CONTEXT: Inadequate handovers between hospital and home can lead to adverse health outcomes. A group particularly at risk are patients at the end of life because of complex health problems, frequent care transitions and involvement of many professionals.
OBJECTIVES: To investigate healthcare providers' views and experiences with regard to the transition from hospital to primary care in palliative care.
METHODS: This was a descriptive qualitative study. Three focus group discussions were held with 28 nurses and two focus groups with nine physicians. Participants were recruited from primary and hospital care. The focus groups were audio-recorded, transcribed verbatim and analysed thematically.
RESULTS: The following themes emerged from the data: (1) lack of identification of and communication about the last phase of life; (2) incomplete and insufficient handover; and (3) uncertainty about responsibilities. Professionals emphasize the importance of proper handovers and transitional processes in these vulnerable patients. The transition between hospital to primary care is hindered by a lack of identification of the palliative phase and uncertainties about patient awareness. Direct communication between professionals is needed but lacking. The handover itself is currently primarily focussed on physical aspects where psychosocial aspects were also found necessary. Furthermore, uncertainties with regard to physicians' responsibility for the patient seem to further hinder professionals in the transitional process.
CONCLUSION: Efforts should be made to enhance knowledge and skills around identification of palliative needs and communication with patients about the end of life, especially in the hospital setting.
L'objectif du réseau est de promouvoir au sein de nos sociétés la compréhension, la reconnaissance et l'intégration de la spiritualité dans les milieux de la santé. Il se décline en trois axes : optimiser la qualité des prestations des professionnels de santé ; améliorer la qualité de l'accompagnement par les professionnels mandatés ; sensibiliser les organismes communautaires aux bénéfices d'une intégration de la spiritualité et les aider à construire des politiques adaptées.
The mark of a true profession is the ability to self-regulate. As such, advanced practice registered nurses (APRNs) are challenged by their professional organisations to participate in self-evaluation and peer review. Peer review is a method for evaluating the care provided by the APRN to both ensure quality nursing care and promote professional growth. Despite guidelines to participate in a formal peer-review process, there is little information within the nursing profession on how to accomplish peer review. A comprehensive literature review failed to provide a framework for peer review that is practice focused, fosters a learning environment and encompasses the thought process and clinical decision-making of the palliative care advanced practice nurse. A group of palliative care APRNs set out to create a process that encompassed the breadth of clinical decision-making in palliative care advanced nursing practice. Using the eight domains of palliative care, a narrative case review structure was created. The resulting process both assisted the APRNs in professional growth and provided timely feedback for the annual performance evaluation.
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.
BACKGROUND: While most patients desire to die at home or in a community-based hospice, the transition from hospital to community settings often lacks streamlined coordination of care to ensure that adequate support is provided in the preferred care setting. The impact of hospital-based palliative care consultations on post-discharge care and outcomes has not been extensively studied.
AIM: The aim of this study was to appraise available research on the impact of inpatient palliative care consultations on transitions from hospital to community settings.
DESIGN: We conducted a narrative systematic review and used the Effective Public Health Practice Project tool to appraise the quality of selected studies. Studies were included if they assessed the transition from hospital to community and examined outcomes after an inpatient palliative care consultation. A protocol for this study was registered and published in PROSPERO, Centre for Reviews and Dissemination (ID: CRD42018094924).
DATA SOURCES: We searched for quantitative studies indexed in PubMED, CINAHL and Cochrane and published between 1 January 1 2000 and 11 March 2018.
RESULTS: Our search retrieved 2749 articles. From these, 123 articles were full-text screened and 15 studies met our inclusion criteria. Studies reported that inpatient palliative care consultations are associated with high rates of discharge to community settings, greater provision of services post-discharge, improved coordination and lower rates of rehospitalization.
CONCLUSION: Existing evidence suggest that inpatient palliative care consultations have a positive impact on patient outcomes and transitions to the community, demonstrating the potential to improve patient quality of life and relieve overburdened acute care systems.
BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care.
AIM: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual.
DESIGN: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves.
SETTING/PARTICIPANTS: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study.
RESULTS: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time.
CONCLUSION: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers' support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.
Cet article fait le bilan de plusieurs années de collaboration entre un établissement médicoéducatif et une équipe ressource régionale de soins palliatifs. Il décrit les évidences à la rencontre de ces deux équipes, l’une issue du « monde » médicosocial, l’autre du « monde » sanitaire. Par nature, le polyhandicap, et l’extrême fragilité médicale qui en découle, nécessitent que le projet personnalisé des enfants accueillis dans ce type d’établissement prenne en compte leurs besoins de santé. Aussi, la collaboration avec l’équipe ressource régionale de soins palliatifs est devenue un outil de travail intéressant pour l’établissement, avec des répercussions en termes de culture d’établissement, d’accompagnement familial et d’accueil des enfants. Au-delà de ces évidences, le lien « ville – hôpital » devient une réalité au bénéfice des enfants accueillis.
Background: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients.
Methods/design: We used data from participants of the Longitudinal Aging Study Amsterdam (2001–2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees.
Results: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care.
Conclusion: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.
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.
Background: The University of Iowa Hospitals and Clinics (UIHC) has a palliative care (PC) volunteering program that has recruited college students since 2010. There is little research on the effects of PC volunteering on collegiate volunteers.
Objective: The objective is to determine the impact of PC volunteering on college students' professional lives and on their interest in PC.
Design/Setting/Measurements: The UIHC Volunteer Services office sent a 25-question survey with closed- and open-ended items to previous and current PC college volunteers. We used descriptive statistics to characterize the sample. Free text responses were analyzed using a descriptive qualitative approach with three independent coders.
Results: Seventy-one percent of respondents (23/33) reported they were more likely to pursue PC after volunteering. PC volunteering helped change views of patient care and abilities to discuss end-of-life situations. Ninety-one percent served as informal ambassadors by discussing PC with family and peers. Major themes identified include motivation to volunteer for patient contact and interest in learning about PC. Respondents described meaningful patient interactions, lessons in empathy, and the power of listening.
Conclusions: These results suggest that PC volunteering affects career choices and helps volunteers gain needed listening skills for patient care in the future. The unique exposure and interactions with PC patients and their families have changed volunteers' understanding of health care. PC volunteers speak in their social networks about PC. This experience may increase the likelihood of student volunteers to pursue careers in PC.
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 importantes évolutions démographiques et sociétales demandent que les soins palliatifs se développent au domicile des personnes malades. Les équipes mobiles, mal réparties sur le territoire, soutiennent la nécessité pour l'hôpital de se tourner vers la ville (HAD) et de participer à la coordination des soins. Celle-ci mobilise de nombreuses ressources et le médecin traitant y tient une place centrale. (R.A.).
Origine : BDSP. Notice produite par APHPDOC A9rkHR0x. Diffusion soumise à autorisation
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.
BACKGROUND:: Effective palliative care requires a strong evidence base to advance clinical practice and policy-making. Calls for more collaborative and strategic approaches to research have resulted in the development of research networks at national and wider regional levels.
AIM:: The aim was to synthesize the learning arising from the activities of the Palliative Care Research Network from the island of Ireland, in order to identify the overarching messages from these activities. The ultimate aim is to promote the communication of these messages to practice.
DESIGN:: The study developed a systematic search process influenced by Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines, with analysis of data adopting a qualitative critical interpretative synthesis approach using thematic synthesis.
PARTICIPANTS:: In total, 142 dissemination products were sourced from 22 associated projects, including peer-reviewed publications, conference presentations, reports, and web/social media posts.
RESULTS:: The synthesis of dissemination products identified 4 key themes relating to palliative care research and practice: (1) addressing the needs of patients while recognizing the caregiver role, (2) equal access to connected services, (3) general and specific needs in palliative care research, and (4) challenges in palliative care research.
CONCLUSIONS:: The key themes identified relate to challenges in both practice and research, highlighting the complexity of palliative care provision that aims to support both patients and carers, and research in this area. However, an important implication is the need for a broader approach to dissemination (beyond traditional academic activities) to ensure that research in palliative care is well placed to inform both practice and policy.
BACKGROUND: Supportive care in cancer (SCC) have been recommended to be integrated in the management of patients with lung cancer all along the course of the disease. We took advantage of a pilot program of early implementation of optimized SCC, to report the feasibility such program in patients with advanced lung cancer, and correlate patient characteristics and outcomes with the actual use of optimized SCC.
METHODS: This study is a retrospective analysis of all consecutive patients with lung cancer treated at our center between 2012 and 2016. Optimized SCC included the intervention of a nurse for the home-hospital network coordination, as well as socio-aesthetics, psychomotricity, art-therapy, adapted physical activity, and also establishment of at-home hospitalization.
RESULTS: 309 patients were included. Median overall survival was 11.2 months. Unplanned hospitalizations occurred for 276 (89%) patients. The median duration of hospital stay was 19 days. Unplanned hospitalizations more frequently occurred within the first 3 months after the diagnosis of advanced cancer, and in the last 3 months before death. A short – less than 3 months – delay between diagnosis and unplanned hospitalization was associated with poor outcome. 272 (88%) patients received optimized SCC, within a median delay of 8 weeks after diagnosis. Intervention of the nurse for in- and out-patient network coordination was done for 143 (46%) patients, and at-home hospitalization was organized for 78 (25%) patients. The outcome of patients who received optimized SCC was numerically, but not significantly better (median overall survival of 11.8 vs. 6.9 months, p = 0.270).
CONCLUSION: Our study provides landmark data to support an early integration of optimized SCC for patients with advanced lung cancer, that includes multimodal supportive care interventions along the course of the disease. This highlights the role of multidisciplinary teams to optimize the management of patients with advanced lung cancer.
Todos Contigo (We are All With You) is a programme for social awareness, training, and implementation of care networks for citizens to support, accompany and care for those who face advanced chronic disease and end of life situations. From New Health Foundation this programme collaborates with the Public Health and Palliative Care International Charter of Compassionate Communities. It seeks to promote a new integrated palliative care model in the daily lives of individuals, to make families and health/social professionals the main promoters of compassionate communities and compassionate cities movement. This workshop aims to: (I) describe the methodology of the programme: required tools and steps for building and developing a compassionate city or community; (II) identify stakeholders and organizations to join the compassionate community as networking agents; (III) sharing experiences from the implementation of this project in various contexts while providing specific examples and lessons learned from the perspective of various roles; (IV) explain the process of becoming a part of the project and of getting the official recognition for being a compassionate city. This workshop aims to share a new methodology "Todos Contigo" (We are all with you) Programme for the development of compassionate communities and cities movement. We describe our experiences in Spain and Latin American countries. The method is based on creating community networks, carrying out social awareness and training programmes related to end of life care.
Introduction: Choisir de mourir chez soi est une décision complexe et mobilise de nombreux acteurs de soins. Dans la continuité du Plan triennal 2015–2018 qui consacre un axe d’intervention au déploiement des soins palliatifs à domicile, l’équipe mobile de soins palliatifs (EMSP) stéphanoise souhaite intensifier le soutien aux soignants et aux aidants en ville. Cet article a pour objectif de mettre en évidence l’intérêt de développer une activité à domicile auprès des patients et des professionnels de santé de ville.
Méthodes: Étude préliminaire, qualitative, observationnelle de 3 EMSP de la région Auvergne-Rhône-Alpes, de leurs actions à domicile et d’un choix de consultations marquantes.
Résultats: Sur l’ensemble des interventions physiques, le domicile représente entre 14 % et 25 % de l’activité des EMSP1&2. L’EMSP3 a réalisé 313 visites en 2016. Ces équipes sollicitées par les hôpitaux et les médecins traitants interviennent pour des problèmes éthiques, de douleur, ou autres symptômes d’inconfort, pour un soutien psychologique du patient, des aidants, ou des soignants libéraux, pour un besoin social ou une évaluation globale et pluridisciplinaire.
Conclusion: L’EMSP joue un rôle interstitiel fondamental cimentant un bricolage d’acteurs multiples, motivés, mais parfois aussi souffrants ou maladroits autour d’un malade en fin de vie à domicile. Véritable soutien pour le médecin généraliste et maillon entre la ville et l’hôpital, elle essaye de respecter l’intimité des familles, les choix des patients et le professionnalisme des soignants. Ces consultations complexes demandent du temps, de la disponibilité, de l’expérience, et exigent une approche transdisciplinaire.
BACKGROUND: In recent years, compassion has motivated the development of programs oriented to create communities and societies involved in the relief of suffering. The development of compassionate communities and cities begins in each one of us, though it relies on organizations, providers and societies as a whole who need tools and methodologies as a part of a set of actions to help compassionate communities and cities to become a reality rooted widely in social values. In order to describe the "All with You®" methodology and its components: a method designed to develop compassionate communities and cities at the end of life that can be extended to organizations, communities, municipalities, cities or countries. In addition, this article tries to describe several experiences from applying the method in different cities and contexts.
METHODS: A search of models for the development of compassionate communities was carried out initially to guide the elements and phases that could help to create a systematized method that will help organizations to create compassionate communities. After analysing the results, alliances were established with some of the main promoters at the time in the development of compassionate communities to validate the designed method. The city of Seville (Spain) was selected to validate the phases of the method and analyse the results based on a series of indicators. Finally, the methodology is being spread throughout cities in various countries, and the experiences are being evaluated with common indicators.
RESULTS: The "All with You®" method (Todos Contigo® in Spanish) has been developed as a systematic approach that enables anyone interested in building compassionate communities or cities to include all of the elements outlined in the Compassionate City Charter. All with You® is a method that includes eight phases that allows organizations to be guided in the development of compassionate communities and cities towards a certification process that is evaluated through a series of structures, process and results indicators. The main actions of this method are based on social awareness, training, and the implementation of networks of care using innovative elements like Community Promoters and the RedCuida protocol to provide support, backing and care for those who face advanced chronic disease and end of life situations. Several cities in Spain and Latin America have already joined the movement of compassionate cities using this method, including four in Spain (Seville, Badajoz, Getxo and Pamplona), four in Colombia (Cali, Medellin, Fusagasugá and Bogotá) and one in Argentina (Buenos Aires).
CONCLUSIONS: The All with You® method has made the development of compassionate communities and cities possible, aligning organizations and cities to promote compassionate acts, and to start creating networks involved in a global community united by a vocation for caring.