2020. Selection criteria Cohort studies, case‐control‐studies, case series, time series, interrupted time series, and mathematical modelling studies that assessed the effect of any type of quarantine to control COVID‐19. We also included studies on SARS (severe acute respiratory syndrome) and MERS (Middle East respiratory syndrome) as indirect evidence for the current coronavirus outbreak. Data collection and analysis Two review authors independently screened 30% of records; a single review author screened the remaining 70%. Two review authors screened all potentially relevant full‐text publications independently. One review author extracted data and assessed evidence quality with GRADE and a second review author checked the assessment. We rated the certainty of evidence for the four primary outcomes: incidence, onward transmission, mortality, and resource use. Main results We included 29 studies; 10 modelling studies on COVID‐19, four observational studies and 15 modelling studies on SARS and MERS. Because of the diverse methods of measurement and analysis across the outcomes of interest, we could not conduct a meta‐analysis and conducted a narrative synthesis. Due to the type of evidence found for this review, GRADE rates the certainty of the evidence as low to very low. Modeling studies consistently reported a benefit of the simulated quarantine measures, for example, quarantine of people exposed to confirmed or suspected cases averted 44% to 81% incident cases and 31% to 63% of deaths compared to no measures based on different scenarios (incident cases: 4 modelling studies on COVID‐19, SARS; mortality: 2 modelling studies on COVID‐19, SARS, low‐certainty evidence). Very low‐certainty evidence suggests that the earlier quarantine measures are implemented, the greater the cost savings (2 modelling studies on SARS). Very low‐certainty evidence indicated that the effect of quarantine of travellers from a country with a declared outbreak on reducing incidence and deaths was small (2 modelling studies on SARS). When the models combined quarantine with other prevention and control measures, including school closures, travel restrictions and social distancing, the models demonstrated a larger effect on the reduction of new cases, transmissions and deaths than individual measures alone (incident cases: 4 modelling studies on COVID‐19; onward transmission: 2 modelling studies on COVID‐19; mortality: 2 modelling studies on COVID‐19; low‐certainty evidence). Studies on SARS and MERS were consistent with findings from the studies on COVID‐19. Authors' conclusions Current evidence for COVID‐19 is limited to modelling studies that make parameter assumptions based on the current, fragmented knowledge. Findings consistently indicate that quarantine is important in reducing incidence and mortality during the COVID‐19 pandemic. Early implementation of quarantine and combining quarantine with other public health measures is important to ensure effectiveness. In order to maintain the best possible balance of measures, decision makers must constantly monitor the outbreak situation and the impact of the measures implemented. Testing in representative samples in different settings could help assess the true prevalence of infection, and would reduce uncertainty of modelling assumptions. This review was commissioned by WHO and supported by Danube‐University‐Krems. Does quarantine control coronavirus (COVID‐2019) either alone or in combination with other public health measures? Background 

Coronavirus disease 2019 (COVID‐19) is caused by a new virus that has spread quickly throughout the world. COVID‐19 spreads easily between people who are in close contact, or through coughs and sneezes. Most infected people suffer mild, flu‐like symptoms but some become seriously ill and even die.

There is no effective treatment or vaccine (a medicine that stops people catching a specific disease) for COVID‐19, so other ways of slowing (controlling) its spread are needed. One of the World Health Organization’s (WHO) recommendations for controlling the disease is quarantine. This means separating healthy people from other healthy people, in case they have the virus and could spread it. Other similar recommendations include isolation (like quarantine, but for people with COVID‐19 symptoms) and social distancing (where people without symptoms keep a distance from each other physically).

 What did we want to find out? 

We wanted to find out whether and how effectively quarantine stops COVID‐19 spreading and if it prevents death. We wanted to know if it was more effective when combined with other measures, such as closing schools. We also wanted to know what it costs.

 Study characteristics 

COVID‐19 is spreading rapidly, so we needed to answer this question as quickly as possible. This meant we shortened some steps of the normal Cochrane Review process. Nevertheless, we are confident that these changes do not affect our overall conclusions.

We looked for studies that assessed the effect of any type of quarantine, anywhere, on the spread and severity of COVID‐19. We also looked for studies that assessed quarantine alongside other measures, such as isolation, social distancing, school closures and hand hygiene. COVID‐19 is a new disease, so, to find as much evidence as possible, we also looked for studies on similar viruses, such as SARS (severe acute respiratory syndrome) and MERS (Middle East respiratory syndrome).

Studies measured the number of COVID‐19, SARS or MERS cases, how many people were infected, how quickly the virus spread, how many people died, and the costs of quarantine.

 Key results 
We included 29 studies. Ten studies focused on COVID‐19, 15 on SARS, two on SARS plus other viruses, and two on MERS. Most of the studies combined existing data to create a model (a simulation) for predicting how events might occur over time, for people in different situations (called modelling studies). The COVID‐19 studies simulated outbreaks in China, UK, South Korea, and on the cruise ship Diamond Princess. Four studies looked back on the effect of quarantine on 178,122 people involved in SARS and MERS outbreaks (called ‘cohort’ studies). The remaining studies modelled SARS and MERS outbreaks.
The modelling studies all found that simulated quarantine measures reduce the number of people with the disease and the number of deaths. With quarantine, estimates showed a minimum reduction in the number of people with the disease of 44%, and a maximum reduction of 81%. Similarly, with quarantine, estimates of the number of deaths showed a minimum reduction of 31%, and a maximum reduction of 63%. Combining quarantine with other measures, such as closing schools or social distancing, is more effective at reducing the spread of COVID‐19 than quarantine alone. The SARS and MERS studies agreed with the studies on COVID‐19. Two SARS modelling studies assessed costs. They found that the costs were lower when quarantine measures started earlier. We cannot be completely certain about the evidence we found for several reasons. The COVID‐19 studies based their models on limited data and made different assumptions about the virus (e.g. how quickly it would spread). The other studies investigated SARS and MERS so we could not assume the results would be the same for COVID‐19.

 Conclusion Despite limited evidence, all the studies found quarantine to be important in reducing the number of people infected and the number of deaths. Results showed that quarantine was most effective, and cost less, when it was started earlier. Combining quarantine with other prevention and control measures had a greater effect than quarantine alone.
This review includes evidence published up to 12 March 2020.
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              Palliative Care: the World Health Organization's global perspective.

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                Author and article information

                Contributors
                Role: Formal analysisRole: InvestigationRole: SoftwareRole: ValidationRole: Writing – original draftRole: Writing – review & editing
                Role: MethodologyRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: SupervisionRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: SupervisionRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS One
                plos
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                27 July 2021
                2021
                27 July 2021
                : 16
                : 7
                : e0254056
                Affiliations
                [1 ] Institute for General Practice, Hannover Medical School, Hanover, Germany
                [2 ] Department of Palliative Medicine, University Hospital of Cologne, Faculty of Medicine, University of Cologne, Cologne, Germany
                [3 ] Department for Palliative Medicine, University Hospital Munich, Ludwig-Maximilians-Universität, Munich, Germany
                University of the Pacific, UNITED STATES
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Author information
                https://orcid.org/0000-0002-5963-2526
                Article
                PONE-D-21-12732
                10.1371/journal.pone.0254056
                8315495
                34314417
                d3af13e1-0850-4b66-890b-c61d2141012f
                © 2021 Tielker et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 17 April 2021
                : 18 June 2021
                Page count
                Figures: 0, Tables: 5, Pages: 14
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/501100002347, Bundesministerium für Bildung und Forschung;
                Award ID: 01KX2021
                Award Recipient :
                The project PallPan is funded by the German Ministry for Education and Research (Grant Number: 01KX2021). https://www.netzwerk-universitaetsmedizin.de/projekte/pallpan The co-author NS received funding. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Medicine and Health Sciences
                Health Care
                Palliative Care
                Medicine and Health Sciences
                Epidemiology
                Pandemics
                Medicine and Health Sciences
                Health Care
                Health Care Facilities
                Nursing Homes
                Medicine and Health Sciences
                Medical Conditions
                Infectious Diseases
                Viral Diseases
                Covid 19
                Research and Analysis Methods
                Research Design
                Survey Research
                Surveys
                People and places
                Geographical locations
                Europe
                European Union
                Germany
                Medicine and Health Sciences
                Health Care
                Health Care Providers
                Physicians
                People and Places
                Population Groupings
                Professions
                Medical Personnel
                Physicians
                Medicine and Health Sciences
                Health Care
                Health Care Providers
                Custom metadata
                The data from this study cannot be shared publicly because of data protection regulations put in place by the Data Protection Commissioner. Data are available for researchers who meet the criteria for access to confidential data from the Ethics Committee of the Hannover Medical School (No. 9232_BO_K_2020) via email ( allgemeinmedizin@ 123456mh-hannover.de ).
                COVID-19

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