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The treatment situation in intensive care is characterised by a specific asymmetry in the relationship between patients and the team: Patients are particularly dependent on their environment and often show impaired consciousness and capacity to consent. This facilitates the use of coercion or enables and/or provokes it. The aim of this recommendation is to show ways to recognise patients with their wishes and needs and to integrate them into treatment concepts in the intensive care unit in order to reduce and avoid coercion whenever possible. The recommendation shows the variety of possible forms of coercion and discusses the moral standards to be considered in the ethical weighing process as well as legal conditions for justifying its use. It becomes obvious that treatment measures which may involve the use of coercion always require a careful and self-critical review of the measures in relation to the indication and the therapeutic goal. The recommendation's intention therefore is not to disapprove the use of coercion by interprofessional teams. Instead, it aims to contribute to a sensitive perception of coercion and to a critical and caring approach to formal and especially informal (indirect) coercion.Die Behandlungssituation in der Intensivmedizin ist durch eine starke Asymmetrie in der Begegnung gekennzeichnet: Patient:innen sind in besonderer Weise auf ihr Umfeld angewiesen, weisen häufig Beeinträchtigungen des Bewusstseins und der Willensbildung auf. Dies erleichtert die Anwendung von Zwang bzw. ermöglicht diesen und/oder ruft ihn hervor. Ziel dieser Handlungsempfehlung ist es, Wege aufzuzeigen, um Patient:innen mit ihren Wünschen und Bedürfnissen wahrzunehmen und sie in Behandlungskonzepte auf der Intensivstation einzubinden, um Zwang zu reduzieren und wann immer möglich zu vermeiden. Der Beitrag zeigt die Vielfalt möglicher Formen von Zwang auf und diskutiert die im ethischen Abwägungsprozess zu berücksichtigenden moralischen Maßstäben sowie rechtliche Bedingungen zur Rechtfertigung seiner Anwendung. Es wird deutlich, dass Behandlungsmaßnahmen, die die Anwendung von Zwang beinhalten können, immer einer sorgfältigen und auch selbstkritischen Überprüfung der Maßnahmen im Verhältnis zur Indikation und zum Therapieziel bedürfen. Die Handlungsempfehlung möchte daher nicht prinzipiell die Anwendung von Zwang durch die interprofessionellen Teams missbilligen, sondern sie soll vielmehr zu einer sensiblen Wahrnehmung von Zwang und zu einem kritischen und fürsorglichen Umgang mit formellem und insbesondere informellem (indirektem) Zwang beitragen.

Health Care Planning for the Final Phase of Life - an Advance Care Planning Concept in Germany

Palliative care is aimed at patients with incurable oncological and non-oncological diseases and their relatives with the aim of maintaining or improving their quality of life. In order to integrate palliative care into acute care medicine, palliative care training and continuing education for medical and nursing staff is recommended. Appropriate screening tools and standard operating procedures should be implemented to identify and address palliative care needs in emergency situations. For palliative care, established specialist palliative care services can be called upon for advice and/or cotreatment. Symptom control, treatment of malignant wounds, difficult ethical decision-making, and communication difficulties with patients, their legal representatives or relatives are the tasks of palliative care experts.Palliativmedizin richtet sich an Patienten mit inkurablen onkologischen und nichtonkologischen Erkrankungen sowie deren Angehörige mit dem Ziel, die Lebensqualität zu erhalten oder zu verbessern. Zur Integration der Palliativmedizin in die Akutmedizin wird die Palliative-Care-Fort- bzw. Weiterbildungen einiger ärztlicher und pflegerischer Mitarbeiter empfohlen. Für die Ermittlung und Umsetzung des bisher unzureichend erhobenen palliativmedizinischen Behandlungsbedarfs in Notfallsituationen sollten geeignete Screeningtools und „standard operating procedures“ implementiert werden. Für die Palliativversorgung können die zur Verfügung stehenden spezialisierten palliativmedizinischen Dienste zur Beratung und/oder Mitbehandlung hinzugezogen werden. Symptomkontrolle, Versorgung maligner Wunden, schwierige ethische Entscheidungsfindungen und Kommunikationsschwierigkeiten mit Patienten, deren rechtlichen Stellvertretern oder Angehörigen sind Aufgabenbereiche palliativmedizinischer Experten.

Since 2007, patients receiving palliative care have been entitled to specialised outpatient palliative care (SAPV). Until now, the quality of care of the SAPV was only regionally focussed or in relation to individual SAPV teams. A nationwide analysis of outcome quality is still awaited. The organisation and design of structures and processes vary greatly from region to region, which complicates a comparative assessment of implementation. One way to measure the quality of the heterogeneous structures and processes is to collect patient-reported outcomes. Here, it is possible to use symptom burden, quality of care and patient satisfaction with SAPV care, since patients' quality of life is a central focus of SAPV care. This article is part of the research project SAVOIR, which is funded by the G-BA Innovation Fund.For this prospective longitudinal survey of the outcome quality of SAPV, structured data were collected at two measurement points (t42 SAPV teams agreed to participate in the study. They recruited a total of 964 patients at measurement time tThe SAPV patients recruited from a total of nine KV regions reported a reduced symptom burden and a high level of satisfaction with SAPV and rated the quality of care provided by SAPV as high.

Palliative care is becoming increasingly important in intensive care units. The main goal of palliative treatment is to improve quality of life in patients with critical and life-threatening conditions when curative therapies can no longer be achieved. Treatment is not limited to end-of-life care, but also includes relief of distressing symptoms such as pain, nausea, vomiting, dyspnea, delirium or anxiety, as well as communication with patients and their families. Defining patient-centred goals of care together with patients, relatives and intensive care staff supports shared decision-making. Aspects of palliative care can be integrated in the ICU in different ways. The "integrative model" presumes that all patients with critical illness may benefit from palliative care principles and interventions practiced by the ICU team. The "consultative model" involves palliative care consultants in the care of ICU patients with palliative care need that may be identified using trigger criteria. This article gives an overview on different aspects of palliative care in intensive care units and provides practical advice for the implementation of palliative care in the ICU.Die Bedeutung moderner Intensivmedizin für schwerstkranke Patienten ist unbestritten. Dennoch stellt sich die Frage nach der Sinnhaftigkeit maximaler Intensivtherapie, wenn sie zwar eine Lebensverlängerung erreicht, aber die Lebensqualität stark beeinträchtigt. Mit dem Wissen und der Akzeptanz, realistische Therapieziele im Sinne des Patienten festzulegen, gewinnen palliativmedizinische Aspekte auf der Intensivstation zunehmend an Bedeutung.

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.

Role of the influence of cultural and religious beliefs on medical end-of-life decision-making Abstract. Decision-making at the end of life must encompass medical indication, therapeutic offer, patient autonomy and consent. Furthermore, physicians must reflect on whether their own cultural and religious beliefs have an influence on their decision-making process. Basic knowledge in palliative care or integration of experts in palliative care may be useful when dealing with patients at the end of life, particularly when shifting treatment goals to palliative or comfort care measures is considered or necessary. Expertise in palliative care may also be useful in the care for patients well before the end of life, for example in symptom management, wound care, communication with family or psycho-social care. Ideally, goals of care should be discussed with the patient. Decision-making includes judging, respecting individual values, caring and taking on responsibility - including responsibility for potentially wrong choices. It is imperative that respect for patient autonomy and increasingly strengthened patient competence must be reflected in physicians' reasoning about medical and ethical end-of-life decisions, as well as about empirical and normative aspects of medical indication.Zusammenfassung. Bei der Entscheidungsfindung am Lebensende sind die medizinische und ärztliche Indikation sowie der Wille des Patienten und seine Zustimmung zu einer Behandlung entscheidend. Darüber hinaus spielen die eigenen kulturellen und religiösen Überzeugungen der Ärztin / des Arztes eine Rolle, derer man sich als Behandler bewusst sein muss. In der Behandlung am Lebensende stellen palliativmedizinische Basiskenntnisse sowie die Einbeziehung palliativmedizinischer Experten eine sinnvolle Ergänzung dar. Dies gilt besonders in Behandlungssituationen, in denen eine Therapiezieländerung hin zum palliativmedizinischen Behandlungsziel erwogen wird oder bereits als notwendig erachtet wurde. Aber auch in Behandlungssituationen bei Patienten, die sich noch nicht in der letzten Lebensphase befinden, kann die Integration palliativmedizinischen Fachwissens, z. B. bei der Symptomkontrolle, Wundbehandlung, Kommunikation mit Angehörigen oder in Fragen der psychosozialen Begleitung, sinnvoll sein. Im Idealfall wird das Behandlungsziel auch für das Lebensende gemeinsam mit dem Kranken erarbeitet. Entscheidungen bedeuten immer auch Urteilsbildung, Respektierung individueller Werte, Begleitung und die Bereitschaft, Verantwortung zu übernehmen – auch dafür, dass man im Einzelfall ggf. eine falsche Entscheidung getroffen hat. Patientenautonomie und zunehmende Patientenkompetenz sind eine Aufforderung an Ärzte, medizinische und ethische Entscheidungen am Lebensende kritisch zu reflektieren sowie sich mit empirischen und normativen Aspekten der Indikationsstellung auseinanderzusetzen.

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.

Like in other countries, advance care planning (ACP) is currently being implemented in Germany as a new concept to realise valid and effective advance directives. This concept comprises processes to explore and document individual preferences for future treatment, and to honour them at a time when the person is incapacitated. ACP aims to ensure that patients will be treated according to their preferences when they are no longer capable due to acute health crises or chronic diseases. This paper gives an overview of the concept of ACP with a focus on relevant issues for emergency and intensive care medicine.Behandlung im Voraus planen (BVP) – im Englischen Advance Care Planning (ACP) – etabliert sich auch in Deutschland als ein neues Konzept zur Realisierung wirksamer Patientenverfügungen. Das Konzept beinhaltet Prozesse zur Ermittlung, Dokumentation und Umsetzung von Behandlungswünschen für den Fall, dass die Betroffenen nicht (mehr) selbst entscheiden können.

The need to regulate physician-assisted suicide (PAS) and organizations offering assisted suicide has been controversially debated in Germany. Before the German parliament voted on various drafts in November 2015, the German Association for Palliative Medicine surveyed its members on their attitudes and experiences regarding PAS.Items for the survey were derived from the literature and consented in a focus group.2005-2015 - PubMed: PAS [Title/Abstract] UND survey (all countries), grey literature. We invited 5152 members of the DGP to participate in the online/paper survey. Descriptive quantitative and content analytic qualitative analysis of data using SPSS and MaxQDA.We obtained 1811 valid data sets (response rate 36.9%). 33.7% of the participants were male, 43.6% were female, and 0.4% identifed as other. Physicians accounted for 48.5% of the respondents, 17.8% nurses, other professions 14.3%, and about 20% of the data was missing socio-demographic information. More than 90% agreed that "wishes for PAS may be ambivalent" and "are rather a wish to end an unbearable situation". Of the 833 participating physicians, 56% refused participating in PAS and 74.2% had been asked to perform PAS. PAS was actually performed by 3%. Of all participating members, 56% approved of a legal ban of organizations offering assisted suicide. More than 60% of all professions agreed that PAS is not a part of palliative care.The respondents show a broad spectrum of attitudes, only partly supporting statements of relevant bodies, such as DGP. Because many are confronted with the issue, PAS is relevant to professionals in palliative care.

People with a migration background (MB) are an important part of German society. If and how they use specialised palliative care (SPC) has not been studied. We aimed to assess the current SPC for patients with Turkish or Arabic MB (the largest group of immigrants in Germany with a shared ascribed culture) from the point of view of healthcare professionals (HCP) in Lower Saxony.All HCPs in institutions providing SPC (n = 90) were invited to participate in an anonymous online survey which contained closed and open questions about care for this patient group, characteristics of the last patient with Turkish or Arabic MB they cared for, and resources and strategies to care for these patients. The survey was analysed using descriptive statistics and qualitative content analysis.Fifty-five HCPs in SPC participated, mostly nurses aged between 40 and 60 years. One fifth had not cared for a patient with Turkish or Arabic MB during the last 12 months. Given their local population, 84.6% estimated that they cared for a lower number of patients than would be representative. In care, problems with communication as well as difficulties to interact with and manage families, and in organising and planning care were most prevalent. Only 21% of participants had access to interpreters.Patients with Turkish or Arabic MB seem to be underrepresented in SPC. The high rate of communication problems highlights the necessity of reliable and accessible interpreter services. Most difficulties were of psychosocial nature, showing how important the holistic approach of SPC is in caring for terminally ill patients with Turkish or Arabic MB.

Crisis at the end of life are exceptional challenges for patients, relatives and therapists. With respect to the individual treatment goals and the patients' autonomy, therapeutic action should be commenced in an adequate manner in order to preserve the patients' quality of life as much as possible. Advance care planning for specific critical scenarios may be helpful in order to treat patients according to their wishes and values even if they are not capable to express themselves. Furthermore, a crisis plan can define the scope of action for therapists in emergency situations. Dyspnea, pain and delirium are symptoms that may often lead to emergency calls. In such cases, pharmacological and other treatment options are available. Options for causal therapy should be checked and performed if adequate. Opioids are used to relieve pain and dyspnea. In a state of delirium, highly potent neuroleptics and atypical antipsychotics are used. For the treatment of anxiety or restlessness benzodiazepines can be prescribed. Sedative medication may reduce stress, for instance in the case of acute catastrophic bleeding. Palliative sedation is an ultima ratio concept for refractory symptoms at the end of life. Clinical practice guidelines (such as the German guideline "Palliative care for patients with incurable cancer") may provide an overview of the evidence base on symptom-guided therapy at the end of life.

Palliative medicine (or palliative care, referring to its multi-professional character) denotes a comprehensive care concept for patients suffering from incurable and progressive disease, and their relatives. Specialized support structures are necessary, including (inpatient) palliative care units, (inpatient) consultation services, and (outpatient) specialized palliative home care services. Further, research and education is mandatory in order to gain and to spread this particular expertise and attitude. This contribution focuses on the current situation and on the development of palliative care structures in Germany.

On the basis of a case study, the complex problems of an invasive therapy (gastroscopy with stentig) in an end of life situation will be demonstrated and discussed. The main problems of the 67-year-old patient with a gastric cardia carcinoma were the symptoms of nausea and vomiting, which were managed well with conservative treatment. The wish from the patient to eat was a highly ethical demand on the team of the palliative care unit. This paper shows the area of tension between the highly developed interventional endoscopic capabilities on the one hand and the reasonable treatment in end of life situations on the other.

In Germany a few specialised palliative care teams (PCTs) enable paediatric palliative care patients to stay at home in the final stage of their life. During this stage patients often experience episodes of acute symptoms requiring rapid medical intervention. In this case care-giving relatives can call emergency medical care services. The present investigation aims to show the meaning of emergency medical care services in treating paediatric palliative care patients in a home-care setting. Moreover, mental strain of emergency medical staff in paediatric medical emergencies and end-of-life care will be discussed.In a multi-centre retrospective study we analyse all paediatric emergency medical care cases of four emergency sites over a 24-month period. In particular, all cases of acute palliative care in terminal paediatric cancer patients up to the age of 14 were evaluated.In the defined period we analysed 738 paediatric emergency documents (5.7% of all emergency cases); of these we identified two (0.3%) emergency calls by paediatric palliative care patients or their caregiving relatives. In both cases there was no specialised outpatient PCT involved in the treatment of the patients or the assistance to their caregiving relatives.Our data demonstrate that emergency medical treatment is less frequently provided to paediatric than to adult palliative care patients. However, these paediatric patients also need help that is based on the principles of palliative care like adult patients do. In the context of quality standard optimisation, specialised PCTs should get more involved in paediatric palliative home and pre-hospital care, even in cases of medical emergencies in these patients. After end-of-life decisions relating to paediatric patients, psychological support to the emergency medical team seems to be both helpful and reasonable.