The generalist-plus-specialist palliative care model is endorsed worldwide. In the Netherlands, the competencies and profile of the generalist provider of palliative care has been described on all professional levels in nursing and medicine. However, there is no clear description of what specialized expertise in palliative care entails, whereas this is important in order for generalists to know who they can consult in complex palliative care situations and for timely referral of patients to palliative care specialists. Objective: To gain insight in the roles and competencies attributed to palliative care specialists as opposed to generalists. Methods: A scoping review was completed based on PRISMA-ScR guidelines to explore the international literature on the role and competence description of specialist and expert care professionals in palliative care. Databases Embase.com, Medline (Ovid), CINAHL (Ebsco) and Web of Science Core Collection were consulted. The thirty-nine included articles were independently screened, reviewed and charted. Thematic codes were attached based on two main outcomes roles and competencies. Results: Five roles were identified for the palliative care specialist: care provider, care consultant, educator, researcher and advocate. Leadership qualities are found to be pivotal for every role. The roles were further specified with competencies that emerged from the analysis. The title, roles and competencies attributed to the palliative care specialist can mostly be applied to both medical and nursing professionals. Discussion: The roles and competencies derived from this scoping review correspond well with the seven fields of competence for medical/nursing professionals in health care of the CanMEDS guide. A specialist is not only distinguished from a generalist on patient-related care activities but also on an encompassing level. Clarity on what it entails to be a specialist is important for improving education and training for specialists. Conclusion: This scoping review adds to our understanding of what roles and competencies define the palliative care specialist. This is important to strengthen the position of the specialist and their added value to generalists in a generalist-plus-specialist model
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OBJECTIVES: To improve transmural palliative care for acutely admitted older patients, the PalliSupport transmural care pathway was developed. Implementation of this care pathway was challenging. The aim of this study was to improve understanding why the implementation partly failed.DESIGN: A qualitative process evaluation study.SETTING/PARTICIPANTS: 17 professionals who were involved in the PalliSupport program were interviewed.METHODS: Online semi-structured interviews. Thematic analysis to create themes according to the implementation framework of Grol & Wensing.RESULTS: From this study, themes within four levels of implementation emerged: 1) The innovation: challenges in current palliative care, the setting of the pathway and boost for improvement; 2) Individual professional: feeling (un)involved and motivation; 3) Organizational level: project management; 4) Political and economic level: project plan and evaluation.CONCLUSION AND IMPLICATIONS: We learned that the challenges involved in implementing a transmural care pathway in palliative care should not be underestimated. For successful implementation, we emphasize the importance of creating a program that fits the complexity of transmural palliative care. We suggest starting on a small scale and invest in project management. This could help to involve all stakeholders and anticipate current challenges in palliative care. To increase acceptance, create one care pathway that can start and be used in all care settings. Make sure that there is sufficient flexibility in time and room to adjust the project plan, so that a second pilot study can possibly be performed, and choose a scientific evaluation with both rigor and practical usefulness to evaluate effectiveness.
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In the Netherlands, palliative care is provided by generalist healthcare professionals (HCPs) if possible and by palliative care specialists if necessary. However, it still needs to be clarifed what specialist expertise entails, what specialized care consists of, and which training or work experience is needed to become a palliative care special‑ist. In addition to generalists and specialists, ‘experts’ in palliative care are recognized within the nursing and medical professions, but it is unclear how these three roles relate. This study aims to explore how HCPs working in palliative care describe themselves in terms of generalist, specialist, and expert and how this self-description is related to their work experience and education. Methods A cross-sectional open online survey with both pre-structured and open-ended questions among HCPs who provide palliative care. Analyses were done using descriptive statistics and by deductive thematic coding of open-ended questions. Results Eight hundred ffty-four HCPs flled out the survey; 74% received additional training, and 79% had more than fve years of working experience in palliative care. Based on working experience, 17% describe themselves as a generalist, 34% as a specialist, and 44% as an expert. Almost three out of four HCPs attributed their level of expertise on both their education and their working experience. Self-described specialists/experts had more working experience in palliative care, often had additional training, attended to more patients with palliative care needs, and were more often physicians as compared to generalists. A deductive analysis of the open questions revealed the similarities and dis‑ tinctions between the roles of a specialist and an expert. Seventy-six percent of the respondents mentioned the impor‑tance of having both specialists and experts and wished more clarity about what defnes a specialist or an expert, how to become one, and when you need them. In practice, both roles were used interchangeably. Competencies for the specialist/expert role consist of consulting, leadership, and understanding the importance of collaboration. Conclusions Although the grounds on which HCPs describe themselves as generalist, specialist, or experts difer, HCPs who describe themselves as specialists or experts mostly do so based on both their post-graduate education and their work experience. HCPs fnd it important to have specialists and experts in palliative care in addition to gen‑eralists and indicate more clarity about (the requirements for) these three roles is needed.
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Background: Increasing attention to palliative care for the general population has led to the development of various evidence-based or consensus-based tools and interventions. However, specific tools and interventions are needed for people with severe mental illness (SMI) who have a life-threatening illness. The aim of this systematic review is to summarize the scientific evidence on tools and interventions in palliative care for this group. Methods: Systematic searches were done in the PubMed, Cochrane Library, CINAHL, PsycINFO and Embase databases, supplemented by reference tracking, searches on the internet with free text terms, and consultations with experts to identify relevant literature. Empirical studies with qualitative, quantitative or mixed-methods designs concerning tools and interventions for use in palliative care for people with SMI were included. Methodological quality was assessed using a critical appraisal instrument for heterogeneous study designs. Stepwise study selection and the assessment of methodological quality were done independently by two review authors. Results: Four studies were included, reporting on a total of two tools and one multi-component intervention. One study concerned a tool to identify the palliative phase in patients with SMI. This tool appeared to be usable only in people with SMI with a cancer diagnosis. Furthermore, two related studies focused on a tool to involve people with SMI in discussions about medical decisions at the end of life. This tool was assessed as feasible and usable in the target group. One other study concerned the Dutch national Care Standard for palliative care, including a multicomponent intervention. The Palliative Care Standard also appeared to be feasible and usable in a mental healthcare setting, but required further tailoring to suit this specific setting. None of the included studies investigated the effects of the tools and interventions on quality of life or quality of care. Conclusions: Studies of palliative care tools and interventions for people with SMI are scarce. The existent tools and intervention need further development and should be tailored to the care needs and settings of these people. Further research is needed on the feasibility, usability and effects of tools and interventions for palliative care for people with SMI.
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Every healthcare professional (HCP) in the Netherlands is expected to provide palliative care based on their initial education. This requires national consensus and clarity on the quality and goals of palliative care education and accessible education opportunities nationwide. These requirements were not met in the Netherlands, posing a major obstacle to improving the organization and delivery of palliative care. Therefore, a program, Optimizing Education and Training in Palliative Care (O2PZ), was established to improve palliative care education on a national level. Objectives: The main task of the O2PZ program from 2018 to 2021 was to implement and improve palliative care education in initial education for nursing and medical professionals. The program’s ultimate goal was that every HCP be sufficiently educated to provide highquality generalist palliative care. Design: The O2PZ program consists of four projects to improve and consolidate generalist palliative care education nationwide. Methods: All projects used a participatory approach, that is, participatory development, implementation, and co-creation with stakeholders, mainly HCPs and education developers. Appreciative inquiry was used to assess, improve, and integrate existing local palliative care education initiatives. Results: (1) Establishment of an Education Framework for palliative care for all HCPs, including an interprofessional collaboration model; (2) optimization of palliative care education in the (initial) curricula of vocational education institutions and (applied) universities; (3) establishment of an online platform to disseminate materials to improve palliative care education; and (4) installment of seven regional palliative care education hubs, of which one hub was devoted to pediatric palliative care, as well as one national hub. Discussion: We discuss some lessons learned and challenges in accomplishing the goals of the O2PZ program in 2018–2021 and address how these challenges were dealt with. We maintain that co-creation with stakeholders at policy, organizational, and operational levels, as well as ongoing communication and collaboration, is essential to consolidating and implementing results. Conclusion: Over the past 4years, we have improved generalist palliative care education nationwide for all HCPs through four projects in which we collaborated closely with stakeholders. This has resulted in more attention to and implementation of palliative care in education, a national Education Framework for palliative care, including an interprofessional collaboration model, an online platform for palliative care education, and palliative care education hubs covering all regions of the Netherlands.
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Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein’s involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
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With an increasingly ageing population there will be a rising demand for palliative care, including from older migrants and ethnic minorities. While many (future) physicians are unfamiliar with specific needs of older migrants and ethnic minorities regarding care and communication in palliative care, this may be challenging for them to deal with. Moreover, even many medical teachers also feel unprepared to teach palliative care and culturally sensitive communication to students. In order to support medical teachers, we suggest twelve tips to teach culturally sensitive palliative care to guide the development and implementation of teaching this topic to medical students. Drawn from literature and our own experiences as teachers, these twelve tips provide practical guidance to both teachers and curriculum designers when designing and implementing education about culturally sensitive palliative care.
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Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each other's frames of reference and underlying values seems important. Wonder Lab practices provide a space to explore these differences by focusing together on life phenomena in curious and Socratic ways. Wonder Labs were organised with parents, healthcare professionals, and students involved in Dutch paediatric palliative care. The aim of this study was to develop an understanding of how participants experienced participating in Wonder Labs. We conducted twenty in-depth interviews with Wonder Lab participants and used inductive thematic analysis for data interpretation. Five themes were identified: Slowing down, Appreciating stories, Becoming vulnerable, Opening up and diving in, and Reframing perspectives. Participating in Wonder Labs allowed mothers, healthcare professionals, and students to contribute to deepening experiences and gain an expanded understanding of what is at play in caring for children with life-limiting and life-threatening conditions. Through working in pluralised groups, frames of reference and understandings complemented each other and could change. Participants often adopted a more open attitude towards others involved in care after participating and adapted day-to-day practices. Deliberating within paediatric palliative care on sensitive issues and their underlying personal and professional beliefs and values must be part of working together, without specific care situations being the catalyst. This may foster the mutual understanding needed in searching for quality of life, death, and bereavement.
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Background: Pain assessment is a necessary step in pain management in older people in palliative care. In older people, pain assessment can be challenging due to underreporting and atypical pain manifestations by other distressing symptoms. Anxiety, fatigue, loss of appetite, insomnia, dyspnoea, and bowel problems correlate with pain in palliative care patients. Insight into these symptoms as predictors may help to identify the underlying presence of pain. This study aimed to develop a prediction model for pain in independently living frail older people in palliative care.Methods: In this cross-sectional observational study, community-care nurses from multiple organizations across the Netherlands included eligible patients (life expectancy < 1 year, aged 65+, independently living and frail). The outcome pain and symptoms were assessed by means of the Utrecht Symptom Diary. Also, demographic and illness information, including relevant covariates age, sex and living situation, was collected. Multivariable logistic regression and minimum Akaike Information Criterion(AIC) were used for model development and Receiver Operating Characteristics(ROC)-analysis for model performance. Additionally, predicted probability of pain are given for groups differing in age and sex.Results: A total of 157 patients were included. The final model consisted of insomnia(Odds Ratio[OR]=2.13, 95% Confidence Interval[CI]=1.013-1.300), fatigue(OR=3.47, 95% CI=1.107-1.431), sex(female)(OR=3.83, 95% CI=2.111-9.806) and age(OR=-1.59, 95% CI=0.922-1.008) as predicting variables. There is an overall decreasing trend for age, older persons suffer less from pain and females have a higher probability of experiencing pain. Model performance was indicated as fair with a sensitivity of 0.74(95% CI=0.64-0.83) and a positive predictive value of 0.80(95% CI=0.70-0.88).Conclusion: Insomnia and fatigue are predicting symptoms for pain, especially in women and younger patients. The use of a symptom diary in primary care can support the identification of pain.
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Background: Transmural palliative care interventions aim to identify older persons with palliative care needs and timely provide advance care planning, symptom management, and coordination of care. Nurses can have an important role in these interventions; however, their expertise is currently underused. A new transmural care pathway with a central role for the community care registered nurse in advance care planning aims to contribute to the quality of palliative care for older persons. Objective: To examine the perspectives of community nurses on the feasibility of a new transmural care pathway for advance care planning for older persons. Design: A qualitative study design using semi-structured interviews. Setting(s): Interviews were performed with community nurses of three participating homecare organizations in the Netherlands between March and May 2023. Participants: 19 community nurses. Methods: A topic guide was based on (1) challenges in advance care planning identified from the literature and (2) concepts that are important in assessing the feasibility of complex healthcare interventions provided by the Normalisation Process Theory framework. A combined inductive and deductive thematic analysis was performed. Results: Four themes were identified: views on the transmural care pathway, community nurses’ needs to fulfil their role, key points regarding implementation, and evaluation of the new practice. In general, community nurses were positive about the feasibility of the new practice as it provided a more structured work process that could facilitate interprofessional collaboration and improve the quality of palliative care. Overall, the feasibility of the new practice, from community nurses perspective, was determined by (1) clear roles and responsibilities in the transmural care pathway, (2) standardized registration of advance care planning, and (3) close involvement of community nurses in the whole implementation process. Conclusions: We highlighted important factors, from the perspectives of community nurses, that need to be considered in the implementation of a new transmural care pathway for advance care planning. A clear division of roles and responsibilities, standardized registration of advance care planning, and involvement of community nurses during the whole implementation process were mentioned as important enabling factors. This knowledge might contribute to successful implementation of a transmural care pathway that aims to enhance the quality of palliative care for older persons. Tweetable abstract: Community nurses’ perspectives on the feasibility of a transmural care pathway for advance care planning for older persons.
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