‘It felt like a black hole, great uncertainty, but we have to take care for our patients’–Qualitative findings on the effects of the COVID-19 pandemic on specialist palliative home care

Abstract

Background The COVID-19 pandemic has affected health care systems worldwide. Multidisciplinary teams provide specialist palliative home care (SPHC) for patients with incurable, severe, progressive diseases. These patients are at the same time at high risk, if infected, highly constricted by containment measures, and dependent on support. Aim To explore i) how German SPHC teams were affected by the pandemic during the first wave, ii) which challenges they faced, and iii) which strategies helped to handle the consequences of the COVID-19 pandemic for providing good SPHC. Method Four focus groups (with representatives of 18 SPHC teams) and five guided interviews with stakeholders were conducted and analysed using qualitative content analysis. Results Seven key categories emerged from the data. A category in the background describes dependence on organizational characteristics (e.g. sponsorship), which varied by regional factors. Information management was a challenge to SPHC teams, as they had to collect, interpret and adapt, and disseminate information. They reported a shift in patient care because of the COVID-19 pandemic, due to restricted home visits, visitation ban in nursing homes, and difficulties for hospital, hospice and nursing home admissions. Measures to reduce risk of infection impeded teamwork. Teams relied upon their local networks in crisis management, but felt often overlooked by local health authorities. Their respective SPHC state associations supported them in information management and exchange. Discussion The pandemic has severely impacted home care for especially vulnerable seriously ill and dying people. A good network with local health providers and authorities could help to harmonize local regulations and ensure quality care for all patient groups. SPHC teams could play an important role in caring for palliative patients with COVID-19 who are not admitted to a hospital due to preferences or resources.

Development of a national strategy with recommendations for the care of seriously ill and dying people and their relatives in pandemics: A modified Delphi study

“…9 The initial recommendations emerged from 16 primary studies conducted by the PallPan consortium, which describe and explore the provision of palliative care during the first and second wave of the pandemic in Germany. 8,[10][11][12] In the end of March 2021, a first draft was finalized with 34 recommendations. Each recommendation was composed of one introductory statement with following What this paper adds • • Currently, a consistent national strategy for the care of seriously ill and dying people and their relatives during the pandemic is lacking in Germany.…”

“… 9 The initial recommendations emerged from 16 primary studies conducted by the PallPan consortium, which describe and explore the provision of palliative care during the first and second wave of the pandemic in Germany. 8 , 10 – 12…”

Kooperation und Konkurrenz – Eine Befragung ambulanter Hospizdienste zur Zusammenarbeit mit der SAPV

“…Dass die Arbeit ambulanter Hospizdienste auch von SAPV-Teams als wichtig erachtet wird, zeigt sich in jüngerer Zeit unter anderem dadurch, dass die Einschränkung ihrer Handlungsmöglichkeiten während der Corona-Pandemie 23 24 von den SAPV-Teams als sehr beeinträchtigend empfunden wurde 25 .…”

Specialist Palliative Care Consultations in COVID-19 Patients in the ICU—A Retrospective Analysis of Patient Characteristics and Symptoms at a German University Hospital

“…Right at the beginning of the pandemic, the constant demand for inpatient PC was assessed, and the sPC teams responded to the pandemic situation, e.g., using digital telehealthcare approaches [ 13 , 14 , 15 , 16 , 17 ]. However, the general PC and sPC infrastructure also suffered, e.g., through staff shortages, strict visiting regulations, impaired communication within the team and with patients and their families [ 18 , 19 , 20 , 21 , 22 , 23 , 24 ]. In addition, some sPC units and hospices were closed [ 13 , 21 ].…”