The OUTREACH study: oncologists of German university hospitals in rotation on a palliative care unit-evaluation of attitude and competence in palliative care and hospice.

PURPOSE: The effect of the duration of an educational rotation presented at a palliative care unit on the palliative care knowledge gain and the increase of palliative care self-efficacy expectations are unclear. METHODS: This national prospective multicenter pre-post survey conducted at twelve German University Comprehensive Cancer Centers prospectively enrolled physicians who were assigned to training rotations in specialized palliative care units for three, six, or twelve months. Palliative care knowledge [in %] and palliative care self-efficacy expectations [max. 57 points] were evaluated before and after the rotation with a validated questionnaire. RESULTS: From March 2018 to October 2020, questionnaires of 43 physicians were analyzed. Physicians participated in a 3- (n = 3), 6- (n = 21), or 12-month (n = 19) palliative care rotation after a median of 8 (0-19) professional years. The training background of rotating physicians covered a diverse spectrum of specialties; most frequently represented were medical oncology (n = 15), and anesthesiology (n = 11). After the rotation, median palliative care knowledge increased from 81.1% to 86.5% (p < .001), and median palliative care self-efficacy expectations scores increased from 38 to 50 points (p < .001). The effect of the 12-month rotation was not significantly greater than that of the 6-month rotation. CONCLUSION: An educational rotation presented in a specialized palliative care unit for at least six months significantly improves palliative care knowledge and palliative care self-efficacy expectations of physicians from various medical backgrounds.

National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany - study protocol of a mixed-methods project.

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.

Factors influencing GPs' perception of specialised palliative homecare (SPHC) importance - results of a cross-sectional study.

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 (ß = - 0.283; CI 95% = - 0.384;-0.182), followed by the perceived quality of utilised SPHC (ß = 0.119; CI 95% = 0.048;0.190), involvement in treatment of palliative patients after SPHC initiation (ß = 0.088; CI 95% = 0.042;0.134), and conviction that palliative care should be a central part of GPs' work (ß = - 0.062; CI 95% = - 0.116;-0.008). Perceived SPHC-importance is also associated with SPHC-referrals (ß =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. TRIAL REGISTRATION: German Clinical Trials Register DRKS00014726 , 14.05.2018.

[Decision-making support in Intensive Care to facilitate organ donation : Position paper of the Ethics Section and the Organ Donation and Transplantation Section of the German Interdisciplinary Association of Critical Care and Emergency Medicine (DIVI) in collaboration with the Ethics Section of the German Society of Medical Intensive Care Medicine and Emergency Medicine (DGIIN)]. / Entscheidungshilfe bei erweitertem intensivmedizinischem Behandlungsbedarf auf dem Weg zur Organspende : Positionspapier der Sektion Ethik und der Sektion Organspende und -transplantation der Deutschen Interdisziplinären Vereinigung für Intensiv- und Notfallmedizin (DIVI) unter Mitarbeit der Sektion Ethik der Deutschen Gesellschaft für Internistische Intensivmedizin und Notfallmedizin (DGIIN).

BACKGROUND AND CHALLENGE: Injuries, especially traumatic brain injury, or specific illnesses and their respective sequelae can result in the demise of the patients afflicted despite all efforts of modern intensive care medicine. If in principle organ donation is an option after a patient's death, intensive therapeutic measures are regularly required in order to maintain the homeostasis of the organs. These measures, however, cannot benefit the patient afflicted anymore-which in turn might lead to an ethical conflict between dignified palliative care for him/her and expanded intensive treatment to facilitate organ donation for others, especially if the patient has opted for the limitation of life-sustaining therapies in an advance directive. METHOD: The Ethics Section and the Organ Donation and Transplantation Section of the German Interdisciplinary Association of Critical Care and Emergency Medicine (DIVI) have convened several meetings and a telephone conference and have arrived at a decision-making aid as to the extent of treatment for potential organ donors. This instrument focusses first on the assessment of five individual dimensions regarding organ donation, namely the certitude of a complete and irreversible loss of all brain function, the patient's wishes as to organ donation, his or her wishes as to limiting life-sustaining therapies, the intensity of expanded intensive treatment for organ protection and the odds of its successful attainment. Then, the combination of the individual assessments, as graphically shown in a {Netzdiagramm}, will allow for a judgement as to whether a continuation or possibly an expansion of intensive care measures is ethically justified, questionable or even inappropriate. RESULT: The aid described can help mitigate ethical conflicts as to the extent of intensive care treatment for moribund patients, when organ donation is a medically sound option. NOTE: Gerald Neitzke und Annette Rogge contributed equally to this paper and should be considered co-first authors.

[Amendment to the documentation of decisions to withhold or withdraw life-sustaining therapies in consideration of wish to donate organs : Recommendation of the Ethics Section and the Organ Donation and Transplantation Section of the German Interdisciplinary Association of Critical Care and Emergency Medicine (DIVI) in collaboration with the Ethics Section of the German Society of Medical Intensive Care Medicine and Emergency Medicine (DGIIN)]. / Ergänzung des Dokumentationsbogens "Therapiebegrenzung" unter Berücksichtigung eines möglichen Organspendewunsches : Empfehlung der Sektion Ethik sowie der Sektion Organspende und Organtransplantation der Deutschen Interdisziplinären Vereinigung für Intensiv- und Notfallmedizin (DIVI) unter Mitarbeit der Sektion Ethik der Deutschen Gesellschaft für Internistische Intensivmedizin und Notfallmedizin (DGIIN).

The Ethics Section of the German Interdisciplinary Association of Critical Care and Emergency Medicine (DIVI) recently published a documentation for decisions to withhold or withdraw life-sustaining therapies. The wish to donate organs was not considered explicitly. Therefore the Ethics Section and the Organ Donation and Transplantation Section of the DIVI together with the Ethics Section of the German Society of Medical Intensive Care Medicine and Emergency Medicine worked out a supplementary footnote for the documentation form to address the individual case of a patient's wish to donate organs.

[Anticancer therapy for symptom relief? : A systematic review of clinical trials in oncology]. / Symptomlinderung durch Tumortherapie? : Eine systematische Übersicht über onkologische Therapiestudien.

BACKGROUND: When patients suffer from incurable cancer, drug-based, systemic anticancer therapy is usually used with the aim of longer survival, while minimizing toxicity and ensuring a tolerable quality of life. It is unclear to what extent and with what degree of success systemic tumor therapy can be used to specifically improve pre-existing pain and an already compromised quality of life (QoL). METHODS: Therefore, a systematic review of oncological therapy studies (PubMed) was conducted. Only studies that identified the pain-relieving and QoL-enhancing effects of systemic anticancer therapy as the primary endpoint were selected and evaluated descriptively. RESULTS: Of the 2229 abstracts identified using a piloted search string, only 13 studies met the inclusion criteria. Of these, 10 studies showed an improvement in QoL-parameters through the use of systemic tumor therapies. DISCUSSION: Only a few studies focused primarily on the improvement of parameters related to quality of life-although this is the primary therapeutic goal for many patients suffering from incurable and advanced cancer. The study results encourage regular inclusion of symptom- and QoL-related data in clinical studies and to more explicitly address the potential of systemic anticancer therapy in relieving pain and other symptoms, thereby supporting the goals of palliative care.

Palliative home care for patients with advanced haematological malignancies-a multicenter survey.

Patients with advanced haematological malignancies in non-curative settings suffer from complex physical symptoms and psychosocial distress, comparable to patients with solid tumour entities. Nevertheless, numerous problems at the interface between haematology and palliative home care have been described. From January 2011 until October 2014, we performed a retrospective, multicenter analysis of all patients with haematological malignancies (ICD 10: C81-C95) being treated by the respective specialized palliative home care (SAPV) team. Three SAPV teams were surveyed. Disease entity, physical symptoms, psychosocial distress, number of hospital admissions, therapeutic interventions and other items were analysed descriptively. Of 3,955 SAPV patients, 1.8% (n = 73) suffered from haematological malignancies. Main problems were deterioration of general condition, pain or psychological problems. Thirty-seven percent developed new symptoms during SAPV, mainly pain, psychological distress or deterioration of general status. In 33%, patients were referred to hospital, mainly due to deterioration of general condition or pain. Seventy percent died within 3 months after beginning SAPV care; 83% died at home or in a nursing home. Patients suffering from advanced haematological malignancies were statistically underrepresented in SAPV, and SAPV was installed rather at the very last days of life. By far, more patients were able to die outside a hospital as compared to reference cohorts of haematological patients not being treated in SAPV. The spectrum of documented problems is comparable to other patient cohorts being treated in SAPV; therefore, the options and benefits of palliative home care should be incorporated in palliative haematological treatment concepts more vigorously and consequently.

[Role of anesthesiology in pain medicine and palliative care treatment in German hospitals : Survey of department heads of anesthesiology on treatment structures]. / Rolle der Anästhesiologie in der schmerzmedizinischen und palliativmedizinischen Versorgung in deutschen Krankenhäusern : Befragung von Chefärzten der Anästhesiologie zu Versorgungsstrukturen.

BACKGROUND: The aim of this analysis was to describe the role of anesthesiology departments in pain medicine and palliative care services in German hospitals. METHOD: In the year 2012, all heads of departments of anesthesiology registered with the German Society of Anesthesiology and Intensive Care Medicine were surveyed about structures of pain medicine and palliative care services in their hospitals using a standardized postal questionnaire. RESULTS: Out of 408 returned questionnaires (response rate 47%) 403 could be evaluated. Of the hospitals 58% had a designated pain medicine service, in 36 (9%) of the hospitals this was organized as an independent department and in 195 (57%) as part of another department, mostly the department of anesthesiology. The "pain clinic" as an outpatient service was the most common form of structure for pain medicine services (41%). Inpatient pain medicine units were available in 77 (19%) of the hospitals and a partial inpatient unit in the form of a day hospital in 26 (7%) of the hospitals. For the care of inpatients from other departments, there was an intrahospital pain consultation service in 166 of the hospitals, which was the only structure for pain medicine in 32 of the 231 hospitals that reported having a designated pain medicine service. In 160 pain medicine services anesthesiologists were the only medical practitioners and in a further 18 both anesthesiologists and other specialists were available (orthopedist/orthopedic surgeons n = 6, internal medicine n = 4, psychiatrist n = 2, general practitioner = 1 and neurologist n = 1). Only two hospitals had no anesthesiologist in the pain medicine team and for the remaining 51 hospitals no information was provided. In 189 of the 231 hospitals with pain medicine services, there was at least 1 physician with special qualifications in pain management. In 97 (44%) of the hospitals psychologists were part of the team with 53 having at least 1 psychologist with a special qualification in chronic pain management. Of the hospitals, 16% had a specialized department for palliative care, in 32% a specialized palliative care service was part of another department, which was the department of anesthesiology in 30%. Of the hospitals 56% had a palliative care consultation service, 41% had a specialized inpatient palliative care unit, 6% an outpatient clinic, 4% a day hospital and in 16% a specialized outpatient palliative care (SOPC) serving the community was incorporated. Inpatient consultation services and the SOPC were more common when the department of anesthesiology was involved in the palliative care services. CONCLUSION: In German hospitals, the departments of anesthesiology make a significant contribution to the provision of both pain medicine and palliative care services. Nevertheless, the respective structures of care are often incomplete or even lacking. There were shortcomings in terms of organization and qualification of the team in pain medicine services (e.g. no doctor with special qualifications in pain management or no psychologist). Palliative care services are more often organized as independent departments than as pain medicine services. Engagement of the anesthesiology department in palliative care is linked to a broader scope of the services provided, which might reflect the capacity of many anesthesiologists to work in an interdisciplinary manner and across interfaces.

[Characteristics of Patients with Breathlessness]. / Charakteristika von Palliativpatienten mit Atemnot.

Background Breathlessness is a common and distressing symptom in patients with advanced life-limiting disease. The aim of this study was to describe demographical and clinical characteristics of patients with breathlessness in Germany. Methods We conducted a secondary analysis of hospice and palliative care inpatient data from 2006 to 2008. The Hospice and Palliative Care Evaluation (HOPE) is an annual prospective German survey, that includes a validated 16-item symptom-and-problem checklist (severity score 0 - 3). Characteristics of patients with or without breathlessness were compared in a pure descriptive manner. Interpretation of given p-values takes the error inflation due to multiple testing into account. Results Breathlessness was recorded in 2860/5320 (53.8 %) patients (mean age 67.2 years (SD 12.4), 51.4 % female, 93.6 % malignant disease (female/male lung cancer 15.7/29.5 %, breast cancer 20.3/0.3 %, colon 10.3/8.7 %). Breathless patients compared with those without breathless ness had a significantly worse functional status (ECOG 3 - 4: 78.4 % vs. 70.8 %, p < 0.001), suffered from a larger number (11.1 vs. 9.5, p < 0.001) of symptoms and the symptoms were of higher intensity (except confusion). Breathless patients had a higher risk to die during inpatient stay (43.5 % vs. 32.4 %, p < 0.001). Conclusion Based on this large sample of hospice and palliative care inpatients, breathlessness is associated with a high symptom burden and shortened survival. Breathless patients need more attention in health care.

[Characteristics of patients with breathlessness - results of the german hospice and palliative care evaluation]. / Charakteristika von Palliativpatienten mit Atemnot.

BACKGROUND: Breathlessness is a common and distressing symptom in patients with advanced life-limiting disease. The aim of this study was to describe demographical and clinical characteristics of patients with breathlessness in Germany. METHODS: We conducted a secondary analysis of hospice and palliative care inpatient data from 2006 to 2008. The Hospice and Palliative Care Evaluation (HOPE) is an annual prospective German survey, that includes a validated 16-item symptom-and-problem checklist (severity score 0-3). Characteristics of patients with or without breathlessness were compared in a pure descriptive manner. Interpretation of given p-values takes the error inflation due to multiple testing into account. RESULTS: Breathlessness was recorded in 2860/5320 (53.8 %) patients (mean age 67.2 years (SD 12.4), 51.4 % female, 93.6 % malignant disease (female / male lung cancer 15.7/29.5 %, breast cancer 20.3/0.3 %, colon 10.3/8.7 %)). Breathless patients compared with those without breathless ness had a significantly worse functional status (ECOG 3-4: 78.4 % vs. 70.8 %, p < 0.001), suffered from a larger number (11.1 vs. 9.5, p < 0.001) of symptoms and the symptoms were of higher intensity (except confusion). Breathless patients had a higher risk to die during inpatient stay (43.5 % vs. 32.4 %, p < 0.001). CONCLUSION: Based on this large sample of hospice and palliative care inpatients, breathlessness is associated with a high symptom burden and shortened survival. Breathless patients need more attention in health care.

Desire for hastened death: how do professionals in specialized palliative care react?

OBJECTIVE: Desires for hastened death (DHD; wish to hasten death is also in use) are prevalent in terminally ill patients. Studies show that health professionals (HP) are often underprepared when presented with DHD. HPs in specialized palliative care (SPC-HP) often encounter DHD. This study aimed to identify SPC-HP responses to DHD in daily practice and their corresponding functions. METHODS: Narrative interviews were conducted with 19 SPC-HPs at four German University Hospitals. Transcripts were analyzed using the documentary method. An inventory of established responses to DHD was compiled, and their corresponding functions in the context of the patient-SPC-HP interaction were reconstructed. RESULTS: Twelve response categories and six corresponding functions were identified. On the patient level, responses categorized as symptom control, exploring the reasons and generating perspective, reorientation, and hope were particularly used to ease the patient's burden. On the interaction level, creating a relationship was fundamental. On the SPC-HP level, various methods served the functions self-protection and showed professional expertise. CONCLUSIONS: Profound personal and professional development is necessary to respond to the inherent challenges presented by DHD. Establishing helpful relationships with patients is essential regardless of SPC-HP specialization. SPC-HPs should maximize their skills in establishing and maintaining relationships as well as strengthening their own resilience, possibly in specific training courses.

[Knowledge and attitude of medical students in Germany towards palliative care : Does the final year of medical school make a difference?]. / Wissen und Selbsteinschätzung in Bezug auf palliativmedizinische Fragestellungen bei Medizinstudierenden : Macht das praktische Jahr einen Unterschied?

BACKGROUND: The practical year (PY) during the final year of medical education is intended to deepen and broaden knowledge, skills, and abilities that were acquired during previous years of their studies. Against this background, this study pursues the question of how the knowledge of future physicians and their confidence in terms of cancer pain therapy and other palliative care issues develops during the PY. MATERIALS AND METHODS: At the end of the PY, students from two university hospitals completed a 3-part online questionnaire (self-assessment of the confidence, questions about palliative care knowledge, and assessment of palliative care training during the PY). These results are compared with previously published data from the same collective that had been collected at the beginning of the PY. RESULTS: Overall, 92 of 318 students participated (28.9 %). Less than 10 % of students said that they were more confident regarding palliative care topics at the end of their medical studies. Improvements in the self-assessment could only be observed in the recognition of and screening for cancer pain (increase from 36 % to 65%). With regard to the palliative care knowledge, only the knowledge of how to treat symptoms other than pain improved significantly; however, knowledge in this regard prior to the PY was particularly low (an increase from 25 % to 35 %, p < 0.05). In the only multiple-choice question about ethics, the correct answer rose slightly from 51 % (before) to 55 % (after the PY). Of participating students, 21% (prior to the PY 27 %) stated that not providing fluids to dying patients is a form of euthanasia. In terms of palliative care training, between 36 and 83 % of participants stated having insufficient opportunities to gain knowledge and experience on various topics in the treatment of patients with advanced and incurable diseases during their PY. CONCLUSION: In the present study, considerable deficits in confidence and knowledge regarding palliative care issues were also observed at the end of PY. Integration of palliative care into the medical school curriculums should be given special attention in terms of a longitudinal training of the PY.

[Specialized palliative home care: An interprofessional network]. / Spezialisierte Ambulante Palliativversorgung (SAPV) : Vernetzung von Sektoren, Disziplinen und Professionen.

Specialized 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.

'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.

[Pain therapy in oncology: results of a nationwide survey]. / Schmerztherapie in der Onkologie : Ergebnisse einer bundesweiten Umfrage.

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.