ObjectivesTo 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.DesignCross-sectional postbereavement survey.SettingRegional 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.Participants351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded.ResultsFor 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).ConclusionsFollowing 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 numberDRKS00011925.
IntroductionThe last year of life constitutes a particularly vulnerable phase for patients, involving nearly all health and social care structures. Yet, little scientific evidence is available that provides insight into the trajectories including the number and types of care setting transitions, transitions into palliative care and the dying phase. Only few studies have focused on difficulties associated with having to move between health and social care settings in the last year of life, although patients face a significant risk of adverse events. The Last Year of Life Study Cologne (LYOL-C) aims to fill this gap.Methods and analysisLYOL-C is a mixed-methods study composed of four steps: (1) Claims data collected by the statutory health insurance funds of deceased persons will be analysed with regard to patient care trajectories, health service transitions and costs in the last year of life. (2) Patient trajectories and transitions in healthcare will additionally be reconstructed by analysing the retrospective accounts of bereaved relatives (n=400) using a culturally adapted version of the Views of Informal Carers—Evaluation of Services Short Form questionnaire and the Patient Assessment of Care for Chronic Conditions Short Form questionnaire adapted for relatives. (3) Qualitative interviews with bereaved relatives (n=40–60) will provide in-depth insight into reasons for transitions and effects on patients’ quality of life. (4) Focus groups (n=3–5) with Healthcare Professionals will be conducted to discuss challenges associated with transitions in the last year of life.Ethics and disseminationEthical approval has been obtained from the Ethics Commission of the Faculty of Medicine of Cologne University (#17–188). Results will be submitted for publication in peer-reviewed journals and presented at national and international conferences.Trial registration numberThe study is registered in the German Clinical Trials Register (DRKS00011925) and in the Health Services Research Database (VfD_CoRe-Net_17_003806).
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 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 sphericity p < 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.
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