scholarly journals Real-world ethics in palliative care: A systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice

2020 ◽  
pp. 026921632097427
Author(s):  
Guy Schofield ◽  
Mariana Dittborn ◽  
Richard Huxtable ◽  
Emer Brangan ◽  
Lucy Ellen Selman
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Clinical Practice ◽  
Ethical Issues ◽  
Clinical Care ◽  
Ethical Principles ◽  
Original Research ◽  
Specialist Palliative Care ◽  
Ethical Challenges ◽  
Ethical Practice

Background: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. Aim: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice. Design: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative. Data sources: Seven databases (MEDLINE, Philosopher’s Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges. Results: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy). Conclusion: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing.

scholarly journals Real-world ethics in palliative care: protocol for a systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e028480 ◽  
Author(s):  
Guy Schofield ◽  
Emer Brangan ◽  
Mariana Dittborn ◽  
Richard Huxtable ◽  
Lucy Selman
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Clinical Practice ◽  
Real World ◽  
Ethical Issues ◽  
Published Data ◽  
Narrative Synthesis ◽  
Specialist Palliative Care ◽  
Ethical Challenges ◽  
Care Protocol

IntroductionEthical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners (SPCPs) about real-world ethical challenges has not previously been synthesised. This evidence is crucial to inform education and training and adequately support staff. The aim of this systematic review is to synthesise the evidence regarding the ethical challenges which SPCPs encounter during clinical practice.Methods and analysisWe will conduct a systematic review with narrative synthesis of empirical studies that use inductive methods to describe the ethical challenges reported by SPCPs. We will search multiple databases (MEDLINE, Philosopher’s Index, EMBASE, PsycINFO, LILACS, WHOLIS, Web of Science and CINAHL) without time, language or geographical restrictions. Keywords will be developed from scoping searches, consultation with information specialists and reference to key systematic reviews in palliative care and bioethics. Reference lists of included studies will be hand-searched. 10% of retrieved titles and abstracts will be independently dual screened, as will all full text papers. Quality will be dual assessed using the Mixed-Methods Appraisal Tool (2018). Narrative synthesis following Popayet al(2006) will be used to synthesise findings. The strength of resulting recommendations will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach for qualitative evidence (GRADE-CERQual).Ethics and disseminationAs this review will include only published data, no specific ethical approval is required. We anticipate that the systematic review will be of interest to palliative care practitioners of all backgrounds and educators in palliative care and medical ethics. Findings will be presented at conferences and published open access in a peer-reviewed journal.Trial registration numberCRD42018105365.

Test genetici e consenso informato

2012 ◽  
pp. 68-95
Author(s):  
Marco Seri ◽  
Claudio Graziano ◽  
Daniela Turchetti ◽  
Juri Monducci
Keyword(s):  
Dna Sequencing ◽  
Human Genetics ◽  
Ethical Issues ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Genome Project ◽  
Ethical Challenges ◽  
Sequencing Technologies ◽  
The Human Genome Project

The pace of discovery in the field of human genetics has increased exponentially in the last 30 years. We have witnessed the completion of the Human Genome Project, the identification of hundreds of disease-causing genes, and the dawn of genomic medicine (clinical care based on genomic information). Reduction of DNA sequencing costs, thanks to the so-called "next generation sequencing" technologies, is driving a shift towards the era of "personal genomes", but scientific as well as ethical challenges ahead are countless. We provide an overview on the classification of genetic tests, on informed consent procedures in the context of genetic counseling, and on specific ethical issues raised by the implementation of new DNA sequencing technologies.

The Ethics of Testing

1995 ◽  
Vol 4 (3) ◽  
pp. 5-8 ◽  
Author(s):  
Alison Garton
Keyword(s):  
Professional Practice ◽  
Final Section ◽  
Career Guidance ◽  
Ethical Issues ◽  
Ethical Principles ◽  
Test Administration ◽  
Test Interpretation ◽  
Ethical Practice ◽  
Test Use ◽  
Test Usage

This paper is concerned with ethical issues in the practice and administration of tests. Some broad principles related to the knowledge required for test usage are described, together with the skills necessary for competent test use. Ethical practice in relation to test users, training in testing, test administration, test interpretation and test instruments is also examined. The focus then changes to a consideration of the more general ethical principles that apply to professional practice and are equally applicable to testing. A final section examines the relevance of these issues for career guidance practitioners and also some recent professional developments that will encourage ethical practice in testing.

Identifying stakeholder opinion regarding access to “high-cost medicines”: A systematic review of the literature

Open Medicine ◽  
2014 ◽  
Vol 9 (3) ◽  
pp. 513-527 ◽  
Author(s):  
Philip Wahlster ◽  
Shane Scahill ◽  
Sanjay Garg ◽  
Zaheer-Ud-Din Babar
Keyword(s):  
Systematic Review ◽  
Ethical Issues ◽  
Treatment Options ◽  
System Level ◽  
Research Articles ◽  
Original Research ◽  
Review Of The Literature ◽  
Moral Issues ◽  
The Public ◽  
Patient Groups

AbstractObjective: To identify the viewpoints and perceptions of different stakeholders regarding high cost medicines (HCMs). Methods: A systematic review of the literature was performed to identify original research articles. Using predefined categories, data related to the viewpoints of different stakeholders was systematically extracted and analyzed. Results: Thirty seven original research articles matched the criteria. The main stakeholders identified include physicians, patients, public and health funding authorities. The influence of media and other economic and ethical issues were also identified in the literature. A large number of stakeholders were concerned about lack of access to HCMs. Physicians have difficulty balancing the the rational use of expensive drugs while at the same time acting as “patients’ advocate”. Patients would like to know about all treatment options, even if they may not be able to afford them. The process and criteria for reimbursement should be transparent and access has to be equitable across patient groups. Conclusion: Access to HCMs could be improved through transparency and involvement of all stakeholders, especially patients and the public. Moral issues and the “rule of rescue” could influence decision-making process significantly. At system level, objectivity is important to ensure that the system is equitable and transparent.

scholarly journals Specialist palliative care services for older people in primary care: A systematic review using narrative synthesis

2019 ◽  
Vol 34 (1) ◽  
pp. 32-48 ◽  
Author(s):  
Kim de Nooijer ◽  
Yolanda WH Penders ◽  
Lara Pivodic ◽  
Nele J Van Den Noortgate ◽  
Peter Pype ◽  
...  
Keyword(s):  
Systematic Review ◽  
Primary Care ◽  
Palliative Care ◽  
Older People ◽  
Narrative Synthesis ◽  
Specialist Palliative Care ◽  
Family Carers ◽  
Care Services ◽  
Specialist Services ◽  
Palliative Care Services

Background: There is recognition that older people with incurable conditions should have access to specialist palliative care services. However, it remains unclear which activities and outcomes these services entail for older people in primary care and to which patients they are provided. Aim: The aim of this review was to identify the criteria for referral to specialist services; who provides specialist palliative care; through which activities and with which frequency; which outcomes are reported; and which suggestions are made to improve services. Design: Systematic review of the literature and narrative synthesis. Quality appraisal and selection of studies were performed independently by two researchers. Participant characteristics, intervention features, outcome data and suggestions for improvement were retrieved. Data sources: Embase, Medline, Web of Science, Cochrane, Google Scholar, PsycINFO and CINAHL EBSCO databases (until June 2019). Results: Ten eligible articles, three qualitative, three quantitative, three mixed-method and one narrative review, were identified. Referral criteria were mainly based on patient characteristics such as diagnosis. The specialist services involved a variety of activities and outcomes and descriptions were often lacking. Services could be improved regarding the information flow between healthcare professionals, greater in-depth palliative care knowledge for case managers and social workers, identification of a key worker and support for family carers. Conclusion: The limited evidence available shows areas for improvement of the quality of and access to specialist services for older people, such as support for family carers. In addition, this review underscores the need for comprehensive reporting of interventions and the use of consensus-based outcome measures.

Ethical Challenges of Early Identification of Advanced Chronic Patients in Need of Palliative Care

2018 ◽  
Vol 33 (4) ◽  
pp. 247-251 ◽  
Author(s):  
Xavier Gómez-Batiste ◽  
Carles Blay ◽  
Marc Antoni Broggi ◽  
Cristina Lasmarias ◽  
Laura Vila ◽  
...  
Keyword(s):  
Palliative Care ◽  
Social Services ◽  
Early Identification ◽  
Ethical Issues ◽  
Life Quality ◽  
Family Care ◽  
Ethics Committees ◽  
Care Process ◽  
Ethical Challenges ◽  
Chronic Patients

Palliative care must be early applied to all types of advanced chronic and life limited prognosis patients, present in all health and social services. Patients' early identification and registry allows introducing palliative care gradually concomitant with other measures. Patients undergo a systematic and integrated care process, meant to improve their life quality, which includes multidimensional assessment of their needs, recognition of their values and preferences for advance care planning purposes, treatments review, family care, and case management. Leaded by the National Department of Health, a program for the early identification of these patients has been implemented in Catalonia (Spain). Although the overall benefits expected, the program has raised some ethical issues. In order to address these challenges, diverse institutions, including bioethics and ethics committees, have elaborated a proposal for the program's advantages. This paper describes the process of evaluation, elaboration of recommendations, and actions done in Catalonia.

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