Objectives To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life. Design Cross-sectional postbereavement survey. Setting Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany. Participants 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded. Results For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71). Conclusions Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements. Trial registration number DRKS00011925.

Objective The aim of the study is to examine differences in hospital care between patients with cancer and non-cancer conditions in their dying phase, perceived by bereaved relatives. Methods A retrospective cross-sectional post-bereavement survey, with the total population of 351 deceased, 91 cancer patients and 46 non-cancer patients, who spent their last 2 days of life in hospital. A validated German version of the VOICES-questionnaire ('VOICES-LYOL-Cologne') was used. Results There were substantial differences between the two groups in the rating of sufficient practical care such as pain relief or support to eat or drink (p = 0.005) and sufficient emotional care needs (p = 0.006) and in the quality of communication with healthcare professionals (p < 0.001), with non-cancer patients scoring lowest in all these dimensions. Conclusion In all surveyed dimensions on the quality of care in the dying phase, non-cancer patients' relatives rated the provided care worse than those of cancer patients. To compensate any differences in care in the dying phase between diagnosis groups, hospital care should be provided as needs-oriented and non-indication-specific.

Background: To inform quality improvement and strengthen services provided in the last year of life, measuring quality of care is essential. For Germany, data on care experiences in the last year of life that go beyond diagnoses and care settings are still rare. The aim of this study was to develop and validate a German version of the ‘Views of Informal Carers’ Evaluation of Services – Short Form (VOICES-SF)’ suitable to assess the quality of care and services received across settings and healthcare providers in the German setting in the last year of life (VOICES-LYOL-Cologne). Methods: VOICES-SF was adapted and translated following the ‘TRAPD’ team approach. Data collected in a retrospective cross-sectional survey with bereaved relatives in the region of Cologne, Germany were used to assess validity and reliability. Results: Data from 351 bereaved relatives of adult decedents were analysed. The VOICES-LYOL-Cologne demonstrated construct validity in performing according to expected patterns, i.e. correlation of scores to care experiences and significant variability based on care settings. It further correlated with the PACIC-S9 Proxy, indicating good criterion validity. The newly added scale “subjective experiences of process and outcome of care in the last year of life” showed good internal consistency for each given care setting, except for the homecare setting. Test-retest analyses revealed no significant differences in satisfaction ratings according to the length of time since the patient’s death. Overall, our data demonstrated the feasibility of collecting patient care experiences reported by proxy-respondents across multiple care settings. Conclusion: VOICES-LYOL-Cologne is the first German instrument to analyse care experiences in the last year of life in a comprehensive manner and encourages further research in German-speaking countries. This instrument enables the comparison of quality of care between settings and may be used to inform local and national quality improvement activities. Trial registration: This study was registered in the German Clinical Trials Register (DRKS00011925; Date of registration: 13/06/2017).

Introduction The Last Year of Life Study-Cologne Part I (LYOL-C I) has identified general hospital units as the most important checkpoints for transitions in the last year of life of patients. Yet, satisfaction with hospitals, as reported by bereaved relatives, is the lowest of all health service providers. Thus, the LYOL-C Part II (LYOL-C II) focuses on optimising patient-centred care in acute hospitals for patients identified to be in their last year of life. LYOL-C II aims to test an intervention for hospitals by using a two-sided (healthcare professionals (HCPs) and patients) trigger question-based intervention to ‘shake’ the system in a minimally invasive manner. Methods and analysis Prospective interventional mixed-methods study following a two-phase approach: phase I, individual interviews with HCPs and patient representatives to design the intervention to maximise ease of implementation and phase II, exploratory study with two arms and a prepost design with patients in their last year of life. The intervention will consist of the Surprise Question and the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE) for HCPs to identify patients and provide patient-centred care, plus question prompt sheets for patients, encouraging them to initiate discussions with their HCPs. Data on transitions, changes in therapy, quality of care, palliative care integration and death of patients will be analysed. Furthermore, a staff survey (pre/post) and guided interviews with staff, patients and relatives (post) will be conducted. Finally, a formative socioeconomic impact assessment to provide evidence regarding the sustainability of the intervention will be performed. Ethics and dissemination The study was approved by the Ethics Committee of the Faculty of Medicine of the University of Cologne (#20-1431). Results will be published in peer-reviewed journals and presented at national and international conferences. Trial registration number DRKS00022378.

Background: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients’ medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents’ LYOL.Methods: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent’s LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach’s alpha.Results: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed ≥5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item” Given a copy of their treatment plan” highest (mean 3.96), whereas “encouragement to get to a specific group or class to cope with the condition” (mean 1.74) was rated lowest. Cronbach’s alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett’s test for sphericityp < 0.001), with items’ factor loadings ranging from 0.46 to 0.82.Conclusions: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies.Trial registration: The study was registered in the German Clinical Trials Register (DRKS00011925) on 13 June 2017.

Background/Objectives: Identifying patients with palliative care needs can be challenging in clinical practice. This study reports on the tailoring and evaluation of a minimally invasive intervention (MINI) to support early planning of palliative care in acute hospitals. The MINI includes the Surprise Question (SQ) and the Supportive and Palliative Care Indicators Tool (SPICT^TM) for health and social care professionals, as well as a patient Question Prompt Sheet. Methods: A multi-method intervention study was conducted, including interviews and a pre–post survey of professionals on the development, implementation, and experiences with MINI. Interview data were analyzed inductively and survey data descriptively. Results: Data from 44 participants were included. MINI was generally considered acceptable and relevant, particularly the SQ, which prompted reflection among staff. Following the intervention, a significant improvement was observed in the presentation of regional specialist palliative care services for patients, as well as in the identification of psychosocial problems and their discussion with patients and relatives. While physicians reported increased confidence in initiating end-of-life conversations, other hospital staff showed mixed responses. Reported barriers for implementing MINI included limited time, the COVID-19 pandemic, staff strikes, emotional burden, and unclear responsibilities, indicating a low level of commitment. SPICT use was inconsistent, suggesting low integration into workflows. Interprofessional collaboration improved, particularly with external palliative care providers. Sustainability was hindered by a lack of institutional support, ongoing training, and formal routines. Conclusions: MINI may have the potential to shift the focus away from purely curative approaches. However, to guarantee success, future studies should ensure better alignment between intervention design, implementation and framework conditions.