B. Alt-Epping

Non-cancer patients in specialized palliative care in Germany: what are the problems?

To determine the role of non-cancer palliative care in inpatient services in Germany, data from the Hospice and Palliative Care Evaluation (HOPE) were analysed. Since 1999, a three-month census has been conducted annually in German palliative care units. Pooled data from 2002–2005 were tested for differences between non-cancer patients (NCs) and cancer patients (Cs). A total of 4182 patients (NC: 3.5%; C: 96.5%) were documented; functional status (using Eastern Cooperative Oncology Group (ECOG) measures) in NCs was lower compared to Cs (p = 0.009). NCs suffered more often from dyspnoea (40%; C: 29%; p = 0.004), weakness (92,3%; C: 84,5%; p = 0.011) and tiredness (75.4%; C: 66.7%; p = 0.03) and less from nausea (17.1%; C: 28.9%; p = 0.002), vomiting (8.2%; C: 19.4%; p = 0.001) or loss of appetite (55.5%; C: 67.9%; p = 0.002). There were no differences in pain and constipation. Other problems (nursing, psychological) were more frequent for NCs, in particular the need for support in the activities of daily life (90.3%; C: 72.8%; p < 0.001) and disorientation/confusion (32.1%; C: 17.2%; p < 0.001). There were no differences in social problems. NCs are still rare in specialized inpatient palliative care institutions in Germany. The palliative care needs in patients with non-malignant disease will challenge the health care system as the workload for these services will grow over proportionally.

Der Wunsch des Patienten - ein eigenständiger normativer Faktor in der klinischen Therapieentscheidung?

ZusammenfassungKlinische Therapieentscheidungen werden zumeist auf dem Boden einer medizinischen (bzw. ärztlichen) Indikationsstellung und der entsprechenden informierten Zustimmung des Patienten zu der vorgeschlagenen Behandlungsmaßnahme gefällt. Das Recht des Patienten, eine Behandlungsmaßnahme abzulehnen, ist in der juristischen und ethischen Bewertung breit abgesichert. Hingegen ist unklar, welche Rolle ein (positiv geäußerter) Wunsch des Patienten oder gar seiner Angehörigen nach einer bestimmten Behandlung im normativen Entscheidungsprozess spielen sollte, wenn überhaupt. Dieser Beitrag erörtert den Stellenwert des eigenständigen Patientenwunsches aus studienbezogener, klinischer und normativer Sicht. Ein authentisches Fallbeispiel verdeutlicht das Spektrum zugrunde liegender Autonomiekonzepte und das Dilemma divergierender Bewertungsmaßstäbe zwischen Arzt und Patient in der Tumortherapie und Palliativmedizin. Der Beitrag zeigt auf, wie bestehende Konzepte von Autonomie und Indikation genutzt werden können, um einerseits den Behandlungswunsch eines Patienten konkret in den Entscheidungsprozess einzubeziehen, andererseits eine klare Abgrenzung zu einer unreflektierten „wunscherfüllenden Medizin“ aufrecht zu erhalten.AbstractDefinition of the problem Therapeutic decision making generally relies on a given underlying medical indication and the patient’s informed consent. So far, the concept of medical indication has been analyzed and operationalized for clinical purposes by medical ethics, and the concept of the patient’s informed consent is broadly secured by legislation and clinical and ethical guidelines. Informed consent implies thorough and appropriate delivery of information and an according treatment option communicated to the patient, who can accept or refuse this offer. Within this concept of medical decision making, it is under debate in medical ethics, to what extent the patient’s (or the relatives’) desire for certain treatment options should play a role, if at all. Arguments and conclusions This article discusses the significance of the patients’ desire as an independent normative factor in medical decision making, besides ascertaining the underlying medical indication and the patient’s informed consent. A case report illustrates the spectrum of concepts of autonomy, and points to the dilemma that might result on a diverging appraisal on medical usefulness and futility between patient and physician in cancer care and palliative care. The case report finally tries to incorporate the patient’s desire as a relevant co-factor into conventional concepts of therapeutic decision making.

Palliativmedizinische Konzepte bei nicht-onkologischen Grunderkrankungen

Mit dem Begriff Palliativmedizin verbindet man derzeit vor allem die Betreuung von Patienten mit weit fortgeschritten Tumorerkrankungen. Die Definition der Palliativmedizin hingegen beschränkt sich nicht auf eine spezielle Krankheitsgruppe. So spricht die Weltgesundheitsorganisation (WHO) in ihrer Definition zu Palliativmedizin von einem Ansatz zur Verbesserung der Lebensqualität von Patienten und ihren Familien, die mit einer lebensbedrohlichen Erkrankung konfrontiert sind (http://www5.who.int/cancer). Die Deutsche Gesellschaft für Palliativmedizin definiert Palliativmedizin als aktive, ganzheitliche Behandlung von Patienten mit einer nicht heilbaren, progredienten und weit fortgeschrittenen Erkrankung mit begrenzter Lebenserwartung (www.dgpalliativmedizin.de). Auch die für die Palliativmedizin relevanten Grundsätze der Bundesärztekammer zur Sterbebegleitung (www. bundesaerztekammer.de/downloads/Sterbebegl 2004.pdf) zielen nicht auf eine bestimmte Grunderkrankung ab.

Symptoms of the oral cavity and their association with local microbiological and clinical findings—a prospective survey in palliative care

PurposeSymptoms of the oral cavity clearly encompass more than radiation or chemotherapy-induced mucositis. Still, the burden of oral symptoms in palliative care has hardly been addressed directly, and considerations towards underlying disease processes have often been extrapolated from oncology patients.MethodsWe therefore conducted a prospective explorative survey with pilot character on patients on a specialized palliative care unit, describing symptom pattern (self assessment), clinical signs, bacteriological, mycological and virological findings, and correlating features of clinical history.ResultsTaste disturbances, dry mouth and the presence of Candida were found to be the most prevalent and correlating items. The broad spectrum of further symptoms, signs and findings did not show relevant correlations and did not permit any unilateral causal attributions.ConclusionsApart from the described focus on Candida colonisation/infections, a symptom-guided polypragmatic approach therefore seems to be justifiable for patients with oral symptoms in palliative care.

Schmerztherapie in der Onkologie

BACKGROUND Pain is one of the most prevalent and distressing symptoms of patients suffering from cancer. In the field of oncology comprehensive expertise is pursued not only with respect to the administration of anticancer treatment but to all fields that relate to the needs of cancer patients. However, the results of studies have revealed persisting and relevant deficits in pain therapy in the setting of oncology. MATERIALS AND METHODS An online survey was performed involving all members of the German Society for Hematology and Medical Oncology (DGHO) with respect to training and continuing education in pain therapy, the relevance for routine oncology and knowledge, to determine the level of expertise in pain therapy and the assessment of tumor-specific therapy. RESULTS A total of 183 out of 1,962 questionnaires could be evaluated. Oncologists are often engaged in pain therapy and 80 % of the respondents perceived themselves as being primarily responsible for pain control. Education and assessment were identified as barriers to sufficient pain therapy. Case vignettes revealed only few relevant therapeutic misinterpretations. CONCLUSION This first survey of German oncologists exploring expertise in cancer pain therapy, showed similar problems in education and pain assessment as previous international studies. Despite the claimed responsibility for pain management, there were a small but relevant number of oncologists who showed serious therapeutic misinterpretations in case studies.

'Curative' treatments and palliative care: the lack of consensus.

Purpose of review A survey was performed to assess whether authors who report about palliative treatments or palliative care share a common understanding of ‘curative’ treatments. Recent findings Of 107 authors from publications about cancer who used both ‘palliative’ and ‘curative’ in the same abstract, 42 (39%) responded. The majority (n = 24; 57%) understood ‘curative’ treatments as ‘aimed at complete absence of disease for the rest of life’, but 43% (n = 18) did not share this view. For example, 19% (n = 7) stated that the term describes cancer-directed therapy for prolongation of life or even regardless of the aspired goal. Summary In the care for cancer patients, unambiguous terminology is essential for the participatory and interdisciplinary decision-making process. Clinicians, researchers and policy makers should be aware of the difference between curative and disease-modifying therapies. Otherwise, this may be a major source of misunderstandings as disease-modifying therapy may be indicated in the incurable stages of the disease as well. In these palliative situations, it is essential to identify the realistic aim(s) of the therapy: prolongation of life, alleviation of suffering or both.

Sedierung in der Palliativmedizin*: Leitlinie für den Einsatz sedierender Maßnahmen in der Palliativversorgung

The European Association for Palliative Care (EAPC) considers sedation to be an important and necessary therapy option in the care of selected palliative care patients with otherwise refractory distress. Prudent application of this approach requires due caution and good clinical practice. Inattention to potential risks and problematic practices can lead to harmful and unethical practice which may undermine the credibility and reputation of the responsible clinicians and institutions as well as the discipline of palliative medicine more generally. Procedural guidelines are helpful to educate medical providers, set standards for best practice, promote optimal care and convey the important message to staff, patients and families that palliative sedation is an accepted, ethical practice when used in appropriate situations. EAPC aims to facilitate the development of such guidelines by presenting a 10-point framework that is based on the pre-existing guidelines and literature and extensive peer review.ZusammenfassungDie European Association for Palliative Care (EAPC) betrachtet die palliative Sedierung als wichtige und notwendige Behandlungsoption für ausgewählte Patienten, die unter sonst therapierefraktären Symptomen leiden. Die Anwendung dieser Maßnahme erfordert entsprechende Sorgfalt als auch klinische Erfahrung („good clinical practice“). Eine Nichtbeachtung der potenziellen Risiken kann schädigendes und unethisches Handeln nach sich ziehen, welches die Glaubwürdigkeit und die Reputation der verantwortlichen Therapeuten und Institutionen als auch der Palliativmedizin insgesamt beeinträchtigen kann. Verfahrensorientierte Leitlinien tragen dazu bei, medizinisches Personal zu schulen, Standards für die optimale Versorgung zu setzen und die wichtige Information zu vermitteln, dass palliative Sedierung genau dann eine akzeptierte und ethisch gerechtfertigte Vorgehensweise darstellt, wenn sie in bestimmten angemessenen Situationen eingesetzt wird. Die EAPC ist bestrebt, die Entwicklung solcher Behandlungsstandards durch ein 10-Punkte-Rahmenprogramm im Sinne einer Leitlinie zu fördern, welches auf bereits bestehenden Standards, auf wissenschaftlichen Untersuchungen und auf Reviews beruht.AbstractThe European Association for Palliative Care (EAPC) considers sedation to be an important and necessary therapy option in the care of selected palliative care patients with otherwise refractory distress. Prudent application of this approach requires due caution and good clinical practice. Inattention to potential risks and problematic practices can lead to harmful and unethical practice which may undermine the credibility and reputation of the responsible clinicians and institutions as well as the discipline of palliative medicine more generally. Procedural guidelines are helpful to educate medical providers, set standards for best practice, promote optimal care and convey the important message to staff, patients and families that palliative sedation is an accepted, ethical practice when used in appropriate situations. EAPC aims to facilitate the development of such guidelines by presenting a 10-point framework that is based on the pre-existing guidelines and literature and extensive peer review.

Was ist das Problematische an der Palliativen Sedierung? – eine Übersicht

ZusammenfassungDie Palliative Sedierung als therapeutische Handlungsoption in anderweitig refraktären Behandlungssituationen wird in der Öffentlichkeit und in Fachkreisen in ihrer klinischen Wertigkeit grundsätzlich akzeptiert und weitgehend positiv konnotiert. Im Widerspruch dazu fallen sowohl die Quantität der empirischen Forschung als auch die Intensität der ethischen und klinischen Diskussion ins Auge, mit der konzeptuelle als auch durchführungsbezogene Aspekte der Palliativen Sedierung beschrieben und kontrovers erörtert werden. Anstatt eines distinkten Behandlungskonzeptes stellt sich hier eher ein komplexes Spektrum verschiedener (und ggf. ethisch verschieden zu bewertender) Vorgehensweisen dar. Die folgende Übersichtsarbeit fasst anhand der aktuellen Literatur zusammen, welche Aspekte im Kontext der Palliativen Sedierung als problematisch bewertet werden.AbstractDefinition of the problem Palliative sedation as a therapeutic option in otherwise refractory clinical situations has been broadly accepted and appreciated by general society and by health care professionals. Arguments However, intense empirical research activities have been undertaken and there is an ongoing controversial ethical and clinical debate on conceptual and procedural aspects of palliative sedation. Conclusion This review discusses the current literature and the aspects on palliative sedation that are considered problematic, and finds a complex spectrum of different modes of conduct (subject to moral reasoning and different moral judgments), rather than a distinct conceptual entity.

Spezialisierte Ambulante Palliativversorgung (SAPV)

ZusammenfassungDie „Spezialisierte Ambulante Palliativversorgung“ (SAPV) ist ein intensiviertes, multiprofessionelles (ambulantes) palliativmedizinisches Unterstützungsangebot für schwerkranke und sterbende Patienten in besonders komplexen Belastungssituationen. Im Jahr 2007 wurde der Anspruch eines jeden bedürftigen (gesetzlich versicherten) Patienten auf diese Leistung gesetzlich verankert. Trotz der Richtlinie des Gemeinsamen Bundesausschusses (G-BA) zur Ausgestaltung dieser spezialisierten Form palliativer Unterstützung stellt sich in Deutschland ein regional sehr divergierendes Bild darüber dar, wie die SAPV umgesetzt und gelebt wird. Der vorliegende Beitrag stellt die rechtlichen und konzeptuellen Rahmenbedingungen, finanzielle und klinische Aspekte sowie die Perspektiven für eine zukünftige, umfassende palliative Betreuung komplex belasteter Patienten dar.AbstractSpecialized palliative home care (“Spezialisierte Ambulante Palliativversorgung”, SAPV) denotes an intensified, multi-professional support system at home for patients suffering from complex symptoms and needs associated with severe and advanced illness. In 2007, a change in legislation guaranteed SAPV to any patient (covered by public health insurance) in need of specialized palliative care. Despite further specifications by federal institutions, SAPV has been transferred into German clinical practice in a very regionally diverse manner. This contribution describes the legislative and conceptual framework of SAPV, the financial and clinical aspects, and its future perspectives for the comprehensive palliative care of patients with complex demands.

Physicians’ and nurses’ expectations and objections toward a clinical ethics committee

The study aimed to explore the subjective need of healthcare professionals for ethics consultation, their experience with ethical conflicts, and expectations and objections toward a Clinical Ethics Committee. Staff at a university hospital took part in a survey (January to June 2010) using a questionnaire with open and closed questions. Descriptive data for physicians and nurses (response rate = 13.5%, n = 101) are presented. Physicians and nurses reported similar high frequencies of ethical conflicts but rated the relevance of ethical issues differently. Nurses stated ethical issues as less important to physicians than to themselves. Ethical conflicts were mostly discussed with staff from one’s own profession. Respondents predominantly expected the Clinical Ethics Committee to provide competent support. Mostly, nurses feared it might have no influence on clinical practice. Findings suggest that experiences of ethical conflicts might reflect interprofessional communication patterns. Expectations and objections against Clinical Ethics Committees were multifaceted, and should be overcome by providing sufficient information. The Clinical Ethics Committee needs to take different perspectives of professions into account.