Can we determine burdensome transitions in the last year of life based on time of occurrence and frequency? An explanatory mixed-methods study

Objective Burdensome transitions are typically defined as having a transition in the last three days or multiple hospitalizations in the last three months of life, which is seldom verified with qualitative accounts from persons concerned. This study analyses types and frequencies of transitions in the last year of life and indicators of burdensome transitions from the perspective of bereaved relatives. Method Cross-sectional explanatory mixed-methods study with 351 surveyed and 41 interviewed bereaved relatives in a German urban area. Frequencies, t-tests, and Spearman correlations were computed for quantitative data. Qualitative data were analyzed using content analysis with provisional and descriptive coding/subcoding. Results Transitions rise sharply during the last year of life. 8.2% of patients experience a transition in the last three days and 7.8% three or more hospitalizations in the last three months of life. An empathetic way of telling patients about the prospect of death is associated with fewer transitions in the last month of life (r = 0.185, p = 0.046). Professionals being aware of the preferred place of death corresponds to fewer hospitalizations in the last three months of life (1.28 vs. 0.97, p = 0.021). Qualitative data do not confirm that burden in transitions is linked to having transitions in the last three days or multiple hospitalizations in the last three months of life. Burden is associated with (1) late and non-empathetic communication about the prospect of death, (2) not coordinating care across settings, and (3) not considering patients' preferences. Significance of results Time of occurrence and frequency appear to be imperfect proxies for burdensome transitions. The subjective burden seems to be associated rather with insufficient information, preparation, and management of transitions

Dying in hospital is worse for non-cancer patients. A regional cross-sectional survey of bereaved relatives' views

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

The last year of life for patients dying from cancer vs. non-cancer causes: a retrospective cross-sectional survey of bereaved relatives

Purpose To compare health care experiences of patients with cancer or non-cancer diseases in their last year of life. Methods A cross-sectional post-bereavement survey was conducted using an adapted German version of the VOICES questionnaire (VOICES-LYOL-Cologne). Differences in the reported experiences were assessed using a two-sided Pearson's chi-square test and Mann-Whitney U test. Results We collected data from 351 bereaved relatives. More than half of non-cancer patients were not informed that their disease could lead to death (p < 0.001). When this was communicated, in 46.7% of non-cancer and 64.5% of cancer patients, it was reported by the hospital doctor (p = 0.050). In all, 66.9% of non-cancer and 41.6% of cancer patients were not informed about death being imminent (p < 0.001). On average, non-cancer patients had significantly fewer transitions and hospital stays in their last year of life (p = 0.014; p = 0.008, respectively). Non-cancer patients were treated more often by general practitioners, and cancer patients were treated more often by specialists (p = 0.002; p = 0.002, respectively). A substantially lower proportion of non-cancer patients were treated by at least one member of or in the setting of general or specialized palliative care (p < 0.001). Conclusions Non-cancer patients experience disadvantages in communication regarding their care and in access to specialized palliative care in their last year of life compared to cancer patients. Regarding the assessment of palliative care needs and the lack of communication of an incurable disease, non-cancer patients are underserved. An early identification of patients requiring palliative care is a major public health concern and should be addressed irrespective of diagnosis

What are the risk factors for avoidable transitions in the last year of life? A qualitative exploration of professionals' perspectives for improving care in Germany

BackgroundLittle is known about the nature of patients' transitions between healthcare settings in the last year of life (LYOL) in Germany. Patients often experience transitions between different healthcare settings, such as hospitals and long-term facilities including nursing homes and hospices. The perspective of healthcare professionals can therefore provide information on transitions in the LYOL that are avoidable from a medical perspective. This study aims to explore factors influencing avoidable transitions across healthcare settings in the LYOL and to disclose how these could be prevented.MethodsTwo focus groups (n=11) and five individual interviews were conducted with healthcare professionals working in hospitals, hospices and nursing services from Cologne, Germany. They were asked to share their observations about avoidable transitions in the LYOL. The data collection continued until the point of information power was reached and were audio recorded and analysed using qualitative content analysis.ResultsFour factors for potentially avoidable transitions between care settings in the LYOL were identified: healthcare system, organization, healthcare professional, patient and relatives. According to the participants, the most relevant aspects that can aid in reducing unnecessary transitions include timely identification and communication of the LYOL; consideration of palliative care options; availability and accessibility of care services; and having a healthcare professional taking main responsibility for care planning.ConclusionsPreventing avoidable transitions by considering the multicomponent factors related to them not only immediately before death but also in the LYOL could help to provide more value-based care for patients and improving their quality of life

Patient-centered care during the last year of life: adaptation and validation of the German PACIC short form for bereaved persons as proxies (PACIC-S9-proxy)

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

Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers

Objectives Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers. Methods This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process. Results Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want. Significance of results Our findings suggest the necessity for greater awareness of patients' and their relatives' needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care

Quality of care in the last year of life: adaptation and validation of the German “Views of Informal Carers’ Evaluation of Services – Last Year of Life – Cologne”

Abstract 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)

Last Year of Life Study-Cologne (LYOL-C) (Part II): study protocol of a prospective interventional mixed-methods study in acute hospitals to analyse the implementation of a trigger question and patient question prompt sheets to optimise patient-centred care

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

Improving regional care in the last year of life by setting up a pragmatic evidence-based Plan–Do–Study–Act cycle: results from a cross-sectional survey

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

What are the risk factors for avoidable transitions in the last year of life? A qualitative exploration of professionals’ perspectives for improving care in Germany

Background!#!Little is known about the nature of patients' transitions between healthcare settings in the last year of life (LYOL) in Germany. Patients often experience transitions between different healthcare settings, such as hospitals and long-term facilities including nursing homes and hospices. The perspective of healthcare professionals can therefore provide information on transitions in the LYOL that are avoidable from a medical perspective. This study aims to explore factors influencing avoidable transitions across healthcare settings in the LYOL and to disclose how these could be prevented.!##!Methods!#!Two focus groups (n = 11) and five individual interviews were conducted with healthcare professionals working in hospitals, hospices and nursing services from Cologne, Germany. They were asked to share their observations about avoidable transitions in the LYOL. The data collection continued until the point of information power was reached and were audio recorded and analysed using qualitative content analysis.!##!Results!#!Four factors for potentially avoidable transitions between care settings in the LYOL were identified: healthcare system, organization, healthcare professional, patient and relatives. According to the participants, the most relevant aspects that can aid in reducing unnecessary transitions include timely identification and communication of the LYOL; consideration of palliative care options; availability and accessibility of care services; and having a healthcare professional taking main responsibility for care planning.!##!Conclusions!#!Preventing avoidable transitions by considering the multicomponent factors related to them not only immediately before death but also in the LYOL could help to provide more value-based care for patients and improving their quality of life