A qualitative interview study exploring continuity within a community integrated palliative care model and the influence of remote and digital approaches to care.

BACKGROUND: Demand for palliative care is rising. Recent UK policy approaches promote integrated care models - collaborations between generalist practitioners and multidisciplinary specialists - and remote and digital practices. The extent to which different forms of continuity are supported within this evolving context is currently unclear. AIM: To explore the experience of continuity and impact of remote and digital practices within an integrated palliative care model. DESIGN & SETTING: A qualitative interview study of patients and bereaved relatives recruited from a GP practice list and healthcare professionals delivering the integrated palliative care service for that population. METHOD: 20 narrative and semi-structured interviews were conducted with 22 patients, relatives, and professionals between May 2022 and November 2023. They explored how care was delivered or received, focusing on coherency and the use of remote and digital practices. Data were theorized using a novel framework that considered psychodynamic, biomedical, sociotechnical, and sociopolitical domains of continuity. RESULTS: The need for human care and connection were of primary importance and affected by intersubjective, biomedical, sociotechnical, and sociopolitical factors that influenced continuity of care. Despite the logistical ease of remote and digital practices, professionals had to work harder or around technologies to provide a 'caring' service. This was exacerbated by a lack of co-localisation, loss of longitudinal relationships, and reduction in tacit knowledge. CONCLUSION: Numerous complex factors and the exacerbating effects of remote and digital practices influence continuity and coherency within an integrated palliative care model.

Prion diseases motor and neuropsychiatric symptom cluster pharmacotherapy: structured scoping review.

BACKGROUND: Prion diseases are a group of rare, neurodegenerative conditions that are invariably fatal and cause a variety of symptoms, which can prove challenging to control. Through this paper, we aim to review the current evidence regarding pharmacological management of neuropsychiatric and motor symptoms of prion disease as well as draw on experts' and relatives' experience, to evaluate the current evidence and provide recommendations moving forwards. METHODS: A scoping review of the literature for pharmacological management of symptoms was conducted using the systematic review tool, COVIDENCE, with searches conducted through four databases. 120 papers were selected for inclusion, and data extraction was carried out by two independent reviewers. Given the lack of high-quality data and small numbers, no further attempt at statistical analysis was made, and results are presented in a thematic synthesis. RESULTS: Although a broad range of approaches and pharmacotherapies are trialled to manage these challenging symptoms, there are patterns emerging of some efficacy seen with the use of benzodiazepines, antipsychotic and anticonvulsant medications in both motor and neuropsychiatric symptoms in prion disease. These approaches and associated challenges were reflected in international expert opinion that was gathered via online survey. CONCLUSION: There continues to be a paucity of good-quality evidence and we suggest a need for longitudinal, population-based and standardised research to allow a robust evidence base, which in turn will guide excellent symptom control and end of life care for this group of complex patients.

Anticoagulation for patients with mechanical heart valves at the end of life: understanding clinician attitudes and improving decision making.

BACKGROUND: Decisions regarding continuation or cessation of anticoagulation for patients with mechanical heart valves nearing the end of life represent a difficult balance of risks. The risk of suffering and disability that may result from thromboembolism must be weighed against the burden of continued anticoagulation therapy and the excess bleeding risk this confers. Data allowing quantification of the relative risks are scarce, and this translates to a lack of published guidance on the topic. Here we describe how this lack of guidance is impacting upon healthcare professionals and their patients through misconception of risk and under-confidence in decision-making. We also present local guidance we have developed that aims to improve objective risk assessment and promote individualised, patient-centred decision-making. METHODS: Our survey was developed by specialists in palliative care and cardiology. The survey explored respondents' conception of the risks of stopping anticoagulation for patients with mechanical heart valves at the end of life, as well as their ability to identify patient factors that modify this risk. Respondent decision-making, confidence, and readiness to accept further guidance were also explored. Healthcare professionals at two university teaching hospitals were invited to participate in the survey. The study population included hospital specialists, generalists, and trainees. RESULTS: Fifty-two healthcare professionals completed the survey, including 16 palliative care specialists. 47 (90%) of respondents felt poorly informed of the risks of stopping or continuing anticoagulation. 6 (12%) correctly identified risk of thromboembolism in patients with mechanical heart valves who are not anticoagulated. The remainder overestimated risk by a factor of two (18, 35%) or five (27, 52%). 49 (94%) would find further guidance on this issue helpful. CONCLUSIONS: The healthcare professionals we surveyed felt poorly informed and ill-equipped to make decisions regarding anticoagulation for patients with mechanical heart valves at the end of life. They were objectively poor at estimating the risks involved. In the absence of robust data to support protocolisation of practice, we believe these decisions must be taken in conversation with the patient, taking account of individual circumstances and priorities. We have developed guidance for local use to support such individualised decision-making.

Postural nausea due to platypnea orthodeoxia.

Platypnea orthodeoxia is an uncommon condition but given its associations with severe lung disease and advancing age, it might be seen in the palliative care population. Presentation is classical in the association of symptoms with postural change. It should be considered when patients present with breathlessness or desaturation given the minimally invasive tests of echocardiography, and the potential for procedural resolution of the defect and thus symptoms. Further, there has not previously been reported a case presenting with nausea (rather than dyspnoea) secondary to platypnea orthodeoxia syndrome. This unusual presentation is a reminder that there is a broad range of potential subjective experiences of the same physiological events. Careful history and examination are vital in elucidating the underlying cause.

Barriers, Facilitators, and Potential Solutions to Advancing Interoperable Clinical Decision Support: Multi-Stakeholder Consensus Recommendations for the Opioid Use Case.

With the advent of interoperability standards such as FHIR, SMART, CDS Hooks, and CQL, interoperable clinical decision support (CDS) holds great promise for improving healthcare. In 2018, the Agency for Healthcare Research and Quality (AHRQ)-sponsored Patient-Centered CDS Learning Network (PCCDS LN) chartered a Technical Framework Working Group (TechFWG) to identify barriers, facilitators, and potential solutions for interoperable CDS, with a specific focus on addressing the opioid epidemic. Through an open, multi-stakeholder process that engaged 54 representatives from healthcare, industry, and academia, the TechFWG identified barriers in 6 categories: regulatory environment, data integration, scalability, business case, effective and useful CDS, and care planning and coordination. Facilitators and key recommendations were also identified for overcoming these barriers. The key insights were also extrapolated to CDS-facilitated care improvement outside of the specific opioid use case. If applied broadly, the recommendations should help advance the availability and impact of interoperable CDS delivered at scale.

Subcutaneous levetiracetam for the management of seizures at the end of life.

OBJECTIVES: To report the results of a combined case series analysis of subcutaneous levetiracetam (Keppra) for the management of seizures in palliative care patients. METHODS: A comprehensive literature review on the use of subcutaneous levetiracetam was performed, and these data were combined with a prospective observational audit of its use in terminal care undertaken in a regional palliative care network. RESULTS: 7 papers were identified from the literature review-four case reports and three observational case series-reporting on a total of 53 cases where subcutaneous levetiracetam was administered.We report 20 further cases of subcutaneous levetiracetam administration from a prospective observational audit. Doses ranged from 250mg to 4000 mg daily. Oral to subcutaneous conversion ratios where stated were 1:1. Levetiracetam was reported as the sole administered antiepileptic drug (AED) in eight cases, and no seizures were reported until death in five cases. Five were switched back to enteral levetiracetam. In seven cases, levetiracetam was combined with AEDs to provide seizure control at the end of life. There was one report of a sterile abscess after 25 days of continuous subcutaneous administration. CONCLUSIONS: Combined analysis of 73 reported cases of subcutaneous levetiracetam suggests this treatment may have a role in the management of seizures at the end of life. However, randomised controlled trials are urgently needed to establish the efficacy and tolerability of subcutaneous levetiracetam administration. If proven to be safe and effective, subcutaneous levetiracetam offers the potential to prevent and treat seizures without causing unnecessary sedation at the end of life.

Sticks and stones: investigating rude, dismissive and aggressive communication between doctors.

Destructive communication is a problem within the NHS; however previous research has focused on bullying. Rude, dismissive and aggressive (RDA) communication between doctors is a more widespread problem and underinvestigated. We conducted a mixed method study combining a survey and focus groups to describe the extent of RDA communication between doctors, its context and subsequent impact. In total, 606 doctors were surveyed across three teaching hospitals in England. Two structured focus groups were held with doctors at one teaching hospital. 31% of doctors described being subject to RDA communication multiple times per week or more often, with junior and registrar doctors affected twice as often as consultants. Rudeness was more commonly experienced from specific specialties: radiology, general surgery, neurosurgery and cardiology. 40% of respondents described that RDA moderately or severely affected their working day. The context for RDA communication was described in five themes: workload, lack of support, patient safety, hierarchy and culture. Impact of RDA communication was described as personal, including emotional distress and substance abuse, and professional, including demotivation. RDA communication between doctors is a widespread and damaging behaviour, occurring in contexts common in healthcare. Recognition of the impact on doctors and potentially patients is key to change.

Teaching referral skills to medical students.

BACKGROUND: Referrals are an important and frequent part of a junior doctor's work. Difficulty with making successful referrals is also very common. Despite this, training in referral skills is not routinely carried out in medical schools. RESULTS: We designed and delivered a 1-h interactive lecture to final year medical students to teach referral skills. The lecture was delivered on six occasions to up to 70 students at each session. 191 students attended and provided evaluation. 68% of students had no previous training in referral skills and 99% felt that referral skills should be included in the undergraduate curriculum. 90% reported that the lecture had improved their understanding of referral techniques and 83 and 80% felt that the lecture had improved their ability and confidence, respectively. CONCLUSIONS: Referral skills can be successfully taught in a large group lecture setting. We recommend that the teaching of referral skills is incorporated into all medical schools' curricula.

Do patients die well in your emergency department?

OBJECTIVES: Although the role of the ED in the management of patients needing palliative care is recognised internationally, there are little Australasian data on this issue. This study aimed to determine the current knowledge and attitude to the provision of palliative care in Australasian EDs. METHODS: All ED directors in Australasia were invited to complete an online survey about the provision of palliative care in their department. Quantitative data were described using counts and proportions, and qualitative data were summarised thematically. RESULTS: Of 165 eligible ED directors, 35 completed the survey (22%; 95% CI, 15-28%). Only 17/35 (49%; 95% CI, 32-65%) believed that ED provided good palliative care, and 28/35 (80%; 95% CI, 67-93%) were unaware of international gold standard palliative care protocols. Most had access to hospital-based palliative care specialists 27/35 (77%; 95% CI, 63-91%); however, only 5/27 (19%; 95% CI, 4-33%) used them. Few EDs undertake formal training in palliative care 10/35 (29%; 95% CI, 16-45%). Respondents showed concern about the quality of palliative care they provide and advocated for more palliative care training. CONCLUSION: Although limited by the low response rate, this survey indicates that there is a need and a desire for greater integration of the values and standards of high-quality palliative care in Australasian EDs.

Expanding the diversity of mycobacteriophages: insights into genome architecture and evolution.

Mycobacteriophages are viruses that infect mycobacterial hosts such as Mycobacterium smegmatis and Mycobacterium tuberculosis. All mycobacteriophages characterized to date are dsDNA tailed phages, and have either siphoviral or myoviral morphotypes. However, their genetic diversity is considerable, and although sixty-two genomes have been sequenced and comparatively analyzed, these likely represent only a small portion of the diversity of the mycobacteriophage population at large. Here we report the isolation, sequencing and comparative genomic analysis of 18 new mycobacteriophages isolated from geographically distinct locations within the United States. Although no clear correlation between location and genome type can be discerned, these genomes expand our knowledge of mycobacteriophage diversity and enhance our understanding of the roles of mobile elements in viral evolution. Expansion of the number of mycobacteriophages grouped within Cluster A provides insights into the basis of immune specificity in these temperate phages, and we also describe a novel example of apparent immunity theft. The isolation and genomic analysis of bacteriophages by freshman college students provides an example of an authentic research experience for novice scientists.

Vitiligo following a combined liver-kidney transplant.

We report an Afro-Caribbean male who developed vitiligo 10 days following a combined liver-kidney transplant from a Caucasian donor. Neither the donor nor the recipient had any previous history of vitiligo, nor of autoimmunity. The depigmentation gradually resolved by 8 weeks post-transplant with topical corticosteroids and standard maintenance immunosuppression. We propose that the skin depigmentation occurred due to the destruction of melanocytes by donor-derived alloreactive cytotoxic T-lymphocytes or antibody transferred during transplantation. Although vitiligo has been described in patients receiving allogeneic bone marrow transplantation for haematological malignancy, there are no previous reports of vitiligo post-solid organ transplantation.

Evaluation of reported medication errors before and after implementation of computerized practitioner order entry.

While a major objective of CPOE is to reduce medication errors, its introduction is a major system change that may result in unintended outcomes. Monitoring voluntarily-reported medication errors in a university setting was used to identify the impact of initial CPOE implementation on medical-surgical and intensive care units. A retrospective trend analysis was used to compare errors one year before and six months after implementation. Total error reports increased post-CPOE but the level of patient harm related to those errors decreased. Numerous modifications were made to the system and the implementation process. The study supports the notion that CPOE configuration and implementation influences the risk of medication errors. Implementation teams should incorporate monitoring medication errors into project plans and expect to make ongoing changes to continually support the design of a safer care delivery environment.

Exploring the impact of health information technology on communication and collaboration in acute care nursing.

A focus group using nursing informatics experts as informants was conducted to guide development of a survey to explore the impact of health information technology on the role of nurses and interdisciplinary communication in acute care settings. Through analysis of focus group transcripts, five key themes emerged: information, communication, care coordination, interdisciplinary relationships, workflow, and practice effectiveness and efficiency. This served as the basis for development of a survey that will investigate perceptions of acute care providers across the United States regarding the impact of health information technology on the role of nurses and interdisciplinar communication in acute care settings. The purpose of this paper is to describe the process of survey development including analysis of transcripts, emergence of key themes, and the processes by which the themes will be employed to inform survey development.