Nordic Specialist Course in Palliative Medicine: Evaluation and Impact on the Development of Palliative Medicine in the Nordic Countries: A Survey among Participants from Seven Courses 2003-2017

Background: The five Nordic Associations for palliative medicine (PM) have since 2003 organized a common specialist course for six weeks in two years. Aim: To describe the course: participants, evaluations, impact on participants' careers, and on the development of PM in the Nordic countries. Methods: Information on participants taken from the course archive and national registries. A web survey sent to graduates from the courses 2003–2013 (n = 150) and 2013–2017 (n = 72). Results: Mean age at course start was 46.9 years; 66% were women. Mean overall evaluation score 5.7 (range 5.4–6.0, max 7.0). Survey response rate 84% (n = 186); 80% of respondents were working in PM, the majority as leaders, >90% engaged in teaching PM. About 40% were active in PM associations, lobbying, and guideline development. Conclusion: The Nordic Specialist Course in PM has had a profound impact on the participants' postcourse careers, influencing the development of PM in the Nordic countries.publishedVersio

Nordic Specialist Course in Palliative Medicine: Evaluation and Impact on the Development of Palliative Medicine in the Nordic Countries: A Survey among Participants from Seven Courses 2003-2017.

To access publisher's full text version of this article, please click on the hyperlink in Additional Links field or click on the hyperlink at the top of the page marked DownloadBackground: The five Nordic Associations for palliative medicine (PM) have since 2003 organized a common specialist course for six weeks in two years. Aim: To describe the course: participants, evaluations, impact on participants' careers, and on the development of PM in the Nordic countries. Methods: Information on participants taken from the course archive and national registries. A web survey sent to graduates from the courses 2003-2013 (n = 150) and 2013-2017 (n = 72). Results: Mean age at course start was 46.9 years; 66% were women. Mean overall evaluation score 5.7 (range 5.4-6.0, max 7.0). Survey response rate 84% (n = 186); 80% of respondents were working in PM, the majority as leaders, >90% engaged in teaching PM. About 40% were active in PM associations, lobbying, and guideline development. Conclusion: The Nordic Specialist Course in PM has had a profound impact on the participants' postcourse careers, influencing the development of PM in the Nordic countries

Nordic Specialist Course in Palliative Medicine: Evaluation and Impact on the Development of Palliative Medicine in the Nordic Countries: A Survey among Participants from Seven Courses 2003-2017

Background: The five Nordic Associations for palliative medicine (PM) have since 2003 organized a common specialist course for six weeks in two years. Aim: To describe the course: participants, evaluations, impact on participants' careers, and on the development of PM in the Nordic countries. Methods: Information on participants taken from the course archive and national registries. A web survey sent to graduates from the courses 2003-2013 (n = 150) and 2013-2017 (n = 72). Results: Mean age at course start was 46.9 years; 66% were women. Mean overall evaluation score 5.7 (range 5.4-6.0, max 7.0). Survey response rate 84% (n = 186); 80% of respondents were working in PM, the majority as leaders, >90% engaged in teaching PM. About 40% were active in PM associations, lobbying, and guideline development. Conclusion: The Nordic Specialist Course in PM has had a profound impact on the participants' postcourse careers, influencing the development of PM in the Nordic countries.</p

Characteristics and fate of patients with rectal cancer not entering a curative-intent treatment pathway: A complete nationwide registry cohort of 3,304 patients

Background: Treatment options for advanced and metastatic rectal cancer have increased during the past decades. However, a considerable proportion of the patients are not eligible for curative treatment, and data on this subset are scarce from a population-based perspective. This study aimed to describe treatment pathways and survival in a national cohort of patients with primary stage IV rectal cancer or stage I-III rectal cancer not eligible for curative treatment. Methods: A national cohort of all patients reported 2008–2015 to the Norwegian Colorectal Cancer Registry with primary metastatic rectal cancer or who did not undergo curative resections for stage I-III rectal cancer was studied with regard to patient characteristics, treatments, and survival. Results: Of 8291 patients diagnosed with rectal cancer, 3304 (39.9%) were eligible for analysis. The majority (76.8%) had metastatic disease, and 23.2% did not undergo curative resections for other reasons. We identified four main treatment journeys: no tumour-directed treatment, 25.1%; resection of the primary tumour, 44.6%; oncological treatment, 28.4%; and R0 resection of the primary tumour and metastases, 1.9%; these translated into ten different treatment pathways. Survival differed considerably between a median of 5.3 months for M1 disease with non-tumour-directed treatment to a five-year survival of 67% for M1 with R0 resection. Conclusion: Almost 40% of all patients with rectal cancer did not enter a curative-intent treatment pathway. The patient journeys and outcomes varied greatly. This large but understudied population warrants further in-depth analyses of treatment efficacy and effects on quality of life.publishedVersio

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives' experiences? A two country survey

Objectives: Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017–2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. Methods: Relatives after cancer deaths in hospitals answered the CODE questionnaire 6–8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient’s remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. Results: 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18–80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. Conclusions: Relatives who had been invited to a conversation about wishes for the patient’s remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient’s final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.publishedVersio

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway.

BackgroundThe ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.Methods194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.ResultsOf the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.ConclusionsOur findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping

Funding models in palliative care: lessons from international experience

Background:Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them.Aim:To assess national models and methods for financing and reimbursing palliative care.Design:Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms.Results:Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following:Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision.Funding is frequently characterised as a mixed system of charitable, public and private payers.The basis on which providers are paid for services rarely reflects individual care input or patient needs.Conclusion:Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries:the iLIVE study

Background:End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration: NCT04678310. Registered 21/12/2020.</p

One chance to get it right: improving clinical handovers for better symptom control at the end of life.

Poor communication contributes to morbidity and mortality, not only in general medical care but also at the end oflife. This leads to issues relating to symptom control and quality of care. As part of an international project focused on bereaved relatives’ perceptions about quality of end-of-life care, we undertook a quality improvement (QI) project in a general hospital in Córdoba city, Argentina. By using two iterative QI cycles, we launched an educational process and introduced a clinical mnemonic tool, I-PASS, during ward handovers. The introduction of the handover tool was intended to improve out-of-hours care. Our clinical outcome measure was ensuring comfort in at least 60% of dying patients, as perceived by family carers, during night shifts in an oncology ward during the project period (March–May 2019). As process-based measures, we selected the proportion of staff completing the I-PASS course (target 60%) and using I-PASS in at least 60% of handovers. Participatory action research was the chosen method. During the study period, 13/16 dying patients were included. We received 23 reports from family carers about the level of patient comfort during the previous night. Sixty-five per cent of healthcare professionals completed the I-PASS training. The percentage of completed handovers increased from 60% in the first Plan-Do-Study-Act (PDSA) cycle to 68% in the second one. The proportion of positive reports about patient comfort increased from 63% (end of the first PDSA cycle) to 87% (last iterative analysis after 3 months). Moreover, positive responses to ‘Did doctors and nurses do enough for the patient to be comfortable during the night?’ increased from 75% to 100% between the first and the second QI cycle. In conclusion, we achieved the successful introduction and staff training for use of the I-PASS tool. This led to improved perceptions by family carers, about comfort for dying patients

Prevalence of distressing symptoms in hospitalised patients on medical wards: A cross-sectional study

<p>Abstract</p> <p>Background</p> <p>Many patients with advanced, serious, non-malignant disease belong to the population generally seen on medical wards. However, little research has been carried out on palliative care needs in this group. The aims of this study were to estimate the prevalence of distressing symptoms in patients hospitalised in a Department of Internal Medicine, estimate how many of these patients might be regarded as palliative, and describe their main symptoms.</p> <p>Methods</p> <p>Cross-sectional (point prevalence) study. All patients hospitalised in the Departments of Internal Medicine, Pulmonary Medicine, and Cardiology were asked to do a symptom assessment by use of the Edmonton Symptom Assessment System (ESAS). Patients were defined as "palliative" if they had an advanced, serious, chronic disease with limited life expectancy and symptom relief as the main goal of treatment.</p> <p>Results</p> <p>222 patients were registered in all. ESAS was completed for 160 patients. 79 (35.6%) were defined as palliative and 43 of them completed ESAS. The patients in the palliative group were older than the rest, and reported more dyspnea (70%) and a greater lack of wellbeing (70%). Other symptoms reported by this group were dry mouth (58%), fatigue (56%), depression (41%), anxiety (37%), pain at rest (30%), and pain on movement (42%).</p> <p>Conclusion</p> <p>More than one third of the patients in a Department of Internal Medicine were defined as palliative, and the majority of the patients in this palliative group reported severe symptoms. There is a need for skills in symptom control on medical wards.</p