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Background: Existing data on sedation at the end of life indicate challenges in the home care setting, leading to deviations from guidelines or non-provision of sedation., Aim: As part of the "SedPall" study, we aimed to explore circumstances in specialist palliative home care, which influence the practice of sedation., Design: Semi-structured qualitative interviews ( n  = 59) and two focus groups ( n  = 4, n  = 5). Recruitment took place via contact persons. We thematically analyzed the transcripts with the Framework Approach, using MAXQDA 2018.2., Setting/participants: Physicians, nurses, and other members of the multiprofessional team from 10 palliative care units and seven home care teams., Results: Participants reported home care specific circumstances that can be categorized into three interrelated topics. (1) Lack of 24/7 on-site availability, (2) active involvement of the family, (3) challenges regarding teamwork and multidisciplinarity. Participants drew different conclusions from the reported circumstances regarding the feasibility of different types of sedation at home: While some reported to generally use all types of sedation, others stated that some types of sedation are not feasible in home care, for example deep sedation until death. Most participants questioned the applicability of existing sedation guidelines in the home care setting., Conclusion: Our data indicate that sedation practices might currently follow the healthcare professional's attitude or service policy rather than the patient's need. To avoid hospital admission in manageable cases and ensure that home care specific best practice standards are met, existing guideline recommendations have to be adapted and supplemented by additional supporting measures specific for the home care setting.

Objective: The care of seriously ill and dying people is an important task, especially in times of pandemics and regardless of the patients' infection status. Before the SARS-CoV-2 pandemic, healthcare systems were not sufficiently prepared for the challenges of palliative and end-of-life care during a pandemic. The aim was to identify and synthesize relevant aspects and non-therapeutic recommendations of palliative and end-of-life care of seriously ill and dying people, infected and uninfected, and their relatives after one year into the pandemic to outline what actions, practices, and procedures were taken to deal with the pandemic and its consequences., Method: A scoping literature review following the methods of the PRISMA-ScR. The electronic literature search was conducted in 09/2020 and updated in 02/2021 using MEDLINE (Pubmed), with no restriction of publication date and eligibility criteria. In addition, a manual search was carried out., Results: A total of 280 studies met the inclusion criteria and three main aspects have emerged. The reduction of physical contact due to the risk of infection severely limited the work of palliative care professionals and solutions had to be found to maintain palliative and end-of-life care structures. This has been accompanied by strict visitor restrictions and the need to support patients, relatives, and enable contact. The third relevant aspect is the integration of specialist palliative care expertise into other clinical settings., Significance of Results: This scoping review demonstrates the need for basic palliative care training for every healthcare professional. It supports the importance of developing a national strategy for palliative care in pandemic times in every country, including the digitalization of the healthcare sector to offer telecommunication/telemedicine.

Objectives: Sedatives are frequently used at the end of life in specialist palliative care. There is scarce information about their use in nursing homes. Therefore, we aimed to assess the use of (1) sedatives generally and (2) 'sedatives with continuous effect', based on objective operational criteria, within the last week of life in a nursing home., Methods: This was a retrospective cohort study of residents who died in a German nursing home between 1/2015 and 12/2017, using the nursing home's medical records, which contained drug sheets and nurses' notes. Sedatives analysed were those recommended by guidelines for 'palliative sedation': benzodiazepines, levomepromazine, haloperidol (≥5 mg/day) and propofol. Exploratory statistical analysis was conducted using R V.3.6.1., Results: 46/165 (28%) deceased residents received a sedative during the last week of life, all without use of the term 'sedation'. 26/165 residents (16%) received 'sedatives with continuous effect', for median 4 days (range 1-7). Oral lorazepam was used most frequently, mainly for agitation, anxiety and dyspnoea, but also due to palliative status and patients wish. The median total daily dose of lorazepam within the last week of life was 1.5 mg (range 0.5-7.5). The term 'palliative' was significantly more often used for residents receiving sedatives (p=0.001)., Conclusions: Compared with published data on continuous deep sedation, moderate or deep sedation was less frequent in this nursing home and never labelled as 'sedation'. Multicentre mixed-methods research is needed to gain representative and more detailed data on sedation practices at the end of life in nursing homes., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

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: Data on sedation at the end of life (eol) in different medical disciplines are scarce and mostly based on subjective reports. We aimed to assess the use of sedatives with continuous effect in the last week of life and associated factors in different hospital departments, with the aid of objectifiable criteria., Methods: We conducted a retrospective cohort study based on the medical records of patients who died in one of five clinical departments of German hospitals between January 2015 and December 2017 (hematology/oncology [two different departments], neurology, geriatrics, and gynecology). The use of sedatives that are recommended in guidelines for palliative sedation was analyzed, irrespective of indication and treatment intent, with the aid of published definitions of continuous effect and of at least moderately sedating doses. The analysis consisted of descriptive statistics and multivariate logistic regression analysis., Results: 260/517 (50%) of the patients who died were given sedatives with continuous effect in the last week of life, 53/517 (10%) in at least moderately sedating doses. For 76/260 (29%) patients, no indication was noted. The term "sedation" was used in the medical records of 20/260 (8%) patients. The use of sedatives with continuous effect was significantly associated with the department in which the patient was treated (hematology/oncology II: OR 0.32, 95% CI [0.16: 0.63]; geriatrics: OR 0.23, 95% CI [0.10:0.50]; reference, hematology/oncology I)., Conclusion: It was not possible to draw a clear distinction between the use of sedatives for symptom control, without sedating effect or intent to sedate, and intentional sedation to relieve suffering. The observed differences between hospital departments and deviations from recommended practice, e.g. lack of documentation of the indication, warrant further exploration. Moreover, context-specific supportive measures for the use of sedatives and sedation at the end of life should be developed.

Background: Terminology concerning sedation in palliative care is heterogeneous, vague, and difficult to apply with negative impact on the reliability of quantitative data, practice, and ethical discourse. Design: To clarify the concept, we systematically developed definitions of core terms in an interdisciplinary research group comprising palliative care, ethics, law, and philosophy, integrating feedback from external experts. Results: We define terms stepwise, separating matters of terminology (What is the practice?) from matters of good practice (How to use it?). We start with an operational definition of "reduced level of consciousness" (score < 0 on the Richmond Agitation-Sedation Scale modified for palliative care inpatients (RASS-PAL), followed by defining "sedating," "sedation," and "intentional sedation" as the result or process of sedating a patient as a means of achieving a previously defined treatment goal and the terms "light," "deep," "temporary," and "sedation until death." Conclusion: The terminology facilitates the precise phrasing of aims, indications, and rules for good practice. Empirical research on acceptance and feasibility is needed.

Context: Sedation is an accepted, but controversially discussed and challenging measure to treat suffering at the end of life. Although most people die in hospitals or nursing homes, little is known how professionals in these settings deal with sedatives and sedation at the end of life., Objectives: To explore 1) challenges regarding use of sedatives and sedation at the end of life in hospitals and nursing homes, and 2) strategies, and supportive measures to meet these challenges, as perceived by nurses and physicians., Methods: Multicenter qualitative interview study. Forty-nine participants: 12 general practitioners and 12 nurses from five nursing homes, 12 physicians, and 13 nurses from five hospital departments (hematology/oncology (n = 2), neurology, geriatrics, gynecology). Semi-structured qualitative interviews. Data analysis guided by framework approach., Results: Perceived challenges relate to three levels of the care situation: individual, interaction with others, and work environment. The main challenge was defining the adequate timing and/or dose. Other challenges, e.g., disagreements regarding indication or legal uncertainties, were highly interrelated, and strongly associated with this major challenge. Reported strategies and supportive measures to address challenges also corresponded to the three interrelated levels. Major named strategies were education and training, joint decision-making within the team and regular discussion with the patient and family. On the level work environment, no implemented strategies, but wishes for change were identified., Conclusion: To meet the identified challenges in a sustainable way and enable continuous improvement of quality of care, best practice recommendations, and other supportive measures have to address all identified levels of challenges., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: During the SARS-CoV2 pandemic, protection measures, as well as visiting restrictions, had a severe impact on seriously ill and dying patients and their relatives. The study aims to describe the experiences of bereaved relatives of patients who died during the SARS-CoV2 pandemic, regardless of whether patients were infected with SARS-CoV2 or not. As part of this, experiences related to patients' end-of-life care, saying goodbye, visiting restrictions and communication with the healthcare team were assessed., Methods: An open observational post-bereavement online survey with free text options was conducted with 81 bereaved relatives from people who died during the pandemic in Germany, with and without SARS-CoV2 diagnosis., Results: 67/81 of the bereaved relatives were female, with a mean age of 57.2 years. 50/81 decedents were women, with a mean age of 82.4 years. The main underlying diseases causing death were cardiovascular diseases or cancer. Only 7/81 of the patients were infected with SARS-CoV2. 58/81 of the relatives felt burdened by the visiting restrictions and 60/81 suffered from pandemic-related stress. 10 of the patients died alone due to visiting restrictions. The burden for relatives in the hospital setting was higher compared to relatives of patients who died at home. 45/81 and 44/81 relatives respectively reported that physicians and nurses had time to discuss the patient's condition. Nevertheless, relatives reported a lack of proactive communication from the healthcare professionals., Conclusions: Visits of relatives play a major role in the care of the dying and have an impact on the bereavement of relatives. Visits must be facilitated, allowing physical contact. Additionally, virtual contact with the patients and open, empathetic communication on the part of healthcare professionals is needed., Trial Registration: German Clinical Trials Register (DRKS00023552)., (© 2021. The Author(s).)

Background: Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we aimed to explore the concept of 'sedative drugs' and the intentions of German healthcare professionals in general palliative care when administering sedative drugs at the end of life., Methods: Semi-structured qualitative interviews with physicians and nurses (n = 49). Recruitment took place via contact persons in five hospital departments (haematology/oncology (n = 2), neurology, geriatrics, gynaecology) and five nursing homes. We thematically analysed the transcripts by the Framework approach, using MAXQDA version 2018.2., Results: Most interviewees referred to benzodiazepines, opioids, and antipsychotics. Some subsumed all into sedative drugs, others differentiated between sedative drugs, anxiolytics, and analgesics. In explaining their intention, interviewees particularly emphasized what they want to avoid when administering sedative drugs. We identified three main themes regarding (excluded) intentions: (1) use of sedative drugs to relieve the patient's suffering with reduction of consciousness as side effect, (2) use of sedative drugs to relieve the situation for the team and/or the family, (3) distinction between intention and expectation regarding hastening death. Interviewees often equated the term 'sedation' with inducing a state of unconsciousness, which should be avoided., Conclusion: German healthcare professionals in general palliative care seem to negatively connote the term 'sedation'. Moreover, they see themselves in a more passive role by accepting a side effect rather than performing an intentional act. Critical reflection of indications and intentions in accordance with respective guidelines is needed., (© 2021. The Author(s).)

Background: The SARS-CoV-2 (COVID-19) pandemic is posing major challenges for health care systems. In Germany, one such challenge has been that adequate palliative care for the severely ill and dying (with and without COVID-19), as well as their loved ones, has not been available at all times and in all settings., the pandemic has underlined the significance of the contribution of general practitioners (GPs) to the care of severely ill and dying patients., Objectives: To describe GPs' experiences, challenges and perspectives with respect to end-of-life care during the first peak of the pandemic (spring 2020) in Germany., Materials and Methods: In November and December 2020, a link to an Unipark online survey was sent to GPs registered on nationwide distribution lists., Results: In total, 410 GPs responded; 61.5% indicated that the quality of their patients' end-of-life care was maintained throughout the pandemic, 36.8% reported a decrease in quality compared to pre-pandemic times. Of the GPs who made home visits to severely ill and dying patients, 61.4% reported a stable number of visits, 28.5% reported fewer visits. 62.7% of the GPs reported increased telephone contact and reduced personal contact with patients; 36.1% offered video consultations in lieu of face-to-face contact. The GPs reported that relatives were restricted (48.5%) or prohibited from visiting (33.4%) patients in nursing homes. They observed a fear of loneliness among patients in nursing homes (91.9%), private homes (87.3%) and hospitals (86.1%)., Conclusions: The present work provides insights into the pandemic management of GPs and supports the development of a national strategy for palliative care during a pandemic. To effectively address end-of-life care, GPs and palliative care specialists should be involved in COVID-19 task forces on micro, meso and macro levels of health care., Competing Interests: The authors have declared that no competing interests exist.

Objectives: There is scarce information about sedation in nursing homes at the end of life. We aimed to assess (1) the use of sedatives generally and "sedatives with continuous effect," based on objective operational criteria, within the last week of life in nursing homes and (2) factors associated with this treatment., Design: Retrospective cohort study, using the nursing homes' medical records., Setting and Participants: Residents who died in 4 German nursing homes from January 2015 to December 2017 and whose medical records were available (n = 512)., Methods: Sedatives analyzed were those recommended by guidelines for "palliative sedation": benzodiazepines, levomepromazine, haloperidol (≥5 mg/d), and propofol. The definition of "sedatives with continuous effect" and doses judged as at least moderately sedating were consented by palliative care clinicians and pharmacists, based on the literature. Descriptive statistics and multivariate logistic regression analysis were performed (R version 3.6.1)., Results: Overall, 110/512 (21%) deceased residents received a sedative at least once during the last week of life, 46/512 (9%) "sedatives with continuous effect." Oral lorazepam was used most frequently. Eleven of 512 (2%) residents received doses judged as at least moderately sedating. The term sedation was not used. Most frequent indications were agitation (58/110; 53%) and anxiety (35/110; 32%); no indication was noted for 36/110 (33%) residents. The resident's involvement in the decision for sedatives was documented in 3/110 (3%). Multivariate logistic regression analysis showed significant associations between use of sedatives and age (OR = 0.94, P < .001) as well as institution (P < .001)., Conclusions and Implications: Our data indicate a lower prevalence of sedation compared to international data and considerable differences regarding prevalence between institutions. These differences, potential setting-specific challenges, and need for support measures for consistent best practice of sedation in nursing homes should be further explored., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have been conducted to evaluate clinical ethics support services near the end of life., Methods: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241., Ethical Considerations: Ethical approval is not needed as it is a systematic review of published literature., Results: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results., Conclusion: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services.

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: Cancer care including aggressive treatment procedures during the last phase of life in patients with incurable cancer has increasingly come under scrutiny, while integrating specialist palliative care at an early stage is regarded as indication for high quality end-of-life patient care., Aim: To describe the demographic and clinical characteristics and the medical care provided at the end of life of cancer patients who died in a German university hospital., Methods: Retrospective cross-sectional study on the basis of anonymized hospital data for cancer patients who died in the Munich University Hospital in 2014. Descriptive analysis and multivariate logistic regression analyses for factors influencing the administration of aggressive treatment procedures at the end of life., Results: Overall, 532 cancer patients died. Mean age was 66.8 years, 58.5% were men. 110/532 (20.7%) decedents had hematologic malignancies and 422/532 (79.3%) a solid tumor. Patients underwent the following medical interventions in the last 7/30 days: chemotherapy (7.7%/38.3%), radiotherapy (2.6%/6.4%), resuscitation (8.5%/10.5%), surgery (15.2%/31.0%), renal replacement therapy (12.0%/16.9%), blood transfusions (21.2%/39.5%), CT scan (33.8%/60.9%). In comparison to patients with solid tumors, patients with hematologic malignancies were more likely to die in intensive care (25.4% vs. 49.1%; p = 0.001), and were also more likely to receive blood transfusions (OR 2.21; 95% CI, 1.36 to 3.58; p = 0.001) and renal replacement therapy (OR 2.65; 95% CI, 1.49 to 4.70; p = 0.001) in the last 7 days of life. Contact with the hospital palliative care team had been initiated in 161/532 patients (30.3%). In 87/161 cases (54.0%), the contact was initiated within the last week of the patient's life., Conclusions: Overambitious treatments are still reality at the end of life in cancer patients in hospital but patients with solid tumors and hematologic malignancies have to be differentiated. More efforts are necessary for the timely inclusion of specialist palliative care.

Background | In Germany, place of death is recorded on death certificates, but is not analyzed further. In consequence, only little is known about the place of death among cancer patients at the population level. The aim of the study was to describe the changes of places of death in cancer patients over a time period of 10 years. Material and methods | This study examined death certificates from 2001 and 2011 of selected regions of Westphalia-Lippe (Germany). Cancer patients were identified on the basis of cause of death. Description of frequencies of place of death and subgroup analyses by tumor entity (ICD-10, C00-C96) were performed. Results | A total of 24 009 death certificates were analyzed (2001: 11,585; 2011: 12,424). Cancer was the underlying or contributory cause of death in 34.0%. For the years 2001 and 2011, respectively, the following distributions of place of death were observed: home, 24.1% vs. 24.7% (p=0.553); hospital, 62.8% vs. 51.4% (p=0.001); palliative care unit, 0.0% vs. 2.2%; hospice, 5.5% vs. 12.5% (p=0.001); nursing home, 7.4% vs. 10.9% (p=0.001); other, 0.1% vs. 0.3% (p=0.063); no data, 0.1% vs. 0.3% (p=0.015). Patients with brain tumours had a higher probability of dying in a hospice (2011: female 23.5%; male 27.7%). A higher risk of death in hospital was observed among cancer patients with an underlying hematological malignancy (2011: female 63.7%; male 68.4%). Conclusion | Cancer patients mainly die in institutions, with hospitals being the most frequent location. Only one in four deaths occurs in the home setting. The trend over time shows a shift in place of death away from hospitals towards hospices, palliative care units, and nursing homes., (© Georg Thieme Verlag KG Stuttgart · New York.)

Background: Because of demographic changes of an aging society, palliative care is becoming increasingly important. It is therefore necessary to evaluate preferences at the end of life at an early stage to meet the needs and requests of future patients., Objectives: The aim of this study was to find out preferences in a theoretical scenario ("If you developed a serious medical condition such as cancer and you had less than a year to live…") regarding the desired involvement in decision-making at the end of life and the preferred place of death., Materials and Methods: As part of the international PRISMA project, a representative telephone survey was carried out in Germany., Results: A total of 1,363 Germans took part in the survey (response rate 29.0 %, 47.1 ± 15.7 years, 42 % male). 90.8 % wanted to make their own decisions with regard to end-of-life care, which was most important for people with higher education. 83.3 % wanted to predetermine decisions by means of an advance directive in case they are no longer able to make them at the time. This was again more important for individuals with higher education and for older subjects (≥ 65 years). The preferred place of death was their own home (63.3 %), and the least preferred place for death was in hospital in 48.2 %. In particular, women did not want to die in a hospital., Conclusion: These results should be considered when planning health care structures to meet the wishes of people at the end of their life, in particular to strengthen the importance of patient provision and the desire for their own home to be the preferred place to die.

Background: Care homes are increasingly becoming places where people spend the final stages of their lives and eventually die. This trend is expected to continue due to population ageing, yet little is known about public preferences regarding this setting. As part of a larger study examining preferences and priorities for end of life care, we investigated the extent to which care homes are chosen as the least preferred place of death, and the factors associated with this negative preference., Methods: We conducted a cross-sectional telephone survey among 9,344 adults from random private households in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We asked participants where they would least prefer to die in a situation of serious illness with less than one year to live. Multivariate binary logistic regressions were used to identify factors associated with choosing care homes as the least preferred place of death in each country., Results: Care homes were the most frequently mentioned least preferred place of death in the Netherlands (41.5%), Italy and Spain (both 36.7%) and the second most frequent in England (28.0%), Portugal (25.8%), Germany (23.7%) and Flanders (18.9%). Only two factors had a similar and significant effect on the least preferred place of death in more than one country. In Germany and the Netherlands those doing housework were less likely to choose care homes as their least preferred place (AOR 0.72; 95% CI:0.54-0.96 and AOR 0.68; 95% CI:0.52-0.90 respectively), while those born in the country where the survey took place were more likely to choose care homes (AOR 1.77; 95% CI:1.05-2.99 and AOR 1.74; 95% CI:1.03-2.95 respectively). Experiences of serious illness, death and dying were not associated with the preference., Conclusions: Our results suggest it might be difficult to promote care homes as a good place to die. This is an urgent research area in order to meet needs and preferences of a growing number of older people with chronic, debilitating conditions across Europe. From a research perspective and in order to allow people to be cared for and die where they wish, our findings highlight the need to build more in depth evidence on reasons underlying this negative preference.

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness., Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, The Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes., Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support., Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery., (© The Author 2013. Published by Oxford University Press on behalf of the European Public Health Association.)

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.

Context: A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity., Objectives: To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points., Methods: An international expert "workshop" was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments., Results: There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline., Conclusion: Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand., Aim: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors., Design: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain., Results: Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93-2.77), (odds ratio = 1.33-1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14-1.41), (odds ratio = 1.30, 95% confidence interval = 1.20-1.42)); younger-middle age ((30-59 years: odds ratio = 1.24-1.40), (50-59 years: odds ratio = 1.23, 95% confidence interval = 1.04-1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49-1.58), (odds ratio = 1.35-1.53)). Those with increased financial hardship (odds ratio = 0.64-0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60-0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54-0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18-1.53)., Conclusions: Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.

Background: Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this., Methods: Telephone survey with 9,344 individuals aged ≥16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As 'burden to others' showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression., Results: Overall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80)., Conclusions: When imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.

Context: Although episodic breathlessness (EB) is reported to be highly prevalent in advanced disease, our understanding about it is limited., Objectives: The aim of this study was to systematically review and synthesize the evidence on EB regarding definition, characteristics, and patients' experiences., Methods: Systematic review using searches in six databases, hand search, and personal contacts with authors in the field. Search terms included the combination of "episodic" and "breathlessness" (and synonyms) with five different diseases. Selection criteria included patients with advanced disease and information about EB based on original research. All retrieved studies were reviewed by two independent investigators., Results: Twenty-seven studies (of 7584) were included in this review. Only eight studies explored EB as a primary outcome. EB is poorly defined. It is characterized by high prevalence (81%-85%), high frequency (daily), short duration (often less than 10 minutes), and severe peak intensity. EB either develops without any known trigger or is triggered by physical exertion, emotions, or environmental influences., Conclusion: EB is a common symptom in patients with advanced disease, but information about characteristics and experiences is limited. As there is no common terminology, an agreed definition is needed to foster research to develop effective treatments for EB., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Aim: To evaluate the views of clinicians and researchers on their use of outcome measures and which questions are most important in palliative and end-of-life care., Methods: Online survey of professionals working in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS)., Results: The overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians., Conclusions: In palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs).

Context: Culture has a profound influence on our understanding of what is appropriate care for patients at the end of life (EoL), but the evidence base is largely nonexistent., Objectives: An international workshop was organized to compile a research agenda for cultural issues in EoL research, and assess challenges and implications of the integration of the culture concept in different contexts., Methods: Participant experts were identified from the expert network established through an Internet-based call for expertise on culture and EoL care and from meetings. The workshop comprised presentations of research priorities from country and disciplinary perspectives, and group discussions. Analysis used all data gathered in the workshop and applied standard qualitative techniques., Results: Thirty experts participated in the workshop and identified the following priorities for cross-cultural research: 1) clarifying the concepts of culture and cultural competence; 2) defining EoL in a context of social and cultural diversity, with a focus on concepts of EoL care and bioethics, experiences of receiving and giving EoL care, and care practices in different settings; and 3) developing appropriate methodologies and outcome measurements that address diversity., Conclusion: This first pan-European meeting compiled a research agenda, identifying key areas for future research focusing on culture, diversity, and their operationalization. This requires international and multidisciplinary collaboration, which is necessary in the current efforts to synthesize best practices in EoL care., (Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Purpose: Patient-reported outcome measurement (PROM) plays an increasing role in palliative and end-of-life (EOL) care but their use in EOL care and research remains varied and inconsistent. We aimed to facilitate pan-European collaboration to improve PROMs in palliative and EOL care and research., Methods: The study includes a workshop with experts experienced in using PROMs in clinical care and research from Europe, North America, and Africa. Information from presentations, and plenary and group discussions was analysed using content analysis for extracting the main themes., Results: Thirty-two professionals from 15 countries and eight different professional backgrounds participated in the workshop. The discussion identified: 1) the need for standardisation with improvement of existing PROMs, e.g., with a modular system and an optional item pool; 2) the aspects of further development with a multi-professional approach taking into account cultural sensitivity especially for translated versions; and 3) the need for guidance, training, and resources. An international network for sharing concepts, experiences, and solutions could enhance these steps of further development., Conclusion: PROMs must be based on rigorous scientific methods and respond to patient complexity. Coordinated pan-European collaboration including researchers and clinicians is required to develop and attain quality care and systematic research in outcome measurement in palliative and EOL care.

Background: To date, there is no coordinated strategy for end-of-life (EOL) cancer care research in Europe. The PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care) project is aiming to develop a programme integrating research and measurement in EOL care. This survey aimed to map and describe present EOL cancer care research in Europe and to identify priorities and barriers., Material and Methods: A questionnaire of 62 questions was developed and 201 researchers in 41 European countries were invited to complete it online in May 2009. An open invitation to participate was posted on the internet., Results: Invited contacts in 36 countries sent 127 replies; eight additional responses came through websites. A total of 127 responses were eligible for analysis. Respondents were 69 male and 58 female, mean age 49 (28-74) years; 85% of the scientific team leaders were physicians. Seventy-one of 127 research groups were located in a teaching hospital or cancer centre. Forty-five percent of the groups had only one to five members and 28% six to ten members. Sixty-three of 92 groups reported specific funding for EOL care research. Seventy-five percent of the groups had published papers in journals with impact factor ≤ 5 in the last 3 years; 8% had published in journals with impact factor >10. Forty-four out of 90 groups reported at least one completed Ph.D. in the last 3 years. The most frequently reported active research areas were pain, assessment and measurement tools, and last days of life and quality of death. Very similar areas--last days of life and quality of death, pain, fatigue and cachexia, and assessment and measurement tools--were ranked as the most important research priorities. The most important research barriers were lack of funding, lack of time, and insufficient knowledge/expertise., Conclusions: Most research groups in EOL care are small. The few large groups (14%) had almost half of the reported publications, and more than half of the current Ph.D. students. There is a lack of a common strategy and coordination in EOL cancer care research and a great need for international collaboration.

Context: As the European population ages and the number of cancer deaths annually increases, there is an urgent requirement to provide high-quality, effective care. The measurement of outcomes in advanced disease is complex, and to conduct comparative research and meta-analyses, appropriate tool selection is essential., Objectives: This study aimed to identify the outcome tools currently in use in end-of-life care (both clinically and for research) across Europe and investigate the preferred features of outcome tools from the perspective of those who select and apply them., Methods: A pan-European Internet-based survey of tool users was conducted in research and clinical populations. Respondents were asked to identify the tools they are using and describe ideal features of the measures. The study was conducted in accordance with guidance for best practice in web-based research., Results: Of the 311 participants who completed a survey, 99 tools in clinical care and audit, and 94 in research, were cited by less than 10 participants. Further data revealed that respondents require the number of potential tools to be rationalized and that brief tools are favored., Conclusion: The selection of valid and appropriate tools for palliative care populations requires expert guidance and support to ensure that clinicians and researchers are collecting data that have validity and potential for comparison within and between populations and countries., (Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that cross-national understandings of EoLC remain unknown., Purpose: To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey., Methods: An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC., Results: Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios., Conclusion: Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe.

Pain and breathlessness are common symptoms in advanced disease. Pain should be treated with a combination of non-opioids and opioids. Coanalgesics play an important role in the treatment of neuropathic pain. Side-effects of opioids should be treated prophylactically but can make opioid rotation necessary. Management of breathlessness needs a combination of non-pharmacological and pharmacological measures. Fans and rollators showed to be effective in relieving breathlessness. Opioids are the drugs of choice for breathlessness. The efficacy of benzodiazepines could not be confirmed, they should only be used as second line therapy. Also, oxygen should only be given regularly after an individual test.

Breathlessness is a common and distressing symptom in advanced cancer. Management comprises non-pharmacological and pharmacological interventions, which are best combined. There is some evidence mainly derived from COPD studies for walking aids, neuro-muscular electrical stimulation, fan and breathlessness services. Opioids are the drugs of choice for pharmacological management of breathlessness. There is currently not enough evidence to support the routine use of benzodiazepines, other anxiolytics, antidepressants, phenothiazines, inhaled furosemide and oxygen.

Background and Objective: In the last few years public interest in the care of severely ill and dying patients has been growing. The aim of palliative medicine is to improve the care of the dying. However, this is still not achieved in many general hospitals. The Liverpool Care Pathway (LCP) for the care of the dying intends to change this situation. The aim of this study was to explore the views of professionals using the LCP as a framework for ensuring good care of the dying., Methods: A qualitative study was conducted with an interdisciplinary focus group of ten professionals (nurses, physicians, spiritual adviser, social worker, physiotherapist and art therapist) to explore their views and experience after implementation of the LCP in a palliative care unit (PCU). The recorded discussion between them was transcribed verbatim and analysed using content analysis by three independent reviewers., Results: Seven nurses and three physicians with an average work experience of 16 years each took part in the focus group. Based on the experience of 24 patients, the LCP was evaluated as very positive by all participants. In particular, three aspects were emphasized as having high relevance for a good quality of care: improvement of self-confidence, better control of symptoms, and enhancement of the communication between professionals and with patients and their relatives. However, some weaknesses were also mentioned, e.g. inadequate effort of documenting the beginning of implementing the scheme., Conclusion: The LCP was well received by professionals after the initial implementation of the LCP in a German PCU. The LCP was judged as an appropriate and helpful framework in the care of the dying.

Palliative care should be part of respiratory medicine for two reasons: first, many respiratory diseases--besides thoracic tumours--need palliative care in the late stages of the disease. Second, dyspnoea is a common symptom in advanced, primary extrapulmonary diseases and the knowledge of respiratory specialists can be beneficial in the treatment of this symptom. In this paper we describe frequent symptoms of advanced pulmonary diseases and their treatment. Moreover, we focus on the structure of palliative care in Germany.

Objectives: European populations are ageing, but data on the associated end-of-life care needs are scarce. This study aimed to analyse population, mortality and place of death (PoD) trends in Germany since 1950, and to project mortality by PoD until 2050. Study design and methods: Secondary analysis of national statistics on population, mortality and PoD by age and gender. Future numbers and proportions of deaths by PoD -- hospital deaths (HDs) and non-hospital deaths (NHDs) - were based on recent trends (2005-2009). Linear models accounted for the effect of age and gender. Results: The German population increased by 19.0% between 1950 and 2002, and has remained relatively stable ever since. However, it is expected that it will decrease (15.4%) from 2009 to 2050 (from 81.8 to 69.4 million). The annual number of deaths has shown an increasing trend, except for a decrease in 1975-2004. A 26.0% increase is expected from 2009 to 2050 (854,544 to 1,077,000 deaths). Older people (age > 75 years) will account for 87.8% of all deaths in 2050 (64.4% in 2009). The proportion of HDs was stable, with an annual mean of 47.0% (range 44.9-47.8%). The models estimated that most people will continue to die outside of hospital in 2050 (48.6 or 54.1%), and absolute numbers of both HDs and NHDs will increase from 2009 to 2050 [HD: by 20.1 million (30.6%); NHD: by 35.5 million (17.0%)]. Conclusions: Unlike in other industrialized countries, most people in Germany die outside of hospital. The need to plan for growing end-of-life care needs and ageing is urgent in Germany but also applies to the rest of Europe. A joint European policy must inform national strategies. [ABSTRACT FROM AUTHOR]