BackgroundMigrants seem to be underrepresented in palliative care in Germany. Access barriers and challenges in care remain unclear. We aimed to provide a comprehensive insight into palliative care for migrants, using expert interviews.MethodsInterviews with experts on palliative and general health care for migrants were audiotaped and transcribed. Data analysis followed a qualitative content analysis method for expert interviews proposed by Meuser and Nagel.ResultsIn total, 13 experts from various fields (palliative and hospice care, other care, research and training) were interviewed. Experts identified access barriers on the health care system and the patient level as well as the sociopolitical level. Services don’t address migrants, who may use parallel structures. Patients may distrust the health care system, be oriented towards their home country and expect the family to care for them. In care, poor adaptation and inflexibility of health care services regarding needs of migrant patients because of scarce resources, patients’ preferences which may contradict professionals' values, and communication both on the verbal and nonverbal level were identified as the main challenges. Conflicts between patients, families and professionals are at risk to be interpreted exclusively as cultural conflicts. Palliative care providers should use skilled interpreters instead of family interpreters or unskilled staff members, and focus on training cultural competence. Furthermore, intercultural teams could enhance palliative care provision for migrants.ConclusionsThough needs and wishes of migrant patients are often found to be similar to those of non-migrant patients, there are migration-specific aspects that can influence care provision at the end of life. Migration should be regarded as a biographical experience that has a severe and ongoing impact on the life of an individual and their family. Language barriers have to be considered, especially regarding patients' right to informed decision making. The reimbursement of interpreters in health care remains an open question.Electronic supplementary materialThe online version of this article (10.1186/s12904-019-0392-y) contains supplementary material, which is available to authorized users.

Zusammenfassung Hintergrund Das Angebot an Palliativversorgung hat in Deutschland stark zugenommen. Weitgehend unbekannt ist, wie viele Menschen am Lebensende welche palliativen Versorgungsformen in Anspruch nehmen und welche regionalen Unterschiede bestehen. Methode Retrospektive Kohortenstudie mit GKV-Routinedaten (BARMER) über Versicherte mit Sterbedatum im Jahr 2016: Anhand einer mindestens einmalig abgerechneten Leistung in den letzten 6 Lebensmonaten wurde die Inanspruchnahme allgemeiner ambulanter Palliativversorgung (AAPV), spezialisierter ambulanter Palliativversorgung (SAPV) sowie stationärer Palliativ- und Hospizversorgung ermittelt. Erstmals wurden auch Abrechnungsziffern kassenärztlicher Vereinigungen und selektivvertragliche Sonderziffern für palliativmedizinische Leistungen sowie SAPV-Leistungsabrechnungen herangezogen. Ergebnisse Von den 95.962 Verstorbenen der Studienpopulation wurden bundesdurchschnittlich 32,7 % palliativ versorgt, mit Schwankungen zwischen 26,4 % in Bremen und 40,8 % in Bayern. AAPV-Leistungen wurden bei 24,4 % abgerechnet (16,9 % in Brandenburg bis 34,1 % in Bayern). SAPV-Leistungen erhielten 13,1 % (6,3 % in Rheinland-Pfalz bis 18,9 % in Brandenburg bzw. 22,9 % in Westfalen-Lippe mit abweichender SAPV-Praxis). Stationär palliativmedizinisch versorgt wurden 8,1 % (6,7 % in Schleswig-Holstein/Hessen bis 13,0 % in Thüringen), Hospizleistungen wurden für 3,3 % abgerechnet (1,6 % in Bremen bis 5,6 % in Berlin). Diskussion SAPV wird häufiger in Anspruch genommen als bisher berichtet, AAPV ist rückläufig. Die jeweilige Inanspruchnahme scheint weniger durch objektiven Bedarf als durch regionalspezifische Rahmenbedingungen begründet. Die Weiterentwicklung der Palliativversorgung sollte zukünftig neben Bedarfskriterien mehr an Outcomes sowie dafür relevanten Rahmenbedingungen orientiert werden.

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.

Background: General Practitioners (GPs) are the main providers of primary palliative care (PPC). At the same time they are the main initiators of specialised palliative homecare (SPHC). In Germany, little is known about factors which influence GPs in their involvement of SPHC. Aim of our study is to identify factors that drive GPs to give value to and involve SPHC. Methods: A cross-sectional survey was performed. In 2018, questionnaires were mailed to 6000 randomly selected GPs from eight German federal states, focusing on the extent of GPs' palliative care activities and their involvement of SPHC. Results: With a response rate of 19.4% and exclusion of GPs working in SPHC-teams, n = 1026 questionnaires were appropriate for analysis. GPs valued SPHC support as the most "important/very important" for both "technical/ invasive treatment measures" (95%) and availability outside practice opening hours (92%). The most relevant factor influencing perceived SPHC-importance was GPs' self-reported extent of engagement in palliative care (β = − 0.283; CI 95% = − 0.384;−0.182), followed by the perceived quality of utilised SPHC (β = 0.119; CI 95% = 0.048;0.190), involvement in treatment of palliative patients after SPHC initiation (β = 0.088; CI 95% = 0.042; 0.134), and conviction that palliative care should be a central part of GPs' work (β = − 0.062; CI 95% = − 0.116; −0.008). Perceived SPHC-importance is also associated with SPHC-referrals (β =0.138; p < 0.001). The lower the engagement of GPs in palliative care, the more they involve SPHC and vice versa. Conclusions: GPs with low reported activity in palliative care are more likely to initialise SPHC for palliative care activities they do not deliver themselves for various reasons, which might mean that the involvement of SPHC is substitutive instead of complementary to primary palliative care. This finding and its interpretation should be given more attention in the future policy framework for (specialised) palliative homecare.

Background In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program ‘Palliative care in Pandemics’ (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). Methods Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. Discussion For a future “pandemic preparedness” national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

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BackgroundSince 2007, the German statutory health insurance covers Specialized Outpatient Palliative Care (SAPV). SAPV offers team-based home care for patients with advanced and progressive disease, complex symptoms and life expectancy limited to days, weeks or months. The introduction of SAPV is ruled by a directive (SAPV directive). Within this regulation, SAPV delivery models can and do differ regarding team structures, financing models, cooperation with other care professionals and processes of care. The research project SAVOIR is funded by G-BA’s German Innovations Fund to evaluate the implementation of the SAPV directive.MethodsThe processes, content and quality of SAPV will be evaluated from the perspectives of patients, SAPV teams, general practitioners and other care givers and payers. The influence of different contracts, team and network structures and regional and geographic settings on processes and results including patient-reported outcomes will be analyzed in five subprojects: [1] structural characteristics of SAPV and their impact on patient care, [2] quality of care from the perspective of patients, [3] quality of care from the perspective of SAPV teams, hospices, ambulatory nursing services, nursing homes and other care givers, content and extent of care from [4] the perspective of General Practitioners and [5] from the perspective of payers.The evaluation will be based on different types of data: team and organizational structures, treatment data based on routine documentation with electronic medical record systems, prospective assessment of patient-reported outcomes in a sample of SAPV teams, qualitative interviews with other stakeholders like nursing and hospice services, a survey in general practitioners and a retrospective analysis of claims data of all SAPV patients, covered by the health insurance fund BARMER in 2016.DiscussionData analysis will allow identification of variables, associated with quality of SAPV. Based on these findings, the SAVOIR study group will develop recommendations for the Federal Joint Committee for a revision of the SAPV directive.Trial registrationGerman Clinical Trials Register (DRKS): DRKS00013949 (retrospectively registered, 14.03.2018), DRKS00014726 (14.05.2018), DRKS00014730 (30.05.2018). Subproject 3 is an interview study with professional caregivers and therefore not registered in DRKS as a clinical study.

Since 2007, patients with severe advanced life-limiting illnesses and high, complex symptom burdens have a right to receive specialized outpatient palliative care (SAPV). Multi-professional teams with heterogeneous organizational structures provide care in cooperation with primary care givers, not limited to cancer patients. The aim of SAPV is to foster patient's autonomy and quality of life. SAPV can be provided as counseling of patient and care givers, coordination of care, additional supportive and full care provision. While the basis of SAPV provision is regulated by a SAPV directive, different contracts between care providers and health care insurances regulate organization, cooperation, definition of care levels, service provision and compensation. Some regions have model contracts that are binding for all SAPV teams in the area; in other regions teams negotiate e. g. compensation, individually with insurances. The article gives an overview of the regulations regarding SAPV.