Destigmatizing Palliative Care among Young Adults-A Theoretical Intervention Mapping Approach.

Background: In medicine, stigmatization pertains to both afflicted individuals and diseases themselves but can also encompass entire medical fields. In regard to demographic change and the rising prevalence of oncological diseases, palliative care will become increasingly important. However, palliative care faces multiple stigmas. These include equating of palliative care with death and dying. A timely integration of palliative care would have the potential to alleviate symptom burden, diminish the risk of overtreatment, and thus save healthcare-related costs. Several interventions have been developed to destigmatize palliative care. However, they have mainly focused on the general public. Aim: The aim of this work is to develop a theoretical framework for an interventional campaign targeted at young adults to systematically destigmatize palliative care. Methods: The basis for the development of the campaign is a systematic review conducted by our working group that assessed the perception and knowledge of palliative care of young adults aged 18 to 24 years. To design a possible intervention, the Intervention Mapping approach was used. Results: The target group of young adults can be effectively reached in secondary schools, vocational schools, and universities. The target population should be able to discuss the content of palliative care and openly talk about death and dying. At the environmental level, palliative care should be more present in public spaces, and death and dying should be freed from taboos. Within an intervention with palliative care experts and patients serving as interventionists, these changes can be achieved by incorporating evidence-based methods of behavioral change. Conclusions: An early engagement with palliative care could contribute to the long-term reduction of stigmas and address the demographic shift effectively. A multimodal intervention approach comprising knowledge dissemination, exchange, and media presence provides an appropriate framework to counter the existing stigmatization of palliative care within the peer group of young adults.

Multicenter exploration of specialist palliative care in patients with left ventricular assist devices - a retrospective study.

BACKGROUND: The number of advanced heart failure patients with left ventricular assist devices (LVAD) is increasing. Despite guideline-recommendations, little is known about specialist palliative care involvement in LVAD-patients, especially in Europe. This study aims to investigate timing and setting of specialist palliative care in LVAD-patients. METHODS: We conducted a retrospective multicenter study in 2022. Specialist palliative care services in German LVAD-centers were identified and invited to participate. Forty adult LVAD-patients (mean age 65 years (SD 7.9), 90% male) from seven centers that received a specialist palliative care consultation during hospitalization were included. RESULTS: In 37 (67.3%) of the 55 LVAD-centers, specialist palliative care was available. The median duration between LVAD-implantation and first specialist palliative care contact was 17 months (IQR 6.3-50.3 months). Median duration between consultation and death was seven days (IQR 3-28 days). 65% of consults took place in an intensive/intermediate care unit with half of the patients having a Do-Not-Resuscitate order. Care planning significantly increased during involvement (advance directives before: n = 15, after: n = 19, p < 0.001; DNR before: n = 20, after: n = 28, p < 0.001). Symptom burden as assessed at first specialist palliative care contact was higher compared to the consultation requests (request: median 3 symptoms (IQR 3-6); first contact: median 9 (IQR 6-10); p < 0.001) with a focus on weakness, anxiety, overburdening of next-of-kin and dyspnea. More than 70% of patients died during index hospitalization, one third of these in a palliative care unit. CONCLUSIONS: This largest European multicenter investigation of LVAD-patients receiving specialist palliative care shows a late integration and high physical and psychosocial symptom burden. This study highlights the urgent need for earlier integration to identify and address poorly controlled symptoms. Further studies and educational efforts are needed to close the gap between guideline-recommendations and the current status quo.

Palliative care education and knowledge transfer into practice - a multicenter survey among medical students and resident physicians in Germany using a mixed-methods design.

Objective: In 2009, Palliative care was incorporated into the medical curriculum as Cross-Sectional Subject 13 (QB13) by means of the revision of the Medical Licensing Regulations for Physicians. The aim of this study was to determine the strengths and deficits of QB13 student education for palliative care in clinical practice in a multi-centre setting and to identify potential for improvement. Methods: Online questionnaires filled out by medical students during their Practical Year (PY) and resident physicians from the university hospitals in Aachen, Düsseldorf, and Cologne were descriptively analyzed using SPSS; free-text responses were categorized and quantified. Semi-structured interviews with the resident physicians (using a mixed-methods design) were analyzed through content analysis. Emerging categories were quantified. Results: Analysis of 130 fully completed questionnaires and 23 interviews revealed that participants particularly benefited from patient- and practice-oriented small-group sessions for their clinical work. Despite some university-specific differences, the PY students identified a need for training in end-of-life-care, while resident physicians saw a need for training primarily in dealing with patients and their relatives. They also reported deficits in transferability. Conclusion: QB13 should be organised in cross-university curricula and provide sufficient resources for practical-oriented small-group teaching. Based on the "unit of care", besides caring for palliative patients, dealing with patients' families should also be an education focus. To improve transferability into clinical practice, students should be actively involved in the care of palliative patients.

The General Public and Young Adults' Knowledge and Perception of Palliative Care: A Systematic Review.

Background: As a result of demographic change, chronic and oncological diseases are gaining importance in the context of public health. Palliative care plays a crucial role in maintaining the quality of life of those affected. International guidelines demand access to palliative care not only for the elderly but also for younger people who face severe illnesses. It can be assumed that palliative care will become increasingly important for them. In order to develop public health strategies which are able to promote palliative care, it is important to assess the knowledge of, and attitude towards, palliative care as found among members of the general public and its specific target groups. In particular, little is known about young adults' knowledge and perceptions of palliative care. Objectives and design: This work aimed to assess the understanding and viewpoints regarding palliative care among the general population and among young adults aged 18 to 24. We therefore conducted a systematic review, which, for this target population, could be seen as a novel approach. Methods: Exclusion and inclusion criteria were developed using the PICOS process. Literature was researched within MEDLINE (via PubMed), Google Scholar and Web of Science. A search string was developed and refined for all three databases. Grey literature was included. Duplicates were excluded using Mendeley. The literature was independently screened by two researchers. Narrative synthesis was used to answer the main research question. Results: For the general public, palliative care is still associated with death and dying and comforting sick people towards the end of their lives. Multiple social determinants are linked to better knowledge of palliative care: higher education, higher income, female gender, having relatives that received palliative care, and permanent employment. The population's knowledge of palliative care structures increases, the longer such structures have been established within a country. Young adults are familiar with the term palliative care, yet their understanding lacks nuance. They associate palliative care with death and dying and perceive palliative care to be a medical discipline primarily for the elderly. Nevertheless, young adults demand participation within the planning of interventions to destigmatize palliative care. Conclusions: The general public still lacks a detailed understanding of palliative care. Palliative care faces stigma at multiple levels, which creates barriers for those who set out to implement it. However, addressing young adults as a crucial peer group can help break down barriers and promote access to palliative care.

Triggers of intensive care patients with palliative care needs from nurses' perspective: a mixed methods study.

PURPOSE: Triggers have been developed internationally to identify intensive care patients with palliative care needs. Due to their work, nurses are close to the patient and their perspective should therefore be included. In this study, potential triggers were first identified and then a questionnaire was developed to analyse their acceptance among German intensive care nurses. METHODS: For the qualitative part of this mixed methods study, focus groups were conducted with intensive care nurses from different disciplines (surgery, neurosurgery, internal medicine), which were selected by convenience. Data were analysed using the "content-structuring content analysis" according to Kuckartz. For the quantitative study part, the thus identified triggers formed the basis for questionnaire items. The questionnaire was tested for comprehensibility in cognitive pretests and for feasibility in a pilot survey. RESULTS: In the qualitative part six focus groups were conducted at four university hospitals. From the data four main categories (prognosis, interprofessional cooperation, relatives, patients) with three to 15 subcategories each could be identified. The nurses described situations requiring palliative care consults that related to the severity of the disease, the therapeutic course, communication within the team and between team and patient/relatives, and typical characteristics of patients and relatives. In addition, a professional conflict between nurses and physicians emerged. The questionnaire, which was developed after six cognitive interviews, consists of 32 items plus one open question. The pilot had a response rate of 76.7% (23/30), whereby 30 triggers were accepted with an agreement of ≥ 50%. CONCLUSION: Intensive care nurses see various triggers, with interprofessional collaboration and the patient's prognosis playing a major role. The questionnaire can be used for further surveys, e.g. interprofessional triggers could be developed.

Implementing spiritual care education into the teaching of palliative medicine: an outcome evaluation.

BACKGROUND: The concept of "total pain" plays an important role in palliative care; it means that pain is not solely experienced on a physical level, but also within a psychological, social and spiritual dimension. Understanding what spirituality entails, however, is a challenge for health care professionals, as is screening for the spiritual needs of patients. OBJECTIVE: This is a novel, interprofessional approach in teaching undergraduate medical students about spiritual care in the format of a seminar. The aim of this study is to assess if an increase in knowledge about spiritual care in the clinical context is achievable with this format. METHODS: In a mandatory seminar within the palliative care curriculum at our university, both a physician and a hospital chaplain teach strategies in symptom control from different perspectives (somatic domain - spiritual domain). For evaluation purposes of the content taught on the spiritual domain, we conducted a questionnaire consisting of two parts: specific outcome evaluation making use of the comparative self-assessment (CSA) gain and overall perception of the seminar using Likert scale. RESULTS: In total, 52 students participated. Regarding specific outcome evaluation, the greatest gain was achieved in the ability to define total pain (84.8%) and in realizing its relevance in clinical settings (77.4%). The lowest, but still fairly high improvement was achieved in the ability to identify patients who might benefit from spiritual counselling (60.9%). The learning benefits were all significant as confirmed by confidence intervals. Overall, students were satisfied with the structure of the seminar. The content was delivered clearly and comprehensibly reaching a mean score of 4.3 on Likert scale (4 = agree). The content was perceived as overall relevant to the later work in medicine (mean 4.3). Most students do not opt for a seminar solely revolving around spiritual care (mean 2.6). CONCLUSIONS: We conclude that implementing spiritual care education following an interprofessional approach into existing medical curricula, e.g. palliative medicine, is feasible and well perceived among medical students. Students do not wish for a seminar which solely revolves around spiritual care but prefer a close link to clinical practice and strategies.

Caring for patients during voluntarily stopping of eating and drinking (VSED): experiences of a palliative care team in Germany.

BACKGROUND: Health-care professionals are confronted with patients who wish to end their lives through voluntarily stopping eating and drinking (VSED). During VSED, symptoms such as agitation, thirst or psychological distress may arise, thus making close medical accompaniment necessary. Dealing with these symptoms can put a high burden on palliative care teams. Furthermore, divergent perceptions of the ethical classification of VSED may lead to moral distress. The aim of this study was to assess the influence of experience gained over time on the burden of palliative care professionals while accompanying patients during VSED and to assess the perceptions of coping strategies. METHODS: This is a prospective single-centre study conducted at the Interdisciplinary Centre for Palliative Care at University Hospital Duesseldorf, Germany. At two points in time (T1, T2) one year apart, team members of all professions who were actively involved in the accompaniment were eligible to complete a pretested questionnaire. RESULTS: Team members perceived the symptom complex of psychological distress, anxiety, and agitation to be the most burdensome symptoms for the patients (T1: 28/49, 57.1%; T2: 33/59, 55.9%). Thirst was the second most observed symptom (T1: 17/49, 34.7%, T2: 19/59, 32.2%). These were also the most burdensome symptoms for individual team members. Most team members found there were no general moral concerns. There was a decrease in the perceived importance of support strategies such as ethical counselling (85.7% versus 63.6%). CONCLUSIONS: Accompanying patients during VSED is a challenge for health-care professionals. When comparing T2 to T1, less emphasis lies on the importance of ethical counselling or psychiatric assessment to build a foundation for the accompaniment. Moral and ethical concerns seem to play a minor role. More in-depth studies covering a bigger sample size as well as qualitative studies are needed.

Recommendations on palliative care aspects in intensive care medicine.

BACKGROUND: The timely integration of palliative care is important for patients suffering from various advanced diseases with limited prognosis. While a German S-3-guideline on palliative care exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for integration of palliative care into intensive care medicine is missing to date. METHOD: Ten German medical societies worked on recommendations on palliative care aspects in intensive care in a consensus process from 2018 to 2023. RESULTS: Based on the german consensus paper, the palliative care aspects of the respective medical disciplines concerning intensive care are addressed. The recommendations partly refer to general situations, but also to specific aspects or diseases, such as geriatric issues, heart or lung diseases, encephalopathies and delirium, terminal renal diseases, oncological diseases and palliative emergencies in intensive care medicine. Measures such as non-invasive ventilation for symptom control and compassionate weaning are also included. CONCLUSION: The timely integration of palliative care into intensive care medicine aims to improve quality of life and symptom control and also takes into acccount the often urgently needed support for patients' highly stressed relatives.

[Palliative aspects in clinical acute and emergency medicine as well as intensive care medicine: consensus paper of the DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA and DGPalliativmedizin]. / Palliativmedizinische Aspekte in der klinischen Akut- und Notfallmedizin sowie Intensivmedizin: Konsensuspapier der DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA und DGPalliativmedizin.

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S-3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients being treated in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care.

[Palliative aspects in clinical acute and emergency medicine as well as intensive care medicine : Consensus paper of the DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA and DGPalliativmedizin]. / Palliativmedizinische Aspekte in der klinischen Akut- und Notfallmedizin sowie Intensivmedizin : Konsensuspapier der DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA und DGPalliativmedizin.

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S­3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care.

[Palliative aspects in clinical acute and emergency medicine as well as intensive care medicine : Consensus paper of the DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA and DGPalliativmedizin]. / Palliativmedizinische Aspekte in der klinischen Akut- und Notfallmedizin sowie Intensivmedizin : Konsensuspapier der DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA und DGPalliativmedizin.

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S­3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care.

[Palliative aspects in clinical acute and emergency medicine as well as intensive care medicine : Consensus paper of the DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA and DG Palliativmedizin]. / Palliativmedizinische Aspekte in der klinischen Akut- und Notfallmedizin sowie Intensivmedizin : Konsensuspapier der DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA und DG Palliativmedizin.

The integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S3 guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care.

Mindfulness and compassion training on daily work with patients and within the multiprofessional palliative care team: a retrospective self-assessment study.

BACKGROUND: Palliative care teams work under challenging conditions in a sensitive setting with difficult tasks. The multi-professional team can play an important role. Mindfulness and compassion-based practices are used to build resilience. Our aim was to examine (1) feasibility and acceptability, (2) satisfaction and impact, and (3) opportunities and limitations of a mindfulness course. METHODS: An eight-week mindfulness and compassion course was delivered in a university-based specialized palliative care unit. A meditation teacher provided preparatory evening sessions and meditation exercises that could be integrated into daily activities. The scientific analysis of the course was based on a questionnaire developed for quality assessmentThe first two parts consisted of demographic, Likert-type, and free-text items. Part 3 consisted of learning objectives that were self-assessed after finishing the course (post-then). In the analysis, we used descriptive statistics, qualitative content analysis, and comparative self-assessment. RESULTS: Twenty four employees participated. 58% of participants attended 4 or more of the 7 voluntary mindfulness days. 91% expressed moderate to high satisfaction and would recommend the palliative care program to others. Three main categories emerged in the qualitative content analysis: providing feedback on the course, personal impact, and impact on professional life. The opportunity for self-care in a professional context was highlighted. Learning gains (CSA Gain) were high (38.5-49.4%) in terms of knowledge and techniques, moderate (26.2-34.5%) in terms of implementation of learned skills, and rather low (12.7-24.6%) in terms of changes to attitude. CONCLUSION: Our evaluation shows that the participants of a mindfulness and compassion course considered it as a feasible and welcome tool to familiarize a multi-professional palliative care team with self-care techniques. TRIAL REGISTRATION: Internal Clinical Trial Register of the Medical Faculty, Heinrich Heine University Düsseldorf, No. 2018074763 (registered retrospectively on 30th July 2018).

The Landscape of Outpatient Palliative Care in Germany: Results from a Retrospective Analysis of 14,792 Patients.

BACKGROUND: Palliative care comprises multiprofessional, integrated, person-centered healthcare services for patients and their families facing problems related to progressive or advanced diseases and limited life expectancy. Although non-oncology patients' needs are similar to those of tumor patients, they are often underestimated. The purpose of our study was to investigate the actual utilization of palliative care services in Germany, especially in the outpatient setting. METHODS: Using the IQVIA Disease Analyzer database, a total of 14,792 outpatients from 805 primary care practices in Germany with documented palliative care and related diagnosis between 2018 and 2021 were analyzed. Proportions of different diagnoses among patients receiving outpatient palliative care were stratified by gender and different age groups. RESULTS: The most common underlying diagnosis for outpatient palliative care was cancer (55%), followed by heart failure (16%) and dementia (8%), with age- and sex-specific differences found in the proportion of diagnoses for utilization. While the relative proportions of cancers decreased with age (87% in the 18- to 50-year-old age group versus 37% in the 80-plus age group), the proportion of palliative care related to heart failure increased in the older population (2% in the 18- to 50-year-old age group versus 25% in the 80-plus age group). CONCLUSIONS: This study provides an overview of the situation of outpatient palliative care in Germany and shows age- and gender-specific trends regarding the underlying medical diagnoses. Based on these data, palliative care should be adapted to current demographic developments.

Palliative Care e-Learning for Physicians Caring for Critically Ill and Dying Patients during the COVID-19 Pandemic: An Outcome Evaluation with Self-Assessed Knowledge and Attitude.

During the COVID-19 pandemic, the care of critically ill and dying patients in isolation wards, intensive care units (ICUs), and regular wards was severely impaired. In order to support physicians in communicative and palliative care skills, an e-learning tool was developed as part of the joint project "Palliative Care in Pandemic Times" (PallPan). This study investigates the feasibility of this e-learning tool. Secondly, we aim to analyze changes in knowledge and attitude upon completion of the e-learning tool. A 38-item questionnaire-based evaluation study with assessment of global and specific outcomes including ICU and non-ICU physicians was performed. In total, 24 questionnaires were included in the anonymous analysis. Feasibility was confirmed by a very high rate of overall satisfaction (94% approval), with relevance reaching 99% approval. Overall, we detected high gains in knowledge and noticeably lower gains on the attitude plane, with the highest gain in naming reasons for incorporating palliative care. The lowest learning gain on the attitude plane was observed when the participants were confronted with their own mortality. This study shows that e-learning is a feasible tool for gaining knowledge and even changing the attitudes of physicians caring for critically ill and dying patients in a self-assessment evaluation.

[Generalist palliative care in hospitals during the first wave of the COVID-19 pandemic]. / Allgemeine Palliativversorgung im Krankenhaus während der ersten Welle der COVID-19-Pandemie.

BACKGROUND: In the research network of German university palliative care centers (PallPan), as part of Network University Medicine (NUM), recommendations for action were developed in regard to the care provided for seriously ill and dying patients during a pandemic. For this purpose, the experiences and needs of hospital staff working closely with patients outside of specialized palliative care units during the first wave of the COVID-19 pandemic were also examined. MATERIALS AND METHODS: Nationwide online survey of 8,882 physicians, nurses and therapists working in acute inpatient care in the period from December 2020 to January 2021 by means of a newly developed and piloted questionnaire on changes, burdens and cooperation with specialized palliative care. Grouping based on the changes in the number of seriously ill and dying people in the first wave of the pandemic. Due to the exploratory character of the survey, the data were analyzed descriptively. RESULTS: 505/8882 completed questionnaires were evaluated (5.7 %). 167/505 (33.1 %) of the respondents reported a lower quality of care for the critically ill and dying. 464/505 (91.8 %) reported exemptions in place for visiting the dying. The most frequently mentioned stress factor was the perceived loneliness of the seriously ill and dying 437/505 (86.5 %), followed by stricter hygiene rules 409/505 (81 %), increased workload 372/505 (73.3 %) and perceived psychological stress on relatives and survivors 395/505 (78.2 %). 141/505 (27.9 %) of respondents used Tablet PCs to support patient-family communication. 310/505 (61.4 %) involved palliative care professionals in patient care, and 356/505 (70.5 %) of respondents found other palliative care services helpful. CONCLUSION: Experiences and suggestions for improving palliative care in pandemic times are integrated into the PallPan recommendations for action. Family visits should be allowed and supplemented by digital offers. Palliative Care should also be integrated into both pandemic and contingency plans.

Inpatient Specialist Palliative Care in Patients With Left Ventricular Assist Devices (LVAD): A Retrospective Case Series.

Background: Repeat hospitalizations, complications, and psychosocial burdens are common in patients with left ventricular assist devices (LVAD). Specialist palliative care (sPC) involvement supports patients during decision-making until end-of-life. In the United States, guidelines recommend early specialist palliative care (esPC) involvement prior to implantation. Yet, data about sPC and esPC involvement in Europe are scarce. Materials and Methods: This is a retrospective descriptive study of deceased LVAD patients who had received sPC during their LVAD-related admissions to two university hospitals in Duesseldorf, Germany and Basel, Switzerland from 2010 to 2021. The main objectives were to assess: To which extent have LVAD patients received sPC, how early is sPC involved? What are the characteristics of those, how did sPC take place and what are key challenges in end-of-life care? Results: In total, 288 patients were implanted with a LVAD, including 31 who received sPC (11%). Twenty-two deceased LVAD patients (19 male) with sPC were included. Mean patient age at the time of implantation was 67 (range 49-79) years. Thirteen patients (59%) received LVAD as destination therapy, eight patients (36%) were implanted as bridge to transplantation (BTT), and one as an emergency LVAD after cardiogenic shock (5%). None of the eight BTT patients received a heart transplantation before dying. Most (n = 13) patients lived with their family and mean Eastern Cooperative Oncology Group (ECOG) performance status was three. Mean time between LVAD implantation and first sPC contact was 1.71 years, with a range of first sPC contact from 49 days prior to implantation to more than 6 years after. Two patients received esPC before implantation. In Duesseldorf, mean time between first sPC contact and in-hospital death was 10.2 (1-42) days. In Basel, patients died 16 (0.7-44) months after first sPC contact, only one died on the external sPC unit. Based on thorough examination of two case reports, we describe key challenges of sPC in LVAD patients including the necessity for sPC expertise, ethical and communicative issues as well as the available resources in this setting. Conclusion: Despite unequivocal recommendations for sPC in LVAD patients, the integration of sPC for these patients is yet not well established.

Inpatient generalist palliative care during the SARS-CoV-2 pandemic - experiences, challenges and potential solutions from the perspective of health care workers.

BACKGROUND: The SARS-CoV-2 pandemic has presented major challenges to the health system. Despite high acute case numbers, patients without Covid-19 still need to be cared for. Due to the severity of the disease and a possible stressful overall situation, patients with palliative care needs also require comprehensive care during pandemic times. In addition to specialized palliative care facilities, this also takes place in non palliative care wards. In order to ensure this general palliative care also in pandemic times, the experience of the staff should be used. The aim of this paper is to examine challenges and possible solutions for general palliative care inpatients in relation to the care of seriously ill and dying patients and their relatives. METHODS: Qualitative semi-structured focus groups were conducted online for the study. Participants were staff from intensive care or isolation wards or from units where vulnerable patients (e.g. with cognitive impairment) are cared for. The focus groups were recorded and subsequently transcribed. The data material was analysed with the content structuring content analysis according to Kuckartz. RESULTS: Five focus groups with four to eight health care professionals with various backgrounds were conducted. Fifteen main categories with two to eight subcategories were identified. Based on frequency and the importance expressed by the focus groups, six categories were extracted as central aspects: visiting regulations, communication with relatives, hygiene measures, cooperation, determination of the patients will and the possibility to say good bye. CONCLUSION: The pandemic situation produced several challenges needing specific solutions in order to manage the care of seriously ill and dying patients. Especially visiting needs regulation to prevent social isolation and dying alone. Finding alternative communication ways as well as interprofessional and interdisciplinary cooperation is a precondition for individualised care of seriously ill and dying patients and their relatives. Measures preventing infections should be transparently communicated in hospitals.

The characteristics of patients who discontinue their dying process - an observational study at a single university hospital centre.

BACKGROUND: End-of-life integrated care plans are used as structuring tools for the care of the dying. A widely adopted example is the Liverpool Care Pathway for the Dying Patient (LCP). Recently, several concerns were raised about LCP care, such as a worry that diagnosis of dying might be leading to a self-fulfilling trajectory, including hastening of death. However, data on rates of discontinuation of LCP care are lacking. In an observational study, we therefore investigated the incidence, features and trajectory of patients who were discontinued from the LCP. We hypothesised that (1) it is common to discontinue patients from the LCP, (2) quality of life does not decrease for discontinued LCP patients, and (3) discontinued patients live longer than patients who remain within LCP care. METHODS: All adult patients who were diagnosed as dying in a German university hospital specialized palliative care unit were included in 2013 and 2014. Actuarial estimation of survival prognostication tools and a number of quality of life indicators were used for data collection. Survival time was analysed using Kaplan-Meier estimates. Group differences in quality of life were tested using multivariate analysis of variance. RESULTS: 159 patients were included in a digital version of the LCP. 15 patients (9.4 %) were discontinued later. Quality of life did not decrease for discontinued patients during LCP care (p = 0.16). LCP discontinued patients lived significantly longer than the remaining LCP subgroup (difference of means 296 hours, 95 % confidence interval 105.5 to 451.5 hours; difference of survival function estimates p < 0.0001). CONCLUSIONS: When patients are diagnosed as dying, death is not the inevitable outcome of an end-of-life integrated care plan such as the LCP. Instead, it is common to discontinue the LCP care. Regular careful interprofessional assessments are important for identifying those patients who need to be discontinued from their end-of-life care plan. In this study, we found no evidence for harm by the LCP. We conclude that a correctly applied integrated care plan can be useful to provide good and safe care for the dying. TRIAL REGISTRATION: Internal Clinical Trial Register of the Medical Faculty, Heinrich Heine University Düsseldorf, No. 2015053680 (22 May 2015).