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Diagnosis Disclosure of Prodromal Alzheimer Disease-Ethical Analysis of Two Cases

Published online by Cambridge University Press:  02 December 2014

Corinna Porteri ,
Samantha Galluzzi ,
Cristina Geroldi  and
Giovanni B. Frisoni
Corinna Porteri*
Affiliation:
Bioethics Unit, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
Samantha Galluzzi
Affiliation:
Lenitem Laboratory of Epidemiology, Neuroimaging & Telemedicine, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
Cristina Geroldi
Affiliation:
Psychogeriatrics Unit, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy Lenitem Laboratory of Epidemiology, Neuroimaging & Telemedicine, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
Giovanni B. Frisoni
Affiliation:
Lenitem Laboratory of Epidemiology, Neuroimaging & Telemedicine, IRCCS Centro San Giovanni di Dio Fatebenefratelli, Brescia, Italy
*
Bioethics Unit, Irccs Centro S. Giovanni Di Dio Fatebenefratelli, Via Pilastroni, 4; 25125 Brescia - Italia.
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Abstract

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Background:

According to a recent proposal for revised diagnostic criteria for Alzheimer disease, the diagnosis could be made even in the absence of impairment of social function or daily life activities, provided positivity of one or more abnormal biomarkers. The use of the new proposed diagnostic criteria raises ethical issues and needs to be carefully evaluated.

Method:

We describe two clinical cases of prodromal Alzheimer's disease and discuss the diagnosis disclosure, taking into consideration several issues: (i) the issue of the boundary between well founded research procedures and clinical practice, (ii) the issue of the fuzziness of the concepts of scientific evidence and scientific uncertainty, (iii) the issue of patient's autonomy and patient's best interest, and (iv) the issue of the patients' specific personal and social context.

Results:

The degree of informativeness of the proposed diagnostic criteria for the single patient is already such as to deserve high regard in making the diagnosis and in the diagnosis disclosure process. During the disclosure process, the physician needs to take into account both what is known and what it is not sufficiently known. The patient's personal and environmental conditions should drive the physician to partial or full diagnostic disclosure, or delay communication.

Conclusion:

We proposed two different diagnosis disclosure processes, on the basis of the common neurological features and of the different global clinical situations, socio-personal contexts and attitudes towards the communication of the diagnosis.

Contexte:

Selon une proposition récente concernant une révision des critères diagnostiques de la maladie d’Alzheimer (MA), le diagnostic pourrait être fait même en l’absence d’atteinte de la fonction sociale ou des activités de la vie quotidienne, en autant qu’un biomarqueur anormal ou plus soient positifs. L’utilisation des nouveaux critères à but diagnostique proposés soulève des questions éthiques et doit être évaluée avec soin.

Méthode:

Nous décrivons deux observations cliniques de patients en phase prodromale de la MA et nous discutons de la divulgation du diagnostic, en tenant compte de plusieurs aspects : 1) la limite entre des tests de recherche bien établis et la pratique clinique; 2) le flou des concepts de preuve scientifique et d’incertitude scientifique; 3) l’autonomie et le meilleur intérêt du patient; 4) le contexte personnel et social propre à chaque patient.

Résultats:

Le niveau informatif des critères diagnostiques proposés pour un patient donné est déjà tel qu’il mérite qu’on en tienne compte lorsqu’on pose le diagnostic et lors de sa divulgation. Pendant le processus de divulgation du diagnostic, le médecin doit tenir compte tant de ce qui est connu que de ce qui n’est pas très bien connu. Le médecin devrait aussi tenir compte de la situation personnelle et contextuelle du patient dans sa décision de procéder à une divulgation partielle ou entière du diagnostic ou d’en retarder la divulgation.

Conclusion:

Nous avons proposé deux processus différents de divulgation du diagnostic basés sur les manifestations neurologiques habituelles et sur des situations cliniques différentes, des contextes sociopersonnels différents et des attitudes différentes envers la divulgation du diagnostic.

Type
Research Article
Information
Canadian Journal of Neurological Sciences , Volume 37 , Issue 1 , January 2010 , pp. 67 - 75
Copyright
Copyright © The Canadian Journal of Neurological 2010

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