Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study)

Pasman, H. Roeline W.; Korfage, Ida J.; Witkamp, Erica; Zee, Masha; Lent, Liza G. G. van; Goossensen, Anne; Heide, Agnes van der

doi:10.1177/02692163211003778

Cited by 42 publications

(35 citation statements)

References 24 publications

(40 reference statements)

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“…The total depression subscale score was categorised into normal (0-4), mild (5-6, moderate (7-10), severe (11)(12)(13) and extremely severe depression (14+). The total anxiety subscale was divided into normal (0-3), mild (4-5), moderate (6-7), severe (8)(9) and extremely severe anxiety (10+). The total stress subscale score was divided into normal (0-7), mild 8-9), moderate (10-12), severe (13)(14)(15)(16) and extremely severe stress (17+).…”

Section: Discussionmentioning

confidence: 99%

“…These questions were taken from the international study 'Experience of end-of-life care during the COVID-19 crisis' of the joined centres of expertise palliative care and concern the following topics. 9 Topics that were evaluated were worries (scale: yes/no) about the own health, the health of partner, children, family or friends, about the financial situation, or home situation, and worries regarding relationships. Fear (scale: yes, no, a little) was assessed with respect to getting infected themselves, fear of Intensive Care Unit (ICU) admission, or of dying, and fear of loneliness if ill. Social support was assessed using the following questions (scale: never, seldom, sometimes, often): I missed company, I felt connected with people, there were people I could call on, and I had the feeling that people really understood me.…”

Section: Study Parametersmentioning

confidence: 99%

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Healthcare use during COVID-19 and the effect on psychological distress in patients with chronic cardiopulmonary disorders in the Netherlands: a cross-sectional study

et al. 2021

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ObjectivesThe COVID-19 pandemic caused a massive shift in the focus of healthcare. Such changes could have affected health status and mental health in vulnerable patient groups. We aimed to investigate whether patients with chronic pulmonary and cardiac diseases had experienced high levels of psychological distress during the COVID-19 pandemic in the Netherlands.DesignA cross-sectional study.SettingCOVID-19 pandemic-related changes in healthcare use, health status and psychological distress were investigated among patients with chronic obstructive pulmonary disease (COPD), pulmonary fibrosis (PF) and congestive heart failure (CHF), using an online nationwide survey.Participants680 patients completed the survey. COPD was the most often reported diagnosis 334 (49%), followed by congestive heart failure 219 (32%) and PF 44 (7%). There were 79 (12%) patients with primary diagnosis ‘other’ than chronic cardiopulmonary disease, who also completed this survey.InterventionsPsychological distress was assessed via the DASS-21 score (Depression Anxiety Stress Scale). Moreover, specific worries and anxieties regarding COVID-19 were explored.ResultsThe frequency of contact with healthcare professionals changed in 52%. Changes in treatment were reported in 52%. Deterioration in health status was self-reported in 39%. Moderate to extremely severe levels of depression, anxiety and stress was observed in 25.8%, 28.5% and 14%, respectively. Over 70% reported specific worries and anxieties, such as about their own health and fear of being alone. Both the deterioration in health status and increased levels of anxiety were significantly (p<0.001, p<0.006) associated with changes in treatment. Exploratory analyses indicated that lack of social support may further increase anxiety.ConclusionHealthcare use changed during the COVID-19 pandemic in the Netherlands. It was associated with a decrease in health status, and increased psychological stress among patients with chronic cardiopulmonary disorders. Provision of healthcare should be more sensitive to the mental health needs of these patients during subsequent COVID-19 waves.

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Section: Discussionmentioning

confidence: 99%

Section: Study Parametersmentioning

confidence: 99%

Healthcare use during COVID-19 and the effect on psychological distress in patients with chronic cardiopulmonary disorders in the Netherlands: a cross-sectional study

et al. 2021

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“…PallPan aims to develop and consent a national strategy for the care of seriously ill and dying patients to ensure future pandemic preparedness. Additionally, this study was conducted jointly with the CO-LIVE-study [12] on end-of-life care practices as provided during the first peak of the pandemic in different European healthcare settings. Results from Germany are presented.…”

Section: Methodsmentioning

confidence: 99%

“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

Schloesser

Simon

Pauli

et al. 2021

BMC Health Serv Res

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Background During the SARS-CoV2 pandemic, protection measures, as well as visiting restrictions, had a severe impact on seriously ill and dying patients and their relatives. The study aims to describe the experiences of bereaved relatives of patients who died during the SARS-CoV2 pandemic, regardless of whether patients were infected with SARS-CoV2 or not. As part of this, experiences related to patients’ end-of-life care, saying goodbye, visiting restrictions and communication with the healthcare team were assessed. Methods An open observational post-bereavement online survey with free text options was conducted with 81 bereaved relatives from people who died during the pandemic in Germany, with and without SARS-CoV2 diagnosis. Results 67/81 of the bereaved relatives were female, with a mean age of 57.2 years. 50/81 decedents were women, with a mean age of 82.4 years. The main underlying diseases causing death were cardiovascular diseases or cancer. Only 7/81 of the patients were infected with SARS-CoV2. 58/81 of the relatives felt burdened by the visiting restrictions and 60/81 suffered from pandemic-related stress. 10 of the patients died alone due to visiting restrictions. The burden for relatives in the hospital setting was higher compared to relatives of patients who died at home. 45/81 and 44/81 relatives respectively reported that physicians and nurses had time to discuss the patient’s condition. Nevertheless, relatives reported a lack of proactive communication from the healthcare professionals. Conclusions Visits of relatives play a major role in the care of the dying and have an impact on the bereavement of relatives. Visits must be facilitated, allowing physical contact. Additionally, virtual contact with the patients and open, empathetic communication on the part of healthcare professionals is needed. Trial registration German Clinical Trials Register (DRKS00023552).

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“…Die Versorgung Sterbender unter den Bedingungen der Kontakteinschränkungen wurde z. B. auch in den Niederlanden von den Pflegenden als problematisch und deutlich optimierbar beschrieben [ 14 ].…”

Section: Diskussionunclassified

Entscheidungen treffen in Pandemiezeiten

et al. 2022

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Zusammenfassung Hintergrund In der ersten Pandemiewelle im Frühjahr 2020 sind in den stationären Langzeitpflegeeinrichtungen überproportional viele Bewohner*innen und Mitarbeiter*innen an COVID-19 erkrankt und hatten den höchsten Anteil im Ausbruchsgeschehen. Leitungspersonen stationärer Altenpflegeeinrichtungen mussten pandemiebedingt teilweise täglich neue eigene Entscheidungen treffen sowie Entscheidungen übergeordneter Stellen interpretieren und integrieren. Ziel der Arbeit Ziel war es zu beschreiben, welche Entscheidungen im Umgang mit der COVID-19-Pandemie von Leitungspersonen stationärer Altenpflegeeinrichtungen zu treffen waren, und welche Konsequenzen sich daraus ergaben. Material und Methoden Es wurde ein qualitatives multizentrisches Querschnittdesign gewählt. Die Datenerhebung fand mittels semistrukturierter Telefoninterviews statt. Die aufgezeichneten Audiodaten wurden transkribiert, mittels Framework Analysis analysiert und in „peer debriefings“ reflektiert. Ergebnisse Es konnten 78 Interviews in 43 Pflegeeinrichtungen geführt werden. Es wurden 3 Hauptthemen mit 10 Subthemen identifiziert: Entscheidungen zu sozialer Teilhabe; Entscheidungen zu Quarantäne und Isolation und Anpassen des Personaleinsatzes. Diskussion Gebraucht werden klarere Information und Anordnungen zur Umsetzung von Maßnahmen, z. B. durch bundesweit einheitliche Vorgaben. In der Informationspolitik werden auch die Gesundheitsämter in der Pflicht gesehen. Konsequenzen ihrer Entscheidungen waren für die Leitungspersonen kaum absehbar und von Unsicherheit geprägt. Verantwortlichkeiten für und Konsequenzen von Entscheidungen in der Pandemie sollten weiter evaluiert werden, um Leitungspersonen für Krisenzeiten zu stärken.

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Dying in times of the coronavirus: An online survey among healthcare professionals about end-of-life care for patients dying with and without COVID-19 (the CO-LIVE study)

Cited by 42 publications

References 24 publications

Healthcare use during COVID-19 and the effect on psychological distress in patients with chronic cardiopulmonary disorders in the Netherlands: a cross-sectional study

Healthcare use during COVID-19 and the effect on psychological distress in patients with chronic cardiopulmonary disorders in the Netherlands: a cross-sectional study

“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

Entscheidungen treffen in Pandemiezeiten

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