Providing palliative care for residents in LTC facilities: an analysis of routine data of LTC facilities in Lower Saxony, Germany.

BACKGROUND: Demographic trends show an increasing number of elderly people and thus a growing need for palliative care (PC). Such care is increasingly being provided by long-term care (LTC) facilities. The present study aimed at exploring PC indicators of residents at LTC facilities belonging to a non-profit provider in Lower Saxony, Germany, in order to identify potential improvements. METHODS: A descriptive cross-sectional study was conducted, drawing on routine nursing chart data. Structural data from 16 participating LTC facilities and the care data of all residents who died in 2019 (N = 471) were collected anonymously between March and May 2020. Based on key literature on quality indicators of PC in LTC facilities in Germany, a structured survey was developed by a multidisciplinary research team. The descriptive, comparative and inferential data analysis was conducted using the SPSS software package. RESULTS: In total, the complete records of 363 (77%) residents who died in the participating LTC facilities in 2019 were retrieved. The records reflected that 45% of the residents had been hospitalized at least once during the last 6 months of their lives, and 19% had died in hospital. Advance care planning (ACP) consultation was offered to 168 (46%) residents, and 64 (38%) declined this offer. A written advance directive was available for 47% of the residents. A specialized PC team and hospice service volunteers were involved in caring for 6% and 14% of the residents, respectively. Cancer patients received support from external services significantly more frequently (p < .001) than did non-cancer patients. Differences emerged in the distribution of PC indicators between LTC facilities. Facilities that have more PC trained staff offered more ACP, supported by more specialized PC teams and hospice services, and had fewer hospitalizations. In addition, more volunteer hospice services were offered in urban facilities. CONCLUSIONS: Overall, a rather positive picture of PC in participating LTC facilities in Germany emerged, although there were differences in the expression of certain indicators between facilities. ACP consultation, volunteer hospice services, and hospital admissions appeared to be superior in LTC facilities with more trained PC staff. Therefore, PC training for staff should be further promoted.

Structured implementation of the Supportive and Palliative Care Indicators Tool in general practice - A prospective interventional study with follow-up.

BACKGROUND: General practitioners (GPs) play a key role in the provision of primary palliative care (PC). The identification of patients who might benefit from PC and the timely initiation of patient-centred PC measures at the end of life are essential, yet challenging. Although different tools exist to support these key tasks, a structured approach is often missing. OBJECTIVE: The study aimed at implementing the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE™) in general practices, following a structured and regional approach, in order to evaluate the effects of this tool on the identification of patients with potential PC needs and the initiation of patient-centred PC measures. METHODS: The intervention of this mixed-methods study comprised a standardised training of 52 GPs from 34 general practices in two counties in Lower Saxony, Germany, on the use of the SPICT-DE™. The SPICT-DE™ is a clinical tool which supports the identification of patients with potential PC needs. Subsequently, over a period of 12 months, GPs applied the SPICT-DE™ in daily practice with adult patients with chronic, progressive diseases, and completed a follow-up survey 6 months after the initial patient assessment. The outcome parameters were alterations in the patient's clinical situation, and the type and number of initiated patient-centred PC measures during the follow-up interval. Additionally, 12 months after the standardised training, GPs provided feedback on their application of the SPICT-DE™. RESULTS: A total of 43 GPs (n = 15 female, median age 53 years) out of an initial sample of 52 trained GPs assessed 580 patients (n = 345 female, median age 84 years) with mainly cardiovascular (47%) and cancer (33%) diseases. Follow-up of 412 patients revealed that 231 (56%) experienced at least one critical incident in their disease progression (e.g. acute crisis), 151 (37%) had at least one hospital admission, and 141 (34%) died. A review of current treatment/medication (76%) and a clarification of treatment goals (53%) were the most frequently initiated patient-centred PC measures. The majority of GPs deemed the SPICT-DE™ practical (85%) and stated an intention to continue applying the tool in daily practice (66%). CONCLUSIONS: The SPICT-DE™ is a practical tool that supports the identification of patients at risk of deterioration or dying and promotes the initiation of patient-centred PC measures. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (N° DRKS00015108; 22/01/2019).

Caring for frail older patients in the last phase of life : Challenges for general practitioners in the integration of geriatric and palliative care.

BACKGROUND: The best possible care for frail older patients at the end of life can require the integration of geriatric and palliative approaches, possibly with different accentuations at different times. General practitioners (GP) are particularly important in this context: they provide patients with low-threshold primary care close to their homes and provide both general palliative care and geriatric services. OBJECTIVE: What are the challenges for GPs in caring for frail older patients at the end of their lives? MATERIAL AND METHODS: A secondary data analysis of 52 qualitative interviews was carried out, which were serially obtained at 4 points in time over a period of 18 months with 14 family doctors. In addition, one focus group with five GPs took place. The analysis was carried out according to the principles of grounded theory. RESULTS: The results show that GPs see the care of frail older patients at the end of their lives through a) the growing number of older people, b) multimorbidity and complexity of the problem areas, c) the integration of geriatric and palliative approaches, d) the high average age of general practitioners and the lack of junior staff and e) the problem of ensuring care in rural areas as a major challenge. The practical transition between geriatric and palliative care is considered by GPs to be fluid and there is a desire for more integration of both disciplines. CONCLUSION: In this study GPs perceived a large overlap between geriatric and palliative care. Both approaches should be offered for a selection of patients as a combined service. In the future a systematic network between GPs and geriatricians in practices, clinics, and day clinics will be necessary.

Optimal care at the end of life (OPAL): study protocol of a prospective interventional mixed-methods study with pretest-posttest-design in a primary health care setting considering the view of general practitioners, relatives of deceased patients and health care stakeholders.

BACKGROUND: At the end of life, about 85-90% of patients can be treated within primary palliative care (PC) provided by general practitioners (GPs). In Germany, there is no structured approach for the provision of PC by GPs including a systematic as well as timely identification of patients who might benefit from PC, yet. The project "Optimal care at the end of life" (OPAL) focusses on an improvement of primary PC for patients with both oncological and non-oncological chronic progressive diseases in their last phase of life provided by GPs and health care services. METHODS: OPAL will take place in Hameln-Pyrmont, a rural region in Lower Saxony, Germany. Target groups are (a) GPs, (b) relatives of deceased patients and (c) health care providers. The study follows a three-phase approach in a mixed-methods and pre-post design. In phase I (baseline, t0) we explore the usual practice of providing PC for patients with chronic progressive diseases by GPs and the collaboration with other health care providers. In phase II (intervention) the Supportive and Palliative Care Indicators Tool (SPICT) for the timely identification of patients who might benefit from PC will be implemented and tested in general practices. Furthermore, a public campaign will be started to inform stakeholders, to connect health care providers and to train change agents. In phase III (follow-up, t1) we investigate the potential effect of the intervention to evaluate differences in the provision of PC by GPs and to convey factors for the implementation of SPICT in general practices. DISCUSSION: The project OPAL is the first study to implement the SPICT-DE regionwide in general practices in Germany. The project OPAL may contribute to an overall optimisation of primary PC for patients in Germany by reducing GPs' uncertainty in initiating PC, by consolidating their skills and competencies in identifying patients who might benefit from PC, and by improving the cooperation between GPs and different health care stakeholders. TRIAL REGISTRATION: The study was retrospectively registered at the German Clinical Trials Register (Deutsches Register Klinischer Studien; trial registration number: DRKS00015108 ; date of registration: 22th of January 2019).

Systematic development and adjustment of the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE).

BACKGROUND: The Supportive and Palliative Care Indicators tool (SPICT) supports the identification of patients with potential palliative care (PC) needs. An Austrian-German expert group translated SPICT into German (SPICT-DE) in 2014. The aim of this study was the systematic development, refinement, and testing of SPICT-DE for its application in primary care (general practice). METHODS: SPICT-DE was developed by a multiprofessional research team according to the TRAPD model: translation, review, adjudication, pretesting and documentation. In a pretest, five general practitioners (GPs) rated four case vignettes of patients with different PC needs. GPs were asked to assess whether each patient might benefit from PC or not (I) based on their subjective appraisal ("usual practice") and (II) by using SPICT-DE. After further refinement, two focus groups with 28 GPs (68% with a further qualification in PC) were conducted to test SPICT-DE. Again, participants rated two selected case vignettes (I) based on their subjective appraisal and (II) by using SPICT-DE. Afterwards, participants reflected the suitability of SPICT-DE for use in their daily practice routine within the German primary care system. Quantitative data were analysed with descriptive statistics and non-parametric tests for small samples. Qualitative data were analysed by conventional content analysis. Focus group discussion was analysed combining formal and conventional content analysis. RESULTS: Compared to the spontaneous rating of the case vignettes based on subjective appraisal, participants in both the pretest and the focus groups considered PC more often as being beneficial for the patients described in the case vignettes when using SPICT-DE. Participants in the focus groups agreed that SPICT-DE includes all relevant indicators necessary for an adequate clinical identification of patients who might benefit from PC. CONCLUSIONS: SPICT-DE supports the identification of patients who might benefit from PC and seems suitable for routine application in general practice in Germany. The systematic development, refinement, and testing of SPICT-DE in this study was successfully completed by using a multiprofessional and participatory approach.

Metamizole/dipyrone for the relief of cancer pain: A systematic review and evidence-based recommendations for clinical practice.

BACKGROUND: Dipyrone (metamizole) is one of the most widely used non-opioid analgesics for the treatment of cancer pain. AIM: Because evidence-based recommendations are not yet available, a systematic review was conducted for the German Guideline Program in Oncology to provide recommendations for the use of dipyrone in cancer pain. DESIGN: First, a systematic review for clinical trials assessing dipyrone in adult patients with cancer pain was conducted. Endpoints were pain intensity, opioid-sparing effects, safety, and quality of life. DATA SOURCES: The search was performed in MedLine, Embase (via Ovid), and the Cochrane Library (1948-2013) and additional hand search was conducted. Finally, recommendations were developed and agreed in a formal structured consensus process by 53 representatives of scientific medical societies and 49 experts. RESULTS: Of 177 retrieved studies, 4 could be included (3 randomized controlled trials and 1 cohort study, n = 252 patients): dipyrone significantly decreased pain intensity compared to placebo, even if low doses (1.5-2 g/day) were used. Higher doses (3 × 2 g/day) were more effective than low doses (3 × 1 g/day), but equally effective as 60 mg oral morphine/day. Pain reduction of dipyrone and non-steroidal anti-inflammatory drugs did not differ significantly. Compared to placebo, non-steroidal anti-inflammatory drugs, and morphine, the incidence of adverse effects was not increased. CONCLUSION: Dipyrone can be recommended for the treatment of cancer pain as an alternative to other non-opioids either alone or in combination with opioids. It can be preferred over non-steroidal anti-inflammatory drugs due to the presumably favorable side effect profile in long-term use, but comparative studies are not available for long-term use.

[Living and dying with frailty : Qualitative interviews with elderly people in the domestic environment]. / Leben und Sterben mit Gebrechlichkeit : Qualitative Interviews mit älteren Menschen im häuslichen Umfeld.

BACKGROUND: Frail older people are becoming an increasingly more important target group in healthcare provision. Little is known about patients' views on frailty and its various impacts, especially towards the end of life. This study was carried out to analyze the needs of frail elderly people at the end of life. METHOD: A qualitative, longitudinal case study design was applied and included 31 frail older patients (≥ 70 year) with a Canadian study of health and aging (CSHA) clinical frailty scale (CFS) grade 6/7 from urban and rural areas within the region of Lower Saxony. The analysis was based on guided interviews and followed the principles of grounded theory. RESULTS: From the patients' perspective frailty is perceived as a process of increasing complexity of health problems, increased vulnerability and reduced ability to perform tasks. Frailty is experienced as various deficits including the physical, psychological, social and existential dimensions. Living and dying in a familiar environment and maintaining autonomy was identified as a core category. Key determinants were access to and quality of healthcare services as well as various individual and social resources. CONCLUSION: A palliative biopsychosocial care approach should be established early in the process of frailty, including advance care planning in order to meet the patients' needs of staying in a familiar environment. General practitioners as well as home care nursing personnel have to collaborate in order to balance issues of autonomy with increased care needs and the support of informal carers as key partners towards the end of life.

Caring for frail older people in the last phase of life - the general practitioners' view.

BACKGROUND: Frail older people are an increasingly important group in primary care due to demographic change. For these patients, a palliative care approach may be useful to sustain the quality of life in the last phase of their lives. While general practitioners (GPs) play a key role in the primary care for older patients, general palliative care is still in its infancy and little is known in Germany about caring for frail older people towards the end of life. This study aims to explore the tasks and challenges regarding the care for frail older patients in the last phase of life from the GPs' point of view, and the latter's perception of their own role and responsibilities. METHODS: Explorative qualitative study based on semi-structured in-depth interviews with 14 GPs from urban and rural regions in Lower Saxony, Germany. Analysis was carried out according to the principles of Grounded Theory. RESULTS: The GPs' key commitment "caring for frail older patients until the end" as an integral part of primary care was worked out as a key category, flanked by central issues: "causal conditions and challenges," which include patients' preconditions and care needs as well as communication and cooperation aspects on the carers' level. "Barriers and facilitators within the health system" refers to prerequisites of the German healthcare system, such as high caseloads. Regarding "strategies to comply with this commitment", various self-developed strategies for the care of frail older people are presented, depending on the GPs' understanding of their professional role and individual circumstances. CONCLUSIONS: The GPs show a strong commitment to caring for the frail older patients until the end of life. However, it is a challenging and complex task that requires significant time, which can take GPs to their limits. There is a great need to improve patient-and family-centered proactive communication, as well as interprofessional cooperation. Strengthening the team approach in primary care could relieve the burden on GPs, especially in rural areas, while simultaneously improving end-of-life care for their patients.

End of life care for frail older patients in family practice (ELFOP)--protocol of a longitudinal qualitative study on needs, appropriateness and utilisation of services.

BACKGROUND: Frail elderly people represent a major patient group in family practice. Little is known about the patients' needs, and how their needs evolve over time with increasing frailty towards the end of life. This study will address end-of-life care needs, service utilisation, and experiences of frail elderly patients and their informal caregivers, with regard to family practice. This paper aims to introduce the research protocol. METHODS/DESIGN: The study uses a multiple perspective approach qualitative design. The first study part consists of serial six-monthly in-depth interviews with 30 community-dwelling elderly patients (≥70 years) with moderate to severe frailty and their key informal caregivers, over a period of 18 months. Additionally, semi-structured interviews with the patients' family physician will be conducted. The serial interviews will be analysed with grounded theory and narrative approaches. Special attention will be paid to the comparison of distinct views of the patients', informal caregivers', and family physicians' as well as on chronological aspects. In the second study part, five focus groups with experts in family medicine, geriatrics, palliative medicine, and nursing will be conducted. Finally, the implications for family practice and health care policy will be discussed in an expert workshop. DISCUSSION: To our knowledge, this is the first prospective, longitudinal qualitative study on the needs of elderly patients with advanced frailty towards the end of life in German family practice, which integrates the perspectives of patients, informal caregivers, family physicians and other health professionals. The study will contribute to the understanding of the clinical, psychosocial and information needs of patients and their caregivers, and of respective changes of experiences and needs along the illness/frailty trajectory including the last phase of life. It will provide an empirical basis for improving patient-centred care for this increasingly relevant target group.

[Management of complex medication regimes in chronic illness - challenges and support needs from the health professional's view]. / Bewältigung komplexer Medikamentenregime bei chronischer Erkrankung - Herausforderungen und Unterstützungserfordernisse aus der Sicht der Gesundheitsprofessionen.

While chronic illness are mostly treated with pharmaceutical means, the management of medication regimes in everyday life often remains inadequate, especially for elderly people. In Germany, most efforts to change this situation focus on the role of physicians or pharmacists respectively. In contrast, this study concentrates on home care nurses and posits their potential to improve the management of complex medication regimes. To explore the professional's view 26 expert interviews with representatives of the different healthcare professions were conducted and analysed. The results indicate that regardless of their profession, all interviewees see a need to modify existing medication regimes and share the view that there is a necessity of communicative and educational support of patients. They also agree that improvements in the management of medication require a multi-professional approach and that home care nurses could provide substantial support to chronically ill in managing their daily medication regimes. Nevertheless, the experts also report structural and professional barriers to hinder professionals in meeting these demands. We conclude that an enhancement of nurses' clinical and educational skills is inevitable, if they are to support chronically ill in managing their daily medication regimes in cooperation with other professions.

Quality of end-of-life care in general practice - a pre-post comparison of a two-tiered intervention.

BACKGROUND: General practitioners (GPs) play a crucial role in the provision of end-of-life care (EoLC). The present study aimed at comparing the quality of GPs' EoLC before and after an intervention involving a clinical decision aid and a public campaign. METHODS: The study was part of the larger interventional study 'Optimal care at the end of life' (OPAL) (Innovation Fund, Grant No. 01VSF17028). The intervention lasted 12 months and comprised two components: (1) implementation of the Supportive and Palliative Care Indicators Tool (SPICT-DE™) in general practice and (2) a public campaign in two German counties to inform and connect regional health care providers and stakeholders in EoLC. Participating GPs completed the General Practice End of Life Care Index (GP-EoLC-I) pre- (t0) and post- (t1) intervention. The GP-EoLC-I (25 items, score range: 14-40) is a self-assessment questionnaire that measures the quality of GPs' EoLC. It includes two subscales: practice organisation and clinical practice. Data were analysed descriptively, and a paired t-test was applied for the pre-post comparison. RESULTS: Forty-five GPs (female: 29%, median age: 57 years) from 33 general practices participated in the intervention and took part in the survey at both times of measurement (t0 and t1). The mean GP-EoLC-I score (t0 = 27.9; t1 = 29.8) increased significantly by 1.9 points between t0 and t1 (t(44) = - 3.0; p = 0.005). Scores on the practice organisation subscale (t0 = 6.9; t1 = 7.6) remained almost similar (t(44) = -2.0; p = 0.057), whereas those of the clinical practice subscale (t0 = 21.0; t1 = 22.2) changed significantly between t0 and t1 (t(44) = -2.6; p = 0.011). In particular, items regarding the record of care plans, patients' preferred place of care at the end of life and patients' preferred place of death, as well as the routine documentation of impending death, changed positively. CONCLUSIONS: GPs' self-assessed quality of EoLC seemed to improve after a regional intervention that involved both the implementation of the SPICT-DE™ in daily practice and a public campaign. In particular, improvement related to the domains of care planning and documentation. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register ( DRKS00015108 ; 22/01/2019).

Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE).

Objective: The systematic identification of patients who are at risk of deteriorating and dying is the prerequisite for the provision of palliative care (PC). This study aimed to investigate the feasibility and practicability of the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE) for the systematic identification of these patients in general practice. Methods: In the beginning of 2017, twelve general practitioners (GPs; female n=6) were invited to take part in the study. GPs were asked to apply the SPICT-DE in everyday practice over a period of two months in patients with chronic progressive diseases. Six months after initial assessment, a follow-up survey revealed how the clinical situation of the initially identified patients had changed and which PC actions had been initiated by GPs. In addition, GPs gave feedback on the practicability of SPICT-DE in daily routine. Results: 10 of the 12 GPs (female n=5, median age 46 years, range 38-68) participated in both the two-month assessment period and the follow-up survey. A total of 79 patients (female n=40, median age 79 years, range 44-94) was assessed with the SPICT-DE. Main diagnoses were predominately of cardio-vascular (n=28) or oncological (n=26) origin. Follow-up after six months showed that 38 patients (48%) went through at least one crisis during the course of disease and almost one third (n=26) had died. The majority of GPs (n=7) considered the SPICT-DE to be practical in daily routine and helpful in identifying patients who might benefit from PC. Seven GPs indicated that they would use the SPICT-DE as part of everyday practice. Conclusions: The SPICT-DE seems to be a practical tool supporting the systematic identification of critically ill and dying patients in general practice.

[HA-BeL ("Hausärztliche Begleitung in der letzten Lebensphase"): Systematic development and adjustment of the German version of the General Practice End of Life Care Index]. / Hausärztliche Begleitung in der letzten Lebensphase (HA-BeL): Systematische Entwicklung und Anpassung der deutschsprachigen Version des General Practice End of Life Care Index.

INTRODUCTION: In Germany, no instruments exist to evaluate the practice and organisation of palliative care in general practice. The aim of this project was the systematic development and adjustment of a German version of the General Practice End of Life Care Index (GP-EoLC-I). METHODS: The translation and adaptation process followed the TRAPD model: translation, review, adjudication, pre-test, documentation. The process was completed by a back translation, a first pre-test and a feasibility study with general practitioners. RESULTS: Nine of the ten general practitioners invited took part in the pre-test (56 % female, median age 55 years, range 40-75). The pre-test showed a median processing time of 15minutes. 17 general practitioners (59 % female, median age 53 years, range 39-69) took part in the pilot study. Adaptation to the German context was necessary for two of the 25 items. In the pre-test and in the pilot study only single values were missing. With the exception of the two adapted items, the back translation showed a high level of consistency with the original version of the questionnaire. DISCUSSION: The systematic development and testing of the questionnaire "Hausärztliche Begleitung in der letzten Lebensphase" (HA-BeL) as well as its adaptation for the primary care setting in Germany was successfully completed in a multi-stage process using an interdisciplinary and participatory approach. The results of this empirical testing provide guidance for expenditure and reasonableness, objectivity of application and content-related consistency of the HA-BeL index. CONCLUSION: The HA-BeL index is the first self-assessment instrument to be used by general practitioners to evaluate practice and organisation of palliative care in general practice in Germany.

GPs' perspective on End-of-Life Care - an evaluation based on the German version of the General Practice End of Life Care Index.

Objective: General practitioners (GPs) play a key role in the provision of general outpatient palliative care (AAPV) for the majority of patients at the end of life. The aim of this study was to evaluate the quality of End-of-Life Care (EoLC) from a GPs' perspective using the German version of the General Practice End of Life Care Index (GP-EoLC-I). Methods: Between autumn 2018 and spring 2019, all registered and eligible GPs in two counties in Lower Saxony (n=190) were asked to participate in a survey on EoLC using the German version of the self-assessment questionnaire GP-EoLC-I. The index comprises two subscales: clinical care (13 items) and practice organisation (12 items). The summated index of both subscales measures the quality of EoLC by GPs (25 items; range 14-40). The questionnaire was supplemented by questions on sociodemographic data, indicators for good palliative care (PC) and requirements to improve PC. Quantitative data were analysed by descriptive statistics and free text answers by conventional content analysis according to Hsieh and Shannon. Results: 52 GPs (females: n=16) of 34 practices (single practices: n=26) participated in the study. The mean GP-EoLC-I was 27.5 (SD 4.5). The items revealed potential for improvement: systematic identification of patients with potential PC needs, multidisciplinary case conferences to discuss PC patients, application of care protocols and symptom assessment tools, documentation of patients' wishes and beliefs as well as inclusion of family and carers. Regarding the indicators for good PC, the most relevant indicators from the GPs' perspective were collaboration and coordination, integration of relatives, advance care planning and documentation. As requirements to improve PC, GPs highlighted further training and the use of standardised tools such as instruments to support the systematic identification of PC patients. Conclusions: To our knowledge for the first time in Germany, an internationally tested self-assessment questionnaire measuring the quality of EoLC by GPs was applied. The GP-EoLC-I in this study was slightly lower than the index of GPs in the United Kingdom. Including relatives and family carers, implementing tools to support early identification of PC patients and strengthening cooperation between GPs and other stakeholders in PC may be promising approaches to improve general PC and EoLC in Germany.