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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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 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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Background: Palliative care patients desire more symptom management interventions that are complementary to their medical treatment. Within the multi-professional team, nurses could help support pain management with non-pharmacological interventions feasible for their practice and adaptable to palliative care patients’ needs.Objectives: The objective was to identify non-pharmacological interventions feasible in the nursing scope of practice affecting pain in palliative care patients.Design: A systematic review.Data sources and methods: A defined search strategy was used in PubMed, CINAHL, PsycINFO, and Embase. Search results were screened double-blinded. Methodological quality was double-appraised with the Joanna Briggs Institute Critical Appraisal Tools. Data were extracted from selected studies and the findings were summarized. The methodological quality, quantity of studies evaluating the same intervention, and consistency in the findings were synthesized in a best-evidence synthesis to rank evidence as strong, moderate, limited, mixed, or insufficient.Results: Out of 2385 articles, 22 studies highlighted non-pharmacological interventions in the nursing scope of practice. Interventions using massage therapy and virtual reality demonstrated most evidentiary support for pain management, while art therapy lacked sufficient evidence. Mindful breathing intervention showed no significant reduction in pain. Hypnosis, progressive muscle-relaxation-interactive-guided imagery, cognitive-behavioral audiotapes, wrapped warm footbath, reflexology, and music therapy exhibited promising results in pain reduction, whereas mindfulness-based stress reduction program, aromatherapy, and aroma-massage therapy did not.Conclusion: Despite not all studies reaching significant changes in pain scores, non-pharmacological interventions can be clinically relevant to palliative care patients. Its use should be discussed for its potential value and nurses to be trained for safe practice. Methodologically rigorous research for non-pharmacological interventions in nursing scope of practice for pain relief in palliative care patients is necessary.
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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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Background and aim – Palliative care consists of a multitude of factors, such as psychological and spiritual, in addition to or integrated with nursing and facility management. Stewart, Teno, Patrick, & Lynn (1999) have developed a framework that helps understand how structure and process affect the quality of dying. Exploration of the environment of patients in palliative care in hospices, nursing homes, and hospitals by mapping social-spatial experiences to advance the quality of dying will add to the body of knowledge.Methods / Methodology – 57 Employees, volunteers, supervisors, patients, and family were interviewed semi-structured by 7 bachelor thesis students on facilities in Dutch palliative care, after which secondary analysis was performed by one of the authors.Results – Respondents pointed out the importance of spaces and services for spirituality, and indicated that they feel that a sense of control over facilities is important. Connections have been found between spirituality and facilities, and differences between types of roles and types of accommodation. The study illustrates important elements of facilities, such as domestic furniture or decoration, and to the role of spirituality.Originality – Across the field of palliative care in the North of the Netherlands, bachelor thesis students have interviewed staff, volunteers, patients, and family about an interrelated multitude of aspects, including spaces, services, and spirituality.Practical or social implications – Application of findings can potentially contribute to improved alignment of facilities with the needs of patients and their loved ones in palliative care. Differences in opinions of the different groups require further investigation.
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Generalists in palliative care and professionals with specialized expertise, including palliative care nurses, achieve high-quality palliative care. To strengthen their role, it is essential to understand the tasks palliative care nurses perform and their position within the organizations. We aim to accomplish this understanding and explore facilitators and barriers to taking on the role as specialized nurses from both the nurses’ and managers’ perspectives. A sequential mixed-method design combined an online survey, followed up by five focus groups. Analysis involved descriptive statistics and thematic coding. A total of 234 palliative care nurses across various care settings answered the survey. They primarily provided physical care (88%), with less focus on psychological (72%), social (68%), and spiritual (68%) domains, and were consulted for fewer than half of their activities. Having no job descriptions often occurred (from 78% in home care and nursing homes to 44% in hospitals). Hospital nurses were more involved in advisory teams (56%) than those in other settings (26% −28%). Nurses showed leadership by promoting generalists’ expertise, connecting partners, serving as role models, and advocating for palliative care. Focus groups with twelve nurses and nine managers identified facilitators and barriers that palliative care nurses and their managers encounter in embedding their roles and positions. These covered: (1) distinction between generalist and specialist palliative care, (2) collaboration, (3) job descriptions, (4) leadership, (5) visibility, (6) funding and reimbursement. Palliative care nurses fulfill an essential role but experience ambiguity about their role and position. They and their managers emphasized the importance of leadership and advocating for palliative care in their organizations. Visibility, funding, reimbursement, and collaboration are facilitators and barriers to their role and position. There are notable areas for improvement, including joining a palliative care advisory team, having a job description, and finding ways to demonstrate cost-effectiveness
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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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This speech discusses how the professorship intends to support practitioners in the nursing domain and contribute to shaping nursing leadership and each person's professional individuality. The title of the speech, “Notes on Nursing 2.0,” is particularly intended to emphasize the need for these changes in the nursing domain. Not by assuming that nothing has changed in care and nursing since Nightingale's time. There has. Being educated in the professional domain is not only a given but a requirement. The knowledge domain of care and nursing has developed far and wide in nursing diagnostics and standards. Nursing science research, which Nightingale once started as the first female statistician in the British Kingdom, has firmly established itself in education and practice. Wanting to be of significance to others out of compassion is still the professional motivation, but there is no longer a subservient servitude (Cingel van der, 2012). At the same time, wholehearted leadership is not yet taken for granted in daily practice and optimal professional practice falters due to an equality principle of differently educated caregivers and nurses that has been held for too long. That is the need for change to which this 2.0 version “Notes on Nursing” and the lectorate want to contribute in the coming years. Chapter 1, through the metaphors in the story “The Cat Who Looked at the King,” describes the vision of emancipatory action research and the change principles that the lectorate will deploy. Chapter 2 contains the reason, mission and lines of research that are interrelated within the lectorate. Chapters 3 and 4 address the themes of identity and leadership, discussing their interrelationship with professional practice and developing a research culture. In addition, specific aspects that influence practice and work culture today are addressed, and how the lectorate contributes specifically to the development of nursing leadership and the formation of professional identity in the relevant domain is described. Chapter 5 contains a summary of the principles on which the research program is based, as well as information on current and future projects. Chapter 6 provides background information on the lector and the members of the knowledge circle.
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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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