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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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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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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