Hastening death in end-of-life care: A survey of doctors

This is the post-print version of the final paper published in Social Science & Medicine. The published article is available from the link below. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. Copyright @ 2009 Elsevier B.V.The application of medical technology to prolong life at the expense of quality of life is widely debated in end-of-life care. A national survey of 3733 UK doctors reporting on the care of 2923 people who had died under their care is reported here. Results show that there was no time to make an 'end-of-life decision' (deciding to provide, withdraw or withhold treatment) for 8.5% of those reporting deaths. A further 55.2% reported decisions which they estimated would not hasten death and 28.9% reported decisions they had expected to hasten death. A further 7.4% reported deaths where they had to some degree intended to hasten death. Where patients or someone else had made a request for a hastened death, doctors were more likely to report expecting or at least partly intending to hasten death. Doctors usually made these decisions in consultation with colleagues, relatives and, where feasible, with patients. Intensive care specialists were particularly likely to report a degree of intention to hasten the end of life and to have treated patients lacking the capacity to discuss these decisions. Palliative medicine specialists were the least likely to report decisions they expected or at least partly intended to end life, in spite of reporting a high incidence of requests from their patients for a hastened death. Doctors with strong religious beliefs or who opposed the legalisation of assisted dying were unlikely to report such decisions. Elderly women and those with dementia are groups considered vulnerable in societies where a permissive approach is taken to hastening death in end-of-life care, but doctors describing these deaths were no more likely to report decisions which they expected or at least partly intended to end life. The survey suggests that concerns about the sanctity of life, as well as estimates of the quality of life, enter clinical decision-making. © 2009 Elsevier Ltd. All rights reserved.National Council for Palliative Care, Age Concern, the Motor Neurone Disease Association, the Multiple Sclerosis Society, Help the Hospices, Macmillan Cancer Support and Sue Ryder Care

The blue one takes a battering why do young adults with asthma overuse bronchodilator inhalers? A qualitative study

Objective: Overuse of short-acting bronchodilators is internationally recognised as a marker of poor asthma control, high healthcare use and increased risk of asthma death. Young adults with asthma commonly overuse short-acting bronchodilators. We sought to determine the reasons for overuse of bronchodilator inhalers in a sample of young adults with asthma. Design: Qualitative study using a purposive extreme case sample. Setting: A large urban UK general practice. Participants: Twenty-one adults with moderate asthma, aged 20-32 years. Twelve were high users of short-acting bronchodilators, nine were low users. Results: Asthma had a major impact on respondents' lives, disrupting their childhood, family life and career opportunities. High users of short-acting bronchodilators had adapted poorly to having asthma and expressed anger at the restrictions they experienced. Overuse made sense to them: shortacting bronchodilators were a rapid, effective, cheap 'quick-fix' for asthma symptoms. High users had poorer control of asthma and held explanatory models of asthma which emphasised short-term relief via bronchodilation over prevention. Both high and low users held strong views about having to pay for asthma medication, with costs cited as a reason for not purchasing anti-inflammatory inhalers. Conclusions: Young adults who were high users of short-acting bronchodilators had adapted poorly to having asthma and had poor asthma control. They gave coherent reasons for overuse. Strategies that might address high bronchodilator use in young adults include improving education to help young people accept and adapt to their illness, reducing stigmatisation and providing free asthma medication to encourage the use of anti-inflammatory inhalers

Recruiting ethnic minority participants to a clinical trial: a qualitative study

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non-commercial and is otherwise in compliance with the license.To compare the motives and experiences of different ethnic groups participating in a randomised double blind placebo-controlled trial of montelukast in preschool wheeze, and to assess parents' or guardians' understanding of trial procedures and their implications, including the collection of genetic material.National Institute of Health Research Efficacy and Mechanism Evaluation Stream(grant number: 08-43-03)

Medical students' perceptions in relation to ethnicity and gender: A qualitative study

Background The British medical student population has undergone rapid diversification over the last decades. This study focuses on medical students' views about their experiences in relation to ethnicity and gender during their undergraduate training within the context of the hidden curriculum in one British medical school as part of a wider qualitative research project into undergraduate medical education. Method We interviewed 36 undergraduate medical students in one British Medical School, across all five years of training using a semi-structured interview schedule. We selected them by random and quota sampling, stratified by sex and ethnicity and used the whole medical school population as a sampling frame. Data analyses involved the identification of common themes, reported by means of illustrative quotations and simple counts. Results The students provided information about variations patterned by gender in their motivation and influences when deciding to study medicine. Issues in relation to ethnicity were: gaining independence from parents, perceived limitations to career prospects, incompatibility of some religious beliefs with some medical practices and acquired open-mindedness towards students and patients from different ethnic backgrounds. Despite claiming no experiences of gender difference during medical training, female and male students expressed gender stereotypes, e.g. that women bring particularly caring and sympathetic attitudes to medicine, or that surgery requires the physical strength and competitiveness stereotypically associated with men that are likely to support the continuation of gender differentiation in medical careers. Conclusion The key themes identified in this paper in relation to ethnicity and to gender have important implications for medical educators and for those concerned with professional development. The results suggest a need to open up aspects of these relatively covert elements of student culture to scrutiny and debate and to take an explicitly wider view of the influence of what has sometimes been called the hidden curriculum upon the training of medical professionals and the practice of medicine

Anticipatory prescribing for end of life care in the community: a survey of community nurses in England

Anticipatory prescribing is increasingly common in the UK, yet little is known about nurses’ roles in the process. As part of a wider study to explore this, a postal survey of 575 community/district, nursing home and palliative care nurses was undertaken in two regions. Nurses report anticipatory prescriptions to be very common, and once in place they are normally used. Findings show that nurses report taking prominent roles throughout the anticipatory prescribing process and principal responsibility for administering and monitoring the medications. Many respondents recount good working relationships with GPs. However, some nurses report being challenged by: GPs who are reluctant to prescribe the medications, incorrectly written prescriptions, and difficulties in gaining access to the necessary medications. Qualitative comments indicated that being a nurse prescriber could enhance confidence to use anticipatory prescriptions. Importantly, nurses responding to the survey perceived that anticipatory prescriptions facilitated provision of good end of life care

Derived Demand for Food Nutrients as Welfare Indicator of Biofortified Crops: High-Iron Rice in the Philippines

The study estimates potential consumer gains from the introduction of High-Iron Rice in the Philippines. By deriving the demand for dietary iron from a national survey on household food consumption and expenditure, we project consumer welfare implications under both non-market and market analytical frameworks.Crop Production/Industries,

Continuous sedation until death: The everyday moral reasoning of physicians, nurses and family caregivers in the UK, The Netherlands and Belgium

Copyright © 2014 Raus et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited.Background - Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress. Methods - This study is an international qualitative interview study involving interviews with physicians, nurses, and relatives of deceased patients in the UK, The Netherlands and Belgium (the UNBIASED study) about a case of continuous sedation at the end of life they were recently involved in. All interviews were transcribed verbatim and analysed by staying close to the data using open coding. Next, codes were combined into larger themes and categories of codes resulting in a four point scheme that captured all of the data. Finally, our findings were compared with others and explored in relation to theories in ethics and sociology. Results - The participants’ responses can be captured as different dimensions of ‘closeness’, i.e. the degree to which one feels connected or ‘close’ to a certain decision or event. We distinguished four types of ‘closeness’, namely emotional, physical, decisional, and causal. Using these four dimensions of ‘closeness’ it became possible to describe how physicians, nurses, and relatives experience their involvement in cases of continuous sedation until death. More specifically, it shined a light on the everyday moral reasoning employed by care providers and relatives in the context of continuous sedation, and how this affected the emotional impact of being involved in sedation, as well as the perception of their own moral responsibility. Conclusion - Findings from this study demonstrate that various factors are reported to influence the degree of closeness to continuous sedation (and thus the extent to which carers feel morally responsible), and that some of these factors help care providers and relatives to distinguish continuous sedation from euthanasia.The Economic and Social Research Council (UK), the Research Foundation Flanders (BE), the Flemish Cancer Association (BE), the Research Council of Ghent University (BE), the Netherlands Organization for Scientific Research (NL) and the Netherlands Organization for Health Research and Development (NL)

Working with Amateur Labour: Between Culture and Economy

An introduction to the 'Amateur Economies' special issue of CSR 19.1, with an overview of the themes and articles within.</jats:p

News media coverage of euthanasia: A content analysis of Dutch national newspapers

© 2013 Rietjens et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0),which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Background: The Netherlands is one of the few countries where euthanasia is legal under strict conditions. This study investigates whether Dutch newspaper articles use the term ‘euthanasia’ according to the legal definition and determines what arguments for and against euthanasia they contain. Methods: We did an electronic search of seven Dutch national newspapers between January 2009 and May 2010 and conducted a content analysis. Results: Of the 284 articles containing the term ‘euthanasia’, 24% referred to practices outside the scope of the law, mostly relating to the forgoing of life-prolonging treatments and assistance in suicide by others than physicians. Of the articles with euthanasia as the main topic, 36% described euthanasia in the context of a terminally ill patient, 24% for older persons, 16% for persons with dementia, and 9% for persons with a psychiatric disorder. The most frequent arguments for euthanasia included the importance of self-determination and the fact that euthanasia contributes to a good death. The most frequent arguments opposing euthanasia were that suffering should instead be alleviated by better care, that providing euthanasia can be disturbing, and that society should protect the vulnerable. Conclusions: Of the newspaper articles, 24% uses the term ‘euthanasia’ for practices that are outside the scope of the euthanasia law. Typically, the more unusual cases are discussed. This might lead to misunderstandings between citizens and physicians. Despite the Dutch legalisation of euthanasia, the debate about its acceptability and boundaries is ongoing and both sides of the debate are clearly represented