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.

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.

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.

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.

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.

Perceptions on Specialist Palliative Care Involvement During and After Cardiopulmonary Resuscitation: A Qualitative Study.

IMPORTANCE: Cardiopulmonary resuscitation (CPR) is an exceptional physical situation and may lead to significant psychological, spiritual, and social distress in patients and their next of kin. Furthermore, clinicians might experience distress related to a CPR event. Specialist palliative care (sPC) integration could address these aspects but is not part of routine care. OBJECTIVES: This study aimed to explore perspectives on sPC integration during and after CPR. A needs assessment for sPC, possible triggers indicating need, and implementation strategies were addressed. DESIGN SETTING AND PARTICIPANTS: A multiprofessional qualitative semistructured focus group study was conducted in a German urban academic teaching hospital. Participants were clinicians (nursing staff, residents, and consultants) working in the emergency department and ICUs (internal medicine and surgical). ANALYSIS: The focus groups were recorded and subsequently transcribed. Data material was analyzed using the content-structuring content analysis according to Kuckartz. RESULTS: Seven focus groups with 18 participants in total were conducted online from July to November 2022. Six main categories (two to five subcategories) were identified: understanding (of palliative care and death), general CPR conditions (e.g., team, debriefing, and strains), prognosis (e.g., preexisting situation, use of extracorporeal support), next of kin (e.g., communication, presence during CPR), treatment plan (patient will and decision-making), and implementation of sPC (e.g., timing, trigger factors). CONCLUSIONS: Perceptions about the need for sPC to support during and after CPR depend on roles, areas of practice, and individual understanding of sPC. Although some participants perceive CPR itself as a trigger for sPC, others define, for example, pre-CPR-existing multimorbidity or complex family dynamics as possible triggers. Suggestions for implementation are multifaceted, especially communication by sPC is emphasized. Specific challenges of extracorporeal CPR need to be explored further. Overall, the focus groups show that the topic is considered relevant, and studies on outcomes are warranted.

Handling the desire to die- evaluation of an elective course for medical students.

BACKGROUND: The desire to die can occur in palliative care patients with a prevalence of up to 22%. Not every desire to die is accompanied by a pressure to act, but usually by a burden that can arise from various factors. To address this burden appropriately, health care workers should be trained. Based on an evaluated course on handling the desire to die, an elective course for medical students was developed and evaluated. In order to identify the impact of the elective course's content, a comparison of attitudes towards assisted dying with two other participant groups was conducted. Therefore, three questions from the evaluation of the elective course were used. METHOD: Online evaluation of the elective and questions addressing attitude were assessed using a five-point Likert scale. The specific outcome-based assessment was determined using the Comparative Self-Assessment Gain. The main participant group (group 1) were students who took the elective. The additional survey on attitudes towards assisted dying included undergraduate medical students who had taken compulsory palliative care courses (group 2) and physicians who had taken an introductory course in intensive care or emergency medicine (group 3). RESULTS: Group 1 (n = 13, response rate rr = 86.7%) was very satisfied with the blended learning format (100%) and the course itself (100%). They were able to deepen their knowledge (81.0%) and train skills (71.2%) through the course. In the additional surveys, there were 37 students in group 2 (rr = 66.1%) and 258 physicians in group 3 (rr = 73.6%). Willingness to assist with or accompany the various options for assisted dying varied according to the type of assistance. Among the participants, it can be summarised that the highest willingness was shown by the students of group 2 followed by the physicians of group 3 and the students of group 1. CONCLUSIONS: A course on handling the desire to die of palliative patients can deepen knowledge and train communication skills and thus support self-confidence. Dealing with the background of the desire to die, knowledge about assisted dying, but also one's own attitudes and responsibilities can influence the attitude towards assisted dying.

[Perspectives of a sample of mostly younger doctors on physician-assisted suicide]. / Sichtweisen einer Stichprobe überwiegend jüngerer Ärztinnen und Ärzte zum ärztlich-assistierten Suizid.

BACKGROUND: On 26 February 2020, the German Federal Constitutional Court revoked a law (§ 217 StGB) that had banned assisted suicide intended to be repeated on a regularly basis. Since then, a possible new legal regulation has been discussed. This study examined the knowledge, experiences, and attitudes of younger physicians towards physician-assisted suicide (PAS). METHODS: A quantitative survey of postgraduate courses in emergency medicine, critical care medicine, and hematology was conducted from November 2022 to March 2023. Possible factors influencing attitudes towards PAS were analyzed. RESULTS: A total of 1163 records (response rate 82.1%) were analyzed. Of the participants, 90.8% had experience with dying patients, 62.3% supported PAS only in palliative scenarios, 20.1% supported PAS regardless of the health status, 33.1% have been asked for PAS, and 3.3% had participated in PAS. In addition, 71.0% did not know the content of the Federal Constitutional Court's decision on § 217, 72.0% were not informed about the legislative proposals for the new regulation of PAS, and 66.4% saw doctors as the right person to decide whether a suicidal wish is permissible. CONCLUSION: Younger doctors differentiate in their attitude towards PAS between people without illnesses and those in palliative treatment situations. Further investigations into the causes of the frequent ignorance of the normative foundations are necessary. The results suggest that more educational work needs to be done about suicide alternatives and palliative care options.

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.

Drug landscape in patients receiving general outpatient palliative care in Germany: results from a retrospective analysis of 10,464 patients.

BACKGROUND: According to § 27 and § 87 1b of the German Social Code, Book V, general outpatient palliative care (GOPC) aims to promote, maintain, and improve the quality of life and self-determination of seriously ill people. It should enable them to live in dignity until death in their preferred environment. Instead of a curative approach GOPC treatment focuses on the multiprofessional objective of alleviating symptoms and suffering on a case-by-case basis using medication or other measures, as well as the management of an individual treatment plan. The aim of this study was therefore to investigate to what extent medication differs from 12 months prior GOPC treatment within 12 months following GOPC treatment. METHODS: A retrospective database cross sectional study based on the IQVIA Disease Analyzer (DA) was performed, including adult patients with cancer diagnosis and at least one documentation of palliative support between January 1st, 2018 and December 31st, 2021, in 805 general practices (GP). RESULTS: The results of this study show, that in the context of general general outpatient palliative care, there is a significant increase in the prescription of opioids (18.3% vs. 37.7%), sedatives (7.8% vs. 16.2%) and antiemetics (5.3% vs. 9.7%), as well as a significant reduction in other medications such as statins (21.4% vs. 11.5%), proton pump inhibitors (PPI) (41.2% vs. 35.3%), or antihypertensives (57.5% vs. 46.6%). CONCLUSIONS: Our results support the role of GOPC as an important element in improving pharmacological symptom control and deprescription to improve quality of life of patients at the end of their life.

Raising awareness of immune-related side effects in oncological patients under palliative care: a report of two cases.

BACKGROUND: Immune checkpoint inhibitors (ICI) have emerged as a successful treatment option for diverse cancer entities. However, ICI therapy can be associated with immune-related adverse events (irAE) that can affect any organ system. These side effects can be severe, irreversible and sometimes even fatal. Due to the presentation as diverse and often unspecific clinical patterns, end-of-life care concepts may be pursued hastily suspecting disease progression in oncological patients receiving palliative care (PC). CASE DESCRIPTION: This report describes two cancer patients whose symptom burden was caused by such irAEs: One patient with metastatic cutaneous squamous cell carcinoma (SCC) presenting with disorientation and urinary incontinence, another patient with metastatic melanoma presenting with a sudden and unspecific deterioration of the overall condition. After imaging and blood sampling, an encephalitis and an immune-mediated diabetes mellitus were diagnosed. After treatment with corticosteroids and hydration alongside insulin substitution both patients experienced a complete symptom relief. CONCLUSIONS: We aim to emphasize the importance of continued collaboration between primary care givers and PC teams as well as raise awareness among PC providers of severe immune-related side effects in cancer patients receiving ICI. Especially within this patient cohort, PC teams play a crucial part in detecting possible irAEs, which resolve in the majority of cases when receiving early guideline-adapted treatment.

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.