'I see the high level of interpersonal support during the pandemic as proof that the good in people prevails': the COVID-19 pandemic as a catalyst for building a caring community?

BACKGROUND: The public health approach to end-of-life care has led to initiatives to promote caring communities, involving the community in supporting vulnerable dying people and their families. Our study aimed to explore how the COVID-19 pandemic affected the relevance of a caring community, whether the concept of a caring community took on a different meaning during and because of the pandemic, and how issues of death, dying and bereavement were perceived. METHODS: Qualitative online survey of people interested in the 'Caring Community Cologne' project. Participants in the survey attended the launch event for the Caring Community in Cologne. Direct invitations were sent to professionals and experts in various fields. Information about the event was also disseminated via social media and the city of Cologne's website. Data were collected from June 2020 to August 2020 and analyzed using Braun & Clarke's thematic analysis. RESULTS: N = 63 out of 121 people participated. The median age was 60 years; 65% of the participants were female. Most of them worked in the social sector (53%). Three respondents described positive changes brought about by the pandemic: Greater sense of community and solidarity, more confrontation with one's own finiteness, strengthening of relationships, mindfulness and slowing down of the pace of life. Negative effects mentioned included a deterioration in mental health and well-being, with an increase in anxiety, social isolation but also forced togetherness, which can lead to conflict, and a lack of emotional closeness due to restricted contact. CONCLUSIONS: Our study was conducted at the beginning of the pandemic and shows that the pandemic has raised awareness of the importance and potential benefits of community-based networks and the importance of adopting a public health palliative care approach to advocate for those most in need. The findings also highlight the role of community social capital in promoting engagement, resilience and well-being.

["The total time spent by the general practitioner decreases": The referring physician's view of a palliative day care clinic]. / "Der zeitliche Gesamtaufwand für den Hausarzt sinkt": Die Sicht der Zuweisenden auf eine palliativmedizinische Tagesklinik.

BACKGROUND: Palliative day-care clinics (PDCCs) can complement inpatient and outpatient specialized palliative care. Some studies have shown improvements in the patients'́ symptoms, functional level and psychological well-being, while others have not. This study aimed to document the experience of referring physicians with PDCCs. METHOD: A postal questionnaire was sent to referring physicians between 11/2020 and 3/2021. The questionnaire included open and closed questions about professional background, symptom control, medical / psychosocial benefits for patients and challenges in the collaboration. Closed, 5-point scaled questions were analyzed descriptively with IBM SPSS Statistics 25®, open questions with a thematic content analysis using MAXQDA 2020®. RESULTS: Of the 96 referring physicians contacted, 76 questionnaires were returned (79%), 73 of which could be analyzed. Most referring physicians were general practitioners (57%), followed by oncologists (28%). 12% had completed further training in palliative medicine and had been working with patients with palliative care needs for an average of almost 19 years. On average, they had referred 24 patients (range 1-200) to a PDCC. 93% said that inpatient stays were delayed or avoided by PDCCs. 97% were of the opinion that their patients achieved a (great or rather great) benefit from medical treatment, and 96% thought that they benefited (to a great or rather great degree) from psychosocial treatment. 58% said that their own time spent with patients treated at the PDCC had decreased. In addition, a total of 227 open comments on challenges in cooperation, suggestions for optimization, reasons for referring patients and general wishes for PDCCs were analyzed. DISCUSSION: The high response rate to the questionnaires shows that PDCCs are of great importance to referring physicians. They consider the cooperation with PDCCs to be supportive and helpful for both themselves and their patients. CONCLUSION: PDCCs make an important contribution to palliative care. Almost all respondents believe that treatment at a PDCC prevents or delays hospitalization.

"Such an institution represents the circle of life" - bringing an inpatient hospice into an academic setting: a pre-implementation exploratory study.

BACKGROUND: To combine the benefits of hospice and palliative care, the integration of both seems self-evident. Aim of this study was to explore clinical staff's and volunteers' expectations and concerns of the first university hospice in Germany planning for implementation. METHODS: Staff and volunteers of the Department of Palliative Medicine of the University Hospital in Cologne received questionnaires and were interviewed following three themes of interest: opportunities, challenges, general criteria. Questionnaire results were analyzed descriptively using mean ± SD and percentages, open-ended questions and interviews were analysed using content analysis. RESULTS: A total of 28/100 questionnaires was returned (n = 17 clinical staff, n = 11 volunteers) and 18 interviews conducted. The majority of both clinical staff and volunteers estimated the need for a university inpatient hospice as rather to very high (64.7% and 81.8%, respectively). Our findings revealed that most clinical staff and volunteers anticipated improvements with the intended university inpatient hospice, although their expectations were divided between both hope and concern while adhering to legal and general requirements, which they feared might oppose such a project. Participants expressed concern about leadership and staffing plans, albeit most pronounced among clinical staff. Nursing staff repeatedly articulated concerns about being interchanged between the palliative care ward and the intended inpatient hospice while they had explicitly chosen to work in palliative medicine. CONCLUSIONS: The overall high level of anticipated progress and excitement is very encouraging. Albeit serious concerns were mentioned, our results indicate that all participants believe in a positive impact and highlight the need of developing a solid concept. In order to implement such a hospice within a university setting, it is important to consider multilevel contextual factors such as system-level factors (funding, external and internal regulations), organization-level factors (leadership, staff motivation), and patient-level factors (adaptability to patients' needs). Our findings illustrate the importance of understanding the context of practice before implementation. Our pre-implementation study helps identify critical views from staff members and volunteers that may hinder or advance the implementation. TRIAL REGISTRATION: The study was registered at the German Clinical Trials Register (#DRKS00021258) on April 17th 2020.

"My everyday life has returned to normal"- Experiences of patients and relatives with a palliative day care clinic: a qualitative evaluation study.

PURPOSE: Palliative day care clinics (PDCCs) complement inpatient and home palliative care and provide access to a range of multi-professional services. However, they are not part of standard care in Germany. Yet, international studies show that PDCCs have a positive impact on e.g. quality of life. To evaluate one of the first PDCCs in Germany (Aschaffenburg-Alzenau (PDCC-AA)) by describing the experiences, satisfaction, challenges, wishes of patients and relatives and possible alternatives to treatment in the PDCC. METHODS: Qualitative study using semi-structured telephone interviews. Data was analyzed using qualitative structuring content analysis according to Kuckartz with deductive a priori categories and inductive subcategories. RESULTS: A total of 31 patients and 38 relatives completed telephone interviews. The majority of patients were diagnosed with a cancer or tumor disease. The following four main themes emerged: (1) alternatives to treatment at the PDCC, (2) symptom relief, (3) sense of security, (4) "everyday life framing" (normality of everyday life). Participants valued the medical treatment (especially for pain), psychosocial support given and having direct access to a range of services (e.g., wound care and pleural drainage), while relatives valued being provided respite services. A sense of security, availability of therapies, and devoted time that healthcare providers spent to explain e.g., treatment options were mentioned most positively, as well as confidence in dealing with the illness. As to whether there was an alternative to treatment in the PDCC, some saw further inpatient stays, the emergency room or care by general practitioners as options (although not preferred). Patients expressed concern that they were not treated and informed according to their needs in other care settings. CONCLUSIONS: PDCCs may close a gap between inpatient and home palliative care. Participants mentioned that hospital stays can be delayed or even prevented.

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. TRIAL REGISTRATION: Prospectively registered by the German Clinical Trials Register (DRKS00011925, data of registration: 13.06.2017).

Availability as key determinant in the palliative home care setting from the patients' and family caregivers' perspectives: A quantitative-qualitative-content analysis approach.

OBJECTIVE: A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients' and family caregivers' perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. METHODS: The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. RESULTS: One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. SIGNIFICANCE OF RESULTS: The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

"Saying goodbye all alone with no close support was difficult"- Dying during the COVID-19 pandemic: an online survey among bereaved relatives about end-of-life care for patients with or without SARS-CoV2 infection.

BACKGROUND: During the SARS-CoV2 pandemic, protection measures, as well as visiting restrictions, had a severe impact on seriously ill and dying patients and their relatives. The study aims to describe the experiences of bereaved relatives of patients who died during the SARS-CoV2 pandemic, regardless of whether patients were infected with SARS-CoV2 or not. As part of this, experiences related to patients' end-of-life care, saying goodbye, visiting restrictions and communication with the healthcare team were assessed. METHODS: An open observational post-bereavement online survey with free text options was conducted with 81 bereaved relatives from people who died during the pandemic in Germany, with and without SARS-CoV2 diagnosis. RESULTS: 67/81 of the bereaved relatives were female, with a mean age of 57.2 years. 50/81 decedents were women, with a mean age of 82.4 years. The main underlying diseases causing death were cardiovascular diseases or cancer. Only 7/81 of the patients were infected with SARS-CoV2. 58/81 of the relatives felt burdened by the visiting restrictions and 60/81 suffered from pandemic-related stress. 10 of the patients died alone due to visiting restrictions. The burden for relatives in the hospital setting was higher compared to relatives of patients who died at home. 45/81 and 44/81 relatives respectively reported that physicians and nurses had time to discuss the patient's condition. Nevertheless, relatives reported a lack of proactive communication from the healthcare professionals. CONCLUSIONS: Visits of relatives play a major role in the care of the dying and have an impact on the bereavement of relatives. Visits must be facilitated, allowing physical contact. Additionally, virtual contact with the patients and open, empathetic communication on the part of healthcare professionals is needed. TRIAL REGISTRATION: German Clinical Trials Register (DRKS00023552).

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. TRIAL REGISTRATION NUMBER: DRKS00022378.

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.

Follow-Ups with callers of a palliative and hospice care hotline for severely affected multiple sclerosis patients: Evaluation of its impact.

BACKGROUND: Palliative and Hospice Care (PHC) focuses on improving quality of life for anyone who has a serious illness. Multiple Sclerosis (MS) patients have significant PHC needs, yet PHC still mostly attends to cancer patients. The implemented and evaluated nationwide PHC-MS hotline (Strupp et al., 2017) appeared to provide a useful service to patients. OBJECTIVES: Prospective follow-up study to evaluate the impact of the hotline and analyse challenges and possible barriers to integrating PHC services. METHODS: Information on implementing PHC services was gathered through follow-up hotline consultations utilising a standardised documentary sheet. Data was analysed descriptively and several individual cases are presented. RESULTS: Of 303 calls to the hotline (54.5% female, mean age 51 years, 87.7% chronic progressive MS, mean duration of illness 17 years, median EDSS 8), for 84 (27.7%) PHC services were indicated. Of these 84 patients, 32 agreed to follow-up calls which were conducted at least once. For 6 (19%) patients, PHC service integration was successful. For 5 (16%) PHC was refused. For 5 (16%) PHC did not fit current patient needs, and for 7 (22%) PHC has not yet been contacted by patients (or caregivers). For a further 9 (28%) follow-ups revealed that no more consultation was possible (e.g., caller lost to follow-up). CONCLUSION: The PHC approach and its services as well as legislation are still highly focused on cancer care, although patients with long-term neurological conditions would likely benefit greatly from them.

How to Talk About Attitudes Toward the End of Life: A Qualitative Study.

To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.

Last Year of Life Study Cologne (LYOL-C): protocol for a cross-sectional mixed methods study to examine care trajectories and transitions in the last year of life until death.

INTRODUCTION: The 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 ANALYSIS: LYOL-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 DISSEMINATION: Ethical 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 NUMBER: The study is registered in the German Clinical Trials Register (DRKS00011925) and in the Health Services Research Database (VfD_CoRe-Net_17_003806).

Measuring attitudes towards the dying process: A systematic review of tools.

BACKGROUND: At the end of life, anxious attitudes concerning the dying process are common in patients in Palliative Care. Measurement tools can identify vulnerabilities, resources and the need for subsequent treatment to relieve suffering and support well-being. AIM: To systematically review available tools measuring attitudes towards dying, their operationalization, the method of measurement and the methodological quality including generalizability to different contexts. DESIGN: Systematic review according to the PRISMA Statement. Methodological quality of tools assessed by standardized review criteria. DATA SOURCES: MEDLINE, PsycINFO, PsyndexTests and the Health and Psychosocial Instruments were searched from their inception to April 2017. RESULTS: A total of 94 identified studies reported the development and/or validation of 44 tools. Of these, 37 were questionnaires and 7 alternative measurement methods (e.g. projective measures). In 34 of 37 questionnaires, the emotional evaluation (e.g. anxiety) towards dying is measured. Dying is operationalized in general items ( n = 20), in several specific aspects of dying ( n = 34) and as dying of others ( n = 14). Methodological quality of tools was reported inconsistently. Nine tools reported good internal consistency. Of 37 tools, 4 were validated in a clinical sample (e.g. terminal cancer; Huntington disease), indicating questionable generalizability to clinical contexts for most tools. CONCLUSION: Many tools exist to measure attitudes towards the dying process using different endpoints. This overview can serve as decision framework on which tool to apply in which contexts. For clinical application, only few tools were available. Further validation of existing tools and potential alternative methods in various populations is needed.

Severely Affected by Parkinson Disease: The Patient's View and Implications for Palliative Care.

INTRODUCTION: People severely affected by Parkinson disease (PD)/atypical parkinsonism (AP) comprise a heterogeneous group with distinct needs, which so far remain largely unexamined. The aim of our study was to analyze reasons for feeling severely affected and document unmet needs in a patient subgroup severely affected by PD/AP using solely a subjective inclusion criterion. METHODS: Patients feeling severely affected by PD/AP were recruited via a magazine published by the German Parkinson Association. A questionnaire was sent out nationwide. Besides analyzing the closed-ended questions, a subsample of 40% was analyzed regarding the open-ended questions using content analysis. Correlations between subjectively felt severe affectedness and objective criteria were calculated. RESULTS: Eight hundred fourteen questionnaires were analyzed. Sample characteristics were: mean age 70 years; 60.3% male; time since diagnosis up to 37 years; and Hoehn and Yahr score (if known) 3 (44.6%), followed by 4 (23.9%). Significant associations were observed between subjectively felt severe affectedness and Hoehn and Yahr ( P ≤ .05), poorer health ( P ≤ .01), higher nursing care level ( P ≤ 0.01), and having no children ( P ≤ .05). Most common reasons for feeling severely affected were mobility impairment (34.9%), coordination problems (17.0%), speech problems (12.2%), and limited day-to-day activities (7.8%). Most often expressed unmet needs were support in everyday life (28.1%), medical treatment (15.2%), help with financial services (11.6%), and social integration (9.9%). CONCLUSIONS: To meet the complex needs, an integrated multidisciplinary and multiprofessional approach is indicated befitting palliative care principles. Herein, home-based services seem of special importance for patients in advanced disease stages.

Analysing the impact of a case management model on the specialised palliative care multi-professional team.

PURPOSE: Palliative care (PC) involves many health care providers leading to a high complexity of structures that requires efficient coordination as provided by case management (CM). Our study aimed to evaluate the effects of CM newly implemented in a specialised palliative care unit by evaluating team members' tasks and time resources before (T0) and after implementation (T1). It was hypothesised that team members would be able to spend less time on organisational and administrative tasks and more time on patient care. METHODS: A prospective pre-post study design was used. Time distribution of different tasks at T0 and T1 was compared between three different professional groups: physicians, nursing staff and social work. To document their tasks and time required, a documentation form with several items for each profession was developed. Data was analysed using t tests for independent samples. RESULTS: After Bonferroni correction, a significant pre-post difference was found for the time spent on "discharge interview and discharge" as rated by the physicians (p < .001) with less time spent on this activity after CM implementation. The nursing staff had significantly more time for "conversations with patients" (p < .001) after CM implementation. Moreover, they spent significantly less time on "patient-related requests/advice by telephone" (p < .001) and "discussions with relatives/participation in family discussions" at post-assessment (p < .001). The social worker had significantly more time for "patient advice and support services" (p = .013) after CM implementation. CONCLUSIONS: Integrating CM can be time efficient and ensures team members to spend more time on their core tasks in patient care.

Development of a short form of the Spanish schedule of attitudes toward hastened death in a palliative care population.

PURPOSE: The schedule of attitudes toward hastened death (SAHD) is widely used to assess the wish to hasten death (WTHD) among patients with life-threatening conditions. A short form of the SAHD would increase its clinical applicability in this population. METHOD: Rasch analysis of data from 101 Spanish palliative inpatients. Item reduction involved selecting items with a high discrimination index (point-biserials ≥0.70), removing items with inadequate fit statistics, and assessing unidimensionality and local dependency. We examined the test probability function to establish an empirical risk score for suffering a WTHD and tested convergence between the original and the reduced set of items. RESULTS: A set of five items met all quality criteria. In this sample, 20.8 % of participants had a higher risk of a WTHD (p > 50 %) at a score of 3. Correlation analysis confirmed convergent validity between the original and reduced forms. Concurrent validity was confirmed by the similar correlations shown by both versions of the SAHD (5 and 20 items) with other measures. CONCLUSION: This 5-item Spanish form of the SAHD could be a suitable alternative to the full instrument. The cut-off score derived from the Rasch analysis may be able to detect patients at risk of a WTHD.

A palliative care hotline for multiple sclerosis: A pilot feasibility study.

OBJECTIVE: Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study. METHOD: The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care). RESULTS: During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers. SIGNIFICANCE OF RESULTS: Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.

Validation of the German version of the Schedule of Attitudes Toward Hastened Death (SAHD-D) with patients in palliative care.

OBJECTIVE: Reliable and validated instruments are needed in order to study the desire for hastened death (DHD). As there is no instrument in the German language to measure DHD, our aim was to validate a German version of the Schedule of Attitudes Toward Hastened Death (SAHD-D). METHOD: The SAHD was translated following guidelines promulgated by the European Organization for Research and Treatment of Cancer (EORTC). In eligible patients (clinical situation adequate, MMSE ≥21), the following instruments were employed: a symptom checklist (HOPE), the HADS-D (Hospital Anxiety and Depression Scale), the EORTC-QLQ-PAL15, and the SAHD-D, as well as an external estimation of DHD provided by the attending physician. A high level of DHD was defined as the mean plus one standard deviation (SD). RESULTS: Of the 869 patients assessed, 92 were eligible for inclusion (66% females, mean age of 64.5 years). The SAHD-D total score ranged from 0 to 18, with a mean of 5 and a standard deviation (SD) of 3.7. A high level of DHD was found in 20% (n = 19). For discriminant validity, significant correlations were found between the SAHD-D and depression (r rho = 0.472), anxiety (r rho = 0.224), and clinical state (r rho = 0.178). For criterion validity, the external estimate of DHD showed a low significant correlation with patient score (r rho = 0.290). Factor analysis of the SAHD-D identified two factors. SIGNIFICANCE OF RESULTS: Validation of the SAHD-D illustrated good discriminant validity, confirming that a desire to hasten death is a construct separate from depression, anxiety, or physical state. The unidimensionality of the SAHD could not be reproduced. Our findings support the multifactorial interdependencies on DHD and suggest that the SAHD-D should be refined by considering actual wishes, general attitudes, and options of patients.

Self-rating makes the difference: identifying palliative care needs of patients feeling severely affected by multiple sclerosis.

OBJECTIVE: People feeling severely affected by multiple sclerosis (MS) comprise a heterogeneous group, and this heterogeneity leads to very distinct needs and makes planning for needs difficult. To provide optimal care, it is important to identify specific needs in specific subgroups. Our objective was to identify the specific palliative care (PC) needs of patients who felt severely affected by the disease by analyzing their feeling (1) more or (2) less severely affected and their possible differences in expressed care needs. METHOD: A self-report questionnaire with 25 needs categories including 7 categories pertaining to care was applied to patients who felt severely affected by MS. An additional single question identified patients feeling more (≥7, median-split) and less (<7) severely affected. Differences were analyzed by chi-squared and Mann-Whitney U tests. The sample (N = 573) was composed of respondents who replied to an invitation by the German Multiple Sclerosis Society to participate in a survey on unmet needs of severely affected patients. RESULTS: Of 573 patients (median age 51), 358 (62.48%) felt more severely affected. Compared to patients feeling less severely affected, they found the stress on their next of kin to be higher (p < 0.001), were in greater need of home visitation (p < 0.001), did not have permanent neurologists (p = 0.016), and felt that they visited them too rarely (p < 0.0001). They also needed more emotional support from their nursing care service (p = 0.006). SIGNIFICANCE OF RESULTS: A self-rating scale can identify two groups of patients with different care needs. These data may help shaping patient-centered support structures. Palliative care, with its multidisciplinary approach, might be one further option to meet the specific needs of patients and their relatives.