Multiple points of system failure underpin continuous subcutaneous infusion safety incidents in palliative care: A mixed methods analysis.

BACKGROUND: About 25% of palliative medication incidents involve continuous subcutaneous infusions. Complex structural and human factor issues make these risk-prone interventions. Detailed analysis of how this safety-critical care can be improved has not been undertaken. Understanding context, contributory factors and events leading to incidents is essential. AIMS: (1) Understand continuous subcutaneous infusion safety incidents and their impact on patients and families; (2) Identify targets for system improvements by learning from recurrent events and contributory factors. DESIGN: Following systematic identification and stratification by degree of harm, a mixed methods analysis of palliative medication incidents involving continuous subcutaneous infusions comprising quantitative descriptive analysis using the PatIent SAfety (PISA) classification system and qualitative narrative analysis of free-text reports. SETTING/PARTICIPANTS: Palliative medication incidents (n = 7506) reported to the National Reporting and Learning System, England and Wales (2016-2021). RESULTS: About 1317/7506 incidents involved continuous subcutaneous infusions with 943 (72%) detailing harms. Primary incidents (most proximal to patient outcomes) leading to inappropriate medication use (including not using medication when it was needed) were underpinned by breakdowns in three major medication processes: monitoring and supply (405, 31%), administration (383, 29%) and prescribing (268, 20%). Recurring contributory factors included discontinuity of care within and between settings, inadequate time, inadequate staffing and unfamiliarity with protocols. Psychological harms for patients and families were identified. CONCLUSIONS: System infrastructure is needed to enable timely supply of medication and equipment, effective coordinated use of continuous subcutaneous infusions, communication and continuity of care. Training is needed to improve incident descriptions so these pinpoint precise targets for safer care.

Exploring the contextual assumptions, interventions and outcomes of digital advance care planning systems: A theory of change approach to understand implementation and evaluation.

BACKGROUND: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation. AIM: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems. DESIGN: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation. PARTICIPANTS: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities). RESULTS: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated. CONCLUSIONS: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.

How do medical schools influence their students' career choices? A realist evaluation.

INTRODUCTION: The career choices of medical graduates vary widely between medical schools in the UK and elsewhere and are generally not well matched with societal needs. Research has found that experiences in medical school including formal, informal and hidden curricula are important influences. We conducted a realist evaluation of how and why these various social conditions in medical school influence career thinking. METHODS: We interviewed junior doctors at the point of applying for speciality training. We selected purposively for a range of career choices. Participants were asked to describe points during their medical training when they had considered career options and how their thinking had been influenced by their context. Interview transcripts were coded for context-mechanism-outcome (CMO) configurations to test initial theories of how career decisions are made. RESULTS: A total of 26 junior doctors from 12 UK medical schools participated. We found 14 recurring CMO configurations in the data which explained influences on career choice occurring during medical school. DISCUSSION: Our initial theories about career decision-making were refined as follows: It involves a process of testing for fit of potential careers. This process is asymmetric with multiple experiences needed before deciding a career fits ('easing in') but sometimes only a single negative experience needed for a choice to be ruled out. Developing a preference for a speciality aligns with Person-Environment-Fit decision theories. Ruling out a potential career can however be a less thought-through process than rationality-based decision theories would suggest. Testing for fit is facilitated by longer and more authentic undergraduate placements, allocation of and successful completion of tasks, being treated as part of the team and enthusiastic role models. Informal career guidance is more influential than formal. We suggest some implications for medical school programmes.

How well do UK assistantships equip medical students for graduate practice? Think EPAs.

The goal of better medical student preparation for clinical practice drives curricular initiatives worldwide. Learning theory underpins Entrustable Professional Activities (EPAs) as a means of safe transition to independent practice. Regulators mandate senior assistantships to improve practice readiness. It is important to know whether meaningful EPAs occur in assistantships, and with what impact. Final year students at one UK medical school kept learning logs and audio-diaries for six one-week periods during a year-long assistantship. Further data were also obtained through interviewing participants when students and after three months as junior doctors. This was combined with data from new doctors from 17 other UK schools. Realist methods explored what worked for whom and why. 32 medical students and 70 junior doctors participated. All assistantship students reported engaging with EPAs but gaps in the types of EPAs undertaken exist, with level of entrustment and frequency of access depending on the context. Engagement is enhanced by integration into the team and shared understanding of what constitutes legitimate activities. Improving the shared understanding between student and supervisor of what constitutes important assistantship activity may result in an increase in the amount and/or quality of EPAs achieved.

Challenges and opportunities for improvement when people with an intellectual disability or serious mental illness also need palliative care: A qualitative meta-ethnography.

BACKGROUND: People with diagnoses of intellectual disability or serious mental illness have higher mortality rates due to physical comorbidities; better understanding is needed to guide best practice in provision of palliative care for these populations. AIMS: To identify multivoiced perspectives, drawn from lived experience of: what works, and what does not, in palliative care for people with intellectual disability or serious mental illness; challenges in, and opportunities to improve, palliative care. DESIGN: A systematically constructed qualitative meta-ethnography. Protocol published (PROSPERO: CRD42021236616). DATA SOURCES: MEDLINE, PsychINFO, CINAHL PLUS and Embase used without date limitations. Papers published in English, containing qualitative data on palliative care provision for people with a diagnosis of intellectual disability or serious mental illness were included. Global five-point strength score applied for relevance/quality appraisal. RESULTS: Familiarity (of location, people and/or things) is important for good palliative care. Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common. Adapting training for palliative care staff to address concerns and beliefs about mental illness is one of the methods that helps avoid diagnostic overshadowing. Proactive identification of service arrangements to meet needs of persons with personality, psychotic, delusional and bipolar affective disorders will help optimise care. CONCLUSIONS: Evidence, including the voices of people with intellectual disability or serious mental illness is urgently needed to guide efforts to improve their access to and experience of palliative care. More evidence is especially needed to understand, develop and implement best practice for people with psychosis, bipolar affective disorder, mania and personality disorder.

Right needle, right patient, right time? A national flash-mob audit of thromboprophylaxis in palliative care.

BACKGROUND: The prevention of hospital associated thrombosis in palliative care remains controversial yet many countries recommend the documented risk assessment and where appropriate pharmacological prophylaxis of inpatients with advanced cancer. AIM: To audit adherence to national guidelines which require hospitalised patients to be risk assessed and receive appropriate thromboprophylaxis. DESIGN: A one day "flash-mob" audit across multiple clinical inpatient sites across the United Kingdom. SETTING/PARTICIPANTS: Inpatients receiving palliative care within hospitals, hospices and specialist palliative care units across the United Kingdom. RESULTS: Data were collected from 1125 patients (514 hospital and 611 hospice/specialist palliative care units). Appropriate thromboprophylaxis was observed in 90 % of hospital and 90 % hospice/specialist palliative care units. Documented risk assessment was only found in 79 % and 71 % of patient notes respectively. Pharmacological thromboprophylaxis was contraindicated in 88 % of hospice/specialist palliative care unit patients due to bleeding risk or receiving end-of-life care. Twenty-four percent of patients in hospital had contraindications due to receiving end of life care, bleeding risk and thrombocytopenia. Patients in hospice/specialist palliative care units were of poorer performance status prior to admission with a history of gradual deterioration. Hospitalised patients were more likely to have been admitted following an acute deterioration of previous good performance status. CONCLUSION: Thromboprophylaxis guidelines were followed correctly for the majority of patients. There were considerable differences in the demographics of patients according to place of admission. Patients admitted to hospice/specialist palliative care units were sicker and had more contraindications to prophylaxis than those admitted to hospital. Thromboprophylaxis focused research data conducted in hospices is unlikely to be applicable to the care of palliative care patients admitted acutely to hospital.

Delivering mental healthcare to patients with a depressive disorder alongside a life-limiting illness.

The concurrent assessment and treatment of mental health disorders and palliative illnesses is complex. Affective disorders are more prevalent in people who need palliative care. Identifying the most suitable place of care and multi-professional multidisciplinary teams to provide support can be challenging and bewildering for professionals and patients. Mental health clinicians may be left with a sense of therapeutic nihilism, while palliative care teams can feel limited by the mental health resources available for treating those living with significant physical and mental health needs. We discuss the fictional case of a gentleman with metastatic bowel cancer who has developed symptoms of depressive disorder and identify how taking a pragmatic patient-centred approach can offer a route through potential dilemmas when seeking to provide individualised care based on needs. We used lay person experience alongside our own experiences of novel mechanisms for cross-specialty working in order to direct psychiatric trainees' approaches to such cases.

How much information is 'reasonable'? A qualitative interview study of the prescribing practices of palliative care professionals.

BACKGROUND: Prescribing clinicians have to negotiate ambiguities around information provision and consent for medications on a daily basis, despite the availability of professional guidance. AIM: This study aims to explore some of the many factors prescribing clinicians in the United Kingdom take into account when deciding what information to give to patients about medication choices, and when. DESIGN: In depth face-to-face interviews, utilising both a hypothetical scenario and semi-structured prompts, were conducted in order to elicit extended reflections on how clinicians individually work through such dilemmas and make decisions. SETTING/PARTICIPANTS: Ten prescribing clinicians (doctors and nurses) from a large combined team of National Health Service (NHS) secondary and community palliative care providers in England. RESULTS: Palliative care staff regularly face choices about information provision in prescribing discussions, in particular when considering whether information might increase distress. Participants presented three overlapping framings that helped them assess the range of factors that could potentially be taken into account; (1) assessing the individual patient, (2) tailoring the provision of information and (3) jointly forming a plan. CONCLUSIONS: Information provision about medication choices and effects is a demanding, ongoing process, requiring nuanced judgements that constitute an unacknowledged yet significant aspect of clinical workload. Although current medical guidelines allow clinical discretion about information provision, this can leave individual clinicians feeling vulnerable. Further evolution of guidelines needs to establish a more sophisticated way to acknowledge professional and legal requirements, whilst also promoting professional autonomy and judgement.

Getting palliative medications right across the contexts of homes, hospitals and hospices: protocol to synthesise scoping review and ethnographic methods in an activity theory analysis.

INTRODUCTION: Prescribing and medication use in palliative care is a multistep process. It requires systems coordination and is enacted through activities of patients, informal carers and professionals. This study compares practice to idealised descriptions of what should happen; identifying when, how and why process disturbances impact on quality and safety. Our objectives are to:Document an intended model (phase 1, scoping review).Refine the model with study of practice (phase 2, ethnography).Use the model to pinpoint 'hot' (viewed as problematic by participants) and 'cold' spots (observed as problematic by researchers) within or when patients move across three contexts-hospice, hospital and community (home).Create learning recommendations for quality and safety targeted at underlying themes and contributing factors. METHODS AND ANALYSIS: The review will scope Ovid Medline, CINAHL and Embase, Google Scholar and Images-no date limits, English language only. The Population (palliative), Concept (medication use), Context (home, hospice, hospital) framework defines inclusion/exclusion criteria. Data will be extracted to create a model illustrating how processes ideally occur, incorporating multiple steps of typical episodes of prescribing and medication use for symptom control. Direct observations, informal conversations around acts of prescribing and medication use, and semistructured interviews will be conducted with a purposive sample of patients, carers and professionals. Drawing on activity theory, we will synthesise analysis of both phases. The analysis will identify when, how and why activities affect patient safety and experience. Generating a rich multivoiced understanding of the process will help identify meaningful targets for improvement. ETHICS AND DISSEMINATION: Ethical approval granted by the Camden & Kings Cross NHS Regional Ethics Committee (21/LO/0459). A patient and public involvement (PPI) coinvestigator, a multiprofessional steering group and a PPI engagement group are working with the research team. Dissemination of findings is planned through peer-reviewed publications and a stakeholder (policymakers, commissioners, clinicians, researchers, public) report/dissemination event.

Which human factors design issues are influencing system performance in out-of-hours community palliative care? Integration of realist approaches with an established systems analysis framework to develop mid-range programme theory.

OBJECTIVE: To develop mid-range programme theory from perceptions and experiences of out-of-hours community palliative care, accounting for human factors design issues that might be influencing system performance for achieving desirable outcomes through quality improvement. SETTING: Community providers and users of out-of-hours palliative care. PARTICIPANTS: 17 stakeholders participated in a workshop event. DESIGN: In the UK, around 30% of people receiving palliative care have contact with out-of-hours services. Interactions between emotions, cognition, tasks, technology and behaviours must be considered to improve safety. After sharing experiences, participants were presented with analyses of 1072 National Reporting and Learning System incident reports. Discussion was orientated to consider priorities for change. Discussions were audio-recorded and transcribed verbatim by the study team. Event artefacts, for example, sticky notes, flip chart lists and participant notes, were retained for analysis. Two researchers independently identified context-mechanism-outcome configurations using realist approaches before studying the inter-relation of configurations to build a mid-range theory. This was critically appraised using an established human factors framework called Systems Engineering Initiative for Patient Safety (SEIPS). RESULTS: Complex interacting configurations explain relational human-mediated outcomes where cycles of thought and behaviour are refined and replicated according to prior experiences. Five such configurations were identified: (1) prioritisation; (2) emotional labour; (3) complicated/complex systems; (4a) system inadequacies and (4b) differential attention and weighing of risks by organisations; (5) learning. Underpinning all these configurations was a sixth: (6a) trust and access to expertise; and (6b) isolation at night. By developing a mid-range programme theory, we have created a framework with international relevance for guiding quality improvement work in similar modern health systems. CONCLUSIONS: Meta-cognition, emotional intelligence, and informal learning will either overcome system limitations or overwhelm system safeguards. Integration of human-centred co-design principles and informal learning theory into quality improvement may improve results.

Palliative care training in undergraduate medical, nursing and allied health: a survey.

OBJECTIVES: Impending death is poorly recognised. Many undergraduate healthcare professionals will not have experience of meeting or caring for someone who is dying. As death can occur in any setting, at any time, it is vital that all healthcare students, regardless of the setting they go on to work in, have end-of-life care (EOLC) training. The aim was to determine current palliative care training at the undergraduate level, in multiple professions, in recognising and communicating dying. METHODS: Current UK undergraduate courses in medicine, adult nursing, occupational therapy, social work and physiotherapy were included. All courses received an email asking what training is currently offered in the recognition and communication of dying, and what time was dedicated to this. RESULTS: A total of 73/198 (37%) courses responded to the request for information. 18/20 medical courses provided training in recognising when patients were dying (median 2 hours), and 17/20 provided training in the communication of dying (median 3 hours). 80% (43/54) of nursing and allied health professional courses provided some training in EOLC. Many of the course organisers expressed frustration at the lack of resources, funding and time to include more training. Those courses with more palliative care provision often had a 'champion' to advocate for it. CONCLUSIONS: Training in EOLC was inconsistent across courses and professions. Further research is needed to understand how to remove the barriers identified and to improve the consistency of current training.

Understanding the Potential for Pharmacy Expertise in Palliative Care: The Value of Stakeholder Engagement in a Theoretically Driven Mapping Process for Research.

Potentially avoidable medication-related harm is an inherent risk in palliative care; medication management accounts for approximately 20% of reported serious incidents in England and Wales. Despite their expertise benefiting patient care, the routine contribution of pharmacists in addressing medication management failures is overlooked. Internationally, specialist pharmacist support for palliative care services remains under-resourced. By understanding experienced practices ('what happens in the real world') in palliative care medication management, compared with intended processes ('what happens on paper'), patient safety issues can be identified and addressed. This commentary demonstrates the value of stakeholder engagement and consultation work carried out to inform a scoping review and empirical study. Our overall goal is to improve medication safety in palliative care. Informal conversations were undertaken with carers and various specialist and non-specialist professionals, including pharmacists. Themes were mapped to five steps: decision-making, prescribing, monitoring and supply, use (administration), and stopping and disposal. A visual representation of stakeholders' understanding of intended medicines processes was produced. This work has implications for our own and others' research by highlighting where pharmacy expertise could have a significant additional impact. Evidence is needed to support best practice and implementation, particularly with regard to supporting carers in monitoring and accessing medication, and communication between health professionals across settings.

Multidisciplinary team meetings in palliative care: an ethnographic study.

OBJECTIVES: Multidisciplinary team meetings are a regular feature in the provision of palliative care, involving a range of professionals. Yet, their purpose and best format are not necessarily well understood or documented. This article describes how hospital and community-based palliative care multidisciplinary team meetings operate to elucidate some of their main values and offer an opportunity to share examples of good practice. METHODS: Ethnographic observations of over 70 multidisciplinary team meetings between May 2018 and January 2020 in hospital and community palliative care settings in intercity London. These observations were part of a larger study examining palliative care processes. Fieldnotes were thematically analysed. RESULTS: This article analyses how the meetings operated in terms of their setup, participants and general order of business. Meetings provided a space where patients, families and professionals could be cared for through regular discussions of service provision. CONCLUSIONS: Meetings served a variety of functions. Alongside discussing the more technical, clinical and practical aspects that are formally recognised aspects of the meetings, an additional core value was enabling affectual aspects of dealing with people who are dying to be acknowledged and processed collectively. Insight into how the meetings are structured and operate offer input for future practice.

Mixed-methods study protocol: do national reporting and learning system medication incidents in palliative care reflect patient and carer concerns about medication management and safety?

INTRODUCTION: Approximately 20% of serious safety incidents involving palliative patients relate to medication. These are disproportionately reported when patients are in their usual residence when compared with hospital or hospice. While patient safety incident reporting systems can support professional learning, it is unclear whether these reports encompass patient and carer concerns with palliative medications or interpersonal safety. AIM: To explore and compare perceptions of (un)safe palliative medication management from patient, carer and professional perspectives in community, hospital and hospice settings. METHODS AND ANALYSIS: We will use an innovative mixed-methods study design combining systematic review searching techniques with cross-sectional quantitative descriptive analysis and interpretative qualitative metasynthesis to integrate three elements: (1) Scoping review: multiple database searches for empirical studies and first-hand experiences in English (no other restrictions) to establish how patients and informal carers conceptualise safety in palliative medication management. (2)Medication incidents from the England and Wales National Reporting and Learning System: identifying and characterising reports to understand professional perspectives on suboptimal palliative medication management. (3) Comparison of 1 and 2: contextualising with stakeholder perspectives. PATIENT AND PUBLIC INVOLVEMENT: Our team includes a funded patient and public involvement (PPI) collaborator, with experience of promoting patient-centred approaches in patient safety research. Funded discussion and dissemination events with PPI and healthcare (clinical and policy) professionals are planned. ETHICS AND DISSEMINATION: Prospective ethical approval granted: Cardiff University School of Medicine Research Ethics Committee (Ref 19/28). Our study will synthesise multivoiced constructions of patient safety in palliative care to identify implications for professional learning and actions that are relevant across health and social care. It will also identify changing or escalating patterns in palliative medication incidents due to the COVID-19 pandemic. Peer-reviewed publications, academic presentations, plain English summaries, press releases and social media will be used to disseminate to the public, researchers, clinicians and policy-makers.

Learning from patient safety incidents involving acutely sick adults in hospital assessment units in England and Wales: a mixed methods analysis for quality improvement.

OBJECTIVE: Six per cent of hospital patients experience a patient safety incident, of which 12% result in severe/fatal outcomes. Acutely sick patients are at heightened risk. Our aim was to identify the most frequently reported incidents in acute medical units and their characteristics. DESIGN: Retrospective mixed methods methodology: (1) an a priori coding process, applying a multi-axial coding framework to incident reports; and, (2) a thematic interpretative analysis of reports. SETTING: Patient safety incident reports (10 years, 2005-2015) collected from the National Reporting and Learning System, which receives reports from hospitals and other care settings across England and Wales. PARTICIPANTS: Reports describing severe harm/death in acute medical unit were identified. MAIN OUTCOME MEASURES: Incident type, contributory factors, outcomes and level of harm were identified in the included reports. During thematic analysis, themes and metathemes were synthesised to inform priorities for quality improvement. RESULTS: A total of 377 reports of severe harm or death were confirmed. The most common incident types were diagnostic errors (n = 79), medication-related errors (n = 61), and failures monitoring patients (n = 57). Incidents commonly stemmed from lack of active decision-making during patient admissions and communication failures between teams. Patients were at heightened risk of unsafe care during handovers and transfers of care. Metathemes included the necessity of patient self-advocacy and a lack of care coordination. CONCLUSION: This 10-year national analysis of incident reports provides recommendations to improve patient safety including: introduction of electronic prescribing and monitoring systems; forcing checklists to reduce diagnostic errors; and increased senior presence overnight and at weekends.