Since the beginning of the SARS-CoV-2 (also called COVID-19) outbreak in the Hubei province in China, half a million people have been infected and more than 25,000 died worldwide by the end of March 2020. In Europe, the third most infected country is France (after Italy and Spain) with more than 26,000 cases and about 1500 deaths by the end of the last week of March. One of the first French regions hit by the outbreak was Picardy, located at the northeast of the country. The first case in Picardy was diagnosed on February 26th, 2020 in the Cardiac Thoracic and Respiratory ICU of the Amiens-Picardy University Hospital. The number of patients admitted to the region's ICUs rapidly increased after that first case. To tackle this surge, an organisation was set in order to coordinate and facilitate the admission of critically ill COVID-19 infected patients, and to avoid or at least delay the overrun of ICU capacities in the region. The organisation has been based on a centralised on-call dispatch ICU consultant and efficient bed manager software.
Introduction: Electronic palliative care coordination systems (EPaCCS) aim to support people approaching the end of life (EOL) to receive consistent care, according to their wishes, that is coordinated effectively across multiple care sectors. They are in use across the UK although empirical evidence into their effectiveness is poor. This paper presents a protocol of a mixed-methods study, to understand how, and by whom, EPaCCS are being used and whether EPaCCS are enabling Healthcare Professionals (HCPs) to coordinate patients’ EOL care.
Methods and analysis: This is a mixed-methods study, carried out within a realist paradigm, to evaluate the impact of an EPaCCS on EOL care as provided by a Clinical Commissioning Group (CCG) in England. This study has two aims: (1) Describe the socio-demographic characteristics of patients who die with an EPaCCS record, their underlying cause of death and place of death and compare these with patients who die without an EPaCCS record. (2) Explore the impact of an EPaCCS on the experience of receiving EOL care for patients and their carers, and understand HCPs’ views and experiences of utilising an EPaCCS to coordinate care for their patients. The study will be conducted in five phases: (1) development of the initial programme theory; (2) focus group with CCG stakeholder board; (3) individual interviews with HCPs, patients, current and bereaved carers; (4) retrospective cohort study of routinely collected data on EPaCCS usage and (5) data analysis and synthesis of study findings.
Ethics and dissemination: The study has been approved by National Health Service South West–Frenchay Research Ethics Committee (REC reference number: 18/SW/0198). Findings will be published in a wide range of outputs targeted at key audiences.
BACKGROUND: Nurses' end of life (EoL) care focuses on direct (eg, physical) and indirect (e,g, coordination) care. Little is known about how much time nurses actually devote to these activities and if activities change due to support by specialized palliative care (SPC) in hospitalized patients.
AIMS: (1) Comparing care time for EoL patients receiving SPC to usual palliative care (UPC);(2) Comparing time spent for direct/indirect care in the SPC group before and after SPC.
METHODS: Retrospective observational study; nursing care time for EoL patients based on tacs® data using nonparametric and parametric tests. The Swiss data method tacs measures (in)direct nursing care time for monitoring and cost analyses.
RESULTS: Analysis of tacs® data (UPC, n = 642; SPC, n = 104) during hospitalization before death in 2015. Overall, SPC patients had higher tacs® than UPC patients by 40 direct (95% confidence interval [CI]: 5.7-75, P = .023) and 14 indirect tacs® (95% CI: 6.0-23, P < .001). No difference for tacs® by day, as SPC patients were treated for a longer time (mean number of days 7.2 vs 16, P < .001).Subanalysis for SPC patients showed increased direct care time on the day of and after SPC (P < .001), whereas indirect care time increased only on the day of SPC.
CONCLUSIONS: This study gives insight into nurses' time for (in)direct care activities with/without SPC before death. The higher (in)direct nursing care time in SPC patients compared to UPC may reflect higher complexity. Consensus-based measurements to monitor nurses' care activities may be helpful for benchmarking or reimbursement analysis.
Good coordination of healthcare services is vital for ensuring health cost efficiency and high-quality care for patients. It is especially important in the context of palliative care as services are often highly fragmented due to a combination of diverse professional groups, organizations, and approaches to care. However, the coordination of services in this field is often evaluated as insufficient. Little is known about the challenges to coordination in this sector in Switzerland. The present study addresses this gap in research by investigating the challenges to coordination at the interface of palliative care services in Switzerland. Interviews (n = 24) with 38 healthcare practitioners working in palliative care in four cantons (Basel-City, Lucerne, Ticino, and Vaud) form the basis for this investigation. The selected cantons not only represent French, Italian, and German language regions of Switzerland but also represent diverse rural, urban, and historical contexts. Expert interviews are analyzed using structural content analysis. Three clusters of challenges to coordination were identified in the data: (1) organizational challenges to coordination, which relate to explicit forms of coordination; (2) relational challenges to coordination; and (3) structural challenges to coordination, which relate to implicit forms of coordination. The study reveals a need for better financial support for coordination in palliative care and a stronger focus on interprofessional coordination in educating professionals in palliative care. Future research on how to further foster good team coordination practices between primary and specialized palliative services merits further investigation. Since these findings are indicative of areas for improvement for coordination at the interface of Swiss palliative care services, they are of particular interest for healthcare practitioners, policymakers, and researchers involved in the evolution of coordinative practice.
L’intervention des équipes mobiles de soins palliatifs, le plus souvent sollicitée par le médecin traitant, est essentielle pour accompagner et soutenir les professionnels et les patients. Anticipation, coopération et coordination sont les clés du succès.
BACKGROUND: Electronic care coordination systems, known as the Key Information Summary (KIS) in Scotland, enable the creation of shared electronic records available across healthcare settings. A KIS provides clinicians with essential information to guide decision making for people likely to need emergency or out-of-hours care.
AIM: To estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems.
DESIGN AND SETTING: This was a mixed-methods study involving 18 diverse general practices in Scotland.
METHOD: Retrospective review of medical records of patients who died in 2017, and semi-structured interviews with healthcare professionals were conducted.
RESULTS: Data on 1304 decedents were collected. Of those with an advanced progressive illness (79%, n = 1034), 69% (n = 712) had a KIS. These were started a median of 45 weeks before death. People with cancer were most likely to have a KIS (80%, n = 288), and those with organ failure least likely (47%, n = 125). Overall, 68% (n = 482) of KIS included resuscitation status and 55% (n = 390) preferred place of care. People with a KIS were more likely to die in the community compared to those without one (61% versus 30%). Most KIS were considered useful/highly useful. Up-to-date free-text information within the KIS was valued highly.
CONCLUSION: In Scotland, most people with an advanced progressive illness have an electronic care coordination record by the time of death. This is an achievement. To improve further, better informal carer information, regular updating, and a focus on generating a KIS for people with organ failure is warranted.
Advanced heart failure therapies such as ventricular assist devices and home inotrope use are becoming more common. Technology advances as well as increased indications for use of such therapies is leading to a higher percentage of patients with end-stage heart failure receiving these therapies at end of life. We present a case of a young man with dilated cardiomyopathy who undergoes advanced cardiac care in the setting of progressively declining cardiac function. Our case outlines the importance of acute care, palliative care, and hospice services being coordinated prior to and during acute-care services to provide goal-concordant and expeditious care. With advancing medical therapies for heart disease, increased coordination and collaboration of services are needed, particularly between hospice and acute-care services.
Ce n’est que depuis 2008 que les soins palliatifs pédiatriques sont clairement évoqués en France. Ils sont définis comme des soins allant de la période anténatale jusqu’à 19 ans, dès que l’enfant est atteint d’une maladie qui limite ou menace sa durée de vie. De nombreuses infirmières peuvent, au cours de leur carrière, y être confrontées en établissement sanitaire ou médico-social. Ils nécessitent une prise en charge pluridisciplinaire et une coordination de tous les professionnels de santé concernés par la prise en charge.
Interest in the potential for public health and palliative care to work together is now widely established. Based on a mapping review of existing literature, we describe for the first time the ways in which public health has entered palliative care policy and practice and how this has been specifically articulated. We then go on to pursue analytical and critical lines of enquiry that are largely absent from the existing literature. We do this in three ways: (i) by considering why the link between public health and palliative care has become so ubiquitous within palliative care policy; (ii) by establishing how this has been constructed; and (iii) by exploring public health as a 'reference discipline' from which its 'secondary deployment' can become embedded inside another disciplinary field. From this, we develop a range of critical perspectives on the relationship between public health and palliative care by scrutinising its claims of utility and effectiveness and questioning the strength of the interdisciplinary interaction between the two disciplines. We see their relationship in a 'cross disciplinary' context which is still largely symbolic and tactical in nature. We conclude by considering the significance of these insights for policy and practice, with two possible scenarios. If the use of public health is essentially figurative and its resources are not unique, the particular and exclusive use of the term becomes insignificant. Progressive and effective policy and practice is possible, independent of any explicit public health label. If however public health is considered to have intrinsic and definable worth, we suggest that this currently asymmetrical association needs to be significantly developed with much higher levels of theoretical, practical and critical engagement between the two disciplines. Such work would result in more reflective and robust policy and practice.
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
Au sommaire de ce dossier : "Représentations des coordinateurs hospitaliers concernant la légitimité des proches à décider d'un don d'organes" - "Le don d'organes : voir au-delà des volontés individuelles ?" - "Limitation et arrêt de thérapeutique (s) active (s) aux urgences" - "Les interruptions médicales de grossesse pour mise en péril grave de la santé de la femme. Analyse de 122 demandes à la clinique Jules-Verne de Nantes de 2005 à 2009 d'un point de vue médical et éthique" - "Face à l'émergence d'une théorie post-humaniste, le rapport au corps et la culture palliative caractérisent-ils l'entrée dans une nouvelle modernité ?" - "Déploiement technologique au XXIe siècle. Enjeux éthiques et implication du soignant et du citoyen".
Origine : BDSP. Notice produite par APHPDOC 8mHFR0xs. Diffusion soumise à autorisation
Nearly 20% of cancer patients develop symptomatic spine metastases. Metastatic spine tumors are most commonly extradural tumors that grow quickly and often cause persistent pain, weakness, paresthesias, urinary/bowel dysfunction, and/or paralysis. Surgical intervention aims to achieve more effective pain management, preserve/restore neurological function, provide local tumor control, and stabilize the spinal column. The desired result of treatment is ultimately to improve a patient's quality of life. Neurosurgeons employ multiple decision frameworks and grading scales to assess the need and effectiveness of a variety of surgical interventions ranging from minimally to maximally invasive. Likewise, palliative care offers an array of treatment options that allows the best, individualized plan to be determined for a given patient. Therefore, crossfunctional collaboration between palliative care, radiation oncology, medical oncology, and neurosurgery is crucial both in the maximization of available treatment options and optimization of quality of life for patients.
Background and Objectives: Care coordination and palliative care supports are associated with reduced anxiety, fewer hospital admissions, and improved quality of life for patients and their families. Early palliative care can result in savings in the end-of-life period, but there is limited evidence that larger-scale models can improve both utilization and the cost of care. Three models that received Health Care Innovation Awards from the Centers for Medicare & Medicaid Services aimed to improve quality of care and reduce cost through the use of innovative care coordination models. This study explores the total cost of care and selected utilization outcomes at the end-of-life for these innovative models, each of which enrolled adults with multiple chronic conditions and featured care coordination with advance care planning as a component of palliative care. These included a comprehensive at-home supportive care model for persons predicted to die within a year and two models offering advance care planning in nursing facilities and during care transitions.
Research Design and Methods: We used regression models to assess model impacts on costs and utilization for high-risk Medicare beneficiaries participating in the comprehensive supportive care model (N = 3,339) and the two care transition models (N = 587 and N = 277) who died during the study period (2013-2016), relative to a set of matched comparison patients.
Results: Comparing participants in each model who died during the study period to matched comparators, two of the three models were associated with significantly lower costs in the last 90 days of life ($2,122 and $4,606 per person), and the third model showed nonsignificant differences. Two of the three models encouraged early hospice entry in the last 30 days of life. For the comprehensive at-home supportive care model, we observed aggregate savings of nearly $19 million over the study period. One care transition model showed aggregate savings of over $500,000 during the same period. Potential drivers of these cost savings include improved patient safety, timeliness of care, and caregiver support.
Discussion and Implications: Two of the three models achieved significant lower Medicare costs than a comparison group and the same two models also sustained their models beyond the Centers for Medicare & Medicaid Services award period. These findings show promise for achieving palliative care goals as part of care coordination innovation.
Medical assistance in dying (maid) is a new medical service in Canada. Access to maid for patients with advanced cancer can be daunting during periods of declining health near the end of life. In this report, we describe a collaborative approach between the centralized coordination service and a regional cancer centre as an effective strategy for enabling interdisciplinary care delivery and enhancing patient-centred care at the end of the patient's cancer journey.
BACKGROUND: Community-based palliative care (CBPC) plays an integral role in addressing the complex care needs of older adults with serious chronic illnesses, but is premised on effective communication and collaboration between primary care providers (PCPs) and the providers of specialty palliative care (SPC). Optimal strategies to achieve the goal of coordinated care are ill-defined.
OBJECTIVE: The objective of this study was to understand the facilitators and barriers to optimal, coordinated interdisciplinary provision of CBPC.
METHODS: This was a qualitative study using a constructivist grounded theory approach. Thirty semistructured interviews were conducted with primary and palliative care interdisciplinary team members in academic and community settings.
RESULTS: Major categories emerging from the data that positively or negatively influence optimal provision of coordinated care included feedback loops and interactions; clarity of roles; knowledge of palliative care, and workforce and structural constraints. Facilitators were frequent in-person, e-mail, or electronic medical record-based communication; defined role boundaries; and education of PCPs to distinguish elements of generalist palliative care (GPC) and more complex elements or situations requiring SPC. Barriers included inadequate communication that prevented a shared understanding of patients' needs and goals of care, limited time in primary care to provide GPC, and limited workforce in SPC.
CONCLUSIONS: Our findings suggest that processes are needed that promote communication, including structured communication strategies between PCPs and SPC providers, clarification of role boundaries, enrichment of nonspecialty providers' competence in GPC, and enhanced access to CBPC.
BACKGROUND: Primary health care teams are key to the delivery of care for patients with advanced cancer during the last year of life. The Gold Standards Framework is proposed as a mechanism for coordinating and guiding identification, assessment, and support. There are still considerable variations in practice despite its introduction. The aim of this qualitative study is to improve understanding of variations in practice through exploring the perspectives and experiences of members of primary health care teams involved in the care of patients with advanced cancer.
METHODS: Qualitative, semi-structured interviews, focus groups, and non-participatory observations involving 67 members of primary health care teams providing palliative care. Data were analysed using a grounded theory approach.
RESULTS: We identified distinct differences in the drivers and barriers of community advanced cancer care coordination, which relate to identification and management, and access to effective pain management, and go some way to understanding variations in practice. These include proactive identification processes, time and resource pressures, unclear roles and responsibilities, poor multidisciplinary working, and inflexible models for referral and prescribing. These provide valuable insight into how professionals work together and independently within an infrastructure that can both support and hinder the provision of effective community palliative care.
CONCLUSIONS: Whilst the GSF is a guide for good practice, alone it is not a mechanism for change. Rather it provides a framework for describing quality of practice that was already occurring. Consequently, there will continue to be variations in practice.
BACKGROUND: People with cirrhosis have unmet needs, which could benefit from a palliative care approach. Developing effective services needs to be evidence based from those with personal experience. This review aims to explore; patient and family perspectives of perceived needs including communication; health professionals' perspectives on delivery of care and improving palliative care between specialities.
METHODS: A literature search conducted in Medline, Embase and CINAHL using key words reporting on the perspectives of patients with liver cirrhosis (18 years and over), family members or health professionals on the provision of care in liver cirrhosis. Study quality was assessed using the Mixed Methods Appraisal Tool. Qualitative and quantitative findings were grouped together according to the main relevant themes identified.
RESULTS: Nineteen research studies predominately from high income Western countries were identified, with a total sample consisting of 1413 patients, 31 family carers and 733 health professionals. Patient and family members had limited understanding about cirrhosis or its impact. They wanted better information about their disease, its treatment and help with psychological and practical needs. Health professionals had difficulty communicating about these issues to patients and their families. General Practitioners left care predominantly to the liver clinicians, who lacked confidence to have discussions about prognosis or future care preferences. The role of palliative care was recognised as important in caring for this group through earlier integration with liver and community services.
CONCLUSIONS: Health professionals need support to improve their communication with patients to address their broader needs beyond medical treatment and to develop new models to improve palliative care coordination between different medical specialities. Future research should focus on developing communication aides, testing existing tools to identify suitable patients for supportive care and explore robust ways of evaluating supportive care interventions, with more studies needed from middle and low income countries.
LAY SUMMARY: Patients and their families had poor understanding about advanced liver disease and about its impact on them. They need more information about the treatments they receive and how to get practical and psychological support. Liver doctors and GPs found it difficult to talk to patients and their families about the seriousness of advanced liver disease and the lack of healthcare options available to them if their condition gets worse. All doctors and nurses involved in the care of patients with advanced liver disease recognise that palliative and supportive care have an important role to help improve patient care.
REGISTRATION NUMBER: PROSPERO CRD42017064770.
BACKGROUND: Clinicians face considerable challenges in identifying patients with advanced heart failure who experience significant symptom burden at the end of life. Often, these patients are cared for in the community by a loved one who has limited access to support from specialist services, including palliative care.
AIM: The aims of this study were to explore caregivers' experience when caring for a loved one with advanced heart failure at the end of life and to identify any unmet psychosocial needs.
METHODS: This article reports findings of a qualitative study, using semistructured, one-to-one interviews with current and bereaved caregivers, who participated in a larger mixed-methods study. Interviews were conducted by a trained researcher, digitally recorded, transcribed verbatim, and imported to NVivo 11 for data management and coding. Data were analyzed using thematic analysis and an inductive approach.
RESULTS: The 30 interviews included 20 current caregivers and 10 bereaved caregivers. The central feature of the caregivers' experience was identified as being "a physical and emotional rollercoaster." There were 3 main themes identified: poor communication, living with uncertainty, and lack of service provision. These themes were supported by 6 subthemes: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported.
CONCLUSIONS: Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement.
Introduction: Both in the UK and internationally, discharge from an intensive care unit to home for end of life care is a rare and challenging occurrence. These challenges include clinicians' ability to identify appropriate patients in whom it is possible to communicate with about their wishes and preferences, the critical nature of their condition and the interface between hospital and community services.
Method: We present a case report of a patient who had been admitted to hospital with a myocardial infarction and subsequently suffered a cardiac arrest, from which he was successfully resuscitated. Subsequently, he suffered multi-organ failure, but despite treatments, the ceiling of care was reached. With a poor prognosis, medical and nursing staff engaged in advance care planning to determine his wishes and preferences at the end of life and to facilitate his discharge from the intensive care unit to his home.
Conclusion: This case study has highlighted that through good communication amongst patients, families and professionals and collaborative working across boundaries and organisations, appropriate patients in the critical care setting can have a real choice regarding where they wish to be cared for and die at the end of their life.