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There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An “evidence-to-decision” framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available., There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

Background: During the COVID-19 pandemic, it has become apparent that palliative care has dynamically adapted to the care of dying patients with and without COVID-19 and has developed new forms of collaboration. Evaluation is needed to assess which innovations should be integrated into future pandemic management. Aim: To explore the experiences of stakeholders and staff in implementing and operating an ad hoc unit delivering acute palliative care. What lessons were learned? Design: Qualitative interview study (German Clinical Trials Register; identifier 22,473) with qualitative content analysis. Setting/participants: During the first wave of the pandemic, the University Medical Center Freiburg (Germany) established an ad hoc unit delivering acute palliative care for COVID-19 patients likely to die. Nurses from non-palliative areas and the specialist palliative care team formed a new team working together there. Twenty-nine individuals from management and staff of this unit were interviewed. Results: Patient care and teamwork were rated positively. Joint familiarization, bedside teaching, and team/management support were evaluated as core elements for success. Challenges for the nurses from non-palliative settings included adapting to palliative care routines and culture of care. The palliative care team had to adjust the high standards of palliative care to pandemic conditions. Due to sufficient hospital-wide capacity, only three COVID-19 patients were treated, significantly fewer than anticipated at planning. Conclusions: Results show the feasibility of an ad hoc COVID-19 acute palliative care unit. In the event of capacity constraints, such a unit can be a viable part of future pandemic management.

The German Association of Palliative Care developed an evidence-based guideline about the management of malignant wounds in adult patients with incurable cancer. There is a lack of evidence-based guidelines about fungating wounds and a confusing wide range of available wound dressings. The goal of the guideline is to reduce the suffering of patients with malignant wounds and stabilize or improve their quality of life. The guideline is constructed following the German Instrument for Methodological Guideline Appraisal (DELBI): A systematic review was carried out for guidelines and reviews. A wound expert group discussed these research findings and suggested recommendations which were adapted and consented by representatives of 62 medical and health professionals associations. The guideline has 34 recommendations, thereof nine (26%) are evidence based with an evidence level from 2+ to 4 (according to SIGN). The assessment chapter comprises specific assessment tools for malignant wounds, odor and wound-related quality of life. Three recommendations address the psychosocial support of patients and their family caregivers and aim to reduce the impact of the wound on their emotional wellbeing, caregiver burden and social participation. The pain recommendations focus on a preventive atraumatic dressing change, positioning, systemic pain medication (anticipated, rescue and baseline) and local application of morphine or local anesthetics. The guideline gives recommendations on odor management (metronidazole, active coal and antiseptic dressings) and management of exudate (super absorber). The recommendations on prevention and management of bleeding (antifibrinolytica, haemostyptica) are vital for patients and caregivers. This guideline is one of the first evidence-based and consented guideline on malignant wound care and has the potential to improve the palliation of patients who suffer from there malignant wounds.

Background: The SARS-CoV-2 pandemic is a constant challenge for health care systems, also in Germany. Care of seriously ill and dying people and their relatives is often neglected and suffering increased due to sub-optimal symptom management, visiting restrictions and lonely dying. The project Palliative Care in Pandemics (PallPan) intended to develop a national strategy including evidence- and consensus-based recommendations for the care of seriously ill and dying people and their relatives during pandemic times in Germany. Aim: To reach consensus on evidence-based recommendations for the care of seriously ill and dying people and their relatives in pandemics. Methods: Three-step consensus process comprising two online Delphi rounds and an expert workshop conducted from April to June 2021. One hundred twenty experts from various areas of healthcare, administration, and politics in Germany were included. Results: During the consensus-process, pre-formulated evidence-based recommendations were refined step-by-step. This resulted in consensus on 33 recommendations on the topics of supporting patients and their relatives, supporting staff, and supporting and maintaining structures and provision of palliative care. The recommendations address professional carers and various responsibilities on a governmental, federal state and municipal level, and in healthcare facilities. Conclusion: We provide evidence and consensus-based recommendations for the care of seriously ill and dying people and their relatives in pandemics in Germany. This is an important step towards a pandemic preparedness and hopefully improves the future palliative care response to pandemics.

Background: Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life. Aim: Exploring bereaved relatives' experiences of end-of-life care during the SARS-CoV2 pandemic. Design: Qualitative interview study with bereaved relatives. Participants: Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2. Results: Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively. Conclusions: Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics.

Background COVID-19 is a severe disease with a high need for intensive care treatment and a high mortality rate in hospitalized patients. The objective of this study was to describe and compare the clinical characteristics and the management of patients dying with SARS-CoV-2 infection in the acute medical and intensive care setting. Methods Descriptive analysis of dying patients enrolled in the Lean European Open Survey on SARS-CoV-2 Infected Patients (LEOSS), a non-interventional cohort study, between March 18 and November 18, 2020. Symptoms, comorbidities and management of patients, including palliative care involvement, were compared between general ward and intensive care unit (ICU) by univariate analysis. Results 580/4310 (13%) SARS-CoV-2 infected patients died. Among 580 patients 67% were treated on ICU and 33% on a general ward. The spectrum of comorbidities and symptoms was broad with more comorbidities (>= four comorbidities: 52% versus 25%) and a higher age distribution (>65 years: 98% versus 70%) in patients on the general ward. 69% of patients were in an at least complicated phase at diagnosis of the SARS-CoV-2 infection with a higher proportion of patients in a critical phase or dying the day of diagnosis treated on ICU (36% versus 11%). While most patients admitted to ICU came from home (71%), patients treated on the general ward came likewise from home and nursing home (44% respectively) and were more frequently on palliative care before admission (29% versus 7%). A palliative care team was involved in dying patients in 15%. Personal contacts were limited but more often documented in patients treated on ICU (68% versus 47%). Conclusion Patients dying with SARS-CoV-2 infection suffer from high symptom burden and often deteriorate early with a demand for ICU treatment. Therefor a demand for palliative care expertise with early involvement seems to exist.

Background Today, guideline-based care for patients with advanced cancer includes regular assessment of needs, not only for patients, but also for their family caregivers. Objectives Identification, evaluation and short description of German validated self-assessment instruments for needs assessment of family caregivers that can be used in daily practice. Materials and methods This narrative review is based on a syntax-based systematic literature search in PubMed (November 2021). Results The literature search identified 525 articles dealing with needs assessment for family caregivers. A multistep, criterion-referenced process identified 12 self-assessment instruments. These 12 capture (partly) the needs of family caregivers in terms of overall burden, psychosocial burden and psychopathological symptoms, quality of life, and support needs. They are available in German, validated, practicable in daily use, and easily accessible. The instruments-including their short versions-are presented with relevant information on use, target parameters, author references, availability, and evaluation. Conclusion This article can be helpful for practitioners wishing to implement a guideline-compliant, regular needs assessment of caregivers and to promote the provision of concrete support services. However, these instruments only cover individual aspects of possible needs of caregivers and it remains to be assessed how the 12 instruments can be combined for routine use or how a selection can be made.