End of life care definitions and triggers for assessment: a summary and discussion of the literature

This report was commissioned by the NHS National Programme Director for End of Life Care in 2008 to inform the development of national policy regarding end of life care prior to the controversy surrounding misuse of the Liverpool Care Pathway (Ellershaw and Wilkinson, 2003) and its subsequent discontinuation from use in clinical practice. It was situated on the Department of Health’s webpages for end of life care until taken down following internal reorganisation of the website and the redistribution of responsibility for end of life care within the National Health Service some years later. The subject of end of life prognostication was as sensitive then as it is now however, although in many respects, it is much more visible as a subject for social, political and academic debate these days, not least because of the many examples contained within subsequent reviews of the Liverpool Care Pathway’s misuse by clinicians or practitioners who failed in some instances to fully understand the importance of ‘diagnosing dying’ before putting individuals onto the care pathway, and their failure to heed the very first rule of its use, namely; that such decisions should always be discussed with those who were dying and their close family members before putting them on the pathway wherever possible. The majority of clinical interventions contained within the Liverpool Care Pathway for the Dying were, and continue to be clinically sound when used appropriately; although the evidence base for some of them remains sparse though it is an area of practice which continues to be under-researched even to this day. The main problem outlined in the wake of the Liverpool Care Pathway controversy lay in the inability of clinicians to prognosticate accurately which, when combined with a natural aversion to having difficult conversations with patients and family members, and the lack of investment or interest in palliative and end of life education led to inevitable mistakes occurring. I still recall the evident satisfaction of one manager who called to explain why she was withdrawing her staff from an end of life programme I was running because the ‘LCP’ was being introduced into her areas and she thought that was all that was needed to provide good end of life care. We clearly know better now. The review undertaken was neither funded nor intended to be a comprehensive systematic review of the literature, but rather a twenty-page summary and starting point for discussion about the way in which we recognise that someone is dying and how we could or should respond to that fact. The need for discussion is as pertinent today as it was then, not least because of the fact that more patients and family members expect us to have answers to these questions, though clearly this is still a work in progress for many of us and will continue to be until we fully understand the benefits of having such conversations with them

The social construction of good and bad deaths in hospice settings: a multiple embedded case-study

The activities that health-care professionals perform for the dying on a daily basis contribute in important ways to the experience of death, both for the patient, and those who care for them. Little is known however about the criteria that health-care professionals use when delineating a death as ‘good’ or ‘bad’. The case-study described identifies some of the criteria that health-care professionals working in one South London hospice used when evaluating the quality of deaths occurring in that unit, and demonstrates that hospice workers use a complex system of values when delineating a death as good or bad. Consistent views about the presence or absence of physical symptoms were found, but there was less agreement about the importance of criteria such as spiritual preparedness or acceptance of death. Control and autonomy also featured highly in descriptions of a good death, but these were regarded as problematic when exercised ‘to excess’ by clients and their families, a position at variance with traditional hospice philosophy. Similarly, there was little construct permanence between hypothetical and literal cases of a ‘good’ and ‘bad’ death, which suggests that the criteria which some hospice workers’ use are more subjective than the literature suggests

Publishing your work: an editor’s perspective

This keynote presentation, delivered to the 15th European Doctoral Conference in Nursing Science at the Medical University of Graz, Austria on the 19th of September 2015 outlines ways in which European doctoral nursing candidates can improve the publication chances of their manuscripts drawing on published literature and the author's experience as editor and associate editor for 2 international peer reviewed journals

Understanding factors behind the late testing and diagnoses of HIV: a review of the international literature

Late diagnosis of HIV results in increased morbidity and mortality and raises the potential for onward transmission to others. It also increases costs to health service providers and impacts on national health budgets. This paper reports results from a literature review conducted to inform the conduct of an international study investigating barriers to early HIV testing from the perspectives of both patients and healthcare professionals. The literature suggests that reasons for late presentation include demographic factors such as age, sex and ethnicity; fear and stigma associated with an HIV diagnosis; and individual risk appraisal, as well as structural and organisational barriers within the healthcare system. Other key issues highlighted by the literature review include the fact that: the number of people living with HIV is increasing year on year, the proportion of people presenting with a late HIV diagnosis is increasing not only in MSMs but also in other less recognised groups such as heterosexual women and in particular, older heterosexual men and women. Reasons for late presentation and diagnosis are multifactorial, but further research into the issue of late presentation and diagnosis of HIV is required, including the exploration of reasons why people continue to present late. The review indicated that further work to raise public awareness of the benefits of early testing, together with improved education and training for healthcare professionals is vital to improve the uptake and timeliness of HIV testing

From Group Recommendations to Group Formation

There has been significant recent interest in the area of group recommendations, where, given groups of users of a recommender system, one wants to recommend top-k items to a group that maximize the satisfaction of the group members, according to a chosen semantics of group satisfaction. Examples semantics of satisfaction of a recommended itemset to a group include the so-called least misery (LM) and aggregate voting (AV). We consider the complementary problem of how to form groups such that the users in the formed groups are most satisfied with the suggested top-k recommendations. We assume that the recommendations will be generated according to one of the two group recommendation semantics - LM or AV. Rather than assuming groups are given, or rely on ad hoc group formation dynamics, our framework allows a strategic approach for forming groups of users in order to maximize satisfaction. We show that the problem is NP-hard to solve optimally under both semantics. Furthermore, we develop two efficient algorithms for group formation under LM and show that they achieve bounded absolute error. We develop efficient heuristic algorithms for group formation under AV. We validate our results and demonstrate the scalability and effectiveness of our group formation algorithms on two large real data sets.Comment: 14 pages, 22 figure

Report on the West Kent Clinical Commissioning Group's 'Six Steps End-of-Life Care Programme'

This report outlines the evaluation data of a commission by West Kent Clinical Commissioning Group (CCG) to deliver the national 'Six Steps' end-of-life care programme to staff in a number of long-term care facilities in the Maidstone Area in 2013

Reviewing challenges and gaps in European and global dementia policy

Purpose: The aim of this review is to scope out European and global policy documents focused on dementia with the purpose of providing a synthesis of the challenges the phenomenon poses and the gaps evident. Design: An adapted PESTEL framework as a data extraction tool resulted in an analysis of the political, economic, social, technological, environmental, organisational, educational, and research aspects of dementia policy. Findings: Policy documents showed variability of dementia strategy, plan, and programme development. All documents recognised rapidly growing ageing populations, and increasing numbers of people living with dementia. Dementia as a public health priority is inconsistent in growth. Global policy documents stress the impact of dementia will be felt most by low-and-middle income countries. Main themes were: a need to raise awareness of dementia and action to reduce stigma around it, the need for early diagnosis and preventative person-centred approaches with integrated care, fiscal investment, further research, training and education for workforces, increased involvement of and support for people living with dementia, and care and support close to home. Social and Practical Implications: By identifying current dementia challenges and policy gap implications this analysis urges engagement with broader frames of reference as potential for enabling bolder and radically better dementia care models. Originality: This paper offers a review of present global and European dementia policy, outlining the potential implications for the most marginalised in society if it fails to be critical of its own underpinning assumptions

Monte Carlo Neutrino Transport Through Remnant Disks from Neutron Star Mergers

We present Sedonu, a new open source, steady-state, special relativistic Monte Carlo (MC) neutrino transport code, available at bitbucket.org/srichers/sedonu. The code calculates the energy- and angle-dependent neutrino distribution function on fluid backgrounds of any number of spatial dimensions, calculates the rates of change of fluid internal energy and electron fraction, and solves for the equilibrium fluid temperature and electron fraction. We apply this method to snapshots from two-dimensional simulations of accretion disks left behind by binary neutron star mergers, varying the input physics and comparing to the results obtained with a leakage scheme for the case of a central black hole and a central hypermassive neutron star. Neutrinos are guided away from the densest regions of the disk and escape preferentially around 45 degrees from the equatorial plane. Neutrino heating is strengthened by MC transport a few scale heights above the disk midplane near the innermost stable circular orbit, potentially leading to a stronger neutrino-driven wind. Neutrino cooling in the dense midplane of the disk is stronger when using MC transport, leading to a globally higher cooling rate by a factor of a few and a larger leptonization rate by an order of magnitude. We calculate neutrino pair annihilation rates and estimate that an energy of 2.8e46 erg is deposited within 45 degrees of the symmetry axis over 300 ms when a central BH is present. Similarly, 1.9e48 erg is deposited over 3 s when an HMNS sits at the center, but neither estimate is likely to be sufficient to drive a GRB jet.Comment: 23 pages, 16 figures, Accepted to The Astrophysical Journa

P131: Understanding factors behind the late testing and diagnosis of HIV: UK results from the IMPRESS Health 2 study.

Background: Over 100,000 have HIV in the UK. However, while effective treatment exists, there is neither a cure nor a preventative vaccine, so >500 people die from AIDS every year with many others dying undiagnosed. Health policy focuses on prevention and support, but it is necessary to increase the number of early diagnoses and reduce the rate of spread (Public Health England, 2014). Approximately 25% of HIV positive individuals do not know their status however, and almost half of all UK diagnoses occur late. It is vital therefore, to understand and address barriers to early testing and diagnosis to address this trend. Methods: Clinical data for 240 patients diagnosed with HIV in 3 trusts in Kent and Medway over 5 years were analysed in relation to clinical, social, demographic and psychosexual factors likely to affect knowledge of HIV and their decision to seek a test. Fifty-three semi-structured interviews were also conducted with patients and healthcare professionals to elicit experience and perceptions about barriers to testing and ways to increase uptake. Results: Patients were aged 19-81 years (mean 40 years) and 67.5% were men. Women were more likely to be diagnosed late however (67.9% versus 56.8%), and late diagnosis was higher than the national average for both sexes (60.4%) with the highest rates in Medway (66.1%) and Maidstone and Tunbridge Wells (64.6%). Patients diagnosed late were 4 years older than those diagnosed early; and late diagnoses was higher in ethnic minority groups (70.2%) compared to white British (53.0%). Those born outside the UK were also generally diagnosed later (69.8%). The most frequent categories affected were heterosexuals (56.2%), men who have sex with men (36.6%) and intravenous drug users (2.0%). Patients diagnosed during an acute hospital admission were far more likely to be diagnosed late (89.1%) compared to other settings (49.6 - 57.1%). Qualitative data suggested that outmoded notions of HIV as a ‘gay disease’ still prevailed and heterosexuals did not generally consider themselves to be at risk. Healthcare professionals sometimes failed to acknowledge risks in ‘non-traditional’ groups and often overlooked HIV as a likely cause of symptoms until patients were seriously unwell. Conclusion: Clearer public health messages should be targeted at the general population and there is a need to better educate professionals, especially GPs, about the clinical indicators of HIV which also need to be de-stigmatised

Origins of choice-related activity in mouse somatosensory cortex.

During perceptual decisions about faint or ambiguous sensory stimuli, even identical stimuli can produce different choices. Spike trains from sensory cortex neurons can predict trial-to-trial variability in choice. Choice-related spiking is widely studied as a way to link cortical activity to perception, but its origins remain unclear. Using imaging and electrophysiology, we found that mouse primary somatosensory cortex neurons showed robust choice-related activity during a tactile detection task. Spike trains from primary mechanoreceptive neurons did not predict choices about identical stimuli. Spike trains from thalamic relay neurons showed highly transient, weak choice-related activity. Intracellular recordings in cortex revealed a prolonged choice-related depolarization in most neurons that was not accounted for by feed-forward thalamic input. Top-down axons projecting from secondary to primary somatosensory cortex signaled choice. An intracellular measure of stimulus sensitivity determined which neurons converted choice-related depolarization into spiking. Our results reveal how choice-related spiking emerges across neural circuits and within single neurons