Hoofdstuk 3.1: Advance care planning (ACP) is een dynamisch proces van reflectie en dialoog tussen de patiënt, naasten en/of zorgverleners, bedoeld om behandelkeuzes vast te leggen met betrekking tot de toekomstige (palliatieve en levenseinde)zorg en kwaliteit van leven, op basis van de waarden, wensen en voorkeuren van de patiënt en de naasten. ■ Voordelen van ACP zijn: een betere kwaliteit van zorg, meer tevredenheid over de zorg, minder stress of angst bij de betrokkenen, minder belastende en onnodige behandelingen, een betere inschatting van de wenselijkheid van interventies, en versterking van de relatie met naasten. ■ In België zit relevante wetgeving rond ACP vervat in drie wetten, rond patiëntenrechten, palliatieve zorg en euthanasie. In Nederland gaat het om de Wet op de geneeskundige behandelingsovereenkomst (WGBO), de euthanasiewet en het Kwaliteitskader palliatieve zorg. ■ Bij ACP is het gebruikelijk dat afspraken die gemaakt worden – bijvoorbeeld rond bepaalde levenseindebeslissingen – in een schriftelijke wilsverklaring en een individueel behandelplan worden vastgelegd. Daarnaast kan de patiënt een vertrouwenspersoon of wettelijk vertegenwoordiger aanstellen, die kan spreken voor de patiënt indien deze wilsonbekwaam wordt. ■ De Toolkit ‘Proactieve palliatieve zorg in de GGZ’ biedt hulpverleners in de ggz handvatten en structuur bij tijdige en goede palliatieve begeleiding. De Toolkit behandelt vijf stappen. ► Tijdige herkenning van een palliatieve zorgbehoefte. ► In kaart brengen van symptomen, problemen en behoeften. ► Proactieve zorgplanning en uitvoering. ► Zorg in de stervensfase. ► Nazorg voor naasten. ■ Het is zaak tijdig ACP-gesprekken te voeren, dus ruim voordat de patiënt is uitbehandeld of bij de laatste behandeloptie is gekomen. Het is belangrijk een ACP-gesprek aan te kondigen, zodat de patiënt zich met de naasten hierop kan voorbereiden. Gesprekken worden bij voorkeur in een voor de patiënt vertrouwde omgeving gevoerd.
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BackgroundHospital admissions are common in the last phase of life. However, palliative care and advance care planning (ACP) are provided late or not at all during hospital admission.AimTo provide insight into the perceptions of in-hospital healthcare professionals concerning current and ideal practice and roles of in-hospital palliative care and advance care planning.MethodsAn electronic cross-sectional survey was send 398 in-hospital healthcare professionals in five hospitals in the Netherlands. The survey contained 48 items on perceptions of palliative care and ACP.ResultsWe included non-specialists who completed the questions of interest, resulting in analysis of 96 questionnaires. Most respondents were nurses (74%). We found that current practice for initiating palliative care and ACP was different to what is considered ideal practice. Ideally, ACP should be initiated for almost every patient for whom no treatment options are available (96.2%), and in case of progression and severe symptoms (94.2%). The largest differences between current and ideal practice were found for patients with functional decline (Current 15.2% versus Ideal 78.5%), and patients with an estimated life expectancy <1 year (Current 32.6% versus ideal 86.1%). Respondents noted that providing palliative care requires collaboration, however, especially nurses noted barriers like a lack of inter-professional consensus.ConclusionsThe differences between current and ideal practice demonstrate that healthcare professionals are willing to improve palliative care. To do this, nurses need to increase their voice, a shared vision of palliative care and recognition of the added value of working together is needed.
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BackgroundSpecialist palliative care teams are consulted during hospital admission for advice on complex palliative care. These consultations need to be timely to prevent symptom burden and maintain quality of life. Insight into specialist palliative care teams may help improve the outcomes of palliative care.MethodsIn this retrospective observational study, we analyzed qualitative and quantitative data of palliative care consultations in a six-month period (2017 or 2018) in four general hospitals in the northwestern part of the Netherlands. Data were obtained from electronic medical records.ResultsWe extracted data from 336 consultations. The most common diagnoses were cancer (54.8%) and organ failure (26.8%). The estimated life expectancy was less than three months for 52.3% of all patients. Within two weeks after consultation, 53.2% of the patients died, and the median time until death was 11 days (range 191) after consultation. Most patients died in hospital (49.4%) but only 7.5% preferred to die in hospital. Consultations were mostly requested for advance care planning (31.6%). End-of-life preferences focused on last wishes and maintaining quality of life.ConclusionThis study provides detailed insight into consultations of palliative care teams and shows that even though most palliative care consultations were requested for advance care planning, consultations focus on end-of-life care and are more crisis-oriented than prevention-oriented. Death often occurs too quickly after consultation for end-of-life preferences to be met and these preferences tend to focus on dying. Educating healthcare professionals on when to initiate advance care planning would promote a more prevention-oriented approach. Defining factors that indicate the need for timely palliative care team consultation and advance care planning could help timely identification and consultation.
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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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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: after hospitalisation for cardiac disease, older patients are at high risk of readmission and death. Objective: the cardiac care bridge (CCB) transitional care programme evaluated the impact of combining case management, disease management and home-based cardiac rehabilitation (CR) on hospital readmission and mortality. Design: single-blind, randomised clinical trial. Setting: the trial was conducted in six hospitals in the Netherlands between June 2017 and March 2020. Community-based nurses and physical therapists continued care post-discharge. Subjects: cardiac patients ≥ 70 years were eligible if they were at high risk of functional loss or if they had had an unplanned hospital admission in the previous 6 months. Methods: the intervention group received a comprehensive geriatric assessment-based integrated care plan, a face-to-face handover with the community nurse before discharge and follow-up home visits. The community nurse collaborated with a pharmacist and participants received home-based CR from a physical therapist. The primary composite outcome was first all-cause unplanned readmission or mortality at 6 months. Results: in total, 306 participants were included. Mean age was 82.4 (standard deviation 6.3), 58% had heart failure and 92% were acutely hospitalised. 67% of the intervention key-elements were delivered. The composite outcome incidence was 54.2% (83/153) in the intervention group and 47.7% (73/153) in the control group (risk differences 6.5% [95% confidence intervals, CI -4.7 to 18%], risk ratios 1.14 [95% CI 0.91-1.42], P = 0.253). The study was discontinued prematurely due to implementation activities in usual care. Conclusion: in high-risk older cardiac patients, the CCB programme did not reduce hospital readmission or mortality within 6 months.
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Inleiding: Het totale pijn concept en het management van pijn heeft een interdisciplinaire invalshoek nodig. Naast medicamenteuze behandeling hebben patiënten de wens om meer symptoom management interventies die complementair zijn. Verpleegkundigen zijn een stabiele dagelijkse factor bij pijnmanagement en vaak de eerste professional in het signaleren van pijn. Het inzetten van nonfarmacologische verpleegkundige interventies zou kunnen bijdragen aan het verlichten van pijn.Onderzoeksvraag: Welke non-farmacologische verpleegkundige interventies zijn er voor het verlichten van pijn bij de palliatieve patiënten?Methoden: Een opgestelde zoekstrategie werd gebruikt en aangepast naar de databases: PubMed, CINAHL, PsycINFO en Embase. De zoekresultaten werden dubbelblind gescreend en de methodologische kwaliteit dubbelblind beoordeeld met de Joanna Briggs Institute Critical Appraisal Tools. Data-extractie vond plaats en de resultaten samengevat. Er werd een best-evidence synthese gebruikt waarin de methodologische kwaliteit, aantal studies met dezelfde interventies en consistentie in resultaten werden vertaald naar sterk, gematigd, gemixt of onvoldoende evidentie.Resultaten: Er werden 2385 artikelen gevonden. 22 studies zijn geselecteerd waarin verschillende nonfarmacologische verpleegkundige interventies werden gebruikt. Een aantal interventies zijn in meerder studies onderzocht: massage en virtual reality hadden de meeste evidentie voor het ondersteunen bij pijn verlichting en kunst therapie had onvoldoende bewijs. Mindful breathing gafgeen significante pijnverlichting. Alle andere interventies zijn onvoldoende onderzocht. Hypnose, progressieve relaxatie met interactieve geleide visualisaties, cognitive behavioural audiotapes, voetenbad, reflexology en muziek therapie gaven veelbelovende resultaten voor pijnverlichting en mindfulness-based stress reductie programma, aromatherapie en aromatherapie massage gaven deze resultaten niet.Conclusies: Ondanks dat niet alle studies significante veranderingen in pijnscores lieten zien kunnen non-farmacologische verpleegkundige interventies nog wel klinisch relevant zijn voor de palliatieve patiënt. De interventies kennen geen risico’s, hebben allemaal een korte-termijn effect op pijn, zijn in alle settingen van zorg in te zetten, kunnen waar gewenst ook aangeleerd worden door de patiënt of mantelzorg en door de verpleegkundige 24/7 in te zetten. Vanwege de waarde die de interventies voor de patiënt kunnen hebben zou de inzet ervan overwogen moeten worden voor het pijn management plan. Onderzoek met sterke methodologische kwaliteit naar non-farmacologische verpleegkundige interventies blijft nodig.Aanbevelingen: De interventies massage, virtual reality en kunst therapie zouden vanwege de beste evidentie een eerste optie kunnen zijn die verpleegkundigen aanbieden aan patiënten. Vanwege de klinische relevantie is het van belang naar de wens van de patiënt, het ziektebeeld en progressie van de ziekte te kijken welke non-farmacologische verpleegkundige interventies het best passend is.
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Het ZonMw-programma ‘Ontwikkeling Kwaliteitsstandaarden 2019-2022: Wijkverpleging’ draagt bij aan het ontwikkelen, implementeren en evalueren van kwaliteitsstandaarden voor verpleegkundigen en verzorgenden. Het is belangrijk om te weten voor welke onderwerpen en patiëntproblemen mogelijk een knelpuntanalyse of een kwaliteitsstandaard nodig is, of waar een kwaliteitsstandaard geactualiseerd dient te worden. Om dit helder te krijgen wordt in 2020-2021 de ‘Programmeringsstudie Ontwikkeling Kwaliteitsstandaarden 2019-2022: Wijkverpleging’ uitgevoerd
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In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
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In the decision-making environment of evidence-based practice, the following three sources of information must be integrated: research evidence of the intervention, clinical expertise, and the patient’s values. In reality, evidence-based practice usually focuses on research evidence (which may be translated into clinical practice guidelines) and clinical expertise without considering the individual patient’s values. The shared decision-making model seems to be helpful in the integration of the individual patient’s values in evidence-based practice. We aim to discuss the relevance of shared decision making in chronic care and to suggest how it can be integrated with evidence-based practice in nursing. We start by describing the following three possible approaches to guide the decision-making process: the paternalistic approach, the informed approach, and the shared decision-making approach. Implementation of shared decision making has gained considerable interest in cases lacking a strong best-treatment recommendation, and when the available treatment options are equivalent to some extent. We discuss that in chronic care it is important to always invite the patient to participate in the decision-making process. We delineate the following six attributes of health care interventions in chronic care that influence the degree of shared decision making: the level of research evidence, the number of available intervention options, the burden of side effects, the impact on lifestyle, the patient group values, and the impact on resources. Furthermore, the patient’s willingness to participate in shared decision making, the clinical expertise of the nurse, and the context in which the decision making takes place affect the shared decision-making process. A knowledgeable and skilled nurse with a positive attitude towards shared decision making – integrated with evidence-based practice – can facilitate the shared decision-making process. We conclude that nurses as well as other health care professionals in chronic care should integrate shared decision making with evidence- based practice to deliver patient-centred care.
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