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Background: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited., Aim: To explore what works best to promote family carers' experiences of hospice-at-home., Design: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members., Setting/participants: Interviews with carers (involved daily) of patients admitted to hospice-at-home services ( n  = 58) and hospice-at-home staff ( n  = 78)., Results: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient-carer dyad., Conclusions: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having 'time to care', communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness., Aim: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples., Design: Semi-structured in-depth qualitative interviews analysed using thematic analysis., Setting/participants: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3)., Results: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness., Conclusion: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.

Background: A proportion of newly qualified doctors report feeling unprepared to manage patients with palliative care and end-of-life needs. This may be related to barriers within their institution during undergraduate training. Information is limited regarding the current organisation of palliative care teaching across UK medical schools., Aims: To investigate the evolution and structure of palliative care teaching at UK medical schools., Design: Anonymised, web-based questionnaire. Settings/participants: Results were obtained from palliative care course organisers at all 30 UK medical schools., Results: The palliative care course was established through active planning (13/30, 43%), ad hoc development (10, 33%) or combination of approaches (7, 23%). The place of palliative care teaching within the curriculum varied. A student-selected palliative care component was offered by 29/30 (97%). All medical schools sought student feedback. The course was reviewed in 26/30 (87%) but not in 4. Similarly, a course organiser was responsible for the palliative care programme in 26/30 but not in 4. A total of 22 respondents spent a mean of 3.9 h (median 2.5)/week in supporting/delivering palliative care education (<1-16 h). In all, 17/29 (59%) had attended a teaching course or shared duties with a colleague who had done so. Course organisers received titular recognition in 18/27 (67%; no title 9 (33%); unknown 3 (11%)). An academic department of Palliative Medicine existed in 12/30 (40%) medical schools. Funding was not universally transparent. Palliative care teaching was associated with some form of funding in 20/30 (66%)., Conclusion: Development, organisation, course evaluation and funding for palliative care teaching at UK medical schools are variable. This may have implications for delivery of effective palliative care education for medical students.

Background: Effective undergraduate education is required to enable newly qualified doctors to safely care for patients with palliative care and end-of-life needs. The status of palliative care teaching for UK medical students is unknown., Aim: To investigate palliative care training at UK medical schools and compare with data collected in 2000., Design: An anonymised, web-based multifactorial questionnaire., Settings/participants: Results were obtained from palliative care course organisers at all 30 medical schools in 2013 and compared with 23 medical schools (24 programmes) in 2000., Results: All continue to deliver mandatory teaching on 'last days of life, death and bereavement'. Time devoted to palliative care teaching time varied (2000: 6-100 h, mean 20 h; 2013: 7-98 h, mean 36 h, median 25 h). Current palliative care teaching is more integrated. There was little change in core topics and teaching methods. New features include 'involvement in clinical areas', participation of patient and carers and attendance at multidisciplinary team meetings. Hospice visits are offered (22/24 (92%) vs 27/30 (90%)) although they do not always involve patient contact. There has been an increase in students' assessments (2000: 6/24, 25% vs 2013: 25/30, 83%) using a mixture of formative and summative methods. Some course organisers lack an overview of what is delivered locally., Conclusion: Undergraduate palliative care training continues to evolve with greater integration, increased teaching, new delivery methods and wider assessment. There is a trend towards increased patient contact and clinical involvement. A minority of medical schools offer limited teaching and patient contact which could impact on the delivery of safe palliative care by newly qualified doctors., (© The Author(s) 2016.)

Background: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers' outcomes is a common problem., Aim: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures' psychometric properties., Design: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure., Data Sources: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts., Results: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care., Conclusion: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required., (© The Author(s) 2015.)

Background: Chronic cough is a disruptive and exhausting symptom, reported as very distressing in a quarter of those in their last year of life. Existing guidelines for management of chronic cough primarily deal with the commonest benign causes of cough: asthma; eosinophilic bronchitis; gastro-oesophageal reflux disease; rhinosinusitis., Aim/design: to examine what literature evidence exists and formulate recommendations for managing chronic cough in patients with advanced, progressive, life-limiting illnesses., Data Sources: Electronic databases (MEDLINE, EMBASE, CINAHL, Cochrane Library, Google Scholar); hand-search; grey literature., Results: Of 11 initially eligible studies, 5 provided evidence at level 2 or better. The small size of these studies, heterogeneity of study population and diversity of interventions and outcome measures used meant that comparison across studies and compilation of guidelines based on high-quality evidence was not possible. Pragmatic recommendations based on available evidence were formulated, drawing on the included studies and, in addition, extrapolating from two other well-designed studies involving patients with chronic cough. They also took into consideration convenience, toxicity and minimizing burden and harm of intervention, as well as considering the potential for disease-directed treatment and the possibility of pharmacological and co-existing benign causes of chronic cough., Conclusions: These recommendations (Grade D) include simple linctus, therapeutic trial of sodium cromoglycate and then prescription of an opioid or opioid derivative (dextromethorphan, morphine or codeine). Further research is clearly and urgently required in this area for more effective approaches to managing cough, tested in trials that have sufficient size, power and validity.

The management of 'death rattle' was reviewed by a task group on behalf of the Association for Palliative Medicine's Science Committee. Evidence was searched for the effectiveness of various anti-muscarinic drugs in drying oropharyngeal and bronchial secretions in dying patients. Clinical guidelines were constructed based on evidence from volunteer and clinical studies. Death rattle occurs in half of all dying patients and some response occurs in around 80% of treated patients. Clinical studies demonstrate that subcutaneous hyoscine hydrobromide 400 microg is more effective at improving symptoms at 30 min than glycopyrronium 200 microg by the same route. Volunteer studies demonstrate that intramuscular glycopyrronium 400 microg is as effective in drying secretions at 30 min as a dose of 200 microg given intravenously. Duration of response is shortest for hyoscine butylbromide (1 h) and longest for glycopyrronium (more than 6 h). There is insufficient evidence to support the use of one drug over another in a continuous infusion and prescribers should base decisions on different characteristics of each anti-muscarinic drug.