End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives.

BACKGROUND: Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families. METHODS: A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life. RESULTS: Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to "live for the day" due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in 'selective decision-making' related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make 'timely decisions' as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often 'defaulted' to others, especially once capacity was lost. 'Proactive decisions', including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options. CONCLUSIONS: The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

Organisational values of National Health Service trusts in England: semantic analysis and relation to performance indicators.

BACKGROUND: Organisational values are widely assumed to have positive effects on performance and staff. National Health Service (NHS) trusts in England have accordingly chosen their own organisational values. However, there has been no survey of the values adopted, and there is little evidence that the choice of values per se has consequences for outcomes. We comprehensively described trusts' organisational values, using natural language processing to identify common themes. We tested whether the choice of themes was associated with outcomes for patients and staff. METHODS: We collected data on trusts' values (from their websites), performance (Summary Hospital-level Mortality Indicator (SHMI) statistics, Care Quality Commission (CQC) ratings), sickness absence rates (SAR) and staff opinions (NHS Staff Survey responses). We first characterised values based on lexical properties then progressed to semantic analysis, using Google's Universal Sentence Encoder, to transform values to high-dimensional embeddings, and k-means clustering of embeddings to semantically cluster values into 12 common themes. We tested for associations between trusts' use of these themes and outcomes. RESULTS: Organisational values were obtained for 221 of 228 NHS trusts, with 985 values in total (480 unique). Semantic clustering identified themes including 'care', 'value respect' and 'togetherness'. There was no significant association between themes and SHMI or CQC ratings. However, themes predicted trusts' SAR (p=0.001, R2=0.159), with use of 'care', 'value respect', 'aspirational' and 'people' all significant predictors of increased sickness absence; themes also predicted staff opinions on 'Equality, diversity and inclusion' (p=0.011, R2=0.116), but with 'supportive' and 'openness' predicting more negative responses. CONCLUSION: A trust's adoption of individualised organisational values does not seem to make a positive difference to its patients or staff. These findings should give NHS managers pause for thought, challenging them to reconsider their reliance on value-defining initiatives, and to seek evidence that a focus on values has measurable benefits on outcomes.

Paramedics and serious illness: communication training.

OBJECTIVES: The need to empower Ambulance Service staff at the point of delivery of end of life care (EoLC) is crucial. We describe the delivery, outcomes and potential impact of the Serious Illness Conversation project delivered to Welsh Ambulance Service Trust (WAST) staff. Over an 18-month period, 368 WAST staff attended face-to-face teaching, which included serious illness conversation communication skills, symptom control and 'shared decision making'. METHOD: Data collected from WAST staff were used to gain insight on perception of their role and challenges within the context of EoLC, understand the impact of teaching on self-confidence and identify impact on the wider service. A mixed methods approach was used for data analysis. RESULTS: WAST staff view themselves in several important roles, acting as 'facilitators' to patient-centred, seamless care, providing support, liaison between services and practical help in patient care at the end of life. The difficult questions and situations pertaining to EoLC were related to discussions on death and dying and managing expectation. The predominant barriers identified related to communication. Quantitative outcomes on the six communication domains indicate statistically significant improvement in self-assessed confidence. The overall impact to the wider ambulance service suggests a trend towards better use of resources. CONCLUSION: The perceived roles and challenges identified by paramedics can help in customising training objectives. The initial outcomes from the ongoing project with WAST demonstrate increased confidence in handling communication issues. Initial successive surveys suggest teaching is making a real life impact on patient care at end of life.

Against the odds: unlikely COVID-19 recovery.

BACKGROUND: We present a 67-year-old male, with palliative hypopharyngeal squamous cell carcinoma, who contracted COVID-19 infection while in hospital. Cancer diagnosis, among other clinical features, increases the risk of poor outcome of COVID-19 infection. A recently validated risk calculator (COVID-GRAM) can help to guide prognosis. EVENTS: COVID-19 infection caused significant clinical deterioration in this patient. A Treatment Escalation Plan of ward-based care was put in place and the palliative care team involved. The goal of care was comfort. RESULTS: The patient improved clinically and retested negative for COVID-19. He was discharged to a nursing home for ongoing supportive care of his malignancy. DISCUSSION: The validated COVID-GRAM calculator predicted a greater than 99% risk that this patient would require intensive therapy unit admission or die. This patient overcame significant physiological challenges to survive COVID-19, highlighting the challenges of prognostication and suggesting that palliation of COVID-19 is not detrimental to survival.

Lung sounds: how doctors draw crackles and wheeze.

BACKGROUND: The content of medical records is a potential source of miscommunication between clinicians. Doctors' written entries have been criticised for their illegibility and ambiguity, but no studies have examined doctors' drawings that are commonly used for recording auscultation findings. OBJECTIVE: To compare doctors' drawings of auscultation findings, based on identical clinical information. METHODS: Doctors at the Royal London Hospital and a group of London based general practitioners (GPs) documented a respiratory examination with a drawing of the auscultation findings of bilateral mid and lower zone wheeze and right lower zone crackles. The graphical properties of each drawing were examined and the use of written captions and labels recorded. Drawings were classified into styles according to the use of symbols (defined as discrete characters or icons) and shading (cross-hatching, speckling or darkening) to depict the auscultation findings. The study was conducted between September and November 2011. RESULTS: Sixty-nine hospital doctors and 13 GPs participated. Ten drawing styles were identified from 78 completed drawings. Ten distinct symbols and a range of shading techniques were used. The most frequent style (21% of drawings) combined 'X' symbols representing crackles with musical notes for wheeze. There was inconsistency of representation across the drawings. Forty-seven (60%) drawings used an 'X' symbol exclusively to represent crackles, but six (8%) used 'X' only to represent wheeze, and 10 (13%) used 'X' to represent both findings. 91% of participants included captions or labels with their drawing. CONCLUSIONS: There was wide variation in doctors' drawings of identical auscultation findings, and inconsistency in the meaning of symbols both between and within drawings. Doctors risk incorrectly interpreting each other's drawings when they are not effectively labelled. We recommend doctors consider using a written description instead, or draw different findings with distinct symbols or shading, labelling all findings clearly.

ANGPTL4 E40K and T266M: effects on plasma triglyceride and HDL levels, postprandial responses, and CHD risk.

BACKGROUND: Angiopoietin-like 4 is a dual-function protein: an inhibitor of LPL, influencing plasma triglycerides (TGs), with angiogenic properties. We examined the association of common ANGPTL4 variants with CHD traits and risk in 5 studies (13,527 individuals). METHODS AND RESULTS: The effects on plasma lipids of 6 tagging SNPs and the recently identified E40K were examined in a study of 2772 men. Only T266M (rs1044250, MAF=30%) and E40K (MAF=2%) were significantly associated with TG-lowering (-10.4%, P<0.004 and -20.4%, P<0.0001), respectively. T266M no longer showed significant associations when K40 carriers (K40+) were excluded (P=0.2). Combining data from 5 studies confirmed the TG-lowering effect of K40+ (weighted mean difference: -0.12 [95% CI -0.18, -0.05] mmol/L TG P=0.0001). Surprisingly, in the 3 prospective studies, the combined OR for CHD was 1.48 (1.11 to 1.96, P=0.007), independent of TG. In individuals with a paternal history of MI (n=332) T266M, but not E40K, showed effects on postprandial AUC TG and glucose (P=0.009 and P=0.017, respectively) compared to controls (n=370). CONCLUSIONS: Although associated with an atheroprotective lipid profile, E40K was associated with increased CHD risk, suggesting Angptl4 influences parameters beyond lipid levels. T266M showed effects only under conditions of postprandial stress. The functionality of these potential "loss-of-function" variants needs validation.