BACKGROUND: Consistent evidence suggests that children's palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children's palliative care MCN, with an aim to identify barriers and enablers of successful implementation.
METHODS: Thematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children's palliative care (September 2019-March 2020).
RESULTS: The study explored health professionals' perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN's development was impeded by cross-cutting barriers including limited funding for the MCN and children's palliative care more generally, no shared technology, lack of standards and evidence base for children's palliative care, and shortage of palliative care staff. These barriers impacted on the MCN's ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified.
CONCLUSIONS: Key features of children's palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network's success.
Titre titanesque qui m'est proposé pour cette conférence introductive de la 1re journée régionale de la coordination des soins palliatifs des Hauts-de-France marchant résolument vers "son futur". Qui a la légitimité de dire tout ce qu'a été hier et qui serait assez assuré pour prédire ce que sera demain ? Ayant terminé voici peu la lecture du livre collectif de Marie-Hélène Salamagne et Patrick Thominet relatif à leur bilan de 30 ans des soins palliatifs en France, je me demandais ce que je pourrais dire d'autre que ce qui a été développé dans ce très bel ouvrage. Et pourtant, le regard attentif y découvrira qu'aucun chapitre n'y est consacré à la dimension spirituelle alors que, au nom de la douleur-souffrance totale et de sa prise en charge, on revendique cette dimension comme un fondement constitutif de la prise en charge palliative. Dès lors, quelque chose serait encore peut-être à dire d'hier pour demain...
Mon point de vue sera certes particulier. Ayant quitté voici un an le centre d'éthique médicale de Lille pour me recentrer sur d'autres champs de recherches - le réseau RESSPIR, réseau soins, santé, spiritualités -, recherches par ailleurs complémentaires à tout ce que j'ai pu réaliser ces dernières années, ce ne sera donc que dans le seul champ des sciences humaines que je prendrai la parole pour relire et discerner, autant que faire se peut, pour demain.
BACKGROUND: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved.
AIM: To explore healthcare professionals' experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members.
DESIGN: Qualitative design, including focus group discussions.
SETTING/PARTICIPANTS: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital's palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals (n = 53) from different care settings.
RESULTS: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement.A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals.
CONCLUSION: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks.
In order to plan the right palliative care for patients and their families, it is essential to have detailed information about patients' needs. To gain insight into these needs, we analyzed five Italian local palliative care networks and assessed the clinical care conditions of patients facing the complexities of advanced and chronic disease. A longitudinal, observational, noninterventional study was carried out in five Italian regions from May 2017 to November 2018. Patients who accessed the palliative care networks were monitored for 12 months. Sociodemographic, clinical, and symptom information was collected with several tools, including the Necesidades Paliativas CCOMS-ICO (NECPAL) tool, the Edmonton Symptom Assessment System (ESAS), and interRAI Palliative Care (interRAI-PC). There were 1013 patients in the study. The majority (51.7%) were recruited at home palliative care units. Cancer was the most frequent diagnosis (85.4%), and most patients had at least one comorbidity (58.8%). Cancer patients reported emotional stress with severe symptoms (38.7% vs. 24.3% in noncancer patients; p = 0.001) and were less likely to have clinical frailty (13.3% vs. 43.9%; p < 0.001). Our study confirms that many patients face the last few months of life with comorbidities or extreme frailty. This study contributes to increasing the general knowledge on palliative care needs in a high-income country.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
De nombreuses zones rurales éloignées des hôpitaux voient le nombre de leurs médecins généralistes diminuer, ce qui complique l’accès aux soins pour les patients de ces territoires. Des solutions pertinentes existent cependant, comme l’illustre l’expérience du réseau Dousopal, en Normandie, qui contribue, en équipe avec les soignants du domicile, à organiser un accompagnement en soins palliatifs dans des conditions optimales pour tous.
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In December 2003, in the northeast region of Italy, the regional authority promoted and developed a regional network for PPC, a regional network dedicated to the management of pediatric patients with life-limiting and life-threatening diseases. Characterization of LTV children population and description of care offered to them by a regional PPC network, based on the experience of the Veneto region were collected in a regional database. The regional database and evaluation of families' satisfaction, by means of a questionnaire, were longitudinally analyzed. We studied 56 children on LTV. The main involved diseases were neuromuscular diseases and myopathy. All patients had major comorbidities. Mean age was 4.5 years. The median age of starting ventilation was 3.9 years. The initial type of ventilation was invasive mechanical ventilation in 31 patients and noninvasive ventilation in 25 of them. The overall average frequency of hospitalizations for acute episodes was 0.7 admissions per year and the median duration of staying was 6 days. The median duration of staying in the intensive care unit (ICU) was significantly reduced after the opening of a residential solution (the pediatric hospice) (5 vs. 39 days). PPC network can offer global care to children on LTV. The availability of a residential structure into the PPC network seems to reduce the number and duration of hospital stays, especially in ICU, of this population, with likely cost savings. Further studies are necessary to confirm this hypothesis.
INTRODUCTION: All healthcare providers can influence the delivery and outcome of a palliative approach to care, ensuring that everyone has 'equitable access to quality care based on assessed need as they approach and reach the end-of-life'. This study mapped the delivery of palliative care in far west New South Wales (NSW), Australia, with objectives to: identify who was involved in providing such care in the Far West Local Health District (FWLHD), how they connect, and any gaps in the network describe what care was provided and identify any challenges to care provision. The mapping process and outcomes can be used to guide the implementation of new models of care by building on the localised knowledge of current networks, provision of care and challenges.
METHODS: Semi-structured interviews were undertaken with members of the specialist palliative care service and generalist healthcare providers within the FWLHD. Fifteen interviews were conducted over 7 months. Content analyses of interview transcripts identified processes and challenges as well as improvements for care. A network analysis was conducted to identify unidirectional connections and 'map' the services.
RESULTS: The vast network demonstrates extensive long-term involvement in palliative care as well as established connections and opportunities for improving communication between the services and providers involved in palliative care. Palliative practice is varied and challenging within the network; challenges include communication, early identification and education. Mapping the existing networks, resources and relationships proved invaluable to guide the implementation of a palliative approach to care.
CONCLUSION: The implementation of a palliative approach, as with any service model, requires agreement and engagement across relevant healthcare organisations, services and providers. Mapping and understanding the network of providers (and organisations) that support healthcare delivery before implementing new models of care will identify strengths and gaps within the network. This knowledge will then support new and integrated connections that enhance the provision of care so that it is acceptable, fit for purpose and regionally responsive.
Les auteurs se sont entretenus avec Régis Aubry, chef de service de soins palliatifs à l'hôpital de Besançon et membre du Comité consultatif national d'éthique (CCNE) depuis 2012. Ensemble, ils évoquent les évolutions médicales, organisationnelles et politiques en lien avec la fin de vie.
BACKGROUND: Internationally, efforts are underway to develop coordinated and standardized approaches for palliative care service delivery by improving service quality in hospice and palliative care networks. German legal regulations explicitly demand networking between hospice and palliative care providers. However, there is little research on models of cooperation and the building and development of hospice and palliative care networks. Research-based recommendations for network building and advancement are lacking.
OBJECTIVE: The study aim was to develop empirical recommendations for the building of new and advancement of existing hospice and palliative care networks in Bavaria, Germany.
METHODS: The project utilized a qualitative approach. The research project was structured in six sequential phases: 1) semi-structured individual interviews on status quo of networks, 2) a workshop including a focus group to develop definitions of key terms and prioritize major network themes, 3) semi-structured face-to-face interviews on factors enabling and inhibiting cooperation, 4) drafting of a recommendation for regional hospice and palliative care networks, 5) an online consensus survey questionnaire to rate relevance and feasibility of the draft recommendation and an internal consensus meeting to revise the draft, and 6) an expert workshop to develop examples of realization. Coordinators and chairpersons of 12 hospice and palliative care networks constitute the study population for study phases 1 to 3, 5, and 6. Network representatives partook in one (n=6), two (n=6), three (n=4), four (n=2), or all five (n=1) of the study phases 1, 2, 3, 5, and 6. Further experts participated in one (n=10) or both (n=1) of the phases 5 and 6.
RESULTS: Recommendations were drafted for six thematic fields: (i) missions and aims, (ii) roles and responsibilities, (iii) coordination, (iv) communication and information channels, (v) public visibility, and (vi) funding. The whole set of recommendations was rated by 90% of the participants to be fully or somewhat important for network building and development. A total of 22 recommendations was approved.
CONCLUSIONS: The call for establishing and developing standards for hospice and palliative care networks was situated within the current policy climate of Germany and the broader international community. The present recommendations can aid implementation of this request and have a strong relevance for practice.
Chaque année, entre 2 500 et 4 000 enfants décèdent en France, dont 15 % environ d’une pathologie cancéreuse. En Île-de-France, dans le cadre de ces pathologies, c’est pour plus de 100 enfants environ par an que se pose l’angoissante question d’un accompagnement de fin de vie. Environ 30 seront pris en charge par une structure d’HAD. Souvent l’enfant souhaite « rentrer à la maison » mais comment assurer alors le meilleur des soutiens, tant de lui-même que de ses proches ? Actuellement, la demande d’un retour à la maison est de plus en plus fréquente.
[Début de l'article]
BACKGROUND: In 2017, the Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) published nine domains of high-quality care for pediatric home-based hospice and palliative care (HBHPC). Eight domains established by the National Consensus Project (NCP) were validated for pediatric HBHPC, and a ninth domain of "Continuity and Coordination of Care" was added.
OBJECTIVE: The aim of this study was to establish definition criteria for each of these domains.
DESIGN AND SETTING: Using a modified Delphi technique, providers from the OPPEN were surveyed regarding definitions drawn from the NCP domain criteria. For the ninth domain, new definition criteria were generated de novo based on qualitative responses.
RESULTS: Definition criteria were established for the nine domains of quality in HBHPC previously identified. In the course of analysis, Bereavement Care was established as a 10th domain of quality, and definition criteria generated.
CONCLUSIONS: This is the first study to define domains of quality for pediatric HBHPC, and the second to leverage the infrastructure of a pediatric HPC statewide consortium toward this work. Future studies are needed to establish parent and patient-prioritized domains of quality in pediatric HBHPC, and to map indicators validated in pediatrics to these domains.
BACKGROUND: Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives.
AIM: (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction.
DESIGN: Cross-sectional explorative design.
SETTING/PARTICIPANTS: We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands.
RESULTS: About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians (p < 0.001). Compared to patients with cancer, patients with chronic obstructive pulmonary disease (odds ratio = 0.16, confidence interval (0.04; 0.57)) and chronic heart failure (odds ratio = 0.11, confidence interval (0.01; 0.93)) had significantly lower odds of reporting contact with palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient’s care networks varied across countries. Perceived integration was significantly associated with overall satisfaction.
CONCLUSION: Palliative care professionals are not always present or recognised as such in patients' care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.
A partir de deux vignettes cliniques, l'auteure aborde les problématiques rencontrées lors de tentatives de recueil de ce type d’écrit auprès de personnes âgées résidant en EHPAD. Puis, elle analyse cette question à partir du contenu des textes officiels et des données de la littérature actuelle. La question du recueil des directives anticipées sera également analysée à partir des données recueillies dans un contexte différent de celui des EHPAD, grâce au stage réalisé dans un Réseau de Soins Palliatifs intervenant à domicile.
[Extrait de l'introduction]
La prise en charge à domicile des personnes en fin de vie représente un enjeu de santé publique et un enjeu d’évolution de la relation médecin patient. En effet, si actuellement 70% des français décèdent en institutions de soins, plus de 60% disent, qu’à qualité de soins égale,
ils préfèreraient mourir à domicile. Parler de prise en charge à domicile c’est forcément étudier d’une part le rôle clé du médecin généraliste, première interface dans ce type de prise en charge du patient et de son entourage, et d’autre part, l’évolution des structures de soins. Nous avons choisi pour illustrer notre propos d’étudier la place du médecin généraliste dans
un réseau de soins palliatifs à domicile situé dans le sud de l’Essonne, le réseau SPES (Soins Palliatifs Essonne Sud). L’objectif de l’étude est de recenser les difficultés rencontrées par les médecins avant la mise en route du réseau, puis de voir dans quelle mesure le réseau peut apporter des réponses à ces difficultés, et notamment quels sont les avantages propres à ce type d’organisation. Ces résultats ont par ailleurs été confrontés aux études déjà menées en France sur le sujet, ainsi qu’aux expériences menées sur le plan international. Il ressort de ce travail que le développement de structures de prise en charge en soins palliatifs à domicile répond à un besoin ressenti par les professionnels mais aussi à une demande de la population, d’une part de finir leur vie à domicile, d’autre part d’accéder à des soins palliatifs et à des traitements antidouleur. Il ressort également un besoin fort de formation, de prise en compte des questions éthiques et un besoin d’évolution des structures et des processus de décisions. A travers ces évolutions, si leurs missions sont renforcées à l’avenir, les réseaux de santé apporteront une réponse aux demandes des professionnels de santé et de la société en matière de prise en charge des patients en fin de vie, en garantissant la continuité, la coordination, et la qualité des soins délivrés à domicile.
[Résumé auteure]