Hypertrophic cardiomyopathy—genetic causes and ethical challenges for clinical care

2014 ◽  
Vol 9 (9) ◽  
pp. 436-441
Author(s):  
Timothy Dent ◽  
Heather Skirton
Keyword(s):  
Hypertrophic Cardiomyopathy ◽  
Clinical Care ◽  
Ethical Challenges ◽  
Genetic Causes

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.

Hypertrophic cardiomyopathy: prevention of sudden cardiac death

2018 ◽  
Author(s):  
Constantinos O’Mahony
Keyword(s):  
Hypertrophic Cardiomyopathy ◽  
Sudden Cardiac Death ◽  
Risk Stratification ◽  
Cardiac Death ◽  
Clinical Care ◽  
Psychological Impact ◽  
Ventricular Outflow Tract ◽  
Left Ventricular ◽  
Icd Implantation ◽  
European Society Of Cardiology

Sudden cardiac death (SCD) secondary to ventricular arrhythmias is the most common mode of death in hypertrophic cardiomyopathy (HCM) and can be effectively prevented with an implantable cardioverter defibrillator (ICD). The risk of SCD in HCM relates to the severity of the phenotype and regular risk stratification is an integral part of routine clinical care. For the primary prevention of SCD, risk stratification involves the assessment of seven readily available clinical parameters (age, maximal left ventricular wall thickness, left atrial diameter, left ventricular outflow tract gradient, non-sustained ventricular tachycardia, unexplained syncope, and family history of SCD) which are used to estimate the risk of SCD within 5 years of clinical evaluation using a statistical risk prediction model (HCM Risk-SCD). The 2014 European Society of Cardiology Guidelines provide a framework to aid clinical decisions and consider patients with a 5-year risk of SCD of less than 4% as low risk and recommend regular assessment while those with a risk of 6% or higher should be considered for an ICD. In patients with an intermediate risk (4% to <6%) ICD implantation may also be considered after taking into account age, co-morbid conditions, socioeconomic factors, and the psychological impact of therapy. Survivors of ventricular fibrillation arrest should receive an ICD for secondary prevention unless their life expectancy is less than 1 year. Following device implantation, patients should be followed up for device- and disease-related complications, particularly heart failure and cerebrovascular disease.

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 How to do (or not to do) … using the standardized patient method to measure clinical quality of care in LMIC health facilities

2019 ◽  
Vol 34 (8) ◽  
pp. 625-634 ◽  
Author(s):  
Jessica J C King ◽  
Jishnu Das ◽  
Ada Kwan ◽  
Benjamin Daniels ◽  
Timothy Powell-Jackson ◽  
...  
Keyword(s):  
Clinical Care ◽  
Healthcare Providers ◽  
Sampling Strategy ◽  
Ethical Challenges ◽  
Middle Income ◽  
Healthcare Facilities ◽  
Rich Data ◽  
Mystery Shoppers ◽  
Key Steps

Abstract Standardized patients (SPs), i.e. mystery shoppers for healthcare providers, are increasingly used as a tool to measure quality of clinical care, particularly in low- and middle-income countries where medical record abstraction is unlikely to be feasible. The SP method allows care to be observed without the provider’s knowledge, removing concerns about the Hawthorne effect, and means that providers can be directly compared against each other. However, their undercover nature means that there are methodological and ethical challenges beyond those found in normal fieldwork. We draw on a systematic review and our own experience of implementing such studies to discuss six key steps in designing and executing SP studies in healthcare facilities, which are more complex than those in retail settings. Researchers must carefully choose the symptoms or conditions the SPs will present in order to minimize potential harm to fieldworkers, reduce the risk of detection and ensure that there is a meaningful measure of clinical care. They must carefully define the types of outcomes to be documented, develop the study scripts and questionnaires, and adopt an appropriate sampling strategy. Particular attention is required to ethical considerations and to assessing detection by providers. Such studies require thorough planning, piloting and training, and a dedicated and engaged field team. With sufficient effort, SP studies can provide uniquely rich data, giving insights into how care is provided which is of great value to both researchers and policymakers.

scholarly journals From Creation to Evaluation: A Comprehensive Global Health Scholars Program for Graduate Medical Education Trainees

2020 ◽  
Vol 7 ◽  
pp. 238212052095182
Author(s):  
Jennifer Morgan ◽  
Shannon Galvin ◽  
Joshua Goldstein ◽  
Colleen Fant ◽  
Robert Murphy ◽  
...  
Keyword(s):  
Medical Education ◽  
Global Health ◽  
Graduate Medical Education ◽  
Underserved Populations ◽  
Journal Club ◽  
Clinical Care ◽  
Ethical Challenges ◽  
Graduate Medical ◽  
Global Health Education ◽  
The Many

Introduction: Recently, participation in clinical global health rotations has significantly increased among graduate medical education (GME) trainees. Despite the many benefits these experiences provide, many ethical challenges exist. Well-intentioned partnerships and participants often encounter personal and professional dilemmas related to safety, social responsibility, and accountability. We designed a curriculum to provide trainees of all specialties with a comprehensive educational program aimed at delivering culturally mindful and ethically responsible clinical care in resource-constrained settings. Methods: The McGaw Global Health Clinical Scholars Program (GHCS) at Northwestern University offers a 2-year curriculum for selected GME trainees across specialties interested in global health. Each trainee must complete the following components: core lectures, peer journal club, specialty-specific lectures, a mentorship agreement, ethics and skill-based simulations, a global health field experience, a poster presentation, and a mentored scholarly project. Results: Since 2014, 84 trainees from 13 specialties have participated in the program with 50 current trainees and 39 graduates. Twenty-five trainees completed exit surveys, of which 95% would recommend this program to other trainees and 84% felt more prepared to deliver global health care. In addition, 78% reported career plans that included global health and/or work with underserved populations. Trainees described “acceptance of differences and respect for those differences” and “understanding sustainability” as learning points from the program. Discussion: Providing a comprehensive global health education program across specialties can be feasible and effective. GME trainees who participated in this program report feeling both more prepared for clinical experiences and more likely to serve the underserved anywhere.

scholarly journals Ethical Challenges in Health Care Policy during COVID-19 Pandemic in Italy

Medicina ◽  
2020 ◽  
Vol 56 (12) ◽  
pp. 691
Author(s):  
Davide Ferorelli ◽  
Gabriele Mandarelli ◽  
Biagio Solarino
Keyword(s):  
Health Care ◽  
Health Workers ◽  
Clinical Care ◽  
Decision Makers ◽  
Public Health Care ◽  
Community Safety ◽  
Ethical Challenges ◽  
Malpractice Claims ◽  
The Government ◽  
The Impact

Since the outbreak of the coronavirus disease 2019 (COVID-19) pandemic, Italy has proven to be one of the countries with the highest coronavirus-linked death rate. To reduce the impact of SARS-CoV-2 coronavirus, the Italian Government decision-makers issued a series of law decrees that imposed measures limiting social contacts, stopped non-essential production activities, and restructured public health care in order to privilege assistance to patients infected with SARS-CoV-2. Health care services were substantially limited including planned hospitalization and elective surgeries. These substantial measures were criticized due to their impact on individual rights including freedom and autonomy, but were justified by the awareness that hospitals would have been unable to cope with the surge of infected people who needed treatment for COVID-19. The imbalance between the need to guarantee ordinary care and to deal with the pandemic, in a context of limited health resources, raises ethical concerns as well as clinical management issues. The emergency scenario caused by the COVID-19 pandemic, especially in the lockdown phase, led the Government and health care decision-makers to prioritize community safety above the individuals’ rights. This new community-centered approach to clinical care has created tension among the practitioners and exposed health workers to malpractice claims. Reducing the morbidity and mortality rates of the COVID-19 pandemic is the priority of every government, but the legitimate question remains whether the policy that supports this measure could be less harmful for the health care system.

Doing “Good” With Limited Resources: Is It Good Enough in the Provision of Quality Clinical Care?

2009 ◽  
Vol 2 (1) ◽  
pp. 5-7 ◽  
Author(s):  
Connie M. Ulrich ◽  
Christine Grady
Keyword(s):  
Clinical Judgment ◽  
Clinical Care ◽  
Control Measures ◽  
Limited Resources ◽  
Health Plans ◽  
Ethical Challenges ◽  
Care Policies ◽  
Health Care Policies ◽  
Nurses And Physicians ◽  
The Cost

The article discusses the ethical challenges advanced practitioners face in the provision of quality clinical care. According to the authors, nurses and physicians are trying to balance their clinical judgment of what patients need with the cost control measures of health plans. But even when the provider does the best he or she can, it may not feel good enough. To benefit patients and the profession, advanced practitioners need to be part of the conversations that reign in costs and shape sound health care policies.

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