Background: 'The Clinical Ethics Advisory Group' (CEAG) is the clinical ethics support body for Newcastle upon Tyne Hospitals National Health Service Foundation Trust. A significant change in CEAG's way of working occurred over the past 5 years as a result of Court decisions, increasing public expectations and an increase in CEAG's paediatric case flow.
Purpose: Review historical data: (a) as a useful benchmark to look for the early impact of significant service changes and (b) to seek possible reference ('sentinel') cases for use with a posited practical (casuistic) case-based reasoning model.
Methods: Audit of the minutes of the first 22 years' meetings was undertaken by the two chairs of CEAG over that period of time.
Results: 223 matters discussed: 86 Trust policy issues; 117 clinical cases (84 adult (32 urgent), 33 child (8 urgent)); 12 CEAG procedural issues and 8 UK Clinical Ethics Network 'round robin' cases. The range of topic areas was wide. A broad range of ethical structures were deployed, principlism predominated. Quality was subjectively assessed by each reviewer, but different methods were used. This proved highly concordant between the two reviewers. 47% (105/223) of discussions were 'excellent' (*A4C4-A4C4) and 70% (156.5/223) 'good' or better (*A4C4-A3C3). By meeting the criteria of 'excellent' and 'prospective', 92/223 (41%) of matters were deemed potentially suitable as sentinel cases.
Conclusions: The audit provides a rich vein of information. There is demand for CEAG's services, workload is becoming more complex. Formal funding for such services seems justified.
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http://dx.doi.org/10.1136/jme-2024-110250 | DOI Listing |
Background: Availability of amyloid modifying therapies will dramatically increase the need for disclosure of Alzheimer's disease (AD) related genetic and/or biomarker test results. The 21st Century Cares Act requires the immediate return of most medical test results, including AD biomarkers. A shortage of genetic counselors and dementia specialists already exists, thus driving the need for scalable methods to responsibly communicate test results.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Department of Psychiatry and Psychotherapy, Medical Faculty, University of Cologne, Cologne, Germany.
Background: Due to further development of diagnostic methods of early-stage diagnosis of Alzheimer's disease (AD) and new disease-modifying treatment options that require early diagnosis, a new focus on predictive and preventive medicine arises. With progress in AD dementia risk estimation, guidelines for counseling, considering individual aspects of those affected, are becoming more important. As part of the trinational project PreTAD (The Predictive Turn in Alzheimer's Disease: Ethical, Clinical, Linguistic and Legal Aspects) anticipated effects of AD dementia risk estimation for first-degree relatives of people with AD dementia are evaluated.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Center for Life Ethics, University of Bonn, Bonn, Germany.
Background: Driven by (bio-)medical and technical developments, advanced non-invasive methods for estimating the risk of Alzheimer's dementia (ADD) are increasingly emerging. In the future, such methods could eventually become available for individuals in asymptomatic and preclinical stages of Alzheimer's disease (e.g.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Research Program on Cognition and Neuromodulation-Based Interventions, University of Michigan, Ann Arbor, MI, USA.
Alzheimer's disease and related dementias (ADRD) and its associated care pose unique challenges, particularly within minority groups such as Muslim women. This population may face higher rates of ADRD alongside barriers to accessing culturally sensitive care. This abstract emphasizes the crucial role of understanding and integrating Islamic cultural and religious practices into ADRD care.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Older Adult's Psychiatry and Psychology Extension Program Federal University of Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
Background: Dementia syndromes are chronic health conditions that lead to significant cognitive decline and functional impairment, including acts of civil life. Concerning the latter, a guardianship petition maybe needed when patients or family are at risk.
Methods: Retrospective cross-sectional study of documentary research on 72 electronical guardianship proceedings involving adults with dementia.
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