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Respiratory symptoms are ubiquitous and impair health-related quality of life in people with respiratory disease. This European Respiratory Society (ERS) task force aimed to provide recommendations for symptomatic treatment in people with serious respiratory illness. The ERS task force comprised 16 members, including representatives of people with serious respiratory illness and informal caregivers. Seven questions were formulated, six in the PICO (Population, Intervention, Comparison, Outcome) format, which were addressed with full systematic reviews and evidence assessed using GRADE (Grading of Recommendations Assessment, Development and Evaluation). One question was addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. To treat symptoms in people with serious respiratory illness, the task force suggests the use of graded exercise therapy (conditional recommendation, low certainty of evidence); and suggests the use of a multicomponent services, handheld fan and breathing techniques (conditional recommendations, very low certainty of evidence). The task force suggests not to use opioids (conditional recommendation, very low certainty of evidence); and suggests either administering or not administering supplemental oxygen therapy (conditional recommendation, low certainty of evidence). The task force suggests that needs assessment tools may be used as part of a comprehensive needs assessment, but do not replace patient-centred care and shared decision making (conditional recommendation, low certainty of evidence). The low certainty of evidence, modest impact of interventions on patient-centred outcomes, and absence of effective strategies to ameliorate cough highlight the need for new approaches to reduce symptoms and enhance wellbeing for individuals who live with serious respiratory illness., Competing Interests: Conflict of interest: A.E. Holland reports non-financial support from BOC Australia and Air Liquide Australia for oxygen therapy clinical trials, outside the submitted work. K. Marsaa reports lectures fees from GlaxoSmithKline, AstraZeneca, Novartis and Boehringer Ingelheim, outside the submitted work. A-M. Russell declares speaker fees and support for the development of a podcast series from Boehringer Ingelheim, and speaker fees from Hoffman La Roche, outside the submitted work. R. Saggu reports, within the past 2 years, speaker fees from GSK and TEVA, support for conference attendance and advisory board participation from GSK, Sanofi, AZ and TEVA, and has carried out clinical educator commissioned work for RCGP and RPS. J. Solheim declares membership of the Pulmonary Fibrosis Early Research Steering Committee, Boehringer Ingelheim. M. Wijsenbeek reports grants (paid to institution) from The Dutch Pulmonary Fibrosis Patients Association, The Dutch Lung Foundation, The Netherlands Organisation for Health Research and Development, The Thorax Foundation, Sarcoidosis.nl, AstraZeneca/Daiichi-Sankyo, Boehringer Ingelheim (BI) and Hoffmann-La Roche, and consulting or speaker fees (paid to institution) from AstraZeneca, BI, Bristol Myers Squibb, CSL Behring, Galapagos, Galecto, Hoffmann-La Roche, Horizon, Kinevant Sciences, Molecure, NeRRe, Novartis, PureTech, Thyron, Trevi and Vicore. T. Tonia declares acting as ERS methodologist. The remaining authors have no potential conflicts of interest to disclose., (Copyright ©The authors 2024. For reproduction rights and permissions contact permissions@ersnet.org.)

The integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S3 guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care., (© 2023. The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S‑3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care., (© 2023. The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S-3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients being treated in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care., Competing Interests: Die Autoren*innen haben keine im Zusammenhang mit dem vorliegenden Konsensuspapier bestehenden Interesssenskonflikte.Funktionen der Autoren*innen in den jeweiligen Fachgesellschaften und weitere Informationen befinden sich in der Online-Langversion.Dieser Beitrag beinhaltet keine von den Autoren durchgeführten Studien an Menschen oder Tieren. Alle Patienten, die über Bildmaterial oder anderweitige Angaben innerhalb des Manuskripts zu identifizieren sind, haben hierzu ihre schriftliche Einwilligung gegeben., (Thieme. All rights reserved.)

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S‑3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care., (© 2023. The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

Objectives: The Munich Breathlessness Service (MBS) significantly improved control of breathlessness measured by the Chronic Respiratory Questionnaire (CRQ) Mastery in a randomized controlled fast track trial with waitlist group design spanning 8 weeks in Germany. This study aimed to assess the within-trial cost-effectiveness of MBS from a societal perspective., Methods: Data included generic (5-level version of EQ-5D) health-related quality of life and disease-specific CRQ Mastery. Quality-adjusted life years (QALYs) were calculated based on 5-level version of EQ-5D utilities valued with German time trade-off. Direct medical costs and productivity loss were calculated based on standardized unit costs. Incremental cost-effectiveness ratios (ICER) and cost-effectiveness-acceptance curves were calculated using adjusted mean differences (AMD) in costs (gamma-distributed model) and both effect parameters (Gaussian-distributed model) and performing 1000 simultaneous bootstrap replications. Potential gender differences were investigated in stratified analyses., Results: Between March 2014 and April 2019, 183 eligible patients were enrolled. MBS intervention demonstrated significantly better effects regarding generic (AMD of QALY gains of 0.004, 95% confidence interval [CI] 0.0003 to 0.008) and disease-specific health-related quality of life at nonsignificantly higher costs (AMD of €605 [95% CI -1109 to 2550]). At the end of the intervention, the ICER was €152 433/QALY (95% CI -453 545 to 1 625 903) and €1548/CRQ Mastery point (95% CI -3093 to 10 168). Intervention costs were on average €357 (SD = 132). Gender-specific analyses displayed dominance for MBS in males and higher effects coupled with significantly higher costs in females., Conclusions: Our results show a high ICER for MBS. Considering dominance for MBS in males, implementing MBS on approval within the German health care system should be considered., (Copyright © 2022. Published by Elsevier Inc.)

The German Association of Palliative Care developed an evidence-based guideline about the management of malignant wounds in adult patients with incurable cancer. There is a lack of evidence-based guidelines about fungating wounds and a confusing wide range of available wound dressings. The goal of the guideline is to reduce the suffering of patients with malignant wounds and stabilize or improve their quality of life. The guideline is constructed following the German Instrument for Methodological Guideline Appraisal (DELBI): A systematic review was carried out for guidelines and reviews. A wound expert group discussed these research findings and suggested recommendations which were adapted and consented by representatives of 62 medical and health professionals associations.The guideline has 34 recommendations, thereof nine (26%) are evidence based with an evidence level from 2+ to 4 (according to SIGN). The assessment chapter comprises specific assessment tools for malignant wounds, odor and wound-related quality of life. Three recommendations address the psychosocial support of patients and their family caregivers and aim to reduce the impact of the wound on their emotional wellbeing, caregiver burden and social participation. The pain recommendations focus on a preventive atraumatic dressing change, positioning, systemic pain medication (anticipated, rescue and baseline) and local application of morphine or local anesthetics. The guideline gives recommendations on odor management (metronidazole, active coal and antiseptic dressings) and management of exudate (super absorber). The recommendations on prevention and management of bleeding (antifibrinolytica, haemostyptica) are vital for patients and caregivers. This guideline is one of the first evidence-based and consented guideline on malignant wound care and has the potential to improve the palliation of patients who suffer from there malignant wounds., (© 2022. The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

Background: The effectiveness of the Munich Breathlessness Service (MBS), integrating palliative care, respiratory medicine and physiotherapy, was tested in the BreathEase trial in patients with chronic breathlessness in advanced disease and their carers., Methods: BreathEase was a single-blinded randomised controlled fast-track trial. The MBS was attended for 5-6 weeks; the control group started the MBS after 8 weeks of standard care. Randomisation was stratified by cancer and the presence of a carer. Primary outcomes were patients' mastery of breathlessness (Chronic Respiratory Disease Questionnaire (CRQ) Mastery), quality of life (CRQ QoL), symptom burden (Integrated Palliative care Outcome Scale (IPOS)) and carer burden (Zarit Burden Interview (ZBI)). Intention-to-treat (ITT) analyses were conducted with hierarchical testing. Effectiveness was investigated by linear regression on change scores, adjusting for baseline scores and stratification variables. Missing values were handled with multiple imputation., Results: 92 patients were randomised to the intervention group and 91 patients were randomised to the control group. Before the follow-up assessment after 8 weeks (T1), 17 and five patients dropped out from the intervention and control groups, respectively. Significant improvements in CRQ Mastery of 0.367 (95% CI 0.065-0.669) and CRQ QoL of 0.226 (95% CI 0.012-0.440) score units at T1 in favour of the intervention group were seen in the ITT analyses (n=183), but not in IPOS. Exploratory testing showed nonsignificant improvements in ZBI., Conclusions: These findings demonstrate positive effects of the MBS in reducing burden caused by chronic breathlessness in advanced illness across a wide range of patients. Further evaluation in subgroups of patients and with a longitudinal perspective is needed., Competing Interests: Conflict of interest: M. Schunk reports grants from BMBF (German Federal Ministry of Education and Research), during the conduct of the study. Conflict of interest: L. Le has nothing to disclose. Conflict of interest: Z. Syunyaeva has nothing to disclose. Conflict of interest: B. Haberland has nothing to disclose. Conflict of interest: S. Tänzler has nothing to disclose. Conflict of interest: U. Mansmann has nothing to disclose. Conflict of interest: L. Schwarzkopf has nothing to disclose. Conflict of interest: H. Seidl has nothing to disclose. Conflict of interest: S. Streitwieser has nothing to disclose. Conflict of interest: M. Hofmann has nothing to disclose. Conflict of interest: T. Müller has nothing to disclose. Conflict of interest: T. Weiß has nothing to disclose. Conflict of interest: P. Morawietz has nothing to disclose. Conflict of interest: E.A. Rehfuess has nothing to disclose. Conflict of interest: R.M. Huber reports grants from BMBF (German Federal Ministry of Education and Research), during the conduct of the study. Conflict of interest: U. Berger reports grants from BMBF (German Federal Ministry of Education and Research), during the conduct of the study. Conflict of interest: C. Bausewein reports grants from BMBF (German Federal Ministry of Education and Research), during the conduct of the study., (Copyright ©The authors 2021. For reproduction rights and permissions contact permissions@ersnet.org.)

Background: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg's (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy)., Aim: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control., Design: Randomised controlled trial., Setting/participants: Informal caregivers of palliative in-patients., Methods: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock's Health Belief Model., Results: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial., Conclusion: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers' psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.

​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.)

Background: The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease., Aim: To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease., Design: A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale-symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches., Setting/participants: Breathless patients with advanced malignant and non-malignant disease., Results: A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14-67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach's alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met., Conclusion: Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness.

Background: In Germany, the annual mortality rate from cancer in the year 2011 was 269.9 deaths per 100 000 persons; every fourth death was due to cancer. A central objective of palliative care is to maintain the best possible quality of life for cancer patients right up to the end of their lives., Methods: The PubMed, Embase, and Cochrane Library databases were systematically searched for pertinent publications, and the ones that were selected were assessed as recommended by the Scottish Intercollegiate Guidelines Network. As part of the German Guideline Program in Oncology, recommendations for the S3 Guideline on Palliative Care concerning seven different topics in the management of adult patients with incurable cancer were developed by a representative expert panel employing a consensus process., Results: Opioids are the drugs of first choice for severe and moderately severe cancer-related pain, and for breathlessness. No clinically relevant respiratory depression was observed in any study. When opioids are used, accompanying medication to prevent constipation is recommended. Drugs other than opioids are ineffective against breathlessness, but clinical experience has shown that benzodiazepines and opioids can be used in combination in advanced stages of disease, or if the patient suffers from marked anxiety. Depression should be treated even in patients with a short life expectancy; psychotherapy is indicated, and antidepressant medication is indicated as well if depression is at least moderately severe. Communication skills, an essential component of palliative care, play a major role in conversations between the physician and the patient about the diagnosis, the prognosis, and the patient's wish to hasten death. When the dying phase begins, tumor-specific treatments should be stopped., Conclusion: Palliative care should be offered to cancer patients with incurable disease. Generalist and specialist palliative care constitute a central component of patient care, with the goal of achieving the best possible quality of life for the patient.

Background: Similar to pain, refractory breathlessness can occur episodically. Episodic Breathlessness is a distressing symptom in patients with advanced life-limiting disease. The lack of a universal definition impedes symptom understanding in clinical practice and effective management, respectively. The aim of the study was to formally consent a German translation of the English definition and terminology of episodic breathlessness., Methods: A web-based Delphi survey was conducted with German breathlessness experts (breathlessness working group of Germany's National Guideline (S3) for Palliative Care). Drafts of German-language definitions und terminology were assessed using structured questionnaires by binary rating or rankings, respectively. Optional comments were analysed by content analysis. Consensus was defined by ≥ 70% agreement among participants., Results: In two resulting Delphi-rounds 8/16 (50%) und 11/16 (69%) experts, 30-59 years of age, 50%/55% female, participated. After the second round, consensus was reached for the symptom's description "Atemnotattacke" (73%) and a German-language definition (90%). The terms "vorhersehbar" vs. "unvorhersehbar" were directly consented for the categorization (88%)., Conclusion: The formally consented German definition and terminology of episodic breathlessness enable clearer symptom understanding and provide a precise basis for education and research on the symptom and its management also in Germany. Effective management options are warranted to improve quality of life of suffering patients and their relatives., (© Georg Thieme Verlag KG Stuttgart · New York.)

Background: Health-care costs are growing, with little population-based data about people's priorities for end-of-life care, to guide service development and aid discussions., Aim: We examined variations in people's priorities for treatment, care and information across seven European countries., Design: Telephone survey of a random sample of households; we asked respondents their priorities if 'faced with a serious illness, like cancer, with limited time to live' and used multivariable logistic regressions to identify associated factors., Setting/participants: Members of the general public aged ≥ 16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain., Results: In total, 9344 individuals were interviewed. Most people chose 'improve quality of life for the time they had left', ranging from 57% (95% confidence interval: 55%-60%, Italy) to 81% (95% confidence interval: 79%-83%, Spain). Only 2% (95% confidence interval: 1%-3%, England) to 6% (95% confidence interval: 4%-7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%-17%, Spain) to 40% (95% confidence interval: 37%-43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities., Conclusions: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.

Background: The construct "meaning-in-life" (MiL) has recently raised the interest of clinicians working in psycho-oncology and end-of-life care and has become a topic of scientific investigation. Difficulties regarding the measurement of MiL are related to the various theoretical and conceptual approaches and its inter-individual variability. Therefore the "Schedule for Meaning in Life Evaluation" (SMiLE), an individualized instrument for the assessment of MiL, was developed. The aim of this study was to evaluate MiL in a representative sample of the German population., Methods: In the SMiLE, the respondents first indicate a minimum of three and maximum of seven areas which provide meaning to their life before rating their current level of importance and satisfaction of each area. Indices of total weighting (IoW, range 20-100), total satisfaction (IoS, range 0-100), and total weighted satisfaction (IoWS, range 0-100) are calculated., Results: In July 2005, 1,004 Germans were randomly selected and interviewed (inclusion rate, 85.3%). 3,521 areas of MiL were listed and assigned to 13 a-posteriori categories. The mean IoS was 81.9 +/- 15.1, the mean IoW was 84.6 +/- 11.9, and the mean IoWS was 82.9 +/- 14.8. In youth (16-19 y/o), "friends" were most important for MiL, in young adulthood (20-29 y/o) "partnership", in middle adulthood (30-39 y/o) "work", during retirement (60-69 y/o) "health" and "altruism", and in advanced age (70 y/o and more) "spirituality/religion" and "nature experience/animals"., Conclusion: This study is a first nationwide survey on individual MiL in a randomly selected, representative sample. The MiL areas of the age stages seem to correspond with Erikson's stages of psychosocial development.

The Palliative Care Outcome Scale (POS) is a multidimensional instrument covering physical, psychosocial, spiritual, organizational, and practical concerns. This study validated the German version of the POS and used the tool in different palliative care settings in Germany and Austria. Patients and staff were asked to complete the POS three times and evaluate the questionnaire and the translation afterwards. One hundred eighteen patients (44 male, 74 female, mean age 63 years, all suffering from advanced cancer) completed the POS one time, 55 patients two times, and 36 patients three times. Spearman's rho was highly significant for pain, other symptoms, anxiety, and life worthwhile in the first two assessments. The third assessment showed significant correlations for pain, other symptoms, anxiety, and family anxiety. Seventy-seven of 87 patients answered questions regarding the scale and the translation. All questions other than "Over the past 3 days, have you felt good about yourself?" were understandable for patients. Almost half of the staff was undecided whether the tool was reflecting the patients' condition. In contrast, the majority of patients liked it. Thus, the German version of the POS is well accepted by patients and staff and appears to be valid, although there are some areas where the scale would benefit from expansion to more closely capture staff and patient concerns.