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Background: The COVID pandemic is an example of a crisis challenging healthcare systems worldwide. The impact of the pandemic on providing high-quality palliative care calls for a deeper understanding of specialist services during crises. This is essential in preparation for further crises., Aim: To develop a conceptual understanding of the impact of the pandemic on specialist palliative care as an example for arising future crises., Design: Qualitative interview study across Germany, following a constructivist grounded theory methodology., Setting/participants: Eleven semi-structured interviews with experts with overarching knowledge of structures and processes in specialist palliative care between 05-07/2020 and between 02-06/2021, 23 semi-structured interviews with healthcare professionals working in a specialist palliative care setting., Results: The complex system of palliative care provision during crises has properties that cannot be understood as separated parts of the care process. The pandemic led to unique structural and processual challenges characterized by interconnectedness, uncertainty, dynamic, underlying dilemmas, and unclear long-term goal. In response to the pandemic, teams experienced different phases, which enhanced adaption, innovation, and progress within complex care situations. Creative strategy approaches and dynamic responsiveness facilitated innovative development and could lead to long-lasting improvement within services. Availability of information, transparent communication, comprehensible instructions, participation in decision-making, and search for solutions contributed to teams' proactive development throughout the pandemic., Conclusion: Addressing the complex problems in specialist palliative care caused by crises requires system thinking and a learning mindset. This can facilitate teams to overcome the crisis and move forward rather than bounce back to normal., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Standardised use of patient-centred outcome measures (PCOMs) improves aspects of quality of care. Normalization Process Theory (NPT) considers the social (inter-)actions of implementation processes operationalised through four constructs: coherence-building, cognitive participation, collective action and reflexive monitoring. The aim of the study was to identify barriers and enablers for the successful use of PCOMs in specialist palliative home care (SPHC) using NPT, to collect clinically meaningful and reliable data to improve patient outcomes., Methods: Qualitative study using semi-structured interviews with palliative care professionals from German SPHC teams who participated in a study using PCOMs. Data were analysed using Framework analysis, and contextualised within NPT., Results: Seventeen interviews across five teams were conducted. Some teams already had an understanding of what PCOMs are and how to use them, based on previous experience. In other teams, this understanding developed through the perception of the benefits (coherence). Participation and engagement depended on individuals and was decisive for coherence-building. The attitude of the management level also played a major role (cognitive participation). Integration of PCOMs into everyday clinical practice varied and depended on the manifestation of the first two constructs and other already established routines (collective action). In the context of appraisal, both positive (e.g. focus on patient) and negative aspects (e.g. additional work) of using PCOMs were mentioned (reflexive monitoring)., Conclusions: Although benefits of using PCOMs were partly recognised, not all teams continued standardised use. Here, not only the social (inter-)actions, but also the influence of the context (working environment) were decisive. Future implementation strategies should consider integrating PCOMs in existing electronic patient records, education sessions supporting coherence-building, internal facilitators/local champions, and ensuring frequent data analyses as it is beneficial and increases the readiness of using PCOMs., (© 2023. The Author(s).)

Background: Specialist palliative home care (SPHC) aims to maintain and improve patients' quality of life in the community setting. Symptom burden may differ between oncological and non-oncological patients. However, little is known about diagnosis-related differences of SPHC patients. This study aims to describe the prevalence of physical symptom burden and psychosocial problems of adult patients in SPHC, and to evaluate diagnosis-related symptom clusters., Methods: Secondary analysis of data from a prospective, cross-sectional, multi-centre study on complexity of patients, registered at the German Register for Clinical Studies (DRKS trial registration number: DRKS00020517, 12/10/2020). Descriptive statistics on physical symptom burden and psychosocial problems at the beginning of care episodes. Exploratory and confirmatory factor analyses to identify symptom and problem clusters., Results: Seven hundred seventy-eight episodes from nine SPHC teams were included, average age was 75 years, mean duration of episode 18.6 days (SD 19.4). 212/778 (27.2%) had a non-oncological diagnosis. Main burden in non-oncological episodes was due to poor mobility (194/211; 91.9%) with significant diagnosis-related differences (χ² = 8.145, df = 1, p = .004; oncological: 472/562; 84.0%), and due to weakness (522/565; 92.4%) in oncological episodes. Two symptom clusters (psychosocial and physical) for non-oncological and three clusters (psychosocial, physical and communicational/practical) for oncological groups were identified. More patients in the non-oncological group compared to the oncological group showed at least one symptom cluster (83/212; 39.2% vs. 172/566; 30.4%)., Conclusion: Patients with non-oncological diseases had shorter episode durations and were more affected by symptom clusters, whereas patients with oncological diseases showed an additional communicational/practical cluster. Our findings indicate the high relevance of care planning as an important part of SPHC to facilitate anticipatory symptom control in both groups., (© 2023. The Author(s).)

Background : Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective : To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons learned, PCOMs used, models of implementation, implementation outcomes, costs, and consequences of implementing PCOMs in palliative care clinical practice. Methods : We will search MEDLINE, PsycINFO, CINAHL, Embase, Emcare, SCI-Expanded, SSCI, ESCI, and BNI. The database search will be supplemented by a list of studies from the expert advisory committee, hand-searching of reference lists for included articles, and citations of the original review. We will include primary studies using a PCOM during clinical care of adult patients with advanced disease in palliative care settings and extract data on reported models of implementation, PCOMs, facilitators, barriers, lessons learned, costs, and implementation outcomes. Gough's Weight of Evidence Framework will be used to assess the robustness and relevance of the studies. We will narratively synthesise and tabulate the findings. This review will follow PRISMA, PRISMA-Abstract, PRISMA-P, and PRISMA-Search as the reporting guidelines. Source of funding : Marie Curie. The funder is not involved in designing or conducting this study. Protocol registration : CRD42023398653 (13/02/2023)., Competing Interests: No competing interests were disclosed., (Copyright: © 2023 Antunes B et al.)

Background: The use of sedative drugs and intentional sedation in end-of-life care is associated with clinical, ethical and legal challenges. In view of these and of the issue's great importance to patients undergoing intolerable suffering, we conducted a project titled SedPall ("From anxiolysis to deep continuous sedation - Development of recommendations for sedation in palliative care") with the purpose of developing best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care and obtaining feedback and approval from experts in this area., Design: Our stepwise approach entailed drafting the recommendations, obtaining expert feedback, conducting a single-round Delphi study, and convening a consensus conference. As an interdisciplinary group, we created a set of best practice recommendations based on previously published guidance and empirical and normative analysis, and drawing on feedback from experts, including patient representatives and of public involvement participants. We set the required agreement rate for approval at the single-round Delphi and the consensus conference at ≥80%., Results: Ten experts commented on the recommendations' first draft. The Delphi panel comprised 50 experts and patient and public involvement participants, while 46 participants attended the consensus conference. In total, the participants in these stages of the process approved 66 recommendations, covering the topics "indications", "intent/purpose [of sedation]", "decision-making", "information and consent", "medication and type of sedation", "monitoring", "management of fluids and nutrition", "continuing other measures", "support for relatives", and "team support". The recommendations include suggestions on terminology and comments on legal issues., Conclusion: Further research will be required for evaluating the feasibility of the recommendations' implementation and their effectiveness. The recommendations and the suggested terminology may serve as a resource for healthcare professionals in Germany on the use of sedative drugs and intentional sedation in specialist palliative care and may contribute to discussion on the topic at an international level., Trial Registration: DRKS00015047 (German Clinical Trials Register)., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: The need for palliative care will increase over the next years because of the rise in deaths from chronic illness and demographic changes. The provision of specialist palliative care (SPC) in Germany (palliative care units (PCU), specialist palliative home care (SPHC) teams and palliative care advisory (PCA) teams) has been expanded in recent years. Despite the increasing availability, there is still insufficient coverage with long travel times. The aim was to describe the spatial distribution of SPC services in Germany, to calculate the potential accessibility of facilities and to assess potential spatial under-provision., Methods: Retrospective cross-sectional study with regional analysis of SPC services in Germany. Addresses of SPC services registered online were geocoded, accessibility and network analyses were conducted, and proportion of the population living up to 60 minutes driving time were calculated., Results: A total of 673 facilities were included. Their distribution is heterogeneous with every fourth of the 401 districts (110/401; 27.4%) lacking a SPC service. In half of the area of Germany the existing PCU and SPHC teams are within reach of 30 minutes, with nearly 90% of the population living there. Hospitals providing PCA teams can be reached within 30 minutes in 17% of the total area with provision for 43% of the population., Conclusions: A high coverage of SPHC teams and PCU indicates a good spatial distribution in Germany but no complete adequate provision of SPC services, especially for PCA teams. There is a persistent need for further implementation of hospital PCA teams., (© 2023. The Author(s).)

Background: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care., Aim: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS)., Design: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min)., Setting/participants: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance., Results: Fifty patients were randomised to complete paper-electronic ( n  = 24) and electronic-paper ( n  = 26) IPOS with median age 69 years (range 24-95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98-1.00), lowest ICCs being observed for symptoms 'Appetite loss' and 'Drowsiness' (ICC 0.95, 95% CI 0.92-0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for 'Communication' ( F mode  = 5.9, p  = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions., Conclusion: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population.

A specialized drug information service can assist professionals in collating relevant information and hereby help to increase medication safety. It is only helpful if the information provided can also be put into practice, though. The aim of this study was to evaluate the benefits of a specialized palliative care drug information service AMInfoPall and its users' experience. A web-based survey among health care professionals subsequent to inquiry between 07/2017 and 06/2018 was conducted. Twenty questions related to the use and transfer of received information into clinical practice and the result of the consecutive treatment. Invitations to participate/ reminders were sent out 8 and 11 days after receiving the requested information. The survey's response rate was 119/176 (68%). Most participants were physicians (54%), followed by pharmacists (34%) and nurses (10%), 33/119 (28%) worked in palliative home care teams, 29 (24%) on palliative care units, and 27 (23%) in retail pharmacies. 86/99 respondents had conducted an unsatisfiable literature search before contacting AMInfoPall. 113/119 (95%) were satisfied with the provided answer. Information was transferred into clinical practice as recommended in 65/119 (55%) cases and led to a change in patient status in 33%, mostly improvement. No change was reported in 31% and in 36% it was unclear. AMInfoPall was well accepted and mostly used by physicians and palliative home care services. It provided helpful support for decision-making. The obtained information was mostly well transferable into practice.

Background: The COVID-19 pandemic impacts on working routines and workload of palliative care (PC) teams but information is lacking how resource use and associated hospital costs for PC changed at patient-level during the pandemic. We aim to describe differences in patient characteristics, care processes and resource use in specialist PC (PC unit and PC advisory team) in a university hospital before and during the first pandemic year., Methods: Retrospective, cross-sectional study using routine data of all patients cared for in a PC unit and a PC advisory team during 10-12/2019 and 10-12/2020. Data included patient characteristics (age, sex, cancer/non-cancer, symptom/problem burden using Integrated Palliative Care Outcome Scale (IPOS)), information on care episode, and labour time calculated in care minutes. Cost calculation with combined top-down bottom-up approach with hospital's cost data from 2019. Descriptive statistics and comparisons between groups using parametric and non-parametric tests., Results: Inclusion of 55/76 patient episodes in 2019/2020 from the PC unit and 135/120 episodes from the PC advisory team, respectively. IPOS scores were lower in 2020 (PCU: 2.0 points; PC advisory team: 3.0 points). The number of completed assessments differed considerably between years (PCU: episode beginning 30.9%/54.0% in 2019/2020; PC advisory team: 47.4%/40.0%). Care episodes were by one day shorter in 2020 in the PC advisory team. Only slight non-significant differences were observed regarding total minutes/day and patient (PCU: 150.0/141.1 min., PC advisory team: 54.2/66.9 min.). Staff minutes showed a significant decrease in minutes spent in direct contact with relatives (PCU: 13.9/7.3 min/day in 2019/2020, PC advisory team: 5.0/3.5 min/day). Costs per patient/day decreased significantly in 2020 compared to 2019 on the PCU (1075 Euro/944 Euro for 2019/2020) and increased significantly for the PC advisory team (161 Euro/200 Euro for 2019/2020). Overhead costs accounted for more than two thirds of total costs. Direct patient cost differed only slightly (PCU: 134.7 Euro/131.1 Euro in 2019/2020, PC advisory team: 54.4 Euro/57.3 Euro)., Conclusions: The pandemic partially impacted on daily work routines, especially on time spent with relatives and palliative care problem assessments. Care processes and quality of care might vary and have different outcomes during a crisis such as the COVID-19 pandemic. Direct costs per patient/day were comparable, regardless of the pandemic., (© 2023. The Author(s).)

Background: Patient-reported outcome measures have the potential to improve outcomes, quality, and effectiveness of care. Digital use of patient-reported outcome measures could be an option to foster implementation in palliative care. The Palli-MONITOR study focused on developing and testing an electronic patient-reported outcome measure in specialised palliative home care. As part of this study, we examined setting-specific challenges for the development of the measure., Aim: We aimed to identify and explore challenges for the development of electronic patient-reported outcome measures as standardised assessment in specialised palliative home care., Design: Qualitative approach with semi-structured interviews and focus groups. Data were thematically analysed using the framework method., Setting/participants: Patients and professionals from five German palliative home care teams., Results: Patients described potential problems in using electronic questionnaires due to their deteriorating health. Answering the electronic questionnaire encouraged patients to reflect on their current palliative situation, which was partly perceived as burdensome. Identified concerns and questions regarding the future roll-out of electronic patient-reported outcome measurement addressed the process of receiving and using the provided information in clinical care routine. Challenging factors on organisational and structural level were the potential undermining of the established 24-h emergency call system and the potential use for patients., Conclusions: Our results provide a multifaceted picture of challenges developing electronic systems for patient-reported outcome measurement in palliative home care on the individual and organisational level. The study underpins the benefit of stakeholder involvement creating digital health innovations and emphasises the importance to therefore mind setting specific culture.

Objective: Off-label drug use seems to be integral to adult palliative care pharmacotherapy. Balancing potential risks and benefits in the context of limited therapeutic options is challenging. To provide specific support for clinicians in dealing with off-label use, it is essential to understand off-label use in everyday clinical practice. The aim of this pilot study was to quantify and describe off-label use in an adult palliative care unit., Methods: Retrospective chart review of all adult patients treated on a palliative care unit in October 2017. All data on drug use (eg, indication, dose, route of administration) were extracted and matched with the prescribing information. Identified off-label use was subsequently compared with recommendations in the relevant literature. The main outcome measure was frequency and type of off-label drug use., Results: Some 2352 drug application days and 93 drugs were identified for 28 patients. Of all drugs, 47 (51%) were used off-label at least once. Most off-label uses concerned indication (57%) followed by mode of administration. In drugs highly relevant to palliative care the rate of off-label use was as high as 67%. The extent to which off-label therapy was supported by literature was very variable and ranged from 0% to 88%., Conclusions: These data from a single unit confirm the high prevalence of off-label use in palliative medicine and demonstrate that off-label use in adult palliative care is multifaceted. The data presented allow for a more precise characterisation of various aspects of off-label use in order to derive concrete further measures for research and clinical practice., Competing Interests: Competing interests: None declared., (© European Association of Hospital Pharmacists 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: In the research network of German university palliative care centers (PallPan), as part of Network University Medicine (NUM), recommendations for action were developed in regard to the care provided for seriously ill and dying patients during a pandemic. For this purpose, the experiences and needs of hospital staff working closely with patients outside of specialized palliative care units during the first wave of the COVID-19 pandemic were also examined., Materials and Methods: Nationwide online survey of 8,882 physicians, nurses and therapists working in acute inpatient care in the period from December 2020 to January 2021 by means of a newly developed and piloted questionnaire on changes, burdens and cooperation with specialized palliative care. Grouping based on the changes in the number of seriously ill and dying people in the first wave of the pandemic. Due to the exploratory character of the survey, the data were analyzed descriptively., Results: 505/8882 completed questionnaires were evaluated (5.7 %). 167/505 (33.1 %) of the respondents reported a lower quality of care for the critically ill and dying. 464/505 (91.8 %) reported exemptions in place for visiting the dying. The most frequently mentioned stress factor was the perceived loneliness of the seriously ill and dying 437/505 (86.5 %), followed by stricter hygiene rules 409/505 (81 %), increased workload 372/505 (73.3 %) and perceived psychological stress on relatives and survivors 395/505 (78.2 %). 141/505 (27.9 %) of respondents used Tablet PCs to support patient-family communication. 310/505 (61.4 %) involved palliative care professionals in patient care, and 356/505 (70.5 %) of respondents found other palliative care services helpful., Conclusion: Experiences and suggestions for improving palliative care in pandemic times are integrated into the PallPan recommendations for action. Family visits should be allowed and supplemented by digital offers. Palliative Care should also be integrated into both pandemic and contingency plans., Competing Interests: Die Autorinnen/Autoren geben an, dass kein Interessenkonflikt besteht., (The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commecial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/).)

Objectives: Continuous infusions of sedatives and/or opioids (continuous infusions) are frequently used in end-of-life care. Available data indicate challenges in nonspecialist palliative care settings. We aimed to assess the use of continuous infusions during the last week of life in different hospital departments., Methods: In a sequential mixed-methods design, a retrospective cohort study was followed by consecutive qualitative interviews in 5 German hospital departments. Medical records of 517 patients who died from January 2015 to December 2017 were used, and 25 interviews with physicians and nurses were conducted. Recorded sedatives were those recommended in guidelines for "palliative sedation": benzodiazepines, levomepromazine, haloperidol (≥5 mg/d), and propofol. Exploratory statistical analysis (R 3.6.1.) and framework analysis of interviews (MAXQDA 2018.2) were performed., Results: During the last week of life, 359 of 517 deceased patients (69%) received continuous infusions. Some interviewees reported that continuous infusions are a kind of standard procedure for "palliative" patients. According to our interviewees' views, equating palliative care with continuous infusion therapy, insufficient experience regarding symptom control, and fewer care needs may contribute to this approach. In addition, interviewees reported that continuous infusions may be seen as an "overall-concept" for multiple symptoms. Medical record review demonstrated lack of a documented indication for 80 of 359 patients (22%). Some nurses experienced concerns or hesitations among physicians regarding the prescription of continuous infusions., Conclusions: Continuous infusions seem to be common practice. Lack of documented indications and concerns regarding the handling and perception of a "standard procedure" in these highly individual care situations emphasize the need for further exploration and support to ensure high quality of care., Competing Interests: The authors disclose no conflict of interest., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc.)

Background: The SARS-CoV-2 pandemic has presented major challenges to the health system. Despite high acute case numbers, patients without Covid-19 still need to be cared for. Due to the severity of the disease and a possible stressful overall situation, patients with palliative care needs also require comprehensive care during pandemic times. In addition to specialized palliative care facilities, this also takes place in non palliative care wards. In order to ensure this general palliative care also in pandemic times, the experience of the staff should be used. The aim of this paper is to examine challenges and possible solutions for general palliative care inpatients in relation to the care of seriously ill and dying patients and their relatives., Methods: Qualitative semi-structured focus groups were conducted online for the study. Participants were staff from intensive care or isolation wards or from units where vulnerable patients (e.g. with cognitive impairment) are cared for. The focus groups were recorded and subsequently transcribed. The data material was analysed with the content structuring content analysis according to Kuckartz., Results: Five focus groups with four to eight health care professionals with various backgrounds were conducted. Fifteen main categories with two to eight subcategories were identified. Based on frequency and the importance expressed by the focus groups, six categories were extracted as central aspects: visiting regulations, communication with relatives, hygiene measures, cooperation, determination of the patients will and the possibility to say good bye., Conclusion: The pandemic situation produced several challenges needing specific solutions in order to manage the care of seriously ill and dying patients. Especially visiting needs regulation to prevent social isolation and dying alone. Finding alternative communication ways as well as interprofessional and interdisciplinary cooperation is a precondition for individualised care of seriously ill and dying patients and their relatives. Measures preventing infections should be transparently communicated in hospitals., (© 2022. The Author(s).)

Background: A casemix classification based on patients' needs can serve to better describe the patient group in palliative care and thus help to develop adequate future care structures and enable national benchmarking and quality control. However, in Germany, there is no such an evidence-based system to differentiate the complexity of patients' needs in palliative care. Therefore, the study aims to develop a patient-oriented, nationally applicable complexity and casemix classification for adult palliative care patients in Germany., Methods: COMPANION is a mixed-methods study with data derived from three subprojects. Subproject 1: Prospective, cross-sectional multi-centre study collecting data on patients' needs which reflect the complexity of the respective patient situation, as well as data on resources that are required to meet these needs in specialist palliative care units, palliative care advisory teams, and specialist palliative home care. Subproject 2: Qualitative study including the development of a literature-based preliminary list of characteristics, expert interviews, and a focus group to develop a taxonomy for specialist palliative care models. Subproject 3: Multi-centre costing study based on resource data from subproject 1 and data of study centres. Data and results from the three subprojects will inform each other and form the basis for the development of the casemix classification. Ultimately, the casemix classification will be developed by applying Classification and Regression Tree (CART) analyses using patient and complexity data from subproject 1 and patient-related cost data from subproject 3., Discussion: This is the first multi-centre costing study that integrates the structure and process characteristics of different palliative care settings in Germany with individual patient care. The mixed methods design and variety of included data allow for the development of a casemix classification that reflect on the complexity of the research subject. The consecutive inclusion of all patients cared for in participating study centres within the time of data collection allows for a comprehensive description of palliative care patients and their needs. A limiting factor is that data will be collected at least partly during the COVID-19 pandemic and potential impact of the pandemic on health care and the research topic cannot be excluded., Trial Registration: German Register for Clinical Studies trial registration number: DRKS00020517 ., (© 2022. The Author(s).)

Symptom Control at the End of Life Abstract. Patients with advanced disease suffer from multiple physical and psychological symptoms. These include pain, weakness, lack of energy, weight loss, breathlessness, nausea and vomiting, constipation, and depression. In the dying phase, death rattle, delirium and terminal agitation may be additional problems. Palliative care focusses on alleviating these symptoms, taking into account the physical, psychological, social and spiritual dimension. Main principles of symptom control in palliative care are 1) considering differential diagnoses of the causes of the symptom to be able to treat potentially reversible causes, 2) using preventive measures and 3) symptomatic treatment - on its own or in combination with causal therapy. The following should be noted regarding pharmacological treatment: In case of permanent symptoms, the drugs have to be given at fixed times, in accordance with their duration of action, to achieve a constant blood level. In addition to this regular drug administration, prn medication should be prescribed, e. g., for pain, breathlessness, and nausea. If oral administration is not possible, drugs can be administered intravenously, subcutaneously or transdermally via patches. Non-pharmacological measures can be used additionally or primarily for symptom control. This paper presents important aspects of symptom control for pain, breathlessness, nausea and vomiting, constipation, and depression as well as for symptoms in the dying phase. It concludes by adding a few words on sedation in palliative care as a measure of last resort.

Pharmacotherapy is essential in palliative medicine. Besides potential benefits, pharmacotherapy also poses potential risks that need to be minimized for patient safety. Pharmacists can play an important role in identifying, solving, and avoiding drug-related problems (DRPs). The aim of this study was to evaluate pharmaceutical interventions on safety of drug therapy in patients in an inpatient palliative care unit. All patients admitted to a palliative care unit over a 12-month period were screened for eligibility (ie, life expectancy >4 weeks). To identify and assess DRPs, patients' pharmacotherapy was evaluated by a pharmacist according to various aspects (eg, drug selection, dose selection, or treatment duration according to the Pharmaceutical Care Network Europe classification for DRPs). During the 12-month period, 41 patients were included. Patients received a median of 11 (range, 1-22) different drugs. Overall, 207 DRPs were documented (median 5 DRPs/patient). After recording a DRP, the pharmacist directly intervened 290 times in order to solve the DRP, which was successful in 181/207 (88%). Clinically relevant DRPs are common in palliative medicine. The systematic assessment can support therapy decisions. This can result in optimized drug therapy, subsequently having a positive effect on symptom control and quality of life.

Context: Drug therapy is an integral part of palliative care but pharmacotherapy can be challenging for health care professionals. Access to information is essential for health care providers to choose the best drug treatment for an individual patient. A drug information service can support health care professionals to obtain appropriate, unbiased information., Objectives: To describe the enquiries to a palliative care drug information service. Objectives are to determine the information needs (including off-label use) of different professional groups and areas of care, to identify subject areas and drug substances for which there is a high need for information., Methods: Retrospective evaluation of all enquiries to a palliative care drug information service within 24 months from July 2017 to June 2019., Results: During the study period, 477 enquiries reached the drug information service, mostly from physicians (59%), followed by pharmacists (31%). Ketamin was the most discussed drug (11%), in general enquiries or corresponding replies mostly contained drugs targeting the nervous system, such as analgesics. Application techniques (26%) was the most relevant category, cancer pain (24%) was the most frequently addressed symptom. About half of the enquiries (48%) dealt with off-label us, regarding an application mode outside the license., Conclusion: The information needs on palliative care pharmacotherapy seem to be particularly high among physicians. The demand for information in the area of application technology is particularly apparent and demonstrates a therapeutic gap in terms of availability of suitable preparations as well as necessary information., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Palliative care phases (stable, unstable, deteriorating, terminal and bereavement) are routinely used in Australia and the UK to describe the clinical situation of patients and their families and to evaluate the associated care plan. In addition, it serves as a benchmark developed by the Australian Palliative Care Outcome Collaboration (PCOC) and is used nationwide for comparisons between services. In Germany, the concept is not used consistently due to various translations. Furthermore, there is no nationwide systematic approach to routinely assess clinical outcomes in palliative care. The study aims to develop a German version of the palliative care phase definitions by adapting them culturally, and to examine the inter-rater reliability of the adjusted definitions with healthcare professionals., Methods: Mixed-methods approach: Cognitive interview study using 'think aloud' and verbal probing techniques and a consecutive multi-center cross-sectional study with two clinicians independently assigning the phase definitions. Interviewees/participants were selected through convenience and purposive sampling in specialist palliative care inpatient units, advisory and community services and in three specialist palliative care units with doctors, nursing staff and allied health professionals., Results: Fifteen interviews were conducted. Identified difficulties were: Some translated terms were 1) not self-explanatory (e.g. 'family/carer' or 'care plan') and (2) too limited to the medical dimension neglecting the holistic approach of palliative care. (3) Problems of comprehension regarding the concept in general occurred, e.g. in differentiating between the 'unstable' and 'deteriorating' phase. Inter-rater reliability was moderate (kappa = 0.44; 95% CI = 0.39-0.52). The assignment of the phase 'deteriorating' has caused the most difficulties., Conclusion: Overall, the adapted palliative care phases are suitable to use in the German specialist palliative care setting. However, the concept of the phases is not self-explanatory. To implement it nationwide for outcome measurement/benchmarking, it requires further education, on-the-job training and experience as well as the involvement of healthcare professionals in implementation process. For the use of international concepts in different healthcare systems, a deeper discussion and cultural adaptation is necessary besides the formal translation., (© 2021. The Author(s).)

Sedation in palliative care, also called "palliative sedation", is an important treatment option for patients who experience unbearable suffering from treatment-refractory symptoms at the end of life. The aim is to reduce this suffering as far as possible by reduction of the patient's consciousness. Good communication between all people involved is crucial for these clinically and ethically challenging situations. This article presents definitions of key terms and of different types of sedation. It then describes the process of sedation step by step: 0. Pre-emptive discussion of the option of sedation (in the context of advance care planning); 1. indication and decision making; 2. information and informed consent; 3. documentation when starting sedation; 4. start of sedation; 5. monitoring and adaption of sedation; 6. medical and nursing care and documentation during sedation; 7. care and processes after the death of the patient (if applicable)., Competing Interests: Die Autorinnen/Autoren geben an, dass kein Interessenkonflikt besteht., (Thieme. All rights reserved.)

Introduction: Over the last decades, patient-reported outcome (PRO) measures have been developed to better understand the patient's perspective and enable patient-centred care. In palliative care, the Integrated Palliative care Outcome Scale (IPOS) is recommended as a PRO tool. Its implementation in specialised palliative home care (SPHC) would benefit from an electronic version validated for the setting.Following the Medical Research Council (MRC) guidance, the study Palli-MONITOR is developing (phase 1) and testing the feasibility (phase 2) of implementing the electronic version of IPOS (eIPOS) in the SPHC setting to inform a cluster-randomised phase 3 trial., Methods and Analysis: Palli-MONITOR is a multicentre, sequential mixed-methods, two-phase development and feasibility study. The study consists of four substudies. In phase 1 (MRC development phase), qualitative patient interviews and focus groups with SPHC professionals are used to identify barriers and facilitators of eIPOS (substudy I). Substudy II tests the equivalence of eIPOS and IPOS in a crossover randomised controlled trial. Phase 2 (MRC feasibility/piloting phase) includes a quasi-experimental study with two control groups (substudy III), and qualitative interviews as well as focus groups to explore the feasibility and acceptability of the developed intervention (substudy IV).Qualitative data will be analysed with thematic analysis following the framework approach. Quantitative analysis uses a two-way intraclass correlation coefficients model for the equivalence testing. Quantitative analysis of the quasi-experimental study will focus on the primary outcomes, recruitment rates and completeness of eIPOS. Secondary outcomes will include intraindividual change in palliative symptoms and concerns, quality of life and symptom burden., Ethics and Dissemination: Approval of the ethics committee of the Ludwig Maximilian University Munich was received for all study parts. Results and experiences will be presented at congresses and in written form. Additionally, participating SPHC teams will receive summarised results., Trial Registration Number: NCT03879668., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: The use of drugs beyond their marketing authorisation, that is, off-label use, is common practice in palliative care with over 70% of off-label use having little or no scientific support. The lack of evidence makes recommendations for off-label use essential, in order to increase the safety of drug therapy and thus patient safety. The aim of this study was to develop a guide for preparing and consenting drug-specific recommendations for off-label use in palliative care., Methods: Group Delphi Study with three rounds and a prior online survey to identify topics of dissent. Participants represented professional groups working in palliative care involved in direct patient care and/or drug management and various care settings. Furthermore, representatives of relevant professional associations, experts with academic, non-clinical background and experts with international expertise were invited., Results: 18/20 invited professionals participated in the prior online-survey. 15 experts participated in the Group Delphi process. Six domains, including identification of drugs, drug uses, assessment of evidence, formulation, consensus and updating of recommendations were generated and respective statements were included in the Group Delphi process. The consensus process resulted in 28 statements forming the guide for recommendations., Conclusions: The resultant systematic approach for preparing and consenting drug-specific recommendations for off-label use will allow the development of recommendations with transparent and reproducible monographs. This will help to increase treatment quality and patient safety as well as security of decision-making in palliative care. The developed guide is part of a larger project aiming to provide therapy recommendations for areas that have little or no scientific evidence., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system., Aim: To develop a culturally adapted German version of the IPOS-Dem and determine its content validity as a foundation for comprehensive psychometric testing., Design: Cognitive interview study with intermittent analysis and questionnaire adaptation. Interview guide and coding frame followed thematic analysis according to Willis complemented by Tourangeau's model of cognitive aspects of survey methodology: comprehension, retrieval, judgment, response., Participants: Purposive sample with professionals ( n  = 29) and family carers ( n  = 6) of people with advanced dementia in seven nursing homes and person's own home care in four interview rounds ( n  = 11; 10; 7; 7)., Results: IPOS-Dem was regarded as comprehensive and accessible. Cultural adaption pertained to issues of comprehension and judgment. Comprehension challenges referred to the person-centered concept of "being affected by" used in the POS-measures. Judgment problems related to persons with limited communication causing challenges in assessment., Conclusion: Most issues of cultural adaptation could be addressed by questionnaire modifications. However, interviews unveiled fundamental challenges for using proxy reported person-centered assessments. Continuous training on how to use the instrument is imperative to integrate the person-centered approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia. The refined version is ready for psychometric testing.

Purpose: Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC., Methods: In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer., Results: Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach's α = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers' burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23-.69; p = 0.001)., Conclusion: The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.

Competing Interests: Die Autorinnen/Autoren geben an, dass kein Interessenkonflikt besteht.

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.

Background: The purpose of palliative medicine is to optimize the quality of life of patients with incurable, progressive diseases. The care delivered in actual clinical practice is not uniform and often takes insufficient account of the currently available scientific evidence., Methods: In accordance with the methodological directives on systematic literature reviews and consensus-finding that have been issued by the German Oncology Guideline Program (Leitlinienprogramm Onkologie), a nationwide, representative group of experts updated the previously published seven chapters of the S3 (evidence-based and consensus-based) guideline and formulated new recommen- dations on a further eight topics in palliative care., Results: Non-drug options for the treatment of fatigue include aerobic exercise and psycho-educative methods, particularly cognitive behavioral therapy. Sleep distur- bances can be treated with improved sleep hygiene and relaxation techniques, as well as with drugs: Z substances for short-term and sedating antidepressants for intermediate-term treatment. For nausea and vomiting, the first line of treatment consists of antidopaminergic drugs, such as haloperidol, or drugs with an antido- paminergic effect combined with a further receptor affinity, such as metoclopramide. For patients suffering from malignant intestinal obstruction (MIO), an important con- sideration for further treatment is whether the obstruction is complete or incomplete. Psychotherapeutic interventions are indicated for the treatment of anxiety., Conclusion: Multiple studies have confirmed the benefit of the early integration of palliative care for achieving the goals of better symptom control and maintenance of derate quality of evidence supporting the management of certain symptoms in patients with incurable cancers.

​INTRODUCTION: Randomised controlled trials (RCTs) have shown a positive effect of early integration of palliative care (EIPC) in various advanced cancer entities regarding patients' quality of life (QoL), survival, mood, caregiver burden and reduction of aggressiveness of treatment near the end of life. However, RCTs investigating the positive effect of EIPC for patients suffering from glioblastoma multiforme (GBM) are lacking. After modelling work identifying the specific needs of GBM patients and their caregivers, the aim of this study is to investigate the impact of EIPC in this particular patient group. ​METHODS AND ANALYSIS: The recruitment period of this multicenter RCT started in May 2019. GBM patients (n=214) and their caregivers will be randomly assigned to either the intervention group (receiving proactive EIPC on a monthly basis) or the control group (receiving treatment according to international standards and additional, regular assessment of QoL ('optimised' standard care)).The primary outcome is QoL assessed by subscales of the Functional Assessment of Cancer Therapy for brain tumour (FACT-Br) from baseline to 6 months of treatment. Secondary outcomes are changes in QoL after 12 (end of intervention), 18 and 24 months (end of follow-up), the full FACT-Br scale, patients' palliative care needs, depression/anxiety, cognitive impairment, caregiver burden, healthcare use, cost-effectiveness and overall survival. ​ETHICS AND DISSEMINATION: The study will be conducted in accordance with the Declaration of Helsinki and has been approved by the local ethics committees of the University Clinics of Cologne, Aachen, Bonn, Freiburg and Munich (LMU). Results of the trial will be submitted for publication in a peer-reviewed, open access journal and disseminated through presentations at conferences. TRIAL REGISTRATION NUMBER: German Register for Clinical Studies (DRKS) (DRKS00016066); Pre-results., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Context: Internationally, a variety of reimbursement systems exists for palliative care (PC). In Germany, PC units (PCUs) may choose between per-diem rates and diagnosis-related groups (DRGs). Both systems are controversially discussed. Objectives: To explore the experiences and views of German PCU clinicians and experts for PCU financing regarding per-diem rates and DRGs as reimbursement systems with a focus on (1) cost coverage, (2) strengths and weaknesses of both financing systems, and (3) options for further development of funding PCUs. Design: Qualitative semistructured interviews with PCU clinicians and experts for PCU financing, analyzed by thematic analysis using the Framework approach. Setting/Subjects/Measurements: Ten clinicians and 13 experts for financing were interviewed June-October 2015 on both reimbursement systems for PCU. Results: Interviewees had divergent experiences with both reimbursement systems regarding cost coverage. A described strength of per-diem rates was the perceived possibility of individual care without direct financial pressure. The nationwide variation of per-diem rates and the lack of quality standards were named as weaknesses. DRGs were criticized for incentives perceived as perverse and inadequate representation of PC-specific procedures. However, the quality standards for PCUs required within the German DRG system were described as important strength. Suggestions for improvement of the funding system pointed toward a combination of per-diem rates with a grading according to disease severity/complexity of care. Conclusions: Expert opinions suggest that neither current DRGs nor per-diem rates are ideal for funding of PCUs. Suggested improvements regarding adequate funding of PCUs resemble and supplement international developments.

Background: Few measures capture the complex symptoms and concerns of those receiving palliative care., Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change., Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale - both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test-retest reliability), and responsiveness (through longitudinal evaluation of change)., Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany., Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher - reflecting more problems - in those patients with 'unstable' or 'deteriorating' versus 'stable' Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy-General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test-retest reliability (60% of items k w  > 0.60). Longitudinal validity in form of responsiveness to change is good., Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.

Background: Drug use beyond the licence (off-label use, off-label drug use) is a common practice in palliative care and respective recommendations can often be identified in the literature. It is both risky and offers opportunities at the same time and, therefore, requires special attention in clinical practice., Aim: To determine the prevalence of off-label drug use in palliative care and to identify, evaluate and critically appraise studies describing the clinical practice, healthcare professionals' awareness, knowledge and attitudes towards off-label-use and management strategies., Design: Systematic literature review following the guidance of the Centre for Reviews and Dissemination., Data Sources: Medline, Embase, Web of Science and Current Contents Connect were searched in July 2018 as well as hand searches. The reference lists of pertinent studies were screened for further relevant publications, and citation tracking was performed., Results: Eight studies met the inclusion criteria. Due to the variety in study designs and settings, no meta-analysis or meaningful statistical analysis was possible and a narrative synthesis of the data was performed. Frequency of off-label drug use ranged from 14.5% to 35%. Up to 97% of palliative care units did not have any policy or guidance on handling off-label drug use. About 20% of prescribers never obtain consent in the context of off-label use., Conclusion: Off-label use is common in palliative care with up to one-third of prescriptions affected. Challenges are often related to obtaining informed consent. Little is known about the decision-making process. More information and guidance for the prescribers are needed to enable safe handling of drugs outside their licence in palliative care.

Background: The concept of complexity is used in palliative care (PC) to describe the nature of patients' situations and the extent of resulting needs and care demands. However, the term or concept is not clearly defined and operationalised with respect to its particular application in PC. As a complex problem, a care situation in PC is characterized by reciprocal, nonlinear relations and uncertainties. Dealing with complex problems necessitates problem-solving methods tailored to specific situations. The theory of complex adaptive systems (CAS) provides a framework for locating problems and solutions. This study aims to describe criteria contributing to complexity of PC situations from the professionals' view and to develop a conceptual framework to improve understanding of the concept of "complexity" and related elements of a PC situation by locating the complex problem "PC situation" in a CAS., Methods: Qualitative interview study with 42 semi-structured expert (clinical/economical/political) interviews. Data was analysed using the framework method. The thematic framework was developed inductively. Categories were reviewed, subsumed and connected considering CAS theory., Results: The CAS of a PC situation consists of three subsystems: patient, social system, and team. Agents in the "system patient" are allocated to further subsystems on patient level: physical, psycho-spiritual, and socio-cultural. The "social system" and the "system team" are composed of social agents, who affect the CAS as carriers of characteristics, roles, and relationships. Environmental factors interact with the care situation from outside the system. Agents within subsystems and subsystems themselves interact on all hierarchical system levels and shape the system behaviour of a PC situation., Conclusions: This paper provides a conceptual framework and comprehensive understanding of complexity in PC. The systemic view can help to understand and shape situations and dynamics of individual care situations; on higher hierarchical level, it can support an understanding and framework for the development of care structures and concepts. The framework provides a foundation for the development of a model to differentiate PC situations by complexity of patients and care needs. To enable an operationalisation and classification of complexity, relevant outcome measures mirroring the identified system elements should be identified and implemented in clinical practice.

Outcome measurement is becoming increasingly important in palliative care both in research as well as clinical care. Regular ongoing assessments in palliative care clinical practice have the potential to enable monitoring of the patient's situation, assess the effectiveness of interventions, assess symptoms accurately and focus on patients' priorities. Implementing routine outcome measurement into clinical practice remains a challenge. Therefore, the aim of this article is to describe the process of implementing routine outcome measurement into daily clinical work in a university palliative care unit. According to the recommendations of Antunes, the following steps were used to implement routine outcome measurement in clinical care in a university palliative care unit. (I) Selection of outcomes of interest by the clinical leads and head of department: most prevalent symptoms; psychological, practical and spiritual concerns, functional status, carer burden; (II) selection of outcome measures: Integrated Palliative Care Outcome Scale (IPOS), phase of illness, Australian Karnofsky Performance Status; (III) educational component about the measure and how to use results: team meetings and team retreat with introduction of outcome measurement in palliative care, chosen measures and role plays with use of measures; (IV) selection of responsible consultant on the ward as coordinator and facilitator for outcome measurement; (V) who applies the measure and its periodicity. Implementation of outcome measurement in clinical routine is feasible following a structured process. Nevertheless, it is a time consuming and long-lasting process which needs continuous attention. However, the benefits outweigh the burden of implementation and it is a task worthwhile undertaking.

Background: Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'., Aim: To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palliative care unit., Design: Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23)., Setting/participants: Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol ⩾5 mg/day and propofol., Results: Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term '(palliative) sedation' was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0-185.0) mg vs 11.5 (1.0-70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5-240.0) mg vs 12.5 (2.0-65.0) mg, p = 0.01). The dose range was large in both groups., Conclusion: The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as '(palliative) sedation'. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care.

Background: In 2015, an evidence- and consensus-based palliative care guideline in adults with incurable cancer was published by the German Guideline Program. Barriers and enablers for the guideline implementation of members of the German Association for Palliative Medicine (DGP) were unknown. Therefore, the aims of this study were (1) to evaluate professionals' knowledge, motivation, and outcome expectancy towards already existing recommendations for palliative care and (2) to evaluate the self-experienced competence in five medical key topics presented in the new guideline., Methods: A web-based online survey with all DGP members in 2014 using a specifically designed questionnaire including 62 questions was used. Independent predictors for identified barriers were analysed using multivariable logistic regression analyses., Results: All 4786 members with known email address were invited, 1181 followed the link, 1138 began to answer, and 1031 completed the questionnaire. Fifty-four percent know already existing recommendations concerning palliative care, 8.4% know and use these recommendations; of the latter group, 44.2% do not notice any improvement of their treatment when applying them. Of key symptoms addressed in the guideline, depression was the symptom with lowest perceived competence (63.7 vs. > 90% for other symptoms). Non-physicians and those working in settings with little contact to seriously ill or dying patients feel less competent in almost all symptoms., Conclusion: Emphasis on the high-quality and evidence- and consensus-based character of the guideline should be underlined in future implementation processes. Implementation strategies should focus on depression and non-physicians and those professionals working in settings with little contact to seriously ill patients.

Background: Hospital costs and cost drivers in palliative care are poorly analysed. It remains unknown whether current German Diagnosis-Related Groups, mainly relying on main diagnosis or procedure, reproduce costs adequately. The aim of this study was therefore to analyse costs and reimbursement for inpatient palliative care and to identify relevant cost drivers., Methods: Two-center, standardised micro-costing approach with patient-level cost calculations and analysis of the reimbursement situation for patients receiving palliative care at two German hospitals (7/2012-12/2013). Data were analysed for the total group receiving hospital care covering, but not exclusively, palliative care (group A) and the subgroup receiving palliative care only (group B). Patient and care characteristics predictive of inpatient costs of palliative care were derived by generalised linear models and investigated by classification and regression tree analysis., Results: Between 7/2012 and 12/2013, 2151 patients received care in the two hospitals including, but not exclusively, on the PCUs (group A). In 2013, 784 patients received care on the two PCUs only (group B). Mean total costs per case were € 7392 (SD 7897) (group A) and € 5763 (SD 3664) (group B), mean total reimbursement per case € 5155 (SD 6347) (group A) and € 4278 (SD 2194) (group B). For group A/B on the ward, 58%/67% of the overall costs and 48%/53%, 65%/82% and 64%/72% of costs for nursing, physicians and infrastructure were reimbursed, respectively. Main diagnosis did not significantly influence costs. However, duration of palliative care and total length of stay were (related to the cost calculation method) identified as significant cost drivers., Conclusions: Related to the cost calculation method, total length of stay and duration of palliative care were identified as significant cost drivers. In contrast, main diagnosis did not reflect costs. In addition, results show that reimbursement within the German Diagnosis-Related Groups system does not reproduce the costs adequately, but causes a financing gap for inpatient palliative care.

Palliative medicine has become an integral part of the German healthcare system in recent years. However, patients with non-malignant diseases have less access to palliative care than patients with oncological diseases. These patients comprise a heterogeneous group of chronic lung and heart diseases, neurological and geriatric diseases. Their symptom burden and their palliative care needs are similar to those of oncological patients, but earlier in the disease process. Physical aspects of the disease process are different from psychological, social and spiritual aspects. General medical and specialized palliative care should be offered depending on the complexity of patient's needs. Screening tools are helpful in identifying patients who need palliative care early in the course of the disease. Advance planning should be an integral part of caring for these patients., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (© Georg Thieme Verlag KG Stuttgart · New York.)

Purpose: The aim of this study was to evaluate the effect of a pilot interdisciplinary inhouse training in palliative care (PC) for gynecological oncologists., Methods: Competencies of participants from a gynecological university department were evaluated taking part in an interdisciplinary PC course in a pre and post design. The multiprofessional course covered basic principles of PC, symptom management and communication taught by PC specialists. Competencies were evaluated using self-designed questionnaires before (ISPG-1), right after (ISPG-2), and 6 months after the training (ISPG-3) (inhouse seminar palliative care in gynecology: ISPG)., Results: 31 persons from the department of gynecology took part in the course, of which 27 answered the first questionnaire (seven nurses (26%), 19 doctors (71%), one profession not indicated (3%), median working experience in gynecological oncology: 5 years). Return rates were: ISPG-1 27/31 (87.1%), ISPG-2 20/31 (64.5%) and IPSG-3 14/31 (45.2%). A more positive attitude towards PC could be observed in the majority of participants after the course (ISPG-2 62%, ISPG-3 71%). They felt more competent in the care of palliative patients (46%). PC would be initiated earlier and the interaction with other disciplines was improved (ISPG-2 85%, ISPG-3 100%). The participants assessed a significant improvement of their skills in all palliative fields which were analyzed., Conclusion: PC inhouse training improves the understanding of PC and the interdisciplinary approach in the management of patients with advanced disease. It is a feasible and useful instrument to improve the competencies in generalist PC of specialists in gynecological oncology.

Background: Data to estimate the palliative care needs and its outpatient coverage are of public health interest., Methods: The theoretical palliative care needs were determined on the basis of a population with advanced cancer in selected regions of Westphalia (Germany); information from evaluated death certificates issued in 2011 in the cities of Bochum (BO) and Muenster (MS) and the rural districts of Coesfeld (COE) and Borken (BOR) were used for the analysis. The number of patients thus assessed was linked to anonymized data from the regional palliative home care teams and an estimate was made on the extent of palliative care provision., Results: A total of 12,424 death certificates from 2011 were evaluated. In 22.1% (n=2,751), palliative care needs before death can be assumed. In the same year, 2,396 patients were cared for by the regional palliative home care teams, with 1,288 patients dying of cancer. The coverage of outpatient palliative care was calculated as follows: BO 54.2% (567/1,046), MS 60.6% (385/635), COE 54.4% (210/386), BOR 18.4% (126/684)., Conclusions: One in 5 individuals has a need for palliative care before death. In statistical terms, more than 50% of tumor patients were cared for by regional palliative home care teams in the cities of Bochum and Muenster and the rural district of Coesfeld. By contrast, the degree of palliative care was less than 20% in the rural district of Borken., Competing Interests: Interessenkonflikt:: Dr. Dasch und Prof. Bausewein erklären, dass kein Interessenskonflikt besteht. Herr Blum erhielt Erstattungen für Kongressgebühren sowie Reise- und Übernachtungskosten von Mundipharma., (© Georg Thieme Verlag KG Stuttgart · New York.)

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified., Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs., Design: A cross-sectional secondary analysis of data from a randomised controlled trial., Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London., Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients., Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them., Aim: To assess national models and methods for financing and reimbursing palliative care., Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms., Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs., Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

Background: Little is known about palliative care professionals' attitudes towards guidelines. In 2015, the German Association for Palliative Medicine (DGP) published an evidence based guideline for palliative care in adults with incurable cancer. Before publication we conducted a national survey among members of the DGP to detect possible barriers and facilitators for its implementation. The aim of the present publication was to evaluate critical attitudes and beliefs which could hinder the effective implementation of the new guideline and to evaluate differences within professional groups and medical specialisations., Methods: This web-based online survey was addressed to all members of the DGP in summer 2014. Twenty-one questions concerning attitudes and beliefs towards guidelines were a priori developed to represent the following topics: scepticism regarding the quality of guidelines, doubts about the implementation of guidelines, restrictions in treatment options through guidelines, discrepancy between palliative care values and guidelines. Differences within professions and specialisations were tested using Kruskal-Wallis tests., Results: All 4.786 members with known email address were invited, 1.181 followed the link, 1.138 began to answer the questionnaire and 1.031 completed the questionnaire. More than half of participating members were physicians and one third nurses. Scepticism regarding the quality of existing guidelines was high (range 12.8-73.2%). Doubts regarding practical aspects of guidelines were less prevalent but still high (range 21.8-57.6%). About one third (range 5.4-31.4%) think that guidelines restrict their treatment options. In addition, 38.8% believed that guidelines are a kind of cookbook and restrict the flexibility of individual patient care. The majority saw no or little discrepancy between palliative care values and guidelines (range 68.4-82.6%). There were relatively small but significant differences between professions and specialisations., Conclusion: The person-centred and individual approach of palliative care does not seem to contradict the acceptance of guidelines. Main barriers were related to scepticism regarding the quality of guidelines and the implementation of guidelines in general.

Background: Breathlessness is a frequent and distressing symptom in advanced disease. It can have a significant impact on the quality of life of both patients and relatives., Objectives: A summary of nonpharmacological and pharmacological measures for breathlessness based on existing evidence is provided., Materials and Methods: Analysis of primary studies, reviews and guidelines for the named symptoms and their management were analyzed., Results: Recognition and assessment are essential for the management of breathlessness. Management includes various nonpharmacological and pharmacological measures, which should be combined for best results. Nonpharmacological strategies comprise general information, management plan, hand-held fan, physical activity, and rollators. Opioids are the drugs of choice for intractable breathlessness. The evidence base for benzodiazepines and other drugs is rather weak., Conclusion: A number of treatment options, especially in the nonpharmacological area, help the patients to better cope with their breathlessness.

Context: Dignity is poorly conceptualized and little empirically explored in end-of-life care. A qualitative evaluation of a service offering integrated palliative and respiratory care for patients with advanced disease and refractory breathlessness uncovered an unexpected outcome, it enhanced patients' dignity., Objectives: To analyze what constitutes dignity for people suffering from refractory breathlessness with advanced disease, and its implications for the concept of dignity., Methods: Qualitative study of cross-sectional interviews with 20 patients as part of a Phase III evaluation of a randomized controlled fast-track trial. The interviews were transcribed verbatim, imported into NVivo, and analyzed through constant comparison. The findings were compared with Chochinov et al.'s dignity model. The model was adapted with the themes and subthemes specific to patients suffering from breathlessness., Results: The findings of this study underscore the applicability of the conceptual model of dignity for patients with breathlessness. There were many similarities in themes and subthemes. Differences specifically relevant for patients suffering from severe breathlessness were as follows: 1) physical distress and psychological mechanisms are interlinked with the disability and dependence breathlessness causes, in the illness-related concerns, 2) stigma is an important component of the social dignity inventory, 3) conditions and perspectives need to be present to practice self-care in the dignity-conserving repertoire., Conclusion: Dignity is an integrated concept and can be affected by influences from other areas such as illness-related concerns. The intervention shows that targeting the symptom holistically and equipping patients with the means for self-care realized the outcome of dignity., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Medical errors have been recognized as a relevant public health concern and research efforts to improve patient safety have increased. In palliative care, however, studies on errors are rare and mainly focus on quantitative measures. We aimed to explore how palliative care patients perceive and think about errors in palliative care and to generate an understanding of patients' perception of errors in that specialty., Methods: A semistructured qualitative interview study was conducted with patients who had received at least 1 week of palliative care in an inpatient or outpatient setting. All interviews were transcribed verbatim and analysed according to qualitative content analysis., Results: Twelve patients from two centers were interviewed (7 women, median age 63.5 years, range 22-90 years). Eleven patients suffered from a malignancy. Days in palliative care ranged from 10 to 180 days (median 28 days). 96 categories emerged which were summed up under 11 umbrella terms definition, difference, type, cause, consequence, meaning, recognition, handling, prevention, person causing and affected person. A deductive model was developed assigning umbrella terms to error-theory-based factor levels (definition, type and process-related factors). 23 categories for type of error were identified, including 12 categories that can be considered as palliative care specific. On the level of process-related factors 3 palliative care specific categories emerged (recognition, meaning and consequence of errors)., Conclusion: From the patients' perspective, there are some aspects of errors that could be considered as specific to palliative care. As the results of our study suggest, these palliative care-specific aspects seem to be very important from the patients' point of view and should receive further investigation. Moreover, the findings of this study can serve as a guide to further assess single aspects or categories of errors in palliative care in future research.