Background One challenge in caring for cancer patients with incurable disease is the adequate identification of those in need for specialized palliative care (SPC). The study’s aim was to validate an easy to use phenomenological screening tool. Methods The German tool is based on the National Comprehensive Cancer Network (NCCN) Palliative Care guidelines and contains ten items in five domains that focus e.g. on diagnosis, functional status, complications, comorbidities, and palliative care relevant problems such as symptom management, distress, and support of family and team members. Sum score ranges from 0 to 14 (no need to great need). Assessment to identify SPC needs was done in university hospital wards between 1 and 08/2017 by health care professionals on admission of the patient if the disease was incurable and expected prognosis < 12 months. The Integrated Palliative Outcome Scale (IPOS, staff version), an outcome assessment instrument for palliative care that consists of ten items, served as external criterion; in sub samples inter-rater/test-retest were performed. Results Data from 208 patients with incurable disease and life expectancy < 12 months (54.8% female; average age 63.5 years, range 21–96) were assessed using the tool. The tool has good convergent validity; the correlation between the sum scores of IPOS and our tool showed a significant and substantial effect. The sum score was independent of the patient’s age, gender and primary diagnosis. Patients who already were in contact with SPC had significantly higher screening scores than patients without. With a cut point of  ≥ 5, 80.8% of the screened patients were in need for SPC. Cronbach’s alpha was α = .600. Rater agreement (inter-rater, test-retest) varied between single items. Correlation coefficients showed significant substantial effects. Conclusions This is the first validation of a screening procedure in German language identifying SPC needs of adult patients with advanced cancer and the first using filter questions as a pre-screening. Proxy assessment of SPC needs by physicians in cancer care settings is feasible and the suggested tool presents a valid instrument to trigger a PC consultation. Trial registration The study was not registered.

The global COVID-19 pandemic has led to drastic changes in the management of patients with rheumatic diseases. Due to the imminent risk of infection, monitoring intervals of rheumatic patients have prolonged. The aim of this study is to present insights from patients, rheumatologists, and digital product developers on the ongoing digital health transition in rheumatology. A qualitative and participatory semi-structured fishbowl approach was conducted to gain detailed insights from a total of 476 participants. The main findings show that digital health and remote care are generally welcomed by the participants. Five key themes emerged from the qualitative content analysis: (1) digital rheumatology use cases, (2) user descriptions, (3) adaptation to different environments of rheumatology care, and (4) potentials of and (5) barriers to digital rheumatology implementation. Codes were scaled by positive and negative ratings as well as on micro, meso, and macro levels. A main recommendation resulting from the insights is that both patients and rheumatologists need more information and education to successfully implement digital health tools into clinical routine.

Purpose Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care. Methods The “Care of the Dying Evaluation” (CODE ™ ) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin, allocating values between 0 (low quality) and 4 (high quality). The total score (0–104) is divided into subscales which indicate support/time given by doctors/nurses, spiritual/emotional support, information/decision-making, environment, information about the dying process, symptoms, and support at the actual time of death/afterwards. Next-of-kin of patients with an expected death in specialized palliative care units and other wards in two university hospitals between April 2016 and March 2017 were included. Results Most of the 237 analyzed CODE-GER questionnaires were completed by the patient’s spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3–276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25–104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process. Conclusion The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed. Trial registration DRKS00013916 Electronic supplementary material The online version of this article (10.1007/s00520-020-05465-2) contains supplementary material, which is available to authorized users.

Zusammenfassung Hintergrund und Ziel Im föderalen Deutschland sind Krisenstäbe zentrale Instrumente der Pandemiebewältigung. Das Ziel dieses Artikels ist es, Strukturen und Befugnisse von COVID-19-Pandemiekrisenstäben zu beschreiben, die während einer Studie zur Versorgung Schwerkranker und Sterbender in Pandemiezeiten (PallPan) exploriert wurden. Der Schwerpunkt liegt auf gesundheitsbezogenen Krisenstäben von Bund und Ländern (Makroebene), von Landkreisen, kreisfreien Städten und Kommunen (Mesoebene) sowie auf den Krisenstäben einzelner Einrichtungen der Gesundheitsversorgung (Mikroebene). Methoden Die Mitglieder der Krisenstäbe wurden mittels qualitativer semistrukturierter Interviews (10/2020–02/2021) befragt. Die Auswertung erfolgte mittels qualitativ strukturierender Inhaltsanalyse. Ergebnisse 42 Personen berichteten über 43 Krisenstäbe in 14 Bundesländern. Einheitliche Regelungen hinsichtlich der Initiierung, personellen Zusammenstellung, Aufgaben, Zuständigkeiten und Befugnisse von Krisenstäben gibt es in Deutschland nicht. Auf Makroebene werden rechtliche und finanzielle Voraussetzungen zur Pandemiebewältigung geschaffen. Die Hauptverantwortung für die Umsetzung von Maßnahmen zum Schutz der Gesundheit liegt bei den Krisenstäben der Meso- und Mikroebene selbst. Die Vorgaben der Gesundheitsämter sind dabei maßgeblich für die Krisenstabsarbeit. Zentrale Aufgaben und Maßnahmen bezogen sich auf die Informationsbereitstellung und die Beschaffung und Verteilung von Ressourcen. Diskussion Die gewonnenen Erkenntnisse zu Strukturen und Befugnissen von Krisenstäben können Interessenvertretungen dabei helfen, die Anliegen zur Aufrechterhaltung der Gesundheitsversorgung spezifischer Bevölkerungsgruppen, wie beispielsweise schwerkranker und sterbender Menschen, in Pandemiezeiten gezielter zu adressieren.

Residents expressed, inter alia, the following wishes: not to receive life-prolonging measures, not to have pain, not to be in need of care or bedridden, to receive affection while dying and to find forgiveness and reconciliation as well as to die peacefully in the residential and/or nursing home. In addition, there were a variety of wishes, which, due to their diversity make a unified approach to the palliative care of older people in residential and/or nursing homes impractical. The study showed that residents are thinking about dying and/or death, have desires for their dying and are also willing to talk about it. The recording and the translation of these wishes and also the response to the residents' fears can be achieved by the implementation of a palliative culture and the training of employees.

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.

Background: During the SARS-CoV-2 pandemic’s initial waves, bans on visiting and isolation measures placed limits on providing services for seriously ill and dying people and their relatives. Pandemic response teams at governmental level (macro), at federal state and municipal level (meso) and in healthcare facilities (micro) played their role in pandemic management procedures. Aim: To explore pandemic-related challenges and solutions of pandemic response teams regarding the provision of care to seriously ill and dying people and their relatives. Findings were to be integrated into a national strategy (PallPan). Design: Semi-structured expert interviews (10/2020–2/2021) analysed via structured content analysis. SettingParticipants: We interviewed 41 members, who discussed the work of 43 German pandemic response teams (micro n = 23; meso n = 20; no members were available at macro level) from 14 German federal states. Results: Twenty-nine of 43 teams took account of the needs of seriously ill and dying. Their main challenges resulted from pandemic-related legal requirements in hospitals and long-term care facilities. The implementation of such was in the remits of the meso level. Dysfunctional or non-existent communication between the levels was reported to be challenging. To foster patient-related solutions the micro level pandemic response teams supported individual decisions to enable patient-relative contact for example, visiting and saying goodbye outside, meeting via digital solutions. Conclusions: Pandemic response teams evidently struggled to find appropriate solutions to ease pandemic-related impact on the care of seriously ill and dying patients and their relatives. We recommend bringing palliative care expertise on board.

No abstract