PurposePalliative care improves quality of life of patients and relatives facing life-threatening illnesses; it places their needs central (WHO, 2015). It is however unknown if facility design in Dutch hospice care facilities fulfils these needs. This paper aims to establish if services and spaces of hospice care providers match with needs of users.DesignThis explorative study includes a literature review on needs and supporting services and spaces, using evidence-based design and indoor-environment design literature. Semi-structured interviews were conducted with caregivers and support staff.FindingsPatients in the final stages of life need a last refuge that requires a higher standard when compared to regular healthcare environments. The spaces and service delivery processes at hospices seem to be optimal while in other (hospice) care settings users miss adequate spaces and services. In addition, management in care systems needs to reconfigure accordingly in order to offer flexible customisation e.g. allocation of staff. Several space and service requirements have been identified, like domesticity, lay-out, style of décor, space for loved ones, quiet, and personal artefacts.Practical implicationsThe research findings will be used for follow-up research that will result in aligning the designs of spaces and services with needs of hospice care users.Originality/ValueThe role of facility management in palliative care has rarely been studied. Current findings may be regarded as a starting point for further investigation in this area, allowing hospice care to improve its spaces and services in order to meet patients’ and relatives’ needs.
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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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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: 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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Deze handreiking ‘Triage, Advance Care Planning en symptomatische behandeling bij een ernstig verloop van corona binnen de GGZ-instelling of thuis’ hoort bij de Richtlijn GGZ en corona. Bji het maken van de afweging om een patiënt wel/niet in het ziekenhuis te laten opnemen, dan wel of de patiënt wel/niet naar IC kan gaan gelden deze overwegingen: zie bestand.
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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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As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
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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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Background: Team-based palliative care interventions have shown positive results for patients at the end of life in both hospital and community settings. However, evidence on the effectiveness of transmural, that is, spanning hospital and home, team-based palliative care collaborations is limited. Aim: To systematically review whether transmural team-based palliative care interventions can prevent hospital admissions and increase death at home. Design: Systematic review and meta-analysis. Data sources: MEDLINE (Ovid), Embase (Ovid), CINAHL (Ebsco), PsychINFO (Ovid), and Cochrane Library (Wiley) were systematically searched until January 2021. Studies incorporating teams in which hospital and community professionals co-managed patients, hospital-based teams with community follow-up, and case-management interventions led by palliative care teams were included. Data was extracted by two researchers independently. Results: About 19 studies were included involving 6614 patients, of whom 2202 received an intervention. The overall pooled odds ratio of at least one hospital (re)admissions was 0.46 (95% confidence interval (CI) 0.34–0.68) in favor of the intervention group. The highest reduction in admission was in the hospital-based teams with community follow-up: OR 0.21 (95% CI 0.07–0.66). The pooled effect on home deaths was 2.19 (95% CI 1.26–3.79), favoring the intervention, with also the highest in the hospital-based teams: OR 4.77 (95% CI 1.23–18.47). However, studies had high heterogeneity regarding intervention, study population, and follow-up time. Conclusion: Transmural team-based palliative care interventions, especially hospital-based teams that follow-up patients at home, show an overall effect on lowering hospital admissions and increasing the number of patients dying at home. However, broad clinical and statistical heterogeneity of included studies results in uncertainty about the effect size.
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Background: The number of people with multiple chronic conditions receiving primary care services is growing. To deal with their increasingly complex health care demands, professionals from different disciplines need to collaborate. Interprofessional team (IPT) meetings are becoming more popular. Several studies describe important factors related to conducting IPT meetings, mostly from a professional perspective. However, in the light of patient-centeredness, it is valuable to also explore the patients’ perspective. Objective: The aim was to explore the patients’ perspectives regarding IPT meetings in primary care. Methods: A qualitative study with a focus group design was conducted in the Netherlands. Two focus group meetings took place, for which the same patients were invited. The participants, chronically ill patients with experience on interprofessional collaboration, were recruited through the regional patient association. Participants discussed viewpoints, expectations, and concerns regarding IPT meetings in two rounds, using a focus group protocol and selected video-taped vignettes of team meetings. The first meeting focused on conceptualization and identification of themes related to IPT meetings that are important to patients. The second meeting aimed to gain more in-depth knowledge and understanding of the priorities. Discussions were audio-taped and transcribed verbatim, and analyzed by means of content analysis. Results: The focus group meetings included seven patients. Findings were divided into six key categories, capturing the factors that patients found important regarding IPT meetings: (1) putting the patient at the center, (2) opportunities for patients to participate, (3) appropriate team composition, (4) structured approach, (5) respectful communication, and (6) informing the patient about meeting outcomes. Conclusions: Patients identified different elements regarding IPT meetings that are important from their perspective. They emphasized the right of patients or their representatives to take part in IPT meetings. Results of this study can be used to develop tools and programs to improve interprofessional collaboration.
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