Benchmarking palliative care practices in neurooncology: a german perspective.

PURPOSE: To benchmark palliative care practices in neurooncology centers across Germany, evaluating the variability in palliative care integration, timing, and involvement in tumor board discussions. This study aims to identify gaps in care and contribute to the discourse on optimal palliative care strategies. METHODS: A survey targeting both German Cancer Society-certified and non-certified university neurooncology centers was conducted to explore palliative care frameworks and practices for neurooncological patients. The survey included questions on palliative care department availability, involvement in tumor boards, timing of palliative care integration, and use of standardized screening tools for assessing palliative burden and psycho-oncological distress. RESULTS: Of 57 centers contacted, 46 responded (81% response rate). Results indicate a dedicated palliative care department in 76.1% of centers, with palliative specialists participating in tumor board discussions at 34.8% of centers. Variability was noted in the initiation of palliative care, with early integration at the diagnosis stage in only 30.4% of centers. The survey highlighted a significant lack of standardized spiritual care assessments and minimal use of advanced care planning. Discrepancies were observed in the documentation and treatment of palliative care symptoms and social complaints, underscoring the need for comprehensive care approaches. CONCLUSION: The study highlights a diverse landscape of palliative care provision within German neurooncology centers, underscoring the need for more standardized practices and early integration of palliative care. It suggests the necessity for standardized protocols and guidelines to enhance palliative care's quality and uniformity, ultimately improving patient-centered care in neurooncology.

Perceptions of Quality of Interprofessional Collaboration, Staff Well-Being and Nonbeneficial Treatment: A Comparison between Nurses and Physicians in Intensive and Palliative Care.

This study assessed differences in interprofessional collaboration, perception of nonbeneficial care, and staff well-being between critical care and palliative care teams. In six German hospitals, a staff survey was conducted between December 2013 and March 2015 among nurses and physicians in intensive and palliative care units. To allow comparability between unit types, a matching was performed for demographic characteristics of staff. N = 313 critical care and 79 palliative care staff participated, of which 72 each were successfully matched. Critical care nurses perceived the poorest overall quality of collaboration compared with critical care physicians and palliative care physicians and nurses. They also reported less inclusive leadership from attendings and head nurses, and the least collaboration on care decisions with physicians. They were most likely to perceive nonbeneficial care, and they reported the lowest levels of job satisfaction and the highest intention to leave the job. In partial correlations, aspects of high-quality collaboration were associated with less perceived nonbeneficial care and higher staff well-being for both critical care and palliative care staff. Our findings indicate that critical care teams could improve collaboration and enhance well-being, particularly among nurses, by adopting principles of collaborative work culture as established in palliative care.

Palliative care for patients with hematologic malignancies in Germany: a nationwide survey on everyday practice and influencing factors from the perspective of treating physicians.

Integrating palliative care into the treatment of patients with advanced hematological malignancies (HM) remains challenging. To explore treating physicians' perspectives on current palliative care practice and to evaluate factors influencing integration, we conducted a nationwide online survey. Based on literature and expert review, the survey addressed the importance of palliative care, communication about life-threatening conditions, challenges in establishing goals of care, and factors influencing the integration of palliative care. 207 physicians treating patients with HM in Germany participated. We used standard descriptive statistics to analyze quantitative data and a content structuring approach. Most physicians considered palliative care in HM to be very important (60.6%) and discussed life-threatening conditions with more than half of their patients (52%), especially when goals of care were changed (87.0%) or when patients raised the topic (84.0%). Disease-related factors, different professional perspectives on prognosis, and patient hopes were the main barriers to changing goals of care, but collaboration with colleagues and multidisciplinary teams provided important support. Time constraints were identified as the main barrier to integrating palliative care. The majority worked well with palliative care teams. Referral processes and conditions were perceived as minor barriers. The study highlights the need to address barriers to integrating palliative care into the management of patients with advanced HM. Future research should aim at optimizing palliative care for patients with HM.

Prioritization and resource allocation in the context of the COVID-19 pandemic. Recommendations for colorectal and pancreatic cancer in Germany.

In the context of the COVID-19 pandemic, there has been a scarcity of resources with various effects on the care of cancer patients. This paper provides an English summary of a German guideline on prioritization and resource allocation for colorectal and pancreatic cancer in the context of the pandemic. Based on a selective literature review as well as empirical and ethical analyses, the research team of the CancerCOVID Consortium drafted recommendations for prioritizing diagnostic and treatment measures for both entities. The final version of the guideline received consent from the executive boards of nine societies of the Association of Scientific Medical Societies in Germany (AWMF), 20 further professional organizations and 22 other experts from various disciplines as well as patient representatives. The guiding principle for the prioritization of decisions is the minimization of harm. Prioritization decisions to fulfill this overall goal should be guided by 1. the urgency relevant to avoid or reduce harm; 2. the likelihood of success of the diagnostic or therapeutic measure advised; and 3. the availability of alternative treatment options. In the event of a relevant risk of harm as a result of prioritization, these decisions should be made by means of a team approach. Gender, age, disability, ethnicity, origin and other social characteristics, such as social or insurance status, as well as the vehemence of a patient's treatment request and SARS-CoV-2 vaccination status should not be used as prioritization criteria. The guideline provides concrete recommendations for 1. diagnostic procedures, 2. surgical procedures for cancer, and 3. systemic treatment and radiotherapy in patients with colorectal or pancreatic cancer within the context of the German healthcare system.

Leave no one behind: A global survey of the current state of geriatric oncology practice by SIOG national representatives.

INTRODUCTION: The Sustainable Development Goals of the United Nations include a commitment to "leave no one behind" as a universal goal. To achieve this in geriatric oncology (GO) worldwide, it is important to understand the current state of GO at an international level. The International Society of Geriatric Oncology (SIOG) has several National Representatives (NRs) who act as SIOG's delegates in their respective countries. The NRs took part in this international survey exploring the state of GO practice, identifying barriers and solutions. MATERIALS AND METHODS: The NRs answered open-ended questions by email from February 2020 to October 2022. The questionnaire domains included the demographic information of older adults for their countries, and the NRs' opinions on whether GO is developing, what the barriers are to developing GO, and proposed actions to remove these barriers. The demographic data of each country reported in the survey was adjusted using literature and database searches. RESULTS: Twenty-one of thirty countries with NRs (70%) participated in this questionnaire study: 12 European, four Asian, two North American, two South American, and one Oceanian. The proportion of the population aged ≥75 years varied from 2.2% to 15.8%, and the average life expectancy also varied from 70 years to 86 years. All NRs reported that GO was developing in their country; four NRs (18%) reported that GO was well developed. Although all NRs agreed that geriatric assessment was useful, only three reported that it was used day-to-day in their countries' clinical practice (14%). The major barriers identified were the lack of (i) evidence to support GO use, (ii) awareness and interest in GO, and (iii) resources (time, manpower, and funding). The major proposed actions were to (i) provide new evidence through clinical trials specific for GO patients, (ii) stimulate awareness through networking, and (iii) deliver educational materials and information to healthcare providers and medical students. DISCUSSION: This current survey has identified the barriers to GO and proposed actions that could remove them. Broader awareness seems to be essential to implementing GO. Additional actions are needed to develop GO within countries and can be supported through international partnerships.

Structural characteristics and contractual terms of specialist palliative homecare in Germany.

BACKGROUND: Multi-professional specialist palliative homecare (SPHC) teams care for palliative patients with complex symptoms. In Germany, the SPHC directive regulates care provision, but model contracts for each federal state are heterogeneous regarding staff requirements, cooperation with other healthcare providers, and financial reimbursement. The structural characteristics of SPHC teams also vary. AIM: We provide a structured overview of the existing model contracts, as well as a nationwide assessment of SPHC teams and their structural characteristics. Furthermore, we explore whether these characteristics serve to find specifc patterns of SPHC team models, based on empirical data. METHODS: This study is part of the multi-methods research project "SAVOIR", funded by the German Innovations Fund. Most model contracts are publicly available. Structural characteristics (e.g. number, professions, and affiliations of team members, and external cooperation) were assessed via an online database ("Wegweiser Hospiz- und Palliativversorgung") based on voluntary information obtained from SPHC teams. All the data were updated by phone during the assessment process. Data were descriptively analysed regarding staff, cooperation requirements, and reimbursement schemes, while latent class analysis (LCA) was used to identify structural team models. RESULTS: Model contracts have heterogeneous contract partners and terms related to staff requirements (number and qualifications) and cooperation with other services. Fourteen reimbursement schemes were available, all combining different payment models. Of the 283 SPHC teams, 196 provided structural characteristics. Teams reported between one and 298 members (mean: 30.3, median: 18), mainly nurses and physicians, while 37.8% had a psychosocial professional as a team member. Most teams were composed of nurses and physicians employed in different settings; for example, staff was employed by the team, in private practices/nursing services, or in hospitals. Latent class analysis identified four structural team models, based on the team size, team members' affiliation, and care organisation. CONCLUSION: Both the contractual terms and teams' structural characteristics vary substantially, and this must be considered when analysing patient data from SPHC. The identified patterns of team models can form a starting point from which to analyse different forms of care provision and their impact on care quality.

[A regional comparison of outcomes quality and costs of general and specialized palliative care in Germany: a claims data analysis]. / Ergebnisqualität und Kosten der allgemeinen und spezialisierten Palliativversorgung in Deutschland im regionalen Vergleich: eine GKV-Routinedatenstudie.

BACKGROUND: The main framework conditions for palliative care are set at the regional level. The scope of the forms of care used (outpatient, inpatient, general, specialized) varies widely. What is the quality of outcomes achieved by the palliative care provided on a federal states level? What are the associated costs of care? METHOD: Retrospective observational study using BARMER claims data from 145,372 individuals who died between 2016 and 2019 and had palliative care in the last year of life. Regional comparison with regard to the following outcomes: proportion of palliative care patients who died in the hospital, potentially burdensome care in the last 30 days of life (ambulance calls, [intensive care] hospitalizations, chemotherapy, feeding tubes, parenteral nutrition), total cost of care (last three months), cost of palliative care (last year), and cost-effectiveness ratios. Calculation of patient/resident characteristic adjusted rates, costs, and ratios. RESULTS: Federal states vary significantly with respect to the outcomes (also adjusted) of palliative care. Palliative care costs vary widely, most strongly for specialized outpatient palliative care (SAPV). Across all indicators and the cost-effectiveness ratio of total cost of care to at-home deaths, Westphalia-Lippe shows favorable results. CONCLUSION: Regions with better quality and more favorable cost (ratios) can provide guidance for other regions. The extent to which the new federal SAPV agreement can incorporate the empirical findings should be reviewed. Patient-relevant outcome parameters should be given greater weight than parameters aiming at structures of care.

Knowledge, feelings, and willingness to use palliative care in cancer patients with hematologic malignancies and solid tumors: a prospective, cross-sectional study in a comprehensive cancer center in Germany.

PURPOSE: Patients with hematologic malignancies (HM) receive palliative care (PC) less often and later than patients with solid tumors (ST). Patients' lack of knowledge about PC and negative feelings about PC are barriers to their willingness to use PC. Is there a difference between patients with HM and ST in their knowledge and willingness to use PC? METHODS: Two hundred ten patients (85 HM, 125 ST) from an oncology day clinic at a university hospital participated in this cross-sectional, questionnaire-based survey. RESULTS: Patients with HM and ST had high knowledge and mainly positive feelings about PC. More than half of the patients answered that they would feel reassured by the use of PC, and one-third would feel anxious or hopeless. The majority of patients (58.3%) were willing to use PC. There are no significant differences between patients with HM and ST. In multiple regression analysis, perceived chance of cure and feelings of reassurance and anxiety are associated with willingness to use PC, but not with the HM/ST disease group. More than half (53.9%) of the participants would like the treating physician to choose the timing of a discussion about PC. CONCLUSION: Our study shows a high level of knowledge and relatively positive feelings of patients about PC, with no differences between patients with HM or ST. They expect their treating physician to initiate communication about PC. Communication should include the patient's feelings about PC and their chances of a cure.

Systematic symptom screening in patients with advanced cancer treated in certified oncology centers: results of the prospective multicenter German KeSBa project.

PURPOSE: Guidelines recommend a structured symptom screening (SC) for especially advanced cancer patients (CPs). The aim of this multicenter German prospective quality assurance project KeSBa (Kennzahl Symptom- und Belastungserfassung) was to gain knowledge on SC procedures in Oncology Centers (OCs) for advanced cancer patients and a first impression on the consequences of SC. METHODS: The KeSBa project consisted of three phases: pilot, 3 months screening and feedback phase. Participating OCs decided to use either the Minimal Documentation System (MIDOS) or the Integrated Palliative care Outcome Scale (IPOS) and defined the cutoff values for positive screening results. RESULTS: Out of 172 certified German OCs, 40 (23%) participated in the KeSBa pilot phase, 29 (16.8%) in the 3 months screening phase using MIDOS (n = 18, 58.6%) or IPOS (n = 11, 41.3%) and in the feedback round. 25/29 performed paper-based screening (86.2%). 2.963 CPs were screened. Results were documented for 1255 (42.2%, SC +) positive and 874 (29.5%, SC-) negative screenings depending on the center´s schedules: 452 SC + CPs (28.4%) and 42 SC- CPs (2.6%) had contact to specialized palliative care or other supportive specialist teams afterwards, 458 SC + CPs (28.8%) and 605 SC- CPs (38.1%) remained in standard oncology care. In the feedback round missing resources (personal and IT) and improved communication were mentioned most often. CONCLUSION: Routine SC is feasible in advanced CPs treated in OCs but associated with considerable workload. In 42.2% of CPs SC was classified as positive, indicating the need of further diagnostics or professional judgment. SC requires staff and IT resources.

[Utilization of palliative care at the end of life in Germany: temporal trend (2016-2019) and regional variability]. / Inanspruchnahme von Palliativversorgung am Lebensende in Deutschland: zeitlicher Verlauf (2016­2019) und regionale Variabilität.

BACKGROUND: In Germany, palliative care (PC) is provided on a homecare, inpatient, general, and specialized basis. Since little is currently known about the temporal course and regional differences in the forms of care, the present study was aimed to investigate this. METHOD: In a retrospective routine data study with 417,405 BARMER-insured persons who died between 2016 and 2019, we determined the utilization rates of primary PC (PPC), specially qualified and coordinated palliative homecare (PPC+), specialized palliative homecare (SPHC), inpatient PC, and hospice care on the basis of services billed at least once in the last year of life. We calculated time trends and regional variability and controlled for needs-related patient characteristics and access-related county of community characteristics. RESULTS: From 2016 to 2019, total PC increased from 33.8 to 36.2%, SPHC from 13.3 to 16.0% (max: Rhineland-Palatinate), and inpatient PC from 8.9 to 9.9% (max: Thuringia). PPC decreased from 25.8 to 23.9% (min: Brandenburg) and PPC+ came in at 4.4% (max: Saarland) in 2019. Hospice care remained constant at 3.4%. Regional variability in utilization rates remained high, increased for PPC and inpatient PC from 2016 to 2019, and decreased for SPHC and hospice care. The regional differences were also evident after adjustment. CONCLUSION: Increasingly more SPHC, less PPC, and high regional variability, which cannot be explained by demand- or access-related characteristics, indicate that the use of PC forms is oriented less to demand than to regionally available care capacities. In view of the growing need for palliative care due to demographic factors and decreasing personnel resources, this development must be viewed critically.

First-line Treatment With Bendamustine and Rituximab for Old and Frail Patients With Aggressive Lymphoma: Results of the B-R-ENDA Trial.

The incidence of aggressive B-cell lymphomas increases with age, but for elderly or frail patients not eligible for doxorubicin-containing treatment standard therapy remains to be defined. In this prospective, multicenter, phase-2 B-R-ENDA trial, we investigated the feasibility, toxicity, and efficacy of 8 cycles rituximab combined with 6 cycles bendamustine (BR) in elderly or frail aggressive B-cell lymphoma patients: 39 patients aged >80 years and 29 patients aged 61-80 years with elevated Cumulative Illness Rating Scalescore >6 were included. Progression-free survival (PFS) and overall survival (OS) at 2 years were 45% (95% confidence interval [CI], 28%-61%) and 46% (28%-63%) for the patients age >80, as well 32% (13%-51%) and 37% (17%-57%) for frail patients age 64-80, respectively. In a preplanned retrospective analysis, we found no significant differences in PFS and OS comparing the outcome of the 39 patients age >80 years with 40 patients aged 76-80 years treated with 6xR-CHOP (cyclophosphamide, doxorubicin, vincristine, prednisolone) and 2 x rituximab in the RICOVER-60 trial (DSHNHL 1999-1, NCT00052936, EU-20243), yet we detected lower rates of infections and treatment-related deaths in the BR-treated patients. We demonstrate that older and frail patients with aggressive B-cell lymphoma who are not able to receive standard CHOP-based therapy can benefit from anthracycline-free therapy as a feasible and effective therapeutic option.

Prepared to Accompany the End of Life during Pandemics in Nursing Homes.

BACKGROUND: The COVID-19 pandemic confronted nursing homes with a variety of challenges to ensure the provision of palliative care for residents. PallPan-Implement aimed to adapt the recommendations of the National Strategy for the Care of Seriously Ill, Dying Adults and their Families in Times of Pandemic (PALLPAN) in such a way that nursing facilities can use and implement them. METHODS: Based on 33 PALLPAN recommendations, we developed a questionnaire, conducted a pilot implementation for selected nursing homes, and asked for qualitative feedback. RESULTS: The developed questionnaire contains 22 main questions. A three-stage pilot implementation with an introductory event, processing phase, and evaluation event took place in seven facilities. The facilities evaluated the developed questionnaire as helpful. Feedback from the facilities identified three major categories: (a) requirements for facilities should be realistic to avoid frustration, (b) the creation of a pandemic plan for palliative care only is impractical, (c) measures for the psychosocial support of staff is particularly necessary, but was perceived as difficult to implement. CONCLUSIONS: The practical implementation of recommendations requires a concept and material tailored to facilities and areas. The strategy of PallPan Implement developed in this project appears to be target-oriented, well-received, and can be recommended for further implementation.

[DNVF Memorandum: Health Services Research in the Last Year of Life]. / DNVF-Memorandum Versorgungsforschung im letzten Lebensjahr.

This memorandum outlines current issues concerning health services research on seriously ill and dying people in the last year of their lives as well as support available for their relatives. Patients in the last phase of life can belong to different disease groups, they may have special characteristics (e. g., people with cognitive and complex impairments, economic disadvantage or migration background) and be in certain phases of life (e. g., parents of minor children, (old) age). The need for a designated memorandum on health services research in the last year of life results from the special situation of those affected and from the special features of health services in this phase of life. With reference to these special features, this memorandum describes methodological and ethical specifics as well as current issues in health services research and how these can be adequately addressed using quantitative, qualitative and mixed methods. It has been developed by the palliative medicine section of the German Network for Health Services Research (DNVF) according to the guidelines for DNVF memoranda.

["Creativity and a Mindset Shift were Essential." Impact of the COVID-19 Pandemic on Specialized Palliative Home: A Nationwide Online Survey]. / "Es waren Kreativität und Umdenken erforderlich." Auswirkungen der COVID-19 Pandemie auf die spezialisierte ambulante Palliativversorgung (SAPV). Eine bundesweite Onlinebefragung.

Objectives The aim of this study was to explore the impact of the COVID-19 pandemic and the efforts taken to contain it on specialized palliative homecare (SPHC) practice from the perspective of SPHC team leaders.Methods In this cross-sectional study, an online questionnaire with quantitative and qualitative questions was developed and used, focusing on the experience of SAPV in the first and second wave of the COVID-19 pandemic in Germany. In a structured recruitment process, all German SPHC teams (n=357) were invited to participate. Results From 10/10/2020 to 07/01/2021, 154 SPHC teams participated (response rate 43%). They described clear effects of the COVID-19 pandemic on their activities. Despite pandemic-related problems with staff availability (78.5%), patient care was ensured without major problems. The number of patients to be cared for remained stable for most teams, was increasing for some, and decreasing only for a few. A central factor was the switch from direct contact with patients and their relatives to telephone contact. Additional complicating factors were the general avoidance of contacts, compliance with hygiene regulations for necessary personal contacts, and pandemic-related uncertainties and fears, both among the team itself and among relatives and patients. The procurement of protective equipment was a challenge during the first wave. Problems in collaboration with network partners (e. g., nursing homes and volunteer hospice services) had decreased over the course of the pandemic, but were greater than before in all areas. Many measures to cope with the pandemic challenges were implemented, others were assessed as useful but not implemented, and others as not useful or feasible. Conclusions SPHC teams report that despite the need to adapt many processes to the pandemic situation, they have managed to maintain patient care, although under more difficult conditions.