Palliative care and new technologies. The use of smart sensor technologies and its impact on the Total Care principle.

BACKGROUND: Palliative care is an integral part of health care, which in term has become increasingly technologized in recent decades. Lately, innovative smart sensors combined with artificial intelligence promise better diagnosis and treatment. But to date, it is unclear: how are palliative care concepts and their underlying assumptions about humans challenged by smart sensor technologies (SST) and how can care benefit from SST? AIMS: The paper aims to identify changes and challenges in palliative care due to the use of SST. In addition, normative guiding criteria for the use of SST are developed. METHODS: The principle of Total Care used by the European Association for Palliative Care (EAPC) forms the basis for the ethical analysis. Drawing on this, its underlying conceptions of the human and its socio-ethical aspects are examined with a phenomenological focus. In the second step, the advantages, limitations, and socio-ethical challenges of using SST with respect to the Total Care principle are explored. Finally, ethical-normative requirements for the application of SST are derived. RESULTS AND CONCLUSION: First, SST are limited in their measurement capabilities. Second, SST have an impact on human agency and autonomy. This concerns both the patient and the caregiver. Third, some aspects of the Total Care principle are likely to be marginalized due to the use of SST. The paper formulates normative requirements for using SST to serve human flourishing. It unfolds three criteria according to which SST must be aligned: (1) evidence and purposefulness, (2) autonomy, and (3) Total Care.

Palliative care as a digital working world (PALLADiUM) - A mixed-method research protocol.

BACKGROUND: In Palliative Care, actors from different professional backgrounds work together and exchange case-specific and expert knowledge and information. Since Palliative Care is traditionally distant from digitalization due to its holistically person-centered approach, there is a lack of suitable concepts enabling digitalization regarding multi-professional team processes. Yet, a digitalised information and collaboration environment geared to the requirements of palliative care and the needs of the members of the multi-professional team might facilitate communication and collaboration processes and improve information and knowledge flows. Taking this chance, the presented three-year project, PALLADiUM, aims to improve the effectiveness of Palliative Care teams by jointly sharing available inter-subjective knowledge and orientation-giving as well as action-guiding practical knowledge. Thus, PALLADiUM will explore the potentials and limitations of digitally supported communication and collaboration solutions. METHODS: PALLADiUM follows an open and iterative mixed methods approach. First, ethnographic methods - participant observations, interviews, and focus groups - aim to explore knowledge and information flow in investigating Palliative Care units as well as the requirements and barriers to digitalization. Second, to extend this body, the analysis of the historical hospital data provides quantitative insights. Condensing all findings results in a to-be work system. Adhering to the work systems transformation method, a technical prototype including artificial intelligence components will enhance the collaborative teamwork in the Palliative Care unit. DISCUSSION: PALLADiUM aims to deliver decisive new insights into the preconditions, processes, and success factors of the digitalization of a medical working environment as well as communication and collaboration processes in multi-professional teams. TRIAL REGISTRATION: The study was registered prospectively at DRKS (Deutsches Register Klinischer Studien) Registration-ID: DRKS0025356 Date of registration: 03.06.21.

Interrater agreement of multi-professional case review as reference standard for specialist palliative care need: a mixed-methods study.

BACKGROUND: A wide variety of screening tools for the need for specialist palliative care (SPC) have been proposed for the use in oncology. However, as there is no established reference standard for SPC need to compare their results with, their sensitivity and specificity have not yet been determined. The aim of the study was to explore whether SPC need assessment by means of multi-professional case review has sufficient interrater agreement to be employed as a reference standard. METHODS: Comprehensive case descriptions were prepared for 20 inpatients with advanced oncologic disease at the University Hospital Freiburg (Germany). All cases were presented to the palliative care teams of three different hospitals in independent, multi-professional case review sessions. The teams assessed whether patients had support needs in nine categories and subsequently concluded SPC need (yes / no). Interrater agreement regarding SPC need was determined by calculating Fleiss' Kappa. RESULTS: In 17 out of 20 cases the three teams agreed regarding their appraisal of SPC need (substantial interrater agreement: Fleiss' Kappa κ = 0.80 (95% CI: 0.55-1.0; p < 0.001)). The number of support needs was significantly lower for patients who all teams agreed had no SPC need than for those with agreed SPC need. CONCLUSIONS: The proposed expert case review process shows sufficient reliability to be used as a reference standard. Key elements of the case review process (e.g. clear definition of SPC need, standardized review of the patients' support needs) and possible modifications to simplify the process are discussed. TRIAL REGISTRATION: German Clinical Trials Register, DRKS00021686, registered 17.12.2020.

Expert-approved best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care (SedPall).

BACKGROUND: The use of sedative drugs and intentional sedation in end-of-life care is associated with clinical, ethical and legal challenges. In view of these and of the issue's great importance to patients undergoing intolerable suffering, we conducted a project titled SedPall ("From anxiolysis to deep continuous sedation - Development of recommendations for sedation in palliative care") with the purpose of developing best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care and obtaining feedback and approval from experts in this area. DESIGN: Our stepwise approach entailed drafting the recommendations, obtaining expert feedback, conducting a single-round Delphi study, and convening a consensus conference. As an interdisciplinary group, we created a set of best practice recommendations based on previously published guidance and empirical and normative analysis, and drawing on feedback from experts, including patient representatives and of public involvement participants. We set the required agreement rate for approval at the single-round Delphi and the consensus conference at ≥80%. RESULTS: Ten experts commented on the recommendations' first draft. The Delphi panel comprised 50 experts and patient and public involvement participants, while 46 participants attended the consensus conference. In total, the participants in these stages of the process approved 66 recommendations, covering the topics "indications", "intent/purpose [of sedation]", "decision-making", "information and consent", "medication and type of sedation", "monitoring", "management of fluids and nutrition", "continuing other measures", "support for relatives", and "team support". The recommendations include suggestions on terminology and comments on legal issues. CONCLUSION: Further research will be required for evaluating the feasibility of the recommendations' implementation and their effectiveness. The recommendations and the suggested terminology may serve as a resource for healthcare professionals in Germany on the use of sedative drugs and intentional sedation in specialist palliative care and may contribute to discussion on the topic at an international level. TRIAL REGISTRATION: DRKS00015047 (German Clinical Trials Register).

COVID-19: Challenges and solutions for the provision of care to seriously ill and dying people and their relatives during SARS-CoV-2 pandemic - perspectives of pandemic response team members: A qualitative study on the basis of expert interviews (part of PallPan).

BACKGROUND: During the SARS-CoV-2 pandemic's initial waves, bans on visiting and isolation measures placed limits on providing services for seriously ill and dying people and their relatives. Pandemic response teams at governmental level (macro), at federal state and municipal level (meso) and in healthcare facilities (micro) played their role in pandemic management procedures. AIM: To explore pandemic-related challenges and solutions of pandemic response teams regarding the provision of care to seriously ill and dying people and their relatives. Findings were to be integrated into a national strategy (PallPan). DESIGN: Semi-structured expert interviews (10/2020-2/2021) analysed via structured content analysis. SETTINGPARTICIPANTS: We interviewed 41 members, who discussed the work of 43 German pandemic response teams (micro n = 23; meso n = 20; no members were available at macro level) from 14 German federal states. RESULTS: Twenty-nine of 43 teams took account of the needs of seriously ill and dying. Their main challenges resulted from pandemic-related legal requirements in hospitals and long-term care facilities. The implementation of such was in the remits of the meso level. Dysfunctional or non-existent communication between the levels was reported to be challenging. To foster patient-related solutions the micro level pandemic response teams supported individual decisions to enable patient-relative contact for example, visiting and saying goodbye outside, meeting via digital solutions. CONCLUSIONS: Pandemic response teams evidently struggled to find appropriate solutions to ease pandemic-related impact on the care of seriously ill and dying patients and their relatives. We recommend bringing palliative care expertise on board.

Development of a national strategy with recommendations for the care of seriously ill and dying people and their relatives in pandemics: A modified Delphi study.

BACKGROUND: The SARS-CoV-2 pandemic is a constant challenge for health care systems, also in Germany. Care of seriously ill and dying people and their relatives is often neglected and suffering increased due to sub-optimal symptom management, visiting restrictions and lonely dying. The project "Palliative Care in Pandemics (PallPan)" intended to develop a national strategy including evidence- and consensus-based recommendations for the care of seriously ill and dying people and their relatives during pandemic times in Germany. AIM: To reach consensus on evidence-based recommendations for the care of seriously ill and dying people and their relatives in pandemics. METHODS: Three-step consensus process comprising two online Delphi rounds and an expert workshop conducted from April to June 2021. One hundred twenty experts from various areas of healthcare, administration, and politics in Germany were included. RESULTS: During the consensus-process, pre-formulated evidence-based recommendations were refined step-by-step. This resulted in consensus on 33 recommendations on the topics of "supporting patients and their relatives," "supporting staff," and "supporting and maintaining structures and provision of palliative care." The recommendations address professional carers and various responsibilities on a governmental, federal state and municipal level, and in healthcare facilities. CONCLUSION: We provide evidence and consensus-based recommendations for the care of seriously ill and dying people and their relatives in pandemics in Germany. This is an important step towards a pandemic preparedness and hopefully improves the future palliative care response to pandemics.

Possible age-related differences in healthcare professionals' perspectives on younger and older patients' autonomy and decision-making in the context of sedation in specialised palliative care: exploratory secondary qualitative content and linguistic conversation analysis of interviews with healthcare professionals.

BACKGROUND: Chronic illnesses and multi-morbidity can threaten competence and independence, particularly in old age. Autonomy becomes increasingly important in the context of sedation, as in this case medication leads to (further) changes of consciousness. The study aimed to identify possible age-related differences in the perspectives of healthcare professionals on patients' autonomy, in the context of sedation in specialised palliative care. METHOD: Secondary analysis of interviews with healthcare professionals, analysed by qualitative content and linguistic conversation analysis. The interviews analysed span 51 healthcare professionals in specialised palliative care across 17 centres (adult inpatient and specialist palliative home care services) in Germany. RESULTS: The study shows that the perspectives of healthcare professionals on patients' autonomy differs according to the age of the patient in the context of sedation in specialised palliative care. The different perspectives may lead to different ways of treating the patients, for example a greater space of autonomy and decision-making for younger patients. CONCLUSION: In particular, measures that may restrict consciousness (e.g. sedation) and thus influence patients' ability to fully exercise their autonomy and fully participate in decision-making require special attention by healthcare professionals with respect to possible influences on treatment, such as different perceptions by healthcare professionals based on the patient's age or age-related stereotypes. TRIAL REGISTRATION: The study "SedPall" is registered in the German Clinical Trials Register (ID: DRKS00015047 ).

[Health- and disease-related data of inpatients in palliative care units of the Comprehensive Cancer Centers and other hospitals in comparison-Data from the Hospice and Palliative Care Register]. / Gesundheits- und krankheitsbezogene Daten von Patienten auf Palliativstationen der onkologischen Spitzenzentren und anderer Krankenhäuser im Vergleich ­ Daten aus dem Hospiz- und Palliativregister.

BACKGROUND: The National Hospice and Palliative Registry is a database for palliative care facilities documenting a core data set for quality assurance and scientific evaluations. OBJECTIVES: The study aims identifying differences between patients in palliative care units treated in Comprehensive Cancer Centers (CCC) or other hospitals (OH) focussing on sociodemographic and health/disease-related characteristics. METHODS: Descriptive data analysis using IBM SPSS Statistics 21 included patients treated from 2014 to 2018. Comparisons included sociodemographic data, diagnoses, ECOG status and treatment duration. RESULTS: 12,922 patient data were analyzed (CCC n = 4975/OH = 7947). In CCCs 79.8% had a tumor diagnosis, in other hospitals 85.1%. The proportion of patients with ECOG 4 was higher in CCCs than in other hospitals. The average length of stay in CCCs was 12.6 days, in other hospitals 11.3 days (p = 0.023). CONCLUSIONS: Data show differences between patients in palliative care implicating CCCs treating more complex palliative care patients than other hospitals.

[COVID-19 pandemic response teams: organization, competencies, and challenges-understanding and using structural realities]. / COVID-19-Pandemiekrisenstäbe: Organisation, Befugnisse und Herausforderungen ­ Strukturelle Gegebenheiten verstehen und nutzen.

BACKGROUND AND AIM: Germany has a federal state system. Pandemic response teams are key instruments of pandemic management. The aim of this article is to describe the structures and powers of pandemic response teams that were explored during a study on the care of the critically ill and dying in times of a pandemic (PallPan). The focus is on health-related pandemic response teams on the national state level (macrolevel) and federal and community level (mesolevel) as well as pandemic response teams in healthcare facilities (microlevel). METHODS: Members of pandemic response teams took part in qualitative semi-structured interviews (October 2020-February 2021). The evaluation was carried out by means of qualitative structuring content analysis. RESULTS: Forty-two persons reported on 43 crisis teams from 14 federal states. Response teams in healthcare facilities and public administration differ primarily with regard to their competencies. Officially predetermined regulations regarding the initiation, personal composition, tasks, responsibilities, and competencies of pandemic response teams are not predefined in Germany. The macrolevel defined the legal and financial conditions for pandemic management. Meso- and microlevel pandemic response teams bear responsibility for maintaining the provision of healthcare. The defaults of local public health authorities are decisive for the pandemic response team's work. Main tasks and measures were the provision of information and the procurement and distribution of resources. DISCUSSION: In terms of preparing for future pandemic situations, the knowledge gained will help to address concerns about maintaining healthcare for specific population groups, such as seriously ill and dying people, to the locally differing responsible bodies, even under pandemic conditions.

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.

Standard Operating Procedures (SOPs) for Palliative Care in German Comprehensive Cancer Centers - an evaluation of the implementation status.

BACKGROUND: The working group for palliative medicine within the Comprehensive Cancer Center (CCC) network funded by the German Cancer Aid in Germany has developed and published 14 Standard Operating Procedures (SOPs) for palliative care in CCCs. This study analyzed to what extent these SOPs have been implemented in the clinical routine in the CCC network one year after their publication. METHODS: An online-based survey on the implementation status, limitations in daily practice and further themes was conducted between April and July 2018. In total, 125 health professionals in specialized palliative care from all 16 CCC locations were invited to participate. The data were analyzed descriptively using SPSS. RESULTS: The response rate was 52.8%. More than half of the respondents (57.6%) knew about the free availability of SOPs on the CCC network website. The extent to which each SOP was being used actively in practice by the survey respondents ranged from a low of 22.7% (for the "Fatigue" SOP) to a highest of 48.5% (for the "Palliative Sedation" and "Respiratory Distress" SOPs). The respondents became aware of the SOP through recommendations from colleagues, team meetings or from the head of the department. The SOPs "Respiratory distress of an adult palliative patient" and "Palliative sedation" were perceived as the most practically oriented and understandable. Barriers to use SOPs were mainly limited time resources and lack of knowledge of existence and availability. CONCLUSIONS: In practice, better knowledge about the SOPs and at the same time increased use can be achieved through systematic training or discussion of SOPs in regular team meetings. There is a need to take measures to optimize the implementation in clinical practice.

Identifying the need for specialized palliative care in adult cancer patients - development and validation of a screening procedure based on proxy assessment by physicians and filter questions.

BACKGROUND: One challenge in caring for cancer patients with incurable disease is the adequate identification of those in need for specialized palliative care (SPC). The study's aim was to validate an easy to use phenomenological screening tool. METHODS: The German tool is based on the National Comprehensive Cancer Network (NCCN) Palliative Care guidelines and contains ten items in five domains that focus e.g. on diagnosis, functional status, complications, comorbidities, and palliative care relevant problems such as symptom management, distress, and support of family and team members. Sum score ranges from 0 to 14 (no need to great need). Assessment to identify SPC needs was done in university hospital wards between 1 and 08/2017 by health care professionals on admission of the patient if the disease was incurable and expected prognosis < 12 months. The Integrated Palliative Outcome Scale (IPOS, staff version), an outcome assessment instrument for palliative care that consists of ten items, served as external criterion; in sub samples inter-rater/test-retest were performed. RESULTS: Data from 208 patients with incurable disease and life expectancy < 12 months (54.8% female; average age 63.5 years, range 21-96) were assessed using the tool. The tool has good convergent validity; the correlation between the sum scores of IPOS and our tool showed a significant and substantial effect. The sum score was independent of the patient's age, gender and primary diagnosis. Patients who already were in contact with SPC had significantly higher screening scores than patients without. With a cut point of ≥ 5, 80.8% of the screened patients were in need for SPC. Cronbach's alpha was α = .600. Rater agreement (inter-rater, test-retest) varied between single items. Correlation coefficients showed significant substantial effects. CONCLUSIONS: This is the first validation of a screening procedure in German language identifying SPC needs of adult patients with advanced cancer and the first using filter questions as a pre-screening. Proxy assessment of SPC needs by physicians in cancer care settings is feasible and the suggested tool presents a valid instrument to trigger a PC consultation. TRIAL REGISTRATION: The study was not registered.

Perspectives on multidrug-resistant organisms at the end of life : A focus group study of staff members and institutional stakeholders.

BACKGROUND: There is a lack of research into how hospital staff and institutional stakeholders (i. e. institutional representatives from public health authorities, hospital hygiene, and the departments of microbiology, palliative care, and geriatrics) engage with patients who are carriers of multidrug-resistant organisms and receiving end-of-life care. Knowledge of their experiences, workload, and needs should be considered in dealing with hospitalized carriers of multidrug-resistant organisms as well as staff education. OBJECTIVE: This study explored and compared staff members' and stakeholders' perspectives on multidrug-resistant organisms and on provision of end-of-life care to carrier patients. METHODS: In this study four focus groups consisting of hospital staff members and institutional stakeholders were formed within a mixed-methods parent study in a palliative care unit at a university clinic and a geriatric ward of a Catholic and academic teaching hospital. Participants discussed results from staff and stakeholder interviews from a former study phase. Data were analyzed according to Grounded Theory and perspectives of staff members and institutional stakeholders were compared and contrasted. RESULTS: Key issues debated by staff members (N = 19) and institutional stakeholders (N = 10) were 1) the additional workload, 2) reasons for uncertainty about handling carrier patients, 3) the format of continuing education, and 4) the preferred management approach for dealing with multidrug-resistant organism carrier patients. Although similar barriers (e. g. colleagues' ambiguous opinions) were identified, both groups drew different conclusions concerning the management of these barriers. While institutional stakeholders recommended making decisions on hygiene measures under consideration of the specific patient situation, staff members preferred the use of standardized hygiene measures which should be applied uniformly to all patients. DISCUSSION: Staff members and institutional stakeholders perceived similar barriers to practice caused by multidrug-resistant organisms and similar needs for continuing education. The staff members' preferred management approach might originate from an uncertainty about the multidrug-resistant organism infection risk. Experiences and visions of both groups should be included in a specific recommendation for end-of-life care to ensure behavioral confidence.

Multidrug-resistant bacterial microorganisms (MDRO) in end-of-life care: development of recommendations for hospitalized patients using a mixed-methods approach.

PURPOSE: Palliative care professionals are frequently confronted with patients colonized or infected with MDRO. One major challenge is how to balance necessary isolation measures and social inclusion as one of the main principles of palliative and end-of-life care. To date, MDRO-specific policies and protocols vary widely between institutions. AIM: provide empirical recommendations on how to deal with hospitalized MDRO patients in end-of-life care. METHODS: Recommendations were developed based on (i) initial results of face-to-face interviews and focus groups, (ii) impartial experts' comments and consensus on the draft via online survey and (iii) a face-to-face meeting with consortium members to finalize recommendations. Findings of 158 interviews and six focus groups (39 participants) with patients, family caregivers, staff members and institutional stakeholders contributed to the recommendations. The assessments of 17 experts were considered. RESULTS: In total, 21 recommendations were approved. The recommended strategy in dealing with MDRO at the end of life allows case-based application of protection and isolation measures. MDRO diagnostics and therapy involve screening at admission. The recommendations suggest consideration of required accommodation facilities, provided material as well as staff and time resources. The recommendations further highlight the importance of providing for strategies enabling the patient's social inclusion and provision of verbal and written information about MDRO for patients and family caregivers, transparent medical documentation, and staff member training. CONCLUSION: The recommendations summarize the perspectives of individuals and groups affected by MDRO at the end of life and provide practical guidance for clinical routine. Further dissemination and implementation requirements are discussed and should contain the evaluation of the knowledge, views, worries, and anxieties of the target groups.

Staff members' ambivalence on caring for patients with multidrug-resistant bacteria at their end of life: A qualitative study.

AIMS AND OBJECTIVES: To explore healthcare professionals' personal experiences, feelings and attitudes about caring for hospitalised patients with multidrug-resistant bacteria in palliative and geriatric care. BACKGROUND: Working in end-of-life care involves at times burdening demands that affect not only healthcare professionals personally but also their actions. It is suggested that multidrug-resistant bacteria and their consequences for colonised or infected patients in hospitals are among the challenges for all professionals in end-of-life care. Little is known about the feelings and experiences of staff members during healthcare activities with regard to these bacteria. DESIGN: A qualitative interview study in two German hospitals. METHODS: We interviewed 35 staff members from a German palliative care unit and a geriatric unit about their experiences with multidrug-resistant bacteria in end-of-life care and the management of colonised or infected patients. Semistructured interviews were transcribed verbatim and analysed using grounded theory. RESULTS: Interviewees represented two interdisciplinary teams with 40% nurses, 26% physicians and 34% other professionals. Salient themes that were identified included impact of multidrug-resistant bacteria on staff members' personal actions, feelings and attitudes towards the bacteria and the required isolation measures. Besides higher workload and consequences for working routines, the patients' palliative care needs were recognised, as well as the necessary protection measures to avoid contaminations in hospital. Healthcare professionals reported a dilemma that they experienced when facing these diverse demands. CONCLUSIONS: Findings point to emotional and behavioural ambivalence in end-of-life care among staff members because necessary isolation measures and particular situation in end-of-life care create unsolvable conflicts for healthcare professionals. Possible strategies to cope with ambivalence are discussed. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals in palliative and geriatric care have to deal with multidrug-resistant bacteria and have to face contradictory feelings while trying to fulfil patients' needs as well as isolation requirements.

Caring for patients with brain tumors compared to patients with non-brain tumors: Experiences and needs of informal caregivers in home care settings.

BACKGROUND/OBJECTIVE: Informal caregivers of patients with advanced cancer experience a challenging time, especially while caring for the patient at home. The aim of this study is to compare experiences, perceived burdens, and needs during home care of informal caregivers of brain tumor patients and informal caregivers of non-brain tumor patients. METHODS: 28 informal caregivers (17 brain tumor group, 11 non-brain tumor group) participated in this study. Semi-structured interviews were conducted to gather information retrospectively. Data was analyzed using principles of thematic analysis method. RESULTS: The results support existing evidence that the themes assessment of the situation, dealing with the situation, effects of the situation, and support by others are of importance to all informal caregivers. Caregivers in the brain tumor group put more emphasis on information and perception of the situation by others than caregivers in the non-brain tumor group. CONCLUSION: The emerging need for information of caregivers and the effects for caregivers of changes in the perception of the situation by others should be addressed to better support informal caregivers of brain tumor patients.

[Wishes of nursing home residents for their dying]. / Wünsche von Bewohnern stationärer Altenhilfeeinrichtungen für ihr Sterben.

BACKGROUND: Institutions of inpatient geriatric care are dependent on specific and practicable concepts for the terminal care of old people, because residential and nursing homes are places for the last phase of life. OBJECTIVE: The objective of this study was to identify the wishes of residents for their dying who live in a residential or nursing home. METHOD: The analysis was based on 10 semi-structured expert interviews with residential and nursing home residents. The interviews were evaluated using the method of qualitative summarizing content analysis. Based on the grounded theory a procedure was selected in which data were collected, prepared and evaluated in parallel. RESULTS AND DISCUSSION: Residents expressed, inter alia, the following wishes: not to receive life-prolonging measures, not to have pain, not to be in need of care or bedridden, to receive affection while dying and to find forgiveness and reconciliation as well as to die peacefully in the residential and/or nursing home. In addition, there were a variety of wishes, which, due to their diversity make a unified approach to the palliative care of older people in residential and/or nursing homes impractical. The study showed that residents are thinking about dying and/or death, have desires for their dying and are also willing to talk about it. The recording and the translation of these wishes and also the response to the residents' fears can be achieved by the implementation of a palliative culture and the training of employees.