Dilemmas in the (un)veiling of the diagnosis of Alzheimer's disease: Walking an ethical and professional tight rope

Karnieli‐Miller, Orit; Werner, Perla; Aharon‐Peretz, Judith; Eidelman, Shmuel

doi:10.1016/j.pec.2007.03.014

Cited by 52 publications

(85 citation statements)

References 39 publications

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“…Breaking bad news emerged in the ethics literature as a requirement of professionalism and justice only recently [135]. It has been found that physician attitudes and communication styles can result in behaviors designed to dull the full impact of the news and avoid full statements of a diagnosis [136–137]. Although physicians continue to find it stressful to give a bad diagnosis, it has been reported that patients typically can address the news without increased anxiety and that avoidance of diagnosis can have adverse outcomes [138].…”

Section: When Does Hd Begin?mentioning

confidence: 99%

Early detection of Huntington‘s disease

Paulsen

2009

Future Neurol.

111

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SUMMARY Huntington disease (HD) is a devastating illness, although its autosomal dominant genetic transmission allows a unique opportunity to study apparently healthy individuals before manifest disease. Attempts to study early disease are not unique in neurology (e.g., Mild Cognitive Impairment, Vascular Cognitive Impairment), but studying otherwise-healthy appearing individuals who will go on with nearly 99% certainty to manifest the symptoms of brain disease does provide distinct but valuable information about the true natural history of the disease. The field has witnessed an explosion of research examining possible early indicators of HD during what is now referred to as the “prodrome” of HD. A NIH study in its ninth year (PREDICT-HD) has offered a glimpse into the transition from an apparently healthy state to an obviously diseased state, and can serve as a model for many other genetic diseases, both neurological and non-neurological.

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Section: When Does Hd Begin?mentioning

confidence: 99%

Early detection of Huntington‘s disease

Paulsen

2009

Future Neurol.

111

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“…General practitioners find communicating the diagnosis of dementia difficult (Phillips et al, 2012, Karnieli-Miller et al, 2007b, Moore and Cahill, 2013 and that managing dementia is more frustrating than rewarding Montgomery, 2015b, Liu et al, 2013). There is variability in how the diagnosis is communicated terms of who gives the diagnosis, who is told, and what terms are used (Kissel andCarpenter, 2007, Moore andCahill, 2013).…”

mentioning

confidence: 99%

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners

Low¹,

McGrath

Swaffer

et al. 2018

Dementia

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The aim of this study is to systematically review practitioners' practices and attitudes in regards to communicating a diagnosis of dementia. A systematic search was conducted of Scopus, Web of Science and PubMed for English language original empirical papers. A sequential explanatory mixed studies analysis approach was used. Twenty-five quantitative descriptive, two intervention, six mixed methods descriptive and 21 qualitative studies were included. Pooled analysis showed that 34% of GPs and 48% of specialists usually/ routinely tell the person with dementia their diagnosis, and 89% of GPs and 97% specialists usually/routinely tell the family the diagnosis. Euphemistic terms such as 'memory problems' are more often used to describe dementia than medical terms. Practitioners' decision to diagnose and communicate the diagnosis of dementia are influenced by (a) their own beliefs regarding dementia and treatment efficacy and their confidence in diagnosis and communication; (b) patient circumstances including level of awareness, level of severity and family support; (c) the health and social care system including access to specialist and diagnostic services, reimbursement for diagnosis/management and availability of services and (d) cultural norms in relation to dementia including stigma, labels, and common clinical practice. The diagnosis and communication of diagnosis of dementia are intertwined processes and should be concurrently addressed in interventions. Multicomponent approaches to address these practices could include guideline development, practitioner education, anti-stigma public health campaigns, offering post-diagnosis treatments and support and sufficient reimbursement for practitioners for time spent managing dementia.

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“…On the other hand, a correct early diagnosis may be clarifying and appreciated by patients even without disease-modifying treatment, and a diagnosis could be valuable since it allows informed planning for the future [11] as we discuss further below. In practice, the attitudes of clinicians vary widely, and some may find it very difficult to “break the bad news” [12, 13]. …”

Section: The Ethics Of Uncertaintymentioning

confidence: 99%

To Know or Not to Know: Ethical Issues Related to Early Diagnosis of Alzheimer's Disease

Mattsson

Brax

Zetterberg

2010

International Journal of Alzheimer's Disease

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In Alzheimer's disease (AD), pathological processes start in the brain long before clinical dementia. Biomarkers reflecting brain alterations may therefore indicate disease at an early stage, enabling early diagnosis. This raises several ethical questions and the potential benefits of early diagnosis must be weighted against possible disadvantages. Currently, there are few strong arguments favouring early diagnosis, due to the lack of disease modifying therapy. Also, available diagnostic methods risk erroneous classifications, with potentially grave consequences. However, a possible benefit of early diagnosis even without disease modifying therapy is that it may enable early decision making when patients still have full decision competence, avoiding problems of hypothetical consents. It may also help identifying patients with cognitive dysfunction secondary to other diseases that may be responsive to treatment already today.

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Dilemmas in the (un)veiling of the diagnosis of Alzheimer's disease: Walking an ethical and professional tight rope

Cited by 52 publications

References 39 publications

Early detection of Huntington‘s disease

Early detection of Huntington‘s disease

Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners

To Know or Not to Know: Ethical Issues Related to Early Diagnosis of Alzheimer's Disease

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