"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens.

BACKGROUND: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. METHODS: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. RESULTS: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. CONCLUSIONS: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum.

Patient and families' perspectives on telepalliative care: A systematic integrative review.

BACKGROUND: Telepalliative care is increasingly used in palliative care, but has yet to be examined from a patient and family perspective. A synthesis of evidence may provide knowledge on how to plan and provide telepalliative care that caters specifically to patients and families' needs. OBJECTIVE: To synthesise evidence on patients and families' perspectives on telepalliative care. DESIGN: A systematic integrative review (PROSPERO #CRD42022301206) reported in accordance with PRISMA 2020 guidelines. Inclusion criteria; primary peer-reviewed studies published 2011-2022, patient and family perspective, >18 years, telepalliative care and English/Danish language. Quality was appraised using the mixed-methods appraisal tool, version 2020. Guided by Toronto and Remington, data were extracted, thematically analysed and synthesised. DATA SOURCES: MEDLINE, EMBASE, PsycINFO and CINAHL were searched in March 2022 and updated in February 2023. RESULTS: Forty-four studies were included. Analysis revealed five themes; the effect of the Covid-19 pandemic on telepalliative care, adding value for patients and families, synchronous and asynchronous telepalliative care, the integration of telepalliative care with other services and the tailoring and timing of telepalliative care. CONCLUSION: Enhanced access to care and convenience, as attributes of telepalliative care, are highly valued. Patients and families have varying needs during the illness trajectory that may be addressed by early integration of telepalliative care based on models of care that are flexible and combine synchronous and asynchronous solutions. Further research should examine telepalliative care in a post-pandemic context, use of models of care and identify meaningful outcome measures from patient and family perspectives for evaluation of telepalliative care.

Report from the Third International Last Aid Conference: cultural diversity in palliative care.

The Third International Last Aid Conference was held from October 28 to 29, 2022, as a hybrid event. Altogether, there were 85 participants from 14 different countries. The main topics of the conference were cultural diversity in palliative care, public palliative care education (PPCE), experience with Last Aid courses from different countries, and founding possibilities for courses and research in Last Aid. The speakers from different countries presented their experiences with Last Aid courses for adult and children, as well as the online courses. The contribution of the work of the Last Aid Research Group International (LARGI) for the development of Last Aid was presented. This report provides an overview of the conference and the content of presentations and highlights the most interesting discussions points.

Public Health Palliative Care and Public Palliative Care Education.

This Special Issue, "Public Health Palliative Care (PHPC) and Public Palliative Care Education (PPCE)", highlights recent advances and challenges in PHPC and PPCE [...].

"I Needed to Know, No Matter What I Do, I Won't Make It Worse"-Expectations and Experiences of Last Aid Course Participants in Germany-A Qualitative Pilot Study.

BACKGROUND: The need to care for a loved one in a palliative state can lead to severe physical as well as psychological stress. In this context, Last Aid courses have been developed to support caring for relatives and to stimulate the public discussion on death and dying. The purpose of our pilot study is to gain an understanding of the attitudes, values, and difficulties of relatives caring for a terminally ill person. METHODS: A qualitative approach was used in form of five semi-structured guided pilot interviews with lay persons who recently attended a Last Aid course. The transcripts of the interviews were analyzed following Kuckartz's content analysis. RESULTS: Overall, the interviewed participants have a positive attitude toward Last Aid courses. They perceive the courses as helpful as they provide knowledge, guidance, and recommendations of action for concrete palliative situations. Eight main topics emerged during analysis: expectations regarding the course, transfer of knowledge, reducing fear, the Last Aid course as a safe space, support from others, empowerment and strengthening of own skills, and the improvement needs of the course. CONCLUSIONS: In addition to the expectations before participation and the knowledge transfer during the course, the resulting implications for its application are also of great interest. The pilot interviews show initial indications that the impact, as well as supportive and challenging factors regarding the ability to care for relatives to cope, should be explored in further research.

Time to End-of-Life of Patients Starting Specialised Palliative Care in Denmark: A Descriptive Register-Based Cohort Study.

Increasing numbers of patients are being referred to specialised palliative care (SPC) which, in order to be beneficial, is recommended to last more than three months. This cohort study aimed to describe time to end-of-life after initiating SPC treatment and to explore potential regional variations. We used national register data from all Danish hospital SPC teams. We included patients who started SPC treatment from 2015-2018 to explore if time to end-of-life was longer than three months. Descriptive statistics were used to summarise the data and a generalised linear model was used to assess variations among the five Danish regions. A total of 27,724 patients were included, of whom 36.7% (95% CI 36.2-37.1%) had over three months to end-of-life. In the Capital Region of Denmark, 40.1% (95% CI 39.0-41.3%) had over three months to end-of-life versus 32.5% (95% CI 30.9-34.0%) in North Denmark Region. We conclude that most patients live for a shorter period of time than the recommended three months after initiating SPC treatment. This is neither optimal for patient care, nor the healthcare system. A geographical variation between regions was shown indicating different practices, patient groups or resources. These results warrant further investigation to promote optimal SPC treatment.

Effectiveness of video consultations in type 1 diabetes patients treated with insulin pumps in the outpatient clinic: protocol for a randomised controlled trial.

INTRODUCTION: The purpose of the study is to assess the effectiveness of video consultations in patients with type 1 diabetes mellitus (DM) treated with insulin pumps in the outpatient clinic. METHODS AND ANALYSIS: A 52 weeks' duration, open-label, randomised controlled trial will be conducted, enrolling 100 patients with type 1 DM currently treated with insulin pump.Patients will be recruited from the diabetes outpatient clinic at Hospital of Southern Jutland, Department of internal medicine, Sønderborg. Participants will be randomised to either video consultations (experimental intervention) or standard care (control comparator). Participants in the video consultation group will follow their standard care treatment but will have all of their scheduled and non-scheduled appointments by video consultation. The control group will follow their standard care treatment as usual, having all their appointments at the outpatient centre. Primary outcome will be change from baseline of time in range (3.9-10.0 mmol/L). ETHICS AND DISSEMINATION: The study has been approved by the Regional Committe on Health Research Ethics for Southern Denmark, S-20200039G Acadre 20/12922. We will present the results of the trial at international conferences as well as publish the results of the trial in (a) peer-reviewed scientific journal(s). TRIAL REGISTRATION NUMBER: NCT04612933.

Is There a Need for Cultural Adaptation of the Last Aid Course?-A Mixed-Methods Study across the Danish-German Border.

Last Aid courses (LAC) have been established in 20 countries in Europe, Australia, and America to improve the public discourse about death and dying and to empower people to contribute to end-of-life care in the community. A mixed-methods approach was used to investigate the views of LAC participants about the course and cultural differences in relation to care and nursing at the end of life in the border region of Germany and Denmark. One-day workshops were held, including Last Aid courses in German and Danish, focus group interviews, and open discussions by the participants. The results show that almost all participants appreciate the LAC as an option to talk and learn about death and end-of-life care. The informants find individual differences more important than cultural differences in end-of-life care but describe differences connected to regulations and organization of services across the border. Suggestions for adaptation and improvement of the LAC include the topics of organization and support across the border, religions, and cultures, and supporting people in grief. The findings of the study will inform a revision of the Last Aid curriculum and future projects across the border and will help to include the views of minorities.

Process, content, and experiences of delivering the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the Danish specialised palliative care setting.

PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) has shown positive effects in the Danish specialised palliative care (SPC) setting. Here, we explore the process, content, and experiences of delivering the CSNAT-I. METHODS: Data were collected during a stepped wedge cluster randomised controlled trial investigating the impact of the CSNAT-I in the Danish SPC setting in 2018-2019. Data were obtained from the CSNAT (tool) completed by caregivers, from health care professionals' (HCPs') written documentation of the CSNAT-I, and from semi-structured interviews with HCPs. RESULTS: The study population consisted of the 130 caregivers receiving a first CSNAT-I within 13 days of study enrolment, the 93 caregivers receiving a second CSNAT-I 15-27 days after enrolment, and the 44 HCPs delivering the intervention. Top three domains of unmet caregiver support needs reported in the CSNAT-I were: "knowing what to expect in the future," "dealing with feelings and worries," and "understanding the illness." These domains together with "knowing who to contact if concerned" and "talking to the patient about the illness" were also the domains most frequently prioritised for discussion with HCPs. According to HCPs, most often support delivered directly by HCPs themselves during the actual contact (e.g., listening, advice, information) was sufficient. Overall, HCPs experienced the CSNAT-I as constructive and meaningful, and difficulties in delivering the intervention were rarely an issue. CONCLUSION: The support needs reported by caregivers confirm the relevance of the CSNAT-I. HCPs' overall experiences of the clinical feasibility and relevance of the CSNAT-I were very positive. ClinicalTrials.gov ID: NCT03466580. Date of registration: March 1, 2018.

Protocol for an integrative review: patient and families' perspectives on telehealth in palliative care.

INTRODUCTION: Increases in the use of telehealth in palliative care (telepalliative care) prior to, and during, the COVID-19 pandemic have resulted in a proliferation of studies on the topic. While knowledge is building on how providers and recipients adapt to telepalliative care, no reviews have, as of yet, examined telepalliative care from a patient and family perspective. Therefore, the aim of this integrative review is to explore patients and families' perspectives on telepalliative. METHODS AND ANALYSIS: An integrative review will be performed inspired by the methodology of Remmington and Toronto from March 2022 to December 2022. Medline, Embase, PsycINFO and CINAHL will be searched for primary peer-reviewed studies that describe telepalliative care from patient and families' perspectives. Limiters will be used for age; 18 years+, time; 10 years, and language; English and Danish. Hand searches of authors of included articles and reference lists of included articles will be performed. Two reviewers will independently screen and appraise selected articles using the Mixed Method Appraisal Tool. Conflicts will be resolved through discussions with a third reviewer. Data will be extracted independently by two reviewers into a data matrix with predefined headings and analysed using thematic analysis. Findings will be reported thematically, summarised into a thematic synthesis and discussed in relation to relevant literature. ETHICS AND DISSEMINATION: Ethical approval is not required for this review. Results will be published in an international peer-reviewed journal and presented at a relevant international conference. Reporting of this protocol was guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses Protocol checklist and prospectively reported to PROSPERO (CRD42022301206).

Last Aid Courses as measure for public palliative care education for adults and children-a narrative review.

OBJECTIVE: To provide a narrative overview of the current knowledge on Last Aid Courses (LAC) and experiences from the implementation process in different countries. BACKGROUND: Major challenges for public health palliative care include supporting all people who wish to die at home and educating the public about death, dying and palliative care. LAC commenced in 2015 in order to educate and empower citizens to participate in end-of-life care and to improve the public debate about death and dying. The International Last Aid project and the International Last Aid working group were established to provide and evaluate public palliative care education (PPCE) using LAC. METHODS: A literature search in PubMed/Medline was performed and a narrative overview of the existing literature on LAC and PPCE is provided. In addition, experiences from the implementation process are presented. CONCLUSIONS: An International Last Aid working group was established with representatives from different countries and national organisations. This group revises the curriculum and contents of LAC in regular intervals with the latest revision in October 2020. Scientific evaluation of LAC is coordinated by the international Last Aid Research Group Europe (LARGE). Work on LAC has commenced in 18 countries. The overall results show that LAC are feasible and very well accepted in many different countries and cultures. Adults, children, and other groups, such as hospital employees and police officers, have participated in LAC. LAC for citizens is also possible in an online course format that was established and tested during the COVID-19 pandemic. Scientific work on the effects of LAC and cultural issues connected to LAC are ongoing in a number of countries. LAC are feasible and well accepted by citizens in different countries. The courses can contribute to a public debate on death, dying and palliative care and may contribute to empowering citizens in providing end-of-life care.

Lessons Learned from Introducing Last Aid Courses at a University Hospital in Germany.

In recent years, so called "Last Aid courses", concerning end-of-life care for people dying, have successfully been established in community settings in several European countries, Australia, and South-America. To date, they have not been evaluated in hospital settings, where educational needs (concerning care of the dying) are especially high, and may differ from the general population. To evaluate if Last Aid courses are feasible in hospital settings, and if informational needs of hospital staff are met by the curriculum, we introduced Last Aid courses at a university hospital. Five courses were offered; participants of courses 1 and 2 completed surveys with open-ended questions; the answers were used to develop the evaluation questionnaire employed in courses 3-5. In these three courses, 55 of the 56 participants completed an evaluation survey to explore their learning goals and obtain feedback. Courses were fully booked; participants were heterogeneous with regard to their professional background. The most prevalent learning goals were "preparation for emotional aspects in care of dying" (65.5% ratings "very important"), "preparation for medical/care aspects in care of dying" (60.0%), and "knowledge of supportive services and facilities" (54.5%). Overall, the evaluation showed that Last Aid courses were more suitable to educate non-medical hospital staff about care of the dying. Medical staff, in contrast to non-medical staff, more often requested courses with an extended curriculum in order to meet their learning goals. Last Aid courses were well accepted and helped to reduce information deficits on care of the dying in a heterogeneous population of hospital staff.

Patients' and Relatives' Preferences for a Palliative/Oncology Day Ward and Out-of-Hours Telemedicine-An Interpretive Description.

Demographical challenges require adaptation and tailoring of services to suit palliative patients' and relatives' needs. Therefore, an interpretive descriptive study was performed to explore patients' and relatives' preferences for the establishment of a day ward and out-of-hours telemedicine. Semi-structured interviews were performed, and data were analysed using thematic analysis. Participants included patients (n = 12) and relatives (n = 5). Three themes emerged: (1) 'Transport burden' relates to transition from home-to-hospital-to-home and acknowledges the strain placed on patients and relatives. (2) 'Role of relatives' contemplates how the role of families in patient care influences patient preferences. (3) 'Telemedicine-preferences and concerns' covers preferences and concerns related to telemedicine in palliative care. The burden of transport and living alone play substantial roles in preferences for place of treatment. Relatives of palliative patients who avail of a day ward and telemedicine may experience an increase in the burden of care. Recognition of concerns pertinent to palliative patients and relatives is an important step in planning new services in palliative care. Concerns may be mitigated by rethinking referral guidelines, incorporating voluntary services, early integration of telemedicine into palliative care and examining patients and relatives' expectations to care, but requires further research.

First Experiences with Online Last Aid Courses for Public Palliative Care Education during the COVID-19 Pandemic.

The Last Aid course aims to teach public palliative care by increasing public awareness and empowering people about the role of the individual in the death of loved ones. The Covid-19 pandemic, however, has altered educational methods prohibiting classroom settings. Therefore, an online course was created to enable continued and safe public palliative care education. A mixed-methods study was performed to examine the feasibility of delivering the Last Aid course online. Data collection included participant questionnaires with qualitative and quantitative data, observations and a focus group discussion. Data were analyzed using descriptive analysis and qualitative description. In total, 15 online Last Aid courses were held, 174 participants took part in the study and 92 completed questionnaires were included. Findings revealed overall course satisfaction for the online courses in line with previous findings for classroom teaching. The online platform enabled course participation from people previously unable or unwilling to attend, namely caregivers to dying relatives and younger people. Instructors displayed an ability to teach online. However, some instructors expressed frustration over reduced interaction and technical challenges, which was echoed by participant ratings showing that many lacked social networking with fellow participants. Nonetheless, this pilot study demonstrates the feasibility of the online Last Aid course. Attention must be given to increasing both participant-to-participant and instructor-to-participant interaction. More research on the long-term effects of Last Aid courses is needed.

Effect of the Carer Support Needs Assessment Tool intervention (CSNAT-I) in the Danish specialised palliative care setting: a stepped-wedge cluster randomised controlled trial.

BACKGROUND: The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark. METHODS: A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up. RESULTS: A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers' well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes. CONCLUSION: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers' experience of the interaction with healthcare professionals. TRIAL REGISTRATION NUMBER: NCT03466580.

District nurses' views on and experiences with a telemedicine educational programme in palliative care.

BACKGROUND: Medical advancements, limited resources and shifting demographics have increased the number of patients with palliative care needs in primary care. To address educational needs, the specialised palliative care team of South Jutland, Denmark, created a telemedicine educational programme in palliative care to empower district nurses. AIM: The study aimed to explore district nurses' views on and experiences with a telemedicine educational programme in palliative care. RESEARCH METHODS: A qualitative explorative study based on interpretive description was conducted. Data collection consisted of four focus group interviews with district nurses from three municipalities, supplemented by participant observations and a focus group interview with teachers from the specialised palliative care team. Data were analysed using predominately inductive thematic analysis. RESULTS: District nurses (n = 15) who participated in the programme and members of the specialised palliative care team (n = 6) who taught the programme were included. Analysis revealed the following advantages: reaffirming and updating existing knowledge, reduced professional isolation and creation of a forum to promote knowledge dissemination. A disadvantage was limited interaction between teachers and district nurses, questioning suitability for teaching complex palliative care. Initial technical problems affected motivation to participate. Organisational support differed between participating municipalities resulting in varying degrees of programme integration. Despite advantages of IT-expert-led sessions, key-nurse-led sessions in smaller groups proved more beneficial, suggesting a combination of IT support and key-nurse management to maximise benefits. CONCLUSION: The use of an inter-professional telemedicine educational programme to teach palliative care to district nurses is beneficial. However, programmes should be designed for interactivity and address varying educational needs. Key-nurse roles require managerial and IT support to optimise knowledge dissemination. Further research on implementation of telemedicine education in palliative care is needed.

Last Aid Course. An Education For All Citizens and an Ingredient of Compassionate Communities.

Due to demographic changes, the need for palliative care in the community and at home is expected to rise in the coming years. The care that is given by family members and general practitioners plays a vital role in basic palliative care. Knowledge in palliative care is very limited or totally absent in most communities, and information about the effects of educational procedures in teaching non-professionals in basic palliative care is sparse. In the Last Aid course, the public knowledge approach and the initial experiences from the implementation process are described. In addition, a review of the literature on educational efforts regarding palliative care for non-professionals and the existing literature on Last Aid courses is provided. An international working group has established a curriculum for Last Aid courses based on four teaching hours (45 minutes each). The feasibility of Last Aid courses for the public has been tested in pilot courses. The experiences with Last Aid courses in different countries are overall very positive. Last Aid courses are well-attended. The evaluation of questionnaires in a German pilot study has shown a favorable response. Last Aid courses may form the educational basis of compassionate communities, and are well-suited to inform the public about palliative care and end-of-life care.

A European multicenter study on systematic ethics work in nursing homes.

BACKGROUND: There are many existing ethical challenges in nursing homes. Although different methods and approaches to discussing the ethical challenges have been established, systematic ethics work is not yet a standard in all nursing homes. The aim of the present study was to explore ethical challenges and approaches to implementing systematic ethics work in nursing homes. METHODS: Data from five institutions in Austria, Germany and Norway were collected, and a mixed-methods two-tiered study approach was chosen. Documentation of ethics discussions was combined with qualitative focus group interviews with staff members regarding the implementation of systematic ethics work in nursing homes. RESULTS: One hundred and five ethics meetings were documented. The main topics were advance care planning, ethical challenges associated with artificial nutrition, hospitalisation and end-of-life decision-making. Of the meetings, 33% focused mainly on everyday ethical challenges. In 76% of prospective case discussions, agreements about a solution were reached; however, in 29% of these no residents or relatives participated. The advantages of systematic ethics work described by the staff were enhanced openness and dialogue, overall, and a greater ethical awareness. Many voiced a need for structure and support from the administration. CONCLUSIONS: Systematic ethics work is greatly appreciated by the staff and helps to reach a consensus in the majority of case discussions. It should be implemented in all nursing homes. Attention to everyday ethical challenges is important. The participation of relatives and physicians could be improved. The participation of the residents' in ethics discussions should be encouraged to strengthen their autonomy and dignity.