End-of-life care for non-cancer patients

[Extract]: The origins and early development of palliative care focussed on patients with cancer, apart from sporadic developments in a few non-malignant diseases such as MND and HIV. In the UK, this has been compounded by the setting of palliative care outside the National Health Service, principally funded by cancer-related charities who, at the time were instituted to relieve the suffering associated with cancer. When the modern hospice movement began, the course of malignant disease was seen as more predictable, with a defined palliative phase when anti-cancer treatments were no longer indicated. In the UK and many areas of the world where it was first adopted such as the Canada, USA, mainland Europe and Australia, this led to the traditional model of palliative care services, involved only in people with a prognosis of a few weeks or months. As a result, services have focused primarily on cancer leading to service and symptom management inequalities for equally needy patients with non-malignant diseases

One evidence base; three stories: do opioids relieve chronic breathlessness?

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/. The efficacy of low-dose systemic opioids for chronic breathlessness was questioned by the recent Cochrane review by Barnes et al We examined the reasons for this conflicting finding and re-evaluated the efficacy of systemic opioids. Compared with previous meta-analyses, Barnes et al reported a smaller effect and lower precision, but did not account for matched data of crossover trials (11/12 included trials) and added a risk-of-bias criterion (sample size). When re-analysed to account for crossover data, opioids decreased breathlessness (standardised mean differences -0.32; -0.18 to -0.47; I2=44.8%) representing a clinically meaningful reduction of 0.8 points (0-10 numerical rating scale), consistent across meta-analyses

The Cross-platform Social Engagement of Students

With social media being a ubiquitous part of the way students engage with each other, this study explores how media, journalism, and publishing students use social media both in and outwith the classroom. It focuses on how cohorts use social media during class times – how they are speaking to each other and scrolling social feeds – and how they communicate about course related content after class. This research highlights the obligation that some students feel to answer questions that come into the group social channels, while linking that obligation to a sense of reciprocity. It shows how these issues are embedded it in the value exchange of emotional labour and its relationship to gender. Not all students feel obligated to take part and many indicate levels of frustration at the stream of questions, which can, in turn, exacerbate negative mental health issues in students

What is a book? : Redefining the book in the digitally social age

This article focuses on what is meant by the term ‘book’. Here, there is a consideration of how the definition of the book has altered over time as technology has improved and as writers themselves began to have different relationships to the book and industry. It further explores the ways the book itself has altered in format, from printed to digital, with audio editions, and socially in relation to the rise of social media and a new form of author who chooses to write and share their works directly within social platforms. In this context, book must be redefined to incorporate the context of new social technology

Improving the quality of life of people with advanced respiratory disease and severe breathlessness

Advanced respiratory disease imposes a greater symptom burden than many cancers but not does have comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with advanced respiratory disease (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and are often financially impoverished. The past decade has seen an increasing realisation that care for this group must improve and that symptom management must be prioritised. Clinical guidelines recommend person-centred care, including access to supportive and palliative care as needed, as part of standard medical practice. Advanced lung disease clinics and specialist breathlessness services (pioneered within palliative care) are developing within respiratory medicine services but are provided inconsistently. This review covers the comprehensive assessment of the patient with advanced respiratory disease, the importance of supporting carers and the current best practice in the management of breathlessness, fatigue and cough. It also suggests ways to incorporate person-centred care into the general respiratory clinic, assisted by better liaison with specialist palliative and primary care. Emerging evidence shows that excellent symptom management leads to better clinical outcomes and reduces inappropriate use of emergency medical services

Deactivation of implantable defibrillators at the end of life- A register-based study of ICD-deactivation at home and the impact of Palliative Care

AbstractBackground: The Implantable Cardioverter-Defibrillator (ICD) is a well-established life-saving therapy for heart failure patients, but due to the risk for unnecessary shocks, deactivation of ICD:s is recommended at the end of life.We aimed to identify i) how many people with HF and an ICD who died in Sweden in 2018 received Specialized Palliative Care (SPC), ii) of those dying outside of hospital, the proportion with deactivated ICDs prior to death for the group as a whole and by SPC access.Methods and results: We analyzed data from i) the Swedish ICD and Pacemaker Registry to find all who died with an ICD in Sweden in 2018, ii) the Swedish Register of Palliative Care and, iii) the Swedish Causes of Death Certificate Register to find those who died outside of hospital. Clinical records were obtained to assess if ICDs were deactivated before death. Descriptive statistics, t-tests and chi-squared tests were applied.46/406 (11%) of those who died with an ICD in Sweden in 2018 had SPC access, of whom 50% also had cancer. 86/164 (52%) ICDs were deactivated prior to death in people dying outside of hospital; higher in those accessing SPC (36/46, (78%) SPC access versus 151/360, (42%) no SPC access; p<0.05).Conclusions: Half of those with HF and an ICD dying outside of hospital had ICD deactivation prior to death. Those accessing SPC were more likely to have their ICD deactivated but few received SPC, without a comorbid cancer diagnosis

Breathlessness in the emergency care setting

AbstractPurpose of reviewBreathlessness is one of the most common reasons for presentation at the emergency department (ED). The present review summarizes work published from 2017, which focuses on the symptom of breathlessness in its own right rather than as a signpost to diagnosis in relation to presentation to the ED.Recent findingsSeven relevant papers are included in the present review. Five describe the epidemiology of breathlessness presentation showing: a prevalence of approximately 5% all ED presentations, a high likelihood of hospital admission especially for those with heart failure, breathlessness as a predictor of re-presentation. A sixth study described self-management strategies for breathlessness crises used by expert patients in successfully avoiding presentations to the ED. The seventh study reported the validation of the shorter dyspnea severity scale for use in the ED using a mixture of symptom report and clinical observation measures.SummaryBreathlessness is a common presenting feature in the ED and carries clinical outcome significance irrespective of the causative disease. Routine enquiry is needed to identify, assess, and manage breathlessness alongside interventions to stabilize underlying reversible pathologies. Presentation to the ED because of breathlessness should trigger community-based, supported self-management for future episodes of breathlessness crises

Does the use of specialist palliative care services modify the effect of socioeconomic status on place of death? A systematic review

© SAGE Publications. Background: Cancer patients in lower socioeconomic groups are significantly less likely to die at home and experience more barriers to access to palliative care. It is unclear whether receiving palliative care may mediate the effect of socioeconomic status on place of death. Aim: This review examines whether and how use of specialist palliative care may modify the effect of socioeconomic status on place of death. Design: A systematic review was conducted. Eligible papers were selected and the quality appraised by two independent reviewers. Data were synthesised using a narrative approach. Data sources: MEDLINE, Embase, CINAHL, PsycINFO and Web of Knowledge were searched (1997-2013). Bibliographies were scanned and experts contacted. Papers were included if they reported the effect of both socioeconomic status and use of specialist palliative care on place of death for adult cancer patients. Results: Nine studies were included. All study subjects had received specialist palliative care. With regard to place of death, socioeconomic status was found to have (1) no effect in seven studies and (2) an effect in one study. Furthermore, one study found that the effect of socioeconomic status on place of death was only significant when patients received standard specialist palliative care. When patients received more intense care adapted to their needs, the effect of socioeconomic status on place of death was no longer seen. Conclusion: There is some evidence to suggest that use of specialist palliative care may modify the effect of socioeconomic status on place of death

The independent association of overweight and obesity with breathlessness in adults: a cross-sectional, population-based study

Obesity is an independent risk factor for chronic breathlessness and should be assessed in people with this symptom

Clinically important differences in the intensity of chronic refractory breathlessness

Context: Clinically important differences in chronic refractory breathlessness are ill defined but important in clinical practice and trial design. Objectives: To estimate the clinical relevance of differences in breathlessness intensity using distribution and patient anchor methods. Methods: This was a retrospective data analysis from 213 datasets from four clinical trials for refractory breathlessness. Linear regression was used to explore the relationship between study effect size and change in breathlessness score (0-100 mm visual analogue scale) and to estimate the change in score equivalent to small, moderate, and large effect sizes. Pooled individual blinded patient preference data from three randomized controlled trials were analyzed. The difference between the mean change in Day 4 minus baseline scores between preferred and non-preferred arms was calculated. Results: There was a strong relationship between change in score and effect size (P = 0.001; R 2 = 0.98). Values for small, moderate, and large effects were -5.5, -11.3, and -18.2 mm. The participant preference change in score was -9 mm (95% CI, -15.8, -2.1) (P = 0.008). Conclusion: This larger dataset supports a clinically important difference of 10 mm. Studies should be powered to detect this difference