End-of-life care in Germany between 2016 and 2020 - A repeated cross-sectional analysis of statutory health insurance data.

BACKGROUND: The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. OBJECTIVE: The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. METHODS: Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016-2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. RESULTS: Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p = .077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p < .001), whereas the number of patients receiving specialist outpatient PC increased from 8.5% (2016) to 11.2% (2020; p < .001). The onset of generalist outpatient PC moved from 106 (2016) to 93 days (2020; p < .001) before death, on average. The onset of specialist outpatient PC showed the reverse pattern (2016: 55 days before death; 2020: 59 days before death; p = .041). CONCLUSION: Despite growing needs for PC at the end of life, the number of patients receiving outpatient PC did not increase between 2016 and 2020. Furthermore, specialist outpatient PC is being increasingly prescribed over generalist outpatient PC. Although the early initiation of outpatient PC has been proven valuable for the majority of people at the end of life, generalist outpatient PC was not initiated earlier in the disease trajectory over the study period, as was found to be true for specialist outpatient PC. Future studies should seek to determine how existing PC needs can be optimally met within the outpatient sector and identify factors that can support the earlier initiation of especially generalist outpatient PC. TRIAL REGISTRATION: The study "Optimal Care at the End of Life" was registered in the German Clinical Trials Register (DRKS00015108; 22 January 2019).

Consensus-based recommendations for the development and expansion of palliative day care clinics in Germany: results of a Delphi study.

BACKGROUND: Needs-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy. A national Delphi study was conducted to generate appropriate recommendations for the establishment and development of palliative day care clinics in Germany. METHODS: Recommendations were formulated from focus group data on the development and expansion of palliative day care clinics in Germany. Experts on in- and outpatient palliative care rated 28 recommendations for relevance and feasibility, respectively, using a 4-point Likert-type scale. Suggestions for improvement were captured via free text comments. Items were considered consented when more than 80% of the experts scored them 4 (strongly agree) or 3 (somewhat agree), regarding both relevance and feasibility. RESULTS: A total of 23 experts (32% response rate) completed three Delphi rounds. Following the first round, 10 of 28 recommendations were revised according to participants' comments; 1 recommendation was rejected. After the second round, 3 of these 10 recommendations were revised, while 3 were rejected. Consensus was achieved after the third round for 22 of the initial recommendations. CONCLUSIONS: The Delphi-consented recommendations provide a basis for the targeted evidence- and needs-based development of palliative day care clinics. The findings show a need for standards setting and the meaningful integration of these clinics into existing structures. TRIAL REGISTRATION: The present study was prospectively registered on April 20, 2020, with the German Clinical Trials Register (DRKS00021446).

Bereavement Counsellors' Experiences Supporting the Families of Deceased Children Within a German Bereavement Network- A Qualitative Interview Study.

Background: The "Bereavement Network Lower Saxony" (BNLS) provides professional bereavement support to families grieving for a child. The present study aimed at exploring the experiences of BNLS bereavement counsellors in providing bereavement support to affected families. Methods: 12 semi-structured qualitative interviews were conducted with bereavement counsellors of the BNLS between June and August 2022. Interviews were recorded, transcribed and analysed using qualitative content analysis, according to Mayring (2010). Results: Bereavement counsellors perceived that grief could be experienced very differently, and thus bereavement support must always be based on the individual needs and resources of bereaved family members. Bereavement counsellors appreciated exchange within the network and supervision to cope with emotional load that arises from compassion for those affected. Conclusions: Bereavement support within a network structure may improve the accessibility of individual support and enable exchange between counsellors, thus ensuring better bereavement support. Public outreach and strategic partnerships with clinics may amplify the positive impact of this support service.

"Has Anyone Been There Now?": An Interview Study on the Support Experiences and Unmet Needs of Informal Long-Distance Caregivers for Patients at the End of Life.

In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

Supporting Bereaved Family Members: A Qualitative Interview Study on the Experience of Bereavement Counselling by the Bereavement Network Lower Saxony (BNLS) in Germany for Parents Who Have Lost Children or Teenagers.

The "Trauer Netzwerk Niedersachsen" ("Bereavement Network Lower Saxony" (BNLS)) aims at supporting families after the loss of a child or teenager due to various causes. This study aims to describe the experiences of bereaved family members with the BNLS counsellors. 12 semi-structured interviews were conducted with parents who had received or were currently receiving BNLS counselling. The interviews revealed the vital role counselling played aiding individuals cope with their grief. Participants valued the bereavement support, which was often lacking in their personal support networks. Counselling assisted parents in returning to daily life and caring for loved ones. Discussing "death" and "dying" helped participants find peace with their loss. Our findings suggest that bereavement counselling should be considered an essential component of healthcare for family members dealing with the loss of a child. Additionally, there is need for awareness and publicity for both the BNLS and its bereavement counselling services.

Implementation, barriers, and recommendations for further development of advance care planning for the last phase of life in nursing homes in Germany (Gut-Leben): protocol for a mixed-methods study.

BACKGROUND: Nursing home entry often marks the transition into the end-of-life. In 2018, Germany legally introduced reimbursement for advance care planning (ACP according to § 132 g SGB V) in nursing homes that applied for ACP approval to improve end-of-life care. The Gut-Leben project aims to evaluate the implementation and barriers of ACP in nursing homes in Germany, with a special focus on the federal state of Lower Saxony, and provide practical recommendations for further development of end-of-life care. METHODS: This mixed-methods study spreads across five work packages (WP) over a three-year period. WP 1 will explore the approval process, implementation, and barriers to ACP in nursing homes. Data will be collected through a national postal survey in a random sample of n = 600. WP 2 will explore whether documented ACP reports are applicable as a data source for research (expecting up to 500 available ACP reports). In WP 3a and 3b, data on the ACP process will be collected in n = 15 approved nursing homes in Lower Saxony over a 12-months period. For WP 3a and WP 3b, data on ACP conversations (n = 600) and on end-of-life care paths (n = 300) will be collected by facilitators and nurses of the respective nursing homes. In WP 4, residents' characteristics upon entry and changes in these characteristics over the length of stay are analyzed, utilizing claims data from the AOK Lower Saxony (expected sample of about 100,000 people entering nursing homes over a 10-years period). WP 5 connects, interprets, and reflects on the findings from WP 1-4 through focus groups and individual interviews with facilitators, nursing staff, residents, relatives, and care providers. Within a participatory approach, a practice advisory board will be set up existing of personal of nursing homes and will be closely involved in the whole research process. DISCUSSION: In summary, the Gut-Leben project provides insight into the implementation and barriers of ACP in nursing homes according to German legislation for the first time, including practitioners' and residents' perspectives. Insights will help the further development of ACP in Germany through practical recommendations based on quantitative and qualitative data.

'She Can't Support Me Because She's so Old': A Mixed-Methods Study of Support Experiences and Needs in Adult Child-Parent Dyads at the End of Life.

Little is known about support experiences and needs in the dyads of (1) terminally ill adult children and their parent caregivers and (2) terminally ill parents and their adult child caregivers. The current study aimed at investigating the experiences and needs of adult children and parents in end of life situations regarding their provision and receipt of support. The study employed a convergent parallel mixed-methods design, combining explorative qualitative interviews with the quantitative self-report Berlin Social Support Scales. Sixty-five patients (dyad 1: 19; dyad 2: 46) and 42 family caregivers (dyad 1: 13; dyad 2: 29) participated in the study (02/2018-11/2019). Results show that ill adult children felt less (well) supported than ill parents. Parent caregivers were often limited in the support they could provide, due to their age and health conditions. Hypotheses were deduced from patients' and family caregivers' notions to inform dyad-specific recommendations for support interventions.

Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany.

PURPOSE: The availability of psychosocial support measures has a significant impact on the quality of life of terminally ill and dying patients and the burden experienced by their relatives. To date, no intervention has specifically focused on promoting interaction within the dyads of the following: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. A national Delphi study was conducted to provide appropriate recommendations for dyadic psychosocial support measures. METHODS: Recommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility. RESULTS: A total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants' comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations. CONCLUSION: The Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent-adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research. This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206).

Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany.

BACKGROUND: Of the approximately 4.7 million people in Germany caring for a relative, many live at a geographical distance from their loved one. The provision of remote care to a terminally ill patient is associated with specific challenges and burdens. In the German context, research is lacking on the specific experiences and needs of caregivers in end-of-life situations who are geographically distanced from their relative. Thus, the overarching goal of the proposed study is to detail the specifics of long-distance caregiving at the end of life in Germany, determining the role played by physical distance in shaping end-of-life caregiving and identifying the needs of long-distance caregivers in this situation. METHODS: The exploratory qualitative study will be guided by an inductive logic, drawing on one-time semi-structured interviews. To uncover the multiplicity of caregiving experiences, long-distance caregivers of both patients receiving early palliative care and patients at a very advanced stage of disease will be included. The study will be divided into five phases: (1) preparation and pretest, (2) data collection and primary analysis, (3) data analysis and interpretation, (4) advisory board workshop and (5) conclusions and recommendations. DISCUSSION: The study will aim at generating valuable insight regarding the experiences and needs of family caregivers of end-of-life patients. This is particularly relevant, given that families are becoming increasingly geographically dispersed. As this trend continues, it will challenge traditional models of family care and shed light on novel caregiving issues that will need to be addressed through social and health policy. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00024164; date of registration: January 25, 2021), and is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

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).

Perceived stress and study-related behavior and experience patterns of medical students: a cross-sectional study.

BACKGROUND: Distress and burnout are common in physicians. Both may already arise during medical training and persist throughout residency. An analysis of needs is necessary in order to develop target group specific curricular concepts at medical faculties. Aim of this study was to assess the perceived stress of medical students, to explore study-related behavior and experience patterns, and to investigate associated factors. METHODS: We conducted a cross-sectional survey of medical students at the Hannover Medical School. The web-based questionnaire consisted of 74 items and included two standardized instruments: the "Work-related Behavior and Experience Patterns" (Arbeitsbezogene Verhaltens- und Erlebensmuster, AVEM) and the "Perceived Medical School Stress" scale (PMSS). Students were asked to state their self-perceived actual stress level on a scale from 0% (no stress at all) to 100% (maximum stress). We performed a classification and regression tree (CART) analysis to identify factors that can discriminate between the four different AVEM patterns. RESULTS: Five hundred ninety-one medical students (female 75.8%, response rate: 34.0%) participated in the survey. The mean sum score of the PMSS was 37.2 (SD 8.3; median score 37, min.-max. = 18-65). Overall, 68.5% of the students showed a risk pattern (risk pattern A "overexertion": 38.9%; risk pattern B "burnout": 29.6%). Pattern G "healthy" was shown in 8.3% and pattern S "protection" in 23.1% of the students. Multilevel analysis revealed that the self-perceived stress level and the PMSS sum score were the most important predictors for the AVEM pattern assignment. Furthermore, academic year, gender, and financial dependency were relevant influencing factors: students in higher academic years with no financial support had a higher probability to be in risk pattern B whereas male students in the first academic year tended to be in pattern G. CONCLUSIONS: The PMSS sum score could objectify medical students' high self-perceived stress level. The majority of participating students showed a risky study-related behavior and experience pattern. Medical faculties should be aware of the still existing and relevant problem of stress and burnout among medical students. Our results lay the groundwork for an evaluation and further development of medical curricula at the own faculty.

'Mums are sacred, and mums don't die': A mixed-methods study of adult child-parent dyadic relationships at the end of life.

OBJECTIVES: The aim of the present study was to report the specific challenges pertaining to the experiences and needs of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, regarding their relationship and relationship roles. The study sought to identify similar and differing relationship patterns between the two dyadic types. DESIGN: This prospective observational study used an exploratory mixed-methods approach. PARTICIPANTS: Patients and caregivers were recruited (Feb. 2018 - Nov. 2019) via general and specialist palliative care providers in Germany. METHODS: The study combined semi-structured interviews with quantitative questionnaires covering socio-demographic details, attachment style and emotional intimacy. FINDINGS: A total of 65 patients and 42 family caregivers participated in the study. Interview data indicate that illness situation and dependencies were perceived in both dyads to represent a relationship role reversal contrary to the 'natural order'. With respect to dyad 1, adult children stressed their need for autonomy, whereas caregiving parents strived for greater intimacy in the relationship. Within dyad 2, terminally ill parents and adult children experienced a new relationship intensity. Questionnaire data showed that emotional intimacy was perceived by patients in both dyads and adult child caregivers as significantly higher in the current illness situation compared to the pre-illness situation. CONCLUSIONS: This was the first study to contribute to an understanding of the different needs of terminally ill adult children/parents and their parent/adult child caregivers, thus contributing to an understanding of the different needs of these parties, both within and between the dyadic forms. The results suggest that the dyads share similar themes, which should be integrated into general support interventions; however, some themes appear more relevant for one dyad, only. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: For both dyads, we recommend psychological counseling to support open communication and understanding between parties.

Communication in dyads of adult children at the end of life with their parents and parents at the end of life with their adult children: Findings from a mixed-methods study.

OBJECTIVE: Patient-family member communication plays a decisive role in coping with an end-of-life situation and is strongly influenced by the dyadic relationship. There is a lack of research exploring and comparing the specifics of communication between (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. The present study aimed at describing and comparing communication specifics within these two dyads. METHODS: As part of the research project Dy@EoL on parent-adult child interactions, this mixed-methods study combined qualitative interviews and the Berlin Social Support Scales self-report questionnaire. Participants in both dyads were recruited via 12 inpatient and ambulatory palliative/hospice care providers between February 2018 and September 2019. RESULTS: Participants included 65 patients (dyad 1: 19; dyad 2: 46) and 42 family members (dyad 1: 13; dyad 2: 29). Qualitative interviews revealed communication changes in the terminal illness situation and provided insight into each dyad partner's perception of openness and avoidance in the dyadic communication. The quantitative results showed that patients in both dyads provided significantly less informational support relative to family members. A strong similarity present in both dyads was the central motivation for limiting information sharing. CONCLUSIONS: Individual preferences for information sharing suggest that the divergent needs of dyad partners must be carefully negotiated to ensure that patients are able to address important topics without putting too great an emotional burden on their family members. Tailored psychosocial support measures are needed to achieve this goal. The study was registered prospectively in the German Clinical Trials Register (registration N° DRKS00013206).

Exploring the status of and demand for palliative day-care clinics and day hospices in Germany: a protocol for a mixed-methods study.

BACKGROUND: To date, the establishment and development of palliative day-care clinics and day hospices in Germany have been completely unsystematic. Research is needed to gain insight into these services and to ensure their accessibility and quality. Accordingly, the ABPATITE research project aims at: (1) identifying the characteristics of palliative day-care clinics and day hospices in Germany, (2) determining demand and preferences for these services, and (3) proposing recommendations (with expert agreement) for the needs-based establishment and development of these services. METHODS: The research is a multi-perspective, prospective, observational study following a mixed-methods approach across three study phases. In phase 1a, qualitative expert interviews will be conducted to capture the facility-related characteristics of palliative day-care clinics and day hospices in Germany; the results will feed into a questionnaire sent to all such institutions identified nationwide. In phase 1b, a questionnaire will be sent to local statutory health insurance providers, to gain insight into their contracts and accounting and remuneration models. In phase 2a, a service preference survey will be conducted with patients and family caregivers. In phase 2b, semi-structured interviews with management staff will explore the factors that promote and hinder the provision of service. In phase 2c, the external perspective will be surveyed via focus groups with local actors involved in hospice and palliative care. In phase 3a, focus groups with representatives from relevant areas will be conducted to develop recommendations. Finally, in phase 3b, recommendations will be agreed upon through a Delphi survey. DISCUSSION: The empirically developed recommendations should enable the establishment and development of day hospices and palliative day-care clinics in Germany to be better managed, more oriented to actual demand, and more effectively integrated into wider health care services. Importantly, the findings are expected to optimize the overall development of hospice and palliative care services. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00021446; date of registration: April 20, 2020). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

Assessment of the quality of end-of-life care: translation and validation of the German version of the "Care of the Dying Evaluation" (CODE-GER) - a questionnaire for bereaved relatives.

BACKGROUND: International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the "Care of the Dying Evaluation" (CODE) into German (CODE-GER). METHODS: Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient's death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0-10). RESULTS: Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = -.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low. CONCLUSION: The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research. TRIAL REGISTRATION: This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register ( DRKS00013916 ).

Correction to: The quality of care of the dying in hospital-next-of-kin perspectives.

The surname and name of Christoph (name) Ostgathe (surname) are reversed.

The quality of care of the dying in hospital-next-of-kin perspectives.

PURPOSE: Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care. METHODS: The "Care of the Dying Evaluation" (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin, allocating values between 0 (low quality) and 4 (high quality). The total score (0-104) is divided into subscales which indicate support/time given by doctors/nurses, spiritual/emotional support, information/decision-making, environment, information about the dying process, symptoms, and support at the actual time of death/afterwards. Next-of-kin of patients with an expected death in specialized palliative care units and other wards in two university hospitals between April 2016 and March 2017 were included. RESULTS: Most of the 237 analyzed CODE-GER questionnaires were completed by the patient's spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3-276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25-104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process. CONCLUSION: The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed. TRIAL REGISTRATION: DRKS00013916.

'. . . and then no more kisses!' Exploring patients' experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study.

BACKGROUND: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. OBJECTIVES: To integrate patients' perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms' diagnosis, protection and isolation measures on their well-being and patients' wishes and needs regarding their care. DESIGN: A mixed-methods convergent parallel design embedded quantitative data on the patients' multidrug-resistant bacterial microorganisms' trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. SETTING/PARTICIPANTS: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. RESULTS: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms' diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients' quality of life. Patients' wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. CONCLUSION: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms' diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms' policies of hospitals.

Quality indicators for the evaluation of end-of-life care in Germany - a retrospective cross-sectional analysis of statutory health insurance data.

BACKGROUND: The provision and quality of end-of-life care (EoLC) in Germany is inconsistent. Therefore, an evaluation of current EoLC based on quality indicators is needed. This study aims to evaluate EoLC in Germany on the basis of quality indicators pertaining to curative overtreatment, palliative undertreatment and delayed palliative care (PC). Results were compared with previous findings. METHODS: Data from a statutory health insurance provider (AOK Lower Saxony) pertaining to deceased members in the years 2016 and 2017 were used to evaluate EoLC. The main indicators were: chemotherapy for cancer patients in the last month of life, first-time percutaneous endoscopic gastrostomy (PEG) for patients with dementia in the last 3 months of life, number of hospitalisations and days spent in inpatient treatment in the last 6 months of life, and provision of generalist and specialist outpatient PC in the last year of life. Data were analysed descriptively. RESULTS: Data for 64,275 deceased members (54.3% female; 35.1% cancer patients) were analysed. With respect to curative overtreatment, 10.4% of the deceased with cancer underwent chemotherapy in the last month and 0.9% with dementia had a new PEG insertion in the last 3 months of life. The mean number of hospitalisations and inpatient treatment days per deceased member was 1.6 and 16.5, respectively, in the last 6 months of life. Concerning palliative undertreatment, generalist outpatient PC was provided for 28.0% and specialist outpatient PC was provided for 9.0% of the deceased. Regarding indicators for delayed PC, the median onset of generalist and specialist outpatient PC was 47.0 and 24.0 days before death, respectively. CONCLUSION: Compared to data from 2010 to 2014, the data analysed in the present study suggest an ongoing curative overtreatment in terms of chemotherapy and hospitalisation, a reduction in new PEG insertions and an increase in specialist PC. The number of patients receiving generalist PC remained low, with delayed onset. Greater awareness of generalist PC and the early integration of PC are recommended. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register ( DRKS00015108 ; 22 January 2019).