An epidemiological appraisal of Berlin

Background Since the late 1950’s, a steadily increasing immigrant population in Germany is resulting in a subpopulation of aging immigrants. The German health care system needs to adjust its services—linguistically, culturally, and medically–for this subpopulation of patients. Immigrants make up over 20% of the population in Germany, yet the majority receive inadequate medical care. As many of the labor immigrants of the 1960s and 1970s are in need of hospice and palliative care (HPC), little is known about this specialized care for immigrants. This epidemiological study presents utilization of HPC facilities in Berlin with a focus on different immigrant groups. Methods A validated questionnaire was used to collect data from patients at 34 HPC institutions in Berlin over 20 months. All newly admitted patients were recruited. Anonymized data were coded and analyzed by using SPSS and compared with the population statistics of Berlin. Results 4118 questionnaires were completed and included in the analysis. At 11.4% the proportion of immigrants accessing HPC was significantly (p<0,001) below their proportion in the general Berlin population. This difference was especially seen in the age groups of 51–60 (21.46% immigrants in Berlin population, 17.7% immigrants in HPC population) and 61–70 years (16,9% vs. 13,1%). The largest ethnic groups are Turks, Russians, and Poles, with a different weighting than in the general population: Turkish immigrants were 24% of all Berlin immigrants, but only 13.6% of the study immigrant population (OR: 0.23, 95%CI: 0.18–0.29, p<0.001). Russian and Polish immigrants account for 5.6% and 9.2% in the population, but 11.5% and 24.8% in the study population respectively (Russian: OR 0.88, 95%CI: 0.66–1.16; Polish: OR 1.17, 95%CI: 0.97–1.42). Palliative care wards (PC) were used most often (16.7% immigrants of all PC patients); outpatient hospice services were used least often by immigrants (11.4%). Median age at first admission to HPC was younger in immigrants than non-immigrants: 61–70 vs. 71–80, p = 0.03. Conclusions Immigrants are underrepresented in Berlin´s HPC and immigrants on average make use of care at a younger age than non- immigrants. In this regard, Turkish immigrants in particular have the poorest utilization of HPC. These results should prompt research on Turkish immigrants, regarding access barriers, since they represent the largest immigrant group. This may be due to a lack of cultural sensitivity of the care-providers and a lack of knowledge about HPC among immigrants. In the comparison of the kinds of institutions, immigrants are less likely to access outpatient hospice services compared to PC. Apparently, PC appear to be a smaller hurdle for utilization. These results show a non-existent, but oft- cited “healthy immigrant effect” of the first generation of work immigrants, now entering old age. These findings correspond with studies suggesting increased health concerns in immigrants. Focused research is needed to promote efforts in providing adequate and fair access to HPC for all people in Berlin

Sterben dürfen im Krankenhaus

Diese qualitative Studie zeigt Widersprüche zwischen gesundheitspolitischen Überlegungen, ethisch-moralischem Anspruch, normativen Erwartungen und klinischer Praxis in der Behandlung Schwerstkranker und Sterbender. Das ärztliche Postulat vom Sterbendürfen im Krankenhaus ist ein intradisziplinärer und organisationsbezogener Appell. Es beleuchtet eine diffuse Bewusstheit der Akteure bei der Behandlung Sterbender und die stark hierarchische Organisation des deutschen Gesundheitswesens

Permission to die in the hospital

Hintergrund: Krankenhäuser sind und bleiben perspektivisch der häufigste Sterbeort in Deutschland, und der Tod wird mit der wachsenden Zahl chronisch verlaufender Erkrankungen immer seltener plötzlich eintreten. Sterbebegleitung auf Normal- und Intensivstationen eines Krankenhauses wird damit ein wichtiges Thema für alle beteiligten Akteure und ihre Zusammenarbeit sowie für die medizinische Behandlung und pflegerische Versorgung. Ausgangspunkt der Untersuchung war zudem ein identifizierter Widerspruch zwischen gesundheitspolitischen Überlegungen, öffentlicher Skandalisierung der Behandlung Sterbender und der Behandlungspraxis im Krankenhaus. Trotz der vielfachen wissenschaftlichen Belege für den Nutzen palliativmedizinischer Versorgung im gesamten Behandlungsverlauf besteht eine Forschungslücke hinsichtlich der organisatorischen und sozialen Bedingungen der Integration bzw. der Gründe für ihr Misslingen im deutschen Gesundheitswesen. Die Rolle von Ärzt*innen zeigt sich als zentral bei Behandlungsentscheidungen, auch am Lebensende. Damit erscheinen sie als Schlüsselpersonen, um die Behandlung schwerstkranker und sterbender Patient*innen im Krankenhaus zu untersuchen. Methode: Die Grounded Theory Methodologie ist Grundlage des explorativen und zirkulären Vorgehens in der Untersuchung. Den organisatorischen Kontext bilden zwei städtische Krankenhäuser mit je einer Palliativstation und einem Palliativkonsildienst. Quantitative und qualitative Kontextanalysen, 30 Leitfadeninterviews mit Ärztinnen und Ärzten aus 13 verschiedenen medizinischen Fachdisziplinen, die auf Normal- und Intensivstationen tätig sind, sowie die Ergebnisse einer Gruppendiskussion mit den interviewten Ärzt*innen bilden die Datengrundlage. Die Gruppendiskussion dient zudem als Validierungstrategie, ebenso wie eine forschungsbegleitende Studiengruppe. Ergebnisse: Im Kontext eines Akutkrankenhauses mit einer ökonomisierten „Durchlaufmedizin“ und routinierten „Arbeit im Akkord“ verunsichern Sterbende oder Langlieger als nicht heilbare Patient*innen den medizinischen Enthusiasmus. Zudem erschüttert die Behandlungspraxis die ärztlichen Ideale von Zeit und Raum für die Sterbebegleitung. Diese verunsicherte, weil uneindeutige, Behandlungssituation wird in der Palliativ-Dimension und in heterogenen Sterbebildern deutlich. Um den zentralen Behandlungsauftrag der Akutbehandlung bzw. Heilung im Krankenhaus aufrechtzuerhalten, lassen sich verschiedene ärztliche Strategien erkennen: eine begriffliche Erweiterung der Akut- und/oder Heilungsorientierung um eine „formal kurative“ Behandlung, eine diffuse, vermeidende oder einseitig auf Heilung ausgerichtete ärztliche Aufklärung von Patient*in und Angehörigen trotz Verschlechterung der Erkrankungssituation, eine Priorisierung von kurativen vor palliativen Patient*innen bei der Aufnahme, eine schnelle Verlegung Schwerstkranker oder Sterbender aus dem eigenen Arbeitsbereich oder aber die paradoxe Nicht-Nutzung eines Palliativkonsildienstes trotz formuliertem Unterstützungsbedarf. Das ärztliche Entscheiden wird auch für Sterbesituationen als zentraler Behandlungsauftrag angesehen. Patient*innenverfügungen werden für die Entscheidungsfindung als wenig hilfreich erlebt, anders als die Einschätzung der Pflegenden, die eine Therapiezieländerung oftmals einleitet. Die Sterbebegleitung und die Unterstützung der nun zunehmend in Erscheinung tretenden Angehörigen, nicht aber Therapieentscheidungen, werden im Aufgabenbereich der Pflegekräfte verortet. Die komplexen Entscheidungssituationen verweisen auf Hierarchien und eine starke Personengebundenheit, d. h. auf individuelle und strukturelle Handlungsspielräume. In der Schlüsselkategorie, dem „ärztlichen Postulat vom Sterbendürfen im Krankenhaus“, formiert sich eine Theorie der Praxis, welche die widersprüchlichen Forderungen und Begründungen für die gegenwärtige medizinische Behandlung schwerstkranker und sterbender Patient*innen im Krankenhaus aufgreift. Der vorrangig intradisziplinäre und organisationsbezogene Appell der Ärzt*innen verweist auf eine diffuse Bewusstheit in der Behandlung Sterbender und auf eine stark hierarchische Organisation des deutschen Gesundheitswesens. Diskussion: Die vielfache Fehlversorgung Sterbender im Krankenhaus ist, nicht nur im Hinweis auf den Pflegekräftemangel, verbunden mit einer prekären Arbeitssituation. Das Krankenhaus zeigt sich als wichtiger Lernort, dem eine strukturelle und organisatorische Anerkennung der Lernsituation fehlt. Die vorliegenden Befunde fordern ausgehend von der Rekonstruktion der ärztlichen Entscheidungshierarchie bei gleichzeitiger Beauftragung der Pflege als zuständig in der Sterbebegleitung zudem professionstheoretische Überlegungen heraus. Ein interdisziplinäres Missverständnis über das Behandlungsziel Lebensqualität mit seinen Auswirkungen auf die kollegiale und sektorale Zusammenarbeit sowie auf die Ärzt*in-Patient*in-Kommunikation stellt sich als deutliche Integrationshürde einer palliativen Perspektive in die Akutbehandlung dar. Forschung und Praxis sind aufgefordert, dies zu berücksichtigen. Das „ärztliche Postulat vom Sterbendürfen im Krankenhaus“ liefert einen theoretischen Beitrag für ein weiter auszuarbeitendes Sterbedispositiv.Background: Most people in Germany die in hospitals and this is not likely to change anytime soon. Given the growing number of chronic diseases, moreover, death will increasingly happen less sudden. Thus, care for dying patients in normal and intensive care units of a hospital will become an important issue for all actors involved and their collaboration as well as the medical treatment and nursing care. Another starting point for this investigation was the contradiction between healthcare policy considerations, the public scandalisation of the treatment of the dying and the care practice in hospitals. Despite ample scientific evidence suggesting that there is a clear benefit of providing palliative care throughout the course of treatment, we know much less about how best to integrate palliative care into Hospital practice both organisationally and socially, and what integration hurdles exist in the German healthcare system. There is no doubt, however, that physicians play a central role in any decision concerning treatment, even in the final stage of life. They are, therefore, the crucial group to look at if one is to examine the treatment of seriously ill and dying patients in the hospital. Method: The Grounded Theory methodology forms the basis for this explorative and circular analysis. The organizational context is represented by two municipal hospitals, each with a palliative care unit and a palliative care service. The data basis is supplied by quantitative and qualitative context analyses, 30 structured interviews with physicians from 13 different medical disciplines working on regular wards and on intensive care units and a group discussion with the interviewed physicians. The group discussion also served as a validation strategy, as does a research-accompanying study group. Results: In the context of an acute care hospital with a thoroughly economized and rationalised process and assembly-line work routine, dying people or uncurable patients with a prolonged stay are often perceived as dampening the medical enthusiasm. In addition, this treatment practice seriously questions the medical ideals of having time for patients and, ideally, offering them suitable spaces for their condition. This leads to an uncertain and ambiguous treatment situation that becomes apparent in the “palliative dimension” and in heterogeneous images of death. In order to uphold the central treatment mandate of the acute treatment or cure in the hospital, various medical strategies can be identified: a conceptual extension of the acute and/or healing orientation to include a “formally curative” treatment, a style of communication that either seeks to avoid a message about the severity of the disease or unilaterally focuses on the prospect of healing, a prioritization of curative before palliative patients at the admissions stage, a quick transfer of seriously ill or dying patients, or the paradoxical non-use of a palliative care service despite a vocal request of support by physicians. The medical decision is also considered as a central treatment order for death situations. Patient wills are found to be of little help for decision-making within the treatment process, unlike the assessment of nurses who often initiate a therapy goal change. They are responsible for the care of the dying and the support of the relatives who become increasingly more involved towards the later stages of a patient’s stay in hospital, but they have no say in decisions about therapy. This complex decision-making processes reflect both, the hierarchical structure in the hospitals and the individual and structural leeway that can be used by a variety of actors involved in the treatment. The key category, the “permission to die in the hospital”, leads to the formulation of a theory of practice that addresses the contradictory demands and justifications for the current medical treatment of seriously ill and dying hospital patients. The predominantly intradisciplinary and organizational appeal of the physicians´ points to a however diffuse awareness in the treatment of the dying and to a highly hierarchical organization of the German health care system. Discussion: The often-occurring wrong treatment of dying people is partly a result of the critical lack of nurses and the precarious work situation for many others working in hospitals. While being an important place of learning, hospitals have lacked a structural and organizational recognition of this learning situation. Based on the reconstruction of the medical decision-making hierarchy and the simultaneous expectations that nurses are to be responsible for the care of the dying, the present findings also provoke theoretical considerations regarding the professions as such. An interdisciplinary misunderstanding of the objective of quality of life with its effects on collegial and sectoral collaboration as well as on the physician-patient communication presents itself as a clear barrier against integrating a palliative perspective into acute care treatment. Research and practice are called upon to reflect on this. The medical postulate of the “permission to die in the hopital” provides a theoretical contribution to a Dispositif of dying that needs to be further elaborated

End-of-life care for immigrants in Germany. An epidemiological appraisal of Berlin.

Since the late 1950's, a steadily increasing immigrant population in Germany is resulting in a subpopulation of aging immigrants. The German health care system needs to adjust its services-linguistically, culturally, and medically-for this subpopulation of patients. Immigrants make up over 20% of the population in Germany, yet the majority receive inadequate medical care. As many of the labor immigrants of the 1960s and 1970s are in need of hospice and palliative care (HPC), little is known about this specialized care for immigrants. This epidemiological study presents utilization of HPC facilities in Berlin with a focus on different immigrant groups.A validated questionnaire was used to collect data from patients at 34 HPC institutions in Berlin over 20 months. All newly admitted patients were recruited. Anonymized data were coded and analyzed by using SPSS and compared with the population statistics of Berlin.4118 questionnaires were completed and included in the analysis. At 11.4% the proportion of immigrants accessing HPC was significantly (p<0,001) below their proportion in the general Berlin population. This difference was especially seen in the age groups of 51-60 (21.46% immigrants in Berlin population, 17.7% immigrants in HPC population) and 61-70 years (16,9% vs. 13,1%). The largest ethnic groups are Turks, Russians, and Poles, with a different weighting than in the general population: Turkish immigrants were 24% of all Berlin immigrants, but only 13.6% of the study immigrant population (OR: 0.23, 95%CI: 0.18-0.29, p<0.001). Russian and Polish immigrants account for 5.6% and 9.2% in the population, but 11.5% and 24.8% in the study population respectively (Russian: OR 0.88, 95%CI: 0.66-1.16; Polish: OR 1.17, 95%CI: 0.97-1.42). Palliative care wards (PC) were used most often (16.7% immigrants of all PC patients); outpatient hospice services were used least often by immigrants (11.4%). Median age at first admission to HPC was younger in immigrants than non-immigrants: 61-70 vs. 71-80, p = 0.03.Immigrants are underrepresented in Berlin´s HPC and immigrants on average make use of care at a younger age than non-immigrants. In this regard, Turkish immigrants in particular have the poorest utilization of HPC. These results should prompt research on Turkish immigrants, regarding access barriers, since they represent the largest immigrant group. This may be due to a lack of cultural sensitivity of the care-providers and a lack of knowledge about HPC among immigrants. In the comparison of the kinds of institutions, immigrants are less likely to access outpatient hospice services compared to PC. Apparently, PC appear to be a smaller hurdle for utilization. These results show a non-existent, but oft-cited "healthy immigrant effect" of the first generation of work immigrants, now entering old age. These findings correspond with studies suggesting increased health concerns in immigrants. Focused research is needed to promote efforts in providing adequate and fair access to HPC for all people in Berlin

Comparison of the largest immigrant groups in the Berlin population and the study population, stratified to the largest age groups.

<p>Reference group for all OR´s are their portions in the Berlin population.</p

Questionnaire: “Basic Set of Indicators for Mapping Migrant Status”.

<p>Questionnaire: “Basic Set of Indicators for Mapping Migrant Status”.</p

Numbers of immigrants in the study population according to land of origin.

<p>Numbers of immigrants in the study population according to land of origin.</p