During humanitarian crises, such as a pandemic, healthcare systems worldwide face unknown challenges. This study aimed to explore and describe the effect of the SARS-CoV-2 pandemic on the needs of non-infected patients and family caregivers in specialist palliative care, using qualitative, semi-structured interviews. Data were analyzed using inductive content analysis, following the framework approach. Thirty-one interviews were conducted with patients/family caregivers (15/16) in palliative care units/specialist palliative home care (21/10) from June 2020 to January 2021. Well-known needs of patients and family caregivers at the end of life remained during the pandemic. Pandemic- dependent themes were (1) implications of the risk of contagion, (2) impact of the restriction of social interactions, (3) effects on the delivery of healthcare, and (4) changes in the relative’s role as family caregiver. Restriction on visits limited family caregivers’ ability to be present in palliative care units. In specialist palliative home care, family caregivers were concerned about the balance between preserving social contacts at the end of life and preventing infection. Specialist palliative care during a pandemic needs to meet both the well-known needs at the end of life and additional needs in the pandemic context. In particular, attention should be given to the needs and burden of family caregivers, which became more multifaceted with regards to the pandemic.

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The Impact of the SARS-CoV-2 Pandemic on the Needs of Non-Infected Patients and Their Families in Palliative Care—Interviews with Those Concerned

Erlebensqualitäten moralischer Belastung professionell Pflegender und die Notwendigkeit des Schutzes der moralischen Integrität – am Beispiel der COVID-19-Pandemie

Background: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care. The aim was to describe the experiences of end-of-life care for bereaved relatives in Sweden during the “first wave” and to compare the experiences for deaths due to COVID-19 with the experiences for deaths for other reasons. Methods: A random sample of addresses for 2400 people who died during March–September 2020 was retrieved from the Swedish Person Address Registry. Relatives were contacted with a questionnaire regarding their experience of end-of-life care, with a focus on communication, participation, and trust. Results: In total, 587 relatives (25% response rate) answered the questionnaire (14% COVID-19-deaths, 65% non-COVID-19-deaths, 21% uncertain). In the COVID-19 group 28% of the relatives were allowed visits without restrictions compared to 60% in the non-COVID-19 group (p < 0.01). Only 28% of the relatives in the COVID-19 group reported that the person received “enough care from physicians”, significantly fewer than the non-COVID group (65%, p < 0.01). Conclusion: Relatives’ experience of end-of-life care for persons with COVID-19 was significantly worse than relatives of persons without COVID-19, but relatives for persons without COVID-19 were also negatively affected.

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Dying during the COVID-19 Pandemic in Sweden: Relatives’ Experiences of End-of-Life Care (the CO-LIVE Study)

Zusammenfassung Hintergrund COVID-19 betrifft im ambulanten Bereich vor allem auch Palliativpatienten, die im Rahmen der spezialisierten ambulanten Palliativversorgung (SAPV) versorgt werden. Zur Vermeidung von Infektionen wurde die Implementierung von neuen Sicherheitsvorkehrungen und telemedizinischen Kommunikationsmöglichkeiten in die an der Studie beteiligten SAPV erforderlich. Ziel der Arbeit Die Studie untersucht die Auswirkungen der COVID-19-Pandemie auf die persönlichen und sozialen Probleme von Palliativpatienten und ihre Erfahrungen mit der betreuenden SAPV. Material und Methoden 20 SAPV-Patienten wurden in halbstrukturierten Telefoninterviews zu ihren Problemen im Zusammenhang mit der Pandemie und Erfahrungen mit der SAPV-Betreuung befragt. Ergebnisse Angst vor Einsamkeit und Infektion belasten Palliativpatienten sehr. Die meisten Patienten wollten Krankenhausaufenthalte wegen erhöhter Infektionsgefahr vermeiden. Schutzmaßnahmen der SAPV gaben ihnen ein Gefühl der Sicherheit und wurden trotz Einschränkung des persönlichen Kontakts akzeptiert. Moderne Kommunikationsformen waren nützlich, konnten aber den persönlichen Kontakt nicht ersetzen. Diskussion Die Pandemie führte zu Veränderungen in der SAPV und hatte Auswirkungen auf das soziale Umfeld von Palliativpatienten. Schutzmaßnahmen sind für das Sicherheitsgefühl der betreuten Palliativpatienten wichtig. Die Versorgungsqualität der an COVID-19 angepassten SAPV-Struktur wird von den Patienten meist nicht als verschlechtert wahrgenommen. Ängste vor sozialer Isolation nehmen bei den Palliativpatienten einen hohen Stellenwert ein und können durch die SAPV abgebaut werden. Der persönliche Kontakt zur SAPV kann durch moderne Kommunikationsmöglichkeiten nicht ersetzt werden, wobei die Patienten Telemedizin im Sinne einer „Notlösung“ durchaus akzeptieren. 

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SAPV-Patienten in der COVID-19-Krise

During the COVID-19 pandemic, the care of critically ill and dying patients in isolation wards, intensive care units (ICUs), and regular wards was severely impaired. In order to support physicians in communicative and palliative care skills, an e-learning tool was developed as part of the joint project “Palliative Care in Pandemic Times” (PallPan). This study investigates the feasibility of this e-learning tool. Secondly, we aim to analyze changes in knowledge and attitude upon completion of the e-learning tool. A 38-item questionnaire-based evaluation study with assessment of global and specific outcomes including ICU and non-ICU physicians was performed. In total, 24 questionnaires were included in the anonymous analysis. Feasibility was confirmed by a very high rate of overall satisfaction (94% approval), with relevance reaching 99% approval. Overall, we detected high gains in knowledge and noticeably lower gains on the attitude plane, with the highest gain in naming reasons for incorporating palliative care. The lowest learning gain on the attitude plane was observed when the participants were confronted with their own mortality. This study shows that e-learning is a feasible tool for gaining knowledge and even changing the attitudes of physicians caring for critically ill and dying patients in a self-assessment evaluation.

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Palliative Care e-Learning for Physicians Caring for Critically Ill and Dying Patients during the COVID-19 Pandemic: An Outcome Evaluation with Self-Assessed Knowledge and Attitude

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

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Ambulante Betreuung onkologischer Patienten in palliativer Behandlungssituation und ihrer Angehörigen in der COVID-19-Pandemie: Erfahrungen, Herausforderungen und Lösungsansätze niedergelassener Onkologen

Jan P. Weber

Papers

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

Ambulante Betreuung onkologischer Patienten in palliativer Behandlungssituation und ihrer Angehörigen in der COVID-19-Pandemie: Erfahrungen, Herausforderungen und Lösungsansätze niedergelassener Onkologen