Abstract:
BACKGROUND:In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of 'good death' to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we conducted a scoping review and thematic synthesis. METHODS:To capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature. RESULTS:Initial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as 'natural' and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making (in all its forms), its influence on policy and decision-making, and some caveats that arise from the studies. CONCLUSIONS:Together these three themes indicate a number of directions for future research, which are likely to be applicable to other conditions that result in reduced agency. Above all, this review emphasises the need for new concepts and fresh approaches to end of life decision-making that address the needs of the growing population of frail older people, people with dementia and those with severe traumatic brain injury.
journal_name
BMC Med Ethicsjournal_title
BMC medical ethicsauthors
Birchley G,Jones K,Huxtable R,Dixon J,Kitzinger J,Clare Ldoi
10.1186/s12910-016-0129-xsubject
Has Abstractpub_date
2016-07-27 00:00:00pages
46issue
1issn
1472-6939pii
10.1186/s12910-016-0129-xjournal_volume
17pub_type
杂志文章,评审abstract:BACKGROUND:Family members do not have an official position in the practice of euthanasia and physician assisted suicide (EAS) in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and eth...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0361-2
更新日期:2019-04-05 00:00:00
abstract:BACKGROUND:In most socialised health systems there are formal processes that manage resource scarcity and determine the allocation of funds to health services in accordance with their priority. In this analysis, part of a larger qualitative study examining the ethical issues entailed in doctors' participation as techni...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0314-1
更新日期:2018-07-24 00:00:00
abstract:BACKGROUND:The work of Research Ethics Boards (REBs), especially when involving genetics research and biobanks, has become more challenging with the growth of biotechnology and biomedical research. Some REBs have even rejected research projects where the use of a biobank with coded samples was an integral part of the s...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-7-4
更新日期:2006-04-06 00:00:00
abstract:BACKGROUND:Social media and Internet technologies present several emerging and ill-explored issues for a modern healthcare workforce. One issue is patient-targeted Googling (PTG), which involves a healthcare professional using a social networking site (SNS) or publicly available search engine to find patient informatio...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0230-9
更新日期:2017-12-04 00:00:00
abstract:BACKGROUND:The individual informed consent model remains critical to the ethical conduct and regulation of research involving human beings. Parental informed consent process in a rural setting of northern Ghana was studied to describe comprehension and retention among parents as part of the evaluation of the existing i...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-9-12
更新日期:2008-06-19 00:00:00
abstract:BACKGROUND:Financial relationships between physicians and industry are extensive and public reporting of industry payments to physicians is now occurring. Our objectives were to describe physician recipients of large total payments from these seven companies, and to examine discrepancies between these payments and conf...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-13-24
更新日期:2012-09-26 00:00:00
abstract:BACKGROUND:The use of empirical research methods in bioethics has been increasing in the last decades. It has resulted in discussions about the 'empirical turn of bioethics' and raised questions related to the value of empirical work for this field, methodological questions about its quality and rigor, and how this int...
journal_title:BMC medical ethics
pub_type: 杂志文章,多中心研究
doi:10.1186/s12910-017-0239-0
更新日期:2017-12-22 00:00:00
abstract:BACKGROUND:Community engagement (CE) models have provided much needed guidance for researchers to conceptualise and design engagement strategies for research projects. Most of the published strategies, however, still show very limited contribution of the community to the engagement process. One way of achieving this is...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0236-3
更新日期:2017-12-13 00:00:00
abstract:BACKGROUND:Despite the growing recognition for the need to improve the health of prisoners in Canada and the need for health research, there has been little discussion of the ethical issues with regards to health research with prisoners in Canada. The purpose of this paper is to encourage a national conversation about ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0189-6
更新日期:2017-04-27 00:00:00
abstract:BACKGROUND:Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare professionals whether the decision to resuscitate at the limit of viability (intensive care versus comfort ...
journal_title:BMC medical ethics
pub_type: 杂志文章,随机对照试验
doi:10.1186/s12910-019-0413-7
更新日期:2019-10-22 00:00:00
abstract:BACKGROUND:There is continued need for enhanced medical ethics education across the United States. In an effort to guide medical ethics education reform, we report the first interprofessional survey of a cohort of graduate medical, nursing and allied health professional students that examined perceived student need for...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00468-4
更新日期:2020-04-08 00:00:00
abstract:BACKGROUND:Cancer patients are at risk of developing blood clots in their veins - venous thromboembolism (VTE) - which often takes the form of a pulmonary embolism or deep vein thrombosis. The risk increases with advanced disease. Evidence based treatment is low molecular weight heparin (LMWH) by daily subcutaneous inj...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-13-22
更新日期:2012-09-04 00:00:00
abstract:BACKGROUND:This debate article explores how smart technologies may create a double-edged sword for patient safety and effective therapeutic relationships. Increasing utilization of health monitoring devices by patients will likely become an important aspect of self-care and preventive medicine. It may also help to enha...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0255-8
更新日期:2018-03-06 00:00:00
abstract:BACKGROUND:Institutional review boards (IRBs) distinguish health care quality improvement (QI) and health care quality improvement research (QIR) based primarily on the rigor of the methods used and the purported generalizability of the knowledge gained. Neither of these criteria holds up upon scrutiny. Rather, this ap...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-015-0056-2
更新日期:2015-09-17 00:00:00
abstract:BACKGROUND:A child is a developing person with evolving capacities that include autonomy, mental (decisional) capacity and capacity to assume responsibility. Hence, children are entitled to participatory (autonomy) rights in South Africa as observed in the Children's Act 38 of 2005. According to section 129 of the Act ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-016-0150-0
更新日期:2016-11-02 00:00:00
abstract:BACKGROUND:In todays' super-diverse societies, communication and interaction in clinical encounters are increasingly shaped by linguistic, cultural, social and ethnic complexities. It is crucial to better understand the difficulties patients with migration background and healthcare professionals experience in their sha...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0311-4
更新日期:2018-07-04 00:00:00
abstract:BACKGROUND:Public satisfaction with policy process influences the legitimacy and acceptance of policies, and conditions the future political process, especially when contending ethical value judgments are involved. On the other hand, public involvement is required if effective policy is to be developed and accepted. M...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-6-1
更新日期:2005-01-20 00:00:00
abstract:BACKGROUND:France has long been a country of immigration and in some respects may be seen to have a generous policy with respect to asylum seekers and access to health care for migrants. The French state notably provides healthcare access for undocumented migrants, through state medical aid and since 1998 has had a hum...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-00500-7
更新日期:2020-07-13 00:00:00
abstract:BACKGROUND:Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and fur...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-015-0053-5
更新日期:2015-09-09 00:00:00
abstract:BACKGROUND:Efforts to improve patients' understanding of their own medical treatments or research in which they are involved are progressing, especially with regard to informed consent procedures. We aimed to design a multisource informed consent procedure that is easily adaptable to both clinical and research applicat...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-14-30
更新日期:2013-07-30 00:00:00
abstract:BACKGROUND:Ethics committees typically apply the common principles of autonomy, nonmaleficence, beneficence and justice to research proposals but with variable weighting and interpretation. This paper reports a comparison of ethical requirements in an international cross-cultural study and discusses their implications....
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-3-2
更新日期:2002-04-19 00:00:00
abstract:BACKGROUND:Making particular use of Shale's analysis, this paper discusses the notion of leadership in the context of palliative medicine. Whilst offering a critical perspective, I build on the philosophy of palliative care offered by Randall and Downie and suggest that the normative structure of this medical specialit...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-018-0296-z
更新日期:2018-06-05 00:00:00
abstract:BACKGROUND:Mobile applications and socio-sexual networking websites are used by outreach workers to respond synchronously to questions and provide information, resources, and referrals on sexual health and STI/HIV prevention, testing, and care to gay, bisexual and other men who have sex with men (GB2M). This explorator...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0216-7
更新日期:2017-11-03 00:00:00
abstract:BACKGROUND:Various forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics support. In the Netherlands, a CES quality assessment project based on a responsive evaluation design...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0418-2
更新日期:2019-11-01 00:00:00
abstract:BACKGROUND:Implementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-015-0072-2
更新日期:2015-11-16 00:00:00
abstract:BACKGROUND:Professional guidelines have addressed ethical dilemmas posed by a few types of nontraditional procreative arrangements (e.g., gamete donations between family members), but many questions arise regarding how providers view and make decisions about these and other such arrangements. METHODS:Thirty-seven ART ...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-017-0177-x
更新日期:2017-02-28 00:00:00
abstract:BACKGROUND:A requisite for ethical human subjects research is that participation should be informed and voluntary. Participation during the informed consent process by way of asking questions is an indicator of the extent to which consent is informed. AIMS:The aims of this study were to assess the extent to which pare...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/1472-6939-12-3
更新日期:2011-02-15 00:00:00
abstract:BACKGROUND:Precision medicine (PM) is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning hea...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-020-0457-8
更新日期:2020-02-19 00:00:00
abstract:BACKGROUND:Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international h...
journal_title:BMC medical ethics
pub_type: 杂志文章
doi:10.1186/s12910-019-0359-9
更新日期:2019-03-28 00:00:00
abstract:BACKGROUND:When conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations. METHODS:A systematic literature search was cond...
journal_title:BMC medical ethics
pub_type: 杂志文章,评审
doi:10.1186/s12910-016-0139-8
更新日期:2016-10-22 00:00:00