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.

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.

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.

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.

They know!-Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes.

BACKGROUND: Residents living in long-term care facilities are a vulnerable population. For many residents, a nursing home is their place of death. Palliative care and end-of-life decisions are important components of their care provision. AIM: To study the views of cognitively able residents and relatives on advance care planning, end-of-life care, and decision-making in nursing homes. DESIGN: A qualitative study with in-depth interviews with nursing home residents and focus group interviews with relatives of nursing home residents. Analysis is based on interpretive description. SETTING/PARTICIPANTS: In total, 43 informants from nine nursing homes participated in the study (25 nursing home residents and 18 relatives). All included residents had capacity to provide informed consent and lived in long-term care. RESULTS: The main findings of this study were the differing views about decision-making and advance care planning of residents and relatives. Residents do trust relatives and staff to make important decisions for them. The relatives are in contrast insecure about the residents' wishes and experience decision-making as a burden. The majority of the residents had not participated in advance care planning. None of the residents stated challenges connected to end-of-life care or mentioned the wish for euthanasia. CONCLUSION: Although most residents seem to be satisfied with decision-making and end-of life care, there is a need for systematic advance care planning. Advance care planning could help to explore future wishes for care and ease decision-making for the relatives, physicians, and staff and should be offered to all cognitively able nursing homes residents.

Nothing to complain about? Residents' and relatives' views on a "good life" and ethical challenges in nursing homes.

BACKGROUND: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives' view, but substantial knowledge about the residents' perspective is lacking. OBJECTIVE: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. RESEARCH DESIGN: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. PARTICIPANTS AND RESEARCH CONTEXT: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. ETHICAL CONSIDERATIONS: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. FINDINGS AND DISCUSSION: The main ethical challenges in Norwegian nursing homes from the residents' and relatives' perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. CONCLUSION: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to "everyday ethical issues."

Ethical challenges in nursing homes--staff's opinions and experiences with systematic ethics meetings with participation of residents' relatives.

BACKGROUND: Many ethical problems exist in nursing homes. These include, for example, decision-making in end-of-life care, use of restraints and a lack of resources. AIMS: The aim of the present study was to investigate nursing home staffs' opinions and experiences with ethical challenges and to find out which types of ethical challenges and dilemmas occur and are being discussed in nursing homes. METHODS: The study used a two-tiered approach, using a questionnaire on ethical challenges and systematic ethics work, given to all employees of a Norwegian nursing home including nonmedical personnel, and a registration of systematic ethics discussions from an Austrian model of good clinical practice. RESULTS: Ninety-one per cent of the nursing home staff described ethical problems as a burden. Ninety per cent experienced ethical problems in their daily work. The top three ethical challenges reported by the nursing home staff were as follows: lack of resources (79%), end-of-life issues (39%) and coercion (33%). To improve systematic ethics work, most employees suggested ethics education (86%) and time for ethics discussion (82%). Of 33 documented ethics meetings from Austria during a 1-year period, 29 were prospective resident ethics meetings where decisions for a resident had to be made. Agreement about a solution was reached in all 29 cases, and this consensus was put into practice in all cases. Residents did not participate in the meetings, while relatives participated in a majority of case discussions. In many cases, the main topic was end-of-life care and life-prolonging treatment. CONCLUSIONS: Lack of resources, end-of-life issues and coercion were ethical challenges most often reported by nursing home staff. The staff would appreciate systematic ethics work to aid decision-making. Resident ethics meetings can help to reach consensus in decision-making for nursing home patients. In the future, residents' participation should be encouraged whenever possible.

"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.

McArdle's disease (glycogen storage disease type V) and anesthesia--a case report and review of the literature.

McArdles disease (glycogen storage disease type v) is a rare condition in which energy-metabolism in the muscle is hampered. A case report is presented and the possible risk for perioperative complications including malignant hyperthermia is discussed. A checklist for the anesthesiological management of patients with McArdles disease is provided. A short overview of anesthesiological challenges and perioperative complications of other glycogen storage diseases is given.

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.

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.

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.

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).

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.

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.