Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODE^TM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODE^TM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODE^TM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying.

Background: Early integration of palliative care can improve outcomes for people with cancer and non-cancer diagnoses. However, prediction of survival for individuals is challenging, in particular in patients with haematological malignancies who are known to have limited access to palliative care. The ‘Surprise’-Question can be used to facilitate referral to palliative care. Aim: To explore experiences, views and perceptions of haemato-oncologists on the use of the ‘Surprise’-Question in the haemato-oncology outpatients clinics of a university hospital in Germany. Design: A qualitative study using individual semi-structured interviews transcribed verbatim and analysed thematically based on the framework approach. Setting/participants: The study took place at the haemato-oncology outpatient clinic and the bone marrow transplantation outpatient clinic of a university hospital. Nine haemato-oncologists participated in qualitative interviews. Results: Thematic analysis identified 4 themes and 11 subthemes: (1) meaning and relevance of the ‘Surprise’-Question; (2) feasibility; (3) the concept of ‘surprise’ and (4) personal aspects of prognostication. A key function of the ‘Surprise’-Question was to stimulate intuition and promote patient-centred goals of care by initiating a process of pause → reflection → change of perspective. It was easy and quick to use, but required time and communication skills to act on. Participants’ training in palliative care enhanced their willingness to use the ‘Surprise’-Question. Conclusion: Irrespective of its use in prognostication, the ‘Surprise’-Question is a valuable tool to facilitate consideration of patient-centred goals and promote holistic care in haemato-oncology. However, prognostic uncertainty, lack of time and communication skills are barriers for integration into daily practice. Further research should involve haematology patients to integrate their needs and preferences.

Background Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods Postbereavement survey by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i-CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patients’ last days of life. Results From 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate 54%). Approximately 94% reported the doctors treated their family member with dignity and respect “always” or “most of the time”; similar responses were given about nursing staff (94%). Additionally, 89% participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion This is the first study assessing quality of care for patients dying from cancer from the bereaved relatives’ perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. Clinical trial information: NCT03566732 Implications for Practice Previous studies have shown that bereaved relatives’ views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.

Purpose of review: The disease-related burden of patients with hematological malignancies is comparable with patients suffering from solid tumors. Palliative care offers relief from suffering independent of type of disease and prognosis. The prevalence of hematological malignancies is expected to increase in the next 20 years because of better therapeutic options with longer survival and because of the aging population. However, patients with hematological malignancies are underrepresented in palliative care as these diseases are associated with special care needs and prognostic uncertainty, which differ from the unambiguity of terminally ill patients with solid tumors. This review describes the recent studies and guidelines addressing the problems in palliative care for patients with hematological malignancies. Recent findings: Recent research covers prognostic uncertainty, challenges in terms of the acute death setting, and blood transfusions in the terminally ill as well as interdisciplinary collaboration. In addition to qualitative approaches exploring reasons for these challenges, criteria that indicate the approaching end of life in hematological malignancies were systematically developed and tested. Further, the effectiveness of palliative care addressing the hematopoietic stem cell transplantation setting was further analyzed. Summary: The patients’ perspective needs to be involved in future research to examine whether the connotation of ‘palliative care’ is a barrier for patients, families or healthcare professionals. Communication culture and skills have already been identified as goals for medical training. Further studies should identify the effective elements of palliative care specific for hematological malignancies and develop feasible support models, including informal caregivers.

Networking is a key feature of scientific success. The Tuberculosis Network European Trialsgroup (TBNET) was founded in 2006 as a non-profit, non-governmental peer-initiated scientific organization to collaboratively address research priorities in the area of tuberculosis in Europe. Today, TBNET is the largest tuberculosis research organization in Europe with nearly 500 members from 22 EU countries and 49 countries worldwide (www.tb-net.org). Apart from small multicenter basic research studies, a particular strength of TBNET is the performance of large collaborative projects, pan-European multicenter studies and database projects. In recent years, research from TBNET has substantially contributed to the understanding of the management, risk and prognosis of patients with multidrug (MDR) and extensively drug-resistant (XDR) tuberculosis and led to a better understanding of the clinical value of novel tests for the identification of adults and children with tuberculosis and latent infection with Mycobacterium tuberculosis. In 2009, two branches of TBNET were founded to specifically address tuberculosis in the pediatric population (ptbnet) and non-tuberculous mycobacterial diseases (NTM-NET). In addition to the research activities, TBNET is developing expert consensus documents for clinical management and provides training and capacity building especially for members from Eastern European countries, where tuberculosis is still a prevalent health problem.

Background: International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin.The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER).Methods: Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10).Results: Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = −.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low.Conclusion: The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research.Trial registration: This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).