The current COVID-19 pandemic has necessitated the redeployment of NHS staff to acute-facing specialties, meaning that care of dying people is being provided by those who may not have much experience in this area. This report details how a plan, do, study, act (PDSA) approach was taken to implementing improved, standardised multidisciplinary documentation of individualised care and review for people who are in the last hours or days of life, both before and during the COVID-19 pandemic. The documentation and training produced is subject to ongoing review via the specialist palliative care team's continuously updated hospital deaths dashboard, which evaluates the care of patients who have died in the trust. We hope that sharing the experiences and outcomes of this process will help other trusts to develop their own pathways and improve the care of dying people through this difficult time and beyond.
Background: Palliative care seeks to support the physical, psycho-social and spiritual needs of patients and families who are facing life threatening diseases. Advantages of establishing a palliative care unit, or alternatively co-locating patients, include promoting optimal physical and psychological symptom management; increased family satisfaction; and facilitating resource allocation.
Objective: To design a stand-alone hospital unit to provide end of life care during a pandemic.
Setting: Mount Sinai Hospital (MSH), a 1,144 bed tertiary- and quaternary-care teaching facility and Brookdale Department of Geriatrics and Palliative Medicine of the Icahn School of Medicine at Mt Sinai.
Method: Tracking key indicators signaling the need for conversion to a COVID-19 unit, and identifying factors to facilitate a successful conversion.
Result/Implementation: Using previously identified key focused action categories as framework, we describe our successful palliative care unit (PCU) conversion into a COVID-19 care unit.
Conclusion: We believe that these operational insights gained from transforming our unit during COVID-19 will be helpful to other programs and institutions during a pandemic, or public health emergencies.
The objective of this study was to understand the organizational context of nurses' use of advance care plans (ACPs). We use a modified version of Bandera's social cognitive theory model to understand relationships between organizational constructs such as experience with ACPs and satisfaction with organizational support and oncology nurses' knowledge, behaviors, and perceptions around ACPs. The sample included practicing registered nurses with a major focus in oncology who were members of the Oncology Nursing Society in the United States, and nurses at medical hospital or community care settings were included. Institutional review board approval was obtained, and permission was granted from the oncology nursing organization for online surveys. A validated ACP survey was used to measure nurses' experiences and perceptions of working with ACP. Perceptions of ACP by patients, vicarious experience with ACP, direct experience of ACP, having received training, and perceptions of organizational support for ACP were all predictive of total ACP behaviors in the workplace. The final regression model had 3 independent variables and accounted for 33% of the variance in total ACP behaviors. Both vicarious and direct experience with ACP was associated with ACP behaviors in workplaces. This implies the need for more vicarious and direct training experiences, as well as organization support, to build self-efficacy to perform ACP.
Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution.
Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care.
Design: Scoping review
Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement.
Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home.
Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
Background: A community palliative care service (CPCS) identified its after-hours support as sub-optimal in avoiding acute hospitalisation and supporting patients to remain at home. It created and conducted a pilot of an extended hours palliative care service (EHPCS) using current resources.
Aims: To evaluate the efficacy of an extended hours palliative care service pilot.
Methods: Retrospective chart review of after-hours calls taken before the trial, usual care, was undertaken. During the trial, quantitative data was gathered of the outcome of each after-hours call, including outcomes of occasion of service, reason for and length and times of calls.
Findings: The extended hours palliative care service, compared with usual care, showed an almost 50% decrease in acute hospitalisation, nearly doubled after-hours palliative care unit admission and a 17% increase in patients staying in their home. EHPCS was positively received by CPCS staff, despite cost and workforce impact.
Conclusions: EHPCS can positively impact on reducing avoidable hospitalisations and facilitate palliative care patients to be in their preferred place of care.
Balancing the risk of coronavirus disease 2019 (COVID-19) for patients with cancer and health-care workers with the need to continue to provide effective treatment and care is changing how oncology teams work worldwide. “The pandemic has meant a transformation of every aspect of cancer care, irrespective of treatment, inpatient or outpatient, and radical or palliative intent,” said James Spicer (Guy's and St Thomas' Hospital NHS Foundation Trust, London, UK).
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.
En EHPAD, la prise en compte des attentes et des besoins de la personne dans la démarche du projet personnalisé se réfère directement aux recommandations de l’Anesm sur la bientraitance et s’inscrit dans la loi n° 2002-2 du 2 janvier 2002 rénovant l’action sociale et médico-sociale. L’auteure se questionne sur la nature du sens au travail des soignants lors des prises en soins globales et complètes des personnes accueillies. Une meilleure perception du travail par les salariés génère le besoin pour eux de s’adapter aux organisations induites par le respect des habitudes de vie du résident. La qualité des soins s’améliore pour répondre aux exigences institutionnelles. Cependant, les restrictions budgétaires obligent à repenser les activités de manière efficiente. Une enquête auprès de professionnels en responsabilité d’équipe, effectuée à partir d’entretiens semi directifs a mis en évidence des similitudes ainsi que des différences de pratiques managériales.
Au coeur de nombreuses réformes et d'un contexte socio-économique difficile, les établissements de santé sont amenés à repnser leurs organisations et les conditions de travail sont donc modifiées. En lien avec ce contexte en perpétuel changement et le travail propre de soignant, les émotions prennent une place prépondérante. En effet, la complexification des organisations impose aux différents acteurs de s'adapter et de réinventer de nouvelles manières de travailler ensemble. Les pratiques managériales doivent également être innovantes, afin d'accompagner les soignants qui risquent de perdre leur sens de leurs pratiques professionnelles. L'auteure s'est donc intéressée aux conditions permettant les échanges, le soutien et l'expression des professionnels de santé lors des situations à forte charge émotionnelle. L'enquête par entretiens semi-directifs auprès de cadres de santé et d'infirmières permettra d'interroger le lien entre la démarche participative et intelligence émotionnelle.
Hospitals remain the most common location of death in a significant number of countries, and specialist palliative care is positioned as a crucial resource for improving hospital care for those nearing end of life. Little is known, however, about a substantive aspect of this work: how hospital palliative clinicians anticipate and organize a patient's dying trajectory. In this paper I draw from a larger original ethnographic research study of palliative specialists in two Canadian hospitals. Abductive analysis resulted in framing their work as affective labour, both reflecting and re-creating a larger affective economy shaping the affective states of everyone involved in the provision and uptake of care. I articulate six analytically ideal outcomes of clinicians' affective labour that organize end of life, including: 1) proactive co-authorship of disease trajectory; 2) mutual acknowledgement of a dying trajectory; 3) naturalizing direction and outcome of care, 4) ensuring a minimum of social disruption, 5) identification as compassionate and efficient care providers, and 6) increased specialist knowledge and interventions. In so doing, clinicians' practices become understandable as labour to meet a diversity of - at times conflicting - individual, organizational, and societal mandates that necessarily include, but extend well beyond, the patient and her immediate social network. This is the first study to consider hospital palliative care as an affective economy, and presents a theoretically innovative and empirically grounded model to advance new ways of conceptualizing hospital palliative care. I conclude by considering how this model, and the unique insights it affords, can inform the future development of end of life care in hospital settings.
BACKGROUND: International evidence on the outcome of generalist versus specialist palliative care provision in palliative care trajectories is limited and varied. In general, intervention studies can influence the organisation of palliative care practice and professional collaborations. However, randomised clinical trials in palliative care rarely consider the organisational significance of the studies, as experienced by the professionals involved. DOMUS is the abbreviation for a Danish intervention study designed as a randomised clinical trial, investigating an accelerated transition from oncological to specialist palliative care at home for patients with incurable cancer. Alongside conducting the palliative care intervention study, we wanted to discover the perspectives of the healthcare professionals involved.
AIM: To explore the organisational significance of the DOMUS intervention study as experienced by the professionals involved.
DESIGN: A qualitative interview study, using thematic content analysis and inspired by organisational theory.
SETTING/PARTICIPANTS: Thirty-eight professionals from four units involved in the DOMUS intervention study took part in 10 groups and six individual interviews.
RESULTS: The DOMUS randomised clinical trial intervention influenced and sometimes disrupted both the ways of organising, collaborating and practising palliative care, and patients' and relatives' understanding of their own situation. It did this by (1) referring a broader palliative care target group to specialist palliative care, leading to (2) different palliative care needs, professional tasks, and perceived impact on (3) the organisation of palliative care and (4) professional collaboration.
CONCLUSION: Professionals involved in the DOMUS palliative care intervention found that the study had organisational significance, with an influence on professionals, patients and relatives. Specialist palliative care in Denmark is devoted organisationally and professionally to patients with severe or complex palliative care needs. Hence, new ways of organising palliative care for people in the earlier stages of their disease are needed.
OBJECTIVES: Out-of-hours (OOH) primary care services are contacted in the last 4 weeks of life by nearly 30% of all patients who die, but OOH palliative prescribing remains poorly understood. Our understanding of prescribing demand has previously been limited by difficulties identifying palliative patients seen OOH. This study examines the volume and type of prescriptions issued by OOH services at the end of life.
METHODS: A retrospective cohort study was performed by linking a database of Oxfordshire OOH service contacts over a year with national mortality data, identifying patients who died within 30 days of OOH contact. Demographic, service and prescribing data were analysed.
RESULTS: A prescription is issued at 14.2% of contacts in the 30 days prior to death, compared with 29.9% of other contacts. The most common prescriptions were antibiotics (22.2%) and strong opioids (19%). 41.8% of prescriptions are for subcutaneously administered medication. Patients who were prescribed a syringe driver medication made twice as many OOH contacts in the 30 days prior to death compared with those who were not.
CONCLUSION: Absolute and relative prescribing rates are low in the 30 days prior to death. Further research is required to understand what occurs at these non-prescribing end of life contacts to inform how OOH provision can best meet the needs of dying patients. Overall, relatively few patients are prescribed strong opioids or syringe drivers. When a syringe driver medication is prescribed this may help identify patients likely to be in need of further support from the service.
Context: Organization and delivery of palliative care (PC) services vary from one country to another. In Nigeria, PC has continued to develop, yet the organization and scope of PC is not widely known by most clinicians and the public.
Objectives: The aim of the study is to identify PC services available in a Nigerian Hospital and how they are organized.
Methods: This ethnographic study, utilized documentary analysis, participant observation, and ethnographic interviews (causal chat during observation and individual interviews) to gather data from members of PC team comprising doctors (n = 10), nurses (n = 4), medical social workers (n = 2), a physiotherapist, and a pharmacist, as well nurses from the oncology department (n = 3). Data were analyzed using Spradley's framework for ethnographic data analysis.
Results: PC was found to be largely adult patient-centered. A hospital-based care delivery model, in the forms of family meetings, in- and out-patients' consultation services, and a home-based delivery model which is primarily home visits conducted once in a week, were the two models of care available in the studied hospital. The members of the PC team operated two shift patterns from 7:00 am to 2.00 pm and a late shift from 2:00 pm to 7:00 pm instead of 24 h service provision.
Conclusions: Although PC in this hospital has made significant developmental progress, the organization and scope of services are suggestive of the need for more development, especially in manpower and collaborative care. This study provided knowledge that could be used to improve the clinical practice of PC in various cross-cultural Nigerian societies and other African context, as well as revealing areas for PC development.
Interest and appreciation for palliative care (PC) has resulted in increased demand for both PC services and education. The PC rotation has been shown to improve PC knowledge in medical students (MS) and internal medicine (IM) residents, and PC specialists stand poised to direct the primary PC education of learners at different levels of training. To concurrently teach learners of different levels of training on a busy PC service, we created an educational system that emphasizes management of learner schedules, organization of teaching activities, faculty development to improve teaching skills, and learner self-evaluation. Both MS and IM residents showed an improvement in self-assessed competence as well as increased comfort level with seriously ill patients after PC rotation. Careful adjustment of learner schedules has accommodated an increasing number of learners, while maintaining a low learner to faculty ratio. The PC educators face an exciting and daunting challenge as the number of patients with PC needs and the number of learners requesting PC experience grow. We continue to improve milestone-based PC assessment tools, to invest in faculty development, and to explore innovative ways to support PC educators as they strive to provide consistent PC education that is both useful for learners and can be incorporated into busy PC clinical practice.
There is no doubt that the organization of healthcare is currently shifting, partly in response to changing macrolevel policies. Studies of healthcare policies often do not consider healthcare workers' experiences of policy change, thus limiting our understanding of when and how policies work. This article uses longitudinal qualitative data, including participant observation and semistructured interviews with workers within hospice care as their organizations shifted in response to a Medicare policy change. Prior to the policy change, I find that the main innovation of hospice-the interdisciplinary team-is able to resist logics from the larger medical institution. However, when organizational pressures increase, managers and workers adjust in ways that reinforce medical logics and undermine the interdisciplinary team. These practices illustrate processes by which rationalization of healthcare affects workers' experiences and the type of care available to patients.
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.
Qu'est-ce que l'interdisciplinarité ? Ce mode d'action vise un objectif commun, au bénéfice de la personne soignée et de ses proches, en faisant collaborer les différents professionnels du soin. Elle nécessite que ceux-ci, compétents dans leur champ disciplinaire, apprennent à se connaître, à s'écouter et à se faire confiance. La ritualisation des réunions, s'appuyant sur une méthodologie et une organisation formalisées, permettent de l'initier.
Ce livre s'adresse à tous les professionnels de santé, en formation ou en exercice, qui s'interrogent sur la dynamique du soin et sur leur rôle au sein d'une équipe soignante. Il a été pensé comme un guide qui permettra aux équipes de mettre en place des actions interdisciplinaires dans leur quotidien.
BACKGROUND: In Germany, some units of specialized palliative care (SPC) offer a 6- to 12-month rotation for resident physicians (RPs) and fellows from different specialties.
OBJECTIVE: This pilot study aimed to evaluate feasibility of assessing palliative care knowledge (PCK) and palliative care self-efficacy (PCSE) using a paper-based questionnaire.
METHODS: Palliative care knowledge and PCSE were assessed by introducing a score, followed by a descriptive analysis (determination of frequency, mean, median, and range) using nonparametric tests ( 2 test, Mann–Whitney U test).
RESULTS:: We assessed 17 RPs following SPC rotation and 16 board-certified specialists (BCSs) who had no experience in SPC from 3 German comprehensive cancer centers. Resident physicians were predominantly enrolled in residency programs of hematology and oncology (n = 6), anesthesiology (n = 6), and psychosomatic medicine (n = 3). Resident physicians rotated between year 1 and 8 of residency. Fifteen RPs (88%) had elected this rotation and 72% preferred 12-month duration. The total PCK score of PCK was 27 (RPs) and 24 (BCSs; P = .002). Mean PCSE scores were 46 (RPs) and 39 (BCSs; P = .016). Of 71% of RPs, only 27% of BCSs knew how support of hospice service was initiated ( P = .004). Participants rated the items as comprehensible (n = 24; 73%), relevant (n = 25; 76%) and the questionnaire as adequately long (n = 23; 70%).
CONCLUSION: An improved PCK and PCSE were observed in physicians who rotated through an SPC unit; this resulted in an increased tangibility of local palliative care and hospice services. The questionnaire was comprehensible, relevant in terms of content, and adequate in length for a prospective multicenter survey.
L’épuisement professionnel des soignants est particulièrement fréquent en cancérologie. Ses causes en sont plurifactorielles, car relevant quasiment toujours de l’association de facteurs personnels et professionnels. Ceux liés au travail peuvent être séparés en cinq catégories : le type de travail, la charge de travail, les conflits interpersonnels, les facteurs organisationnels et les facteurs managériaux. La qualité de vie au travail est un concept plus récent qui s’inscrit dans le champ de la psychologie positive. La démarche participative est un modèle organisationnel qui reposait initialement sur quatre composantes : la formation interne, les staffs pluriprofessionnels, le soutien aux équipes et la démarche projet. Récemment nous avons rajouté une cinquième composante devant le constat de la nécessité d’espaces d’échanges entre les médecins et les cadres de santé des services pour que le modèle marche. Ce modèle est un critère prioritaire HAS d’accréditation des établissements depuis la V 2010 pour la prise en charge des patients en soins palliatifs dans tous les services de soins. Dans la dernière partie de cet article nous verrons l’impact des facteurs managériaux et organisationnels mais également du modèle organisationnel de la démarche participative sur la qualité de vie au travail des soignants et sur la qualité des soins offerts aux patients et à leurs proches.
BACKGROUND: Patients receiving palliative care are often at increased risk of unsafe care with the out-of-hours setting presenting particular challenges. The identification of improved ways of delivering palliative care outside working hours is a priority area for policymakers.
AIM:: To explore the nature and causes of unsafe care delivered to patients receiving palliative care from primary-care services outside normal working hours.
DESIGN: A mixed-methods cross-sectional analysis of patient safety incident reports from the National Reporting and Learning System. We characterised reports, identified by keyword searches, using codes to describe what happened, underlying causes, harm outcome, and severity. Exploratory descriptive and thematic analyses identified factors underpinning unsafe care.
SETTING/PARTICIPANTS:: A total of 1072 patient safety incident reports involving patients receiving sub-optimal palliative care via the out-of-hours primary-care services.
RESULTS: Incidents included issues with: medications (n = 613); access to timely care (n = 123); information transfer (n = 102), and/or non-medication-related treatment such as pressure ulcer relief or catheter care (n = 102). Almost two-thirds of reports (n = 695) described harm with outcomes such as increased pain, emotional, and psychological distress featuring highly. Commonly identified contributory factors to these incidents were a failure to follow protocol (n = 282), lack of skills/confidence of staff (n = 156), and patients requiring medication delivered via a syringe driver (n = 80).
CONCLUSION: Healthcare systems with primary-care-led models of delivery must examine their practices to determine the prevalence of such safety issues (communication between providers; knowledge of commonly used, and access to, medications and equipment) and utilise improvement methods to achieve improvements in care.